Life and Liberation

I missed Christmas

2011-12-25T19:35:00.000-08:00

I have felt pretty horrible the past few days. Mix that with a 7 year old that develops a stomach bug for two days .. and not making it to the bathroom in time, and you have lots of fun cleanup with a pounding head. I just can't seem to shake this tension headache, and it causes such pain in my neck/head and achiness and nausea, that my Christmas has pretty much been a write-off. All the traditions I normally did with my kids went out the window. How depressing.

I sent the fam to the Christmas family get together today on their own. It's been a quiet day, other than the ringing in my head. My first Christmas alone.

Hoping the rest of the holiday will improve and I will be able to enjoy some time with my family. I was hoping to at least get over to Starbucks for our Christmas morning coffee & hot chocolates, but didn't manage that either.

No Christmas Cookie Decorating

2011-12-21T11:10:00.000-08:00

A year hasn't gone by in the past 20 years when we have skipped making Christmas cookies together. Years ago, it was my mom making cookies with me and Jordan, then it was transferred to me, every December, baking and decorating cookies together. Always a huge mess, but a big memory. This year, I can't see how I can pull it off. I just don't have the energy. It's really sad, as I had so much time this December to get it done, but it seems my body just doesn't want to let me.

Perhaps it was just the tension and stress of having all the kids in casts or the hospital .. maybe this is finally my body saying "enough" and giving up.

It started on Sunday night, when I was just laying down on the couch watching a movie with Jordan, I felt my body start to drain. I went to bed early at 9:30pm, knowing I'd be in for a long night. I didn't sleep the entire night, my body feeling very foreign and much like my insides were a giant balloon being blown up so much that I was going to explode.

The next day, Saturday, was pretty much a write-off with huge pressure at the back of my head. I continued on as much as I could, but by Tuesday afternoon, it was so intense that I decided to go to a walk-in clinic. Unfortunately, the wait there was almost three hours long, so I decided to go to Emerg at 4pm. The wait there was fairly substantial as well, but by 6:30pm, I had seen the doc and he ordered a series of x-rays and a ct of my head to rule out anything sinister. Thankfully, they saw nothing on the scans, and he really didn't know what to suggest, other than perhaps a tension headache gone crazy. They gave me two T3s and 600 of Ibuprofen for the pain, which took it down about 50%. I finally got home just before 10pm and had a fairly decent sleep considering. I didn't take any more pain meds until 10:30am .. so I am hoping I didn't wait too long, as it's starting to feel a bit crazy again.

I'm sad that this Christmas seems to be a write-off for the things I wanted to do to create memories, but I guess I'll just have to resolve to make "New Years" cookies this year :)

Last Year's Gingerbread Man Decorating:

Slow Motion

2011-12-14T11:01:00.000-08:00

My body is definitely in a downward spiral. Yesterday I could feel myself sinking, and by evening, it was getting worse. I spent the night in a fitful sleep, feeling the pain within my body and it keeping me from getting into that deep sleep which is so essential. My left arm has been plagued for a month with intense nerve pain, like a sharp twinge up and down the skin that makes it feel itching from hell -- but no amount of scratching even touches it. I woke up realizing today would be another challenge to fulfill my daily tasks.

I'm in that spot of "do I cry .. or do I go into robot mode and just keep going?". All of this reminds me of when my mom would lay in bed for days. I would be so frustrated that she was not able to contribute to life.. frustrated that I had lost my mom to that unseen attacker that would keep her from me for days. And here I am -- repeating history for my children, only I'm doing it 20 years earlier than my mom was. I am angry, I am frustrated, I am so sad that I feel like I'm stuck in this prison. I so want to enjoy getting ready for Christmas. I want to bake cookies and bring them to my neighbors. Yet here I sit in my bed, unable to muster up enough energy and strength to even feed my kids breakfast (thank goodness for cereal on days like these).

I hear of stories of people with immense strength, courage to keep plugging forward and seem to rise to the occasion .. it makes me wonder if I've been given all this by mistake. I don't have what it takes to be strong amidst all of this. It's such a drain on my family.

I see my neurologist tomorrow to just give him an update on all that is happening with me. Pretty sure he can't do anything about it, but it's something to note in my chart.

End of School Term

2011-12-12T23:24:00.000-08:00

School reporting today which went well. I had some apologies for all the work we did NOT do because of me being in the hospital with Jordan for so many weeks.

I have a realllly itchy left arm.. driving me crazy. Feeling very very tired. I think I'm fighting a complete crash.. I don't know if I can keep it away....

UBC

2011-12-09T23:21:00.000-08:00

Drove in to UBC for dental appointments for the little kids. Julianna of course, freaked out and wouldn't let them actually check her, Ryan has more cavities and Daniel needs another crown.. oh joy.

Britannia Mines

2011-12-06T23:19:00.000-08:00

Jordan was stubborn enough to want to still go to our scheduled Britannia Mine excursion we had planned back in the summer.

He did remarkably well walking around the mine but tired out after about 2 hours. Not bad! Stayed in Squamish overnight at a hotel (Groupon purchase) and that was nice to relax after our long day of travel and walking. Made a nice steak dinner for the fam .. hoping to put some fat back on Jordan!! The little kids got to swim in the pool and Jordan spent more time in the room catching up on his studies.

Home - day 5

2011-12-04T23:17:00.000-08:00

Jordan is doing better as he has rested for a few days now. Seems to have “turned the corner” and dropped his low-grade fever and is on the mend. So happy about that! Still moving slowly and carefully. Great that he could have this weekend to just lay low and mend.

Jordan is having his job interview today and going to his last Stats class to help clear up some of the missing pieces from his time in the hospital. Finally got our Christmas cards and pix sent out in the mail today, even though they’ve been sitting around since mid-November. So much for being organized and prepared!

Went to the the city’s Christmas tree lighting celebration .. Jordan stayed home as there is no way he’d be able to walk around that much. It was fun for the kids!

Home - day 4

2011-12-02T23:16:00.000-08:00

We did a few comprises .. he postponed his job interview for Monday (the 9:30am meeting) and skipped the class in the middle, so he’s taking one class this morning, back home for a rest and then back for 2:30-4pm - much better! (yet he’s still fairly wiped).

Home - day 3

2011-12-01T23:15:00.000-08:00

Still has fever.. am keeping the house cool. Tells me he is going to go to attend his last day of classes tomorrow. He is NOT well enough to do that .. (9:30am until 4pm) with no break between the classes. Not a smart move as he is still fairly weak.

Home - day 2

2011-11-30T23:14:00.000-08:00

Still continues to have a fever (under 38). I have been setting my alarm clock to get up at 2am to give him Tylenol to keep it down.

He went to his Calculus class today as it was a review for the final exam. He looks like an 80 year old walking skeleton shuffling into the school (he’s lost a lot of weight). Really pushing himself as he does best...

He's home!

2011-11-29T23:11:00.000-08:00

Dr. Bond doesn’t think he needs another x-ray, so discharged Jordan early in the morning. I wasn't able to get in that quickly so he just watched some movies until I could get in with the kids.

12:30pm .. Jordan is now home and is really weak and in pain.

9:53pm .. noticed that Jordan has developed a fever (38.8)

Dr. Bond has him on a 21 day course of antibiotics.

Home?

2011-11-28T23:10:00.000-08:00

1:29pm Jordan is still in substantial pain, most likely due to the chest tube. The doc wants to do an x-ray today, another x-ray in the morning and if things look good, take the chest tube out tomorrow and then maybe home tomorrow afternoon (Tuesday). I am home with the kids today as Kirk needs to be at work.

6:14pm So Dr. Bond wants to take Jordan’s chest tube out now to see how he would go without it. More x-rays tonight at 9pm and again tomorrow morning. If all goes well he will go home tomorrow morning. (I recall saying that before …)

Not a good day.

2011-11-27T23:08:00.000-08:00

Didn’t sleep too well.. I am not feeling good today. Taking a bit of time to get myself out of bed and to the hospital .. heading out to the hospital now - 9:30am.

Jordan had a night full of pain and didn’t sleep well. I would have thought he would sleep well with being put under for surgery.. I guess his “grogginess” wore off. I didn't stay long. I left him to just rest and let him take a break from thinking about doing any schoolwork.

Surgery Day - Take 2

2011-11-26T23:02:00.000-08:00

8:30am So apparently Jordan had a bad night as when he was trying to get up for the washroom in the middle of the night he accidentally yanked on his chest tube, so was in pain all night. Of course in true Jordan fashion, he found a way to blame his mother for that (even though I wasn’t even there). Tube output was minimal overnight so I assume they will be taking it out today.

11am Dr. Bond came in and said that the x-rays still show that there is fluid in the lungs, so they will leave the tube in awhile to drain more. Jordan is off the subq dilaudid so he is not enjoying having a bit more pain. They are doing oral meds only now to try to wean him off to go home. Made him catch up on some UFV classes and now he’s having a nap (his new favorite thing). Doc says surgery is not off the table, it’s still a wait and see game.

11:31am Dr. Bond came in again and said he doesn’t like something in the X-ray (looks like there is something building up in the lining of his lung) so they are putting him on Level 1 for surgery and hopefully be in there within the next few hours. Jordan is upset as this makes him even further behind in his classes. They are hoping to operate by 4:30pm.

1:14pm Dr. Altaf came in and had me sign some paperwork for surgery, including on signing off on a possible thoractomy. I do NOT want Jordan to go through that hell.

4:38pm he is being prepped for surgery.

Dr. Bond is going to do it and says it will be quick and short (10-15 min) and that he won’t do a thoracotomy .. Dr. Bond is great! They wheeled him in just before 5pm and I quickly went out to White Spot for a burger and fries for take-out (yes, it made me feel horrible later). Just as I walked back into the hospital to the surgical waiting area, Dr. Bond walked out and told me that it was the original surgery spot that had somewhat opened and was intermittently leaking. Any type of extended movement was just causing it to tear and leak more. Now on to the next leg of recovery .. again.

7:09pm - the nurses let me go in to post-op to wait with him..

His blood pressure is good and he is doing well (although totally groggy). Will wait until they take him upstairs and then once he is settled head off to home again and try to get a good sleep before coming in the morning. Amy (former neighbor) came to help out with the kids in the afternoon so Kirk could come in to see Jordan before the surgery. Kirk headed back home by 8pm and I got home very late.

2011-11-25T23:00:00.000-08:00

8:15am Dr. Bond wants to do the surgery to clean everything up inside. Not sure when that will happen but it will be today (he says). He hasn’t eaten in a week and would really like to start. He actually is almost back to his normal self today - very good to see. He asked me to wash his hair and says he now feels a bit more human. Julianna is actually due at the hospital here in Surrey today for a review by a heart specialist. Last check at the pediatrician revealed something she wanted a specialist look at.

3pm Jordan is very grumpy and hungry. They won’t let him eat in case a surgery time opens up. Apparently they want to do another x-ray. Julianna’s appointment turned out okay. She just has smaller arteries which creates the heart murmur. Finally some good news.

4:30pm - the x-ray shows less fluid in his lungs so the doc says we will wait it out and everything should resolve on its own. If the leaking stops altogether we will take the tube out tomorrow and hopefully be home on Sunday. He is very fatigued.

2011-11-24T22:57:00.000-08:00

9:30am They made Jordan sit up in the chair to prevent clots in his legs. Very painful for him and created some nausea.

And also brought out a new talent for swearing. Just waiting on an x-ray to see if there is any issue with his lungs as he has been saying he feels like there is another bubble in there. They also want to do a CT scan (done at 2:26pm).. should have results back by 7pm to get a clearer picture of his lungs.

4:47pm .. the tube has been leaking a lot more in the last hour. Seemed to kick in after the ct scan.

5:08pm Apparently the surge of blood from the tube isn’t common. There are reasons for it that can explain it but Dr. Bond might take him back into surgery. He said the CT showed some clots that need to be cleaned out. They might come out on their own but he’d like to just do a clean run and make sure (via scope) that it’s all clean in there by removing the clots and cauterizing or stapling that problem spot. Will do an x-ray later tonight to help decide whether they operate or not.

Back to Surrey

2011-11-23T22:54:00.000-08:00

10:40am .. Jordan is in extreme pain. They gave him a double dose of demerol but it’s not working for the pain. We are waiting for a bed to open up in Surrey, but don’t know if that will even be today.

11:25am was informed that an ambulance will be coming to pick him up and take him to Surrey as a bed has opened up. Still in significant pain.

(Ambulance arrived at noon). He was too weak to get on their stretcher so they had to slide him over on to their stretcher.

Arrived in the afternoon in Surrey.

2:32pm Carolyn brought me lunch (starbucks coffee too!). Jordan is npo (nothing by mouth) in case they want to do surgery. He is on the same floor as last time but this time in a “treatment room” with no windows BUT at least it’s private. Haven’t seen the doc yet as apparently he is at Royal Columbian. (3:36pm)

3:58pm saw a different doctor (Dr. Altaf). Apparently he says it’s just a waiting game now. Regular blood work to see if he is losing blood over the next day or two. They will operate again to clean things up in there. Until then they are doubling up on his pain meds to manage the pain and keep up with the x-rays.

Downhill once again

2011-11-22T22:46:00.000-08:00

Just popped in to see Jordan quickly in the morning while Marilyn watched the kids. Brought him a gingerale. He said he didn’t sleep well and was restless all night. I asked if he asked for demerol and he said no (grrr) .. so I asked the nurse to give it to him and left the hospital to come back home. Apparently they won’t give him pain meds unless he asks for it.

He ate an egg for breakfast -- so that is a good sign that he may start to eat again (although he said he was still feeling nauseous). He said he is bored laying there in the hallway only having a partition to look at, but said he isn’t well enough to play any of his DS games yet. I am just waiting for Kirk’s dad to come by so I can go over there to see if there is more info from the nurses as to what is going on with the fever and antibiotics, etc. (as I was only there literally a few minutes). He should be here in another hour and then I can go over. His temp is up to 37.7 and that’s all they will say. I will have to wait until the doctor comes and am told that it can be any time between now (10:53am) and 10pm! All that will be done in the meantime is periodic checks of his temp. Frustrated.

12:58pm resting heart rate is 103. Met the manager Trena . asked if we could get Jordan out of the hallway as this is NO place for someone this sick.

2pm .. said he feels like there is a bubble in his lung and has difficulty getting a good breath. They will take him for an x-ray soon.

3:15pm .. they just gave him his FIRST dose of antibiotics now!!

5pm .. nurse said that the doctor wants to do a CT with contrast. Still haven’t seen any doctor.

8:54pm .. CT shows what they think is 2 liters of fluid in his chest. Doing another chest tube to drain it and then transferring him to Surrey by ambulance in the morning to their surgery ward under the care of Dr. Bond again.

10:15pm they did a heavy conscious sedation. They inserted the chest tube but he was having difficulty breathing and is panicking because of that.. they are doing an x-ray to see if the chest tube is in properly.

It turns out it’s just that the fluid escaped very quickly from his chest (1.1 liters) so that is what was so difficult for his body to handle. They are going to do a blood transfusion as well (2 units) as his hemoglobin went down to 88. Also, they are going to give him an actual room upstairs. Just gave him a few shots of fentanyl.

Hallway

2011-11-21T22:43:00.000-08:00

When I arrived to the Abby Hospital in the morning, I found they had admitted him to a hallway .. no rooms available. I couldn't believe as sick as he was, that he was placed in a hallway!

By 5pm, I was told he was running a fever. They decided to start antibiotics, but it seems they didn’t have any in stock and will try to get some tomorrow. Doesn’t a hospital have access to this kind of thing? Very frustrating. He is still in a lot of pain and still isn't eating any food (too nauseous).

A turn for the worse

2011-11-20T22:31:00.000-08:00

Jordan woke up not feeling well. I took him in to Abbotsford Emerg at 10:30am while the rest of the fam headed off to church. They took an x-ray (after hours of waiting) and informed us at 1:22pm that they wanted to do an ultrasound and blood work because he was feeling dizzy when he stood up for the x-ray. They said his hemoglobin was 116 (should be 160) most likely to him losing all that blood post-surgery. This would explain the dizziness. We are supposed to go to the in-laws for a family dinner this afternoon, and Jordan still wants to go so I tell Kirk to postpone his departure to see if Jordan will feel better and then be able to come. Rest and more rest, they say -- go home and rest. It was 3:00pm when we get home from the hospital.

He is pretty weak and in lots of pain so we up his T3s. Jordan wanted to stay home and I felt it was best to not leave him alone. He doesn’t feel up to going. By 7:34pm his pain was so severe he could hardly walk. It was a challenge to get him into the van to get to emerg in Abbotsford. He said he couldn't take it anymore (the pain). He can barely breathe. While in the triage area, he threw up everywhere all over the floor (and himself as the small dish he was holding couldn’t hold what his stomach threw out) Saw Dr. Delvecario in emerg. He is in so much pain he cannot move and doesn’t even open his eyes or choose to communicate much.

8:30pm .. came in the treatment room and brought a portable ultrasound.
8:41pm .. found fluid in his lungs so they are going to admit him.

They think he will stay for a day or two until he recovers. All the tests look okay and the doc thinks it’s just the post-op pain gone crazy. They will try to keep the pain down with IV Demerol (the only pain med that seems to be working as Morphine makes his blood pressure drop).

I have to do a bunch of emailing to profs, etc. to cancel things for this next week so I head home and let him sleep. They are keeping him in Emerg until morning and they will admit him upstairs.

He is still in a lot of pain... the worst to date.

Merry Christmas! (Day 3 home)

2011-11-19T22:24:00.000-08:00

Jordan spent the day resting and studying, but improving. He was much better today! Kirk decided to get festive and pulled out the Christmas tree to decorate. The kids were super excited and decorated it in true kid fashion, but Jordan was only allowed to rest and watch :)

Jordan's 2nd day home post-surgery

2011-11-18T22:22:00.000-08:00

Feeling very tired but not too bad with pain. Lots of study to catch up on his classes. He is sore and moves slowly and has spent most of the day just resting.

Surrey Hospital - Day 4 ~ going home!

2011-11-17T22:16:00.000-08:00

I slept about 6 hours last night. Still really buzzy but have been having coffee every morning since Tuesday .. just to stay awake each morning.

Chest tube was taken out at 8am .. felt horrible. The nurses were the ones in charge of taking it out and they did a great job at being careful.

Due for another x-ray at 10:30am. He was able to get up and move to the washroom now that the chest tube was out and not hurting him when he moved.

At 12:45pm - he was discharged and heading home!

On the way home I said I would go to the university to quickly grab his homework, but that turned into an hour's worth of walking around from classroom to classroom, finding all the profs. Jordan got really tired and probably overdid it.

He spent the rest of the evening laying down, wiped out.

Surrey Hospital - Day 3

2011-11-16T22:07:00.000-08:00

I actually had a great night sleep last night. Kids are all over their fevers and coughs. Jordan was doing well this morning and asked to play his DS. Improvement!!

Jordan, after a lot of dilaudid, was able to get up and walk a bit and use the washroom. His pain is a little less and he keeps forgetting to cough to stave off pneumonia. I will go in tomorrow morning again.

Dr. Bond said they will leave the chest tube in another day. The fluid leaving his chest has slowed down so they will continue to monitor it. They will up his pain meds to see if they can get him out of bed and walking around. (he is still too scared to move because of the pain). He still can’t cough (which he is supposed to do to exercise his lungs). I decided to go home a little early (12:45pm) so I could spend some time with the kids ... been a few days since I've seen them since I leave before they wake up in the morning and get home after they are in bed.

Jordan called me on the phone later and told me that they will pull his chest tube out in the morning and he can go home.

Surgery Day!

2011-11-15T21:56:00.000-08:00

I had only fallen asleep at around 5am, only to have my alarm wake me up again for 6:00 .. as I was heading out the door at 6:30am to head into Surrey. Jordan slept okay but was still in pain from the chest tube. At 9:55am was wheeled in for surgery to fix the “bleb” on his lung.

At 1:00 pm he was back from surgery and quite groggy from the anesthetics.

Had a bullectomy and a pleurectomy .. left lung lobe wedge .. as the spot was on the lower part of the lung, rather than on the top. Had a rough day of pain and not being able to move much.

Dr. Bond performed the wedge resection of his left lower lobe. Later at 3:00pm Gary & Joy came in to visit him as they were in town. He was a bit more awake at this point and it was so great that they could take the time to come and see him.

By 4pm we noticed there was a lot of blood coming out of his chest tube post-surgery, more than normal. They made a note of that to watch it, do bloodwork and an x-ray. Jordan is not eating (hasn’t for a few days) and it in a lot of pain. Will head home shortly and come back in the morning.

Jordan wants in the game..

2011-11-14T23:59:00.000-08:00

Monday morning .. I had scheduled my van to have the snow tires put on at 8am. Why did I do that? I just spent an entire Sunday in bed, unable to move and I really didn't want to get up early to take my van in. One thing with MS .. you get really good at pushing yourself when you really shouldn't be pushing. I am feeling a little better so I don’t have to be in bed, but feet and hands still buzzing and still feel off and very wasted. I made myself get up, and head over to the auto shop. I thought, at least I'll walk over to A&W and get them to make me some eggs while I wait. Little did I know more stress was looming around the corner.

Only 15 minutes in to my venture, I got a phone call from Kirk asking me "Where are you"? I thought that was rather interesting, considering he knew where I was. He proceeded to tell me he had heard a frantic knock on the front door, and found Jordan standing there telling him that his lung had collapsed again. Looking past him, Kirk saw that Jordan had dropped his backpack on the road. Kirk at that point called me.

I asked Kirk (on the phone) if Jordan could walk over to the hospital. (You see, the last collapse he had was minimal and he was able to do almost everything normally). Kirk told me Jordan could barely move. I told him to quickly take Jordan to the hospital himself and I would be back as soon as I could. I went in to see Jordan in a few hours as I knew the course of action would be to get x-rays, which is time-consuming. When I went in to see him, he had already had his x-ray and I was informed his collapse this time was 50%. The nurse told me that a doctor in Surrey had a surgical opening for the next morning. My first instinct was "who is this doctor .. is he any good? Should I trust him? I don't even know him!". Then they told me his name was Dr. James Bond. Seriously? Ok now I am more worried hehehehe ..

Bottom line -- he needed help and so we agreed to sign off on his transfer, which would happen after Abbotsford docs inserted a chest tube. It wasn't until early evening that the chest tube was inserted and the ambulance called for the transfer. Until that time, he started to feel a little better, and asked me to bring in his DS to pass the time...

When it was time to do the chest tube, the attending doc did it without any meds.. just cut him open and inserted the tube.

Rather painful!! Jordan was NOT impressed (neither was I).

Shortly thereafter Kirk came with the kids to visit Jordan. As the kids were saying hi, the ambulance crew walked in .. took one look at our crazy family (two kids in casts and Jordan in the bed with his nasty chest tube), and with a suspicious look on one attendant's face, said "What kind of family ARE you?". Rather humorous.

As Jordan was transferred by Ambulance to Surrey Memorial Hospital, I drove home and packed up a few things for Jordan and headed off to Surrey to meet him there.

It was now nearing 7:30pm and I drove in to Surrey to see how he was doing. I was told surgery would be sometime the next morning and told to be back by 7:30am to talk to the doctors. So at 10:30pm, I headed home. Once I finally hit the pillow, my mind was racing and my stress level through the roof. I couldn't believe all the craziness our life had taken on in the last month.

I proceeded to have a brain which did NOT shut off .. followed by insomia and didn’t sleep that night. Talked to merv & dorrie at 3am .. as they were up .. having their own issues with sleep.

Another down day

2011-11-13T20:20:00.000-08:00

I was in bed entire day, slept most of it.. ears ringing, hands and feel super buzzy.. everything just felt off.. horrible feeling.

Yeah his antibiotics are done ...

2011-11-12T20:19:00.000-08:00

I started to crash today .. didn’t sleep much last night (or the last 8 days!)... had a 2 hour nap in the afternoon but woke up feeling MUCH worse. Now at 10:30pm still feeling horrible. I took some cold meds (just to see if it would make me sleep better) and hopefully I will sleep. Tonight is Daniel’s last 3am dose of antibiotics .. that is the hard part of having to wake up nightly.

A smelly surprise ..

2011-11-11T21:17:00.000-08:00

I didn't have to take Julianna in to the hospital last night. It seems the steroid puffers are finally kicking in for Julianna and her breathing is better.

It's been such a stressful month. I got a call from Safeway, asking if I was going to be home today. Odd, I thought. I didn't remember filling a prescription? They then proceeded to tell me that I was going to have some flowers delivered. Shortly thereafter, someone delivers a dozen white roses, with Keg & Starbucks gift cards!! Wow.. what a wonderful and much needed surprise!! I don't know who it was that sent them .. (it was an anonymous gift) .. but THANK YOU !!

Julianna's fever continues

2011-11-10T21:14:00.000-08:00

Julianna has now had her high fever for three days. It takes constant doses of Tylenol & Motrin to keep it below 39.9. She has developed a cough that's affecting her breathing.

10:30pm .. thinking I may have to take Julianna in to the hospital tonight, her breathing and cough are quite bad.. but have been using essential oils at bedtime which seem to help.

I am still up at nights giving Daniel his antibioics which have to be given to him at 2am every night.

.. and the fevers come again ..

2011-11-07T23:12:00.000-08:00

Julianna wakes up with a fever in the late evening, 39.8 and saying her head hurts. Up all night watching TV with her. .. didn't someone tell her we haven't slept for days because of all the hospital visits and casts?

Ryan doesn't want to feel left out ...

2011-11-06T21:02:00.000-08:00

Daniel had a good sleep, managing to keep his foot elevated in bed as suggested. The doc told us to have him stay off his foot for at least five days, so for the first few days we figured we'd let him just stay in our bed in our room. It was probably his first "breakfast in bed" ... so we asked what he wanted and it was an A&W Breakfast Burger. :)

Off I went to the hospital to rent some crutches for Daniel -- so at least when he needed to use the washroom he could stay off his foot. Shortly thereafter I heard Julianna crying. Apparently she had fallen down the basement stairs in the morning and scraped her leg. Thankfully no other injuries. Ryan later in the morning, takes Daniel’s crutches and decides to go down the upper floor stairs, but tumbles down tangled in the crutches and cuts his face and is screaming saying his arm hurts. I was SO done with hospitals having done the procedure with Daniel three times and only getting a few hours sleep last night. So, I pointed to Kirk and said "I am so done.. it's YOUR turn". So, back in Abby Hospital for 5+ hours waiting to get an x-ray. After waiting for most of the day, the x-ray showed a buckle fracture. Kirk & I then traded off as he had a meeting to go to. Ryan was fitted with a cast and was told it would be on for 3.5 weeks.

When I think of how Julianna also fell down the stairs .. to think that I could have had three kids in casts within 24 hours.. unbelievable!!!

We are soooooo overly tired.

And you thought it was done ...

2011-11-05T20:32:00.000-07:00

Daniel told me his foot hurt a lot throughout the day. Early evening he shows me there is blood on his hand and it’s coming through his band+age on his foot. We took the bandage off and it was then we realized that the stitches had broken and the wound was completely gaping. No wonder it had been hurting so much! We paged Dr. Vershere and she asked us to come back in to Emerg at Children’s and said she will meet us there. Really? It's 8pm ... I don't want to go back again!! Kirk & I packed Daniel up into the van and asked Jordan to babysit the other kids who were in bed.

The doctor met us there and they set us up.

This time at least Kirk was there to be the "supporting" role for Daniel. I didn't think I could do it again -- listen to him scream and plead for help because he's in so much pain. So, as she inserted the needles into his foot to freeze the area, I sat there, listening to his screaming and rubbed his leg and let the tears pour from my face. What a long haul this little guy has had to endure. Kirk was great at trying to get him to stay as calm as possible. Looking back I realize he was a brave little boy amidst the screaming, because I realized that even through all that, with his body shaking, he kept his right leg completely still for her to do the stitches, etc.

It dawned on me that it was probably the fall from the operating table the night before that broke the stitches. He probably not only hit his head on the cupboard, but probably also knocked his foot as well.

Dr. Verschere said we were one crazy family and we should have told her in advance that we do things the hard way (ha ha). So said said she wants to put a cast on his foot and start him on some heavy antibiotics to prevent infection. Also, instead of the regular two weeks for stitches, she said we'll leave them in for three weeks. Sure, he'll most likely have scars from the stitches, but "with the way our family does things" .. she'd rather be on the safe side and leave them in longer.

On the way home, Daniel was so drugged up, that we had difficult staying upright in his booster seat. Luckily, we had the full booster seat for Ryan in the car, which enables you to secure the shoulder seat belt strap in the right place, and also has sides to keep your body from falling sideways. That was the trick! He stayed in his seat the rest of the way home. We didn't get home until after midnight, and I still had to go to Pharmasave to fill his antibiotic prescription for the next day. I don't think I got in to bed until 1am . how exhausting!

Little did we know this was just the calm before the storm ...

Daniel's foot operation - Take 2

2011-11-04T20:24:00.000-07:00

Daniel went in for his 2nd operation on his foot to have a mole removal. They are doing it again because of the recent infection and the doctor feels if we do it again, it will be a clean cut and heal faster. He was due in at Children's hospital by 8am. As he was so apprehensive regarding the pain that is involved in this procedure, they gave him some medication to sedate him (yet remain awake) while Dr. Verschere did it again. Still extremely painful. He screamed so much I'm sure the entire hospital and all of Vancouver heard him. Poor guy! I left the room to use the washroom and reminded the nurse in the room that the doctor had said we needed to watch him as he was sedated. (he was still on the operating table). Apparently the nurse didn't take the instruction as too important because when I came back from the washroom, I was told that Daniel had fallen off the table and banged his head on the cupboard. (What!!??)

The doc told us to take it easy for the next week and let this heal.

And here comes the fever again ..

2011-11-02T20:16:00.000-07:00

Have been feeling off for 3 days now. It's the start of my cycle again. Am wondering if there is correlation between degradation of health and my cycle. Just achy all over and inside when I breathe, and minimal energy. Doesn't keep me in bed but I feel like I just want to lay down all day.

DANIEL - Daniel with 40 degree fever for days. Today's fever at 7:30am was 39.9 .. taking motrin then his fever went down to 39.3 at 8am. Not sure if it's due to his foot infection or not. Ended up in Hospital at 9pm because he was delirious .. but back home shortly thereafter and they told us to give Tylenol & Motrin together to work on his fever.

Daniel, cont.

2011-11-01T20:16:00.000-07:00

Daniel complaining of dizziness again and also started a fever.

Happy Birthday!!

2011-10-27T09:17:00.000-07:00

It's hard to believe it's been a year since my due date. Still feels like I heard the words "no heartbeat" just weeks ago. Oh how I wish I were celebrating your 1st birthday, my precious one. Jesus, please give my baby a big hug from me!

How was it to be that I now am robbed of such joy?
Of watching you grow or finding out if you’re a girl or boy.
Never did I get to hear your cries or even see your tears,
Or kiss your little brow and hug away your fears.

I am just left here now with pain and few memories,
Of the days that were happy with you inside of me.
For you were loved and wanted oh so much,
What I would give just to have felt your touch.

The hours crawl by yet the time does not seem to slow,
I want to scream out to the world you are gone, why don’t they know?
How is the world still turning when I feel it should have stopped?
Why are people laughing and living when it feels like I can not?

Not enough tears can be shed to express the love I have for you,
No words can describe what I all wanted to be able to do.
I would have just held you and breathed in your sweet smell,
Shouted with joy and phoned all the people I wanted to tell.

But this time I called loved ones with the sad sad news,
That too little were you to live among us and I was meant to lose.
But nothing will ever erase those twelve weeks we had together,
For a piece of my heart you now hold always and forever.

Daniel's Foot - Again?

2011-10-25T20:12:00.000-07:00

Last week Daniel had fevers off and on and dizziness. I'm not sure if that was a precursor to the following or not ...

Took Daniel to Abbotsford Hospital emergency as his foot got infected post-surgery. The doctor took a look at it and said he wanted to lance it .. to which Daniel had a panicked look on his face. I asked if he could prescribe antibiotics and I would contact Children's Hospital and let them deal with it. He agreed and started antibiotics.

Copaxone

2011-10-13T20:07:00.000-07:00

Saw Dr. Bozak, told him I am off copaxone.. he didn't seem to mind too much. Will see him again in spring. Time to START checking out Brain Gym more!!

All fingers SUPER sensitive and painful.. feet too.

Entire Month of September - Digest Version

2011-09-30T19:55:00.000-07:00

Sept 5 - SO SO tired.. hear that all the symptoms will go crazy when you try to kill off yeast. My throat is still bugging me, I'm tired and really achy a lot .. hoping that the feelings I've had all these years may not be attributed to MS but perhaps the yeast? Wondering how long it will take to kill it off.. is there a test to do? Getting ready to leave for Seattle tomorrow. I am wondering if there is a pattern of always feeling crappy with the start of my cycle.. will need to watch that.

Sep 8 - feeling okay the last few days. Seattle has been fun.. lots of swimming. I actually got to play a lot with them in the pool today. That felt awesome. Just a few minutes of fading, but might be due to lack of foods I'm able to eat. My sore throat is gone or only there minimally. Taking silver orally, lots of grapefruit seed extract too and chlorella. Heading home tomorrow (the 9th)

Sept 9 - woke early (6am) with a really bad leg pain, maybe nerve pain? Took advil. Felt like there was major pressure in my lower LEFT leg from the knee to the ankle. Even hurt to walk, I'd get shooting pains up my leg. Arrived home from seattle at around 4:40pm.

Sept 10 - had okay birthday, busy. Went to a movie with Kirk and had movie popcorn. Didn't feel too bad. Sucks turning 45.

Sept 11 - munched on leftover movie popcorn in the evening and within the hour, felt a crash. must have been the popcorn. Bloated stomach and increased nerve pain and tingling.

Sept 12 - feel a bit better today, although still tired. NO MORE POPCORN. Yelled out loud today abruptly and it affected my throat.. hurt to talk a little after that.. odd.

Sept 14 - heading up to Summerland to see ROB (blood analyst). Spent morning at Sun-Oka beach. Said blood was good, need to try brain gym to calm my brain down.

Sept 15 - Ryan's first trip to Jane .. said he had a parasite.. nice...

Sept 16 - Daniel at Dr. Verchere for plastic surgery... busy day, rushing a lot.. did that attribute to another crash? (the following day)
ALSO - VISUAL DISTURBANCE... for about 30 minutes, I had a giant C shape on my vision, electrical like years before... lasted for about 30 minutes and then moved to the left for a few minutes and then was gone. During the episode, it was difficult to see things as it was right in the middle of my vision.

Sept 17 - feeling terrible upon waking.. but only had 7 hours sleep though. Weak and achy inside. SO SO YUK. Have to go to a bday party today in Langley.. not up to even getting dressed. Daniel's foot is hurting now.

Sept 18 - woke feeling yucky and fluish again.. when will this end??? had a americano today.. (half shot) ..felt not too jittery after. just really achy all day and tired. Need to figure this out. HAND STARTED TO BECOME COLD TODAY.. haven't had a circulation issue in months.. sad :(

Sept 19 - mid afternoon I got very weak.. and my right leg is very very weak.. not sure what is happening... my body feels like it has no strength. Increased buzziness in my right lower leg and both feet.

Sept 30-Oct 2 - in Whistler with helga, deste & rachel. Felt pretty good except after eating two chocolate bars from rogers chocs. Don't do that again! Feeling decent lately except for being tired. feet and hands still buzzing though .. it's a constant sensation (and pain) that never ends.

What is the Answer?

2011-08-28T11:53:00.000-07:00

Ok, just when I think things are getting better and I'm hopeful for some good days, I crash again. I just came back from a family vacation on the Washington coast, and I was, each day, starting to feel better and better. On the way home last night, however, I could feel my decline setting in.

What's the key to this whole health thing. Is it environment? I definitely did love the cool ocean breeze. Is it diet? Perhaps it's just that I need to stay on holidays and never come home? I wish I had the answer.

I did the "normal" thing for me, sent my family off to church without me as I lay in bed. I know I'm supposed to be longing for things not of this world, but all I want right now is to be part of my family's lives, and be normal.

I'm still off the copaxone injections for at least a few more weeks. I need to get rid of this sore throat (came back last night) before I start up again.

PS .. did you know that winter is just around the corner? WOO HOO!

Holiday from Copaxone

2011-08-14T20:59:00.000-07:00

I haven't written much. It hasn't been a very good month. I still can't get rid of my sore throat and we can't figure out why. My neurologist agreed with me to take a break from my daily injections (for a month) to see if that is what may be causing it. It's been going on for too long and I should have gotten better by now. So, it's been three days since I've not injected. I must say that I'm VERY happy to not have to do that; however, I've also had a few small mini-crashes as well.

Last night I could feel the energy draining from me. I woke up this morning still feeling pretty rough, but as I had a long day ahead of me getting family photos done out at a park, I had to push through. We spent the entire day with extended family which was nice, but I was still tired. Tonight again, I feel my body declining. I would have to say it's worse than last night's draining feeling, and tonight my throat is much worse and I feel feverish and rather like a flu (which is my normal crash-like symptoms).

I'm very discouraged. I am leaving for holidays soon. It will kill me if I am to lay on the couch while my kids are playing on the beach -- without me. My heart is broken. God, I know you hear my cries. When will you rescue me?

A Quiet House

2011-07-24T10:42:00.000-07:00

Just when I thought the antibiotics were working, I spent most of the night coughing. Even the strong cough syrup with codeine did nothing. It wasn't until 5am that I finally fell asleep.

The house is quiet. The family went off to church without me -- again. I'm sure they all think he is a single dad over there. Trying to remain positive, but it's difficult when it feels like I just exist these days.

A friend pointed out that copaxone can have side-effects, such as the ones I'm experiencing (weakness, nausea, dizziness, bronchitis, etc.) so I'll have to check on that with my neurologist this week.

Probably best to try to nap now while everyone is at church..

Update

2011-07-22T15:30:00.000-07:00

It's been a month since I've posted. Much has happened, but I just haven't had the energy to post it. For my records, here is a quick breakdown of what has happened:

June 24th - went to Osoyoos with a friend. Spent too much time in sun on the Sunday, 26th, and by evening, I had a total crash. Spent the next 4 days in bed.

June 30th - saw Neurologist.. said the spinal lesion had gone away on my neck (according to the MRI comparison from this year's MRI and the year before). He said it was a possibility that the CCSVI procedure I had helped the healing process for that lesion.

With respect to the crash, he said I got overheated and need to be careful in the heat. (This is the first time I've ever reacted to heat). He also said to stop injecting in my legs for copaxone. That is good news as I was reacting badly with huge swollen areas. Then as of Sept. inject every other day for injections. That will be nice to skip every other day.

July 1st - spent the night in Vancouver for the fireworks.. fun, but still really weak and tired. Heat sensitive that day as it was fairly warm.

July 9th - Woke up at 2am very sick. Not sure what happened, but I felt like I was being poisoned, very toxic feeling. Spent the next few days in bed, extremely nauseous.

July 11 - At 4am, I finally went to my local hospital emergency and got an IV for hydration and nausea. They took an x-ray of my gallbladder, as I had described that any time I ate, my stomach would bloat quite a bit and the nausea would increase. The x-ray ended up being clear, showing no issues with my gallbladder.

July 14 - Still not being able to eat food. Saw my doctor and he gave me some meds for my stomach.. nausea still bad.

July 15 - noticed improvement in the nausea with the meds. Slowly starting to eat chicken broth and toast (gluten-free as usual).

July 15 - went up to Peachland to visit some friends. I didn't sleep well all weekend and by Sunday I was feeling sick again. Drove home that day and by evening I was in bed again.

July 16 - 21 - spent most of that in bed.. extreme weakness, dizziness and something developing in my chest (a strange feeling when I would breathe).

July 21 - had a few very strange coughing fits .. out of nowhere. Very strange.
By evening, my voice was getting deeper and huskier.

July 22 - Woke up in the morning and had lost my voice. Had another coughing fit in Safeway (that was embarrassing). Went to my doc and he put me on Biaxin and some codeine cough syrup. Feeling really dizzy and weak today. No cold, fever or anything, just this weird voice and intermittent times when I get a tickle in my throat and I have to cough for a few minutes incessantly (seems to happen every 3-6 hours).

Feeling like a very long month. I'm glad the weather has been cool, not only for my aversion to heat, but also because I don't feel as bad not being active with family. My kids are dealing with the affects of my being in bed. They often mention how sad they are that I cannot play with them, etc., which breaks my heart.

I keep plugging along, day by day. Life just feels long though. I think I'm too tired and weak to feel discouraged and get depressed. I just don't have the energy for that :)

Anyhow, just an update as to why I've been so quiet.

Still, good news about the change on the MRI! :)

You don't need to see your Starbucks to enjoy it!

2011-06-16T10:04:00.000-07:00

Never a dull moment in this house. Last night, while doing some prep-work on a school assignment for Daniel, I had a sharp pain in my eye. I thought it was a good idea at that point to take my contact lenses out. Something realllllly hurt in my right eye, yet I couldn't see anything. My lens didn't have any tears or breaks, so I couldn't figure out what it would be. I decided that whatever it was would work its way out overnight, and went to sleep.

I awoke at 6am from a sleep filled with discomfort, only to realize that my right eye was in a lot of pain at this point. I decided at that point it was probably the best idea to drive myself (with one eye watering the ground as I walked) to Emergency a block away to get myself checked before Kirk went to work. Besides, everyone was sleeping -- this was the best time. It took until 7am to be seen, but they discovered two small corneal abrasions, thus explaining the pain. The inside of my upper eyelid was also very inflamed. I was given some numbing drops for the pain if it got too severe and some antibiotic drops.

I have to drive to UBC today for a dental appointment (one of many) for my son Ryan, so getting this taken care of ASAP was important. I'm still not sure how the driving will go as my eye is very painful and it's hard to keep it open, but I suppose the numbing drops will do the trick to keep me from feeling it for about an hour at a time -- just enough time to get from Abbotsford to Vancouver.

On the way out the door from Emergency, I was enveloped by the cool and refreshing air of the morning -- my favorite time of day. I absolutely love being out early in the morning, before many people are up -- experiencing the cool weather and quietness of the day. It was then my inspiration took hold .. GO AND GET A STARBUCKS COFFEE in the hospital lobby! Yes, inspired indeed! I grabbed myself the decaf (yes, I know... "what's the point?") Americano for myself and the strong coffee of the day for Kirk and got home by 7:40am. I'm sure I looked rather curious (or scary?) with one eye closed and weeping everywhere (the irritation causes it to constantly water). That's okay.. for upon the first sip of that glorious beverage, I decided it really wasn't all that important to see what I was drinking -- as long as I could taste it :)

Out of the Ashes

2011-06-10T10:54:00.000-07:00

A friend sent this to me today.. thanks Mandy!!

It was the day the world went wrong
I screamed til my voice was gone
And watched through the tears as everything
came crashing down
Slowly panic turns to pain
As we awake to what remains
and sift through the ashes that are left
behind

But buried deep beneath
All our broken dreams
we have this hope:

Out of these ashes... beauty will rise
and we will dance among the ruins
We will see Him with our own eyes
Out of these ashes... beauty will rise
For we know, joy is coming in the morning...
in the morning, beauty will rise

So take another breath for now,
and let the tears come washing down,
and if you can't believe I will believe
for you.

Cuz I have seen
the signs of spring!
Just watch and see:

Out of these ashes... beauty will rise
and we will dance among the ruins
We will see Him with our own eyes
Out of these ashes... beauty will rise
For we know, joy is coming in the morning...
in the morning...

I can hear it in the distance
and it's not too far away.

It's the music and the laughter
of a wedding and a feast.
I can almost feel the hand of God
reaching for my face
to wipe the tears away, and say,
"It's time to make everything new."

"Make it all new"

This is our hope.
This is the promise.
This is our hope.
This is the promise.
That it would take our breath away
to see the beauty that's been made
out of the ashes...
out of the ashes...
That it would take our breath away
to see the beauty that He's made
out of the ashes...
out of the ashes...

Out of these ashes... beauty will rise
and we will dance among the ruins
We will see Him with our own eyes
Out of this darkness... new life will shine
and we'll know the joy is coming in the morning...
in the morning...beauty will rise!

Oh, Beauty will rise
Oh, Beauty will rise
Oh, oh, oh, Beauty will rise
Oh, oh, oh, Beauty will rise
Oh, oh, oh, Beauty will rise

Easy as 1 - 2 - 3

2011-06-02T21:24:00.000-07:00

I had some router trouble tonight, and as I recently changed from a Linksys to a D-Link, it took a bit of research to find those settings. I am used to the Linksys and how it works and where to find the router settings. After a few minutes of searching I located the information I needed and once again reconnected my remote computer to my router.

This reminded me much of my life, and how I would prefer it to be like the Linksys setup -- easy, predictable and without effort. Easy as 1, 2, 3. The D-Link on the other hand, left me not only looking for answers to my questions, but also a bit baffled (albeit a short while), and a little perturbed that it was more difficult than I had anticipated. (In my opinion, I should be able to conquer any computer-related question in a matter of minutes).

I would love my life to be easy - predictable - without effort. When I got married, I thought AHA .. this is it .. the zen.. the end of the struggle. I now can continue on with my life into happiness and peace and tranquility. How I was wrong! I would have to say that the easiest portion of my life was before I was married. Within our first year of marriage, it revolved around a house fire and a multitude of lung collapses for me. What a way to start my "fairy tale" dream of happily ever after! It has been a definite laying down of dreams from that point on. After numerous lung procedures, I had to learn to cut back on my daily hour-long HARD bike rides. Hmm.. no more POWER Dawna. Ok, I can do this. But could I? After my first son was born, I was then diagnosed with a myriad of illnesses, from Irritable Bowel Syndrome, to Chronic Fatigue and Fibromyalgia. Life was definitely getting tougher and not on the happy road I had envisioned. Marriage was tough too. No doubt with all the hard times that were happening in our home. Our newborn son pretty much screamed the first two years of his life and no one told him that napping was something that babies did. (He was a premature colicky baby). But I digress too much.

What I am trying to get at is that I've had a slow process of cutting things out of my life over the last 20 years. It wasn't a harsh 'all of a sudden' paralysis like being placed in a wheel chair, but rather a slow (and sometimes torturous) peeling away of things I hold dear. Over the years, it seems more and more physical abilities have been taken away. Little did we know that MS held the key to that so long ago.

Through all those years of pain, both emotional and physical, as well as marital strain, somehow I end up here -- still full of emotional and physical struggle, yet coming out with a stronger marriage. I am very thankful for that. At least ONE good thing! But it is a day to day process .. one can never relax and say GOOD .. now I can stop working on that. No, I am learning that in every area of your life (for your entire life) you need to keep working. There is no "happily every after" -- at least on this earth.

I have recently joined a ladies' prayer group. This is something that was a huge step for me -- for many reasons. One, I've always had issues with prayer -- or I probably should say "insecurities". Two, I always grew up relating to guys much better than girls, and so never really had many female friends. I knew, when I was asked to join, that this was something I had to press myself to do. I would not let myself say at the end of my life, that I gave up on something that might have produced in me more character, even though it scared me to death. I must say, the anxiety that wells up within me before each week we meet is not too pleasant, yet I have lately come to realize the source of this anxiety.

For my entire childhood, I have been very insecure. I was very skinny as a child and often mocked. I was often made fun of for many reasons. I don't remember ever having more than one friend at any given time. I was more a loner... all the way through high school. I always knew I was insecure, but lately I've realized that it has become more of a talent, so much so, that I've been believing it is my ONLY talent (to be insecure). Oh how Satan has lied to me all these years, and I've believed him. Yet, even as I write that, all the voices in my head still say, "that's because it's true. You have no value, you are stupid. You are ugly. You have nothing to stay. You do talk too much and no one really wants to listen to you anyway. You have nothing of value to give to anyone. If you were gone -- no one would notice." The list goes on and on. Why have I believed that all these years? It is amazing the power of those thoughts. I know they hold power because there are tears as I write this. I feel like a little child cowering in the corner. How does one break those thoughts? I think the first step is to become aware of them. Once you are aware that they aren't from God, you CAN fight against them .. but it will be a fight. It's all I know. It's who I've become. I am so thankful for this group of women that have accepted me and let me "dump" all my fears and insecurities on them. It is a big fight for me to not run away and feel like I don't belong -- like I'm the outsider who cannot bring anything of value. I will fight. I need to instill in my children that they have value because God made them special, just the way they are... how can I do that if I don't believe it myself. I WILL FIGHT!

I ran into a few songs today that have spoken to this subject in my heart. Both are from RED. (Yes the ROCKER continues to live within me .. I don't think that will ever change)

First .. . Death of Me and secondly Let Go.

Here is an excerpt on Death of Me and it's meaning:

In “Death of Me,” the band steps inside the throes of conflict as an emotionally wounded Michael Barnes laments, “You tear me down and then you pick me up/You take it all and still it’s not enough.” However, the unexpected twist behind the meaning of the lyrics is that YOU are the ‘you’ in the song. “The song is really a regretful introspective moment, where you realize that your own actions have led you down a path you never wanted to take,” says guitarist Anthony Armstrong. “You are the one who keeps tearing yourself down in some kind of vicious cycle that never seems to end.”

(feel free to MUTE and just read the lyrics .. but honestly? it's just not as good! tee hee hee)

The song, Let Go was a great expression to me of telling Satan where to go.. and that he cannot hold me. I am the Lord's and I will not listen to Satan's lies..

One day at a time..

Difficult Days

2011-05-29T21:06:00.000-07:00

My daily injections have migrated from 60 minutes of burning localized pain a day, to swollen areas the size of golf balls that itch like a giant mosquito has devoured you -- 24/7. My right leg has increasingly been weakening, to the point that walking around the lake is laborsome. Increased nerve pain in my left arm. Fighting with loss of hope (what's new?). Never thought at this age of my life that I would wholeheartedly say "Lord Jesus COME!"

Disciple - 321

Disciple 321 Lyrics:
I'm feeling everything's about to blow
I'm feeling everything's about to blow (Matthew 24:28,33)
321
I'm feeling everything's about to blow
Here He comes, undefeated, undisputed (Revelation 19:11-16)
321

Relentless earth, coming to collect (Hebrews 9:27)
Hidden from the awaited day of rest (Hebrews 4:3)
The feet that swell, walk the memories of late (Genesis 19:26, Luke 9:62)
Wrapped around the heart of a pity masquerade (Matthew 12:34)

Watch out
Get down now
No doubt
321 (Matthew 24:42-44)

The moon has turned to blood (Revelation 6:12)
Baptized in vengeance flame (2 Thessalonians 1:8, Revelation 6:10)
They shake at what's to come (Isaiah 2:19)
When He breaks the seals of pain (Revelation 6:7)

So roll back the prison bars (Isaiah 61:1-2, Luke 4:18-19)
For charity not fame (1 Corinthians 13:3; 14:1)
Till the streets will overrun (Zechariah 8:4-5)
With the tongues that shout the name (Philippians 2:11)

Endurance

2011-05-09T23:43:00.000-07:00

What is it that pushes athletes in a marathon to complete the race?
How do those with cancer keep fighting to the very end?
Where does the resolve to persevere "no matter what" come from?
Can it be produced by man .. or does it come from God?

I am convinced that there are those out there born with greater resolve to "endure". I am still struggling to become one of those people, but to me, it is a constant battle. There are many lies which I have grown up listening to, insecurities, which tell me I can't make it, God doesn't really care about you, you are insignificant, you are alone & abandoned. I don't know where those originated, but I struggle with those daily. Sometimes I recognize the lies and stand my ground, but other times, like tonight, I just don't have the resolve to do anything but cry.

I was late in getting home tonight and for my injection at the back of the arm, I need Kirk to do it. So it wasn't until 10:30 pm that I was able to get my shot done. Fine for me, as it's not something that I want to do, so delaying it a few hours is a nice break. It seems that as time goes on, with more "injections" tacked onto my resume, the pain following each shot increases. I am not sure whether I feel more pain than normal due to the lack of fat on my body (I am told this can make the injections more difficult/painful) or whether everyone feels this much pain. Seconds after the copaxone shot infiltrated my arm, the pain was excruciating. The ice pack didn't help. I sad down and just started to cry. Everything within me wants to just give up. I hear in my head 'how can you do this to yourself the rest of your life? You are basically writing off an hour of your day to intense pain, followed by bruising and sore spots for days/weeks after that spot is injected. This is too hard. Give up". I think it was sometime in 1990, when I was having lung collapses and certain procedures done to my lungs to try to plug the holes in my lung, that I felt the first "I give up, I just want to die" due to intense pain. Childbirth was like buying candy in a candy store compared to this procedure. Ever since then, it seemed I not longer had any ability to withstand pain. I would stub my toe and cry, feeling that same draining of all ability to cope. To this day, I just don't seem to have the reserves built up to fight against prolonged pain. Mind you, the years since that first procedure have all been physically difficult (with the exception of a few years where things were okay), so I'm not entirely sure if I would have been able to achieve a skill of "endurance" by this point.

I want God to heal me tonight -- to take away this horrible sentence of pain each day (needles) on top of the pain that is already there (MS). It seems surreal to me that the medical community cannot come up with something that will make MSers' lives easier, rather than making it more difficult. I guess I just need to find a way to recharge my emotional batteries, some way to fight against all the pain that comes my way -- a resolve to fight "no matter what". I need to find the motivation and the courage to endure. Seems an impossible task from where I sit right now. I know this is something that only God can do.

Please pray for my brother ..

2011-05-04T09:25:00.000-07:00

http://mervbest.blogspot.com/2011/05/mvi0976avi.html

Another quiet Sunday

2011-05-01T10:15:00.000-07:00

Well, I didn't make it to church yet again. Woke up feeling drained. I've been like that the past few days, where I have a few hours at a time when my body completely crashes. My hands are ice cold again. Not sure why that seems to fluctuate.

Injecting is going better than I thought it would, but definitely no walk in the park. I have to inject Copaxone daily, and for about 15-30 minutes after, it feels like a bad bee sting which swells up as well. Then comes the bruising. I figure after I keep this going for awhile, the kids will be able to play "connect the bruises" all over my body. It's hard to swallow that I'll be doing this to myself the rest of my life. The interesting part is that I may not see any benefit either. It's one of those meds that *might* help to slow down progression of the disease over the course of your lifetime, but it might not. You just have to wait to find out. Even then, you have nothing to really compare it to, because you don't have that twin (that didn't take Copaxone) walking beside you. It's something you have to do in faith.   The ONLY reason I'm following through with this is because I knew we couldn't afford the $1500 bill per month for this drug. I asked the Lord that if He wanted me to use this drug, then I would find a way to pay for it. We applied for financial assistance from the Copaxone Assistance Program, and they approved it. So, this is now all paid for. I guess I got my answer.

A friend of mine is also starting to take Copaxone, and she said the exact same thing that I said to my husband after starting to take it. I told my hubby, "it's like I feel defeated, that taking the injections is a way of me saying 'I give up, MS you win'..."   That's a hard one to swallow. You fight and fight and do all that you can to make your body as healthy as it can be.. supplements, exercise, etc. But when all else fails, and God doesn't heal you, where does that leave you?   It leaves me here, as a 'slave' if you will, to a life I didn't ever dream I would have. Depression is definitely always knocking on my door.

Today is a sunny day. Maybe I can muster up enough energy to go outside and play a bit with the kids. I need to focus on something positive.   Wouldn't it be nice to just take the fam and spend a month in Hawaii? I'm sure that would be not only food for the soul but for the body as well. Lately I've been (day) dreaming of how nice it would be to live on some land where the kids can go out and play in the "back 40" .. where I can look out at nature and feel the peacefulness of it (instead of the continuous year-long road construction on my street). I think I'm just missing spending time on my brother's property... it's almost like heaven there :)

I've had some fun comments from friends of mine who don't seem to share my affinity for "hard" music. (My husband is one of my greatest critics for my choice of music).   There is one song by RED that always speaks to my soul.. it screams (literally) how I am feeling inside.   It's like David in the Psalms that cries out to God from his heart, this song makes my heart well up and cry out to God for his mercy.

This is the "acoustic" version which I just ran across on the web yesterday, and it made me smile, knowing that maybe my friends would be able to stomach this version a little bit better. Dear hubby, and my closest friends (you know who you are), this is for you:

Lyrics:
And this is how it feels when I ignore the words you spoke to me
And this is where I lose myself when I keep running away from you
And this is who I am when, when I don't know myself anymore
And this is what I choose when it's all left up to me

Breathe your life into me
I can feel you
I'm falling, falling faster
Breathe your life into me
I still need you
I'm falling, falling
Breathe into me
Breathe into me

And this is how it looks when I am standing on the edge
And this is how I break apart when I finally hit the ground
And this is how it hurts when I pretend I don't feel any pain
And this is how I disappear when I throw myself away

Breathe your life into me
I can feel you
I'm falling, falling faster
Breathe your life into me
I still need you
I'm falling, falling
Breathe into me
Breathe into me
Breathe into me
Breathe into me
(I am yours)
Breathe your life into me
Carry me home to you

Breathe your life into me
I can feel you
I'm falling, falling faster
Breathe your life into me
I still need you
I'm falling, falling
Breathe into me

Breathe your life into me
I'm falling, falling faster
Breathe your life into me
falling, falling, falling
Breathe into me
Breathe into me
Breathe into me
Breathe into me

Bittersweet

2011-04-24T18:07:00.000-07:00

For times like this, God knew I needed my best birthday present ever. Let me explain.

I was nearing my 40th birthday. Things were great. I had my oldest son who had just turned 14, and two other little boys aged 2 and 4. Life was joyous and full of adventure (and perfect health, I must add). We had some friends from out of town come to stay with us for the weekend, with their two teen boys. I love being with friends and even more so for an entire weekend, especially my birthday weekend! It was an amazing weekend of laughter and filling up of my "friendship" tank! The best part of the weekend, however, was waking up on my 40th birthday, and noting a pink + on the pregnancy test. My birthday present was another little blessing! Little did I know it was a girl. I often tell Julianna the story of waking up that morning, taking the pregnancy test and realizing that my best birthday present EVER was her.. my little girl whom I will love and cherish forever. Jesus gave me the best birthday present that day. Often when I put Julianna to bed and pray with her, I will tell her "I love you, you're my ..." and I wait for her to finish my sentence with her cute little voice, saying "best boifday pwesent eh-voe".

Sometimes I can make it to church on Sunday mornings, other times, it's just too hard, either physically or emotionally. Today, despite my pain I decided to make an effort and go with the family. Worship was wonderful on this Easter Sunday, a time of celebration. However, something that happened last night made things a bit more difficult than I had anticipated.

With taking LDN (low dose naltrexone) for the past 3 nights, it can make your dream world a bit more vivid. I don't normally remember my dreams, but in the past three nights, I have remembered them all. Last night's dream was definitely a bittersweet one. I was talking with a friend about carseats and when it would be appropriate to change from a rear-facing seat to a front-facing carseat. It was at that point that the visual focus of this dream 'movie' panned over to the carseat beside us and I said "I won't be changing her carseat until another six months from now". Right there before my eyes was my sweet little baby girl, six months old. I promptly woke up. My heart was aching. Why would I dream of the baby I had lost last year? I thought it was odd that my dreams had gone from just sadness of loss to my baby having been born. I then calculated how old the baby would have been right now, and it is now exactly six months since my due date. Wow, exactly six months! How odd was that?!

I have been praying so hard, asking the Lord to heal this hurt, to fill the hole that was created upon this loss. Today feels as fresh and painful as the day I found out the baby had died. I ask God often WHY .. how long until you take this pain away. I have so much to be thankful for, why does this one loss have such long-lasting power over my heart?

I chose to get up and move on. It was only a dream. I would count my blessings and go to church with my family. Sitting just in front of us was a little baby, and Kirk knew I would find this difficult. Some of the songs we were singing were about God taking our pain, healing our hurts. I sang those songs in faith. I don't feel it, but I will sing it in faith. Tears brewed in my eyes, the dream really messing up my resolve to continue with life.

What really blessed me was during the coffee break some people came to pray for me as I sat in my chair, unable to move. I felt totally messed up. Both with physical pain and the emotional chains that had held me once again. Their prayers were encouraging and so supportive. I could at least say that I did not feel like I fight my MS battle alone. It was exactly what I needed at that moment. So thank you! (you know who you are).

After the service we engaged in worship once again, only this time, some people were rhythmically dancing to the music (in worship) but one lady in particular, came over to our side of the room, right in front of us and danced with a little baby in her arms. Kirk leaned over and said to me "wow, you're really getting your buttons pushed today, aren't you?" Big time. I just want this pain to go away. I know the rest of the world will continue to have children. I know there are those who don't have any and wonder why I'm having such an issue when I already have four. I really don't know the answer to that. I just know there is a huge hold in my heart, and it doesn't seem to heal, despite my best efforts (and prayers).

Just when I thought the floodgates would open once again, my eldest son, Jordan, brought Julianna out from Sunday School. Worship was still going on, and Julianna saw me and ran over to me. I scooped her up and she hugged me like she hadn't seen me for month. She kissed my cheek over and over and said "I love you mommy". It's amazing how my little girl's hugs can heal so much pain. In that moment, I felt loved and comforted. God knew I need my "best birthday present ever".

Second guessing

2011-04-22T18:22:00.000-07:00

I got a call from the nurse today. My first injection of copaxone is set for 5pm on Tuesday. WHAT HAVE I DONE! I told her she could always come next year instead. I HATE needles.. this is going to be so difficult for me, and doing it the rest of my life? Shoot me now.

I'm not really sure I have a choice. I prayed that if God wanted me to go through with doing Copaxone, I would have the financial assistance approved that I had applied for. I guess my heart sank when I was approved. Good that financially we are covered for the $1500 monthly expense, but 'bad' when it comes to having to inject yourself daily. It means so much more is added to your daily life. You go on a holiday, you must pack all the needles (and keep them refrigerated). Going away for the day? Make sure you bring your injection with you.. It's almost as though I'm going to be reminded even more of the disease that has claimed so much. I pray that God can carry me once again, into something I think that I cannot do.

To add more fun and challenge to the mix, I've discovered recently that I'm highly intolerant to gluten. Oh joy. Apparently my youngest son is as well. This creates MUCH challenge for meals and snacks. With my already low appetite, I just prefer to not eat anything. I know that's not an option, so I make myself eat, but I'd really prefer to take a pill to replace my mealtimes! (or just eat ice cream all day .. oh wait, that's only in my dreams).

The last two nights I've taken the 1.5 mg of LDN. Seems to be going okay. I do have wild and crazy dreams at night, but my sleep is much deeper and while I crashed last night and was nauseous for about 8 hours, today I'm a little better -- exhausted still, but no nausea and I haven't laid on the couch yet (as of 6pm).

I've had some pressure in my neck for the past month off and on. Am hoping that it's not an indication of vein blockages. Sigh.

Merv & LDN

2011-04-20T20:01:00.000-07:00

My brother is safely out of surgery ... answer to prayer! I am so excited about his hopeful outcome. (http://mervbest.blogspot.com)

On another note, I'm going to start trying LDN tonight.. hopefully I don't get any adverse reactions. Mind you, I'm a little more pensive about my upcoming copaxone injections. I have them in my fridge, I have all the "gear" .. just waiting for a nurse to come and show me how to use them. Still thinking this is part of the nightmare. As I get nauseous around needles, I am thinking this is going to prove to be very interesting indeed.

CONGRATULATIONS MERV on your first step to feeling normal !!!

David's .. uh, I mean, Dawna's Psalm

2011-04-18T05:00:00.001-07:00

It's very easy to relate to David in the Psalms. I'm sure there are times when we all can relate .. when we desperately cry out to God:

Psalm of David (Chapter 22):

¹ My God, my God, why have you forsaken me?
   Why are you so far from saving me,
   so far from my cries of anguish?
² My God, I cry out by day, but you do not answer,
   by night, but I find no rest.^[b] ³ Yet you are enthroned as the Holy One;
   you are the one Israel praises.^[c]⁴ In you our ancestors put their trust;
   they trusted and you delivered them.
⁵ To you they cried out and were saved;
   in you they trusted and were not put to shame.

Psalm of Dawna:

to the tune of "My Only Hope" by Seventh Day Slumber

The silence of what’s left is waking me, I never sleep
And what was here before is fading fast
And now it’s gone away, away

So I can pray this all will end
Take it a million miles away
I can’t go through this again
You’re my only hope

The deepest parts of me are crying out for something more
Blind reality has led me here
Have I thrown it all away, away

Dizzy

2011-04-17T17:01:00.000-07:00

In one quick thought, I find my mind whirling around the circumstances of my life. In one second I see what life was like, my diagnosis, my loss of baby, watching people live life while I watch from a distance, wondering if this is all a nightmare.. it MUST be?! ... all within a second. Makes one feel dizzy.

I don't ever seem to lose the heaviness in my heart with all these things. I keep praying to God to carry me, to lift me ... but each day I continue to physically decline and a little more of my heart and joy in life disappears. I struggle to maintain positiveness in my life .. to give that to my children. I don't want them to see me sad. My heart is also heavy for my brother, with Parkinson's, who has a HUGE hope for him in an upcoming surgery this next week. I SO pray that this is a turnaround in his health. I also worry that if anything happens to him.. I don't think I could deal with that. He is such a huge support for me. He feels so much of the same symptoms I do .. it's like we're twins (except he is the wise and brave one). Without him ...

God I don't want to even think the thought that this might be my existence until the end. Do I dare continue to pray for healing? Will you hear me? I know you hear me. But do I dare believe that you might grant my request? I'm scared to hope for fear that nothing will happen and I'll become bitter.

I feel lost ...

"Breathe Into Me"
by RED

And this is how it feels when I ignore the words you spoke to me
And this is where I lose myself when I keep running away from you
And this is who I am when, when I don't know myself anymore
And this is what I choose when it's all left up to me

Breathe your life into me
I can feel you
I'm falling, falling faster
Breathe your life into me
I still need you
I'm falling, falling
Breathe into me
Breathe into me

And this is how it looks when I am standing on the edge
And this is how I break apart when I finally hit the ground
And this is how it hurts when I pretend I don't feel any pain
And this is how I disappear when I throw myself away

Breathe your life into me
I can feel you
I'm falling, falling faster
Breathe your life into me
I still need you
I'm falling, falling
Breathe into me
Breathe into me
Breathe into me
Breathe into me

Breathe your life into me
I can feel you
I'm falling, falling faster
Breathe your life into me
I still need you
I'm falling, falling
Breathe into me

Breathe your life into me!
I'm falling, falling faster
Breathe your life into me!
falling, falling, falling
Breathe into me
Breathe into me
Breathe into me
Breathe into me

SURPRISE!

2011-04-14T08:52:00.000-07:00

Cherry Blossoms AND snow ? !

I woke shortly before 7am this morning, and turned my head towards the window. Confusion set in when I saw something white and fluffy falling from the sky. Surely I must still be dreaming. It only snowed once all winter here, how could it be snowing in mid-April? But, I WAS awake.. and it was dumping! Quickly I got everyone up (yes, even my 18 year old) to go outside to "play". I realized that I would expend all my energy in the hour that I may be outside, but it was worth it. This was MY time.

We started to shovel the driveway (because to me, that's very entertaining for me!) but quickly realized that this unforecast snow would most likely turn to rain so we had to focus our efforts on snowman building. Julianna wanted to make her own, so we helped her make her little version of the snowman.

I think I need to move to a place that snows all winter long. How life-giving for me today! I apologize to all those people who like Spring and Summer (yuk) .. but today was for ME!

Truly an amazing morning.. and Kirk (who has snuck out before 7am to meet a friend for coffee) brought me a coffee back once we had all retreated back indoors to dry off (yes, it's melting already). Now if only I could just stay home and relax the rest of the day, unfortunately, it's filled with doc appointments 60 minutes away, with a lot of rushing around.. that's okay. This day has had a glorious start!

...

.... our snow at 11am .. sure doesn't last long! :)

One .. breath .. at .. a .. time ..

2011-04-10T20:32:00.000-07:00

Am thankful that the steroid puffer we have been using has helped Julianna's breathing issues, and last night she actually slept through without any incident. YEAH! Feels good to get a decent sleep.

But wow.. just didn't think I could get worse so quickly, even with a decent sleep. In the last few days, my hands and feet have become so super-sensitive that just putting any pressure on them is soooo uncomfortable. Not really a convenient thing as I don't really know of any times that you have your feet suspended off the ground, not touching anything. Same with hands. You are ALWAYS touching and grabbing things, putting pressure on your hands. Cutting meat, opening jars, pressing the buttons on the stove and many other things prove to bring more discomfort. I often find myself unknowingly holding my hands up in front of me, my palms up .. almost as if I am holding breakable air, careful not to disturb its existence. I then realize what I'm doing and know it must because they hurt and subconsciously I'm trying to cradle them towards me .. much like a whimpering dog licking its wounds. Interesting, the psychology of it all. Yep, still broken.

I managed to get to church today, knowing friends would be there. I so miss interaction with the normal world. We invited a bunch of people over for lunch after which was very life-giving to me. So why did I also make chocolate chip oatmeal cookies for my kids after dinner? Ya, I don't know. I haven't learned yet how to be a successful (or willing) couch potato. However, as the day wore on, I ended up getting very weak. At this point, I feel like an 80 year old, barely making it up the stairs. Taking my much needed breaths requires a lot of energy. There is nothing I could do tonight other than sit or lay down. I'm exhausted.

Praying there is some resolution to this cage I live in .. thanks for all the encouragement from so many lately. While I feel totally broken and crushed, I do not feel alone.

The Fight Inside

2011-04-08T19:04:00.000-07:00

I am wondering when this fight will end. The fight for normalcy, the longing for the things that bring you life. The world is so grey, so full of heartbreak. Is this what God calls us to? Does He allow us to get completely broken so we are perfected for heaven?

Five days ago, a storm hit my body, one which was difficult to recover from. I was already struggling with enormous fatigue, but on Sunday night, I could feel the decline setting in and by Monday morning, I could not get out of bed. I spent the next 3 days staring at the ceiling, wondering what I did to my body to make it hate me so much. Makes one wish that we had cable TV (as it gets boring counting the dots on the ceiling).

Today, I made myself get dressed and push through my day. I was walking down the grocery isle today, when all off a sudden I had an urge to just flop down on the floor and give up -- just start wailing, crying and say "ENOUGH .. I CAN'T TAKE ANYMORE". I'm sure the grocery clerks would thank me if they had known what was rolling around in my head and that I didn't follow through with it. I continued to drag one foot in front of the other and instead choked down my tears. How long Lord? Is this what the rest of my life will be -- a continued degredation of my health?

I can honestly say that I hate summer. Rainy, wet weather is what I feel at home in. You see, with summer, comes increased activity -- and it's this activity that I'm somehow cursed to avoid. I am forced to watch from the sidelines, when what I so desperately want is to be a participant. My boys remembered a long time ago when some friends of ours and our family played (light) hockey on our driveway. It was a fun and rousing game! They proceeded to tell me today how sad they were that I can't play with them anymore. They wish that God would heal me so I could play hockey, and tennis, and swim (and the list goes on) with them. Oh how my heart breaks and breaks.   My dream growing up was to be a mom -- and one fully involved in their lives. It is so crushing for me to say "I can't" over and over again when they ask if I can play, or go for a walk, or chase them around the house.   If I'm to view God as my heavenly Father .. that's a hard one to swallow, for I would NEVER wish such sorrow on any of my children .. even if I knew that down the road they would/could become a better person for their suffering. I just don't see the value. On the other hand, I don't see a value in pampering oneself, but shouldn't it be okay to want some type of relief or normalcy in one's life? I pray and pray for healing, even a little bit would be welcomed -- but I hear nothing. Do I give up? In reading other people's stories of lifelong suffering, it doesn't make me all to hopeful that there is healing out there for me.

I really don't think I was made for this type of suffering. My brother (with parkinson's) seems to have "made it" to the point where he sees suffering as a blessing. I have read books from Joni Eareckson Tada and lately a person who has fought multiple cancers in her lifetime and still don't know how to get to a place where "suffering is good".   I struggle so greatly with God's love for me.   I feel abandoned. I wonder why he let me have these desires in my heart to love and play with my children, a love for being active and a multitude of other desires of my heart that are broken.   That's it -- I am just broken. I cannot seem to get to a place of healing, to become "unbroken".   I feel no joy. I feel no peace. I go through the motions day after day, praying for some resolution of my struggle with this disease, for some hope, but things just continue to decline. Will God be forever silent to me? Must this be a journey of constant trust that He is God and I must just struggle through my existence to the end?   That is what I do not think I can do, at least with grace.   I am broken.

I constantly try to focus on the blessings of my life, and push away the hurts of "I wish you could play with me", yet everywhere I go, I see people doing normal things that I know they take for granted.    I find that I do not have the strength to fight the brokenness .. I am so tired of laying in bed, so tired of having to let my family do most of the work.   I am not wanting to be a burden.

I'm in the process of researching the cost of copaxone - not really relishing having to give myself needles daily the rest of my life, but I don't know what else to do if God doesn't show up. Also, I'm going to see if my doc will prescribe LDN ... and see if that helps with my fatigue.

Once again, forgive me for my style of music -- it expresses the turmoil within. (I'm sorry, but country music just wouldn't fit hehe .. Feel free to just read the lyrics without the music, but for me, it just isn't the same).   This song, for me, talks of the battle that I feel with giving up vs. pressing on, with mourning all my losses and fighting against the constant thoughts of "I just can't do this anymore". I am so thankful for my wonderful children.. without them, this road would be much more difficult. (PS .. my hubby thinks this writing sounds suicidal. I assure you, I am not. I just feel I am in a place devoid of hope.)

RED - "Fight Inside"

Enemy, familiar friend,
My beginning and my end,
Knowing truth, whispering lies,
And it hurts again.
What I fear and what I try,
Words I say and what I heard,
All the pain, I want it to end,
But I want it again.

And it finds me,
The fight inside is coarsing through my veins,
And it's raging,
The fight inside is breaking me again.

It's still the same, pursuing pain,
Isn't worth the lie I've gained.
We both know how this will end,
But I do it again.

And it finds me,
The fight inside is coarsing through my veins.
And it's raging,
The fight inside is hurting me again.
And it finds me,
The war within me pulls me under.
And without You,
The fight inside is breaking me again.

It's nothing.
It's everything.

It's breaking me.
I'm falling apart.

Withdrawal?

2011-03-28T14:21:00.000-07:00

Okay, so I've decided to stop the amantadine. I haven't notice much of an improvement in energy levels. While I only took one (instead of the maximum 2) per day, I wasn't willing to take more due to the possible side-effects. I already was experiencing lack of sleep at night and didn't want to increase that at all.

It's been two days since I've been off of the meds. Yesterday I was doing okay and even made it church for the first time in months, but noticed a slight increase in numbness/sensation in my fingers and feet. Today, it's greatly increased to the point that it feels like someone is taking a hammer to my fingers. Yes, quite painful. Hurts to type, hurts to hold a knife to cut up food, pretty much anything. The electrical sensations are having a 'heyday'. Also, nausea has kicked in full-time. Fun. Time to do some research. Here is what I came up with when stopping amantadine:

Neuroleptic malignant syndrome, involuntary muscle contractions, coma, stupor, hypokinesia, hypertonia, gait abnormalities, paresthesia, EEG changes, and tremor have been reported during postmarketing experience. Agitation, hallucinations, stupor, and slurred speech have also occurred after abrupt discontinuation.

Thankfully, I haven't noticed any of the post side effects other than the increased paresethesia (sensation of tingling, pricking, or numbness), but at least I can safely "guess" that is why it's kicked up a notch all of a sudden. I am hoping that in a few days that pain will decrease. Now, if hallucinations start making me believe that I'm in Hawaii on the beach, I think I'll just run with that one.

Such a struggle to find joy amidst pain, to find the willingness to tell your body to get up and move. I so long for healing .. for the possibility to enjoy my family, to participate with them. Take them for walks in a forest, go bike riding with them, chase them around the house. God, hold me while I cannot do all that is so dear to my heart. Help me to find ways to be a part of these great "little kid" years. I don't want to miss it all because of a disease.

Forever sleepy

2011-03-22T15:08:00.000-07:00

Ok, I'm beginning to wonder if perhaps someone is slipping sleeping pills into my water. For the past few weeks it seems I have been consistently getting more and more sleepy. There are times, however, in my day where I do feel like I have a little energy to do things, but it is short-lived. I feel constantly exhausted. My body doesn't want to do anything. The simple act of taking the kids to the park almost feels like running a marathon. One step at a time. Take is slow. Don't think about tomorrow (too depressing). Focus on now. Count your blessings.   Try not to think about your losses and at all costs don't "wish" you could do what others are doing .. that is a guaranteed recipe for failure (feeling sorry for what I can no longer do).

Life feels very long. When you take so many things that you enjoy out of the picture, it creates a searching for something else to replace your hobby or the thing that gives you life. I am a very physical person. That being taken away, I am stuck in a place trying to find out what gives me joy, fills up my 'gas tank', etc. I find myself stuck, always reverting to thoughts such as "I like tennis, ballet, jogging, shoveling snow (my favorite!), hiking .. ". Hmm.. how to find things that are not physical. Any suggestions? Knitting? uh no. Chess? (with MS brain fog? big resounding NO).   I will have to continue searching.

I also would like to find my place in how I can serve others. I feel so stuck in a place of weakness, that I'm unable to do things such as cook meals for others (something I used to do) or find other ways to bless others. Frankly, I feel like a big sponge in society. While I am grateful for all that I receive, I do want to give back too.

Just a few meandering thoughts. My pain is very minimal right now, which I'm thankful for. The amantadine (for energy) doesn't seem to be working, so I may have to double dose it as suggested. Really not wanting to do that.   I did just down a Starbucks Doubleshot Espresso & Cream coffee drink I purchased yesterday. Thought it might give me a KICK to jumpstart my housecleaning (as we have guests coming over tonight).   While in a perfect world I could take up drinking that as my new "hobby", I'm sure my body wouldn't appreciate ingesting that on a regular basis. Mmmm

Okay, off to do some dishes by hand (our dishwasher is broken ARGH)

New drug

2011-03-13T10:24:00.000-07:00

On day 4 of Amantadine. It's supposed to help with energy levels. I think it *might* be working as I have been able to stay out of bed the last few days, albeit with some effort. I really hate taking drugs, but if my life will consist of staying in bed all the time, I don't see what other option I have.

Still dealing with emotional issues which make my perspective on life a bit more dark. Finding myself at times suppressing my emotional side so that I don't have to deal with it. I'm really at a loss as to how to look at heart issues without cracking under the pain of it. I haven't been able to figure it out over the past year, so I'm not too optimistic that I'll figure it out any time soon. I hope that I can .. because it makes life feel very long.

Pain levels are pretty low right now, just the internal toxic feeling which hasn't really gone away over the past few weeks. Numbness is still all there and going strong. Fatigue is still strong and it's a constant battle with fighting depression about where my body and life is going.

Finally got my parking permit this week, so at least I can park close to a store's door on days when I feel all I can do is crawl from one place to the next.

Amantadine / Symmetrel

2011-03-10T14:26:00.000-08:00

Started a new (oral) medication which is supposed to help with energy levels. Will see how that goes.

My Spirit is Broken

2011-03-05T19:42:00.000-08:00

I remember a day when I had joy. I remember a time when I had hope. Lately, I feel lost. I understand the concept that I'm the clay being formed by the potter. However, the process is long and very difficult. What about the verse that says the joy of the Lord is your strength? I must be missing something. Where is the joy .. and the strength? I keep plugging along. It's not like I have a choice. If I did, I would choose health. I am not adept at fighting. I am weak and frail. The fatigue - insurmountable. I know the Holy Spirit intercedes for you.. but does He fight for you? I hope so.

I ran across this poem today. Feels like it was written just for me.

God in Heaven
How my heart aches
I get smashed to pieces
Until my spirit breaks

Feeling like this
Is unbearable to me
I can’t handle pain like this
Not to this degree

I know You’re trying
To make me a better person
I look for the light
But things only worsen

I don’t understand
Why You gave me life
When I would live
With so much strife

Oh God in Heaven
I can’t take it any longer
Even though I know
This will make me stronger

When I’m feeling like this
It’s too hard to see
That You’re trying to make
A better me

Snow! (even if it is only for one day)

2011-02-27T13:20:00.000-08:00

Do you ever have a day where you are weak and tired .. your defenses are down, and you give in to temptation WAY too easily? It might be that brownie covered in ice cream and hot fudge, or perhaps something else that gives comfort. For me, it's something complete different (although now that I mention the brownie, I'm definitely craving one!).

Last night our local weather "experts" had forecast a bit of snow. I've learned to NEVER get to excited about that announcement. They are usually wrong. Surprisingly, we awoke to a few cm's of snow and the rain that was supposed to settle in by 7am didn't materialize.   As soon as I wake up on any given day, my body announces to me how much it likes me at that moment. Today, it wasn't very favorable and I quickly deduced that my body was about a 0.5 out of 10. I would have labeled it as zero, but since I was actually able to move without complete exhaustion, I had to at least be optimistic for my day.

It is my husband's birthday today. At least I can make him coffee this morning! So, that is what I did. I made myself get out of bed and find my way down to the kitchen at 7am. However, because of the rarity of snow, my kids wanted to go out and play. This is no easy feat! Getting kids dressed for outside winter play becomes an assembly line .. a very slow one at that! Unfortunately, hubby didn't get his coffee in bed as I took too long to make it. At that point, I was pretty ticked off at my body's hatred for me and it was my time to give in to my version of the 'hot fudge ice cream brownie' -- "shoveling snow".   For those of you who don't know me well .. shoveling snow is one of my favorite things in life to do. It is freeing, peaceful and makes me feel alive! Even though I felt so crappy this morning and could barely walk around, I was mad.   Mad that I'm stuck in this body .. mad that everyone else seems to be able to experience life and I'm stuck having to do nothing other than exist. So, enough was enough! Who cares what the consequences would be. I was going to shovel that driveway!

Well, the kids decided to follow me out there and help, so there were 5 of us shoveling (and bumping into each other). After we quickly finished our driveway, my 8 year old said that we should help some elderly neighbors by shoveling their driveway. Sounds good to me! Off we went and cleaned theirs. This was fun! Once back home the kids continued to play in the backyard while I decided to "clean up" a bit of our driveway shoveling job. I thought I would clear a bit in front of our driveway on the road, just to make it a bit more complete. Before I realized it.. I had done a major strip of the roadway.   My neighbors must think I have some serious issues. ha ha

I must say, my right leg is not in favor of what I did today. I feel like I'm lifting a 100 lb. weight when I walk. I knew I would pay for what I've done. Do I really care? No. Not at all. I'm so tired of being the invalid, the needy one, the weakling. I needed to feel human - normal - useful - valid. I thoroughly enjoyed myself. I wish that feeling could last forever. Unfortunately in this climate, it may only be possible once a year. Today was my day.

Not alone

2011-02-25T19:19:00.000-08:00

Physically difficult day. Probably a 1/10. Had some visitors today, which kept me focused on other things. Today, I find it hard to be strong.

Here is a song which reflects my heart at this moment:

Red - Not Alone

Slowly fading away
You're lost and so afraid
Where is the hope In a world so cold?
Looking for a distant light
Someone who can save a life
Living in fear that no one will hear your cries

(Come and save me now)
I am with you
I will carry you through it all
I won't leave you
I will catch you
When you feel like letting go
'Cause you're not
You're not alone

Your heart is full of broken dreams
Just a fading memory
And everything's gone
But the pain carries on
Lost in the rain again
When will it ever end?
It's Hard to believe
It seems so out of reach

But I
(I am here)
I am with you
I will carry you through it all
I won't leave you
I will catch you

When you feel like letting go
'Cause you're not
You're not alone

And I will be your hope
When you feel like it's over
And i will pick you up
When your whole world shatters
When you're finally in my arms
Look up and see love as a face

I am with you
I will carry you through it all
I won't leave you
I will catch you
When you feel like letting go
'Cause you're not
You're not alone

And I will be your hope
You're not alone
And I will pick you up
And i will be your hope

Slowly fading away
Lost and so afraid
Where is the hope in a world so cold?

Self-Control

2011-02-22T08:53:00.000-08:00

Okay, I must admit I'm terrible at self-control. In any given "battle" I'm more apt to give in to my wants than to stick out for what I know is right. But really? I can't even stay off coffee for a week? I had thought it might be a good idea to try to cut out coffee for a bit to see if I feel any better.   I continue to fail. It's not as though I am "addicted" to the caffeine, because I drink decaf. It's the ritual of it.   There is something comforting in the morning cup of coffee -- the start to the day. That smell that says "okay, it's time to slowly open your eyes, one at a time". Yes, the kids do help with that by jumping on you on the bed, but the coffee is a little more gentle at prompting you to start your day.

This also has me thinking. It appears that's it's not so much the actual coffee itself that draws me, but rather the sense of comfort that it provides.    Perhaps comfort has become an idol in my life? I hadn't thought of that before.   In my quest for better health, so much has been removed from my daily routine -- foods I love, exercise, etc. It leaves one with a sense of loss when you consider all that you "cannot" have. In one way, the morning coffee replaces a little bit of that loss with an "ahhhhh, finally something just for me".

I guess it's time to figure out whether this is something that is an issue for me and my battle with self-control, or whether I will allow myself the pleasure.   Maybe I can find a median wherein I can partake of both worlds -- one where I can enjoy some little pleasures yet at the same time continue to strive to die to self.

Day 4 - Prednisone (Last Day!)

2011-02-20T22:55:00.000-08:00

Well, I've now realized that this round of prednisone compared to last year's has one major difference. Last year it helped a little with energy, but this time, I feel like my body is raging with adrenaline. It just won't shut off. Unfortunately, seeing as I had another dose today, I cannot foresee sleeping yet again tonight. From all the experience with little kids that keep getting up at night, I am surprised that this side effect hasn't gotten me more "down". I wake up the next day being tired, yet also feeling like I've slept the night before -- even though I haven't. Normally, when I don't sleep for days, I would have a very difficult time coping. This time, not so much. I guess that is because I'm reveling in the experience of not getting tired all day. My body just keeps going. This is what it feels like to be human (for lack of a better word). So for now, the displeasure of not being able to sleep much is far surpassed with the current joy of getting my body to move without ceasing. This all being said before I head off to try another night of sleep, so I *might* change my mind tomorrow if I don't succeed. I can't imagine how long my body will hold out without sleeping. At least I'm done with the therapy so it should eventually start slowing down in my system.

I had a good hour to dive more into the book that is challenging all that is within this confused brain. I'll end today's post with a few paragraphs:

I've noticed before that people often don't feel like they have any choices when they're going through difficult circumstances. They feel as if all of their options have been taken away. And that's true to a certain extent -- but only to a certain extent.

You may not have had a choice on whether you could have kids or whether your loved one passed away or whether you got fired or your husband had an affair.

But you do get to choose how you respond. And in that choice lies an amazing amount of hope. That choice is what makes the journey of transformation possible.

While life is uncertain, God is not.
While our power is limited, God's is limitless.
While our hope may be fragile, God is hope himself.

* Overnight Update: Slept okay actually. Only was woken up by Jordan getting up at 5:45am to go to his exercise class (Mom.. where are my gloves?!). However, upon waking I realized my lovely migraine was back from last week. Am thankful for the sleep, and praying for the release of the explosion occurring in my head. Have a great day everyone! :)

Day 3 - Prednisone

2011-02-19T23:56:00.000-08:00

Wow.. what a LONG night! Julianna took the stage tonight, waking up almost every half hour. I have NO idea what kept her sleeping so lightly, but perhaps the strong winds were keeping her awake. Finally by 2am I said to her, "Julianna, if you keep waking me up, I'm going to get more sick". She followed with, "Oh, I'm sorry, I won't call you anymore". And that was that. She was happy, and slept the rest of the night. Me? Not so much. The winds were VERY strong, and something outside my window kept banging on the house. It sounded like some piece of metal, like a lid to a metal box slamming shut. I figured it must be on the roof and as it kept banging every other minute, I finally decided by 5am to listen intently as to where this sound was coming from. I wasn't sleeping anyway (because of this loud, intermittent noise). I still couldn't quite get a fix as to where it was coming from, so I decided to open my bedroom window, take off the screen and stick my head out the window (probably 6am by this time). Low and behold, right outside my window was a loose bracket for a drainpipe, only nailed in on one end so the other was not fixed to the wall. If a gust of wind came that was strong enough, it would lift off the bracket and bang it against the house. If ONLY I had figured that out 6 hours earlier I would have had some sleep!

It's amazing the "fake" energy that prednisone can give a person, for even after 2 nights of no sleep, I managed fairly well the entire day without getting too tired.

The day started with getting the boys ready for German School, after which Julianna, Kirk, Jordan & I went to A&W for a breakfast treat from Jordan. (thanks Jordan!)   Believe it or not, the line-up was almost out the door at this place!   We all had a nice plate of easy-over eggs, two pieces of bacon and whole wheat toast (Julianna managed to scarf much of everyone's toast .. somehow without us noticing). It was a relaxing breaky followed by a trip to the GAP to try to find Jordan a jacket.   We spent too much time looking at everything because of the 40% off sale and realized that it was nearing 11am (my next IV appointment time). This left us without enough time to get home, so they just dropped me off at the hospital on their way home. Without going home, I wasn't able to bring my normal bottle of water. What to do, what to do. Hmm.. one does pass by the Starbucks in the lobby on the way to the third floor general daycare. Yes, I heard the coffee frappaccino call my name. Unfortunately, I forgot to ask for it in decaf!!

My IV site wasn't liking me much today, so at the end of the treatment I asked her to take it out, and I'll have another one lovingly inserted just for tomorrow. A bit of a bonus though as I can shower tomorrow morning without having to cover my arm in plastic bags to keep the IV dry.   My symptoms today have been again, the metal taste, followed by an interesting session of skipping some heart beats. That's always an interesting adventure .. mind you, that could have been caused by the caffeine too ;)

Being dropped off, I got to walk home, yes, uphill. I think the build up of prednisone has gotten to me. I walked home (at a fairly decent speed woo hoo!), followed by weeding and other gardening in the backyard, errands to several different stores, renewing the insurance on our utility trailer and a bunch of other "in home" things that needed to be taken care of and organized.   Where did this energizer bunny come from. Wouldn't that be nice if it lasted. I know it's a "false" energy level, because one does not feel this after not sleeping for two nights. I have to make sure I'm careful to not get run down and sick.   So, I'll write this and get to bed hopefully before midnight, and maybe SLEEP!!

During my time today in the IV chair, I ran across something in that book I'm reading, and I thought I would share its insights with you. It states that hope is built into our being, yet asks the reader why we do not feel hopeful .. why do we rather feel despair.

I think your hope is still there, but you've fallen for the fallacy of false hope ... you may have been hoping for something instead of hoping for someone. Hoping for something will almost always disappoint. Hoping in God will always move toward something good, even if we can't see it. It's in that vein that the book of James urges us ...

My brothers and sisters when you have many kinds of troubles, you should be full of joy, because you know that these troubles test your faith, and this will give you patience. Let your patience show itself perfectly in what you do. Then you will be perfect and complete and will have everything you need. (James 1:2-4)
"You should be full of joy," James tell us. Be full of joy when you face difficult times. Be full of joy when a dream dissipates or a desire is crushed. And why? Because you're about to be freed from a false hope and redirected toward a true hope.

That's what our difficulties can do for us if we let them. That's what our painful times of waiting for God to act can do. They can deliver us from our delusions, our misguided expectations, our egotistical dreams, and deliver us into the actual presence of the God who is our only true hope. They can teach us the patience and trust to let God change us the way he needs to change us. Rest in Him while you are waiting, and let Him be your hope.

I read that today, and it triggered with me as truth, but yet almost from a different world. In a sense, it is from a different world, at least when it comes to how my mind operates. It seems such a foreign concept, to take my fears, hopes and dreams and separate them from the core of who I am, hand them over to God and let Him guide them. I was always under the impression that hopes and dreams were sometimes things that He had given us, that they were a gift to us -- helping define who we were. What if deep-felt dreams and heart desires, while still good, weren't something we were to seek after? What if I'm putting too much focus on that, instead of seeking what He wants from me? Lots to digest. At the same time, though, in seeking Him, how am I going to definitively know what He wants for me? (Another of my life-long questions).

Too much to fully ponder tonight, that's if I want to get to bed before midnight! So I'll leave you with that, letting you know the new questions I'm letting stir within me. I hope to make sense of them, and perhaps come out in a positive direction to where He really wants me to be.

Day 2 - Prednisone

2011-02-18T20:21:00.000-08:00

Well, Ryan wasn't feeling well last night (but seems better today) so I wasn't able to get to sleep until 4am .. and yes, up again at 7am. I'm realllllly tired today. Thankfully I didn't have too much on my plate so I was able to stay at home for the morning until I had my next IV at 12:30pm.

The side effects have been a little different today. Yes, the same "metal taste" in my mouth, yet a bit stronger today, but also other things as well. My IV site is SUPER itchy. I'll probably have them remove it tomorrow and do another site instead. I didn't get through the entire 4 days last time either on one IV.

My feet have been burning a lot more today. This is all just a wait and see game. It's hard. My voice has been extremely crackly as well. It's really frustrating, especially if I realize that MS is a downward slide .. and things will get worse. I don't want to lose my ability to speak.

Jordan wants to take me out to breakfast tomorrow.. just a mom & son date, so that is a nice surprise. Admist all the pain and fears in my life, it is mixed with some nice blessings. Hoping that my next year provides more blessings and less of the MS ...

I'm having a bit of a heavy time emotionally today. It seems like I'm always in a great battle emotionally against all my losses -- both ones from past and ones that haven't yet happened. The baby one is one of the hardest I think. Babies and pregnant women are everywhere - a constant reminder. I realize that my little one would be almost 4 months old now. It's rough. I do my best to focus on all the blessings (4 wonderful kids), yet the loss of my last weighs very heavy on my heart. Daily I ask the Lord to life that sorrow. It has not yet happened. It feels as strong as that day when they said to me "there is no heartbeat". I wish I knew when it would subside.

Anyway, thanks again for your continued prayers. You are all a blessing to me and my family!

Day 1 - Prednisone

2011-02-17T23:59:00.000-08:00

It was a VERY busy day for me today. Going to the US for parcels, getting my kids to classes, picking up stuff at various locations and getting back in time to make lunch and get the kids fed, Julianna down for a nap and then off to the hospital for the IV.

At first, I thought I would walk, it was a beautiful day and it's only two blocks away. I got as far as the garage and then had the enlightening revelation that I haven't walked that far in months! Did I really want to walk there (downhill), have the treatment and then walk back UPHILL? Uh no.

So, I got in the van quickly and drove to the hospital. The problem with my change in decisions was that I had not brought any money with me. So, I went to park the car, but apparently someone had informed the population that it was Christmas shopping time at the hospital, therefore, there were no parking spaces available AND there were dozens of vehicles swarming the parking lot looking for any person walking to their car to release a parking spot. After a few minutes of circling, I finally found a spot. Good. I still had 5 minutes to spare. The only problem was that I now had to pay for parking, but with no money. Argh. I went inside and spoke with the parking attendant who told me that I could park there, and that the parking fee was only $17. (Does this person make $1000 a week or something?). So, my only other option was to go back home and get the money and jump back into the "fight for a parking spot" exercise. Oh, if only I had that handicapped parking sticker today! I quickly called the hospital dept and told them I'd be late for my appointment.

I quickly drove back home and got my credit card and was back in a few minutes. I finally found a spot at the very corner of the parking lot and ran into the hospital to pay for parking and get up to my appointment (ya, probably not the smartest thing to do). The lady at the desk was very surprised that I was there so quickly (as I was only 5 minutes late). She actually said "wow, you made it on time". "On time?" I was thinking. Makes one wonder if the rest of the population always shows up late so 5 minutes late is actually considered on time.

My nurse was NOT adept at doing IVs and it was quite painful. She kept "fishing" up the vein for probably 30 seconds, made a mess with blood everywhere. Good thing my stomach was empty. I sat there for the next hour, reading a book, listening to a man snoring next to me and texting a friend. (I've had to up my text message plan for this one person .. but it's worth it). Hey, Kirk has an iPhone, I have to have some fun too!

The rest of the day went well. Just feeling a little off here and there, but nothing too difficult. I did get to spend the evening getting my hair done, so that was a nice relaxing part of my day. My body felt exhausted, but with the prednisone it made a strange "wired" feeling. So, while my body was energized inside, my eyelids felt like they needed toothpicks to stay open. Once home, I had many tasks to do (prepare breakfast for the crockpot for the next morning, and making almond milk to go with it), so I ended up not getting to bed until fairly late. That's just the way it is with kids and family, always something to do to keep things in order and running .. and I wouldn't trade it for anything!

IVs and Donuts

2011-02-16T21:54:00.000-08:00

I blinked and somehow an entire day went by, once again. Was it that quick for you?

Today was a busy day dealing with school stuff for the kids, followed by a trip into Burnaby for my MS appointment with my neurologist. I chose to take Julianna with me so she could provide me an easy escape through backed up traffic -- YEAH! I could use the carpool lanes!

My neuro is somewhat on board with me not going the interferon route. He knows I don't really like drugs too much and really there are may reasons why I have chosen not to try the many different injections out there for MS. Today, he agreed with most of my issues with those treatments.

One is finances. Frankly, it's just something we cannot afford.   However, one interferon has recently been fully covered, so it would be no cost to me. Now just figuring out if I'd ever want to go through all those side-effects!   At this point, NO.   He did, however, prescribe a four day IV prednisone treatment at my local hospital (which is only a block away).   I hopefully will start that within the next few days.   About a week after that has finished, if my fatigue is still mind-numbing, then he has given me a prescription for Amantadine. Should be interesting to see if that helps at all. Bottom line, he is going to set up another spinal MRI (to do some comparisons), we will do the IV and then go from there.

Oh, and I will be getting a handicapped sticker for my van. I can't even believe I'm saying that. Will I use it? That might be another story. I have always thought that if I do use it at Costco, and walk out with my kids, I'd most likely be shot or at least have tomatoes thrown at me (because I don't "look" sick or handicapped). I will probably only use it on those days where I feel like death is upon my door.   I am a very stubborn individual (no comments please ha ha) and maybe some pride mixed in there as well. I'll certainly use it on those days when necessary. I've had occasions when I've been completely taxed, yet had to do errands. I remember going to Walmart, and only finding a parking spot VERY far away from the main doors. I found myself almost in tears thinking, "I can't walk that far AND do the shopping too!".   It was then I realized that there are days when I even need the help of a sticker.

Oh, the donuts!   After the neuro appointment, we walked down into the lobby of the Burnaby hospital and there was Tim Hortons.   Wanting to make special little "dates" for my kids, I decided to buy Julianna a long john donut with sprinkles, also thinking it would keep her busy for at least half of the way home in traffic. Unfortunately, I don't think it lasted far beyond the parking lot.   But thankfully, she promptly fell asleep (very common for a little 3 year old who is kept up from her afternoon nap!).

Overall, a decent day and am happy I didn't crash with all that I had on my plate today. Thankfully, someone brought a meal which was a life saver! Hoping the hospital organizes the IV outpatient schedule tomorrow instead of later in the week.

Oh, and please remember to keep my brother (http://mervbest.blogspot.com) in your prayers.

Time Dilation

2011-02-15T23:23:00.000-08:00

According to Einstein's special Theory of Relativity, the duration of an event depends upon how fast you are moving. Time dilation can be described by postulating that two observers are in motion relative to each other, yet one observer views the timeline of an event as shorter than the other observer. The faster the relative velocity, the greater the magnitude of time dilation. Let's face it, after the age of 40, EVERYTHING goes faster! Yet somehow for me, I'm frozen in a static reference frame. Simply put:

I think I'm spending too much time with my self-proclaimed "physicist" son.

Today, someone asked if I was going to update my blog and let them know how I was doing. Hmmm, didn't I just do that?   While I thought it had only been a day or two, I was surprised to find that it has already been five days!   Five days? This could not be so. I only remember a few.   Maybe there is some truth to this time dilation.   Everyone else's world is going at the normal speed, yet mine appears to be moving MUCH slower. Granted, I seem to be in a robot mode of functioning only. I get up (because the kids wake me up), do breakfasts, lunches, dinners and somewhere in between break up disagreements, pay bills, run errands and throw in some education now and then. Beyond that, I'm not sure there really is a world of leisure out there. (Oh, and as a sub-note, thanks to all who bring meals, it's been a life-saver!).

That's not to say that I mind doing what I do .. I guess my point is I am wondering how five days progressed without me noticing. Guess it might be time to clean that film off the walls of this fish bowl!

Okay -- you've asked, so here is the update:

The last day I wrote was actually a good day compared to the day following. I pretty much melted down that following day and didn't think I could cope beyond that moment. Thankfully, a trusty telephone call to my brother helped me from crashing completely. He is always such an encouragement to me, and even though I don't always understand his advice (I am a slow learner), I do my best to take all his advice to heart. So thank you Merv, for once again picking me up and carrying me.

Physically, it's been a rough week of migraines and unexplainable body sensations. I often wake up at night feeling like my body is not my own. It's a feeling I cannot explain, so I won't even try. My numbness in my hands has increased. My fatigue has greatly increased.

I finally ventured out to contact my neurologist (whom I haven't seen since last July), and I have an appointment tomorrow to go over options. I'm hoping he'll subscribe a course of IV steroids, but I don't know for sure if he'll agree to that.

Bottom line -- I'm so tired of this crazy fatigue. Sometimes I feel I can't even get off the couch. It does feel like it's getting worse, and then at other times, it's better. Can it really go in both directions at the same time?   I have far too many questions. This whole process of dealing with MS has my head spinning, and at times it's almost comforting to pretend to allow myself to believe it's only a nightmare. Often I think if I just shake my head enough, I'll wake up and realize it's all been a dream.   I know that's not the case, but part of me sometimes comes to a point where it would be a much better option emotionally.   And again, we are back at the beginning. How do I deal with all of this? Where do I place myself in this world. What is my role? What is my significance? Questions which constantly swirl around in my head. Sometimes I find the answers for those questions, and I feel like I can almost close the door to asking them again. But later, the overwhelming nature of my present situation and unknown future seems to overload any security and it starts again.   I'm working on it. If I've confused you a bit by what I've written today, I apologize. I'm in that head-spinning point of view at the moment. If anything, if might give you some perspective into my confusing world.

Bottom line:   your continued prayer is so essential to our survival as a family. This process is stressful to every member of our family. So thank you for your prayer support, encouragement and friendship. The support from family and friends has been such a blessing. It's after midnight so I can't blame tonight's poor sleep "only" on my MS -- I'd better sign off.

Now if I can find an existence without time dilation, I should be able to update you on tomorrow's neuro appointment relatively soon.

My Rant

2011-02-10T12:34:00.000-08:00

Yes, apparently it is that time again when I overwhelmingly feel like my world is falling apart and thus lose all sense of hope. I know from experience, that this feeling may not last forever. I may find a day where I see a glimmer of hope. But for now, that door has been closed and I'm feeling pretty crappy.

Yesterday my voice issue got worse. If I spoke too loudly, my throat would vibrate and it was NOT a good feeling. I wonder if that's what dogs feel with dog barking collars. Almost like I would get zapped if my voice level was too high. Fun.

Later afternoon my neck started feeling tight again around the collarbone area. Not sure why. Thought I'd take an aspirin again in case I was having some type of blockage, but not entirely sure this was a wise decision. Over the course of the evening, my numbness started to greatly increase, ringing in my ears returned and my body switched over to some type of alien being, one that felt like it was on earth, but wasn't supposed to be.   Everything I touched caused discomfort. My entire body felt like it was hooked up to the electric current of our house wiring. If my hands or feet were to touch anything, it produced a feeling that could be likened to wrapping your fingers tight with a string to the point that you lost all feeling and the pain starts to increase. The only problem is if I move them to take the pressure off, it just creates the feeling of pressure somewhere else. I wonder if I could perfect some type of levitation device so I don't have to touch anything? Driving becomes quite an uncomfortable task, unless I find a way to not hold the steering wheel. Typing? Same thing.. pressure on the fingers. using a knife and fork to cut anything of substance is something I'd rather not repeat.

I lay in bed, wondering why God didn't just grant me a disease that was quick and had some finality to it. At least then there wouldn't be this long, drawn out suffering.   I have prayed and hoped for so long .. only to have things get worse, that I don't think I hope any more. I'm probably too scared to even hope for hope. I feel like I live in a glass fish bowl. I have little fishes to take care of, which sums up my existence. Yet I have this disease which keeps me from doing much swimming or anything else. I look through the glass at the world outside the tank, and feel such pain that I cannot contribute or participate in the life outside.    I am stuck. I have no choice. I feel like a prisoner. I guess the best way to describe it could be hell on earth. I feel like a shell of a person. What can I contribute? I do what I can but I'm so tired of feeling like I'm just a burden to all my caregivers. Why did God create life? Why are we here? Are we here to take, take and take some more?   The anatomy of a disease should be that it kills quickly, at least then it would have some mercy.   Or maybe that's the point .. to be long and tortuous. Maybe I should just be mad at Adam and Eve.

Are we built to take pain day after day? How long before your spirits are completely crushed and cannot continue? This is a life of existence. There is no flourishing. There is minimal joy. Maybe a few joyful moments when kids do something quirky or silly. But I cannot look at tomorrow.. at all.   I fear what tomorrow brings, mainly because I have nothing left in me to fight anymore. I have no choice. I must continue minute by minute. I wish I had been given a choice sometimes. This feels like a nightmare in which I am not waking up. I hate looking at photos of a few years ago, before diagnosis, before any symptoms started to pop up. Those were days of true joy, I would give anything to go back to 2006. But I cannot.

So I apologize for my pity party, amidst the update of my symptoms. I'm sure I'll find a way to cope again soon. But I'm beginning to realize these feelings of loss and being beaten down have always been there, and probably will always be, even if I find new ways to suppress them, or deal with them. I am not a strong person. I never have been. I so long to just be told everything will be okay, soon. But I can't let myself go there. I will fall apart. I need to focus on what the next meal will be, resolve the next fight over lego, and figure out how I'm going to get the chores done that loom over me. Anything beyond that currently does not exist in my fishbowl. I'm just so tired of holding it all together. I so much want to just let myself fall apart and give up. I do not want to fight. But I know what that brings:   more pain, despair and the inability to cope.   So, against my will, I have no choice -- I must put one foot in front of the other and continue to exist.   Time will not stop for me. It moves on without me. So I can only choose to stop and give up, or to keep going with this body that I did not sign up for. Without my precious children, I would not get out of bed. For my kids, I will keep going.

Coffee is not a drug -- it's a vitamin!

2011-02-05T21:17:00.000-08:00

Patience has NOT been a virtue of mine. (Yet another thing for me to work on!). It's been a pretty challenging week in relation to fatigue. My hubby went on a trip to South Carolina four days ago, leaving me to single parent. While this really isn't that difficult on a normal day, when I'm fatigued it really is a challenge. Throughout the past few days every couch or chair I have walked by, has beckoned me to collapse into a state of unconsciousness. Alas, that is impossible with little children in the house!

Fighting despair, depression, or any other feelings which try to penetrate deep into my soul, I decided to look back into my blog to the weeks and months following my first procedure (May 20, 2010). My hope was to find some encouragement that YES, things will get better. Low and behold, there it was. The evidence almost mirroring my physical state of today. Post-procedure in May 2010, I was feeling rather horrible until at least a few months in. At this stage where I'm at now (one month post-procedure), I was actually starting up IV prednisone treatments because of increased numbness. I would say at this point, my numbness is about the same as before I went in for this latest procedure. I guess I can take that as a good sign? I know that by the 2nd month after my procedure last year, I was feeling great (energy-wise) so I pray that this is something on the horizon for not only me, but also for my family. Patience is so difficult. My entire being so desperately wants healing NOW.

I have been reading a book this week which has been a real encouragement for my soul, retraining my thinking to stop battling with God over this entire painful process called life. Here is a quote from the book which I found especially interesting:

The question is this: What would you do if you were absolutely confident God was with you? Suppose you go to the doctor to check out a few annoying symptoms, only to find out you have multiple sclerosis. What would you do if you were confident God was with you? The point? Simply this: When you respond in your current circumstances as if you were confident that God is there, you will see God in the circumstances. Maybe not immediately, but eventually. Because the simple truth is that God IS there. God is always there. The problem comes when we allow our circumstances to distort our perspective and we miss God.

One more full day before hubby comes home. I will have then survived 5 days on my own. Sounds absolutely silly and ridiculous to hear myself say that. I have always been able to take on anything. Five days on my own without another parent? Is that really such a big deal? I must say I miss his encouragement and prayer for me in the mornings. It really helps to start my day in a positive direction. We take turns making the coffee every morning at 7am and bring it back to the other person in bed, while the kids watch a DVD (yes, all in our king sized bed), and we then share a loud (it's never quiet in our house) and giggling few moments together: sipping coffee, tickling the kids while they try to watch their DVD -- it is some of our most precious times together. I really miss that.

So really -- what's the big deal with parenting on your own for 5 days? Without energy -- it becomes a very daunting task (unless of course one employs Alice [from the Brady Bunch] to help out with all the meals and housecleaning .. then it wouldn't be so difficult). Don't get me wrong, I am not complaining about having to be a parent (even if on my own). My kids are a HUGE blessing to me, as not only do they provide me with constant love, affirmation and joy, they keep me from giving in to self-pity and they definitely keep my momentum going. So I pray for the strength to do what I need to do each morning. I pray for the strength to look only at the few moments ahead, not at next week or next month -- just today. The only problem with placing those blinders on is that it makes me feel as though life is running off ahead without me. Again, back to the challenge of finding (and trusting) God in all my circumstances.

Flu Season

2011-01-28T18:36:00.000-08:00

Well I guess I couldn't avoid it forever. My family has been through a *MILD* case of the flu. I am grateful as it could have been much worse. However, I managed to jump on board with the rest of them, so I've been rather under the weather since Monday (it's now Friday). Would love to report some positive gains, but I've taken quite a few steps backward with constantly feeling nauseous (at least all of us have been, so we don't have to make huge meals). While everyone else bounces back quickly, I seem to take a LONG time to get back to where I was -- and even at that, I hadn't established a new normal yet. I don't know what my normal should look like at this point. Life seems to be flying by well enough without my intervention. The world keep spinning, and taxes keep increasing. Thankfully, the hugs from the kids keep coming. Grateful for my blessings, I keep pluggin' along.

In faith

2011-01-22T15:28:00.000-08:00

Right side feeling very weak today. Very discouraging.

You said
You´d never leave or forsake me
When you said
This life is gonna shake me
You said
This world is gonna bring trouble on my soul
This I know

When everything falls apart
Your arms hold me together
When everything falls apart
You´re the only hope for this heart
When everything falls apart
And my strength is gone
I find you mighty and strong
You keep holding on
You keep holding on

When I see
The darkness all around me
When I see
The tragedy has found me
I still believe
Your faithful arms will never let me go
And still I know

When everything falls apart
Your arms hold me together
When everything falls apart
You´re the only hope for this heart
When everything falls apart
And my strength is gone
I find you mighty and strong
You keep holding on
You keep holding on

Sorrow may last for the night
But hope is rising with the sun
Its rising with the sun
There will be storms in this life
But I know You will overcome

When everything falls apart
Your arms hold me together
When everything falls apart
You´re the only hope for this heart
When everything falls apart
And my strength is gone
I find You mighty and strong
You keep holding on

When everything falls apart
Your arms hold me together
When everything falls apart
You´re the only hope for this heart
When everything falls apart
And my strength is gone
I find You mighty and strong
You keep holding on
You keep holding on

The low down

2011-01-19T11:40:00.000-08:00

A friend contacted me today asking me how I *really* feel.. as I haven't said much lately. Okay, here it is:

This morning, my hands are cold. They seem to fluctuate back and forth. Prior to the procedure, they were generally warm. I wonder if this is part of a healing process, as after my first procedure I had the fluctuating back and forth from cold to warm a lot too.
Last night from around 8pm until 11pm I was not having a good time. My right leg felt as though it was going crazy.. I wanted to pull it off and throw it away. I can't describe what it was doing.. like my skin was crawling and I just had to get rid of my leg. I then felt like I had been there before -- sometime in my past, but when? AHA! I then remembered! Years ago after my lung surgery, the hospital had been giving me demerol shots. But, upon leaving the hospital, at home I had to deal with withdrawal, and it was not pretty. It was then that I had the same feeling in my legs. I have no idea why this would happen again, perhaps because of all the aspirin I have been taking, and I have been phasing it out in the last 24 hours?
At the same time as the leg thing started bothering me, my bladder issue went crazy. (Where I feel the urgency to go, but I don't really need to go). So it was a double whammy of mental anguish. I had no idea how I was going to go to sleep with this type of mental discomfort. I paced and paced for quite some time (as movement helps distract me from those feelings), took one 325mg aspirin and then went to bed, playing with Kirk's iphone. Shortly thereafter, I lay my head down and fell asleep. Is it an aspirin issue? I had a good night but woke feeling very tired (what's new?)
I've also had ringing in my ears the last three days and I don't know why. Again I'm wondering if the higher doses of aspirin in my system are playing a role.
Even though I'm having strange things happen to me each day, I can feel a little stronger each day. And remember, I'm trying to cut back on the aspirin each day so while I still feel neck pain (just a dull aching feeling now), it's because I'm lowering my doses and hopefully there will be a day soon where I won't need it at all and can function without it.
It's so hard to judge as to if my feet and leg numbness on the skin is better or not. How does one judge when one's tool for judging is one's hands.. which are also numb? Post procedure, they have actually become more numb. So it is very difficult to tell what is numb or not when I use my hands to feel.
Emotionally, I still walk on thin ice. One moment I am coping fine, telling myself I am hanging in here for the long haul, not expecting changes right away. Another part of my day, I will be somewhere which will trigger tears within me as I re-live all the losses from the past year. It definitely is a constant battle to fight away depression which knocks on my door. It is easy to give in to it if you start allowing yourself to posture an attitude of entitlement. It's definitely a training of my heart each and every day to try to focus on the moment and my blessings of NOW, rather than all the losses.
I can't say that I have had much pain, but mind you, you tend to get used to a "new normal". I feel every day like I have a slight flu .. just that overall aching feeling. Certainly nothing debilitating.
The itching on my skin (on my arms) has almost been non-existent, except for a day or two last week, so that has gone down. Hopefully it never comes back!
Brain fog? I don't know.. I can't remember. Seriously, I haven't noticed any issues, but I haven't had to challenge my brain lately.
My voice is still fairly crackly, so that hasn't gone away. Still hoping!!!

Can't think of anything else at the moment. I'll update this as I remember symptoms.

Day 10

2011-01-16T23:04:00.000-08:00

Well, I didn't make it to church today, but I did make it to some friends for brunch! I actually felt okay until mid-afternoon, at which point I felt my body quickly draining of all energy. I managed to push myself through the rest of the day with a trip to Costco for some much needed groceries and an important church meeting in the evening. Probably not the best choices for my body as it really screamed at me to go lay down to rest.

I should note one change I noticed today: I have a ringing in my ears which seems to come and go. I hope that it's something that won't stay, perhaps just something telling me I'm needing more rest?

I am thankful that I was able to do as much as I did, and hopeful that tomorrow will bring the ability to do as much or more, with less fatigue.

Some of you may know my brother has Parkinson's Disease. He is having a very difficult time right now and would greatly appreciate your prayers. Merv's Blog

Day 9

2011-01-15T23:26:00.000-08:00

I have had a rough few days. Just after I wrote on Day 6, I started to having an increase of pressure and pain in my neck, left side. It increased for the past 36 hours so I changed from Advil to aspirin (thinking maybe it would help prevent any blood clots that might want to pop up). I decided to go into the local hospital today to ask them their opinion. I really didn't have anyone to answer my questions about these symptoms I was having, and needed someone that knew. Well, as it turns out, the doc in the emergency room told me he really had no experience with jugular vein issues and didn't know what to tell me. He talked with a radiologist and they decided to at least do an ultrasound of my neck to see if there were any issues (clots, tears, etc.). After spending a few hours in emerg, I found out that the scan looked fine, albeit some inflammation. So, I guess I just take longer to heal than normal? My IR mentioned that perhaps because I had the left IJV ballooned last year, and this latest treatment was quite agressive (with an 80% blockage), that this might be a reason why it's taking a lot longer for the inflammation to calm down.

Good news anyway. I just have to keep taking it easy (THIS IS HARD FOR ME!). At least the snow has all melted, and with that, the temptation to shovel the driveway. Wait, what is that I see where the snow used to be? Weeds?! (Kidding, I'll definitely resist that temptation!)

Day 6

2011-01-12T17:54:00.000-08:00

What a contrast from yesterday. Last night I had a fairly decent sleep. I woke a few times, but not from pain. This morning I felt a little off, but nothing that would keep me in bed as yesterday's beginnings! Very encouraging indeed.

I continue to feel weird feelings of warmth and tingling in my feet. I am hoping that this could be the start of some changes to my numbness. I can only pray. I had a little more energy today and was able to get out and do an errand. It makes one feel almost normal when one gets to go out and do the same things other people do (even if they are menial tasks)!

I received my printed procedure report today from the Seattle clinic, which I found very enlightening. I will include some of it below:

IMPRESSION:
Bilateral Internal Jugular vein stenoses: 80% left / 80% right
Azygous vein genu stenosis (80%) and Left Common Iliac vein stenosis (80%) treated with multi-level angioplasty successfully.

Amazing that I had such blockages .. no wonder I was feeling so terrible last year! I can only pray that improvements are impending!

Day 5

2011-01-11T10:15:00.000-08:00

I have NO idea what happened. Sometime during the night, my body seemed to take a turn for the worse. My husband in the middle of the night asked if I was okay. I apparently kept moaning in my sleep. This morning when I awoke, I could barely move. I felt like my body had been hit by a truck. Breathing and blinking took all the energy I could muster. "How am I going to function today?" I thought. I asked my husband to get me another Advil .. hoping that would at least help a little. In about an hour, I was able to move a little. My eldest son helped me out (before leaving for University for the day) by making me an egg and coffee in bed. So here I sit, borrowing his laptop in my bed, at 10:00am. I'm at least able to sit up now without feeling like I'm going to pass out. I'll really have to be proactive to keep on top of my Advil dosing today! Seeking out something to give me a positive focus on my day, I thought I'd type in "daily devotional" into my laptop search engine. Normally you would be given a list of search results to choose from. Rather than a list of options, it went straight to a web page which promptly loaded on my screen (http://odb.org/2011/01/11/why-not-now/). I thought it was very odd that it went directly to a website rather than giving me google's results. I really didn't expect it to have much relevance since I wasn't able to "choose" which page I wanted to see. Contrary to my assumptions, it was very fitting to thoughts which often pop into my head. I thought I would share it with you today.

Why Not Now?
January 11, 2011 — by David H. Roper

I have a dear friend who served as a missionary in Suriname for many years, but in his final years he was stricken with an illness that paralyzed him. At times he wondered why God allowed him to linger. He longed to depart and to be with his Lord.
Perhaps life is very hard for you or a loved one, and you are wondering why God has allowed you or your loved one to linger. When Jesus said He was going to heaven, Peter asked, “Lord, why can I not follow You now?” (John 13:37). You, like Peter, may wonder why entry into heaven has been postponed: “Why not now?”
God has a wise and loving purpose in leaving us behind. There is work to be done in us that can only be accomplished here on earth. Our afflictions, which are for the moment, are working for us “a far more exceeding and eternal weight of glory” (2 Cor. 4:17). And there is work to be done for others—if only to love and to pray. Our presence may also be for the purpose of giving others an opportunity to learn love and compassion.
So, though you may desire release for yourself or a loved one, to live on in the flesh can mean fruitfulness (Phil. 1:21). And there is comfort in waiting: Though heaven may be delayed, God has His reasons. No doubt about it!

Not so in haste, my heart!
Have faith in God, and wait;
Although He seems to linger long
He never comes too late. —Torrey
Our greatest comfort is to know that God is in control.

Day 4

2011-01-10T20:19:00.000-08:00

I read this today in my research of pain post-procedure:

If your symptoms/dysfunction improved only slighty and only for a brief period, you should wait at least 4 months before considering a 'tune-up.' This is because you can only have 3-4 repeat venoplasties before considering a stent that has increased risks, and because it may take this long for CNS flow changes to stabilize. On post-venoplasty testing we have seen that sometimes flow may even appear worse during this stabilization process.

I found the last sentence interesting. I have heard from multiple sources that it may take the body some time to recover and might even have more symptoms -- so I hang on to being positive and trying to rest and heal. It feels like life is going in slow motion. I am finding now that school is back on, I have so many places to drive the kids, etc. that it's hard to rest. But what choice do I really have? I'll just have to try to rest in the midst of it all.

A few times today my feet felt weird, hot and provided a sensation almost as though I could fully feel them again (not being numb). I'm not sure if that was in my head, or if it was the increased blood flow. Time will tell.

My hands have been very numb today and full of discomfort, but I forgot to take my Advil again today (tisk tisk) so I will take some now and hopefully have a restful sleep to alleviate some of that pain.

I may not write for awhile, at least until I start seeing some changes. I am enjoying being off Facebook. I miss being "up" on what is happening with everyone that I know, but it has provided me with some rest time, and with the time I would spend on FB, I now spend with my kids, and that is never a wasted moment!

Day 3

2011-01-09T23:04:00.000-08:00

This will be short, as I'm reaaaaaally tired and it's very late. I have had some out of town company and unable to write until now.

There isn't much else to note today except I almost see an increase of discomfort in my neck and body core. Also, my hands and feet seem to be burning more (ie electrical type pain). This could be due to my body's immune response. The IR said to me that Advil was a good idea after the procedure, especially to keep inflammation down. I tend to stay away from pain meds unless absolutely necessary, so I often forget there are other benefits other than just alleviating pain. So, after a sleep that wasn't very restful, and a morning filled with discomfort, I decided to be more consistent with the Advil and I must say it has helped quite a bit. So I am going to try to keep on top of it every 4 hours. The only problem with that is, the better I feel, the less I will rest. It's just a problem I have. I see what needs to be done and I MUST do it.

Let's take snow as an example. I LOVE snow. For those of you that know me personally, you will know that that is a complete understatement! One of my favorite things to do in life is to shovel snow. So, imagine my surprise that this morning we woke to a dump of snow covering everything. I know that I couldn't shovel it, but it was very tempting! I wasn't even dressed yet and I heard something out side, only to find my husband shoveling the driveway! He had gotten dressed quickly and gone outside to shovel before I could get the idea to go out and do it myself. It's just what I do.. I can make bad choices because I think "I can do it". It's hard to learn to rest, rest and rest more.

Thanks again for all that are helping with meals and even other means of support, prayer, etc. It means so much to us!

Day 2

2011-01-08T19:26:00.000-08:00

Finally, we are home! Our poor van has put on a lot of miles this past week! It has been a very busy day: having a scrumptious breakfast at the hotel, followed by some more swimming by the fam (not me), and then packing up and leaving for home. Of course we had to stop at Trader Joes for some groceries before heading back into Canada. The unpacking still hasn't been completely finished, but it will have to wait.

I am finding the days post-procedure are MUCH different than when I was in Poland. The second day post procedure in Poland we went sight-seeing in Krakow for the entire day. I cannot imagine doing that this time. I'm still contemplating whether or not I'll make it to church tomorrow! My neck is very very sore and I'm trying to keep the pain down with Advil. It probably will just take awhile.

Have I noticed any improvements? It's hard to say. I haven't noticed an increase in energy. My feet are burning more, yet, I'm not sure if the burning is a different feeling than before? It's almost as if it's a cold burning rather than a hot burning feeling. So maybe it is a positive thing? I know that I don't expect any changes for a long time. I'm going to give myself a break and not expect big changes right away... if at all. This is just something I needed to try (doing the procedure with some thoroughness!) and I've done what I've set out to do. Now I just need to leave it to my body and to the Lord.

For now, it's good to be home, yet that always brings inherent danger -- for I tend to do more than I should when I'm here. Trying to take it easy for the next few weeks (doc's orders) will definitely prove to be a challenge!

Day 1

2011-01-07T19:02:00.000-08:00

Post-Procedure ..do I look a little drugged? ha ha

Well, all I can say is WOW, am I ever impressed with the Vascular Access Center in Seattle! Not only are all the staff friendly and accommodating, they are extremely knowledgeable professionals. I cannot say how long my procedure lasted, as they had me under awake sedation. I don't have the report yet, so I will provide details later. However, I was ballooned in all veins: iliac, azygos, and both jugular veins. I KNOW that my first procedure didn't have this much done. I am very happy with the thoroughness of this procedure and I'm TICKLED that it was within driving distance from my home. I didn't have to displace my children (they were with us in Seattle) and the family stayed together. They were only without their mom for five hours!

On the other hand, the procedure was painful this time. In Poland, I felt almost nothing during the procedure, maybe a little bit of pressure, but nothing really. This time around, it was rather uncomfortable, especially when doing the jugular veins. But they were quite blocked apparently. I remember in Poland, with other people being treated with stents, their necks were quite painful after the procedure. I had no pain after the first procedure. I did not have any stents the first time nor did I have any this time. Tonight, however, my neck is very stiff and sore and I'm feeling very drained -- differing greatly from my first experience. I am hoping that perhaps I will show greater improvement than than first time around.

Well, there's my quick update.

Deja Vu

2011-01-06T22:21:00.000-08:00

Well, I thought I'd post a quick update before I head off to bed for some hopefully DEEP and restful sleep. I have just spent the past week with my family in Oregon, vacationing. On the way back home, we have now stopped in Seattle, staying in a hotel for a few nights -- and tomorrow morning I will go to a local clinic for my second CCSVI procedure. We spent the afternoon and evening together, going out for a great meal (and throwing peanut shells on the floor), swimming in the hotel pool, eating popcorn, and giving lots of hugs. In trying to recall my feelings from the first time around.. on the night before: Was I pensive? Was I excited or anxious? I honestly cannot remember. I think most of my issues were with trying to figure out how the lights in the Polish hotel turned on! (It's not a simple light switch!). I think tonight I'm too tired to feel anxiety. I have been through it before, so I kind of know what to expect so the "unknown" is out of the picture. I would like to equate my calm feelings to God's grace in granting me peace about this procedure.

Tonight, as I recall the day spent with my family, I realize that I'm blessed. Yet, I do know that I have a failing body and I need to give it one last shot at trying to gain some physical well-being for them.

My 4 blessings

I will keep you posted as to how everything went .. my appointment is an early one at 8am.
Thanks for your prayers!

I'll just have to watch ELF to see New York ..

2010-12-10T19:36:00.000-08:00

As I sit here distracted by the pain in my body, I am trying to sort out the feelings tumbling around inside me. Do I seek re-treatment? Will it help? I must try. What if it doesn't help?

With respect to re-treatment for CCSVI, I found a location closer to my home and have decided to choose that option, because it will save us a lot of money in doing so! I'm sure New York is amazing this time of year (cold and snow), but I'll have to settle for Seattle's rain.

I have an appointment for my next angioplasty on January 7, 2011. I think somewhere along the way I have lost a lot of my ability to hope for better health in my life, and faith that that it can happen. Yet, somewhere within me, there is something that wants to give it one more shot -- perhaps there is a little fight left in me.

For those of you who have supported us in the past, family and friends, we would greatly appreciate prayer during this time. Prayer for safety and peace for our family, especially the children.

The cost of this procedure is $5,800 US, which I think is a really good price compared to other places. Some of you have mentioned to me over the past year to let you know if I started fund raising again (should I do another procedure). Honestly, I don't think I will do active fund raising. For those of you who know me well.. I have a hard time asking for help ;) However, I wanted to respect those who had asked, and let them know that I was doing the procedure again. The only problem is that I cannot remember who asked me about it!! I am hoping that at least this way I will be able to contact those people that had asked to help! :) So, those who want to give towards our trip, please contact me through email or this blog.

For now, we appreciate your continued prayers for strength for our family as we walk this road.

New York

2010-12-06T22:53:00.000-08:00

Every year as the Christmas season comes upon us, my family has a tradition. It may not be as popular as baking Christmas cookies, or decorating the tree together, or even going carolling. My family loves to watch the movie ELF. It's such a light comedy, filled with funny sayings and sillyness, that it always gets each member of the family giggling. It's become one of my favorite events, and memories!

This year as we watch ELF together, it brings thoughts of my own struggles with MS -- and how over the past 4 months I've made a steady decline. Was it really not that long ago when I was riding bikes, jogging around the lake and playing with my children in a park? It feels like a century ago. What was once do-able last year, is now a "are you kidding? I could never do that without MAJOR punishment from my prison guard, MS". The movie ELF was filmed in New York, and as I watch the scenery of Central Park, and the Empire State Building, it makes me wonder when Albany will call and say "you're next!". I still hold out for New York for the CCSVI procedure for various reasons. One, the low cost there compared to the much higher cost at other centres closer to my location, and two, from what I hear they are VERY thorough. I consider this to be my last shot. I cannot see me doing it again for a third time (if necessary), at least until it's performed here in Canada (or should I say "if" it's ever performed in Canada). I'm not even sure how we'll afford it at this point, but to me, an attempt at better health is more important than getting to retirement without debt.

For now I must wait and be patient. It's a little more difficult to be patient these days, for a lot of those days (maybe 35% of them) are spent in bed or on the couch. I haven't had a "good" day in months. It's either complete write-off days or crappy days. Intense pain that feels like a giant mosquito bite from hell is my new constant companion. It started a few weeks ago on my left arm, slowly encompassing my entire left arm and now it's starting on my right side. It feels like a mosquito bite that you've scratched -- that intense pain after you've scratched and so wished that you hadn't! I don't sleep well as the pain keeps me awake a lot of the night. How does one remain positive throughout all of this and not go crazy? How do I prevent myself from trying to see what lies ahead behind the door of the future? I should just leave that door closed, for in reality, what if it shows something frightening on the other side? That I couldn't bear! But, on the other hand, what if it shows freedom!?! I take a deep breath and say once again, "It's in your hands, Lord". But I struggle so greatly with this long road and all the pain and fear that nags at me along the way.

Lord help me to be patient in this process, and most importantly please keep my heart soft, so that even in times of pain and sadness, I can see the needs of others. I do not want to be a burden to others, but rather an encouragement. Let me live out Philippians 4:8 - And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise.

In faith, God Is Enough!

Yeah.. I'm done with the annual Christmas photo!!

2010-11-15T16:40:00.000-08:00

Oh Holy Night Religious Christmas Card

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A post from my brother's blog

2010-11-13T19:15:00.000-08:00

My brother Merv, who is battling Parkinson's Disease, maintains a blog, which can be found at http://mervbest.blogspot.com

He writes:

Saturday, November 13, 2010

God is enough, right Dawna?

Me and sis making an early mess!

Suffering Christians share a comradeship much like that of those who've been wounded together in a great battle... like survivors of D Day... and, it's the only army in the world that one can serve with his kid sister! Hang in there Dawna, we are gonna "fight" this good fight together...

"When we are consciously aware of being used as broken bread and poured out wine, we have yet another level to reach - a level where all awareness of ourselves and what God is doing through us is completely eliminated. A saint is never consciously a saint - a saint is consciously dependent on God." Oswald Chambers, My Utmost for His Highest

A world without Facebook

2010-10-31T00:20:00.000-07:00

Time for another update, if anything, for me to keep track of little changes here and there.

My voice is continually raspy and crackles all the time. Sometimes I lose the ability to talk loud enough and all that comes out is a whisper. Frankly, it's a very disheartening symptom, but I can cope with it as long as I don't think about how it could potentially worsen as time progresses. I think it's been like this for two to three weeks now.
The zapping pain my feet has been a little less severe the past few days, but along with that the bladder torment (feeling like I always have to go, even though I don't) has greatly increased, and I've opted to use my meds for that the past 3 nights.
My brain fog is a lot worse this week. Sometimes I just can't seem to get clear thoughts out into words, and other times what I do say comes out backwards.
My fatigue is the worst it's been for a long time. There are days when I'm in bed all day, and others which I can seem to drag myself around doing my daily tasks but simple things like walking up and down the stairs is tiring. I don't think I could walk around the block without exhausting myself.

I have put my name down on a wait list to have the procedure done again, this time in the US. It would have been nice to have Canada run with it at this point, but I cannot see that happening for quite some time -- and even at that, I'd like to go somewhere that has a bit of experience. Yet, where will the $ come from to walk this road again? I really have no clue. All I know is that I have to at least try -- one more time.

My emotional journey has almost been as difficult as my physical one. This past week was the week when my baby would have been due. That definitely was a hard week for me. How I longed to hold this little one, to show Julianna her little sibling -- she would have made an amazing big sister! How does one fill that hole? It feels like a part of our family is missing. I struggle with why God would allow that unexplained pregnancy, and then allow it to be taken from me. I feel the pain every time I see someone pregnant or that new little baby. I keep asking God how long it will take for that to heal.

Along with those emotions comes the mourning of losing the abilities that I cherish -- being able to physically play with my kids, going for walks (or jogs!) around the lake, or even wondering if I'll be able to shovel the snow off the driveway this winter. It's as though I know what I should do in giving it all over to God, but yet, another part of me just doesn't "get it".   Maybe it's the brain fog preventing me from retraining my thought processes... or something else.   I'm trying to do what I can to focus on the positive, and take one step at a time.   I had been finding lately that it was difficult, at times, to watch people's lives on facebook -- lives full of activities and other things which I did not have.   As selfish as it sounds, it was difficult for me to be glad for others who seem to have everything going for them. When I say that, it sounds so juvenile -- yet it's what I struggle with. I struggle with watching people jog by my house .. struggle with wanting to yell out to them "do you REALLY know how fortunate you are.. do you really appreciate what you have?".   I then realized that I need to take some time off from the facebook world.. time to focus more on what I did have, rather than what I didn't .. and facebook was definitely distracting me towards all that I didn't have. So, as technologically driven as I am, I deactivated my account. It felt VERY odd in doing that.. but as I did, it also felt freeing. I can't really explain it. A load lifted perhaps.   In this past week, I have used the previously allotted FB time to focus on trying to keep the house more in order and most importantly, more time with the kids (even if that "more time" is just laying on the couch reading to them).

I have always been a very static person emotionally, so this constant state of always feeling like I'm hanging onto the end of a rope, with my hands slipping, is a very challenging place for me to be. It has made me live moment to moment, as looking to tomorrow is just too overwhelming.   All this to say, that there are people in my life who bless me greatly, their support holding me up daily.   My brother, my rock -- without you, this road would be so much more difficult. God knew that I needed you to walk this road with me, although I continually pray that He will heal you first -- after all, you had Travel Share (inside joke). My husband has been so supportive and providing me with hugs. Friends and family pray for me and that has been such an encouragement in knowing I'm not alone.

I am realizing that I have so many things that I need to work through, spiritually.   I know I have a growing fear of "what's around the corner". So many things have happened to our family, from house fires, to lung surgeries to e.coli and M.S. -- it's a battle for me to fight the fear of "what's next". God give me the strength to trust you, and fight against all those fears which want to envelop me.   Help me to see ways in which I can bless others, and focus less on my pain and loss.   Oh Lord, speak to me -- let me hear your voice, guide me, show me what you want me to do - I don't want to feel like I'm walking this road alone.

Thanksgiving

2010-10-11T19:29:00.000-07:00

... and yet another week goes by. Did I notice? Not really. I spent whatever time I can these days laying down as I just don't have the energy to do much. My body is always in pain and it wakes me up at night. Today, Thanksgiving Day, I spent the day in bed sleeping off and on until around 1pm. I had barely enough energy to turn from side to side. It's times like this that make me so sad, to see that I'm missing out on family outings or just plain ole playing with my kids. I would have loved to go out for a Fall hike today with the fam.

I have old MS symptoms showing up again -- my hands are starting to become cold like ice again, and I am experiencing some temporary (off and on) weakness in my right leg.

On the other hand, there is so much to be thankful for. A family that I did not know personally, but rather heard about through friends, recently lost their 5 year old daughter to a brain tumor after fighting their battle for two long years. I cannot imagine the heartache that this family is dealing with. It reminds me of the e.coli situation we dealt with with our boys, and delivering baby Julianna while they were hospitalized -- and not knowing if they would end up in heaven, or end up recovering. What a stressful time that was. So it brings all that back to memory and makes me very thankful that I'm in a season where my children are healthy.

This time is bittersweet I suppose -- thankfulness of my family's health yet sadness that I cannot partake in living life with them. One minute at a time.

Short Update

2010-10-03T20:35:00.000-07:00

Just about a week since last post, and things have only gotten worse. If I could, I'd spend most of my time in bed, but can't due to family obligations. On one hand, however, it's better that way because it keeps my mind off of feeling so horrible.

There have been some new symptoms this past month, some which I've never had before, which include:

Nausea after I eat any food
My voice is starting to crackle when I talk
Consistently not sleeping well at night

This down turn is so disheartening. I don't have the energy to go out .. let alone even go out for a simple walk. I won't go into how I'm feeling emotionally, cuz it's not great. Just wanted to post, mainly for my record, the changes that seem to be occurring rapidly.

Disheartening

2010-09-27T08:51:00.000-07:00

Well, it's been a month since that silly fall off my bike, and that day brought on the painful zapping/tingling in my feet and hands, which has not subsided even for a minute. It often wakes me up at night -- I dream that I'm in pain and wake up realizing, that it's not just a dream, it IS my reality.

Yesterday I woke up feeling like I had the flu, took a Tylenol and waited for some relief. When no relief came, I knew it was my MS targeting me once again. I spent the entire day in bed with a heightened pain my body and extreme exhaustion.   Hoping for a better day today, I woke up today and realized that I wasn't better, but rather much worse. With each breath that I take, the ache (now also in my chest) makes my chest feel like it has to lift a heavy weight just to breathe. Somehow I must continue with my day, taking my children to the places they need to go, and somehow function like a normal human does.

I must confess that with each passing week, as I continue to seem to worsen (especially over the past month), I think more and more about whether I should have the procedure redone. I'm game to do it.. there is a huge issue of finances which blocks that thought. Is it worth selling your home over?   Is it worth incurring more loans? At this point my answer is a resounding YES! This is not a life that I want to deal with every day -- the pain and the lack of function and ability to play with my kids.

My mom once asked me while in a hospital bed, to release her and allow her to die. I couldn't believe that she had asked me that. .and I told her I couldn't do that. Looking, back, I see that I was very selfish .. I did not want to lose my mom. But I also now understand her side of things. Living in pain day by day is very difficult and it makes you long for heaven, and the things of this world lose their sparkle.

I feel defeated and run down. I pray that the Lord will grant me the strength to continue for another day, or I suppose I should be focusing right now on "minutes" instead of days.    With each aching breath that I take, I pray that the Lord grants me the ability to treat those around me with kindness and gentleness and to not get lost in self-pity.

Memories by the handful

2010-08-26T23:03:00.000-07:00

As I lay here in bed, all I can say is WOW.. what a glorious day!   I must admit, I was a bit skeptical this morning when I looked at the weather outside my window. It looked mighty gray and stormy -- and after changing locations to peer out a different window (one without smudges and handprints from tiny hands), it still looked like we were in for some unpleasant weather!    We had booked today to go into Vancouver with some friends to cycle around Stanley Park for the day and end the time together with dinner downtown.

I was very excited! Now that I have the energy to cycle, I couldn't wait to spent a day doing what I used to love to do as a teen! But first, we had swim lessons for the kids .. and as we walked to the outdoor pool, it started to downpour rain, soaking us by the time we walked the 3 blocks to the pool. Hmm... not very promising for a day full of cycling outdoors. Once we were through shivering and hovering under the eaves of the pool building for the duration of the lessons, we rushed back home and packed rain gear for our day outing. We hugged and kissed our kids and took off on our adventure.

By the time we got to Vancouver, the weather was MUCH better than at our house, so that was very encouraging. I then changed in the truck from the jeans I was wearing back into shorts, and stuffed away all rain gear and sweaters.   What a GLORIOUS morning this was, cycling around the Sea Wall, and ending up at a beach, in the sunshine. We dismounted and just walked on the beach for a bit, looking at sea life and just enjoying the view of the ocean. I, at this point, was still pinching myself that I was without kids and cycling with friends .. something I don't get to do often!

We decided to stop at the Ferguson Point Tea House for lunch .. only I decided to try more of an abrupt stop than the others. We were crossing a road, and I attempted to lift the top of the bike up to jump the curb, but I misjudged how heavy Kirk's bike was, and didn't lift it high enough, causing my bike to stop and me to continue to fly forward .. only my leg somehow got caught in the bike so we tumbled together. It must have looked pretty interesting, as I had some people rush to my aid and help me up. I actually couldn't get up because my leg was caught in the frame of the bike. The interesting part is, it didn't even hurt! I really do believe that I had lots of angels shielding my fall .. the only thing I thought was .. "oh crap.. I guess I'm going down now" .. and then it was.. but it was more like falling down if you trip and then you get back up. I only have a few light (and I mean REALLY light) scrapes on my leg above my knee no bleeding) and a slight nick on my pinky finger. Strange considering how we (my bike and I) tumbled. Gotta love those angels!

Following my graceful entrance to the restaurant property, we had a nummy little pizza and we were off once again to enjoy the back trails of Stanley Park. The day sailed by, and I swear we blinked and it was nearing 5pm .. where had the day gone? Didn't we just start? I didn't want it to end!

We drove over to the restaurant where we were going to have dinner, the Stone Grill (I think it is called) .. and decided that since we had 40 minutes left before the restaurant opened at 5.. that we would take the bikes and ride a bit around.   Only a few minutes later, we came across a young boy on a bike, maybe 10 years old, that was near tears and said that he couldn't find his mom.   We assured him that we would stay with him until we found his mom.. and went back to the location where he last saw her. Long story short, my friend and I left the guys with Andrew to go look for his mom.   We cycled for quite a ways west (as Andrew said his mom was jogging west). He gave us her description, black capris and a pink shirt. We looked and looked and couldn't imagine any mom being that far away from where she would have spotted her son missing by her side.   Finally, I saw a lady jogging towards us on our bikes, but her shirt was more of a white than a pink (I guess I had incorrectly assumed it would be dark pink). She had headphones on and was jogging like she really wasn't concerned about anything, so I really thought this couldn't be her, but thought I should at least ask. I spoke quite loudly to get her attention (as she had headphones on), asking her if she had a son named Andrew. She looked at me and responded, "Yes." I was quite surprised as I was expecting to find a distraught mother looking for her son. I then told her how Andrew was very upset and unable to find her. Her response to us was two words, "stupid kid" .. to which she just started jogging away from us, continuing to head east.   I just sat there looking at my friend in amazement. Did I just hear that correctly? Did she just say what I thought she just said? I asked my friend, "Uh.. does she not want to know where he is.. does she not CARE where he is?"   I turned my bike around and raced back to catch up with her.   I asked her in I'm sure a frustrated tone of voice, "Do you not even want to know WHERE your son is?" I'm not even sure she stopped jogging while she asked "where is he" .. so we told her where he was and I said "we will be cycling up to where he is.. and waiting with him until you come to get him.. we won't leave him by himself".

We rode up to the guys, and waited for his mom to join him. As she jogged up to where we were .. she looked very frustrated, stopped beside her son and spoke quickly and harshly to him in Italian (he had told us he had just moved here from Italy two months ago).   His mother looked at us rolling her eyes as if again to infer "stupid kid" and then rapped her kid twice on the head with her knuckles .. not hard .. but enough to give him her "message".   She then just started jogging again, and left our location, and the boy stood there with his bike, completely deflated, hurt, abandoned and tears welling up in his eyes. I wanted to rush over there and hug him .. He needed a hug from him mom. But all he got was anger and rejection. As he quickly got on his bike to follow his mom who was already a block away, I quickly touched his shoulder as he drove past, and I cannot remember what I said, but I recall that I had wanted to give him a gentle, caring touch on his shoulder, and let him know he was a brave, strong boy, and that it would all be okay.

The four of just just stood there, our hearts broken for this little boy who only wanted to be loved and hugged by his mom, and received the complete opposite. By this time it was 5pm and time for our dinner reservation. It was so hard for us to get into the mode of dinner, our spirits were all so heavy from this experience, and I just wanted to run after him and give him a big hug.

It was difficult to get into dinner, but we finally managed to focus enough to enjoy our experience, it was incredible. They brought our steak out on a hot stone.. and it basically cooked as we ate it.. what an experience.. see it here: http://www.stonegrillvancouver.com/stonegrill/stonegrillsteak30.html

After our nummy dinner, we drove over to a place for gelato, and I couldn't decide so I had both Chocolate Fudge AND blackberry cheesecake. Ya, stuff normally on my NO NO list.. but hey.. this was my day off! Wow.. what a great day.. the weather cooperated.. the food was great, the tumbles entertaining, yet the meeting with Andrew sobering.

So, it is on my heart now to continually pray for this Andrew .. whenever I think of him, I am praying for his spirit to be lifted, for his mom to gain compassion for her son, and for God to reveal himself to that family and heal that relationship.   I came home and hugged my kids over and over and over, and after I told them my story of Andrew, my little 7 year old Daniel Andrew Austin had tears in his eyes. My Daniel has such compassion for others, I knew that if I told him the story of Andrew, he would join me in the mission to pray for this little lost boy .. that someday he might know the Lord and find love, security and more hugs than he can imagine!   Andrew, wherever you are out there.. know that you are cared for, and that we are praying for you!

Thank you Lord for the blessing of great friendships, the immense gift of being able to cycle and experience your beauty in nature, the protection for my body when I attempted to audition for Cirque du Soleil, the amazing food we were able to experience, and even for placing us in the right place and at the right time to show Andrew some care and love.   What a full day, I thank you greatly for these amazing memories and for the loving hugs that surround me each and every day.

Back up to speed

2010-08-18T22:22:00.000-07:00

Just a quick update since last week. It's now been almost 7 days since that cold hit me square in the face! Now that I'm feeling better, my numbness has subsided a bit (but still quite substantial compared to usual) and my energy is almost back to normal -- 'normal' being having no abnormal fatigue at all. I managed to take the kids (with hubby) to the water slides for all day Saturday (Aug 14th) morning til 6:30pm .. in the 35 degree weather with tons of energy to spare!

Moral of the story for me? Avoid all people with colds. This truly was my first experience of getting a cold and having a skyrocketing of MS symptoms coincide. Not a very enjoyable feeling. It's kind of like getting a cold and a flu together. A 2 for 1 deal!

Started to jog again but feel I strained my knee again, so will have to back off and take it slower I guess - maybe do some cycling instead. Summer is coming to a close, so quickly! I think this is probably the first year where I'm not really happy to see it go. My heat sensivity is less, so I'm able to enjoy the outdoors more. I still am looking forward to Fall and Winter (and snow!), but the end of summer also means a LOT more work, with homeschooling and life just getting much busier. Oh well, I have a few more weeks to prepare to pick up steam, and pray for continued health in the midst of it all to be able to accomplish all that will be on my agenda.

Sorry for such a boring entry, but I need to log the changes in my symptoms so I have a record of it. :)

Colds & MS

2010-08-12T15:47:00.000-07:00

Ok.. so a few days ago, I started to feel off in the afternoon (August 8th) .. tingling in my feet and hands and just an overall feeling of disorientation. The next day, the sore throat came on, and following that, the cold and today just CRAZY exhaustion with this cold and sore throat.

Over the past few hours, the numbness in my right foot has increased greatly, and is climbing up my right side, now up to my waist again as well as both arms and hands. This numbness had subsided to a very minimal amount within the past few weeks, so it's disheartening to have it at such high levels again (makes shoe wearing uncomfortable).

My question to other MSers is this: Do you find that onsets of colds and/or flus bring on ms symptoms?

Jogging

2010-08-04T22:13:00.000-07:00

It's been a pretty good week. After figuring out I needed more calcium and magnesium, I got rid of some insomnia I had for a few days. I've started jogging again, only minimally to start things off slow. One minute walk, and one minute jog.. alternating for about 30-35 minutes. Next week I will make it one minute walk, and then 2 minute jog, one minute walk, 2 minute jog .. and again increase the jogging the following week to 3. So VERY exciting for me .. it makes me feel ALIVE! My numbness in my right side is still very strong, and my left side seems to even be increasing in numbness, which has me scratching my head. I think I am being impatient. My right foot is SO much better -- better than it has been in years. It is still numb, but no longer to the point of pain or discomfort.

One part of me wonders if I need to do the procedure again. I hear of people who have had it done and their numbness completely goes away. This makes me think, that since my azygos vein was missed completely during my procedure, I wonder if that is why I am slowing improving on some things, but in others, I seem to continue to decline (i.e. numbness on my left side). I keep hearing about places in the US opening up .. and even ones within a few hours drive of my home. This is MUCH more appealing that flying 12+ hours to a foreign country. This would mean my entire family (i.e. hubby & my kids) could come for the procedure. Well, at least this is a hopeful option should I choose to do this procedure again. However, because I am feeling so good energy wise and with the right foot feeling better, I feel I have the luxury of waiting to see if they continue to improve. If I don't have to look into another procedure, it certainly would be helpful to my family financially!

Anyhow, just a short update on my improvements.

Bladder isn't bothering me much .. it's just a background slight feeling, if I think about it.
Numbness isn't causing pain as it was in the previous month, although still quite severe in my hands and sometimes my face and scalp.
Energy level is superb.
Sleep is back to normal
Memory? Still not that great
Heat tolerance .. MUCH improved. I can stay in the sun for quite a while without my energy draining. My friend even asked if I was feeling okay when I said today, "I'm going to sit in the sun instead of the shade" (I'm well known for HATING summer and craving snow and winter)
Still no sign of my limp coming back (YEAH!)

While I still struggle with the circumstances of the past year and fears of what the future might hold for me, part of me wants to scream with joy because of the opportunity given me to experience life --- right now, with my kids and even being able to physically exercise (something I've SO greatly missed this past year). I feel blessed to have been given so much and cherish each moment, of each day. Thank you Lord for the gifts you have given to me this day. I pray that you allow this healing to continue!

July 31, 2010
My son (Jordan) & I cycling in Vancouver prior to the fireworks.

Is my numbness TRULY decreasing?

2010-07-28T12:10:00.000-07:00

Well.. it's been another week, and must say that things are still improving. I haven't had fatigue in a month or more. I have felt the strength of my muscles improve. Is it really possible that I could still be seeing improvements from the procedure in Poland? Does it realy take that long? Or, perhaps is my body just finally settling down from all the attacks I've had in the past year? I'm wanting to believe the first!

My right foot, which is where the symptoms first started, is actually less numb than it's been in a year! It's wonderful to be able to wear shoes again with them being very uncomfortable and constantly in pain. I have no pain there anymore, and only slight numbness. My right leg hasn't changed much though, and so wanting to believe it's like a garden hose. you turn the water on, and it goes from the source of water all the way to the end of the hose, and sometimes this can take quite some time to reach the end. Perhaps, in the start of my healing process, much like the flow of a hose, it is starting at the beginning of my original symptoms, my right foot. Perhaps it will move from there, up my leg and I'll continue to see healing of the numbness over time. At least that is my hope!

I actually jogged around our lake this morning, albeit it was a walk, then jog, then walk, etc. but it felt AMAZING to feel like I was LIVING again! We'll see how my body treats me tomorrow, but I just couldn't help myself, as my fast walk turned into the jog. I used to love to jog. As a teen, I would exercise often, and HARD .. it's just part of who I am. 110% or nothing -- all the way.

Julianna's Turtle Friend

On our way around the lake, little Julianna said "there's a turtle". I didn't respond because I thought she was being silly. But yes, there was a turtle! What a beautiful walk filled with God's amazing creatures (can live without the Can. Geese and their lovely droppings though). Even saw an eagle on the way too.

It's been a challenge to lay around so much the past year. I can only pray this is the start of something great, and not just a short season of health. I will continue to pray in that direction!

It feels great to play with my kids, run around with them, and be the mom that my heart wants to be -- and now my body will let me!