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.

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:

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.

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....

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.

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.

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!

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).

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.

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...

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.

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 …)

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.

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.

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.

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.

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.

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.

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).

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.

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 :)

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.

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.

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.

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.

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.

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

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.

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 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.

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?

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.

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 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.

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 complaining of dizziness again and also started a fever.

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.

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.

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.

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.

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!

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?

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..

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! :)

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 :)

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

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)




One day at a time..

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)

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.

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

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

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".