June was a pretty bad month.  I didn't post on this blog as I just didn't have the energy. Some have been asking how I faired the past month, so I thought I would upload my personal daily journal.


June 1/12 - (see previous post)

June 2/12 - Woke up with hubby sick .. took him to hospital where he spent the day.  Diverticulitis for him as well as a pulled muscle in his back.  Hard day for me as I had to take care of kids while feeling sick.

June 3/12 - Another long day with hubby sick.  Took major gravol tonight because I needed sleep.. slept better, but still feeling very toxic and disoriented.

June 4/12 - Skipped German and drums today.. just felt too sick.  Spend day with rachel at my house - I just lay on the couch.  Feeling horrible.. toxic, almost like I’m dying.  It’s a horrible feeling and it’s just so horrible to exist this way.

June 5/12 - Still feeling toxic.  Super dizzy, lightheaded and nauseous.  Had a hard time sleeping this night...

June 6/12 - Feeling horrible.. laying in bed all day.

June 7/12 - Exhausted today. Checkup with Dr. Louie on gums as they are receeding terribly and hurting. He wants to do grafting again, but I crashed so horribly last time.. I can’t see doing it again. Hubby went to see a physiotherapist for his back and his leg numbness went away.  Went out for homegroup to Wired Monk. Had gluten-free choc cake and coffee. Feeling ok, but tired.

June 8/12 - Felt so nauseated all night. no sleep.. super sick. Probably from the choc. torte and coffee last night?  Stomach starting to really bother me.  Horrible.. doubled my stomach meds and starting taking DIVOL plus for stomach pain.  Figured out later I am not supposed to be eating that type of stuff (coffee etc) due to it’s high acidic nature.

June 9/12 - Feeling a bit better.  Had a busy day, cleaning house, washing floors and vacuuming (very draining). Got kids registered for Friday Nite Bball and went out to Chilliwack for veggies.

June 10/12 - Almost feel human.  Was able to wake up at 8am. Haven’t been able to do that in weeks.   Made bacon and pancakes for family before church. I didn’t go.  Hands and feet burning less, although still doing so.  Fatigue less, but still there. Minimal bladder issues, if any.  Facial jaw pain minimal.  Gums still hurting.  Not feeling much weakness in my right leg at the moment.. Good?   Spent the day out at a family bday party .. did fairly well. Very tired but not feeling toxic.

June 11/12 - Went in to see my neurologist which was very disheartening.  He wants me to do injections again.  Felt like my life was over.. flashing before my eyes. The thought of that hell is just more than I can handle today...

June 12/12 - Had nightmares all last night of trying to kill myself in various ways. Obviously I’m more stressed about these injections than I realize.  I also had a dream where I was in front of the neuro for an appt. and he said to me, Hmm .. your scans came back clear, and as you have no symptoms, I would have to say you no longer have MS.  The joy and elation I felt at that moment was indescribable.   Unfortunately at that moment, I woke up.  Still reeling from the news of the shots. Whenever I think about it .. I just feel panic.  

June 13/12 - Took the day to stay at home and just relax. Do nothing. try to recoup.

June 14/12 - Woke up feeling exhausted and achy, feet and hands on fire, like people are taking a hammer to my toes.  Hard to do normal tasks. Just want to be in bed, but even laying on my body hurts.  Have MRI today to see what further damage has happened.  Had friends over for dinner, went okay. Final night for Interchurch baseball.  Sunshine so that was great for the boys to have fun.

June 16/12 - Couldn’t fall asleep and every time I did I was awaken by hubby's snoring.  Didn’t fall asleep until around 4am.  So exhausted.

June 17/12 - Skipped church.. made breakfast for hubby for father’s day.  He took them to church and I went back to bed.. took a gravol and slept off and on until 3pm.  I feel more human now rather than the horrible feeling of this morning.  Leaving tomorrow to visit friends .. so I need to get a good sleep tomorrow if I’m going to be up by 6:30am to leave :(

June 18/12 - Not a great night .. kids were up a lot .. too excited about going to see friends. Got up at 5:45am and left early to get there for 9:30am.  The trip takes 3 hours each way.   I did okay except once I arrived back tonight at 9:15pm , my feet and hands started to go crazy … burning.  So now i”m going to try to get to sleep with this pain.  Little J was near her wits end by 9:30 .. couldn’t stand being in the car and was melting down.  Brought a kitten home.. not sure it was the best idea.. but we’ll see how it goes...

June 20/12 - VERY bad hands and feet. Hurts to step on the ground. Tough since that’s how you walk and get places ;)   Almost through the process of getting financial aide for Avonex.  Just waiting for the final okay and then they will send in the order to Safeway and have the nurse do the training with me.  Fast process so far.  Decided it’s time to get back into full exercise after 2 years of being a blob.  Did some exercise bike today and some light weights for arms.  It’s a start. :)

June 22/12 - Didn’t do much yesterday.. just too tired.  Today, pain in feet and hands getting terrible. Have been taking gabapentin but not helping.  Got a headache today so took Aleve.  Got 100% funding for Avonex today. Safeway called and said I can pick up the drug anytime.  Will wait until nurse calls though, as I don’t need to get it earlier than necessary.  Need to get a fridge thermometer as the drug needs to be between 2 and 8 Celsius.  Tonight, I contemplated taking morphine, as my feet are in so much pain I can hardly walk on them.. even the tops of my feet now are just horrible.. I have no other way to describe the burning pain. Almost like I”ve taken a sledgehammer to the tops of my feet and I am left with the after-effect.  The entire right side of my body is now numb.  Even my butt .. is so sensitive like my feet it hurts to sit.  What have I left?   THere is no respite from this pain.  How can I live my entire life in this much pain?   I decided to just cry, and take 2 gravol.. hoping to knock me out so I can sleep. I am so emotionally exhausted. I don’t like life.. I don’t want to be here anymore. I have no choice.  God does not rescue me.  Somehow I must continue to fight, but I don’t feel any fight within me. 
It’s a battle.

June 23/12 - woke up today with feet worse than yesterday.. OW!!!

June 24/12 - didn’t sleep much at all last night.  Feeling so much pain in my feet, and now it is also in my arms up to my elbows.  Feel so discouraged and defeated.  Stayed in bed until 12:30pm  .. had lunch and got ready to go out with the extended family to bowling. Felt I should make myself do it to get outside of my sorrow.   It did help ..it was lots of fun and helped me to be distracted from my pain. They all came over and had pizza, again which was good, distracting from my pain.  Still don’t know how I’m going to gather enough faith to continue .. I feel so defeated and weak it’s hard to even want to try.

June 25/12 - Didn’t sleep much last night.  Too much pain.   Picked up the Avonex today.  The bill was $1,800.00 .. and that’s just for one month!   Thankfully, my bill was $0 … (as it is being covered each month).

June 26/12 - Felt REALLY weird today, very disoriented.  The only thing I can think of is I started on the new prescription for Gabapentin from Safeway, rather than my old one from another pharmacy.  I called SAfeway and they said sometimes the formulation can vary a bit, and try to go down from 4 a day to 2 .. and see if that helps.  It did.. The rest of the day I only took two 300mg's (one in AM and done in PM) and the dizziness was much less.

June 29/12 - Nurse arrived at 1pm today for my first Avonex injection. It is only a 1/2 dose... I will have a shot a week for 4 weeks and then I will go to full dosing.  My sister Marilyn was here, as she was able to get instruction as to how to do it for me.  The first 4 weeks, as it's only a 1/2 dose, is only in a syringe. There is NO way that I can inject myself.  I can barely watch the injection, let alone do it myself.   After the 4 weeks, it will come in a injector pen, so I won't have to worry about that, I'll just have to get the courage up to press a button to inject.  I am a little nervous about side-effects after I go to full-dosing, but I will cross that bridge when I get there.

I’ll leave out the details of this first injection, but it went well.  I was waiting for the “flu-like” symptoms to kick in after a few hours, but it wasn’t bad.  I had taken an Aleve two hours before the injection and a T3 just before, and then alternated Advil and Tylenol Extra Strength the rest of the day and was only slightly flu-like.  I went to bed hoping that I had missed the worst.  Unfortunately, I woke up at 1:30am fully in flu-mode.   I was achy from head to toe, and the rest of the night was fitful with dreams of being sick.  

June 30/12 - I spent the day on Tylenol and Advil, but making myself busy to keep my mind off my body.  I went out for breakfast with my sister-in-law and spent the morning at Wired Monk relaxing.  At times I had difficulty concentrating, but managed to pull off being “out”.  Later in the afternoon, we had company over until the evening, which was another good way of keeping me distracted. 
By May 25th, the pain my my feet and hands had increased to the point where I could not sleep at night anymore. I had contacted my neurologist and he was unable to set up the IV steroids as a course of treatment before the weekend. He suggested I go into emerg that day (Friday) to have them set it up directly at my local hospital. After a long 8-hour day waiting, it was then shift change at the hospital (7pm) and someone slipped up and didn't pass on the information to the next staff that I was waiting for a neurologist. Another hour later and the neuro left for the night, without seeing me. Once the staff realized their mistake, they called him on the phone and he refused to order the IV steroids, telling the staff to just send me home with morphine and to call my doctor on Monday. At that point I just broke down and cried. I had spend an entire day sitting in a chair waiting, no food, no water. I was exhausted. It was then 10pm. The resulting weekend was a blur. On morphine, I did sleep, yes, but it also kept me sleeping later than noon, and the rest of the day was a mental fog. Nasty drug! I managed to survive the weekend in that fog, not recalling much. Monday morning my neurologist's office profusely apologized for my misfortune, saying "that is not how it was supposed to happen" (referring to the hospital refusing treatment). So, they quickly were able to set up the infusions to start on the next day, Tuesday, May 29th at 2pm. One more day.. just one more day!! Tuesday came and I was VERY glad it did. By this day, my feet hurt so much, that it was very painful to put any pressure on my feet. Walking was NOT a pleasant option.  I had gone from 100mg of Gabapentin per day to 1200mg a day, and it still wasn't touching the pain.

Infusion Day #1 - May 29/12


This infusion was different.  Instead of a period of one hour to infuse, it was over two hours.  Now while this means I'm sitting in that chair for over two hours, I soon realized it didn't burn in my arm, and over the week, seemed to keep other side-effects away.  Normally, my arm wouldn't tolerate the IV for more than two days, but this time, I lasted the entire four-day bout without any arm irritation or redness!  Two hours is the way to go!!  My neurologist had prescribed Ativan to help with sleep, as the steroids can keep you awake at night, but no matter what I did, sleep did not come. I think I got only two hours of sleep this first night.  I had major leg pain that set in in the evening which made it very difficult to sleep.

Infusion Day #2 - May 30/12

Second day ... everything is going smoothly, just a little tired.    Jordan decided to keep me company which was nice.  I had also had an appointment with a head surgeon today regarding my facial pain from months ago. He says it is NOT MS related, but rather jaw deterioration. Stuck a nasty camera up my nose to see down my throat.. blech. With the clicking in my jaw, it's most likely deterioration that may have to be dealt with surgically down the road. He wants to see my MRI in July and also if it gets much worse, he will schedule a CT of my jaw and sinus cavity to see if there is possible infection which is causing the deterioration. Nice to know it's not all in my "head" .. well.. it is, but you know what I mean :) Bottom line: just because you have pain, it's not always chalked up to .. "It's just your MS".   
Stopped taking the gabapentin today .. I want to see how much I can handle and see if I am finding any improvement in pain.  My body is WIRED, yet so tired.  Thankfully, no leg pain tonight, and only feeling a little hot.  Very thankful the weather outside was cool, otherwise my increased body temperature would  have made any summer temp feel like a desert!   Took another Ativan tonight to help me sleep, but unfortunately, I only had around four hours or so this night.

Infusion Day #3 - May 31/12
Another rainy day, thankfully, because I was so warm it looked as though I was sporting a new sunburn!  This IV treatment day was mostly uneventful with respect to difficult side-effects. I can deal with feeling warm.   I find myself not thinking clearly.  This bout of steroids is really messing with my brain.  I find I have great loss of concentration and have difficulty focusing.  I'm sure it's just all that is flowing through these veins.. or at least that is my hope!   Tonight I thought I would try sleep without Ativan, as it certainly wasn't helping me sleep.  Sadly, it was another loss-leader for sleep, not falling asleep until around 5am, when I took an Ativan. I think I'll try a gravol for tonight.

Infusion Day #4 - June 1/12
My beat-up arm is happy to be free of the IV. Now if I can only get some sleep tonight!  It is actually much more bruised than looks in the picture.  Apparently I'm a good "bleeder". hehehe
I feel so very disoriented.  I can't follow conversations well.. More than two concepts are introduced into one sentence and I'm lost.  Freaky feeling. I am attributing it to having not slept for days and this solumedrol pouring through my being.  Dizziness is a common side-effect, but I'm sure Kirk will argue that is part of who I am anyway.  I am going to try to forego the Ativan today and try plain ole' Gravol, and see if that does the trick.

Thanks all for your prayers and offers of help during this time.

My father-in-law emailed me a devotional today, which I found very fitting to where our lives seem to reside lately, so I felt I should post it below.  

Posted: 31 May 2012 10:05 PM PDT
by Charles R. Swindoll
God is our refuge and strength,
A very present help in trouble.
Therefore we will not fear, though the earth should change
And though the mountains slip into the heart of the sea;
Though its waters roar and foam,
Though the mountains quake at its swelling pride. Selah. . . .
The LORD of hosts is with us;
The God of Jacob is our stronghold. Selah. . . .
"Cease striving and know that I am God."
—Psalm 46:1–3, 7, 10
Quiet our hearts, dear Father, and in so doing, remind us that You are sovereign—not almost sovereign but altogether sovereign. Nothing occurs in our lives that has not been masterfully planned and put together by You, our eternal God. Help us to enter into the truth of Psalm 46:10 personally and consistently. May that result in being still, enabling us to discover that You are God. As we cast our cares upon You, knowing You care for us, release our stress.
We entrust our concerns to You today . . . large and small, new and nagging. We long to experience peace-filled living by stepping off this treadmill called pressurized living. We pray that Your mighty presence would take the place of the stress, the demands, the struggles, the mess we've created. We ask that You would give us Your shalom—Your peace—like we've never known it before. We deliberately choose to trust You and to rest in You.
In the name of Jesus. Amen.

See also Psalm 34:4; Proverbs 16:3; Jeremiah 17:7; Philippians 4:19.

Excerpted from The Prayers of Charles R. Swindoll, Volume 2, Copyright © 2012 by Charles R. Swindoll, Inc. All rights reserved worldwide.