Teetering on another exacerbation

Well, the week hasn't gotten any better. Imagine if everything you saw looked like the picture above. That is what happens to me when my vision gets bad. This time it was even worse. I had to take off Thursday and Friday due to extreme weakness in my legs, severe vision issues (I can't even call it double vision it looked like I was trying to focus through vaseline coated glasses), and shortness of breath. My neurologist was out of town so the team of residents and the IVIG nurse reviewed my file and came up with a "keep Jen out of the hospital for the weekend" plan. My mestinon has been increased from 60mg every 4 hours to alternating 60/30mg every 2 hours. This has helped a little bit but a little bit at best. I fear the next step is either increase the predinsone or add another day of IVIG each month. I don't want to do either. The prednisone will make me a hairy, fat, emotional wreck, and the extra IVIG will take up a third whole day each month. I am supposed to hear back from the neuro tomorrow to see how I am doing and find out the plan moving forward. I was told that the temperature changes in the spring and fall can have a major affect on myasthenics. I hope that is the case and in a few weeks things will calm down again. I'm praying as I am really sick of being such a burden on family. Well that is all I can type for now. I am still exhausted.

Why it is important to follow protocol

From Tuesday, March 23rd (Accidently saved as a draft)-
Today, I sit in the dark with my sunglasses on, trying to get through the day with a raging migraine. It is completely my fault because I didn't follow protocol for my IVIG. Things had been going so well that I didn't take each dose of benedryl, and while I took the tylenol during the treatment I didn't continue for 24 hours, then the real naughty part...I did not adequetly hydrate. All of the above resulted in a mild allergic reaction on Saturday night, itching, swelling, fun, fun, fun...and then a headache Sunday and Monday followed by a Migraine today. It is one of those migraines that feels like there is a bear trap, a rusty one, clamped down on your brain just twisting and pulsing. I am trying to hydrate but being so far behind the 8 ball has done me zero favors.

I am also having increased difficulty breathing. This hasn't happened in awhile and is totally freaking me out - I do NOT want to go to hotel Spectrum Hospital for another extended stay. I had a Pulmonary Function Test at my new pulmonologist and hopefully the test just fatigued me and this will pass...we'll see. My MVV (maximum voluntary ventilation) numbers came up 20 points but are still 40 points below where they should be. This was the first thing back at the end of the summer that clued the specialists into the fact that my disease was neuromuscular in origin. I am happy that the number is up but the pulmonologist said we really need to get it higher. My Maximum inspiratory and expiratory pressures each went down 5 and 6 points respectively. This is the measure of diaphragm strength so this is extra discouraging. My pulmo is going to consult with my neuro to see the best way to strengthen my diaphragm without causing further weakness. The problem with myasthenia is that the area being attacked can actually get worse with physical therapy if you do too much. It is like shining a flash light on it. If my body things my neuromuscular transmission is a virus, then the muscles being worked get attacked. Oy! You can win for trying. I am going to rest and try to get stronger.

Silence is bliss...

So I have been silent for a few days and it didn't go unnoticed. It is a good thing. I think my new treatment and outlook are helping with my overall health. I also went from 5-6 hours a day working from home to 8 hours a day and I am tolerating it quite well. I still have my weak moments but comparitively less than last month. I think it also helps that the weather is changing. We had 6 straight days of sun and it was warm enough to open the windows. My bulb plants are sprouting too and that always gives me warm fuzzies. It means that Easter is on the way, I'm glad Cindy has gotten over her fear of bunny rabbits.

For an MG update I have had longer periods of strength daily. My worst moments are in the early morning and in the evening. I have a little bit of eye weakness but not enough for full on double vision most of the time and I am walking less like a drunken sailor and more like an elderly shuffler so that is an improvement. I spent the last two days sanitizing everything before I touch it because Cindy has a monster bug and I am terrified that I will catch it but I have felt pretty darn good...knock on wood.

The fear lies in what I know happens with my illness when I have a bug I go downhill fast, the last two times ending in multi-day hospital stays and all the warnings on my Imuran prescription. If I followed that I would live in a bubble so that is a bit freaky. The trick with these autoimmune disorders is to supress the sick, confused immune system without allowing real germ enemys from laying seed during the supression...hopefully I won't have anything to report in that arena.

That is about it for now. I am thankful that things are starting to return to some semblance of our "normal." We arent there yet but we are certainly on the road... I will try to commit to posting more regularly, it is just hard with the return of life, and that is a good thing.

TTFN

Great Day!

This morning I awoke with more vim and vigor than I have in the past year. Most mornings I feel as though I am walking through wet cement in the middle of thick swamp fog. I think it is a combination of this commitment to giving and the modification to my treatment. Whatever it is...I LIKE it:)



Last year, before my illness hit me, I was working out in the gym at least 3 times a week and was like the energizer bunny mom. Many things have changed for my kids, ages 3 and 10 but most of all just the mom they knew. I know it is scary for them to have seen me in the hospital so many times. They have been so brave and loving through this all but since I was feeling so well, I wanted today to be about them. Today I give with a child's heart, today I give with a child's heart, today I give with a child's heart.



What I did for my kids today:

1. I let my oldest stay home from school and bought him a new video game.

2. I took the kids to Toys R Us and Taco Bell for lunch (we have been eating very healthy at home lately so this was a huge treat).

3. We added on $2 to our bill to support Autism research and the kids each received a sticker to proudly wear.

4. I let them pull out all of the really loud games and played with them, you know Whac-A-Mole, Hungry-Hungry-Hippo, I even let them jump on and pop the bubble wrap.

5. We had a dance party in the living room.

6. We had dinner on a blanket on the living room floor and called it a picnic. I let them pick what they wanted for dinner so we had Steak, Crab Legs with Butter, French Fries, Broccoli, and M&M's and Rolo's for Desert.

7. We ordered a movie on TV and stayed up past bed time cuddling on the couch with a big sleeping bag and a bowl of popcorn.

8. I spent extra time reading and praying with each of my children and sent them off for a long night of sweet comfortable dreams.



What a great day, I got to be a kid again too! May all of you enjoy the peace and joy of blissful innocence.



Jen

I have been slacking...

Sorry I haven't posted in awhile. It has been quite the week. I had my four hour drive across Michigan on Tuesday. Thankfully the roads were clear and it was sunny, I am also thankful that the patient before me was late and I was early so Dr. Teener spent twice the amount of time he usually does with me. I was wiped out on Wednesday and on Thursday had my IVIG with 250mg of Solumedrol. Which is liquid Methylprednisolone. Dr. Teener didn't want to increase my daily pred dose but wasn't thinking I'm quite where I should be ideally (a.k.a. the "normal" that is posted in the neurology textbooks). We have also added to my pharmaceutical cocktail the drug Imuran. Imuran is an anti-rejection drug given to organ transplant recipients and many sufferers of auto-immune disorders. I started that Wednesday night and had some indigestion - common side effect but man oh man - Thursday morning was brutal...

I woke up and could only open my left eye slightly, I went to stand up and fell, I climbed up onto my walker seat and shuffle stepped it to my daughter's room where I was too weak to open her bedroom door. I ended up in a pathetic looking ball until my Mestinon kicked in and nurse wonderful arrived with the IVIG. I am happy to say I feel like a new woman today so hopefully things will continue to progress. The Imuran takes 6-12 months to work in which time (if it works) we will phase out the Solumedrol and hopefully the IVIG....Happy weekend everyone!
Jen