Anxiously awaiting Friday...

My body is telling me it is time for my next treatment. It took 2 hours to get out of bed this morning. Do you have any idea how insanely irritating it is to start your day off not being able to lift your arm to turn off the alarm, knowing you have to get up to work, no one is in the house, and you have to pee? I wish I could say today was the only day but sadly, no this has become at least a once a week occurance.

I did get on the computer by 8:30 and kept my sheets dry so that was a major feat in and of itself - Ha! You gotta laugh at yourself right?

So update on the exercise bike...I got a hesitant, tentative okay. I had to promise to only do the lightest setting for 5 minutes every other day the first week, then bump it up by 5 minutes and follow the same routine the next week etc... If I felt, weak, dizzy, or anything else I am to stop and start back at a lower setting/shorter duration or just not do it that day.

On Monday I did my 5 minutes, I cheated and did it again in the evening and think I kicked major toxins that were locked in my muscles into the blood stream because the headache I experienced was of monumental proportions. Thank you Lord for making the maker of Imitrex!

In fun news, Pat is working on a video game project for his digital design class and had John and Cindy help him. I put a couple pics up for your viewing enjoyment...

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.