Well, those of you who know me are aware that big changes have been happening in my life. First, at about the same exact time I started a new job working from home, I had my first appointment with my neuro at U of M since my surgery. At that time I had been off work for 9 months and had 3 months under my belt since my surgery. I was feeling better than I had in a long time. I still struggled with daily weakness but the length and severeity was reduced and I hadn't had a breathing crisis in months. Compared to an average of 4 times a year that is a milestone.
At any rate, my neuro decided to space my IVIG to every 10 days and reduce my predinsone as well. I thought !wonderful! but was foolish in not taking into account what a life changer working 40 hours a week was going to be. I thought "hey, you used to carry an oxygen tank and had no meds, you can certainly work from home feeling as good as you do now" Well I am a bullheaded 10% Sicilian and if I set my mind to something that is that:)
It took about 60 days and me dragging my foot, slurring my speech, tired as all get out to end up in the hospital with a full fledged crisis. For those of you who don't know what a myasthenic crisis is, it is when the muscles used for breathing and swallowing are too weak to work. I was aspirating on my own saliva and could not catch my breath. My husband saved my life because it all happened while I was sleeping. Not a good way to start the day.
Of course when I was feeling stronger and could speak my doctor's at the hospital asked what I thought set off the crisis. I said...must be the heat, and we had some car trouble, and my meds have changed. Not once did I admit that I was not strong enough to make it through a full workday...that would go against my very nature. In my head I am superwoman but in my body I am gumby...or Mr. Bill, depends on the day!
So I tried to go right back to work but that was stupid, I was seeing double and sounded like a drunk sailor. I ended up taking a week off to rest and felt better. I was back on all of two weeks when the same thing happened. BAM! In my sleep, couldn't breathe, Pat waking me up by shaking me and telling me to breathe.
This time I have to say I saw it coming. Every day by six I had a hard time catching my breath, talking, reading, thinking. By eight pm (the time my shift ends) I felt like I had sand bags on my shoulders and as if I were walking through quicksand. I called my neuro and asked if I could go back to weekly IVIG but he wanted to try upping the prednisone first. I did that but obviously it was not enough. I ended up in Club Med a 2nd time.
I have to say in all the years since diagnosis, I have always had crises during my waking hours and could always see them coming. Of course I now know I let it get too far and lost how in tune I was with my symptoms. So, I will now be back on the weekly IVIG and the higher prednisone dose until I see my neuro in October. My local neuro will see me next week to go over what happened and discuss my work situation.
So here I sit, contemplating what is the best thing to do. If anyone has the magic answer I would love to hear it. Currently I am back from a week off and am putting in 1/2 days. I really want to work but I know that want is not always should. I tow a fine line between doing too much and doing so little I start to go bonkers so if you have any pearls of wisdom please keep that in mind. I am giving it the third round of the old college try but I want to be here for my kids and what I was doing before put that in jeapordy...jen...signing out for now!