Ohhhhhhh myyyyyyyyyy gossssssshhhhhhhhh……I was expecting a small box for the delivery of my insulin pump. Instead, it was a heavy box. Most of the weight was manuals and quick guides and log books, but there were also unfamiliar looking parts and pieces.
Right out of the box…boxes of components and stack of workbooks.
Lots of heavy paper. The Revel manual is 244 pages 😮
It looks a little less daunting with just the necessities. But…once I start using the insulin pump and continuous glucose monitor, I need to have this and more with me at all times. There will also be tubing and insulin and???
Yesterday was a good example of why I need a pump. I shot up enormous amounts of insulin and it made no difference. It was the combo of steroids, my mystery infection and a horrible gastroparesis day. It took at least 12 hours for my blood sugar to decrease, and then it plummeted. I had to eat some sweets to make it come up 🙂 Some days it’s easy to just eat and shoot up the right amounts of two insulins. Other days, carb counting and my sliding scale are useless. No predictability whatsoever.
I am supposed to read massive amounts of info and complete workbooks or online classes before the diabetes educator teaches me how to use all these gadgets. My attention span is very short. I have incredibly distracting double and blurry vision. When I wrote down the dates for my next week of blood sugar testing, it looked like I was writing double lines. Usually the second image is fainter than the real one. Not today!
The manager came to my window to ask how the mold is now. My voice immediately got broken and my left eyelid slammed shut. It isn’t taking me much to go towards MG crisis. My throat keeps catching and my diaphragm forgets to work. Oh! When the FEDEX guy knocked, I toddled over with my walker and opened the door. Suddenly there were about eight of him and I was soooooooo close to fainting! As usual, it must be obvious to others. He was quite concerned….wanted me to sit down, drink water, get help, etc. I gave him my lopsided smile and said I am always dizzy. I just wanted him to keep going. Instead, he was asking the same questions over and over with rising alarm. Sigh….I thought FEDEX guys were in a hurry? It’s sweet of him to care, though. If only there was something to help! Too bad he wasn’t delivering IVIg 🙂
I’ve often wondered if I have congenital MG. My mother and grandmother had things wrong similar to me. Lots of people from my maternal grandmother’s family had droopy eyes. I have 5 variations of CHAT, good repute for CHRNE, 1 for COLQ, 1 DOK7 variation, no GFPT1 and no RAPSN. Those are the ones listed in the above study.
I also have CHRNA1, 2 variations of CHRNB1, 3 variations of COL13A1, 2 variations of DPAGT1, one LRP4, 3 MUSK variations of good repute, one PLEC variation, 2 variations of SLC25A1 and 8 variations of SNAP25. Those genes can be related to CMG, the other genes listed in the article, I don’t have. I wish there was someone who could interpret my DNA data.
When I was going to the University of Montana, I was diagnosed with exercise-induced asthma. I have thought many times, in retrospect, that it was actually MG. Not only does my breathing get better with albuterol, I get stronger. In the 70’s, there was some sort of pill for asthma that made me able to easily climb the Rocky Mountains. It was taken off the market, which changed my life for the worst. These are CMG clues. One thing that does not fit is that steroids help. I guess they are not supposed to be effective for CMG.
I think it’s crummy that it’s obvious that I have myasthenia gravis, most docs agree I have MG, but I am in diagnostic limbo. Why do I have to be seronegative? 10 to 20 % of MG folks are seronegative. My VT and FL MDA docs were not phased by that, neither were most other neuros.
Mestinon only works for MG or for nerve gas exposure. “Pyridostigmine is used to treat the symptoms of myasthenia gravis. It is also used in military personnel who have been exposed to nerve gas.” I am tired of being yanked to and fro. Every doc in Utah, except the neuros at the U say I have generalized MG. Even their own insurance company agrees I have MG…at the same time they deny IVIg.
I guess I’m feeling persecuted today. Seems stupid. No one has tried to deny I have MG for the last year. I’m just pissed off that my medical life is not easier. I’m grateful that I still get the right meds for it. Way too many women in online support groups are denied even that.
I don’t want to have anything wrong with me. I want to wake up and be the Wendy who used to go backpacking and downhill skiing and spelunking and white water rafting! I think the 2 power wheelchairs in my living room, the oxygen concentrator and CPAP in the bedroom, the big box with insulin pump & supplies next to me and the shelf of insulin in the fridge ganged up to depress me 😦 It must be one of those days I need to deal with the stages of grief. I know there is no going back. There is only adapting to old age and even worse disability.
To balance that out, here are some funnies 🙂