So . . . .things have just basically gone to hell in the last week especially. The insurance company declined paying for the Rituxan, and has now declined an expedited appeal, so I have to wait another month to see what they will do about that, but it doesn't look good. I have been VERY lucky because the staff and my physician at pharesis have really been fighting for me to get this treatment and have gone way above and beyond the call of duty. They have even managed to get my neuro to write some things to the insurance company, after some kicking and screaming. The insurance company also told my neurologist that they may dispute my diagnosis, I assume because I'm sero-negative and my EMG was normal, so the neuro is talking about doing the electro-physical tests again and God knows what other tests to try to provide more evidence for my dx. I'll see him next week to find out what all I'll have to do. I assume it will be the nightmare of two years ago when I was spending every week for literally months at the doctor having all of these miserable tests done to get an initial diagnosis. I'm terrified that while all of this is going on that the insurance company will refuse to pay for any treatments and with my breathing problems I could easily end up in the ICU or even dead, since I live alone except on Saturday nights when my roommate is here, and would have no one but myself to take action if I started to go into respiratory arrest. And even if they pay I'm afraid I'm going to have to start doing the plasma pharesis twice a week because I'm getting weaker. But when I do it twice a week I'm so tired from it I have a hard time working, and I also become anemic.

Meanwhile, I went to the pulmonologist yesterday and she confirmed for me that my muscle strength in my diaphragm and intercostal muscles is indeed steadily declining, just as I suspected. My MIPS was OK, but my MEPS was only 43% of normal--compared to a year ago when it was about 60% of normal. And my asthma is also starting to get a bit worse, although fortunately not too bad. She upped the dose on my inhaler and told me to use my rescue inhaler more often. The problem with the inhalers, especially the albuterol based ones, is that they make me sometimes feel anxious and/or like I'm coming out my skin and that makes it very hard for me to sit still and concentrate when I'm working. She wants to get me a BiPap in the hopes that it will give my muscles a break at night and that I'll sleep better and feel more rested, and perhaps have fewer breathing problems during the day if the muscles don't have to work so hard at night. And I assume that perhaps she's also hoping it may slow the decline of my strength. Because right now I don't sleep well at all and I am tired EVERY single minute of every single day. I've always had bad insomnia, but the pulmo thinks that even when I'm sleeping I'm not getting good rest because my body is having to work to breathe. But since I don't actually have apnea the insurance will probably decline to pay for that as well. If they'll pay I'm willing to try it, but it just feels like one more time and energy consuming thing I'll have to deal with. If I get it I may have to spend a night in the hospital, and I'll have to attend multiple appointments to fit it, learn to use it and have follow up on how it's working. I'll be waiting to hear back from her office about whether I'm going to get the machine or not and I'll see her again in six weeks.

In the meantime, I'm trying to keep working my same schedule, do all the housework and other chores and errands, and now fit in somewhere the multiple doctor's and testing and treatment appointments. I feel like my job could be in jeapardy because I'm having to miss work for these appointments. And I'm just SO tired and the weakness is getting worse and I'm really afraid I'm just not going to be able to keep going like this. I'm afraid I'm not going to be able to keep all of these balls in the air and if I can't my world is going to come crashing down around me. I feel like a mouse in a wheel--I run and run trying to deal with this disease and keep working and try to have some kind of life besides, I use up all of my energy, and I end up right where I started. I'm sorry to whine--I know many of you are worse off than I am, but I feel so very discouraged, frightened, and alone right now. I guess I just needed to tell some people who have some understanding of what I'm going through, since no one I know gets it at all. I'm just so very exhausted, and I just don't know if I can keep doing this. . . .

Thanks for listening.
MK