Wunderground says our temperature got up to 107 degrees. I hadn’t realized it was going to get that hot…..I thought 90’s. It feels hotter at 8:30 PM than it did all day. That’s because it’s raining. In this heat, the water went straight to humidity. It rarely feels humid here in the desert. I forgot how uncomfortable that is.

I have to admit, I am glad the rain came through. It broke up the party, except for 2 hard core alcoholics sitting out in the screenhouse. Much quieter now 🙂

Besides the partying and the derelict guy out my window, another thing that has been plaguing me the last couple of nights is the trochanteric bursitis. When I lie on my side and feel the top of my leg where it moves in the hip, it’s very swollen, with a humongous pouch of fluid at the pointiest part of my leg/hip. When I try to massage away the leg cramps there, I am exquisitely tender and it makes me cry.

Ibuprofen quit touching the pain. A couple of weeks ago, I only took one Valium each night for 2 days. Today I gave up and took another Valium. Now my MG is mad. I feel like I weigh a bazillion pounds and several elephants have made themselves comfortable on my chest. But….I can feel my hip pain losing its grip. It’s worth it. I HAVE TO get some sleep. I hate Valium, but I need it tonight.

My jaw line is swollen on both sides, but the left side is owier. Why do so many things hurt? My joints are stiff and sore, My neck does not want to hold up my head. My butt cheek still hurts. Those muscles are in knots.

I went to bed before it was all the way dark. I woke up at 12:30 AM after writhing around for a time. Suddenly it was as if every pore on my body had a spigot that was turned on full blast. Sweat was pouring out of me. That woke me up for real. I was in way too much pain to fall back asleep.

I got up to take Mestinon, Motrin and a Valium. This is my first time ever to take 2 Valiums in one night. I am going to sit up until it kicks in. This is the worst leg/hip/spine pain I have had yet. And it goes along with swollen lymphs in my groin. It hurts sooooooo bad! Since this is the third night of not sleeping, I am feeling kind of crazy. I cannot imagine going through the stuff I do, then getting up in the morning to take care of kids or go to a job. Many women in my support groups have much more complex lives than I do. I feel bad for them.

Another thing I feel bad about are meds. When I lived in Arizona, everything needed preauthorization. It took a long time to get my Mestinon Timespan authorized. I had to buy a few pills and they were $5 each. While I was looking that up, I found my last prescription for Cellcept. It was February 2012. My neuro said I had MS. How could I forget that?

Well…lots of neuros have thought I have MS. The neuro I have now says an MS variant and/or CIDP, besides the MG. I take it seriously for a few days, roll my eyes and then pretty much forget. Makes me wonder how much I forget?

Ooops! I was talking about meds. The cost of Mestinon has been going up exponentially the last few months. A month or 2 ago, the retail price for my monthly needs was $3000. A couple of women wrote this week that their Mestinon Timespan has gone up to $5000/month 😮 People with myasthenia gravis generally can’t live without Mestinon. It wasn’t all that long ago a bottle was $80. Now it can be $1250! This is not a new med and I doubt it’s expensive to make.

Specialty meds are increasing at an astronomical rate. People with MG in the US are talking about the need to sell their houses in order to buy meds. Yet the women in England say it costs just over 8 pounds to buy the same med there. That’s about $12.70 in dollars. That’s just nuts! Geeze, I had better quit getting worked up so I can go back to sleep.

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