Sorry it has been so quiet here, I just really needed a time out. I have had a very full week, some good, some bad. Sunday I almost ended up in the hospital when my whole body stopped working. I was sitting on the couch with my 4 year old and everything gave out. My legs wouldn't move, my arms wouldn't move, my head slumped backward, and when I tried to speak my tongue fell back towards my throat. My husband knew the drill and put a mestinon under my tongue, he had to hold my body and support my head so it would stay in my mouth. I came around after a long and scary 20 minutes or so and he watched me like a hawk. Monday I had a doctor's appointment and while I was quite exhausted I was no where near as bad as I was on Sunday.
So the doctor's appointment could take up a whole blog but I will focus on the nitty gritty. while I was there my arms, hands, and feet did something that has been happening off and on for the past 6 months. I now have confirmed Raynauds (where your fingers and toes turn white upon the slightest exposure to cold, then when they warm up they turn this freakish blue/purple color. This is pretty common and as long as I keep my hands and feet warm I don't have to worry about losing my fingers and toes. The more frustrating and frightening part of the appointment was when he saw my arms. He called it Livedo Reticularis and said it is linked with 3 autoimmune diseases, none of which is MG...of course. So I see my neuro next week and am supposed to discuss it with him. I am freaked out that I have another disease on top of this and that my meds have been masking the symptoms. Though I look for blessings in everything and the blessing in this is that if I do have another AI I have been receiving treatment for it since it started and it would also explain why my MG has not been responding to treatment as well as we had hoped.
Wednesday was wonderful, I woke up feeling awful and was so weak, stressed, and tired that I just could not work. So I called in and while I was resting my Grandma called and offered to pick me up. What a wonderful relief. I had a day of quiet rest in my Grandma's loving home. No kids asking for food or attention, no husband asking where this is or that is or can I make a phone call for him, no computer tempting me to work. I just relaxed and recharged...ahhh.
I am feeling much better today. We went to my in-laws this evening and the kids played in the pool. I sat on the edge and soaked my feet and enjoyed the sun and fresh air. I am so excited for the long weekend, I hope my health allows me to enjoy it. I think that about sums it up.