I am having another night where my brain is just racing. The doctors warned me again that doing a steroid infusion does cause this wired and jittery feeling and "that you just want to literally run home & clean your whole house" (but since my awesome best friend from college, Sheri, had worked sooo hard at cleaning almost everything spotless especially our bedroom area, I was totally peaceful letting that part go :-) but my mind and body are going a mile a minute about everything else :-) ). They even gave me additional sleeping pills (Ambien) to take along with my other sleeping pills. I did fall asleep right away (the world was initially moving taking so many sleeping pills :-)) but I'm now WIDE awake and I'm sitting here drinking my warm milk with some chocolate (hopefully, that will help). The steroid infusion is like having a month's worth of steroids in one time - so it is pretty powerful. They said this infusion should last me until the 4th week of July. I am also on steroid pills so I think the combo is a lot for my body. They are starting to taper the steroid pills to help my body (I guess your body gets addicted to steroids). Please pray that this last infusion will be successful and "kill/pop" all the remaining antibodies. Please also pray that my body continues to heal and that I go into remission and STAY there. My one doctor said that she had been on steroids last week for only 6 days and that it made her cranky. I feel like I have had really no bad side effects from being on steroids so long, the only notable ones is that my face turned round and my forearms swelled. Please pray that I have no other side effects from being on Steroids and Methotrexate for this length of time. As the doctors have said, it is a fine balance of giving the right meds to do what they need to do but not hurt my body. The doctors said that they want me to take this next month to "heal my body" (convalescing/recuperating) before I start PT. Please pray that I am able to not do anything that would hurt my body since it is tempting to now that I am getting my energy back. Please also pray that my range of motion starts to improve. The doctor gave me two stretches that she would like me to do daily (she ordered me not to do any exercising - as you all know, that will really not be difficult for me to follow :-) ). They want me to stay away from anything that could cause any more inflammation in my muscles (I can't even have back rubs, which Jack told me that since he hates to give back rubs this is a doctor's order he plans to follow for the rest of our marriage :-) ). Every day my muscles seem to be getting weaker (especially my upper body) and my range of motion worse. The doctors said that this will ALL improve once I start PT - thank the Lord!!! There may be some permenant damage to some of my muscles due to the severity of the attacks, but we will find out after PT. This seems so minor, I just can't wait to get my range of motion and strength back.
I also have a HUGE thank you to one of Nana's close group of friends. They love Nana so much that they tried to think of a special and unique way to help me long distance. So they sent their love and care all the way from CA by giving us some money for a cleaning lady. Since I can't push a vacuum yet they thought I could hire someone using this VERY generous gift of money while I was healing and gaining my strength back. I've never had a cleaning lady (well, a "real" one :-) except for all my wonderful friends that helped clean our house from vacuuming to bathrooms during this time) so it will be such a blessing especially since we are home now almost everyday except for all the doctor appts. Thanks for such a thoughtful gift.
Thank you so much Cheryl and Ron Vis for watching all the kids from our church date night group for us this Sat. (although these kids are SO much FUN together it is still a HUGE sacrifice to give up your date night and watch ALL the "very active & into everything" :-) kids instead.) All the kids were supposed to be here but the Vis family (along the other parents) decided to bless us by taking our place in the rotation. Thank you so much to each of you - you are all such a gift from God and we love being part of this group.
I could keep writing for a long time thanking people but it still hurts to type so I am going to try reading now.
Love you,
Michelle
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