back from hospital; lots of changes needed
Ok, so I couldn't get ahold of my neurologist all (last) week, and ended up speaking to the on-call neuro at Geisinger last Friday. His advice? Go to the ER; to the hospital ER where I'd be admitted. I groaned. 
He heard it, but told me that my description of my sx included a progression of loss of mobility. It was the best thing to do.
So...we asked a couple of friends (who admonished us last time to call them if it happened again), and my kids got to have sleepovers with their best friends. Much better than hanging out at the ER.
I'd already pleaded earlier in the day with my dh to cancel his planned trip to NJ with my son. He'd been very good about cancelling those plans, as well as helping me to coordinate a trip to the ER with possible admission. 
Yup; they admitted me around 1:00 am Saturday. Glad the kids were not there. Improvement? The new ER here has private rooms with sliding glass doors AND curtains. Made things a lot easier and more private.
After 3 days of 1 G. of IV steroids (and a neuro who "didn't do weekends"
finally showing up on Monday), I was sent home with "no restrictions" and "fall precautions." I still had leftover Prednisone from my LAST visit, so the local neuro said I could just use that. Tapering down every third day (down from 80 mg. to 70 now).
I have a follow-up appt. with my neuro's nurse (best I could do) for Tuesday, Aug. 31. I'm concerned b/c this is the 3rd flare since last September. My neuro had already started saying that I may need to switch to another DMD.
My dd was telling me just the other night (after I'd returned home) that she was scared I was going to die. I assured her that it was not common; not an automatic "death sentence." Finally googled "Can you die from Multiple Sclerosis?" for her and printed off the part she needed to read; that most people with MS usually die from the same things that other people do and that death from MS is rare.
I'm SO GLAD that my kids are going to MS Kids' Camp this upcoming weekend!! That answer that I printed helped, but I am thankful that God's timing is so perfect; the kids' camp is right after my recent flare/hospital stay. Not that I wanted to have a flare AT ALL, but the timing of it will, now, make the kids' camp all that more important and helpful for both of my kids.
Now, I've got to get busy looking into some home health care possibilities given to me by the social workers there. Recommended: a stair glide (unfortunately, the nearest place who sells them says NO insurance covers them; so looking into a local CIL organization today); raised toilet (already have, but took it off b/c my dh wouldn't use our master bath with that; it's going back on); home health care services (have one I'm going to call today); physical therapy ( I've used up 13 of my 20 allotted days and will be scheduled for one to evaluate me for a scooter).
Prayers are welcome! Still not moving well, but the myoclonic jerks (that HAD been under control before the flare) and the majority of the nerve pain is much improved. It's mostly the fatigue, side effects of prednisone, and mobility issues/weakness that are still a big problem.
Also, contacted the college where I was GOING to teach one class this fall, and told them I can't do it. They've been great about it; saying they will keep me on the approved adjunct list and will send me the proper paper work for a "leave of absence." Both contacts were very kind and said they hoped I'd improve soon; not to worry about not teaching this fall. Finally, I can just focus on getting better; for myself and for my family.
He heard it, but told me that my description of my sx included a progression of loss of mobility. It was the best thing to do.So...we asked a couple of friends (who admonished us last time to call them if it happened again), and my kids got to have sleepovers with their best friends. Much better than hanging out at the ER.
I'd already pleaded earlier in the day with my dh to cancel his planned trip to NJ with my son. He'd been very good about cancelling those plans, as well as helping me to coordinate a trip to the ER with possible admission. Yup; they admitted me around 1:00 am Saturday. Glad the kids were not there. Improvement? The new ER here has private rooms with sliding glass doors AND curtains. Made things a lot easier and more private.
After 3 days of 1 G. of IV steroids (and a neuro who "didn't do weekends"
finally showing up on Monday), I was sent home with "no restrictions" and "fall precautions." I still had leftover Prednisone from my LAST visit, so the local neuro said I could just use that. Tapering down every third day (down from 80 mg. to 70 now). I have a follow-up appt. with my neuro's nurse (best I could do) for Tuesday, Aug. 31. I'm concerned b/c this is the 3rd flare since last September. My neuro had already started saying that I may need to switch to another DMD.
My dd was telling me just the other night (after I'd returned home) that she was scared I was going to die. I assured her that it was not common; not an automatic "death sentence." Finally googled "Can you die from Multiple Sclerosis?" for her and printed off the part she needed to read; that most people with MS usually die from the same things that other people do and that death from MS is rare.
I'm SO GLAD that my kids are going to MS Kids' Camp this upcoming weekend!!
That answer that I printed helped, but I am thankful that God's timing is so perfect; the kids' camp is right after my recent flare/hospital stay. Not that I wanted to have a flare AT ALL, but the timing of it will, now, make the kids' camp all that more important and helpful for both of my kids. Now, I've got to get busy looking into some home health care possibilities given to me by the social workers there. Recommended: a stair glide (unfortunately, the nearest place who sells them says NO insurance covers them; so looking into a local CIL organization today); raised toilet (already have, but took it off b/c my dh wouldn't use our master bath with that; it's going back on); home health care services (have one I'm going to call today); physical therapy (
I've used up 13 of my 20 allotted days and will be scheduled for one to evaluate me for a scooter).Prayers are welcome! Still not moving well, but the myoclonic jerks (that HAD been under control before the flare) and the majority of the nerve pain is much improved. It's mostly the fatigue, side effects of prednisone, and mobility issues/weakness that are still a big problem.
Also, contacted the college where I was GOING to teach one class this fall, and told them I can't do it. They've been great about it; saying they will keep me on the approved adjunct list and will send me the proper paper work for a "leave of absence." Both contacts were very kind and said they hoped I'd improve soon; not to worry about not teaching this fall. Finally, I can just focus on getting better; for myself and for my family.
Sir Falls-a-lot
You haven't seen what a mess I am on this Prednisone! 
Comment