Just a short update tonight.....
I'm truly overwhelmed at each of your concerns for me. I just got home tonight and online after being admitted to the hospital for 4 days. My choices given to me by the attending neuro, after filling me with 3 days of IV Solumedrol, were 1) hire a caregiver 24/7 to assist you with your chair transfers (which is what landed me in the hospital Wednesday night after I took 2 bad falls - as I can no longer stand) and help you with your daily chores, or 2) you have to go to a nursing home for the next 6 weeks.
Well, option #2 was out of the question, so I hired a caregiver to live with me (I'm sooooooooo NOT happy about that because now I have no privacy to speak of, plus it's costing me a small fortune as Kaiser Sr. Advantage doesn't cover live-in care, etc.) BUT it's better than the alternative.
Now do all of you understand the phrase "TIME IS BRAIN"??? All this time without Tysabri, MS is creating MORE lesions on my brain, and this time, it's taken away my ability to even stand. I don't even know if I'll still be eligible for it now, and the neuros in So. Calif Kaiser won't be "TOUCH" Certified until mid-October.
I can't type long as this is my first night home, and I'm not feeling all that great...more disappointed than anyone, at the system.
Thank you one and all for your concern. I have a TON of emails to answer, and I probably won't get to half, but once again, thank you all. I'm not giving up, and neither should any of you!
(((hugs)))
Love, Lauren
A very proud member of www.MSpatientsforchoice.org/
I'm truly overwhelmed at each of your concerns for me. I just got home tonight and online after being admitted to the hospital for 4 days. My choices given to me by the attending neuro, after filling me with 3 days of IV Solumedrol, were 1) hire a caregiver 24/7 to assist you with your chair transfers (which is what landed me in the hospital Wednesday night after I took 2 bad falls - as I can no longer stand) and help you with your daily chores, or 2) you have to go to a nursing home for the next 6 weeks.
Well, option #2 was out of the question, so I hired a caregiver to live with me (I'm sooooooooo NOT happy about that because now I have no privacy to speak of, plus it's costing me a small fortune as Kaiser Sr. Advantage doesn't cover live-in care, etc.) BUT it's better than the alternative.
Now do all of you understand the phrase "TIME IS BRAIN"??? All this time without Tysabri, MS is creating MORE lesions on my brain, and this time, it's taken away my ability to even stand. I don't even know if I'll still be eligible for it now, and the neuros in So. Calif Kaiser won't be "TOUCH" Certified until mid-October.
I can't type long as this is my first night home, and I'm not feeling all that great...more disappointed than anyone, at the system.
Thank you one and all for your concern. I have a TON of emails to answer, and I probably won't get to half, but once again, thank you all. I'm not giving up, and neither should any of you!
(((hugs)))
Love, Lauren
A very proud member of www.MSpatientsforchoice.org/
posted by Lauren @ 1:52 AM
2 Comments:
At 4:57 AM,
mdmhvonpa said…
Simply awful. I'm sad to hear you have fallen on hard times. I would normally fall back on family but myself being married and all would probably request an assist just for the day-time hours to make the pressure less on the Mrs and Twins. From what I hear, MS is an issue in the beginning but after it has 'settled in' and done all the damage it can do ... the flare-ups tend to decrease in frequency (10-15 years later). Well, that is what my neuro told me but I would get a second opinion.
At 2:09 PM,
Anonymous said…
Lauren, I'm so sorry to hear your news. I hope you weren't hurt when you fell. I can only imagine how frustrated you must be.
How do you pick a caregiver on such short notice? Good grief! Your determination is inspirational.
Penny
Post a Comment
<< Home