Is it possible for you to put your name on that list just as quickly as possible? January, February, and then the next thing you know, you are there in March! I know that that is not ideal, but.. can that possibly work? Either way, not getting in this time has to be hard. You were so looking forward to it too!



-Spike-

I've been on the list since SEPTEMBER. I cannot continue like this. I can barely make it to the bathroom and back and none of my 7 doctors give a hoot. I have to completely 100% give up my nursing degree now. No chance of rehab in time, even with an extension. I will not be able to pay my property taxes without being able to function well enough for a job in time for June's payment. My daughter is planning on moving out in February and if I can't even shower more than once/week, how can I eat? Do laundry? Take out the garbage? Get the mail?How do doctors not consider those things?

Hopefully tonight I can go to sleep & not wake up...THAT is my very last hope now.

I am so sorry to see you struggling so much , but I am still holding on to hope for you.

There may be options yet.

Could you consider a boarder like a nursing student, early education or social work type to trade your daughter's room for assistance with meals and help around the house, etc? I would've been really grateful for an opportunity like that.

Would being in Chicago bump you up on the list any? You have family there right? I am wondering if there is a more intensive program with an opening or one coming soon. I don't know that once a week will get you to your goals as much trouble as you are having.

Can you fire any of your doctors? Easier said than done with insurance sometimes. I ditched the ones who weren't helpful and had no interest in moving me forward.

Any thoughts on those resources I sent along a while back? I didn't start getting help till I went that route. Just a thought....

Hang in there Girl. I am still rooting for you and sending prayers.

Are you on disability or SSI? I apologize. I am not current on your history. From the sound of it, you sound as if you should qualify for those things. And Ma'am, is there someone in the town that you live in that you can phone and talk to? You have so many great things around you-- your son, your daughter, your degree, your home. You Hang in there! You are so much more than CRPS.

I spoke to my case manager about some kind of inpatient program. While it's sort of possible, still needs a doctor's order, which I can't seem to be able to get.

Location means nothing regarding the program. I'm so angry that they would tell me "12 weeks because we just started one" in September and now it's another 12 weeks. And that they couldn't even take 5 minutes to call me themselves.

My problem with finding a new doc is that I am so limited on medicaid. In addition to the fact that most PM clinics run 2 months out for appts. And then there's that pesky, I've tried all the "non-narcotics" that the insurance will cover, can we try a low dose narcotic? you know...just to see if it works like it did 15 months ago when I could function?

I know narcotics are not the best solution for CRPS/neuropathy, but I'm not looking for 0 on the pain scale, I'm looking to be able to stay around a 4-5 no matter what I'm doing (within reason of course). I was on hella pain meds for my endometriosis for over 2 years. Never had a problem. Was on hella ativan for 2 years. Never had a problem.

Why is it that I can put so much faith in my doctors but they can't put any in me???

I will call my CM tomorrow and ask about the NS at Northwestern. Madison won't be an option until Medicare kicks in.

Oh, the GERD, yeah, that's from the copious amounts of ibuprofen...esophageal erosions. Got that taken care of with omeprazole.(my skin is like sandpaper but wth, I'm not puking all the time)

I you

Just got approved for SSDI in July. Medicare kicks in in April.

New town....no one.
(and don't have the degree as this beast has stolen that from me)

I have contacts in that area, since I lived there and worked there. if you need someone to chat with, you let me know. I can help find someone for you within my church body. Some of my professional buddies there owe me a favor or two or ten. Just give the word.

So sweet! I'm 2 hours NW of Chicago...almost in WI. I did start a community FB group shortly after I moved here to get to know what is available in the area and they have come up with a few other names of docs for me.

Still...thinking maybe the route of amputation would get some measure of life back for me. There is zero quality of life going from bed to potty palace and back again with reruns of NCIS or Married At First Sight playing in the background.

The problem with an amputation is that they can never get to the end of the CRPS. What I mean by that is, CRPS is a neurological disease. It resides in the brain, the spinal cord, and every nerve running through our bodies. Our CRPS diseased brains connect to our CRPS diseased spinal cords, which run down the length of our bodies, which have diseased nerves all along the column, which connect to our CRPS diseased feet, or CRPS diseased arms, or legs. So, that CRPS infected limb would have to be cut off along with the CRPS infected brain, along with all of the CRPS infected nerves. CRPS manifests it's symptoms in different parts of our bodies (the pain, the swelling, etc.) that is if I understand what I've been told correctly. In other words, CRPS doesn't have a cure, not even an amputation will end it.

True enough. My docs can't even decide if it's CRPS or PN or axonopathy. Bottom line is I have 2 permanently damaged nerves and this ongoing knee thing. While I understand the general basis of CRPS, there are relatively few studies that I can find on amputation in CRPS type 2. My logical thought tells me that while my pain/symptoms align with CRPS, it is a direct result of nerve damage. Removing the nerve that is damaged (misfiring) seems then to be a viable solution. I am ok with functioning at a 4-5. I have very limited function at a 6-7 and am toast at an 8 or higher. I wake at a 3-4. Return from the potty palace a 6 on a good day. I haven't had enough good days lately to remember the 6. I am willing to explore the amputation option simply because I believe it is an option still out there to improve my function, my ability to walk/work/cook/clean/shower