The Call
 

i'm praying for you Always. hope you get a call saying you are next in line for the next session. hugs coming your way.

Can do! All of the above are coming for good measure. I am going out with salt now...

Let us know what you hear.
Sending hugs and healing love, :hug:

You got it. Oh, and can you also do something so that the Cubs will win the World Series, while you are at it!? I tried being good to see if that would work, but that didn't go so well. I think I just jinxed them.

You are in my prayers. I hope you are first on the list!

Too funny! I used to serve at a church in Yorkville. Oh.. and may I ask.. Who are the Sox? Oh, yeah yeah.. the Red Sox... Now I remember. GRIN.. Seriously, I hope your son's team does well, The Chicago White Sox.

You continue to be in my prayers. I just wish I knew why CRPS is such a difficult disease to get adequate care for. It really does get frustrating sometimes. I wish you well.

You mean, Ernie Banks is not your hero? You're going to make me cry! :eek:

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 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. :hug:

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 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.

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.

Ahhhh, so you are not really convinced as to the complete picture of what all you have going on. I so totally get that! My whole pain battle began with Morton's Neuroma which was masking my CRPS beneath it. So, I actually had two separate things going on at the same time in both of my feet. I don't know if you are familiar with Morton's Neuroma or not. It is a matter of a single nerve being crushed by two bones in the foot. They cure the Neuroma by simply removing the nerve from the foot surgically. The only problem with mine was, regardless of the fact that the nerve was removed, the CRPS stayed and has been with me ever since.

So, that leads me to a question. When you say Amputation, do you mean, amputate the nerve and leave the limb? Please educate me. :D

Wow, that must be so hard to not be able to take any meds, due to a lack of tolerance. I can definitely relate to that to a degree. There is a whole list of medications that helped me, yet the side effects were so harsh that I simply could not take them. It took me a very long time to sort through all of the meds that we tried in order to find the few that I can take without too many harsh side effects.

Question: Have you ever tried Voltaren Gel? It is a topical gel and is very good at reducing pain for me. There is also a Ketamine gel mix that works wonders for many people too. Maybe those would work, since they are not ingested.

Errrrrr, Insurance!

Are you hoping they customize therapy based on RSD?
 

There you go! You keep that fighting spirit. :mf_swordfight:

I know it gets tedious looking for a doctor but if the ones you have aren't helping then move on. The degree of function loss should be setting off alarms not apathy. And pain should be treated not accepted if possible. Definitely demand more from your doctors.

It may be worth looking at a rehab outpatient or inpatient program. The admissions people could let you know. It's their job to determine if patients are a good fit for their program. I am really surprised your wait has been so long on the other program you were on the list for. Ugh.

I think checking into the NS at Northwestern is a good idea too. It's just information and the Peripheral Nerve specialists like mine have a different approach and even different diagnostics.

Remember my mantra to 'start low, go slow'. If you start at two minutes on the bike and build to five that's just fine.

I :heartthrob: you too.

Anger can be a great motivator, just don't turn it on yourself. This is not your fault. You could not have 'known better". Try not to 'coulda, shoulda, woulda'. I really beat myself up over healthcare decisions that I felt contributed to my CRPS (mainly choosing the 'wrong' doctors and having complications)...as if that helped me get any better or I could do anything about it. :rolleyes: Keep moving forward and ditch negativity that holds you back or gets toxic. Eyes on the prize, girl!

You are very welcome ;)