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Originally Posted by Neko1221
Thank you all so much for your advice and support! It's been a pretty bad couple of days, but I'm trying to hold onto hope!! Through some research I found that I have a couple of great RSD specialist in my area (NJ/PA) Sadly, one is booked through 2014!! And the other does not take insurance! So neither option would work for me - although I'd be willing to sell a kidney to get into either! I did, very fortunately, find a pain doctor that was familiar and knowledgeable with RSD/CRPS that was willing to see me right away. I had my appointment this afternoon and he did confirm the diagnosis of RSD/CRPS. I was devastated, but not surprised. He gave me a prescrip for PT and will be giving me a sympathetic nerve block March 5th. I am praying with everything in me that the block has a signifigant result! I'm nervous about finding a therapist and about PT in general, but I know I need it. In only a few short weeks my toes are already curling down and I'm hardly able to move them (not only because of the pain - I just simply cant)
On an emotional note - I find that I'm having hard time holding it together in regard to dealing with my family (even my husband) Some of them seem to get it - but some are so painfully clueless that I cant even stand to be in their company! I called my husband after leaving the doctor and through gut racking sobs explained everything... his response "Why are you so upset?" WHAT?! Why am I so upset??! WTH?! I couldnt even formulate a response!! He really is so blind and clueless about how horrible my pain is and how horrible RSD is that I wonder if he has even been present in the last month! My MIL was no better. She knew I was going to the doctor today, as she had to pick up my children because of it, and she didnt even bother to ask how the appointment went! Finally after being with her for almost an hour I asked her if she'd like to know. When I explained everything to her she waved her hand in a very 'Oh whats the big deal' manner and pretty much told me I was overreacting! I was flabbergasted and sick! Thankfully my own mother was much more understanding and was almost as upset over everything as me. Although I wouldnt wish this pain on my worse enemy, I wish I could plug people into it, if only for a moment. I'm certain they'd be shocked, and a lot more understanding!
Sorry, I'm just venting now!
Again, thank you all so much! I have read so many posts on here, and although so many of you are suffering so greatly, you share your story and support each other!
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It's good to hear that you are getting treatment and that you have found a doctor willing to try to help you. Don't be too nervous about the physical therapy...just be open and honest with them about what you are going through. If something is too much for you...tell them. It's important to push yourself but it's just as important to make sure you are doing what is good for your long term recovery and not pushing yourself too far too fast so that you end up down for even longer.
I'm very sorry to hear what you are going through with your husband and MIL...this happens a lot to those of us with RSD. All I can suggest is that you try not to let it get to you too much because the stress will only make your RSD that much worse. Simply come to terms with the fact that they don't understand. You can educate them whenever an opportunity presents itself...but you cannot FORCE them to "get it." Turn to those in your life that you can count on for support and understanding and don't try to seek it out from people who are not willing or able to give it. You can hope that they turn around...especially when they see how you have to deal with this every day and that it's not just a passing thing.
Focus yourself on doing what you need to now in terms of treatment and stay optimistic. Don't put all hopes in the block being a cure all...that's just not how it works. It is a treatment and while I pray that you get relief from it...it is not the ONLY treatment. So IF it doesn't work, don't feel completely destroyed and deflated. I say this because I made the mistake of thinking the block would be a cure all and that this pain would disappear. When I didn't get relief from it...I was a mess and it was hard to crawl out the hole emotionally and refocus on the physical therapy and other treatments. I managed it...but it was difficult. So go in with an open mind and the understanding that IF it doesn't work that there are other things out there.
Good luck and take care. Keep us posted.