[debbiehub]

Hi guys..I am feeling really down and out. The RSD, which has always attacked my muscles more then anything, is now attacking my back. It is hard for me to do most things because the muscles in my back feel like the are ripping about and can't support me. I still struggle thru 4-5 hrs of work but I can see that ending really soon. I know this is going to go into my diaphragm and lungs/heart. I have tried everything-ketamine, nerve blocks, Dr Rhodes, Dr. D amato, meds,,,,,,,just feel like I don't have much time left

Thanks for listening

Debbie

[DeesRSD]

hey Debbie,

Usually I just read the latest posts without signing in but your post tugged on my heartstrings and I just had to reply.

I know this sounds like a cliche (sp?) but HOPE and FAITH is everything. I've been where you are and I do know and understand

Sometimes I get to the point where I think whats the point and then I remember all the love of family and friends, and how important laughter is, even in the worst of times. Yanno my son has this video he made where he is dancing in his shorts and doing these really goofy moves where I just about pee myself watching, its little things like this that keep me going.

I almost wanted to say maybe you should take some time off but then again I think staying around people, even if its fellow employees, may be better. Dont isolate yourself and remember that you will get through this, really.

Treatments in the medical field are constantly changing, and they learn more and more everyday, please keep the faith and hope that they will learn and find more to help us.

The holidays to me do make things a bit harder, my family is so far from me right now, but then I remember that the phone and computer give me instant access to them, and that I will be alright

Hang in there hun, and if you ever want to talk, please just let me know k
hugs,
Dee

[Twinkletoes]

Aw, ((((Debbie)))) Stupid disease.

You are so brave!

I think you deserve my special WhataWoman! award for giving it everything you have to still work 4-5 hours.

I wish I had a magical MakeitGoAway parting gift for you.

[hannah1234]

The reason we have to keep on going on is because of those around us. My best friends front passenger seat belt was broken in his car, so he said if someone is sitting there, he wouldnt buckle up either. Well... he ended up getting in a car accident and dying. This which seemed to be selfless, ended up being completely selfish, because here I am and his entire family, friends are here left without him.

Our faith and prayer is what keeps us going, even if our physical body fails us. We are promised something greater and better after our life here on earth. Rejoice for our family we have around us, even though we feel like we can't go on. They will feel like THEY cant go on without us. Be the blessing in somebody elses life. Call a friend... write a letter. Talk to God. Look outside, and don't forget see the bird flying.

[Jenna Delaney]

i to feel your pain i am a store manager of a retail store in MN iam 26 no kids. i had bunion surgery and got rsd i also now have fibomialia and chronic fatige (sorry about the spelling) high and low bp problems. iam on ssd and am working 4 hours everyother day i think its also to much for me and dont know how long i can go on like this. my rsd in in my left foot/leg up to the knee. We are ALL here for you and if you ever want to talk we will listen... just ask for a ear ...............

[Jenna Delaney]

sorry you are having a hard time i to cry all the time its a hard thing to except if ever i still havent fully i was dx a year ago this month and my surgey was april 09.......

[SBOWLING]

Hannah,

I'm sorry you are suffering. I know how bad RSD/CRPS is. I have it full body with lungs and heart involved. Don't allow it to define you as a person. There are things that we cant control about this terrible condition. However, there are some things we can and those are
things we need to keep control of.

You have people that care for you and you must keep going for them. No matter how hard it is keep a postitive attitude it will make a huge difference in how you feel. It hard to smile through the pain when we want to cry. Stay strong and fight a good fight we loose sometimes but we have to keep going.

Take care,
Sherrie

[SandyRI]

Don't ever give up. Never assume anything. You have no way of knowing that it WILL go into your diaphragm and lungs/heart until it does. Always take one day at a time.

I'm really sorry about your back. Please try to keep your chin up and keep us posted, we all care.

XOXOX Sandy

Originally Posted by debbiehub

Hi guys..I am feeling really down and out. The RSD, which has always attacked my muscles more then anything, is now attacking my back. It is hard for me to do most things because the muscles in my back feel like the are ripping about and can't support me. I still struggle thru 4-5 hrs of work but I can see that ending really soon. I know this is going to go into my diaphragm and lungs/heart. I have tried everything-ketamine, nerve blocks, Dr Rhodes, Dr. D amato, meds,,,,,,,just feel like I don't have much time left

Thanks for listening

Debbie

[fmichael]

Dear Debbie -

I am not going to tell you that you have a duty to hang in there for its own sake, or even those around you. Just that I know someone with whom I was very close, who attempted to OD - survived due to her incredibly high tolerance to opioids - and discovered that she was far better when she woke up days later in a hospital, detoxed and free of previously undiagnosed opiate-induced hyperalgesia.

So, in balance, whether or not you accept the admonition to never give up, Sandy makes an excellent point:

Never assume anything. You have no way of knowing that it WILL go into your . . . until it does. Always take one day at a time.

In another vein, one of the many things that struck me was your reference to working 4 -5 hours a day. If you are working primarily for your for health insurance, I would suggest that even without heathcare reform (which may well be "de-funded" by the next House) and if you could afford to "walk" at this time and buy two years of COBRA coverage, you will almost certainly qualify for SSDI within 6 months of completing your application and online questionnaires, including a retro payment to your date of disability (most likely the day you quit) with Medicare cutting in two years thereafter: which would just so happen to be the day your COBRA coverage expired.

I know it isn't perfect, but it may be an option, albeit one you have already thoroughly considered.

You know that you have our love and are held in the hearts of everyone of us,

Mike

[debbiehub]

Thank you all for your kind words ...they will stay in my thoughts. I think I was a bit misunderstood. I am afraid the RSD is going to take me down. Although I think about it often, I am no where near doing anything to myself..

TY!

Debbie