RSD big update

[captain91]

Erm hi *waves*

Well I know I don’t use my blog for much (I hope that’ll change soon though), and don’t know if anyone actually reads this, but I had to write this up.

As some of you will know I have a condition called Reflex Sympathetic Dystrophy (RSD) that has been increasingly debilitating for me over the last six years, leaving me

Comments

[doctorsdiva]

Wow that is amazing and scary all at the same time. Your condition sounds painful and debilitating so any respite must seem like a miracle. I think you should probably check this out with your doctor (and yes I did have to go back and take out the capital D :S) just to be sure nothing else is going on and then enjoy it whilst you have it. I know it must be very frightening not knowing when it may return but you would be cross if you spent hours, days, weeks or even months thinking about that rather than enjoying the freedom from pain. Well that's what I think. Look after yourself honey and I have everything crossed that this is the remission you deserve.
*divahugs*

[captain91]

wish the could find the Doctor, get him to do soem jiggery pokery so it stays gone, but i don't think that'll happen!

i agree on the doctor front, the main problem is we have such a poor health team. our gp only just learnt about rsd when she joined the practise, and my consultant is about as much us as a chocolate fireguard! i haven't seen her in probably three years as she doens't do home visits.

[doctorsdiva]

Do you have a social worker? If not it might be worth ringing your local Social Services Adult Disability Team (I know, labels?!! grrr :S) and ask for help from them - they might be able to arrange input from OT's and perhaps help with getting you to the doctor or the hospital - you have a right to see your specialist - don't let them fob you off - this needs looking into so you can get started on turning John Barrowman (good luck with that by the way - pink porkers with wings come to mind hee :D)

*divahugs*

[captain91]

we had a social worker but she left a few months ago (no loss in my opinion since she though she was above every one else and though sending me into residentail care wpould be the best route

[anonymous]

Oh dear one, that is so wonderful. I can barely see thru tears of joy. Thank God, thank God, thank God.

[kaydle50]

Dear Captain, I was so excited that I forgot to sign in earlier.
I hope you will do EVERYTHING that was on your wish list, starting with #1, of course.

[kaydle50]

That's great---treat a bed-ridden pt and not visit them at home.
OK, that was then. This is now. Will you require PT before you start ambulating again? May I ask---how does that work?

[captain91]

i'm still figuring most of that out, but since my back's covered in blisters and sores (seriously i don't think you could touch a fingertip to healed skin) i need to get that sorted before i can think physical

i've lost most of my muscle, but i thin k i could get into a chair once those are healed, if they ever got me a suitaable one. i have one with a reclining back and plate to hold my leg straight (both needed due to my joints) but it has high wheels that coem almost all the way along the seat. it's always been an absolute nightmare to jump them wiht many bruises in the process

physios are hard to come by that coem to the house, i wait5ed over a year last time, and don't currently have one, which will be a problem. i find rsd spreads quickest if a part isn't mobile, ie i twist my left ankle and it grabs on very fast

i forsee many many battles with the hospital *sigh*

RSD

[anonymous]

Isn't that good news? after all this time? I would take it one step at a time and indeed I would consult with your doctor. But I would take a dip in the water as it were and try and move maybe even sit on the edge of the bed. Sure there is a chance it may come back ( can understand you being a little scared) But if there is a chance of a little freedom from your room for even a short while I'd take it. I pray the pain stays away for many years.

David x

Re: RSD

[captain91]

thank you hun

movement is still coming agravaringly slowly since despite the rather impresive rolls of fat on my front i have very little muscle to do anything with

still, this a.llows us more treatment options for sores and building muscle than i had before after which nothing can stop me.

with it being more or less 36 hours gone i'm gettign mroe confidnet, the stupid laws of physics won't bend to my will thoough :(

How Wonderful for you!

[anonymous]

It is an awesome blessing that was gifted to you this morning! Sit back and enjoy each and every thing around you today....and tomorrow if you are still in remission, then get up and do a 'few' of those things you have been wanting to do.

But first, I invite you to express your gratitude to God for such a gift and just take it one step at a time from there!

Once you start moving about, please be careful as to not bump yourself on anything....that simple jolt could be enough to bring the RSD back, and with a vengeance. Mine did!!

Wishing you all the best!

~God Bless~
Coach Marla
http://www.rsdcoach.com

Re: How Wonderful for you!

[captain91]

thank you for finding this and commenting

i can assure you i'll be very careful (vell as careful as a clumsy person can be), i'd almost forgotten what ti felt like to not have the rsd. i still have p-ain form sores and other health problems but ti is so much better than i ever thought i'd get. many times i've just started crying because i can't believe this could really happen and give me soem peace

[anonymous]

Captain, Wonderful news!! I don't often pray but I pray that this lasts for you and the rsd is gone. Best of luck with it all! You are in my thoughts

Jes

[captain91]

thank you hun. i'm kind of divided on my opinion of a god beign out there, but this doesn't seem like soemthign just a body can do with no change in any aspects. if there's a god out there i think he wants my attention -- nice early birthday present!!!