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 bedbound for at least the past three. it compromises of constant pain that feels like you are being boiled alive and repeatedly hit by heavy boulders, along with muscle loss and weak skin as movement lessens. It has left me with no use of my right leg with my knee and ankle stiffened so you could draw a straight line along it from my hip to my toes.

 

Anyway, I have had this living hell day in, day out with absolutely no respite from it. Not for one measly second. And then I woke up this morning… well I think I woke up, although I may have been sucked into an alternate reality, or a hallucination! The RSD is vanished, every last speck of it is gone. I still have pain from blisters and sores, but no RSD in sight. I haven’t moved yet, I’m scared it’ll suddenly come back upon me, and I have no idea what to do while it’s not here. I feel strangely sick and dizzy, the sudden change just makes me feel really odd. I have to keep looking to see if my leg is still there!!!

 

There is a thing that can happen to RSD patients called remission where some or all of the RSD goes away. This usually happens in the first couple of years though if it is going to, and there’s nothing to say it’s permanent. It could come back in an hour’s time, a week or even a decade. This is making me very uncertain of what to do, do I keep still and enjoy the lack of pain, and hope it stay away? Do I try to get some of the things done that I need to? If it stays away at what point do I decide to start doing things rather than just waiting? I have no idea and feel really lost, so anyone who wants to put in their view would be welcome.

 

Finally, I apologise for possible bad spelling, as I hope you can understand I’m a little scattered!

Comments

[doctorsdiva.livejournal.com]

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.livejournal.com]

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.livejournal.com]

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.livejournal.com]

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!

care at the moment is tricky though. i don't turn 18 for another month, so i'm hovering in that 16-18 limbo. children's services say i no longer belong to them but adults say i don't belong with them till i'm 18, 19 in some departments. our town seems to get physio form one town, ot form another, nurses form another etc so it just makes it even more confusing

the amount of cantradicting information i cross makes me want to hit my head against a brick wall. they've been playing bat and ball with us for some time, it seems to be more about dumping hte expensive case on another town than actually doing anything to make said case less expensive in the long run!

i believe you have to aim high to reach the sky... and who's to say i couldn't just be very lucky while i'm at it? ;) one right guy turned my mum's straighter than straight friend gay, maybe john just hasn't met the right girl lol. if i can't have him though i'll just take the dogs


*cough*birthday smut*cough*

[doctorsdiva.livejournal.com]

Sounds like you've been let down all over the shop. You and your parent(s) need to be really firm with Social Services don't be afraid to make a complaint, they have a statutory responsibility to you as a child and if there is a gap between them and the adult team they should fill it!! Talk to your CAB or I found this group on line http://www.disability-cambridgeshire.org.uk/ who might be a good first point of contact.

We need to get you support and help to get you out of bed and onto working on that list of aspirations.

I only live in Leicestershire - not that far from you so if I think of anything else or hear of anything I'll let you know. I was a social worker for 25 years working with kids with physical and learning disabilities so I know how crappy the system can be and the people who work within it too.

Oh and I think you need to get that cough looked at *raises eyebrows and starts to think of birthday smut but probably needs a prompt for something that you would like but am guessing Captain Jack*

*divahugs*

[captain91.livejournal.com]

thanks for all this hun, i appreciate it. i can only say i'm glad i'm not he the one filling in the endless forms - have you seen the size of a disibility allowance form?!

and according to my mother i'm good at complaining so we shouldn't have a problem there!

i think that cough might need a Doctor though! um, 9/rose medical care for one of them degenerates

[doctorsdiva.livejournal.com]

I'll make a call to see if the Doctor is in ;)

Exactly when would you like this prescrpition to be filled - a months time was it???

*divahugs*

[captain91.livejournal.com]

the date on the back is october 21st

[(Anonymous)]

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

[kaydle50.livejournal.com]

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.livejournal.com]

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.livejournal.com]

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*

[captain91.livejournal.com]

well pretty high up that list are:
shadow a zoo keeper (and "borrow" a tiger cub)
sky dive
go to medschool
snog john barrowman (anfter turning him either straight or bi)
and go to america to see my friends

...i feel those will take quite a bit of tiem and resources before i can!

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.livejournal.com]

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.livejournal.com]

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.livejournal.com]

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!!!

[(Anonymous)]

I say damn the torpedoes, full speed ahead! Don't let those twits at the health service put you off. Get out of bed and off your back...those sores will heal faster if you're not laying on them all the time. Demand a PT to get you back moving around. If one cannot be found to visit at home, them demand transport to a facility for daily therapy. It can be done but be persistant. Tell mother to get on the phone and advocate! Do not be frightened that it will come back...it either will or it won't and it is out of your control. So get on with life, my friend. I have a guest room just waiting for you to visit. :-)

Joyously happy for you,

Hester

[dameruth.livejournal.com]

Wow, just . . . wow. I'm only now pulling my attention awya from grinding out fic to take a moment and catch up with the friends list.

Anymore, I hear about so many unexpected *bad* things coming from out of nowhere, it's a little stunning to hear about something totally unexpected but *good.* It's great, though, and nobody deserves it more than you! Really crossing my fingers for you and hoping things go well on the actual medical front, *and* dealing with what sounds like a really lousy bunch of medical caregivers.

(Fry will be awaiting his cuddles when you start your Grand American Tour, BTW.) ;)

[captain91.livejournal.com]

i know what ypou mean, after everything bad i've been through i sti.ll don't quite feel this is real! crappy health, crappy medics but very godod friends

i;ll mark fry on my list... maybe this should be a gap year though lol. now if only that logn off tour was lucky enough to co inswiude with a con, that'd be really cool

[dameruth.livejournal.com]

Well, if the scheduling ever works out for you t be at a con this side of the pond, you can bet I'd do my best to be there (finances and time off from work allowing, though -- darn Real Life!). :D

[captain91.livejournal.com]

now if only i could join you in the fic grinding out department, but i'm a bit too bouncy!!!

i'm undecided if i should try a short fluffy happy fic to clear my system or just write the ending to the larger fic. i've been havign trouble with the current scene i'm on, it just doesn't want to move where i tell it (jack want to seduce owen thenm find himself and do the same there!). does either work for you?

[dameruth.livejournal.com]

You're definitely entitled to be bouncy and distracted. :D

I frequently find that if a larger fic is stuck, it helps to write something shorter, just to be writing something different. Of course, it's also easy to get totally distracted by the short fic and take forever to get back to the long stuff, too (not like I'd know anything about *that* . . .). :P ;)

[captain91.livejournal.com]

to do list:
badger hospital
badger ot
badger physio
eat
enjoy reading anc concentrating
ring hospital to find out why i don't have a responce

and newly added to the list is to find a better consultant since i'll be needing one now


at the mometn getting out of bed isn't feasible, the wheels ont he chair stick above the seat for most of the way, where i'd have to lean against them they'd really press on my sores. the chair is a nightmare in all the bolt heads by the edge of the seat holding it on. i'm tryoing to figure out other ways to get weight off my back though, just since i can't sit up myself it's kind of an empty list