Hi All,

My 22 year old daughter has been DX with RSD since May '05, but has suffered with it for the last three plus years. It was in her R shoulder/upper arm, but unexpectedly spread to both legs at once.

She is using a wheelchair while trying to attend college fulltime, but having a very difficult time. This is the third time she has tried to go back to school and hopes to finish this quarter, but it looks like an uphill battle and I don't know if she will be able to finish.

She has not worked since high school and so I don't even know what benefits are available for people who don't qualify for social security, workers' comp, etc.

She needs to be a full time student to remain on our insurance or be qualified as disabled. I have no idea where to go to get information on applying for disability and would appreciate help from those who know more.

Thanks

I'm sorry to hear about your daughter...

I hope these sites help you.

http://www.ssa.gov
http://www.disabilitysecrets.com/soc...ility-rsd.html

Hi

Is there anyway that your daughter could be supported in order to remain in college? I know in the UK I am registered as disabled (I'm 20 with severe full body RSD) and I use an electric wheelchair and have a live in 24hr carer to help me with stuff. I also get alot of academic support (scribes etc) for lectures and help with assignments etc because i can't hold a book etc. In the US can you be recieveing disability and attending college?

Good luck!!

Rosie xxxx

Hi Momtres,


Has she applied for Social security disablility. Yea thats based on how much you have earned in the past , but she can get that AND SSI, which is supplimental income and that pays for the rest of stuff. I believe if i remember right that if she gets ssd, and gets below i think 400$ a month then she is elidgeable to get SSI in addition to and then also get medicare and all the health insurance.

Hope i helped.. i would also look on the SSD web site.. or give them a call , they are really nice and konw alot! (at least theones i talked too...)

How is your daughther doing???

Amber

Talk to a SSDI Attorney. They are sometimes free unless you win or charge minimal for wining. They have the ins and outs of what can and cannot be done. Even though SSDI is Federal it is still handled on a state level.

I strongly recommend you do this. It surely cannot hurt! I was turned down the first time after applying for SSDI I have alll over body RSD and than I got a attorney. I feel much better about my decision this time. Even if I lose again at least now it is in the hands of my attorney and she will handle everything from here.

Good luck and I will keep my fingers crossed for ya. Chin Up!!!!!

Mark

I appreciate all of the info so far, it has helped. My main concern is that we keep her insured.

This latest flare started mid October and was so sudden and unexpected. She is having her third block this week. So far they haven't helped that much. She is qualified as a disabled student at her university and receives help with classes. She just recently received a diabled placard from the DMV, which helps minimize walking (well, wheeling) to classes.

Her school is five hours away from home and she is determined to stay even though she is on her own. Her pain meds are pretty high right now and I don't know how she does it. She is a strong girl and I am very proud of her, but worry is my general state of mind.

This illness doesn't just affect her, it has turned the whole family's life upside down.

Momotres...perhaps it would be a good idea if you stay here on the board...for some support for YOURSELF. Of all people, WE know how rsd can affect not only us, but our families. I'm getting into a mode right now where I am starting to feel sorry for myself, because I feel my illness is putting undue strain on my family (my SO and my son). Because I can't do much anymore, they have to "pick up my slack" where household duties are concerned. And when you have a home with 5 acres of property, there is a LOT of stuff to be done outside...which is where they usually focus their duties...and now they have to help with the laundry, cooking, cleaning, etc. I feel very very guilty having to put that on them. They say they don't mind...but *I* mind!

And when WE get depressed...depression is CONTAGIOUS. It truly is. When someone you care deeply for is depressed - and many cp-ers (chronic painers) - get depressed, the loved ones become depressed as well. Because the loved ones feel "if only there was something I could DO to make them feel better...but there seems to be nothing!" Take the illness we have away, and think ONLY of the depression, and you still have the "if there was only someting I could do to make her happy again..." - and you'd still feel that was a power you should have for your child. But you DON'T have that power. There is nothing you can do to change that. And the same goes for RSD. There is nothing you can do for her, mom. Nothing except love her. And accept her for who she is, and pray for her.

There is a chance she may go into remission. Some ppl do. It's not COMMON that it happens...but it happens. And yeah, our pain meds are high. I go back to my pain doc today...and I'll have to ask for an increase. And I feel HORRIBLE doing that...cuz it seems every time I go, I have to ask for an increase. I'm starting to feel like a druggie! I know I'm not...my doc knows I'm not...my SO and son know I'm not....but for those who are on the "outside looking in," when they hear what meds I take, and calculate "how much it would sell for on the street," they think that since I can tolerate that high of a dosage and not appear stoned out of my gourd, I must be some kind of addict. But they don't realize that only those ppl who DON'T NEED THOSE DRUGS FOR PAIN will get "stoned out of their gourd" on those doses. Cuz the medication going to the "pain receptors" aren't needed in those people so it CAUSES the "stoned" feeling. In those of us who TRULY NEED IT, it works properly. That's how you can tell the difference between an addict, and someone truly in pain. So, your dd (darling daughter) has that going for her sometimes too.

I know how you feel. I do. I listen to what my SO says and although he's WONDERFUL, I know he didn't "sign up for this" when he met me. Sometimes I wonder why he stays with me. He certainly didn't MEET ME this way. I was a LOT better than I am now. I think I've gotten about 100 times worse over the past 2.5 years. I feel I've burdened him...but his love supercedes that I guess. And I love him even MORE for that, even MORE for sticking around, for caring for me, for LOVING ME still, regardless of my imperfectness. And I'm sure your dd sees that in you as well.

Yes, she's an amazing girl to go on like she is, regardless of her pain. Regardless of the struggle she is enduring. RSD is a MONSTER of a disease. But she's fighting it....and we can see why. With a mother like you by her side, a mom who cares as much as you do, who loves her in spite of her imperfectness, who cares for her and allows her to follow her dreams, 5 hours away from home, even though you probably worry your head off...you're letting her do what she dreams of doing. You're letting her do what RSD is trying to STOP her from doing. And that's VERY important right now. When she STOPS doing what she wants to do is when you worry. Right now, allow her this. Let her follow her heart, and her dreams....and you, mom...you keep on doing whatever it is you've been doing, and encourage her not to let her RSD stand in her way. She's stronger than this monster is. And so are you. Together the two of you will withstand it.

I'm actually encouraged by her. And I do hope you stick around, and share with us the stories of her success...and cry on our shoulders when you need to...and laugh with us when you can...and learn from us when you have to. And let us learn from you.

Hugs
LisaM

This thing does destroy everything it touches. In general I try and stay positive about it and think of the things it's given me - but today I am miserable and fed up of always being in pain and fed up with trying to be a "normal" student at uni - when I am obviously not. I just wish people would understand abit more - I know they can't, no one, not even other RSDers can fully comprehend what each individual is living with, and even when we say "I understand" we do... but only to a degree. I'm fed up with friends that go "but you're in a wheelchair, why can't you go out?" "because the wind hurts, the air hurts, everything hurts so much I can't bear to sit or lie or do anything but think of pain".. and when you're out the "happy face" has to come on so they never see the pain or the tears or the fear.

Thats where family come in. My mum has had to live with me getting worse and worse as time has gone by, going from mother and friend, with her daughter at boarding school, to visiting her in a hospital an hour away every day for 6 months, to having her back home and gradually taking on more and more care stuff till she has to do everything from dress me, transfer me and feed me. Mum's been there when the pains been so bad that I fit, cleaned me up when the meds have made me throw up everywhere,liquidised all my food so I could swallow it (and threatened to place an NG if I couldnt keep enough food down), try to find something that will take the pain away or reduce it enough for me to stop screaming in pain. In the last 4 years she has aged - carrying a twelve stone girl up and down the stairs does that to you I suppose. Then, as I've grown older and more able to manage my condition on my own - learning to hide the pain, to keep the screams inside she has had to learn to let go, to trust that my friends can look after me appropriatly, that I have to learn my own lessons in pacing and how much I can manage every day and that if I choose to do too much and ignore the pain warnings then I will end up in flare up. As a mother and a carer when do you step back? especially when you know the person is deterioating. Is it better to give them the freedom to make mistakes - and know they will suffer for days afterwards or is it better to keep them wrapped up in cotton wool and keep them safe from the nasty outside world, which doesnt think of sensitivites to light/ sound/ touch/ vibration or wheelchair access or any of the myriad sensitivities that us RSDers have whilst knowing that preventing me from going out means I lose touch with friends and am missing out on more of my teenagers years which I never get back.

I reckon that being a daughter with RSD what mum and I have learnt most is compromise - learning how to compromise with pain. What can I do and she do which will enable me to be "normal" (excpeting wheelchairs/ carers) and join in with my peers, without spending the next week in tears in bed? how can we balance life as a family being normal with RSD - holidays have to be in warm but dry climates with nearby hospitals and wheelchair access, notes allowing the carrying of syringes and medical equipment gained from the embassies, nothing can be spontaneous.

Thats why for me going to uni was one of the biggest decisions mum and I ever made. By going 4 hours away it meant that I had to learn to live with this on my own. I had to learn the lessons that she learnt so much more quickly - she can tell by looking at my skin, my face and my body and know when I need to stop before flaring (does anyone else get "the look?").. It is scary not having someone that knows with you - my carers weren't even told I had severe neuropathic pain and that they couldnt touch me unless i had had b/t meds before they started. But it means that I cant rely on mum for everything - I know if I ring her and say i REALLY need you she'll be there, but in general I am learning to be an independent (minus carers) adult and to managing my own life -which we both feel is the main goal.

RSD has changed my family. Mum has fought against adapting to it, but realises we have to whilst trying to maintain my sence of independence - even if all that is is socialising with my friends on my own. As I've deterioated she has been incredibly strict - she will only take over and help when absoloutly necessary - when my arms totally died after an EMG she spent 2 days refusing to help me (eg feed me) in the hope that would "force" them to come back... My sister, who is a year younger than me has had to get used to mum having to spend hours with me every day, and is jealous that I get the time with mum.... she has had to learn that physically I have to come first, which is horrible for all of us. I hate relying on people and will do anything to avoid having to be. I hate that this disease has changed me as a person and my family dynamics. Luckily my family has managed to avoid the "me me me syndrome" of chronic pain - where the whole focus is on the individual - it's just our roles have changed.... in some ways its funny... 4 years on and my sister still brings up "well why can't Rosie do the washing up?". But despite the niggles RSD has in many ways made mum char and I stronger. (unfortunatly it also ended up with mum and dad divorcing....but thats been on the cards for years.. she got fed up with sharing him with 2 other women in different countries and he couldnt cope with the shame of having a cripple for a daughter...).

I go home on Wednesday to a new house, and I know the dynamics will have changed again. We have moved in with my grandmother as she is dying of stage 4 lung cancer and has been paralysed from the waist down. So mum will be looking after 2 of us, whilst working a full time job as a nursing sister to support us.

Ok this has turned into a long rant..... but mums are great!! /...and sorry this has turned into a more personal rant than I meant it too...

loads of love

Rosie xxxxxxxxxxx

Rosie -

I just wanted to say that reading your posts, you are one of my all time favorite heroines. Disabled or not, you will be able write your way in this world.

Mike

Thanks Mike I don't deserve it though!! Anyone that battles this is amazing....!!! especially without the amount of help I recieve...

love

Rosiexxx