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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 03-06-2009, 04:05 PM   #1
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Bombogenesis HB User
Living alone with CRPS and having to work full time

I am at the end of my rope. I was in a serious car accident 10 years and broke my ankle, fibula, tibula and the whole bony pitrusion. I have a permanent plate and screws that hold my ankle together. PT was painful and my fibula was not healing after 9 months and they did not know why. They gave me a bone stimulator which did not work. A year after my accident I was diagnosed with CRPS (formally RSD) and I went to a pain management center and had a few nerve blocks and they did not work. I tried countless medications and some PT but as a lot of you know the insurance companies will not keep approving PA to maintain a condition.

To make a long story short I was engaged when the accident happened and married a couple of years later. I was in a wheelchair for 5 years and had to learn how to walk again. But I did it and I was not working so it made it easier. Well 3 years ago my husband (now ex) left me for a co-worker and he is now married to her. I live alone and had to get a full time job just to survive. I got the job 2 years ago and I am grateful but I am in a lot of pain and it is hard to just do the day to day things. I got approved FMLA thanks to my doctor who filled out the paperwork but we all know it is not considered a positive thing at all. I live in a state where there is a lot of snow and I can't shovel. I had a few men shovel for me but they never came back. Too long of a story. I have my name in several churches and have asked hundreds of people but no one is able to come out and shovel around my car after a big snowstorm. I have no paid time off left and I have missed so much work because I could not get out to get to work. None of my co-workers live near me or work the same schedule I do. I am not looking for suggestions because I am out of suggestions. I do see a thearipist by the way and she ran out of suggestions. But my condition is getting worse because I have to do everything myself and I walk with a rolling cane. The only thing that helps a little with the pain is certain narcotics but if I have to drive and work everyday I can't do it. My department for the most part is supportive but they can't understand why I can't get any help. Funny how they say that because almost all of them have husbands/boyfriends that drive them to work, shovel and do other things that people normally do in relationships and they are physically able to do it themselves.

Sorry so long I could go on and on. I just want to know any of you out there have this painful condition who live alone and have to work full time and have no one to help how do you do it? That is what I really want to know.

Thank you and God Bless!

Last edited by Bombogenesis; 03-06-2009 at 04:05 PM.

 
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Old 03-06-2009, 04:46 PM   #2
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Re: Living alone with CRPS and having to work full time

Hi Bombogenesis,


I Don't know anyone who could do it alone!

I don't have CRPS, or RSD, but a dear friend has had for over 25 years. Her doctor at the time thought it was something quacks used to get money from .insurances. Did they tell you there is a 6 months window if the spinal blocks are to work. From the time you first have it? Her doctor was devastated for what his not diagnosing her sooner, put her past the window.

She was almost alone, but had small child and her husband died. She does not work and lives in desert, so no snow. Things are really hard for disabled. She has an implanted pain blocker, with battery pack on out side. This helps.
She now gets Social Security for disabled, and some one to come in 4 days a week, for 3 hours. Her child is a teenager now, And has baby, and going to school. She gets Medi-Cal, I think it is Medi-Caid, in other States.

Have you talked to anyone about the pain blocker, she has two, since the RSD has spread. The littlest trauma, and there is the RSD.or CRPS! She doesn't like what the initials spell, so she stills uses RSD.

I will pray you find the help you need. I will try and find out what the implant is called. I know the company that supplies it, works closely with the doctor.

I know you didn't want suggestions, But I Just couldn't Help Myself ! ! :-(

This probably didn't help much, but I just wanted to give you a Hug; Also let you know your not alone. Even though you are physically.

Hugs, Diana

Last edited by DianaRo42; 03-06-2009 at 05:23 PM.

 
Old 03-06-2009, 05:10 PM   #3
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Re: Living alone with CRPS and having to work full time

Hi DianaRo42 thank you for your reply! I had the spinal blocks 1 year after I was diagnosed and that is why it probably did not work. Yes let me know what the implant is. As long as I can drive or work. But I won't be able to do it much longer if I don't get any help.

 
Old 03-06-2009, 05:30 PM   #4
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Cool Re: Living alone with CRPS and having to work full time

Hi Bombogenesis

I just corrected my spelling and added thought.

I will get back to you. The implant makes a big difference. You can turn off at nite if interferes with sleeping.

Your on line?

Hugs, Diana:

 
Old 03-06-2009, 05:34 PM   #5
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Re: Living alone with CRPS and having to work full time

Hi Bombogenesis,

Electronic stimulation ended weeks of nagging shoulder, back & neck pain. I misread quote. No it's not it. But is called a stimulator, implanted under the skin. You get a magnet to turn on off. Please check out. My friend was first person in desert to have it implanted.

Brain not what it used to be. Was senor moments. now added low or no oxygen to brain added in. Iron level was one, Yes only one. Just realizing the damage. Now hgb 12.5 and iron don't know, but enough improvement I can tell damage.:-(


You can read this one. The implant is best way to go! I'll see if I can get her to contact you on board.

Hugs, Diana

Last edited by DianaRo42; 03-06-2009 at 05:47 PM.

 
Old 03-06-2009, 06:37 PM   #6
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Re: Living alone with CRPS and having to work full time

Quote:
Originally Posted by DianaRo42 View Post
Hi Bombogenesis,

Electronic stimulation ended weeks of nagging shoulder, back & neck pain. I misread quote. No it's not it. But is called a stimulator, implanted under the skin. You get a magnet to turn on off. Please check out. My friend was first person in desert to have it implanted.

Brain not what it used to be. Was senor moments. now added low or no oxygen to brain added in. Iron level was one, Yes only one. Just realizing the damage. Now hgb 12.5 and iron don't know, but enough improvement I can tell damage.:-(


You can read this one. The implant is best way to go! I'll see if I can get her to contact you on board.

Hugs, Diana
Thank you Diana! I would appreciate to learn more about this.

 
Old 03-06-2009, 09:29 PM   #7
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US miss HB User
Re: Living alone with CRPS and having to work full time

I'm sorry, but I feel for you. I got lucky and am staying in some friends guest room. My room mate of 10 years threw me out because my illness was upsetting his pregnant girlfriend. I live in a state that doesn't believe childless people are worth helping and totally feel your frustration at the lack of services. I hope you can find something. I've been emailing every state senator and congressperson I can find an email address for. Next on my list is the director of the Department of Human Services. I can't even get into a homeless shelter without undergoing drug rehab so I totally get the frustration levels. I haven't heard much back from the people yet, but I'd suggest emailing your legislators. At least you'll feel better having ranted at someone in the government.
alice

 
Old 03-10-2009, 05:37 AM   #8
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Re: Living alone with CRPS and having to work full time

Hi Bombogenesis:

I have the info! Its called SPS - Spinal Stimulator, made by Medtronic, I think that's how you spell it. Put in by pain management doctor.

My friend tried to get on boards, the prints to small, her reading glasses were broken. So till she can get new ones, she can't read small print So can't register.

Do you go on CafeMom? She is on that sight, she can enlarge print.

Hope this helps you.

It was 96 degrees here, that's why the sun glasses.

Hugs, Diana

 
Old 03-10-2009, 06:03 AM   #9
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Re: Living alone with CRPS and having to work full time

Quote:
Originally Posted by Bombogenesis View Post
Thank you Diana! I would appreciate to learn more about this.
My friends name on CafeMom is XXXXXXXXX

Did you get other post? Right below this one.

Hugs, Diana

Last edited by DianaRo42; 03-10-2009 at 06:18 AM. Reason: Oops! Read rules can't post contact info on boards.

 
Old 03-10-2009, 06:05 AM   #10
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Join Date: Jan 2009
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DianaRo42 HB User
Re: Living alone with CRPS and having to work full time

Quote:
Originally Posted by DianaRo42 View Post
Hi Bombogenesis:

I have the info! Its called SPS - Spinal Stimulator, made by Medtronic, I think that's how you spell it. Put in by pain management doctor.

My friend tried to get on boards, the prints to small, her reading glasses were broken. So till she can get new ones, she can't read small print So can't register.

Do you go on CafeMom? She is on that sight, she can enlarge print.

Hope this helps you.

It was 96 degrees here, that's why the sun glasses.

Hugs, Diana

Last edited by DianaRo42; 03-10-2009 at 06:20 AM. Reason: Oops! What did I do, this is not what I wanted.

 
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