Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Disablity


  • Please log in to reply
13 replies to this topic

#1 ConcernedSpouse

ConcernedSpouse

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 24 May 2012 - 06:19 AM

Hi everyone...This is my first post and I make it out of concern for my wife. We found out a few years ago that she has limited systemic sclerosis. The past year or so I have watched her health decline in many ways. We found out last year that her aortic valve has begun to harden, she has intestinal metaplasia (just a small step left to stomach cancer), arthritis in her hips and shoulder. Her Raynaud's has gotten to the point that anything below 75, her fingers and toes are purple, she is constantly battling splits on her finger tips despite lotions and the topical steroid cream they gave her to use (she types all day and they make it very difficult and painful). When she is at work, she is directly under an air conditioner vent and has requested that it be closed, that goes well for about 15 minutes then everyone starts to complain that they are hot. She has tried using a small space heater but is met with complaints on that as well or it just makes the air conditioner run longer. When she does get off work (she stands for long periods during the day) her feet, ankles, and lower legs are swollen. She has medications that she is supposed to take but she has to eat with them and she can not eat during the day and work, the stomach complications keep her running to the bathroom anytime she eats, so she doesn't take the medications. She battles fatigue all day and the insurance company will not cover the medication the she was using for this (it's over $1,000 a month with no insurance!!). Good grief, I've piled it on but I wanted you guys to get a good picture, I apologize for the length. So...at what point do they consider this disease a disability, how likely would she be able to even qualify, and how should I approach the topic with her? She is only 38 and I want her around and as healthy for as long as possible!

ConcernedSpouse

#2 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 24 May 2012 - 02:12 PM

Hi ConcernedSpouse,

Welcome to these forums to both you and your wife!

I'm very sorry to read that your wife is suffering with Limited systemic Scleroderma. I've included links to Scleroderma Esophageal (Throat) Involvement, Cardiac (Heart) Involvement , Fatigue and Raynaud's which I hope you'll find helpful and informative.

We do recommend that your wife is treated by a Scleroderma specialist, as opposed to a general rheumatologist, as sadly many rheumatologists do not have the expertise and knowledge to deal with this complex disease.

It's such a shame that she doesn't receive more support at her workplace; I think that a lot of the problems are that Scleroderma is such an unusual and relatively unheard of disease that many people do not realise the seriousness of it and it's complications. I'm in the UK so can't advise you about disability in the US but I have included a link to our Disability page which includes some previous discussion threads on this subject which I hope will help you and that you'll find interesting.

Now that you and your wife have found our forums, please keep posting and let us know how she's faring.

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#3 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 24 May 2012 - 08:17 PM

Dear ConcernedSpouse,
You are not piling it on. Scleroderma piles it on. We know what you are going through. We know what your wife is going through and many others have gone through the same things.

First of all, scleroderma is a reason to qualify for Social Security Disability. It is not an easy process and can take time, even years. The typical applicant will get turned down and will need to appeal. (I qualified immediately because my kidneys failed and even then it took months before it actually kicked in.) I would strongly suggest you start the process, especially keeping very good records, some people even suggest keeping a daily diary of symptoms, and all copies of medical tests and reports. You may even want to look into a lawyer who specializes in SSD, it may speed things up but a portion of the benefit will go to her.

There is also The Americans With Disabilities Act. You may want to look at this to see if there is anyway your wife's workplace needs to accomodate her.

If there is a Human Resource Department, perhaps she can contact them. Is her employer aware of her illness, does she want to make them aware? There can be issues with this sometimes.

There are physical aids that can help, things like fingerless gloves, mouse warmers, foot warmers etc. She needs to take her medications, if she is having GI issues she may have to take medications to control that.

This site is an excellent reference for both medical advice and personal experience. You can search anything using the search box.
Please tell your wife about the forum, maybe she will be willing to share and in doing so help ohers. I wish you the best on this journey, because scleroderma doesn't go away. There are ways to manage it and keep it from progressing though.

Again, it is vital she see a scleroderma expert. Having a concerned caregiver like yourself will be a tremendous help but take care of yourself, too. I can honestly tell you that after 8 years it is taking a toll on my "concernedspouse."

miocean
ISN Artist

#4 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Auckland, New Zealand

Posted 24 May 2012 - 09:47 PM

Hi Concerned Spouse,
What concerns me from what you have written is that you say your wife does not take her medication!!!! I have had Limited Scleroderma since I was in my twenties and if I had only had a diagnosis then I might not have had as many issues now as I do have at 68. By the time I was 40ish I had Esophageal and Large Bowel problems which required surgical intervention and STILL nobody recognised the problem.

It is easy for me to say, but is keeping this job more important than her health?

OK, she will never be super fit and healthy but doing nothing now won't help long term. You say her legs swell during the day, but you don't mention leg or foot ulcers, and they are a real possibility if she does nothing.

It could be that it is time for you to sit back and take stock and decide together what is most important to you. My children, who are almost the same age now as you, had a mother who would say OK this is the problem - what can we DO about it. Now I am putting on my Bossy Mother's Hat and saying the same to you.

Everybody here knows exactly what you are dealing with and some of us have strategies and ideas that could help.

Warm Hugs and best wishes
JudyT

#5 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 25 May 2012 - 05:04 AM

Hello Concernedspouse

Well if scleroderma doesn't give you a reason to be concerned nothing does! I am in the UK so I know this won't apply for your wife but I was retired at 40yrs of age because of scleroderma BEFORE I even had internal organ involvement. I was also entitled to the disability benefits BEFORE I even had internal organ involvement. Yeah, I went on to develop guess what?

Where ever you live the disease is the same and can be disabling and life changing for some of us and not for others. If it is becoming disabling then getting prepared is best and there is nothing wrong with looking at your options.

I pick up on Judy's point about your wife's health as she continues to work, clearly without any support from management. Here in the UK scleroderma would likely be covered under the Disability and Equality Act 2010 which means employers have to bend over backwards to enable the person with scleroderma to be able to work. For your wife moving her away from the vent would be a start, limiting the time she spends standing etc. You need to take some advice on this if she continues to work and there's no harm in finding out what happens if she doesn't and you must think this likely or you wouldn't be asking about benefits.

I know that neither you or your wife ever thought...but you're here now.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#6 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 25 May 2012 - 09:18 AM

So glad you have arrived here and shared with us, ConcernedSpouse. More importantly, you have not minced words about your wife's health issues, which we appreciate greatly, as all of us here, are either in the same boat with your wife, or are loved ones, such as yourself.

My symptoms first began displaying themselves in 1991, coming on with a vengence, (not unlike your wife with her symptoms). In one year, I was put through every diagnostic test conceivable, but my diagnoses did not happen until 1995, (which, as you'll find is quite expeditious from many points of view).

My rheumatologist did all of the paperwork necessary to enable me to be on disability, so I was very fortunate, compared to many, as my application was accepted after only 6 weeks.
Your wife has nothing to lose and everything to gain, applying for disability; However, it would be very helpful if her doctor could advocate on your wife's behalf, documenting from a medical point and enhancing her chances of being accepted. Of course, your wife will also have paperwork to do, as well as other requirements deemed necessary by SSD.

*(I want to preface what I am going to post by letting you know I am not medically trained, in any, way, shape or form; What I am about to say is from my personal experience and only feel compelled to share it with you).

It's concerning me, that your wife's health issues are not being treated appropriately. I urge you and your wife to seek treatment for the symptoms she seems to be experiencing, as Scleroderma is a chronic illness and will not go away like a cold, of which I am sure you are both well aware.

Because you posted, it's obvious you already know the seriousness of your wife's illnesses; the next step is to put into motion your reason for posting and that is for your wife to begin the necessary steps to taking care of and helping herself, with you by her side. Knowledge is power and it is SO important that she become her own advocate, where her health is concerned.
You have already taken a step forward to help your wife by joining and posting on this forum. Because you appear to be a very loving husband, I hope you will have a heart-to-heart talk with your wife, (if you haven't yet) and share what you have learned here. It was also suggested that you encourage her to peruse this site to enable her to empower herself, by way of knowledge, that is readily available here.

I also would like you BOTH to know that we are FAMILY here! :emoticons-group-hug: We care, support and are concerned about one another... not only those who have chronic illness, but also the loved ones caring for them.

Please post as often as you feel you want or need to and PLEASE let us know how all of this is going....and by the way, ConcernedSpouse, :you-rock: for being here on your wife's behalf!
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#7 Peggy

Peggy

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 25 May 2012 - 07:37 PM

Scleroderma is listed as a "Compassionate Allowance Disease" and because of that her application should be "fast tracked". If her medical records indicate how this disease impacts her daily life and how difficult it is it will make it much easier for approval. Her doctor should document very well in her medical records how the disease is attacking her body.

I had quit working in July of 2007 due to being unable to work. I applied for disability in November and was approved right away and received my first check in January of 2008. There is a 6 month waiting period so because I had to quit in July I was able to get benefits right away. The Compassionate Allowance issue was just approved at that time so I had faxed this to the social security rep that helped me with my application. He included this with my application and requested that it be fast tracked and it was!

I was and still am so thankful as there is no possible way that I could hold down a job. I was on the road every day as an insurace rep. Now I can't even drive out of town due to the pain meds that I am on and also because of the extreme fatigue I can fall asleep very quickly making driving very dangerous.

I hope some of this helps and I wish you and your wife good luck on your application. It is amazing she is able to work and I can't imagine how she suffers every day with the cold.

#8 Sooty30

Sooty30

    Bronze Member

  • Members
  • PipPip
  • 22 posts

Posted 25 May 2012 - 11:05 PM

We are about to fill the forms out for my husband (we're in the UK.) I have to admit I'm worried he will get turned down, but am going to put the Royal Free down as his specialist along with all the others. We don't think he will return to work and he is looking at being retired due to ill health come about September. We have also applied for a blue badge and just got letter back saying they will contact us for a appointment. I am worried that that day will be a good day, as one day he can walk not like myself but much better for him; but another day just walking 6 metres to the kitchen can make him cough so much he goes dizzy.

Dizziness is something he struggles a lot with right now so hopefully that will help his forms too.

#9 ConcernedSpouse

ConcernedSpouse

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 2 posts

Posted 29 May 2012 - 08:34 PM

I would like to thank each and everyone of you for your input, advice and well wishes! I will definately keep you posted. I wish all of you good health, your support is greatly appreciated!!!!

#10 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 01 June 2012 - 10:53 AM

You are so welcome, ConcernedSpouse! In the meantime, you and your wife will be thought of often!
Yes, we would really appreciate hearing from you (both) if she feels up to it....we would TRULY love to
"meet" her! :)
Until then....
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#11 Evaoptimistic

Evaoptimistic

    Newbie

  • Members
  • Pip
  • 1 posts

Posted 01 June 2012 - 02:03 PM

Hello ConcernedSpouse ,

How I feel for you & your wife. It is sometimes harder to see a loved one suffer than deal with our own problems. Women are notoriously bad at accepting our infirmities so, as I said, I feel for you both.

I understand how your wife feels, I too have Scleroderma & the associated conditions, but she really must take her medication. For a long time I was in denial.. saw it as a weakness.. & poo poo-ed it away. As a result I found out the hard way you must follow all advice from the experts.

Your wife is lucky in that she has an understanding & supportive husband, family support is key.

I'm a new member here so I can offer no practical advice, eg other information, but I find it's always good to know there are more others than we all think that do understand & wish to share.

Warmest thoughts to you both,

optimistic2

#12 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 01 June 2012 - 02:34 PM

Hi Evaoptimistic,

Welcome to these forums!

I'm sorry to hear that you have Scleroderma and it sounds as if you have had to deal with it for quite a while but that you're receiving treatment from a Scleroderma expert..

Do post again and perhaps tell us a bit more about yourself if you would like to.

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#13 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 03 June 2012 - 01:12 PM

Hello Evaoptimistic

Welcome to the forums and I love your username! Denial is a place everyone with scleroderma and their loved ones visits at some point, some stay longer than others!

Medication is key and must be taken regularly, it's not prescribed lightly and taking it is one way we can help ourselves and take some control over our disease. We don't have to lay back and let it trample us, we can medicate! Wow!

You said in your post that you're a new member so can offer no practical advice and that's so not true! You have and are living with scleroderma and that's the only experience you need here!

Take care and keep posting.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#14 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 03 June 2012 - 01:28 PM

Hello Sooty

I said in a previous post to make sure that when you complete the forms you talk about your husband's WORST day not his best. The DWP take into account people's good days when considering terminating benefit so the reverse applies when applying for it.

I am surprised you have an appointment for a blue badge because I got mine straight away. They should take good days into account as well as bad.

I was retired on ill health ground myself back in October 2008 based mainly on the report written by the Royal Free which, I understand, stated I would never work again, totally true but the report had to state it or my application would have been rejected, That I did know having been a manager when at work. It might be worthwhile discussing your husband's pending report so that it clarifies this point. You are perfectly entitled to discuss this with whoever is writing the report.

Bear in mind the retirement process can take same time so don't wait until your husband's sick pay runs out. On that note when his sick pay runs out he will also be entitled to apply for Employment and Support Allowance it's the benefit that used to be called incapacity benefit. Don't be put off by the talk about work as your husband won't be:

"Under Employment and Support Allowance, if you have an illness or disability that severely affects your ability to work, you will get increased financial support. You will not be expected to prepare for a return to work"

Your husband has a serious, debilitating, incurable illness and you both should present it as such DO NOT be "British" about it and understate anything however small, you are not lying nor are you exaggerating.

I hope you get everything you are entitled to as you both deserve it.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)