CrankyGoat

Newly diagnosed - what to say to Employer?

22 posts in this topic

My beautiful wife has been newly diagnosed with Scleroderma, in process of additional testing - including pulmonary function - but Rheumatologist is quite confident of the diagnoses.  We are in process of 'recovering' from this surreal experience and educating ourselves as much as possible.  I'm hoping my wife (Jennifer) will join these forums for additional support, but I'm also careful not to push her and let her go at her own pace - she has always been very proud of her health and fitness, this is a substantive blow to her ego and self identity.

 

We have been wondering how to deal with this in regards to her employment and hoping for suggestions and shared experiences from you guys.  Jennifer is a Pharmacy Manager and, here in Canada at least, the newest trend is the expectation that pharmacists will provide flu shots and travel vaccines regularly.  Problem is, Jennifer no longer trusts her hand coordination for this and is at that point, with the new diagnoses, that she needs to disclose her current circumstances with her employer.  Fortunately, it appears she has an excellent disability package - but not experienced with the process, and not even sure if she qualifies for being on 'disability' as of yet ... but her work environment is not particularly flexible in regards to accommodating her, not because the employer would be unwilling but because of the nature of her work - i.e. standing on concrete floor all day, hand manipulation of small items, repetitive hand movements (which is really starting to bother her), and the air conditioned environment which she finds it triggers the Raynaud's.

 

Any thoughts, suggestions and shared experience on this matter would be greatly appreciated.

 

Warm regards,

 

CrankyGoat (aka Steve)


CrankyGoat - aka Steve

Vancouver Island, BC, Canada

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Hi Steve,

 

I can understand how worrying and upsetting your wife's recent diagnosis of Scleroderma can be and unfortunately I can't advise you regarding her employment and disability entitlements from my own experience as I'm in the UK; however, I've included a link to our Work and Disability page which includes some previous discussion threads on this subject.  We also have another thread on Disability started by one of our members, whose wife has also been diagnosed with Scleroderma which I hope you and your wife will find helpful and interesting.

 

I'm quite sure some of our US members will be able to give you some first hand advice.

 

Kind regards,

 


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Once again, can't thank you enough for the wonderful information on this site - a lot of time and effort has certainly gone into it.  

 

It's always comforting for us to learn we 'are not alone' out there...

 

After a quick view of the links, the question of Disability is truly a tough one.  Because Jennifer works full time and has a good health plan, we are going to see an Employment Lawyer and make sure all our basis are covered before Jennifer discloses her diagnosis to her employer ... better to be safe than sorry.  She most likely can still work for a while but it is the little things that can have big negative results - for example, if the employer tries to accommodate her and reduces her work hours - that will have a direct impact on her long term disability coverage.  

 

Wish we were wealthy and money was not an additional worry - but we are not and life has to be dealt with head on ... one day at a time  - likely going to be our new mantra!

 

 

Warm regards,


CrankyGoat - aka Steve

Vancouver Island, BC, Canada

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Hi Steve,

 

Welcome to Sclero Forums!  I'm sorry that your wife has scleroderma and I send my best wishes to both of you.

 

You are handling things extremely well.  Being proactive like you are in seeking out information and planning ahead will help you both make the absolute best out of a tough situation, and help your relationship continue to flourish.

 

You are spot on about the need to consult an employment lawyer and I hope you can do that immediately, before even a word is whispered to her employer. You both need to know the rules -- as well as the many ways that employers can, and unfortunately often do, thwart them.

 

I hope you can see them in the very near future.  Like maybe yesterday.  You will never regret getting legal help at any point in the disability process, but always, the sooner the better, and generally the initial consultations, which are full of tremendous guidance, are free -- but absolutely priceless.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello Steve

 

Having worsened over 6 months, I ended up off work for about 3 weeks prior to diagnosis. At that point I could hardly walk, was in a lot of pain, exhausted and yet in the face of the diagnosis I still asked when I could go back to work. Now must people when diagnosed with scleroderma don't know what it is, I did and yet I still asked when I could go back to work. The answer in a nutshell was that I never would, I was looking at ill health retirement. 

 

Afterwards my husband and I scoffed at this, went back to the hotel we were staying in (next to hospital) and after I explained to my husband what scleroderma really meant, we cried. That was 7 years ago today (August 23rd) and also happened to be our 10th wedding anniversary! The bottles of champagne and Australian, oaked chardonnay we'd smuggled in with us were use to commiserate rather than celebrate.

 

October 2008 I was officially retired on ill health grounds, never having returned to work. Although an industrial tribunal had to say for sure, my employer considered me disabled in line with the then Disability Discrimination Act meaning they were obligated to do everything possible to enable me to be able to work. As it was a desk job and I couldn't even sit in a chair anymore for longer than 5 minutes because of pain, there was nothing they could do so I had no option. I remember that had part time working been an option it would have affected my pension and as retirement would still have been looming on the horizon it would have been a false economy. It was something to do with how they calculated your pension...based on last years earnings or something...so if my last salary was low...

 

It is very possible your wife will end up retiring on ill health grounds, it is also very possible she won't, some people never work again, some manage part time and some stay as they are. My dear friend who was expected to be long gone (as in dead) by now still works full time. She does work from home the majority of the time and but for that wouldn't have been able to keep going. She delayed telling her employer for a very long time.

 

I do not recommend this approach. Your wife is going to need all the help she can get including any offered by your disability legislation. Systemic scleroderma is considered a disabling illness in most countries so her employer might have to help her out. Of course if they can't you might want to get a pension forecast so you know what's what. As I said earlier this all depends on how ill your wife is, she might be able to work for a few more months, years or only days so get as much information as you can now to help you make the best decision you can.

 

Finally, I spent years at the gym, then jogging as I was determined NOT to end up like Ma, first heart attack before 50 and debilitated by heart disease. Have a read of my blog "How could you possibly fail me?"

 

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)

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Crankygoat, so glad you found this site.  It has been my best support since I like your wife was diagnosed.  The messages above are from the heart, they have helped me like they will help you and her.

 

Does your wife use the computer?  If so there are many chat sessions here that helped me immensely.  Though I am in the US I have found support from chats in other countries that suited my schedule better :)

 

I shudder when I think about when I was diagnosed, all the unanswered questions and waiting periods for new test results....  I am glad you got through the diagnosis part already, that was really difficult for me.  Here on out may be easier, find a treatment plan, and keep on getting the maintenance tests, and maybe lifestyle adjustments to accommodate her since she moves slower.

 

I am not familiar about disability in CA but in the US it's better to get started earlier than later.  If it were me, I would not say a word about it to my employer.  

 

Many women live long fulfilling lives with diffuse sclero, but unfortunately it can strike some quickly, so I wouldn't wait.  My rheumatologist has patients that have functioned normally most their lives which is wonderful, though I don't function like I used to.  Hard to say how it will affect her so prepare for it.  

 

Look into disability, consider your bills or how to trim them.  We actually moved into a different home without stairs and a smaller mortgage.  The freedom from money stress is priceless after we lost my income.

 

Oh yes, get used to wearing summer clothes in the dead of winter to keep her Raynauds at bay because the house is so warm despite the electric blankets and extra layers of clothing she wears :)!

 

Please update us.


Diffuse Scleroderma Diagnosed March 2009

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Thanks to everyone for your wonderful thoughts and replies - we indeed are trying to tackle this 'head on' and this site is proving invaluable.  My wife plans to join these forums but 'not ready yet' as her diagnosis is still settling in - plus she states she wants to ensure the symptoms she describes and presents to Rheumatologist are 'her own'  and not what she has learned from online sites and research.  

 

We do have a meeting with an employment lawyer set up asap, and aware both family physician and Rheumatologist need to be in agreement regarding disability status - which does not appear to be an issue, as we are blessed with a wonderful family physician who has been responsive and proactive right from the start.

 

As for housing, we have already discussed long term needs and are in agreement that a smaller, cosier "cabin" with less maintenance both for the house and surrounding property would be more appropriate. We have decided to wait and see how long she can maintain employment, and if / when she goes on disability (sounds like "when" is a given) we plan to pursue the cosy cabin option - with an efficient wood stove to make it super warm for her!

 

One question - are stairs likely to pose a problem?  It doesn't seem so, and I have not seen too many comments in the forums here with regards to stairs - but would like opinions.


CrankyGoat - aka Steve

Vancouver Island, BC, Canada

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Steve,

Your comment about stairs prompted me to offer you a belated welcome and tell you what I think about stairs.   In a few words, stay away from them :sorry: .

Although I should probably qualify that feeling a bit more.   I have had a certain amount of trouble with stairs for many many years.    Partly because  of me I suspect but maybe not.   I can count my journey with Scleroderma back to 1966 and as well as the Raynauds I started to have trouble climbing.   We were young and trying to see the world and although my travelling companions could go almost everywhere I was not able to keep up with them on stairs or hills.

 

Two years ago we were obliged to sell a lovely home by the sea partly because I could no longer manage  a two storey house on an interesting sloping plot of land.   Now we have a flat plot and a rambling home with no stairs that I have to negotiate.   There are stairs down to the sea which I can walk down but then I have to take a short walk along the beach to walk up a flatter path.   My biggest problem is extreme fatigue and weakness but I could imagine that some of the people with skin and joint involvement would avoid stairs just like I do.

 

When we first came here in 2012 I could do some gardening but now I do almost none, if I kneel down I can't get up without help and I don't even have any Arthritis or joint involvement, it is simply weakness.  

 

Don't make any decisions at this stage about what you will or won't be able to do in the future.   I know you are healthy but one day you will be the caregiver and coping with extra hurdles is something you may not wish to do.

 

Best wishes for your future,  make the most of what you both can do but look for the simple and easy way.

Judyt

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Hello Steve

 

The answer is they may in time. I am in the process of searching for a stair lift as I currently go up on my hands and knees and down on my butt, good thing it's well padded! I even struggle with the porch step getting into the house! I am in year 7 and my mobility has deteriorated year on year, I use a powered wheelchair downstairs and a self propelled one upstairs. I also have a commode next to my bed and one downstairs. I can walk a few paces but that's it.

 

My dear friend with scleroderma has a stair lift already, she has been diagnosed 3 or 4 years? She does not use a wheelchair and is able to walk.

 

What's the difference between us, the cause of our inability to use stairs. Mine is directly scleroderma, my dear friends is scleroderma and myositis. We both have fixed ankle joints and tight calves but this makes stairs difficult not impossible.

 

Scleroderma has many associated diseases which can bring their own challenges and even affect mobility, it's common to have more than one autoimmune disease but it's not a given.

 

Ten years ago we moved from a small bungalow (one storey) to a 2 story house with converted loft, I have difficulty with the stairs and can no longer access the converted loft. However, the house is big enough to accommodate the powered chair whereas the bungalow was not and although I can use a self propelled chair, I can only use it briefly in small spaces so it's swings and round abouts.

 

If we were to move again and consider it our final move we would avoid stairs if possible and even if I could walk again we would still avoid stairs. Scleroderma can wax and wane so even if  one day I could walk no one can say I'd stay that way. Of course I know nothing of your wife's mobility and only you two can decide, I just hope this information helps.

 

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)

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Hi All,

 

This talk about mobility or lack of it prompts me to tell you about my newest acquisition.  It is a battery operated scooter.   No it is not a 'golf cart' it is definitely a scooter.   Looks more like a racy little machine than anything else.   Anyway I just love it.   It breaks down into 5 sections.   Chassis and handlebars, battery, rear motor, seat and dear little basket which is so small I don't put it on.   The whole thing goes into the boot of the car so when we get anywhere out it comes and in a minute I am away.

 

I have to qualify the portability a bit, because I can't handle it myself.   The battery and rear motor are each just too heavy for me but I don't usually want to use it when I am by myself because I only go easy places I can walk to from the car.

 

I used my scooter at the supermarket for the first time this week.   Ian usually does the shopping but sometimes you need to go yourself to get the things you forgot to put on the list or those which are too specific to describe sometimes.   It was just great.   I got back to the car feeling I had achieved something for once.

 

Best wishes

Judyt

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Hello Steve

 

The answer is they may in time. I am in the process of searching for a stair lift as I currently go up on my hands and knees and down on my butt, good thing it's well padded! I even struggle with the porch step getting into the house! I am in year 7 and my mobility has deteriorated year on year, I use a powered wheelchair downstairs and a self propelled one upstairs. I also have a commode next to my bed and one downstairs. I can walk a few paces but that's it.

 

My dear friend with scleroderma has a stair lift already, she has been diagnosed 3 or 4 years? She does not use a wheelchair and is able to walk.

 

What's the difference between us, the cause of our inability to use stairs. Mine is directly scleroderma, my dear friends is scleroderma and myositis. We both have fixed ankle joints and tight calves but this makes stairs difficult not impossible.

 

Scleroderma has many associated diseases which can bring their own challenges and even affect mobility, it's common to have more than one autoimmune disease but it's not a given.

 

Ten years ago we moved from a small bungalow (one storey) to a 2 story house with converted loft, I have difficulty with the stairs and can no longer access the converted loft. However, the house is big enough to accommodate the powered chair whereas the bungalow was not and although I can use a self propelled chair, I can only use it briefly in small spaces so it's swings and round abouts.

 

If we were to move again and consider it our final move we would avoid stairs if possible and even if I could walk again we would still avoid stairs. Scleroderma can wax and wane so even if  one day I could walk no one can say I'd stay that way. Of course I know nothing of your wife's mobility and only you two can decide, I just hope this information helps.

 

Take care.

 

 

 

Good point Amanda, no one can predict mobility.  I hope Jennifer will retain her mobility.  All I can say is that I had a beautiful walk-out basement that led to my back yard and I was rarely able to visit for the last several years.  The stairs were difficult due to fatigue, muscle weakness and knee pain.  That home also had 3 steps leading to our garage (our main entryway), I injured myself several times falling UP the stairs before I knew what was wrong.  The steps had tile over concrete, WOW that hurt!  I was too embarrassed one day when my husband returned home to admit to him that the chocolate ice cream shake stain on the door was actually my coffee with cream in it splattered on the door.


Diffuse Scleroderma Diagnosed March 2009

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Thanks guys, appreciate all your thoughts and perspectives on this - particularly regarding issues around stairs and mobility.  Currently, Jennifer finds her six or eight hour shifts at work are not too bad, but the ten hour ones are brutal... very tired by end of day, and affects her sleep pattern that night (joints feel inflamed) and consequently impacts her following day!  

 

Employer is not fully aware of what is going on yet, but IS aware that Jennifer is facing some chronic health concerns of which she is currently being tested for.  They have been very responsive in a positive manner, for example, Jennifer was worried about upcoming flu season as she was expected to give flu vaccine clinics (new trend for Pharmacists here in Canada).  Problem is, that often means giving anywhere from 80 to 200 injections a day during the peak flu season!  Her hands simply could not tolerate the repetitive movement - and her employer stated it was not a problem and they would simply contract someone to come in during the flu clinics - totally awesome on their part.

 

We are connecting with a lawyer next week to explore all Jennifer's options and best way to handle the situation if (or when) she is at the stage she can no longer maintain work. Jennifer also suggested that we review our Wills and include an Advanced Directive regarding health care choices - a tough topic to think about, but she is right in that it is important to ensure all precautions are in place and better to prepare for 'worse case scenarios' well ahead of time.

 

In regards to assisted mobility, a friend of ours is a custom bicycle manufacturer and he had made an electric assisted bicycle as well as a electric assisted tricycle that would be a very cool option for Jennifer if needed down the road ... 


CrankyGoat - aka Steve

Vancouver Island, BC, Canada

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Hi Steve,

 

I'm really pleased to hear that Jennifer's employers have been so helpful and thoughtful towards her. It must make things a little less stressful for you both, if you feel that they will be sympathetic and it's one less thing to worry about.

 

Good for both of you, for being so proactive with this disease!! :bravo:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Well, thought it may be helpful to provide an update - Jennifer's symptoms seem to be developing fairly aggressively, the doctors are stating to expect that for the next eight to twelve months and then hope for a plateau of sorts?  Regardless, she is now at the stage where work is becoming intolerable - exhausts her too much, very fatigued and increased shortness of breath after a couple days.  

 

We spoke with a lawyer - he was helpful and very honest, basically stating to 'save our money' with legal fees until we know there may be a problem.  As long as we have good documentation, he did not anticipate any significant issues with regards to either Short Term or Long Term Disability.  Jennifer has been very good with documentation - including maintaining a symptom timeline; history of medical appointments; what prescriptions have been tried and what was or was not successful.  Also started with physiotherapy (thanks to some of the video link suggestions from this forum) and her physiotherapist is great - not familiar with Scleroderma but keen to learn and already contacted a few specialist clinics for suggestions regarding a physical therapy regime.

 

So - Jennifer decided to fully disclose to her employer and look at going on Short Term Disability by the end of this week - so far, nothing but absolute support and co-operative responses from the employer.  Jennifer said it is amazing how much of a weight that has lifted off her shoulders.  It is remarkable that in early June of this year she was still running half marathons and had a great career path ahead of her -  now she has a "health care team" and looking at Short Term Disability with likelihood it will progress into Long Term Disability ...in less than three months!  At least she has a very supportive health care team - but the Rheumatologist is so busy her next appointment is not until late November, very frustrating...


CrankyGoat - aka Steve

Vancouver Island, BC, Canada

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Hi Steve,

 

I am sorry to hear that Jennifer's symptoms have worsened so rapidly; it must be extremely worrying for you both and it's a good thing that she does have such a supportive employer and health team.

 

I expect Amanda will be along with more help and advice for you and I know her symptoms progressed fairly rapidly as well, including the dreadful fatigue she suffered whilst working (and still suffers now!)  I can understand Jennifer's frustration, as I ran a half marathon in October 2008, prior to being diagnosed in July 2009, by which time my oxygen/carbon dioxide diffusion rate had deteriorated to 48%, so I certainly wasn't going to be running any more half marathons! I've been lucky, in as much as the disease has stablised now and apart from the odd flare if I encounter a stressful situation, I'm hoping that it may continue like that for many years.

 

By the way, what a lovely photo of Jennifer and your dog! :wub:

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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