CrankyGoat

Newly diagnosed - what to say to Employer?

22 posts in this topic

Hello Crankygoat

 

Firstly, what I am going to say is not in anyway meant to be negative, rather realistic and I am still not convinced about plateaus. Nevertheless, I have never heard of a plateau after 12-18 months, the doctor was kidding right? When I last discussed this with my recognised European scleroderma expert, he said that after 3-5 years people's symptoms can stop progressing, otherwise known as a plateau, but there is no guarantee that symptoms, once stopped will stay so. At that point when progression stops, some people improve, some people stay stuck as they are, I am one of the latter, I think! 

 

Here's the thing, despite a supposed plateau, I can do less than this time last year, less than this time 6 months ago. It's getting harder to find outdoor footwear I can tolerate and more often than not I go out in slipper boots. My ankles are fixed because of tight skin, unfortunately my right foot didn't "fix" straight but rather turns inward and this turning in has become more pronounced with the passing of time. You see, although my scleroderma might not be progressing, the damage it has done to my body continues and that continuation takes its toll.

 

I am realistic about my disease and the restrictions it places upon me and even the impact it has on my husband but I am not defeated or defeatist, neither is he. It is important to be realistic but it doesn't stand to reason that this means being negative, I would not have bought a wheelchair if I had not accepted my inability to walk and I would not have my powered wheelchair but for firstly buying a manual one. I wouldn't be awaiting a stair lift if I had not accepted my inability to use the stairs. Okay, it may have taken me a real, long time to accept the piggin' obvious but hey! 

 

I am sorry your wife is now on disability and that her disease is moving so quickly. I hope your wife can do whatever she can for as long as she can and whatever damage scleroderma does might improve when she plateaus and that it might be an early one.

 

Glad you found the videos helpful.

 

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 Steve,

I'm really late joining the thread, sorry! First let me assure you and your wife that there is life after the diagnosis; this year will mark my 8th anniversary and I hope for many more years.

 

My daughter is also a pharmacist, so I m pretty familiar with the working conditions. It's my understanding that a pharmacist can't be forced to give injections although they may be required to undergo the training. I would simply say I wasn't comfortable and didn't wish to risk the liability issues.

 

Standing on concrete floors - ouch! My recommendation is for her to acquire some of the cushioned, non-slip mats designed for chefs, etc. They aren't pretty, but they really help. I have them everywhere I have to stand: in front of every sink, in front of the washer/dryer, etc.

 

Repetitive hand movements: maybe the supportive elastic braces designed for carpal tunnel might help. Shelley can give you great advice on preserving hand function.

 

And totally off topic, I seem to recall you were concerned about travel. Well, in the last 4 years, my husband and I and my portable oxygen concentrator have been to Australia, Swizerland, and England, plus tent camped around the USA. Honestly, the only thing that has slowed us down has been the kenneling costs for our 2 border collies!

 

For me, the diagnosis of scleroderma has been a great gift. I take better care of myself and I appreciate every moment of every day more. Even though my disease is progressing, I am resolutely optimistic. I don't sweat the small stuff. I hope you and your wife can find your way forward.

 

Best wishes, always.

Jeannie


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Thank you everyone, your responses have been both informative and uplifting.  Sorry I have taken a while to respond back - things are moving quickly in our lives.  We live on a remote Island off Vancouver Island, which we dearly love but it is now not very practical for Jennifer's current needs.  Having to 'wait for a ferry' every time she attends a specialist appointment; physiotherapy; and related has gotten very tiresome in itself.  As such, we have decided to move at least temporarily to central Vancouver Island in a community that is 'easily walkable' to all amenities and still has tons of park space and, most importantly, easy access to Vancouver where Jennifer is being referred to their specialized Scleroderma Clinic at St. Paul's Hospital.

 

Jennifer is still waiting for her pulmonary function test and echocardiogram, frustrating that it takes over a month to get in when it seems like Jennifer really needs a good baseline right NOW!  The one thing we are learning through all this is how to manoeuvre through our healthcare system - we are fortunate in that it is a good system but stretched to the max with increasing wait times.  It is very fortunate we have a proactive family physician who is highly supportive, would be totally lost without that...

 

Jennifer is now officially on Short Term Disability, has been off about a week now and finds "rest and relaxing" is not really all that beneficial - still aches and new pains in weird locations, now it is her knees that are bothersome.  She does have an enthusiastic physiotherapist, hopefully that helps a bit. Ah, Life "Is What It Is" but truly seems so unfair sometimes.

 

Jeannie, as with most of you here in the forums, your optimism is great and fortunately Jennifer is also both optimistic and determined  -  she is learning not to sweat the small stuff and, more important for her, is learning to slow down and take life a little slower.

 

Warmest regards to all of you.


CrankyGoat - aka Steve

Vancouver Island, BC, Canada

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Hello Jeannie

 

Long time no everything! I was so encouraged to read that you think of scleroderma as a gift but not so encouraged to read that your illness is progressing. How long have you had scleroderma now? Where's your plateau, same place as mine maybe?

 

 

It's always such a thrill to hear from you.

 

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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Just an update - my wife recieved full 'approval' from her insurance company for short-term disability status. It was kind of expected, however a relief nevertheless and one more hurdle that's been completed. It is also expected that she may never be in a position to go back to work - but we still need to adhere to all the "rules" imposed by the insurance company and follow their 'treatment protocols' ... as if they actually know anything about Diffuse Scleroderma! Ah well, c'est la vie...

 

Jennifer has been off work a full week now and although she notes no particular change one way or another ... I definitely notice a beneficial change. It is like a weight has been lifted off her shoulders, without the responsibility of work she can now truly focus on herself and dealing with the symptoms, aches and pains.

 

Very important to note, critical to read your insurance coverage if you are employed and newly diagnosed… As there is specific timelines that needs to be addressed regarding disclosure. Failure to do so - within thirty days in my wife's case, could mean full rejection of ANY disability coverage! Absolutely crazy... But the "rules" nevertheless. At least in the Canadian insurance corporate arena anyway. We were fortunate in that I have a legal background, would be a clause that is easy to overlook when dealing with the trauma of a diagnosis of this nature...


CrankyGoat - aka Steve

Vancouver Island, BC, Canada

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Hi Steve,

 

Thanks so much for the update and I'm pleased to hear that Jennifer's received full approval from her insurance company for short-term disability status. Certainly the less stress she has suffer over her insurance and work situation the better it will be for her.

 

Thanks also for the useful advice regarding her insurance claim for disability coverage.

 

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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Hello Steve

 

Unfortunately there are all sorts of issues to negotiate and at the worst time in a person's life. It can be disability issues, insurance issues, and every other issue under the sun.

 

I'm so glad things are working out for you both.

 

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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