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Posts posted by CrankyGoat

  1. Well, a quick update - we are moving off our remote Island as of next weekend AND the new minivan is on it's way.  I'm a bit sad giving up my nice 4x4 truck but the van is truly much more versatile for our current needs.  Hard to believe, but we are excited about the minivan - it's the new Toyota Sienna and this version has a "lounge chair" in the 2nd row that Jennifer finds very comfortable because it takes the weight off her leg joints and makes her feel less fatigued after a 'bad' day.  Plus, it will easily fit bicycles so travelling short day trips will be much easier for Jennifer (and our big goofy dog still has his own spot as well).  When you stop and think about it, it is remarkable how adaptive we (as a collective whole) can be - now that Jennifer has been off work for a couple weeks, she finds the need to develop some sort of routine in her daily activities.  Despite not having the worries and stress of work, she still fatigues easily and sometimes at odd times - has now become a 'napper' when she never did before ... our dog loves it, he has a 'napping' buddy and couldn't be happier!  


    Jennifer has pulmonary function testing next week and then a follow-up with a more experienced Rheumatologist - she's hoping to get some clarity with regards to diagnosis and what she can / should not do in regards to exercising, diet, etcetera.  For example, is it okay for her to do light, repetitive weight bearing workouts so she can maintain her muscle tone - or will that damage her joints and exacerbate her fatigue?  IS bicycle riding a reasonable consideration - of so, bonus as we have an exercise we can easily do together.  How about rowing - we ruled kayaking out because her balance is off a bit and the dripping water plays havoc with her Raynaud's even with neoprene gloves - but rowing is a different beast and a fantastic low impact exercise ... hoping the Rheumatologist agrees.  Ah well, it should be an interesting few weeks to say the least :emoticon-dont-know:


    Not sure if it will work, but I've added two photos - one of Jennifer and our Mutt giving her a kiss; and one of our beloved Quadra Island that we will be leaving next week to live in more practical accommodations closer to Jennifer's specialist and medical services ... at least we can still visit Quadra Island regularly.  Who knows, maybe we will be fortunate enough to move back there someday ... a good dream to wish for anyway.  


    Warm regards everyone - as I am merely a supportive spouse and not one diagnosed with Scleroderma, I'm thinking it may be more appropriate for me to blog my thoughts, concerns and frustrations and stop using forum space.  Problem is, I'm not sure how to get a blog started?  Open to any assistance on that matter...

  2. 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...

  3. Thanks Judyt - your kind and thoughtful words brought tears to my eyes. Yes, we will definitely miss our beloved Quadra Island and hope to have to opportunity to revisit regularly. But life goes on, irregardless of ones own problems, and we have been together for nearly thirty years ... so we are treating Jennifer's diagnosis as simply 'another bump in the road' and making do as best we can.

    Jennifer received official approval from the insurance company regarding disability - never any real doubt but a relief nevertheless. Another hurdle we have dealt with. Now planning to trade our two vehicles in a get a Seinna Minivan - more comfortable for both Jennifer and our large dog to travel to specialist appointments - plus we can convert to a part time camper and do shorter  'adventure trips' ... plan to enjoy life together without too much disruption.

  4. Thanks for the great responses - also,Scareysarah, very good hearing from a fellow Canadian  :emoticons-clap: 

    Jennifer totally relates to the fatigue issues - and it seems to affect her without a lot of rhyme or reason, as she can feel equally fatigued from simply staying at home and reading a book.  She is trying to develop a daily "routine" and thankful for having a dog in our household - our German Shepherd has 'stepped up to the plate" and has become my wife's caretaker and walking companion big time.  He will even get up in the middle of the night to check on how my wife is sleeping, give her a kiss on the cheek with his nose and quietly go back to bed ... our animal companions are truly wonderful friends.  In regards to the 'daily routine' it is proving to be a challenge, mainly because everything is so unpredictable right now in regards to Jennifer's presenting symptoms - last week was the knees, last night was the wrists... very frustrating for her.


    With regards to travel, we have made the decision to leave our small, remote island off Vancouver Island and move to a more central location that allows easy day trips to Vancouver, Victoria or a variety of parks and light hiking trails.  It also allows easier access to any specialist / medical appointments.  Once settled in, we can then tackle what we want to try out in regards to travel plans - because Jennifer is a relatively newbie with Scleroderma, her physician advises her to stick around for the next six months and 'wait and see' where things develop - and she is still waiting for a variety of baseline tests, such as pulmonary function and echocardio, so "patience" has become our new mantra for many things right now.  


    Warmest regards

  5. 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.

  6. 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...

  7. 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 ... 

  8. Thanks Kathy, Jennifer tends to always try and 'push herself' and is finding out the hard way that is not a smart thing to do - instead of our usual eight hour mountain hikes (we did a 20 km hike a few weeks ago) Jennifer is finding a solid four hour hike is ideal.  It allows her to stretch out and work her muscles but does not fatigue her overly much, nor does it impact her sleep.


    We are exploring small Class B Campervan options for next spring - trade in our truck and will allow Jennifer to travel in comfort (heated seats and dual climate control - big deal now with her Raynaud's) and can take a nap while we are travelling if needed.  As we live on a small island and have to commute by ferry regularly, we need something that can easily go on the ferries regularly without any hassles - fortunately, there are a few good options available.  We have not been cycling for a while (mainly because we go everywhere with our dog, and unable to cycle with him) but plan to explore it again and see if that low impact aerobic exercise is a good alternative to running (which she misses greatly).

  9. This past weekend I tried the California Plank Salmon, Avocado and Mango Salad - it was very tasty but the following night I varied the dish and had Plank Salmon with Sticky Chili Balsamic glaze over a baby spring salad mix with pomegranate dressing topped with avocado, strawberries, blueberries, red onion and black olives --- and THAT was truly delicious.


    Jennifer has not had pasta for a while, and wants to give it a try - so plan to make a grilled scallop and mushroom fettuccine this weekend with blueberry mead instead of wine ...  a delightful treat.


    Ah, it's truly those 'little things' in life that can still bring us joy ... thanks goodness for that  :emoticons-group-hug:

  10. 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.

  11. 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,

  12. Thanks for the links, Jo, very much appreciated. The Rheumatologist basically gave Jennifer Pantoprazole (Pantaloc) and said eat a balanced, healthy diet and do not lose any more weight - as she had lost about eight pounds due to acid indigestion.  However, Jennifer has found certain foods really impact her, and appear to promote joint inflammation - these include almonds, tomatoes, peanuts, cashews, cheese / dairy products but THANKFULLY for her, she is still able to enjoy wine and chocolate - her two essential food ingredients :yes:  

  13. 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)

  14. This is great information, and very inspirational - something we very much needed right now.  I can’t thank you enough for both your kind words and thoughtful response.  We are fortunate that our family physician is very proactive and managed to connect my wife with a good Rheumatologist.  We live on a small island off Vancouver Island but are close to Vancouver, BC which apparently has a well respected Scleroderma Clinic which we are hoping to get involved with asap.  My wife is scheduled to get a pulmonary function test soon, looking at getting “baseline” tests for everything under the sun right now.  She also has full blown Raynaud’s Phenomenon - so looking at merino wool layering and plan for a few “hot and sunny” vacations in the near future. I totally agree with your great attitude of "do it while you can because you never know when you can't." It is so very, very true...


    Warm regards,


    CrankyGoat (aka Steve)

  15. My wife has just been diagnosed with Scleroderma (Three Weeks Ago - July 2014) and it appears will never be a 'runner' again; has to be careful what food she now eats; and our mountain climbing is tempered by how well she is breathing that day.  It truly breaks my heart and frustrates me to no end - I'm here because I want to learn more; learn how to support and comfort her; learn how to make her comfortable; and, most importantly, learn how we can 'make the best of it' and continue enjoying life to the fullest!


    She is a Foodie for sure, currently trying the AutoImmune Diet which advises to cut out all 'nightshade' vegetables - most of which is what she loves eating the most, such as fresh tomatoes, peppers, etc.  She has so far discovered that tomatoes and almonds, of all things, really cause a reaction and increases heartburn / acid reflux big time.  However, many other items seem 'safe' and still allows a great variety of recipe options to play around with.


    What we have plenty off, and which we both love is Sockeye Salmon - truly a favourite fish of ours and when grilled on a cedar plank in the BBQ is a food that rivals all food  :woohoo:


    I stumbled upon this forum but did not look like any recent posts?  Is the Sclero Kitchen still active? If so, any regular recipe swapping?  The 'little things' really do count and I plan to start a new habit with my wife, I have promised her to discover, cook, AND clean-up a new recipe every week-end.  There is a great recipe on  Foodily.com and we plan to start a Recipe List dedicated to Scleroderma friendly ingredients (if there is even such a thing, as I said - my wife was just recently diagnosed).  If interested in the website just send me a personal message regarding same.


    My first official meal planned for this new ritual of ours is a variation of the California Grilled Chicken, Avocado and Mango Salad - I'm replacing the chicken with cedar plank grilled sockeye salmon.


    Here's a link to my album on Recipe Ideas.

  16. Hello folks, I am a definite newbie here so will first explain who I am and then ask a few questions which I am hoping someone could answer. I truly live a 'good life' out here on the pacific west coast, often hiking in the mountains of British Columbia with my wife and our ten year old german shepherd. My wife, who truly is my best friend, and I have been happily married for well over thirty years! I sincerely want to enjoy another active and adventurous quarter century with her.  She is a vibrant 'lover of life' - top in her class marathon runner; a true foodie who enjoys gourmet meals and fine wine; and my favourite mountain hiking partner.

    However, she has just been diagnosed with Scleroderma (three weeks ago - July 2014) and it appears will never be a 'runner' again; has to be careful what food she now eats; and our mountain climbing is tempered by how well she is breathing that day.  It truly breaks my heart and frustrates me to no end, as I want to be able to "fix" this for her and I am unable to do so - I'm here because I want to learn more; learn how to support and comfort her; learn how to make her as comfortable as possible; and, most importantly, learn how we can 'make the best of it' and continue enjoying life to the fullest!
    So, one of my first question is this, can you travel with Scleroderma?  I mean via airplane, as I'm worried the air pressure changes may impact her negatively?  Also, is travel insurance now going to be an issue?  Anyone from Canada with experience in this - let me know of any good travel insurance companies you would recommended.
    I have many, many other questions - but will take it one step at a time, my wife is a very proud person and I know this has hit her 'ego' very hard - this time last year she won first place in a rugged cross country half marathon and was so very, very proud of that accomplishment ... now she is told that she will likely never be a 'runner' again, very tough for her to absorb and to the both of us this diagnosis seems so surreal and absolutely unfair ... as I'm sure many of you, if not all, had felt exactly the same way when you or your loved one was first diagnosed.
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