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Travelling with Scleroderma?

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#1 CrankyGoat

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Posted 21 August 2014 - 06:15 PM

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.

CrankyGoat - aka Steve

Vancouver Island, BC, Canada


#2 miocean

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Posted 22 August 2014 - 03:34 AM

Hello CrankyGoat,

It does sound like you are living the good life and I want to reassure you that it can continue even with your wife's diagnosis. You will have to change and adapt a little but with your support, your wife's winning attitude, current physical fitness, and the strides that have been made in treating scleroderma you can still travel.

 

For you, a little background on me. I was a recreational runner, doing 3 miles before going to a very active job as an art teacher and an occasional 5k. I swam a mile in my beautiful Atlantic ocean every day in the summer. My husband and I wilderness camped in the North Woods of Maine and did some mountain climbing. Then BOOM scleroderma: sudden onset with renal failure. Suddenly I was on soul sucking dialysis 3 times a week, I had to retire on disability, I could no longer hold a paint brush, could barely write my name.

 

Even on dialysis I traveled by air within the United States. My center set up dialysis at a center where I was going. I arranged for wheelchair assistance at the airport and that is something I would definitely recommend. I did feel a little foolish at first because to look at me there wasn't anything visibly wrong but there was no way I could walk the distance to the gates in our large airports. I didn't travel out of the country because insurance did not cover dialysis there.

 

I received a kidney transplant after 5 1/2 years and back I went to international traveling as we love Mexico. I now have pulmonary hypertension and use oxygen on exertion. I have a high tech portable oxygen converter that is FAA approved. It also has a car charger. I bought the backpack for it which is heavy but makes everything easier. We go to Mexico for a few weeks every year and always get travel insurance. I get the one throughout the airline although there are other policies that give more extensive coverage that you can look into online. We go to an area with hospitals and good medical care and I don't do high risk activities so the basic one works for me. I did have to use it once as I got an infection before the trip and wasn't able to go because of twice daily infusions. After filling out a form, everything was taken care of for the flight. We have done many long distance road trips. I did need to use the oxygen all the time when we were in a high altitude area at the Grand Canyon.

 

You will find you learn wayyyy more than you want to about things. For instance, your wife's pulmonary function tests and a 6 minute walk test will give you an idea of her lung function and whether she needs oxygen. I hope you have a scleroderma specialist and the sooner the better. Here is a link to the U.S. ones. If there are none in Canada it would be worth the trip to one in California. Make sure you keep a copy of every lab, test, scans, and doctor's notes if you can get them.

 

I think that is enough for now. There are so many people here to help you and support you. My husband has been incredible, as I know you will be. As he says, he "chops, shops and mops." He has also never complained about how his life has changed. It's not easy being the caregiver. Your wife has a lot going for her. She is going into this in great physical condition and she has you. Yes, things will change. I can no longer swim a mile in the ocean but on a calm day I can go in. I can't run but I can walk. I am grateful for the things I can do. And my attitude is do it while you can because you never know when you can't. And that doesn't apply just to people with scleroderma, everyone should have that attitude. 

 

Please message me if your wife wants more information or has questions. Best wishes to you both!

 

miocean

 

 

 

 


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#3 CrankyGoat

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Posted 22 August 2014 - 04:01 AM

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)


CrankyGoat - aka Steve

Vancouver Island, BC, Canada


#4 Joelf

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Posted 22 August 2014 - 04:10 AM

Hi Crankygoat,

 

Welcome to these forums!

 

I'm very sorry to hear of your wife's recent diagnosis; it must have been a dreadful shock for both of you and I can understand how worried and concerned you're feeling. Like your wife, pre Scleroderma I was very active and ran half marathons (actually the fact that I was so fit helped me a lot in the early diagnosis of my symptoms and thus the success of the treatment I received).

 

However, as Miocean has said in her helpful and informative post, you and your wife can still enjoy a good quality of life, despite her Scleroderma diagnosis. It sounds as if both of you have a good attitude, which certainly helps and I know you will support her as much as you can, like Miocean's husband and indeed my own long suffering husband! ;)

 

To give you some more information, I've included a link to our medical page on Emotional Adjustment, which includes one of Amanda's super videos and also a link to another thread we have on Flying with Scleroderma and Pulmonary Fibrosis. I hope that you'll find that helpful and informative.

 

I'm afraid that I can't add anything to Miocean's post regarding travel insurance, as I'm in the UK, but hopefully some of our Canadian members may be able to give you some first hand advice, via a personal message.

 

Now you've found our forums and joined our community, please do keep posting with any worries and questions you may have and we will do our best to help, support and encourage you and your wife.

 

Kind regards,


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#5 CrankyGoat

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Posted 22 August 2014 - 06:03 AM

Thanks Jo, especially for the links - it is nice to see how active these forums are and there is an abundance of info available ... having the right links to find the info I am looking for is a great help.

 

Much appreciated,

 

CrankyGoat (aka Steve)


CrankyGoat - aka Steve

Vancouver Island, BC, Canada


#6 Amanda Thorpe

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Posted 23 August 2014 - 01:47 PM

Hello Steve

 

Apart from what Jo has mentioned I'd include what's probably the biggest consideration...how your wife feels on any given day! This will vary wildly with scleroderma, the only thing you can say for sure is the more you do one day the tireder you'll be the next. Our bodies demand an account from us when we exert them and the only currency accepted is tomorrow. 

 

I don't know your wife's level of fatigue only that if she has scleroderma she has it. Fatigue cannot be ignored or "pushed through" and trying either is guaranteed to land you flat on your back for weeks. Scleroderma fatigue is like the bride's big, loud, uninvited, drunken uncle, who gatecrashes the wedding then demands to be accommodated...in the house. Have a look at our fatigue video for a better understanding of it.

 

If your wife feels relatively well now then this may be your opportunity and as Miocean suggests, make the most of it.

 

I meant to say to you that we have a caregiver blog, written by my husband. I know the last blog was written a crazy long time ago but I am assured one is on its way any day now...

 

Take care.


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#7 CrankyGoat

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Posted 25 August 2014 - 07:01 AM

Thanks Amanda, especially for the link to the caregiver blog ... very much appreciated. 


CrankyGoat - aka Steve

Vancouver Island, BC, Canada


#8 Kathy D

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Posted 25 August 2014 - 07:30 PM

How did I miss these fantastic links!?!  Oh yes, I was busy in pregnancy remission and learning how to be a mother for the first time at an older age....  Thank you, like Steve said, they were quite informative.

 

Jo, I really needed someone to tell my I am not "lazy" as that was a dirty word in my upbringing.  The Fatigue link has helped me with psychological guilt.

 

Amanda, my dear husband goes through all the stages your husband mentioned in his blog.  I am thrilled he took the time to write it!  Please tell him thank you.


Diffuse Scleroderma Diagnosed March 2009

#9 Amanda Thorpe

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Posted 26 August 2014 - 01:44 PM

Thanks Kathy, I will, along with write another! Can't imagine why he's so busy?!


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#10 Kathy D

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Posted 26 August 2014 - 04:39 PM

Apologize I neglected to mention.  I used to travel for business several times a year.  The fatigue is what ended that, I could not safely drive a few hours to airport, then do an hour walking through the airport, then repeat on arrival at my destination.  My fatigue made me useless the next day when I needed to perform.  Your wife may do better, try and see!  



 


Diffuse Scleroderma Diagnosed March 2009

#11 CrankyGoat

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Posted 27 August 2014 - 08:58 AM

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).


CrankyGoat - aka Steve

Vancouver Island, BC, Canada


#12 Scareysarah

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Posted 05 September 2014 - 04:22 PM

Dear CrankyGoat,

I have had Limited Scleroderma with all of the CREST symptoms for at least 20 years. I live in Ontario, Canada, and I travel quite often. Never have I had issues with flights, but my husband makes sure I don't push myself too hard. Limited Scleroderma does not present as many problems a Diffuse Scleroderma, so getting an accurate diagnosis will be helpful.

Fatigue is one of my major issues. I have some very good days, and some very bad days. As a golfer, I go out once a week but know that the next day I will be spent. (BTW, I just watched the video posted on this forum regarding fatigue. Make sure to see it!)

The other major issue I have is with my digestion. The muscles in my intestines no longer work, so I am dependent on daily doses of Milk of Magnesia to prevent constipation. If your wife experiences any digestive problems, make sure her physician is informed.

I have been getting travel insurance for the past few years because I am getting older. (I'm in my late 50s)  Prior to turning 50, I was not as concerned about travel insurance because it was unlikely I would have a medical emergency due to scleroderma.



#13 Joelf

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Posted 06 September 2014 - 04:35 AM

Hi Scareysarah,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering with Scleroderma for the last 20 years; I'm a comparative newcomer, having only been diagnosed for the last five years.

 

Thankfully, I do not appear to have the gut involvement which plagues you and so many of our members and I'm hoping that dubious pleasure will be postponed indefinitely! ;)

 

Now you've joined our community, please do browse our medical pages and keep posting!

 

Kind regards,


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#14 Amanda Thorpe

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Posted 08 September 2014 - 10:34 AM

Hello ScarySarah

Glad you liked the fatigue video, my favourite part is "say no!". We have to give ourselves permission to do what we need to do in order to live successfully with scleroderma.

Take care and keep posting.
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#15 CrankyGoat

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Posted 23 September 2014 - 05:28 AM

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


CrankyGoat - aka Steve

Vancouver Island, BC, Canada


#16 judyt

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Posted 23 September 2014 - 01:24 PM

Hi Steve,

 

I have been reading your posts all along but have not yet had the energy to reply and offer a welcome to you.   You seem to be learning fast and having the same reactions other husband/caregivers report having.   It is a big thing to have to change one's life so drastically and sometimes suddenly so good on you for taking it all in your stride.

 

What has particularly moved me today is your decision to move from your beloved island to the mainland.   My husband and I were lucky enough (in a previous life) to have the opportunity to visit your part of the world and reading your posts brings back instant memories of the ferry rides from Vancouver amongst the islands and the views of the houses and trees on them.

 

We too had to move from a much loved home right on the beachfront in a popular touristy area where there is always something interesting to do or see.   I could no longer manage the stairs and the steepish terrain so was actually thankful we found a lovely one level home also right by the sea but in a quieter area.   I know what you will miss and hope that you can come to terms with it quite quickly.   We also have a small apartment in the city for days when I need to be at the hospital and that is a real boon.  

 

Good luck to you both on your journey to a new life.

Best wishes

Judyt



#17 CrankyGoat

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Posted 25 September 2014 - 03:03 PM

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.


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Vancouver Island, BC, Canada


#18 Amanda Thorpe

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Posted 28 September 2014 - 12:25 AM

Hello Steve

It seems that you and your wife have a good attitude towards scleroderma and everything it brings with it. It's absolutely vital, that and that you're putting up a united front.

I have to say that my husband makes this whole experience bearable, even enjoyable.

Take care.
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#19 CrankyGoat

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Posted 02 October 2014 - 06:59 PM

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...


CrankyGoat - aka Steve

Vancouver Island, BC, Canada


#20 Joelf

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Posted 03 October 2014 - 09:16 AM

Hi Steve,

 

I understand Jennifer's keenness to continue exercising and keeping herself fit; one of the questions I didn't ask my medical team was "Can I go to the Gym?" because I didn't want them to say I couldn't!! ;) I've found the main thing with exercise is not to overdo it; I found I could no longer run as well, because of the pounding to my aching joints and obviously, it's not a good idea to over strain your lungs and heart, but I carried on going to the gym, riding, walking dogs etc. One of our members does a lot of bicycling and has a lot of pleasure from it, so I think that Jennifer could do this if she felt able (but I would certainly confirm any exercise she is planning with her medical team, as I have no medical training and can only advise you from my own experience.)

 

As regards the blogging, I'll be emailing you privately with the details needed.

 

Kind regards,


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