CrankyGoat

Travelling with Scleroderma?

21 posts in this topic

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

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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.


CrankyGoat - aka Steve

Vancouver Island, BC, Canada

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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.


Amanda Thorpe

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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

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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,


Jo Frowde

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Well, I may need to rethink this travel insurance thing and see if I have enough. The place in Mexico we visit was hit with a Category 3 hurricane and the airport was destroyed. Total devastation, no water, power, phones for weeks. The military airlifted tourists out but it took days. I'm not sure if no matter what policy you took out would help in a crisis like this...

 

We are scheduled to go in a few months, still waiting to hear if where we are staying will be ready. After going through Superstorm Sandy here two years ago I know that it takes a long time. Usually the tourist areas get up and running fast though. The airport just reopened on a limited basis. We are not going for several months so will have to wait and see.

 

miocean


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