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What ability would you most want to keep?


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#1 Jeannie McClelland

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Posted 01 April 2009 - 09:34 AM

OK, here's another one of my out-there questions. I'm not really sure how to even word it. What ability, given the complications we know so well, would you most want to keep. Hand mobility, sensitive finger tips, stamina, physical strength, ability to eat what you want (when you want it!), ability to tolerate temperature changes or anything else that really matters to you. You don't have to limit yourself to one thing, but I don't think anyone is doing research on a total body transplant. :lol:

I got to thinking about this after reading jillatk's postings about how Raynaud's has impacted her love for rock climbing. Someone else had posted that she used to do a lot of crocheting and couldn't any more.

I used to tell my husband that certain things wouldn't matter as long as I retained such and such. I found that list changing as time has gone by, much to my surprise. I think right now, physical strength is the one I want to keep. I'm thinking about what I need to do to keep that - better nutrition, more targeted exercise, paying attention to my O2 levels, etc.

So how about you? I'm really curious.

Warm (strong!) hugs,
Jeannie McClelland
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#2 Margaret

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Posted 01 April 2009 - 09:48 AM

Hi Jeannie ,

From a Mom's point of view, I found the hardest thing to *watch* was Gareth suffering from the major fatigue for those first 9 months. His life basically stopped.

Take care, Everyone.
Margaret

#3 Shelley Ensz

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Posted 01 April 2009 - 10:00 AM

Hi Jeannie,

That's a great question and one I've actually spent some time thinking about over the years.

I would most want to keep my eyesight, even if everything else went kaput. So as my various abilities or disabilities come or go, I'm generally fairly accepting of it. But I had a great uncle who went blind quite young, and although he was very well acclimated to it, and ran our family farm despite it all, I always felt angst over what he was missing out on, even the simple sight of the cows coming in over the hill for their afternoon milking.

However, he had very strong hands and was probably the best milker in ten counties. I'm sure he probably enjoyed the smell of hay more than I did. But still, its astounding what we can live without, if we have to, and still remain determined to enjoy life and be happy. Not that we don't all experience a good share of angst when we discover it is necessary to adjust to yet another ailment or treatment or surgery or reduced capacity.

I'm sure that, just like everyone else here, I would somehow adjust to a new sort of happiness even if I was blind, and find new things to appreciate (Smells R Us, bring it on!). But, if I was given a choice (which none of us are, we have to accept what comes our way and make the best of it), I would choose to keep my eyesight, above all else.
Warm Hugs,

Shelley Ensz
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#4 Penny

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Posted 01 April 2009 - 10:22 AM

Jeannie,

What a thought provoking question!

I have already lost much of the things I loved doing, and always thought that each loss would be a life ending event.

Okay, I can no longer ride horses, but as long as I can still go for long walks became, okay I can no longer walk, but as long as I can paint... each "as long as I can" became the thing I would lose.

It has come to me, looking at all my 'losses' that I survived them all and I have discoverd that the one thing I would hate to lose is the laughter that sneaks up on you when you think there is nothing left to enjoy in life.

So, I have my "as long as"... as long as I have good friends and laughter in my life I can deal with whatever is thrown at me.

Warm hugs,
Penny

#5 Amanda Thorpe

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Posted 01 April 2009 - 10:30 AM

Hello Jeannie

This post reminds me of that weird question game kids play, would you rather be blind or deaf, loose a foot or a hand? Oh if I'd only known then what I know now! :lol:

It's true the goalposts move and because my disease was initially so progressive they moved fast! When first diagnosed my biggest fear was what would happen to my face and hands and that I'd be riddled with ulcers, now it's how much of a mouth will I be left with and will all my fingers curl up completely?!

The reason I was concerned about my face and hands is because 2 weeks before diagnosis, I saw a film about sclero and in it the woman's face ended up looking like Jack Nicholson's Joker from the original Batman film and her hands were pretty much wasted as well!

So I started out telling myself I'd be okay as long as nothing happened to my face and my hands. I am known for my cooking, my smile, laugh and red lipstick and couldn't bear the thought of loosing things that were me. If I couldn't cook we couldn't entertain friends, if I couldn't smile how could I express joy?

Well now it's more the fatigue and pain that are issues with any degree of cooking, I have adapted to having disabled hands as well as asking for help lifting/opening/peeling things when I do cook. As for my face, it's a good thing I am adept at using lip liner and a lip brush so I still have a smile if somewhat smaller than before. :D

I don't really think I dread anything sclero might bring because I know I can adapt and if all else fails there's always plastic surgery! :lol: I would like to keep my mouth (yeah, yeah I know what you're thinking) and my hands though.

Excellent thread, looking forward to reading other replies that will no doubt be less vain than mine! :)

Take care

Amanda
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#6 YFChoice

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Posted 01 April 2009 - 12:04 PM

This is one of those questions that I don't like to entertain. It is a very thought provoking one and sure makes you think. But in my 27 years with this illness (and lupus) I have never done the "what if" game. SD is such an unpredictable disease and there is no set pattern as to the way it progresses, or not. It has worked, for me, to have the attitude that I will be able to handle EVERYTHING scleroderma throws at me. It has worked. Of course I have done plenty to prepare myself for whatever happens -- eat right, take my meds, workout (body, mind and soul), laugh, enjoy life. And I know, no matter what hurdles I face, I will enjoy life to the fullest, as it presents itself that day. Not every day is the way I want, but I can deal with it.

Short answer -- I'm with Penny on this one.
~ You have to think anyway.....you might as well think big

#7 JANQ

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Posted 01 April 2009 - 12:04 PM

Hi Jeannie:

Very good question.

I would have to agree with Margaret, because the lack of stamina and the debilitating fatigue affects all else in my life. It robs me of my quality time with my daughter, the ability to go anywhere, the ability to do anything outside of the home, the ability to take care of my home properly, the ability to take care of my gardens, the ability to cook decent meals, the ability to enjoy life, really.

If I could just do all of these things again... (deep sigh).

Many, many hugs to all.

Janet

#8 Seton

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Posted 01 April 2009 - 12:21 PM

Hi Jeanie,

I am new to the site and new to the diagnosis of Limited Sclero. I was diagnosed with APS six months prior as well. For someone who has not has much time to digest all this information, at first your post was a little unsettling. After reading all the other post on this topic, I am thankful to know I am not alone. It sounds like a positive attitude and a great sense of humor is what it is going to take to see me through.

To answer your original question, I have six kids ranging from 22 to 7, my biggest fear is that I won't be able to take care of the seven and ten year old like I did the other kids. I have NO energy, I feel guilty that I just can't keep up the pace.

Thanks for your post it gave me much encouragement.

Take Care,

Seton

#9 ozzy69

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Posted 01 April 2009 - 01:37 PM

Great question! I would like to not have raynauds and then extreme heat. I would also like to wake up feeling good and not be in so much pain, and exhausted by the end of the day.

Nina Lynn

#10 gigi08

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Posted 01 April 2009 - 03:50 PM

I really liked your question and reading some of the answers.

I remember just telling myself several months ago when I found out I was losing my hair again, "I'd rather lose my hair than to lose the use of my hands". Not that I want to lose my hair, but it is happening, so if I had a choice then I'd choose to lose my hair. It's amazing what goes through our minds, wondering what will it be next?
Gigi08

#11 ladyhawke

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Posted 01 April 2009 - 04:25 PM

Good question. But first a comment to gigi08. I lost most of my hair because of the drugs so I bought a wig. It was the best thing I did. Got one close to what my own hair "used to be". It had coppertone highlights in it and I liked it so much that when my hair did grow back again, I styled it and highlighted it just like the wig. Few people even noticed.

As to what I most want to keep, that would be strength and stamina. I'm not as bad as most people here and this is "livable". But my body strength, especially arms and hands are weak, and I tire out and can't keep going like I used to. I don't feel good ever. I'd like to wake up and for the whole day actually "feel good". It's going on 3 years now, and I can't remember what that was like. But again, for me, this is livable. I could be so much worse off.

Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#12 GocartMoz

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Posted 01 April 2009 - 04:25 PM

The ability to EAT! I have never eaten so healthy in my life because of this dreaded disease. I want a pizza, some fettucine alfredo, a big piece of chocolate cake and a vanilla shake to wash it all down. And that is just for breakfast. Of course, I am joking to some extent. However, the inability to eat a lot of the foods I have always loved has been very difficult. Diet restrictions often make me miserable. Ask those around me.

That being said, I agree with Shelley. I can't imagine losing my sight.

#13 Shelley Ensz

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Posted 01 April 2009 - 04:32 PM

Seton, welcome to Sclero Forums and thanks for letting us know what you'd most like to not live without. Energy is always a big issue for me. Well, not big, actually, downright huge.

I don't know how you'd make the best of it, except to consider that you have six children so you have twelve extra arms and twelve extra legs and twelve extra set of eyes to help you get along, despite anything scleroderma throws your way.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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#14 Jeannie McClelland

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Posted 01 April 2009 - 04:51 PM

Hi Seton,

Welcome to the Forum and thanks a lot for posting to this thread.

I'm really sorry you have both scleroderma and Antiphospholipid Syndrome to deal with. I can understand that you must be feeling a lot of information overload. :) It takes a lot of time to assimilate it and decide what's relevant to you and what isn't.

You've already figured out the two things that none of us can afford to lose and they are, as you said, a positive attitude and a sense of humor.

I have 2 sets of friends who each come from a family of 10 and the one thing I observed is that they all look out for each other (even in the midst of a squabble) and the things that need to get done always seem to happen. I'll bet you find every one pitches in and even the littlest ones will want to help out.

Best wishes and warm hugs,
Jeannie McClelland
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#15 barefut

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Posted 01 April 2009 - 05:04 PM

Wow~ Thought provoking question! Hmmmmm.......

I sure would love to be able to keep up with my boys in their sports, not to mention introduce them to new activities like I grew up on - skiing, river rafting, but well, those are out of the question for me with Raynaud's, muscle pain, stiffness and fatigue.

So, I guess I would most like to have been able to keep some pain free endurance and warmth!

#16 susie54

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Posted 01 April 2009 - 05:08 PM

Had to think about this one. Each time this disease throws something new at you and you grieve a certain issue with your body, you miss that particular issue and then move on and adapt. I used to love to bike, can't go very far at all anymore. I used to love my long walks, those don't happen anymore. I truly pouted over that one for a long time. But then I move on and realize how much I can still do. I fight back as much as I can but realize my limits. My limits of energy supply get very frustrating as it takes away my time from all the people I love and the outdoors. But compared to so many here, I am dealing with so little and I feel grateful for the good days and great moments with my grandaughter, family and friends. I love my gardening and water sports. I am so glad to live where it is warm and summer is coming. Looking forward to all of summer's pleasures. Susie54

#17 Sweet

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Posted 01 April 2009 - 06:13 PM

Not sure if this counts, but I would like to be pain free. Next would be energy.
Warm and gentle hugs,

Pamela
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#18 Judy Devlin

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Posted 01 April 2009 - 09:32 PM

Energy is no. 1 with me. If I had the energy I could still try to do things even if not done as well. Then positive thinking, sense of humor and no pain. Being alone and isolated is the hardest with chronic illness, whether by choice or happenstance. Keeping the fear factor of the unknown seems also to be a daily weight on most of our shoulders, so finding a spiritual anchor of some sort also helps.

And as Shelley said, keeping one's sight is at the top of the list for me also. I've already lost my hearing, taste, touching hurts, etc., so I'd like to keep my eyes and my wits about me.

But oddly for myself, I've never felt that connected to my body; I always felt it didn't or wouldn't keep up with me. I often resented having to interrupt an activity to eat, go to the bathroom, groom and maintain 'my carcass.' One of my mottoes is, "We are not our bodies." That gives me great hope for the future ;)
There are over 1,000 patient and caregiver stories on the main Sclero.org site.
Warm regards,

Judy Devlin
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#19 Amanda Thorpe

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Posted 01 April 2009 - 10:34 PM

Susie54 - You're absolutely right about grieving the loss. I don't think we always allow ourselves that moment whether from fear or it's too painful but however adaptable we have become loss is still loss.

Seton - Welcome to the forum and as you say humour is the best way! :lol: Really what else can you do with a disease as varied as sclero? I mean who ever heard of a disease that makes one part of the body bigger through swelling and another smaller?! I should say welcome to the weird 'n' wonderful word of sclero! Look forward to more posts from you.

I had forgotten about the stamina issue, mind you I've always been a sleepy person, my nephew says I should have been born with a bed on my back to save me the trouble of getting in it. Yes it would be great to live a 12 hour time period that was a sleepless zone -- I could do so much if I could stay awake long enough to do it. (Hey we should have a sleepy clickable smile -- mind you we'd wear it out in 5 seconds flat!)

Amanda
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#20 janey

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Posted 02 April 2009 - 03:47 AM

Definitely the eyesight and hearing. Because of my job and hobbies (writing, piano playing, cooking and quilting), I cherish the continued use of my hands. Almost lost that ability five years ago, but determination, exercise and a great doctor prevailed.

I've always been a walker and hiker/backpacker and lost that ability for four years. Now with a great cardiologist on board, I'm back to walking. I've replaced the hiking in the mountains with beaches and lazy fishing streams that the hubby can fish in and I can relax and read while listening to birds and not cars.

I've grown to accept no more wine, dairy, greens, and a limited amount of chocolate. I never knew there were so many good cookies out there! :)

We are all so very adaptable. Rather than cry over our loses, we can replace them with new things and learn to do it differently. That's what makes us all so unique. A lot of people can't adapt to change, but we can - so Kudos to us all!

Big Hugs,
Janey Willis
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