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Is anyone's body like mine?


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#1 Honey

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Posted 27 June 2010 - 01:19 PM

Hello to all.

I have systemic sclerosis and grave's disease. I am 58 and have been a professional exercise instructor and personal trainer since 1982. After the diagnosis in January, 09, I had to give up my clients and exercise classes. I continue to teach Gentle Yoga classes (therapy for me and my students), but no cardio and strength classes. I have qualified for disability, and I am so grateful for that.

I would like to know if anyone has had the experience that I have had with their bodies. I used to weigh 120 pounds (very fit), and immediately prior to and after the diagnosis I started losing weight (muscle and tissue) very quickly. I now weigh 100 pounds and look anorexic. My arms and legs have lost so much tissue that all of the veins are showing like I am 90 years old. I am literally skin and bones. All of my joints protrude (shoulders, elbows, spine, hips, knees, toes and fingers). I wear long sleeves and pants even when teaching due to the appearance of my body.

My torso and face seem to be normal, but the rest of me is shocking. I am not vain, but it does bother me. I am high in spirts and have wonderful support with friends and family, but I am curious about my appearance and if anyone else has experienced anything similar.

Kindest regards,
HONEY

#2 Amanda Thorpe

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Posted 28 June 2010 - 03:25 AM

Hello Honey

At diagnosis in 2007 I was a UK size 14 and in under a year went down to a size 8. Now in 2010 I am well pleased to be a 12/14. I had major skin involvement and now some of the skin has softened, unevenly making for a lumpy appearance. Where the tight skin started and still is, the lost tissue has not returned.

My calves are like twigs and so are my forearms, I have sclerodactyly hands and have patches of skin up to a centemetre thick on my feet with the lumpy look on the upper arms and thighs, think monster cellulite. However, I wear sleeveless, maxi dresses that put on display my hands and arms but weirdly I am conscious about my legs and feet.

When I first realised that I had a disfiguring disease I lived in dread about what would happen but now I don't and how bizarre is this, I am more comfortable with my appearance now than I have ever been. :emoticons-yes:

Take care.
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#3 miocean

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Posted 28 June 2010 - 06:43 AM

Honey,
I have never had the good fortune of being happy with my body. I was a fat teenager, thinned down a little in my early twenties due to walking the beach a lot and having to cook for myself, went up to 200 lbs. in my 30's, dropped to 140 by working out and running, gained 30 lbs, lost it when diagnosed with scleroderma, gained it again on dialysis for 5 years, lost it over the past six months through illness and a kidney transplant. I am now very happy where my weight is and am determined not to gain again. I weigh myself every day and keep an eye on it because it seems the only way I can lose weight is to get sick and I don't want to do that. However, from all the changes, at 57 I have the saggy skin of a much older woman. My inner arms are wrinkly, my thighs saggy, my stomach wrinkled. I still wear sleeveless tops and shorts and a bathing suit and try not to care about it. I figure I have been through a war and so far have come out winning. I have scleroderma mouth with many vertical lines yet recently people have been commenting about how much younger I look. Count your blessings. I think it is much harder if you had a great body to deal with one that isn't. Accept what is.

If you want to put on weight, try milkshakes, cookies, candy and ice cream. It worked for me!

Good luck,

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#4 Jeannie McClelland

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Posted 28 June 2010 - 09:13 AM

Honey,

One of the things on the list of symptoms for systemic sclerosis was weight loss. I figure it is probably the only one I've never had. :temper-tantrum:

I have gained about 36 lbs./14 kg. over the 16 years since we moved from the UK to the USA. I've been diagnosed 4 years this autumn. I guess I can probably blame about half the weight on the disease and various medications. Despite the weight gain, my skin and muscle tone is poor and the dry skin is really bad. The scleroderma mouth and disappearing lips are pretty annoying, not to mention the discolored eyelids, red blotches, and bags under the eyes. But hey, I'm getting up there in years too and if I don't find aging upsetting, I need to get really cross with myself if I allow the visible signs of the disease to bother me! :D

Live with (and love) what you've got! Every last one of us is beautiful. :emoticons-yes:
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#5 Honey

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Posted 28 June 2010 - 01:44 PM

Thanks to all of you who have expressed your feelings and shared you experience. I give thanks everyday for the love given to me and the kindness shared with me.I am learning to accept that I can live daily with whatever circumstances come my way. I will have peace on the mountaintop as well as in the valley.

I make my quarterly visit to my rheumatologist in 3 days. I am hoping for a good report.

Kindest regards,
HONEY

#6 Sandy B

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Posted 28 June 2010 - 08:48 PM

Hi Honey,

Yes like you I have dropped to a low of 7 stone 7, now hovering around 8 stone, so for my height 5`8" should be a lot heavier. Not keen on the anorexic look myself, but since I have gained a little, I feel happier, would love to put on at least another half stone, but seems impossible. Doctor recommended plenty of full fat milk, cheese, chocolate and yoghurt, but too much disagrees with me, currently have resource drinks every day to supplement diet as I have a lot of gastro problems.

I don't like the way my body looks undressed, but I dress to disguise/enhance it and wear what makes me look the curviest, which isn't out sized baggy clothes, these only make you look thinner, I find fitted clothes do look better.

Hope you learn to accept your body image and find serenity within yourself, life is too short to focus on the negatives.

Best wishes to you and take care.

Sandy B

#7 Joelf

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Posted 29 June 2010 - 01:05 AM

Hi Honey

Like Jeannie, I'm still waiting for the weight loss to kick in....... I should be so lucky!!! ;) :o

Because I spend all most of my life at the gym, thankfully I still have reasonable muscle tone on my arms and legs. :D However since I've been on steroids (for the past year) I have noticed a change in my body shape. My stomach is definately larger and my face has filled out (although the good news is that it's made my wrinkles less noticeable; there's always a bright side!! ;) ) They do help with the joint pain I have, though, so I feel that it's worth it.

When I was first diagnosed and told what strong medication I would be taking, I was most worried about my hair falling out (I have long, naturally curly hair and I don't do hair loss!!! ;) ) However my hair hasn't fallen out and my lungs are so much improved on the treatment I really feel I shouldn't be griping about a few cosmetic changes in my body......I'm alive and able to have an extremely good quality of life.:VeryHappy: :VeryHappy:

Good luck with your rheumatologist visit; I do hope everything goes well. :)

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#8 Sharon T

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Posted 03 July 2010 - 09:26 AM

Hi, all of you -

I was really glad to see this thread. I never thought I was vain but I've been having real difficulty coming to grips with my current appearance. Age is bad enough (I'm 66 this year), but with the steroids and other meds, I've gained 30 pounds that I definitely didn't need. So now I kind of resemble a soccer ball (I'm not quite 5 ft. tall, and I weight 145 lbs. now). I've also got the sclero lips. I managed to stop the hair loss (which was really breaking my heart, since I always had "good" hair), by using a shampoo and scalp treatment; the hair actually re-grew after I'd been using it for a few months. Muscle tone and skin tone are both definitely aging faster than they should. I guess I'm using this thread as a way of complaining about my appearance without having to worry that the hearers will call me a "whiner" or something. I know how much worse it could be, and at least the nastier aspects of sclero that have developed are under control for the time being, thanks to the meds. But it is so frustrating not to be able to control weight, strength, stamina, etc. by dieting and exercise the way we're told will work. It used to work, but it sure doesn't anymore! :emoticon-bang-head:
Sharon T.

#9 Amanda Thorpe

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Posted 05 July 2010 - 09:19 AM

I spoke to a lady today, newly diagnosed with sclero, and one of her main concerns was whether her medications were causing her hair to fall out. I explained that at my first appointment with Prof Denton one of my first questions was whether sclero would effect my face. I don't think we should underestimate the impact of the physical changes sclero can cause, afterall we see them everyday.
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#10 Shelley Ensz

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Posted 03 August 2010 - 05:37 AM

Honey, maybe I missed something (I probably did!) but how did your rheumatologist appointment go? Are you holding your own with scleroderma right now, or do you have any changes?

Thanks for raising such a good topic, on how we adjust to the changes in appearance. We can all use good role models in how to positively cope with appearance changes, and even when we cope extremely well, it doesn't necessarily mean its not a bother to us at all, either.

Here are some warm hugs, just for you. :emoticon-hug:
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#11 Kathy D

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Posted 03 August 2010 - 08:18 AM

Oh Dear, I have changed too.

My most noticeable is my face, always blue/purple bags under my eyes no matter how much I sleep, its so hard having people tell me "you look tired", and my eyes dry easily and turn red, so then they think I am upset and ask if I'm okay.

The others are around my nostrils and my upper lip. My nose looks pinched around my outer nostrils, and my upper lip looks like a much older woman that partied very VERY hard all her life. Very difficult to cover with makeup.

Tough at 39 years old, took a look at my drivers license picture from 29 years old, ack~!!
Diffuse Scleroderma Diagnosed March 2009

#12 sherrytrifle

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Posted 04 August 2010 - 09:26 PM

Hi All,

I was a stable 10 stone 6 before I was diagnosed five years ago. I was 8 stone but recently I've lost an incredible amount of weight and am now 7 stone 5. I've been prescribed special drinks. Like everyone else bones protrude which makes sitting in hard backed chairs very uncomfortable.

#13 Shelley Ensz

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Posted 10 August 2010 - 02:04 AM

Sherry, I'm sorry you've had so much weight loss. Can you only use prescription meal drinks, or can you also make your own liquid meals, things like chicken dinner in a blender?
Warm Hugs,

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