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I feel so betrayed by this disease.


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#1 LMS

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Posted 06 June 2008 - 12:04 PM

I feel so betrayed by this disease. Before I got sick I was in the best shape of my life. I worked out for 45 min. 5X a week and biked 6 miles a week. I ate all the right foods. I fell into the trap of thinking my only concern (excluding a traffic accident) was heart disease.

No one warned me about scleroderma! No one ever told me that all the excersing in the world will not protect you from scleroderma. My lung capacity is decreased to the point where if I try to walk up and down the stairs in my home I end up huffing and puffing. It would take me 30 minutes to do the 6 minute walk test. Needless to say I put on some weight. Sometimes I think I tell myself if I get fat maybe the scleroderma will go away. I figure if my disease keeps progressing the way it is the gi sysmptoms should start soon and I could potentially lose 40 lbs in 2 months.


Thank you for letting me vent.

LMS

#2 Shelley Ensz

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Posted 06 June 2008 - 01:13 PM

Hi LMS,

I'm sorry you are feeling so upset. Scleroderma is not fair for anyone. We are really over-sold in our society about how a good diet and exercise and a positive attitude with prevent or cure anything.

But that doesn't mean good health habits are no longer necessary, in fact, they are needed more so than ever -- within the limits of what our doctors recommend and within reason, of course. Gaining weight won't help and it is not preventive for the development of G.I. problems; which, by the way, are not inevitable for everyone with scleroderma.

A general rule is that when we hit any emotional bump in the road with scleroderma, we should give ourselves about two weeks (or less) to get over it. If we haven't developed some new coping skills by then or seen an improvement in our attitude, then we need to talk to our doctor(s) about being evaluated for depression, anxiety, etc. since those things are extremely common in scleroderma patients.

Maybe you'll feel better just by having gotten this off your chest! Now that it's out in the open, try not to stew about it. Perhaps you can even use some of the previously dampened energies to see what lifestyle changes you can make now to help you live more comfortably with scleroderma. You know, like the old line, I may have scleroderma but it doesn't have me!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 truman

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Posted 06 June 2008 - 01:40 PM

LMS:

This thought has crossed many, many minds of those of us who have this disease. I kept telling my son, if cancer, I'd have a chance to fight. He couldn't understand my logic. I hid this disease for so long from friends and family more in embarrassment than anything else. I ran, hid, went into denial. I finally realized that no matter how much I tried to pretend it didn't exist, it didn't take it away.....it was still there. I came to a point of realizing no matter how much denial I put into it, it is what it is....it's here.

Yeah, why me? But then again, why anyone else? It's here, it's mine and it's not going away. I've learned to take each day as it comes and if a period during that day makes me feel free of this disease, I'll grab that moment. If not, I'll deal with it, there is no other choice.

It does make me treasure all the past years of good health and vitality. It pains me to anticipate the future. Again, it is what it is and I will make sure I treasure every free moment. I'm a big believer in things happening for a reason. This disease has shown me what wonderful friends I have, it's shown me to look for the minute details in others lives for the hints of their disappointments and perils; to be able to react and act.

I interact with dear friends on this forum who share this disease; some more debilitated than others. I see their determination in fighting; I share their happiness in births of grandchildren, special events, overcoming obstacles.

I too. understand the need to vent, because sometimes it's just too much to handle. When all is said and done, it's mine and that's not going to change. I need to change to be able to handle my disability and whether thats mentally or physically and usually both, I will do that. I've been catered a very large plate of obstacles all my life, and I've learned that through little bites and a longer dining period, I usually manage to clean my plate.

We're here for you, we share your illness, your anger, your frustration. We also share your happiness, input, ideas and just you :) .

We can't change the hand of the cards, but we certainly can support and share in going through life.

In the whole scheme of things, I really don't know of one situation of all my friends and acquaintances where life is perfect and where they are any happier in mind and spirit than I am. We all have are crosses to bear, it's just what the title of the scene is called.

Your mind set will become accustomed, later down the road; this is all too new at this point. We care, we understand and we are always here for you.
Tru

It is what it is...........

#4 georgette

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Posted 06 June 2008 - 01:41 PM

Your so right scleroderma is a very 'unfair syndrome ' to be afflicted with , it appears to be merciless and tends to have a mind all of its own , for me , when first diagnosed I realised that I had to go thru a :mourning period' I mourned for the life that I knew ,and had been so shockingly taken from me without my consent !!! once I got thru that mourning period , I then just had to reconcile myself to the facts ,and the facts are that ya just have to keep adapting your new life around the symptoms as they arise , which on most occassions I do but here are still times where this incidious monster gets the better of me , but most of the time I am in charge of my life because I work around the symptoms ... its all a part of our journey ,and when ya get pressed into a corner there are only 2 ways out sink or swim , I tried the 'sinking bit for awhile but eventually found the strength to start swimming , my light bulb moment came when I realised that life was not over it was just changed , and I can't control this syndrome BUT I can control how I react to its symptoms .....hense peace in my new sclero life .......good luck with this psychological challange that is before ya hugs georgette

#5 Snowbird

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Posted 06 June 2008 - 03:49 PM

Hi LMS

Sadly, nothing is fair about this disease or any of the other nasty diseases out there....but this is a good place to vent about it because I'm sure we all understand where you're coming from. I really think it's that fear of the unknown that lurks in our shadows and makes coping more difficult for us some days.

I also think Shelley is right, it's important to try to take it one day at a time, one thing at a time and for us to try not to look too far ahead into what the future might hold. You know, that other old saying, worry about today and not tomorrow and with any luck, we'll wake up to a much brighter day! Try not to be too hard on yourself and take care! :)
Sending good wishes your way!

#6 Shelley Ensz

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Posted 06 June 2008 - 03:50 PM

Georgette, that was very insightful!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 barefut

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Posted 06 June 2008 - 04:14 PM

LMS~

Vent away! Vent often! Vent for health! If we didn't vent we'd explode.

I think we have all been through what you are feeling at one point or another and I know I, myself have visited that place more than once.

Early on in my blogging career I wrote about the stages I went through in the first year of dealing with my diagnosis. Grieving is one that tends to come and go for me.

I grieve for the way my life could have been - the plan I had in my head of how I'd live the rest of my life - the things I always wanted to do before I die that I will not actually get to do.

And now it's all about one day at a time and making adjustments along the way. Sometimes I get resentful of having to make adjustments and having to make the best of things as they are now and I have to remind myself that it is okay to feel that way sometimes and it is okay to scream into my pillow how it is not fair -for any of us or anyone with any chronic illness to have to suffer.

When I am all done, I have to remember all the blessings in my life and all the good things that this disease has taught me. It took awhile but I have actually been able to find blessings in having been diagnosed with scleroderma. Top of the list are all of my friends here.

Hang in there. Here's to a better day for you!

#8 Donna V

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Posted 07 June 2008 - 06:12 AM

I hear what you're saying and you're not alone! I had what sounds like the kind of life you once had. I listened to my body and knew what was good for it and what wasn't almost intuitively. People couldn't believe me when they learned my age. And then, well, then my body started telling me things I didn't understand. I still don't. I want to believe I can control this, that too much stress in my life is what triggered it and that I can stop the progression of disease because I could control my physical health and well-being so well before.

I think we all share reactions, the denial, anger, depression and grief, but people are a such a complicated mix of nature and nurture, beliefs and circumstances. For example, I've been so submersed in denial that I've avoided this site for months (cleverly "misplacing" my login name/PW) so I could concentrate on the other things in my life and forget what doesn't want to be forgotten.

I'm hoping you'll feel free to vent, to listen to what others have to say, and to offer your own feedback if and when and for as long as you need to; I think ultimately that the sharing and helping one another is what really matters.

Donna

#9 debonair susie

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Posted 07 June 2008 - 06:20 AM

LMS,

I echo the sentiments of everyone who has posted here, "it" being very unfair.

Like you, I was very active, stayed in shape via various sports I participated in:
Field events in high school and as an adult: putting shot, discus and javelin, softball,
co-ed power volleyball and biking.
Fair to say I took part in these things because I loved each, not because I felt driven
to stay fit...
I've always loved the outdoors.... walking is something I enjoyed, not only for exercise
but because it gave me a feeling of freedom.

Since illness set in.. in the early '90s, I've had to reserve my "spoons" for those things I
must do... to function in daily life.

Sure, I was very resentful... as a matter of fact, I had more low than high days. Some
days I say to myself, "I wish I could" or "what if I hadn't"...
The reality for me is, if I HADN'T kept as active as I was, I may not be able to do what I still
CAN do!
Sure, I play out much faster, but I also know that I'm so fortunate for each day.
I TRY to keep the best attitude I can, which I feel, helps me mentally, physically and emotionally.

However, I've come here several times to sound off about different things and my cyber friends
have been right here for me. It's a great feeling to have a place to come and just talk, support and
care about others who know so much about what I/you and they are going through.

As Shelley mentioned, Georgette spoke so eloquently about her feelings... How insightful you are, Georgette!
Thank you for sharing your thoughts/feelings withus... it really helps keep us grounded!

Hugs to you, LMS and All :rolleyes:

Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#10 Guest_Sadie_*

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Posted 07 June 2008 - 07:37 AM

LMS, I really can't think of anything to add. Everyone has said good things to you!
We all know how you feel. What is wonderful about this board is you can vent and everyone gets it! I find that
when I share things, it helps me alot!

As nasty as this illness is, we got to keep up a good fight! As you probably know by now,
my doctors. have told us that I'm in my final stages of the illness. I know that things aren't real good but I know I got to keep my chin up and keep fighting this battle! Its a tough battle at times. I knew 18 years ago when I got diagnosed that it was going to be rough at times. Like Tru said, the times I feel good, I savor every minute of them. Anytime you need to talk, we are all here for you! We are family here!!

Sadie

#11 LMS

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Posted 07 June 2008 - 02:26 PM

Thank you everyone for the support!

I am feeling much better. The take home message for me is to slow it down. A natural control freak I tend to want to get to far ahead. I was able to make it through today (Saturday) because I focused on what I needed to get through today. I will worry about what I need to make it through tomorrow when tomorrow comes.

LMS

#12 smac0719

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Posted 07 June 2008 - 04:29 PM

LMS,

That's a good attitude to take. I never thought I'd actually live "day to day" until the scleroderma. It's not such a bad thing. I don't apologize for my not so happy days either. I have my "pity parties" where I fell overwhlemed, but they don't last for long. Through each day that I live, I try to accept and embrace that I have been given another day to make a difference in my own and hopefully someone elses life that I may come in contact with or that I know. I hope that when my journey is over that my living was not in vain.
I may have Scleroderma, but Scleroderma doesn't have me!

#13 YFChoice

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Posted 07 June 2008 - 05:03 PM

Here's my dime's worth (2cents + inflation).

I'm glad I have SD because:

As a cyclist, I don't have to ride my bike 100 miles anymore.........10-20 is the most I can do.........I hike and snowshoe a little more.

I was able to retire from the post office and become a massage therapist instead........now I don't get blamed for the stamps increase anymore. Plus I like my boss more (cause now it's ME!!)

I don't have to change the oil in my truck or in my wife's car or do any other mechanical things that I always hated........yay for bad hands plus I have to keep them protected for massage.

After having a heart attack and 3 separate rounds of chemo plus the ER visits plus PFT tests plus screaming joint pain days..........I'm not scared of much anymore.

After having a heart attack and 3 (well, see above) I found out how extraordinarily strong I am.

Because of stomach problems, I don't have to eat something if I don't like it or if a daughter-in-law is a bad cook...........and I can blame it on SD.

Now I take the time to smell the flowers.......and to plant them........plus tomatoes and peppers and squash and cukes and broccoli and cauliflower and carrots and potatoes and okra and you get the picture.

After having SD for 26 years (after given less than 1 year to live), I've outlived one of those wonderfully negative doctors...........there is justice in this world.

But the most important reason of all on why I'm glad to have SD.......I met my wife at a SD convention (she's had it approx 15 years) and we will celebrate 10 years this summer.......we blended a wonderful family of 5 boys...ages 17-26.

LMS, here's my point. I don't care why I wish I didn't have SD (or lupus, which I also have) cause it doesn't matter. I don't care what about SD I hate. I've always had a positive spirit and I think it makes a huge difference. Yes, it's a tough disease. But if SD is waiting for me to cave in, it's got a long wait. You DO have to take each day as it comes.......hope for the best.........prepare for the worst. And remember to make minor adjustments along the way.

My 18 month old grandson just left. We babysat for a coupla hours. He's so SO cute. That's what life is all about.
~ You have to think anyway.....you might as well think big

#14 LMS

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Posted 08 June 2008 - 02:01 AM

YFChoice,
Thank you sooo much for your 2cents + inflation. It was truely inspiring.

LMS

#15 Clementine

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Posted 08 June 2008 - 02:20 AM

LMS,

I am sorry you are having a hard time with all of this. I think most of us do at some point, even after we've decided to accept the disease. It's OK to get mad, but it's MUCH more fun to be happy and laugh.

I think we should start a new thread on how scleroderma has made a positive impact on our lives. I cannot say I am GLAD I have sclero, but the direction my life headed after the fact has been wonderful.

Maybe one day you can get back into a fitness routine that you like even better than the previous one and keep adding different activities to make it even more colorful. I can relate to this one in particular because I used to be an avid hiker and now I just walk, but the beauty of that is I now have 2 dog kids that get to go with me!! It makes it much more fun to focus on them, and not how far I can hike.

Anytime you start going to that dark place, start posting!! That's what we are here for.

Love,
Tangelo

#16 Lucy

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Posted 08 June 2008 - 03:11 PM

LMS
For me I have spent the last two years thinking I must have been such a bad person to have gotten such a rotten disease. I have spent the last two years mourning all that was taken away from me that I had built. I spent the last two years beating myself up about being lazy because I did not have the energy to get off the couch and do chores. I spent that last two years embarrsed that I have SD and trying to hid it from everyone at the expense of doing nothing (my SD is very rapid progression and has really physically limited me).
I have totally waisted the last two years.
Approx a month ago I went into the hospital with a sever drug reaction, I was not really sure if I was going to get through it or not, but as I lyed there I promised myself if I got out of the hospital I would start to live my life again. And I have. I now have a new life, it is not the one I would have chosen, but there is life with SD if you get the mindset of what you can do not what you cannot do. Today I went to the show with my husband and step son and for the 70 minutes I sat there still and enjoyed the move and listening to my step son laugh my SD was the last thing that was apart of my life.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#17 Hapi

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Posted 08 June 2008 - 10:20 PM

It has been so heartening to read that everyone has been through the same thing when first diagnosed.

I tried to carry on with my life the way it had been, and, quite literally, fell flat on my face! I just lay there crying feeling very sorry for myself.

Then I just started making adjustments. Instead of feeling a failure when I couldn't do the housework in one go, I now vacuum one room then have a rest - and a cup of tea! - then do a bit more and so on. I don't beat myself up because I get tired and can't do what other people do. In many ways it has been rather liberating. I do what I want to do, and not what other people want me to do!

While there's life there's hope, and any time there may be a wonder drug to make us all well again!

Take care,
Hapi