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Am I alone?


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#1 Patty Arche-Hueck

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Posted 23 November 2010 - 06:34 AM

Posted Image I am asking if is only me, who really feels scared when reading the forums?

Guys I got into another scleroderma group in looking for answers and it is really scaring and not comforting. I had my first real flare up in May, it lasted for 3 months, (well, I am not well yet but better thanks to the prednisone, ecotrim and mobic) so I am still new to scleroderma and yes I am looking for honest answer and also for a little hope. I am getting really scared of the future, I am not like this usually as I face and live life to the full even when things go wrong. My rheumatologist helps and this group also helps me but reading about scleroderma scares me out of my wits, am I alone? Should I ignore everything and wait for whatever scleroderma brings to me? I am so confused and frustrated, all I know is that there is not cure but what about quality of life? Or should I say quality of a short life....

#2 Amanda Thorpe

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Posted 23 November 2010 - 07:11 AM

Patty no one knows whether they're going to have a long life or a short one whether they have scleroderma or not. Some people with scleroderma live years and others don't just like some people get run over by buses and others don't! :lol: The important thing to remember is that here at ISN is the best place to source your scleroderma information from because it's accurate and not hysterical.

I might have only had scleroderma for 3 years but I intend to have it for many more (unless they find a cure that is) as many here do and there's no reason why you can't be one of us. :emoticons-yes:

When you have an illness described with words like incurable, rare and life threatening at some point you're bound to wonder if the end is nigh :crying:. Life expectancy was one of the first things I discussed at my initial meeting with a scleroderma expert but now it's not really something I think about, even with heart involvement. Why...because I am too busy living...my future's so bright I gotta wear shades! B)

Take care.
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#3 Joelf

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Posted 23 November 2010 - 07:21 AM

Hi Patty

It's quite natural to feel scared and worried when you're suddenly confronted with a serious illness such as Sclero and I certainly don't think that you're alone in feeling like that.

I think more often than not it is a fear of the unknown. In the beginning, before I was diagnosed, I very foolishly googled 'Pulmonary Fibrosis' and scared myself witless! :rolleyes: However, when I first spoke to the wonderful consultant at The Royal Brompton Hospital, he told me that he was almost certain (at that stage) what was causing the fibrosis on my lungs and furthermore would be able to give me something to make me feel a lot better. Thereafter I felt a bit happier and so relieved; mainly because 1) he was a top lung specialist and therefore knew what he was talking about and 2) he was able to instill confidence in me over the treatment I would receive.

Trust me, Patty, you will be able to enjoy a good quality of life after Sclero; it may be a bit different to what you had planned out for yourself but it will still be worthwhile. My life is still very fulfilling and enjoyable and I can do most of the things I enjoy doing (albeit at not such an intense level ;) ). One of the best things is that through having Sclero, I've met some really lovely people whom I wouldn't have got to know before.

I do hope that this post has gone a little way towards reassuring you; here's a :emoticon-hug: to give you a little comfort.

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#4 ladyhawke

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Posted 23 November 2010 - 07:33 AM

Hi Patty

Thinking about what "could" happen, is really scary for sure. I've been on the scleroderma boat now since 2006. Well, that was when I was diagnosed. Who knows how long, I've really had it? I know for sure that at least 3 years prior, I knew something wasn't "right". I've done the wheelchair/walker/cane thing. Lost weight, gained weight, lost my hair, got it back. Been sicker than I ever thought I'd get. At one point, really, truly believed I was on my way "out".

Well, I'm back on my feet again. My hair is long, I do everything that I used to do (but slower and sometimes with help). I definitely have health issue's that I didn't used to have and that I will always have now. Reynaud's, polymyositis, incontinence, stomach problems, etc. etc. I had to quit working, but have taken up wildlife rehabilitation. I have my custodian license just this year, which I never would have been able to do were I still working. It pays nothing, but the rewards are many. I find I'm so busy, that I don't have time to think about what scleroderma is doing or going to do to me. I've decided that I will cross those bridges if/when I get to them.

I wonder sometimes if we think too much on those things, do we bring them on sooner than if we just live each day as best we can? There is no cure (yet), and very few answers to so many questions. Keep your head up (not so easy when your muscles are pulling it down), and always look forward. I am soooooo very thankful that I do not have it worse than I do right now. I am so aware that it could be worse and that is what I hold onto each day. Keep positive thoughts, even little ones. :emoticon-hug: Cheers - Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#5 Jeannie McClelland

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Posted 23 November 2010 - 08:31 AM

Hi Patty,

Everything everyone has said so far is true and applies to everyone. We don't know how long we'll live (well, I personally want to outlive my mom's Aunt Marg who made it to just a few days shy of 104!), we don't know how or even if our disease will progress, and we don't know our inner strength until we are tested.

I think I'm pretty much the same as the others - I don't waste a lot of time wondering what is next in my journey with scleroderma. Sure I get scared sometimes, but after four years since I got my diagnosis and exactly the same number of days with the International Scleroderma Network, I've learned not to panic. For every horror story and statistic you read, you can find an equal or greater number of positive stories.

I don't know who said it first, but I've made my motto this: "Life isn't about waiting until the storm is over, it's about learning to dance in the rain."

I just want to mention one more thing - depression is associated with scleroderma and many of its complications. Medications (especially prednisone) can affect mood too. Also, you could be suffering from post-vacation let-down! Depression is an illness, just like scleroderma. Being depressed doesn't mean you are a bad or a weak person, it just means you are ill. Seeking some help for it is no different than going to see your doctor when you think you have appendicitis and is proof that underneath it all, you are a healthy person. So maybe think about that. Look on it as getting a dancing teacher and an umbrella. :)

Warm hugs,
Jeannie McClelland
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#6 Sandy B

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Posted 23 November 2010 - 09:46 AM

Hi Patty,

Yes scleroderma is a scary business if you let it be, if you believe you are going to get everything you read about, but we are all different and like everyone else has said, no one knows when they are going to die, the only difference is that with us there is just a good chance it may be scleroderma related.

I was first diagnosed with scleroderma and raynauds back in the mid 1990's, I now know the writing was on the wall a good thirty years ago and I am still here and intend to be around a lot longer. I will be honest and say that I do worry more for my family and the effect that all this has on them, but as for me I am a survivor and I would far rather it is me that is going through it than any one of them, at least I have some control over how I feel and deal with it and what I can do more importantly to help myself.

If you let scleroderma be the be all and end all then it will dominate your life, so try not to be scared Patty and enjoy each day as it comes and for what it is.


Take care

Sandy B

#7 miocean

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Posted 23 November 2010 - 11:55 AM

Patty,
I first heard of scleroderma years ago when my mother-in-law was diagnosed with it. I searched it on the internet and said to my husband, "this does not sound good." She lived at least 10 years after diagnosis and died a week short of her 90th birthday. Six years ago when I was suffering symptoms of scleroderma but undiagnosed I researched it like crazy and was scared to death. A doctor I went to for a diagnosis told me to get off the internet. When I did get a diagnosis and my kidneys failed. I read that renal failure was the leading cause of death for scleroderma with a life expectancy of five years. Well, six years later I am the happy recipient of a kidney! There have been advances in dialysis and treatment for kidney failure so now the leading cause of death for scleroderma is lung fibrosis with a life expectancy of two-three years. Again, I have had it for six years and I am still alive and kicking!

This forum is the best source of information. Here you will find up to date news, medical information, and real life experience of scleroderma survivors. Yes, it is a terrible disease, but it is not a death sentence.

Some interesting things that happened today that relate to this:

I was talking to my nail tech about positive attitudes and how they affect you, especially when you are sick. Two people she knows were diagnosed with the same type of cancer at the same time. One researched it, changed her diet, and most importantly, maintained a positive attitude. She is still alive today. The second did nothing to change her lifestyle, was negative and passed away a couple of years ago. So a positive attitude is essential. :happy1-by-lisa-volz:

I started using a transplant forum as well for the same experiences and results. A survey is being done by someone in Japan about whether support forums for transplants have helped you. I took the survey. One of the things that came up repeatedly was questions regarding whether the forum made you nervous or upset. That surprised me because they have always comforted me. If a forum is making you upset, DON'T USE IT!!! I tried another scleroderma forum in addition to this one but found it unprofessional and pushed a specific protocol. I haven't looked at it in years.

Stay positive, be proactive, don't over research and take one day at a time. Continue to read and post your concerns on this forum. Everyone is so helpful and encouraging.

Best wishes :excl:

miocean
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#8 NorthStarHope

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Posted 23 November 2010 - 01:21 PM

Hi Patty

Seems everything out there is scary these days, but on a positive I thought I would let you know that I talk to a lot of people each day, and just a few days ago I talked to a woman who had a dear friend with scleroderma. She told me her friend lived to be 88 years old. This hit a very positive note with me.


Take CARE,
Sincerely, northstarhope*

northstarhope* :emoticons-i-care:  :thank-you: 


#9 susieq40

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Posted 23 November 2010 - 01:51 PM

Dear Patty,

Everyone here can completely relate to the first feelings they had when they were diagnosed with scleroderma. First was "What is that!?" And Second "What do you do about it" and third "Am I gonna die"..well at least that went through my mind.

The first thing I did was also get on the internet and scared the pants off myself! Looking at the morbidity rate, will scare anyone!! I mean..those words are the last words you want to hear.

Then I found this site! The support from everyone is amazing! They have gotten me through some really rough spots. I was diagnosed in 2009...but have had it for a long long time. And now have the lung issues and am on oxygen. The outcome totally depends on what type of scleroderma you have. Even that can be confusing. But welcome to our family! And I hope to get to know you better. I am a mom of 5. Three older children and two young ones we adopted. I am 43 and looking forward to many years with my family. I take things one day at a time, and enjoy as much as I possibly can.

Please come to chat and get to know everyone. I am so sorry that you have this, and know that you are not alone. We are here for you! HUGS!

Susieq40

#10 Shelley Ensz

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Posted 23 November 2010 - 04:45 PM

Hi Patty,

Just so you know, you are not alone.

As I understand it, the rule of thumb is that if we find ourselves excessively ruminating on how awful scleroderma is (in a downward spiral, so to speak) for more than two weeks, then we should discuss that with our doctor so they can evaluate us for depression or send us to counseling, or both. Many of us need more than support groups, even our fabulous Sclero Forums, can provide. After all, none of us are medical or mental health professionals. Whatever it takes, its worth getting our emotional reactions under control because we need all the strength we can muster to live life to the fullest today.

Think of it, if you only had one week left to live, would you want to live it all down in the dumps? Or would you rather spend it lavishing love and happiness and appreciation on all your family and friends? Wouldn't you want to savor a delicious cup of tea, feel the warmth of the sun on your shoulders, admire the crinkle in your hubby's eye when he smiles at you?

None of us have any guarantees in life; none of us are going to get out of it alive, and neither will we ever know the day or time of our passing for certain. We don't have any corner on a limited life span, because everyone has one; it is just a bit more in-the-face for us. Figuring that out and adjusting to it with grace and aplomb is one of the first hurdles we face when diagnosed with a serious illness.

The choice is ours, and ours alone, as to whether we choose to overcome it and use every weapon at our disposal to defeat sadness and hopelessness (counseling, support groups, medication if need be, reliance on faith), or whether we begin to wallow in self-pity and descend into a (possibly avoidable, if we catch things in time) deep depression. I say, it's well worth fighting for a life worth living, and living with scleroderma can be a grand and glorious adventure, filled with new friendships, new hobbies, and a million little things to be thankful for, and savor, every day.

The first step along the road is acknowledging our plight (the Sclero Dumps!). The second step is asking for help (Check that off your list.) And the third step is making a plan to build our inner strength so that we can develop the attitudes necessary to be bigger (and happier) than whatever life sends our way.

You are not alone -- and you can do it, too!

:emoticon-hug::emoticon-hug::emoticon-hug:
Warm Hugs,

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

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

#11 miocean

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Posted 24 November 2010 - 01:59 AM

Shelley,


Think of it, if you only had one week left to live, would you want to live it all down in the dumps? Or would you rather spend it lavishing love and happiness and appreciation on all your family and friends?

That was a wonderful response and something we should all keep in mind. Many of my friends and family have commented on how well I deal with everything and it has been my philosophy not to make everyone around me miserable. And, as I mentioned in another post, I really think I was in denial, a recent discovery. I did seek psychological help and went on medication for depression, primarily because I was sitting around staring into space. It was a great help when I needed it.

miocean
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#12 Patty Arche-Hueck

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Posted 24 November 2010 - 02:46 AM

Guys thanks for the reply, you really are supportive and understand the feelings. I am a positive person and have faced everything life sent to me with strength. I am a survivor of so many things and always face life with a positive and bright attitude. It is for that reason every problem in my family from grandparents to nieces and nephews always were in my lap.

About the depressions, in 2006 when I was first diagnosed with fibromyalgia the doctor gave me antidepressants and I do react to then in a very bad way, so they are out of question for me.

I am worried about my family more than about me. I know I will die one day and certainly hope to live a long quality life. That is the reason I am researching and reading other people's post and believe me some post are scary and some responses are more.

Again thanks I said in my first post you always help. Maybe I should drop the other scleroderma group...Posted Image hugs Patty

#13 Shelley Ensz

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Posted 24 November 2010 - 06:01 AM

Dear Patty,

We should all focus on doing only things that are supportive and make us feel better and help us adjust in a positive manner to scleroderma. If that even means dropping a source of scleroderma support, so be it. I mean, really, overall, support services should be making people feel better, not worse, don't you think?

Now, 'better' sure doesn't mean totally all happy-wappy and Denial City all the way. 'Better' should encompass facing facts, straight up, and learning to make the best of things from there. Sometimes, however, it's where we're coming from that's the problem -- you know, the old cup half full or half empty thing. Only you know for sure if that's the case with what you're dealing with.

But basically, if you're happy with one group, and not with another, then I'd tend to think it is more likely the group that is the problem, not you!
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.

#14 jillatk

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Posted 24 November 2010 - 01:20 PM

Patty,

As Monty Python so eloquently says, "You aren't dead yet". Shelley hit the nail right on the head - live life as if you have nothing better to do. I had a staff member this week who said she worried all weekend about a presentation she had to do on Monday. I thanked her for worrying so much so the presentation came off without a hitch. Without all that worrying we would have for sure done poorly.

What you will get from this group is support to live life to the fullest. Part of support often includes challenging and pushing one another to get up and face another day and make it the best day you can. Part of experiencing support is implementing what is offered. We all have areas of our lives that do not work the way we would like, but we all develop work arounds. We often compare notes on what is working, but at the end of the day, the work around is only as good as the person using it.

Onward!

Jill

#15 KayTee

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Posted 26 November 2010 - 11:37 AM

Thanks so much everyone for the topic and all the responses. I learn so much from seeing other people's situations and feelings; it especially helps to cope with my own. I think at some point I will seek out counseling but right now I'm coping (I think). This is definitely the right place for information and understanding. Thank you all.
Kay Tee

#16 enjoytheride

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Posted 26 November 2010 - 11:56 AM

I guess that I'm a wee bit different than most. I have always been impatient and, frankly, easily bored- a serious fault I know. But I have been scared more than a couple of times about what was happening. Very few people get "training" on how to be sick- you just figure it out as you go along.

But being a person who has never learned to accommodate unpleasantness well, I find that I get bored with being down. I actually irritate and bore myself. So I just start deliberately forgetting about worrying about the endless possibilities. After awhile I wake up one morning and am thoroughly surprised that life has potential again. It always surprises me that it just happens but I'm glad it does.

It's the Scarlet O'Hara philosophy of life- I'll think about that tomorrow.

By the way, I do find that deliberately avoiding reading stuff on the internet- even here- allows a more balanced outlook to take over. I suggest reading about stuff but in smaller doses with breaks when needed.

#17 Amanda Thorpe

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Posted 30 November 2010 - 05:06 AM

As Monty Python so eloquently says, "You aren't dead yet".

Unless you're a parrot! :lol: Or you eat that "wafer thin mint!" :lol:
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#18 Lynnie

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Posted 30 November 2010 - 11:45 AM

Hi. I was having a pity me day, reading the posts helped me too, thank you!

About Monty Python, "Always look on the bright side of life," is a good quote I think.

:thank-you:
Hugs everyone
Lynn