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Do I really want to know?


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#1 quiltfairy

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Posted 17 November 2015 - 05:06 PM

I sat tonight and thought about all the symptoms I have now and all the pain, then I thought to myself  "do I really want to know what is next?"

 

I answered my own question with a yes for some things and no for other things.You see I have decided to enjoy what life I can as long as I can and to not spend time worrying about what is going to happen next.

 

As I have read a lot of sites it can be scary and at times has put me in a pretty bad depression thinking about it, so for now I will read what people have to say, I will keep my appointments with my doctor and take the medications he prescribes, so that I can have as much good health as I can and who really cares if I lose my hair or have bladder control as far as I know I am the only one and I will live my life just as I always have.

 

This is my statement for life at this moment. Please respond with how you feel about life as you are living it, even if it is a bad time for you. We all have them and this is a good place to speak your mind.

 

May I give each of you that choose to accept a blessing from me.



#2 Margaret

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Posted 18 November 2015 - 01:26 AM

Hi Quiltfairy......I DO understand where you're coming from.  I want to know what is in store for Gareth.  I want to know the damage being done inside, if for no other reason than just to prepare for it.  Just to know that the next organ to go will be his kidneys or his lungs, or his digestive tract.  Just to be prepared!!  I deal with every step but the *not knowing* is worse, especially since he can't tell me the source of his pain or discomfort.  He will see his rheumatologist in Dec and I will give her an update on the mess he had with his vertebra surgery.  Perhaps, she will have some ideas.

 

You are all in my thoughts daily.....I can't imagine the pain each one of you go through, mentally and bodily.  Gareth is such a happy, go lucky guy, in nature...... it's so hard for me to watch each downhill slide and try to fix it.

 

Take care, Everyone.

Margaret

Mom to Gareth, 27 years old, DS/ASD



#3 miocean

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Posted 18 November 2015 - 03:30 AM

Dear quiltfairy,

I am an optimist but I am also a realist.

 

Last week I had to return to my transplant center because I have been having issues with my 5 1/2 year old kidney transplant. At the end of the time with the doctor I asked of the likelihood of me being listed for another transplant if and when this one fails. He told me with all the medical complications I have along with my age I would be very difficult to list. I appreciated his honesty and didn't want to mistakenly think I could always get another one in the future. I have been turned down for lungs at 2 centers. My recent pulmonary function tests have my diffusion at 17%.  I've had to limit my activities because even with oxygen I feel short of breath. I am experiencing a lot of GI issues that now include some fecal incontinence. I live in a multi-level condo and often wonder how much longer I will be able to manage it and what plans for the future I should be making...

 

I actively pursue healing. I understand that healing is not a cure. It involves many factors that are physical, emotional, and spiritual. Like you, I maintain all my medical appointments and prescriptions and I practice self care with meditation and energy work (Reiki.) I go to a therapist and have chiropractic adjustments and massages on a regular basis. I do everything I love to do: spend time with family and friends, try to create new social relationships, go to the beach, travel, paint, and I am showing and selling my work. I find if I have things to look forward to I am less depressed.

 

There are days I want to hide away, wish it all away, ignore the fact that my body is not behaving itself. I give myself "medically free days" when even though I should probably be making a call to set up an appointment I don't, and I stay off forums and sites. I have learned through the years with scleroderma that there will be ups and there will be downs and to try and ride them like the waves in the ocean. I mourn the things I have lost and celebrate what I have.

 

I try and plan for the future, both the positive and the negative. And I try to enjoy the moment. 

 

miocean


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#4 Joelf

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Posted 18 November 2015 - 03:44 AM

Hi Quiltfairy,

When I was first diagnosed with scleroderma and told what strong drugs I would be taking, I was horrified (this is the person who prior to being ill hated even taking an aspirin for a headache! :wink: )

I remember speaking to an aquaintance about this and bemoaning the fact that I, who had always prided myself on my physical fitness, would perhaps not be able to be so active as previously. His reply was not to worry about what I couldn't do, but concentrate on what I could. I felt these were wise words, especially as now my joints are so much worse and that tends to inhibit me more than the scleroderma lung involvement.

I've tended to lower my expectations a bit and be pleased that I'm not so badly affected as some of our other members, so I can still get about easily and do most of the things I like. As to the future.......who knows? (I could get run over by a bus; hopefully not! :lol: )

Jo Frowde
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#5 Shelley Ensz

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Posted 18 November 2015 - 03:44 PM

Hi Quiltfairy,

 

I have decided to ask Jo to please post your quote, "I have decided to enjoy what life I can as long as I can and to not spend time worrying about what is going to happen next" for an upcoming forums banner, as that is a great idea for all of us.

 

Probably the biggest effect that scleroderma has had on me is that it has made me more grateful for the gift of life. I take fewer things for granted and I make a much more concerted effort to really and truly enjoy every possible minute.

 

For me, a focus on fun and laughter is not optional anymore, but absolutely essential. It defuses the stresses that are so inherent in illness before they have much of a chance to build up. So I have gradually become far more serious about having fun. LOL.

 

:hug-group:


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.

#6 quiltfairy

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Posted 18 November 2015 - 05:08 PM

I would be happy if Jo were able to use my thought on your banner.

#7 Joelf

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Posted 18 November 2015 - 08:46 PM

Hi Shelley and Quiltfairy,

Your wish is my command!! :wink:

It's a lovely and very positive thought and makes a great quote for our banner. :happy:

Jo Frowde
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#8 quiltfairy

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Posted 19 November 2015 - 05:21 PM

You have all given good answers; please keep up the good work.

I am making two bags, three festive stockings and four billfolds in the next month. Someone will have to wait for their gift or at least I will get them something else with the promise to get one done.

I will just add my favorite places to go holiday shopping is thrift stores and Mapleton, Iowa is the thrift store capital of Iowa. We only have six of them, plus one store where everything is free, so for now I bless each of you with happy thoughts of the upcoming holidays.

#9 Amanda Thorpe

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Posted 22 November 2015 - 12:02 PM

Hello QF

Well said that woman!

When I became ill, it was all over in 6 months so I never really had a chance to ponder what was happening to me. February 2007 and things started to go wrong, August 2007 I was unable to do much unaided and diagnosed. If I'd had say limited scleroderma, it could have taken years to become disabled and I would have had all that time to think about it.

There's something to be said for just getting on with it, which is better for the loved ones inadvertently swept up in the disease.

Yes knowledge is power as they say and we need to know what we're dealing with but reality is we DON'T know what's coming next. Not for sure. Thank goodness!
Amanda Thorpe
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#10 Tully

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Posted 11 December 2015 - 03:03 PM

Hello QF, I just joined the forum today.  I hope you're doing OK these days.  To paraphrase Stuart Scott, fight when you can and when you're too tired to fight, sit down and let others fight for you.  So hang in there and take it one step at a time.

 

As for me, exactly 5 years ago today, I was in Duke getting a bone marrow transplant.  It didn't take long to figure out that being worried about "what's next" was only adding stress and dread to a bad situation.  Everyday is struggle, but everyday is another day with my son.  It took me a while to get used to the fact that, I'll never get back to 100%.  So now I have a new 100% and if/when the next shoe falls, I'll just have to adjust to a new 100%

 

Good Luck and enjoy the holidays

 

Tully



#11 Maeve

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Posted 17 December 2015 - 12:29 PM

I just registered on this site today.  After 8 months of hospitalizations, blood transfusions, numerous specialist visits and my inability to function at home or work normally, I have finally gotten a preliminary diagnosis for my symptoms. Raynauds, Systemic Sclerosis, watermelon stomach, and the list goes on.  

 

Right now I am frustrated and overwhelmed by all these medical happenings.  I am glad to have stumbled on this site, and look forward to reading what others are experiencing.       



#12 Joelf

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Posted 17 December 2015 - 03:43 PM

Hi Maeve,

Welcome to these forums!!

I'm sorry to hear that you've been diagnosed with scleroderma and have had so many unpleasant procedures to deal with.

To feel overwhelmed and frustrated is absolutely normal after such a diagnosis and I do hope that now you've found our forums and joined our community you will start to feel a lot more comforted and less anxious.

I've included a link to our medical pages to give you some more information and advice and please do post with any queries you may have.

Kind regards,

Jo Frowde
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#13 quiltfairy

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Posted 22 December 2015 - 03:24 PM

Welcome to the forums, Tully and Maeve,

I am doing good right now; that does not mean tomorrow will be worse or better, it will just be tomorrow as it comes.

Right now I am worried about my Tony; he is a 14 year old shee-poo (dog) and I just found out he has testicular cancer. He seems to be holding on and he is going to have a great holiday. Then in January sometime he is going to the vet to stop his suffering. He takes his pain pill everynight about the same time as I take mine. I will truly miss him; he has been with me for fourteen years.

#14 Joelf

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Posted 22 December 2015 - 08:51 PM

Hi Quiltfairy,

I'm so sorry to hear about Tony.

We lost our much loved Labrador last spring and he was fourteen, like Tony. That final trip to the vet is one of the hardest decisions to make, but I always feel that it's the last thing we can do for our animals and at least we can make sure that when their time comes, they go with peace and dignity.

I do hope that you and Tony are able to enjoy your holiday together.

:hug-group:


Jo Frowde
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#15 Shelley Ensz

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Posted 23 December 2015 - 08:13 PM

Hi Quiltfairy,

 

I'm very sorry to hear about your dog Tony. It's never easy knowing that the end is in sight for beloved pets. I'm sure you'll spoil him absolutely rotten and that his holiday dinner will be just about the best ever!  I'll be keeping you both in my thoughts. 

 

:hug-group:


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.