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Philosophical question/thoughts


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#1 jillatk

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Posted 15 April 2009 - 08:56 AM

Since I was diagnosed with systemic scleroderma (SSc) and Sjogren's about 2 months ago (although it feels much longer than that) I have noticed that my brains rarely get a reprieve from thinking about it and it seems it always comes up in conversations. I find myself doing lots of educating family and friends, which of course keeps me totally wrapped up in the thoughts, feelings, etc. So I am wondering if over time this will settle down and would love to hear how others are adjusting to having a life long, terminal disease.

My mortality seems so much more present and real and has pushed me even further towards a life of no regrets. I have always lived with no regrets, but knowing that the bottom could fall out of my health at any time has really pushed me further to not wait to do the things I want to do. Sometimes while doing these things I can forget about the disease, but it always finds its way back to the forefront of my brains. I am wanting to figure out how to live with this disease without becoming this disease.

Thoughts, experiences??

Jill

#2 Kamlesh

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Posted 15 April 2009 - 10:57 AM

Jill,

It is going to take time. For me, first two years of Scleroderma were the worst years of my life. If I were you, take tiny positive steps and try to stop thinking about it.

First and the most important is to start aggressive efforts to control Scleroderma. It took me three years of 3000 mg Cellcept. Now I am much better at health front.
Kind regards,

Kamlesh


#3 Penny

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Posted 15 April 2009 - 11:00 AM

Jill,

This discussion reminds me a bit one the one Jeannie started on 'what would you most like to keep", because the truth is that no one really knows when lightning will strike and something that we have always taken for granted suddenly vanishes.

I used to mourn my different losses until someone gave me a mental 'slap' so to speak and reminded me that even if I could no longer do those things (like training horses and showing them or belly dancing) I have done them and those memories are mine to keep.

I used to live in the world of "maybe someday", where I would make future plans to 'someday' try or do something different, exciting and new. Then I became sick and I lost the chance to do a few of them, possibly ever.

Now, if there is something I want to try, I just do it and hoard those new memories like jewels. I still set goals of "maybe someday", that is a hard habit to break, but I do not let that diminish in any way the things that are already treasured memories... my I dids.

Family and friends will always bring up what is going on healthwise for me, and yes, at times I get a little frustrated because it seems to drag me back to thinking about it, but they are asking out of concern and love. I just try to be the best ambassador of me I can be and at the same time gently spread the word about orphan diseases and why more people need to know about them.

Just remember that you have Scleroderma, it does not and will never have you.

#4 Shelley Ensz

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Posted 15 April 2009 - 11:11 AM

Hi Jill,

I feel for you! Give yourself some time and space to adjust emotionally. It all happens in its own due course.

Plus, this is a time for cramming information in order to learn how to deal most successfully with scleroderma. If you are arming yourself with knowledge, understanding and support, then it is time well spent. However, if you find you are just sinking into despair, as some of us do, then try to get some counseling to help over the initial rough spot.

Many of us find hobbies to be a great healing source and they help also by providing distraction, as well as something we can talk about with healthy people, who may quickly tire of hearing about our ailments. So I took up old hobbies that I could still handle and developed many new ones, as well. I think it's important for our self-image to think as Penny said, that I may have scleroderma but it doesn't have me.

As part of the introspection process, look for things you don't like to do or people you don't like to see, and stop doing those things or seeing those persons unless it is completely unavoidable. Replace that with new hobbies. Use some computer time surfing for ways to improve life or ways to increase happiness, instead of sclero-all-the-time. Think outside the box. Give yourself that direction to go in, but also give yourself time and space to get there.

This is a lot to deal with, any way you look at it. And we are all here for you!
Warm Hugs,

Shelley Ensz
Founder and President
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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.

#5 lizzie

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Posted 15 April 2009 - 11:51 AM

Hi Jill, I think the process you are going through of being totally taken up with thinking/talking about scleroderma is something a lot of us will identify with. I know that when I was first diagnosed, just about 3 years now, I was similarly obsessed. I think it is a natural stage in coming to terms with things, but it does get easier. Scleroderma is obviously very much in my mind still (the fact that I am a frequent visitor here is evidence of that), but no longer dominates my thoughts and I can truly say that having scleroderma no longer worries me. It is a nuisance having to fit in my fairly frequent hospital admissions and appointments, not being able to going to outside events in cold weather, and at times feeling too tired to socialise, but I still manage to work, have just completed a doctorate and do most of the things I want to do. I note that you refer to "adjusting to a life long terminal disease". I prefer to think of scleroderma as a life long chronic disease which may impose some restrictions and requires some adjustments but for many it will not be terminal. So don't let the fear of what might happen stop you from living life to the full.

Lizzie

#6 living linda

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Posted 15 April 2009 - 01:25 PM

I know what you're saying. I have lived with sclero and all the fun things that go with it for over 15 years. At first the disease consumed me. I would get so frustrated because nobody seemed to understand just what my problem was. Today I honestly go days and don't even think about it. It has just become my way of living. I am reminded when I see a picture someone snaps of me, or if I catch a glimpse of myself in a mirror. I am so sorry you are going through this. It is difficult not to think about it especially in the beginning. Maybe some pamphlets would help for those who have the most questions, I think I gave some out in the beginning. I think my biggest problem was the way people treated me. I don't want to be treated like poor you. I hope I have helped a little. It will get easier.

#7 ozzy69

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Posted 15 April 2009 - 03:06 PM

Hi Jill,

I agree it has so hard not to get consumed. I was diagnosed in Sept. 08. At first all I could think about was how the sclero was going to effect me. I did so much research. Not knowing what is going to happen is scary for anyone. I have gotten better. Most of the time I don't think about it and I try to make the best of everyday. My worst days are when something new pops up and it is frustrating trying to figure out what is going on with my body. Winter has been harder because every time I look at my hands my Raynaud's is so bad that it is a constant reminder of the sclero. I do notice that when I get into days of not feeling well, that I am more emotional about the sclero. I call them my weeks of flare but I heard we don't have flares.

I am sure there are stages that we will go through with disease. Hopefully it will get better for you in time. It does seem like time is helping me. I actually use exercise to help ease my mind. I take a dance class that I love. Sometimes I am sore and hurt all over but it helps my mind. On days that I am too sick to do, I feel worse because my body gets so stiff. It has really kept me going for now.

Your not alone.
Many hugs,
Nina Lynn

#8 jillatk

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Posted 15 April 2009 - 04:18 PM

I appreciate everyone's response and thoughts. I am aware that it is always on the back of my mind, even when I am fully involved in another activity. I went for a nice long hike with my husband the other day and it was the first time since my diagnosis that we did not talk about the disease at all. We were able to just notice all the changes in the foliage along the way that is coming with the warming weather. Having a temporary reprieve really brought it home to me how often I am actually thinking about it.

One of the things that really throws me is that I never really felt sick. I was totally stunned by this diagnosis. I was just having random weird symptoms that I finally mentioned in passing to my doctor - mostly because it was getting in the way of my favorite activities - climbing in cool weather and riding my motorcycle on a cold day. It made me feel disconnected from my body. How can I be feeling okay at the same time my body is attacking itself. Almost as if I can no longer trust my body or my sense of my body. It has resulted in almost constant attention to every little thing that is going on and a thought about maybe this is another sclero thing. Then I remind myself of Freud's famous saying, "Sometimes a cigar is just a cigar".

I am starting to get some distance from it, but I suspect it will always be knocking around somewhere in my brain. As I am scheming summer climbing trips, accomodation of the disease is present. That is just a new experience. Previously the only thing that interfered was how much time I could manage to wrangle out of work and how many miles I could cram in the days I have.

I am not so much disturbed by the experience as I am aware of it and observing the process of making sense of something that really makes no sense. It is a bit of a bind - needing and wanting information, support etc and spending time on the internet at sites like this, and then needing time and space from it. I think that balance will likely shift as time goes on, with increased need for info and support and then less of a need.

Jill

#9 Jeannie McClelland

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Posted 15 April 2009 - 05:46 PM

Hi Jill,

When I hit a bad patch, be it emotionally or physically, I remind myself that everything changes, nothing remains the same. Things might get worse, but they might also get better.

After spending far too long reading about every possible complication (whether I had it or not) and only retaining the frightening things, I had to take a step back and look at how I was processing all this new information. Then I went back and had a second look at the same information, but this time from a more objective point of view.

For a start, there have been enormous strides in treating all of the complications. There was a study documenting Changes in Causes of Death in Systemic Sclerosis over a 30 year period from 1972 to 2002. Renal crisis/failure used to be the #1 killer and with the advent of ACE inhibitors and dialysis, the number has dropped to approximately 6% according to the study by doctors. Steen and Medsger.

Pulmonary complications have taken top place, but the numbers are dropping there too. Pulmonary hypertension medications have also taken a leap forward. The medication I take is a simple, once-daily tablet and has brought my pulmonary hypertension under complete control - my pressures are now normal. This medication was only introduced in 2007.

Another thing is to keep in your mind that although statistics are published regarding morbidity and mortality within specific groups of patients, which are relatively easy to calculate because of the circumscribed data sets, you don't see the statistics for survival within the universal data set of all scleroderma patients. I suspect that at the present time, it's quite good. (I could be wrong, I'm neither a statistician nor a medical researcher, but I am an informed and observant patient.)

I suppose I'll always have an awareness of the disease floating in the back of my mind too. But it's gone from fear and sadness to a more healthy state - what do I need to do to keep myself as healthy as possible for as long as possible? The longer we stay well, the more advances medical science will make, which in turn improve even more our odds of living to be run over by a bus.

Warmest hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
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#10 epasen

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Posted 16 April 2009 - 09:04 AM

Jill, I totally felt the same and did same things as you in the past when this thought of actually having a disease first hit me. In my case it has stopped, or at least I'm not doing it as much as I used to. It's just something we all have to accept, that sclero is a part of our every day lives.

Take care,
Emmi

#11 debonair susie

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Posted 16 April 2009 - 12:00 PM

Hi jill,

How you are thinking/feeling is not at all unusual. I believe it's a built-in coping mechanism.

It's great that you are helping your family better understand what you are living with. As time passes, I really feel all of you will better be able to help get the word out about Scleroderma! Even though there seem to be many of us with Scleroderma, etc., there are many others who are not even aware that it exists, let alone know WHAT it is.

As so many before me have said, things will get better, jill.

{{Soft Hugs}}
Special Hugs,

Susie Kraft
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#12 Honey

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Posted 17 April 2009 - 04:07 PM

Hello, Jill.

I, too, am recently diagnosed with systemic scleroderma, and as a fitness instructor and personal trainer for 27 years, I was shocked that it could happen to me. I was extremely healthy body, or thought I was.

Although I have had to retire from my personal clients and can only teach Gentle Yoga and Line Dancing in lieu of the step aerobics, cycling, and strength classes I used to teach. I have many caring family and friends who support me and Send good thoughts my way through this life-change. Therein lies my strength.

I encourage you to live one day at a time. Be grateful and thankful for each new sunrise.

Kind regards,
HONEY

#13 jillatk

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Posted 17 April 2009 - 06:02 PM

Honey,
Yup, living each day to the fullest is the best we can do. I surely love life and live it to the fullest at every chance. At the same time I am aware of this cognitive process that seems to need to unfold inside my head. Talking with folks is helpful in making sense of the process.

Jill