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Support for the tough times


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#1 Jac

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Posted 07 June 2013 - 11:08 PM

Hi there - (if this is in the wrong place, I apologise and please move it) -

 

I wonder how people cope with some of the emotional backlash of this disease.

I try and be positive but there are times - often at night when I can't sleep, I just dissolve and feel hopeless and useless and in pain and alone etc.

 

I have a Mum who is a great support but she does not live with me - I live alone.

 

So how do others cope at times when it really hits you and just knocks you for six?



#2 miocean

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Posted 09 June 2013 - 04:57 PM

Jac,

 

:balloons:  WE THROW A PITY PARTY!!  :balloons: 

 

I'll bring the ice cream...who's in? 

 

Seriously, there is actually an entire area on pity party, go to Medical Pages and put in a search and see what comes up!  :D

 

We all dissolve or break. Everybody does, not just those with scleroderma or other chronic diseases. You have a right to and should honor those feelings. Somehow or other we are able to pick ourselves up and work through it.  Try pampering yourself with a special treat,  for me it is the ocean and sky that soothe. There are times we need to rely on help from professionals if we can't get through it ourselves.

 

It must be hard living alone and you are lucky to have your Mum. A good group of friends are important, too. Unfortunately many of my friends are busy living their own lives so I do go to a professional to talk things out. 

 

Thinking of you,

miocean


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#3 Jac

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Posted 10 June 2013 - 11:21 PM

Hi - I like the idea of any kind of party, as long as there is lots of ice cream!

 

Had a really difficult appointment yesterday which has made things worse. I saw my GP and explained some of the side effects of medication I'm on and how it is making other symptoms worse (in my opinion) - I didn't expect the following response - 'Well when you have a chronic long term illness it's easy to over-analyze every ache or pain you get and you even begin to imagine things that might not be there.'  To which I responded - oh so this is all in my head then, the fact I have skin hardening on my arms, hands and legs is all in my mind, the mis-shapened joints on my hand are an illusion (because of rheumatoid arthiritis), the fact I spend most nights bringing up acid and having burning pains in my chest as a result, that's not really happening, I'm dreaming it am I? etc etc.

 

I need to change doctors, I think - but it made me feel even lower and that nobody has any understanding of what I'm going through.



#4 judyt

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Posted 11 June 2013 - 02:44 AM

Hi Jac,

 

Well, there are some of us here who know how you feel.   At least you have a diagnosis and there is the hope of some treatment for you as long as you can find a sympathetic doctor.

 

I do  know what it is like to go through years and years of developing symptoms with nobody being able to recognise what was staring them in the face.   Admittedly I didn't have any skin involvement to speak of but I did have Raynaud's from the age of 22 and before that some GI issues and later on bowel dysfunction and a restricted Oesophagus and some Sclerodactyly but it took until 2003 when I was 59 to have the light come on in somebody's eyes.   I am inclined to think that it was partly that for a long time not many practitioners knew what they were looking at but it is frustrating to be sent home with a flea in your ear because you are imagining things.

 

Look for somebody more sympathetic, ask around who your friends and neighbours recommend as a GP and definitely stick with a Scleroderma Expert for the big stuff.

 

Chin up, enjoy the 'party'

Judyt



#5 Joelf

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Posted 11 June 2013 - 06:08 AM

Well, I'm always up for a party, regardless!!

 

I'm sorry to hear that your doctor was so unsympathetic; it certainly doesn't help when you're feeling pretty rough to have someone from whom you should be getting help and advice, belittling your concerns and making you feel as if you're wasting his time. I think I would be looking to see another doctor in the practice or even change practices if needs be.

 

You have to hang on the fact that you're not making it up and you will be getting the help you need, once all  your tests are completed.

 

:emoticons-group-hug:

 

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#6 Shelley Ensz

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Posted 13 June 2013 - 09:28 AM

Hi Jac,

 

We know very much how you feel.

 

It used to bother me a lot that people didn't seem to "understand" what I was going through. Then it dawned on me that it was a two-way street, because I also didn't understand what they were going through, either. So I spent more time trying to walk in other people's shoes and more thought trying to figure out how they were experiencing their world.

 

It's truly amazing how we all live inside our own little worlds, thinking that the whole world revolves around us.  Every single one of us sees the world only through the filter of our own experience, so even if we are identical twins in identical situations, we can still experience it (understand it) differently.  Much of the appeal of books, movies, plays, entertainment of all sorts, is about seeing the world through another person's perspective. But even that is just temporary and as soon as the book or movie (etc.) is over, we are back to living in our own little world.

 

The fact of the matter is, we are the only ones who can truly understand what it is like for ourselves. Once we accept that, we can stop looking for others to "understand", simply because they cannot.  How could they, unless they were born with the same genetics, had the same parenting and life experiences, and thought about everything exactly the same way?  Even identical twins could both look at a red flower, and one could say it reminds them of love and is fragrant, while the other could say it reminds them of blood and stinks horribly.

 

One thing we can all understand, though, is that no other person really understands, which is where spiritual beliefs fill the gap for many of us. Bottom line though, we are alone, and we die alone, except for conjoined twins who share the same brain.

 

Also, I am pretty sure you realize this already and that you don't waste much time and energy harboring a lot of unrealistic expectations. I think you just used a common reference, and that you really are not looking for understanding from your doctor.

 

My perhaps rash conclusion to this is that you were probably actually hoping for a little more logic.  Like, a rational discussion of the possible side effects of the medication you are on and help deciding whether you should hunker down and grin-and-bear-it with the side effects, or try another treatment. You did not want your doctor to skip out of the whole issue with an easy-breezy blame-the-patient discussion, as though you were wasting their time trying to describe what you think are likely medication side effects.

 

You have us for understanding, sympathy, empathy, compassion, and all that stuff, at least, we give it our best shot, same as you do for us. 

 

To my way of thinking, your doctor actually met your report of possible medication side effects with an emotional response, whereas I think you were looking for a logical response.  It might help to clarify that before you go looking for another doctor, as you might think you need someone more sensitive emotionally, however you might actually be looking for someone who is less emotional and a bit more logical, to guide your medical care.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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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 Jac

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Posted 13 June 2013 - 11:07 AM

Hi - thanks for that.

 

I think what I wanted from my doctor was a logical response - a way forward to coping with the symptoms of this disease and also the side effects caused by the medication.  I don't expect her to understand what I'm going through but as a professional with a duty of care towards me as a patient I expect either suggestions of how to deal with things or a referral to someone else who can help me.

 

One of the difficult things is every time I have some treatment or go to the hospital people think - oh you must be better now. It's quite difficult explaining the concept of long term chronic illness, especially one that no-one has ever heard of.

 

But on a more positive note - I have felt well enough this week to do a little bit of swimming and walking which always makes me feel brighter :emoticons-clap:  - I figure if I can eat a good diet and exercise (gently) it will all be for the good!



#8 miocean

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Posted 13 June 2013 - 03:48 PM

Oh, can I relate to that! Only for me it's not just the multitude of doctors, its friends as well. Many think because I got the kidney transplant that I am "cured." I was just talking with a friend and when he asked how I was doing, I told him about  going to be evaluated for a lung transplant and he said, "I thought the kidney transplant fixed everything." I had to explain that scleroderma is a progressive systemic disease that has damaged many of the organs in my body...

 

I encounter this all the time. I look healthy. The only thing that gives a clue that I have an illness is now I have oxygen therapy and have a cannula up my nose. 

 

So Jac, I get it.

 

miocean


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#9 judyt

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Posted 13 June 2013 - 07:04 PM

Hi,

 

Just as a 'for instance' (or as my father used to say 'for argument's sake')  at the moment my friends, and even my doctor says,"it is good to see you looking so much better ".  When all the while I am feeling pretty exhausted and a bit fed up.   I am growing an ulcer on my ankle again and it hurts, I have a plantar wart on the sole of my the same foot and it hurts too!! :crying:   I have another raw patch on my leg which is itching like mad and bleeding, becoming inflamed so I am afraid of another bout of cellulitis!!

 

I know I  look better because over the last 6 months I have put on a bit of weight, my Haemoglobin is back somewhere near average so I have better colour in my face and yes I am a bit fitter than I was.   

 

Most people might have some or all of these little things going on and just shrug them off as part of 'life' but on top of everything else we have to cope with it starts to make the molehill into a mountain.   Somebody sympathetic and gentle who can accept our rants in the vein they are expressed is as helpful as a warm hug  so I would like to share a whole heap of them with all of you. :emoticon-hug: :emoticon-hug: :emoticon-hug: :emoticon-hug: :emoticon-hug: :emoticon-hug: :emoticon-hug: :emoticon-hug:

And I get it too.

 

Judyt



#10 Shelley Ensz

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Posted 14 June 2013 - 07:26 PM

Oh yes, I sure do know the feeling. 

 

The funny thing is, after awhile, most of us tend to give up trying to explain anything to most people. We try to find something, anything, other than illness to regale people with.  We respond to how we are doing by shrugging it off with "Fabulous!" or "Just dandy!" or my personal favorite, "Dynamite!". We talk about a hobby or even the weather, sidestepping anything to do with health, which as we all know means we are sidestepping just about everything.

 

Then, people assume that we really have recovered completely from our "little bout of scleroderma". But it does feel good to not even try to explain things anymore. It's less mental effort on our part. Instead of explaining, no, I can't do this or that because of this or that symptom, we sidestep it by claiming that we already have other plans. You know, like sitting home, or in the hospital or doctor's office, recovering from our latest "little bout of scleroderma" that has lasted only, oh, what, five or ten or twenty years so far.

 

I'm really not sure that's the better solution, but I do know that it is one that many of us end up with, many times. Simply because it takes so much effort to fight city hall, to swim upstream, and to go against people's hardy expectations for us to make a full recovery from our little "bout" of scleroderma.

 

But I imagine that most of us kick ourselves in the butt for trying to actually explain to someone (anyone!) how we are really and truly doing, because it seems like such a worthless task; and by the same token, we chide ourselves for NOT telling them more about scleroderma, and how we are really doing. After all, we passed up another chance to raise awareness.

 

But there really isn't much of a happy medium anywhere. If we always greet people with complaints about how we are doing, they might easily stop asking after us.  If we always greet them with a cheery shrug off, they might be happier to see us, even though they really don't know how we are actually doing.

 

Thank goodness, folks around here really do seem to understand, whether we are being cheery or whether we are letting it all hang out, everyone here seems to "get it" that we all need to be free to have it either way, depending on the day, depending on the audience.

 

:emoticons-group-hug:


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.

#11 Joelf

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Posted 15 June 2013 - 01:36 AM

I can certainly go along with all the sentiments expressed by everyone.

 

One of my coping mechanisms is to discuss every aspect of this bizarre disease with anyone who'll listen to me. The downside of that is that it can become tedious and boring for others and as I have no desire to commit social suicide, I now counter any enquiries after my health with the words "Bearing up!" or similar. One of the best aspects of having Scleroderma has been getting involved with ISN where not only have I met the most fantastic people, whom I would never have known, but also I can research and discuss Scleroderma to my heart's content!! I was fortunate in my treatment, in that I was diagnosed quickly and was very fit at the time, so therefore my quality of life hasn't been too badly affected. I'm certainly not as fit as I was and am certainly fatter<sigh> but I really don't like to complain, especially when I hear how badly some of our members are faring.

 

I'm wearing my "Pollyanna" hat this morning!! ;) :lol:

 

Kind regards,


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#12 Jac

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Posted 19 June 2013 - 11:07 PM

You guys are great!

 

It is hard as I am discovering - I have several symptoms all of which are being treated at the same time and some are more severe than others. I have given up with people generally and I just say I'm okay if they ask how I am and then comment I hope that's what they want to hear! It's like you say, you come out of hospital after some treatment and the assumption is you are cured.

 

But I did have a lift yesterday because I went for a blood test. I have been told because my veins keep collapsing I have to have blood taken by the senior practise nurse at my surgery. I had a 20 minute appointment and she was really nice and understanding about what I'm going through. Her first comment was - what a hard time I'd had. So I shared a bit of where I was and what I was doing and she told me not to be too hard on myself and that I was doing really well.

 

I feel I could go back to her if I needed to  -she was lovely and a health care professional who I felt did care and wanted to help me.

 

Got 2 more appointments coming up at the hospital, mainly to do with the scarring and damage to my gullet and stomach.

 

I wondered if anyone has had their stomach (or anything else) removed to reduce the chance of problems occurring - I'm thinking about it, given I have a pre-cancerous condition. It would be a preventative measure.

 

Feel ok today and the sun is shining.



#13 judyt

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Posted 21 June 2013 - 01:33 AM

Hi Jac,

 

I agree that it is lovely to come across somebody who is prepared to accept that you have quite a lot going on and it is hard to cope with.   My GP is very understanding so I am very relaxed about telling her everything that is going through my head.

 

You have to try to ignore those ignorant people who try to toss it all off as not worth worrying about.   While we don't want you to actually worry too much it is a case of trying to deal with things one at a time until something near stability is reached.

 

Talking about stomach issues, I have had part of my stomach removed.   It was found that I had several stromal tumours, some of which were bleeding, so the decision was made to remove the fundus where all but one of the tumours were located.   In my case it was done by Laparoscopy which is much less traumatic than open surgery.   It was relatively straight forward and I was in hospital for only about 3 days and then the recovery at home was quite uneventful.   In the end the histology showed that the tumours were benign at the time the surgery was done.   There is one more in a less convenient situation and I have a check by Endoscopic Ultrasound every 3 years.   It is growing slowly but appears to be benign so far.   The only side effect I am left with is a reduced capacity to eat, which doesn't worry me because I always tended to be a bit heavier than I would like so now I am more or less just right.   I have to be careful not to get too thin.   There is no truth in the adage that you can "never be to thin or too rich".   Once you start to get too thin you look dreadful - believe me.

 

I would be very surprised if any surgeon was prepared to remove your whole stomach because of a pre-cancerous condition.   Of course, I have no medical training and can't even boil potatoes without burning them so am no sort of expert in anything really, but it seems to me from the discussions I had prior to my partial Gastrectomy that anything more extensive would be a major event and fraught with possible complications.

 

From what I have been told a pre-cancerous condition does not mean it is definitely going to happen and I would expect to be offered a program of regular monitoring along with other precautionary measures.   I have PBC which could possibly develop into liver cancer so  I have 6 monthly Ultrasound scans and blood tests along with  a suitable medication.   My husband has Barrett's Oesophagus and he has regular Endoscopies to monitor any changes.

 

The best thing to do seems to me to be keep up with a healthy diet, try to get as much rest as you can and at the same time try to keep fit, and keep up with all the monitoring and medications that are available to help you.   It makes for a busy and sometimes stressful life but it is worth it in the end I think.

 

Best wishes

Judyt



#14 Shelley Ensz

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Posted 25 June 2013 - 04:27 PM

Hi Jac,

 

That's a great question. Regarding having your stomach removed for a precancerous condition, see Stomach Cancer by the American Cancer Society. It says, "Only a small percentage of cancers are caused by hereditary diffuse gastric cancer syndrome...If their family history suggests that they might, they can get genetic testing. If the testing shows the person has an abnormal form of the CDH1 gene, many doctors will recommend they have their stomach removed before the cancer develops."

 

So be sure to talk to your doctor about this issue and also read that article for suggestions on ways to reduce your risk. Generally speaking, many of us have precancerous conditions that never develop into anything life threatening, although it is always quite disturbing to initially learn about it.  Some of us could be cured with a whole body transplant <yeah right>, but generally there's not much of anything we can do about it, besides living as healthfully as we can manage and having the recommending screenings. 

 

But Miocean actually wasn't joking at all about throwing a Pity Party when we feel bad.  We really do!!

 

In fact, our website is home to the World's First Virtual Pity Party.  The party started on January 9, 1999, because I was feeling too lonely at my own pity party, and it has been going in full swing ever since, with a few timeouts when party-goers were hungover, passed out, or caught having too much fun and thus evicted from the premises.

 

The party includes appropriate music, such as "It's My Party and I'll Cry If I Want To!" and even a Meditation for Depression if we are in danger of feeling too happy at the moment.

 

Please go visit it and let us know what you think, and whether or not it was just what the doctor should have ordered for you.  Also please keep us in the loop regarding your stomach issues, okay?

 

:emoticons-group-hug:


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.

#15 Amanda Thorpe

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Posted 26 June 2013 - 02:24 PM

No, no, Shelley! It's my disease and I'll cry if I want too!! And I want to cry!!

 

Goodnight!


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#16 Jac

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Posted 27 June 2013 - 12:02 AM

Hi,

 

Yes I will let others know how the stomach thing goes.

 

There is a high incidence in my family history of stomach and bowel cancers so I will need to be tested for that genetic disposition I suspect but it is because of this I'm considering ALL my options.

 

I see the gastroenterologist in August and I am fortunate to have a super consultant who has so far been very understanding and helpful.

 

Might go join the pity party next time I have a difficult day!