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Nobody Understands


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#1 dimarzio

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Posted 07 February 2016 - 07:00 AM

Isn't it hard when you have a disease that nobody understands. If you have cancer or heart trouble people know you are in distress and understand, but with limited scleroderma (LSSc) nobody has ever heard of it and you feel quite alone as nobody understands how or why you are suffering.

 

When I visit my GP or have had to go to an emergency department, it's quite clear that the doctors have no idea of what it is and just chastise me for reading sites like this one.  It's as if they are too embarrassed to admit that they have no idea of this disease at all.

 

The only person who has any idea is the Rheumatologist and he's just made an appointment for me in 7 months time (a lot might happen in 7 months).  He has however ordered esophageal tests, lung function testing and a heart ultrasound (not sure what a heart ultrasound is likely to show).

 

My friends and family switch off as soon as I try to explain it and the doctors simply want to ignore it and put it down to lack of exercise (as I've said before, I do a fair amount of walking, so long as the weather is fine - min 30 minutes but sometimes 60 or 90.  At 57 it's hard to do much more strenuous).



#2 miocean

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Posted 07 February 2016 - 11:44 AM

Dear dimarzio,

WE understand. I am fortunate to have a husband who is very supportive, although after 11 years is going through caregiver burnout.

I recently had heart surgery, my lung fibrosis has increased. I have pulmonary hypertension and I am currently on oxygen pretty much 24/7, my GI tract is all screwed up and I have occasional  fecal incontinence. I've lost 37 pounds the past 9 months because I have no appetite. My skin hangs on my body like crepe paper. 

 

Yesterday I went to a birthday party for a dear friend. It took me almost two hours to get dressed and put on some makeup. I was pretty exhausted starting out. I have another close friend who attended who has several autoimmune conditions including celiac disease and Hasimoto's  and we were talking about how no one really understands and how everyone is always telling us how good we look. We took a group picture and put it on a social media site and sure enough, everyone was commenting on how good we looked. We were cracking up! 

 

I planned a down day for today because I knew I would be worn out so I stayed in bed all day and just got up and it is late afternoon. I have a sister who has a hard time with my being sick and doesn't like it when I stay in bed all day. That is her problem, not mine. Fortunately, she lives far away.

 

The doctors are another story. The heart ultrasound your doctor ordered can check the pressures in your heart/lungs and see if you have pulmonary hypertension, as well as seeing how the valves work.  All you can do is try to educate them about scleroderma. There are brochures available  from this site that you can give to people. The doctors I go to are associated with hospitals that  are teaching hospitals and the good news is that they are educating the new residents and doctors about the disease. 

 

We are here for you on your journey. 

 

miocean

 


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#3 Sweet

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Posted 08 February 2016 - 06:21 AM

Dear dimarzio,

 

Awe, my heart goes out to you. As I read your note tears came to my eyes. WE get it. I'm glad you're here among friends that understand. Feel free to voice your concerns here. We ill listen, understand, and support you.


Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#4 Shelley Ensz

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Posted 08 February 2016 - 12:32 PM

Hi Dimarzio,

 

Yes, we all agree with you. We're all in the same boat here. Like Miocean and Sweet have already said, we get it, and we are all here for you.

 

:hug-group:


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.

#5 Oshawnessy

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Posted 11 February 2016 - 07:56 AM

I see where you're coming from and my family doesn't want to listen when I try to explain it but I have found that the paramedics want to learn more about it. So I enjoy telling them. The doctors I've encountered know more about it than I do and they just want to help. But keep your chin up. More information is surfacing. Oshawnessy

#6 Joelf

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Posted 11 February 2016 - 09:30 AM

Hi Oshawnessy,

 

Welcome to these forums!

 

I'm pleased that you were able to join our community and hope that we can offer you help and support.

 

Kind regards,


Jo Frowde
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#7 Shelley Ensz

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Posted 15 February 2016 - 08:18 AM

Hi Oshawnessy,

 

Welcome to Sclero Forums!  I'm glad that you found us and hope to hear more from you.

 

:hug-group:


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.

#8 dimarzio

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Posted 18 February 2016 - 08:18 AM

Apparently all of the following are figments of my imagination:

 

Dreadful hip pain that wakes me up several times each night.

Faintness, where I'm falling about and unable to keep my balance.

Raynauds where skin is cold to the touch right up to my knees and elbows, but I can feel the cold into the upper arms and thighs.

Cramping - especially in the legs

Swallowing - gripping pain at both the top and bottom of the esophegus and sometimes choking.

Reflux - sometimes worse than others but often occurs 60-90 mins after going to bed.

 

I live with people, but it's like being alone with these symptoms.



#9 Sharonjean

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Posted 22 February 2016 - 01:25 PM

Hi
I have been recently diagnosed with limited scleroderma. I have so many symptoms like lower legs and hand pain with swelling, severe stomach issues that has caused me to lose too much weight and esophagus issues. Just to name a few. I have a wonderful husband who is very supportive. I'm glad to find this site because I don't feel so alone.

Thank y'all for sharing your stories to help people like me.

#10 Joelf

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Posted 23 February 2016 - 12:58 AM

Hi Sharonjean,

 

Welcome to these forums!

 

I'm sorry to hear that you have been recently diagnosed with limited scleroderma and are suffering so many unpleasant symptoms. I've included a link to our medical page on Gastrointestinal Involvement, which I hope you'll find helpful and informative.

 

We do recommend that our members, if possible, consult a listed scleroderma expert, as this complex disease does require specialist knowledge and expertise, in order to receive the best treatment.

 

I have limited scleroderma for the past six and a half years which thankfully seems to have settled down a bit now; scleroderma does tend to wax and wane and affects everyone differently, which is what makes it such a difficult disease to diagnose and treat.

 

Please do keep posting and let us know how you're faring.

 

Kind regards,


Jo Frowde
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#11 Shelley Ensz

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Posted 23 February 2016 - 01:07 PM

Hi Sharonjean,

 

Welcome to Sclero Forums!  I'm so glad that you've found us. As part of our community, you never need to feel alone in dealing with the effects of scleroderma. Although each of us experience the illness differently, with varying symptoms and progression of various types of scleroderma, we all know how it is to have a health issue to cope with.  Here's a welcoming group hug, just for you:

 

: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.

#12 Tully

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Posted 04 March 2016 - 09:52 PM

Hey dimarzio,

 

Well get used to the fact that most people and some folks medical field have no clue what SD is, what it is doing to your body and how cruel and deadly this disease is. Over time, I have found it easier just to explain it as a form of arthritis and just leave it at that. You'll learn how to spot the difference between the ones that care and the ones that are just nosey.

 

I would suggest you go to a specialist that deals with SD a lot. As you've noticed, a lot can change in 6 months. I kick myself a lot for not getting the bone marrow transplant done sooner.

 

Also, if I go to bed within 3-4 hours after eating, I take some antacid or the reflux will get me



#13 Amanda Thorpe

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Posted 08 March 2016 - 01:10 PM

Hello All

I have had diffuse scleroderma since 2007. I am wheelchair dependent with subsequent atrophy of the calves, have ulcers that take years to heal (my feet and lower legs have been in dressings for 5 years) I have sclerodactyly, pain that cripples me, myocardial fibrosis, heart failure, biventricular ICD, fatigue and an uncertain future. How can anyone outside understand that? I've no idea but I still want them to.

As for doctors, it's ego not fear that rules their world, based on my experience, of course.

Places like the ISN are a haven for me and you and those who came before and those who will come after. Thank you all for being here.

Take care.
Amanda Thorpe
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#14 dimarzio

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Posted 10 March 2016 - 08:36 AM

Blimey Amanda - how do you cope with all of that?

 

How can you concentrate on posting on the forum with all of that going on?

 

What medication are you taking?  I can't find anything off the shelf that helps much.



#15 Amanda Thorpe

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Posted 10 March 2016 - 12:16 PM

Hello Dimarzio

I marvel that any of us even get outta bed but we do cause we is fabulous!

I take a whole slew of prescription medication, having said that, it's less than in the early years and I am eclipsed by many here with way more meds and worse symptoms than me.

Your comment made me laugh, thank you and take care.
Amanda Thorpe
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#16 Sharonjean

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Posted 20 March 2016 - 10:01 AM

Hi
I haven't been on in awhile and I am trying to find out how to set a profile pic and learn how to navigate. Thank y'all for the warm welcomes. It made me smile.

#17 Joelf

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Posted 20 March 2016 - 10:47 AM

Hi Sharonjean,

 

We have lots of information about Creating a Forum Avatar  in our Welcome: Guidelines and FAQs Forum, which also includes our guidelines and other handy tips to help you enjoy the Forums.

 

To navigate from one forum to another, just go to our Main Forums Portal, and click on the Forum you wish to view. We have a search engine on the top right hand side of the page, which will enable you to search the Forums, or if you click on the "Search Bar" at the top of the page, that will enable you to search our medical and support pages.

 

If you are having a problem uploading an avatar, then please do let me know and I can upload your avatar picture for you.

 

Kind regards,


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#18 Sharonjean

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Posted 20 March 2016 - 10:51 AM

I think I got it! Yay! Lol, thank you for your help. :happy:



#19 Joelf

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Posted 20 March 2016 - 11:02 AM

Hi Sharonjean,

 

Indeed you did and a super picture it is too!! :woo-hoo:


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#20 Sharonjean

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Posted 29 March 2016 - 05:15 AM

I don't think anyone understands unless they have this. With that being said my life is filled with family and friends who are supportive. I love them for that. But it is easier talking here with people who know my pain and understands with out a detailed explanation. I hate we all have to go through this but I'm glad we can talk to each other.