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Sandy B

I'm happy today because....

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Hi Jac,

 

I'm so pleased to hear that everything went smoothly and I do hope that the results of your biopsies turn out okay.

 

Hope you enjoyed your lunch as well!! :)

 

Kind regards


Jo Frowde

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International Scleroderma Network (ISN)

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I am happy today because I cried.          :crying:        

 

I know that sounds very strange but I haven't been able to cry since 2004. I can clearly remember the last time I cried, I was in the hospital after the scleroderma crisis when I stopped breathing, my heart stopped, and my kidneys failed. It was about my third week in the hospital and I had test after test after test with no end in sight. I was having a non-invasive sonogram of my legs when I started crying, I just couldn't take it anymore. I went back to my room and cried some more and then didn't cry again...

 

...until last night. I had a particularly difficult day. I was looking forward to a day on the beach and it was overcast and 98% humidity. The air was full of pollen and everything was green with it.  I was out of sorts and took it out on my husband.  We decided to go to a garden center and finish buying plants but even with my oxygen on it was hard to breathe. When we got home I was soaking wet, hair and clothes. I slept on the couch but when I got in bed for the night I started to cry. My husband asked me what was wrong and I wailed, "I just feel so broken."

 

I was physically, mentally, and spiritually broken. I try so hard to be strong and positive and was just done. I was sorry I took it all out on my husband. 

 

I know we are not supposed to use quotations on the forum but there is part of a poem I remember: "and in breaking I make myself whole again."

 

I am whole again.

 

miocean

 

 


ISN Artist

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Hi Miocean,

 

I am sad because you cried. :crying:

 

But happy if you feel better now because of it. :yes:

 

And I am thrilled beyond measure that tech support got our Mac/Emoticons fixed, just in the nick of time for this. :terrific:

 

It helps to reach rock bottom with stuff. The actual problem might be that you don't reach bottom soon enough, or often enough, because crying from stress helps to detoxify the body and adjusts hormone levels.  So next time you feel the urge to splurge on a few tears, just do it, and let your kind hubby know that you are just "detoxifying".  And actually you are, because stress causes toxins and crying releases them.

 

We try to discuss stressful days or encounters to see what we could do differently next time to handle any similar situation better.  Today we had two stressful events happen at the same time.  In discussing it over dinner, we decided that neither of them absolutely had to be handled right that minute.  I mean, the world still would have continued turning on its axis at 1,000 mph even if we had gone on strike for a few minutes to think things over.  Fifteen minutes would have been about 250 miles of world progress even if we hadn't lifted a finger, right?  If we had just taken a few minutes to step back and analyze things, we could have come up with a more relaxed approach instead of elevating our adrenaline levels.

 

Next time the beach is suddenly cancelled on you, see if you can replace it with another endorphin-raising event.  Perhaps a romantic afternoon at the movies in air conditioning would have been more welcome, and easier on your nerve endings. But, life happens, stuff happens and we are all great Monday-morning quarterbacks, aren't we?

 

Good on you for crying.  It's oddly refreshing, isn't it? 

 

: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.

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I think I'm still happy - :emoticon-dont-know:

 

I got the results from all my GI testing:-

 

I have gastro-oesphagus refulx disease (which I had guessed) and there is some scarring in the gullet which is hardening and may need some treatment (stretching I guess) at some point.

 

A few problems with my stomach and duodenum which can be treated with meds (more meds).

 

Some inflammation in the bowel too which he (gastro doctor) says is ulcerative colitis.

 

So few problems but seemingly treatable.

 

I'm waiting to see a dietician - I'm keen to control as many symptoms as I can through diet etc.

 

I feel more relaxed about future tests now too,of which there will be many.

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Hi Jac

 

I'm very pleased to hear you're still feeling more positive and although you have got some problems going on, at least you can tackle them now you know what's happening and a suitable treatment can be started for you.

 

I'm sure it's the fear of the unknown, which is so hard to bear.  ^_^

 

Kind regards, 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Jac,

 

Wow, it sounds like you have g.i. issues from stem to stern.

 

When is your dietician consult?

 

We have a section on the main site you might want to read, about Diet and Scleroderma.

 

There are some food and lifestyle things that can lessen heartburn, see our Heartburn pages for that. Elevating the head of the bed, when done as recommended, can really help. But elevating it wrong, like by trying to elevate with pillows, will backfire because it puts more pressure on the stomach and actually worsens heartburn.  Also it does not have to be much!  One or two bricks under the head of the bed is all it takes. You don't want the bed to look like a sled, or to feel like you are going to slide right off it in the night; you only want to put a little bit of gravity to work for you.

 

Thankfully there are a lot better treatments for ulcerative colitis now, but it is still no walk in the park under any circumstances.

 

: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.

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Thanks for that.

 

My diet and next Gastroenterology appointment is 14th August.

 

I am finding ways of relieving some of the symptoms already - I have cut off coffee (I drink espresso) and that has helped quite a lot. I have cut down on tea and switched to green tea. I don't drink alcohol so that isn't an issue. I have cut out orange juice and switched to apple or cranberry juice.

That has made quite a big difference.

 

I have also found that raw peppers, onions and tomatoes irritate me, which is a shame because I love salad but I can't really have them raw. But I can tolerate them cooked so can maintain a healthy diet.

 

So small changes are already helping and it's a bit of trial and error at the moment. And very much what works for me because I'm learning this disease affects us all differently.

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:lol: I am happy today because I have a medically free week coming up!!!!  :lol: 

 

:emoticons-line-dance:  :emoticons-line-dance:  :emoticons-line-dance: 

 

:woohoo: 

 

miocean


ISN Artist

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Great news, Miocean!!

 

I'm happy for you too!! :bravo:

 

:emoticons-line-dance:


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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My medically free week is over.  :(  It wasn't totally medically free because I did have to contact some doctors but I had no appointments. I also had to fill out the forms for the evaluation at the lung transplant center tomorrow and get my paperwork in order. I've decided not to worry about being perfect with it because I haven't found one doctor or center yet that has been perfect with me!

 

Ha!  :D

 

miocean


ISN Artist

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I'm happy today because we're in the wilds of Gloucestershire and I've got a half decent internet connection!! :emoticons-yes:  :great: :lol:


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi everyone, :emoticons-group-hug:

  I am happy today because I was able to visit sclero forums and wish everyone well and also wish everyone happy holidays (even thought its a bit early)

I haven't been around to often lately.  Just so busy helping my sister and stuff.  Once again I want to wish everyone the very best and hope all is well.

 

                  Take care,  :emoticons-group-hug:    sincerely  Northstarhope*


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

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I am happy today :D because I just came back fro a "dream trip!" I have always wanted to go to Niagara Falls, Canada and finally did. They are the highest falls on the east coast of the U.S (the second highest, the Passaic Falls, are actually nearby me and I have never seen them!) My husband couldn't understand why I wanted to go there but agreed to go and had a great time!  It was a 1,500 mile car trip and 5 days of traveling, sightseeing and walking but I was able to do everything I wished to do, even with the oxygen. The portable oxygen converter I have now worked so well, it charges in the car and I bought a special backpack for it to make it easier to walk around.  We had a beautiful room and saw sunrises and moonrises over the falls, rainbows in the mists, and were granted fantastic weather. Going into the falls on the Maid of the Mist and going beneath the falls into the tunnels are experiences I will always keep with me. The falls are awesome, so powerful.

 

And you know how much I love water.  :P

 

:happy-day:

 

miocean


ISN Artist

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Hi Miocean,

 

What a wonderful holiday; it sounds absolutely fabulous!! :great:

 

I'm so pleased that you were able to do everything you planned and were able to enjoy your trip fully.

 

Having good weather is a real bonus, as well! ;)

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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