Summer Update

3 posts in this topic

Hi Everyone,


Just wanted to do a little update on some of my past posts. I know how exciting is that! :emoticon-dont-know:


Well I decided against the surgery for my female problems, have not had an issue, knock on wood, with anything since my visit. I guess it scared it all out of me or something! So I am very happy about that and hoping it stays this way. But figured since I am not working anymore, if I do get a bad bout, I can take some pain killers and lie down with the heating pad and hot water bottle until it passes.


I have been losing weight per the doctors orders and am now down almost a stone (14lbs) in a month. Very happy with that, but I have been getting worse. It is becoming extremely difficult to breath and I am very tired all the time, and I think that may be a result of lack of oxygen. I have an appt with the specialist the first week of July, so hopefully I will get some relief from them on that.


I have taken everyones advice and tried different things to see if I had a wheat/gluten intolorence that is causing the abdominal and torso pains. But that wasn't an issue. What I did find, is that when I cut out a certain name brand cola all together, no reg or diet version, the pains have stopped! I miss my drink, but I like the no pain better so am not going to drink it anymore. My mother and grandmother always said it was bad for me, I guess I should of listened hehe


Still having a terrible time on with the acid reflux issuse, I have a wedge and sleep tilted up, I have been given different meds to no avail. And I always make sure I do not eat anything to spicy or anytime after 7pm. I had one of my bad bouts, where I think I aspirated some of my stomach contents into my lungs. I get to where I am unable to breathe and I have a horrible retching fit that lasts for about 3 mins, then I can get little breaths in but every time I breath in it triggers more spasms and retching, that can last up to a half hour. Very painful, I feel like I cracked ribs this time they hurt so bad, but Im sure it is just muscle strain from the retching. I hope when I go to the Sclero doctor they can come up with some thing for me to do to stop this, as it is VERY scarry when it happens. It feels like I am going to never get a breath in.


Well that is my update, I am enjoying the summer weather for however long it lasts this time. And when it gets really hot, I will moan and winge that it is too hot! hehe I hope everyone else is doing good and enjoying their warm weather too.




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Hello Jean

Thanks for the update, I always enjoy hearing about others' journeys!

You really need to talk to your scleroderma expert about your reflux as there are a whole range on medications they can try. You also need to keep a note of what you eat and when to determine whether a particular food, or eating at a particular time is making things worse. Finally you could consider surgical options.

Hot summer? Where! I was here one day and gone the next! laugh.gif Maybe it will return!

Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Jean,


Thanks for the update; it sound as if overall there are a few more pluses than minuses! :emoticons-yes:


Congratulations on your weight loss :emoticon-congratulations: I know (none better!) that it does require such a lot of will power and determination, particularly giving up something like the fizzy drink that you really enjoy.


I do think that controlling your diet is quite important; I have a friend who was able to improve her unpleasant gut problems by modifying her diet to reduce the fibre, fruit and chocolate. I've included a couple of links about diet for Gerd and Heartburn which I'm hoping might give you some more information to help you as that does seem to be one of your most troubling symptoms.


Sorry to hear about your breathing problems, Jean; I can empathise as before I was diagnosed one of the main symptoms I suffered was a shortage of breath particularly on exertion, which, as I was very fit at the time, worried me no end. It's a good thing that you have an appointment with your Sclero specialist at the beginning of July; hopefully he'll be able to advise you and perhaps suggest something to help with both the reflux and breathing problems you're experiencing.


As Amanda experienced, our hot weather does seem to have gone AWOL for the present although the garden looks a bit fresher for the rain. We don't want the next three months of it though!! :blink:

Jo Frowde

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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