1 September 2010


just back from the consultant. good news, no emphysema!!! yeh. bad news, ok ive got to get used to not so good news, so i will refuse to call it bad news. i have to see a bowel surgeon. for bowely problems im having, i asked if i could just wait till i see prof a, whose going to deal with my GI issues, alas no, he said he wasnt a surgeon. also due to the little blip i had a few weeks or was it a month ago? due to my pulse dipping to 36bpm i had to have an ecg which was ok for me. i was told just to fiddle around with the beta blockers if it happens again. he thought that i ended up in the hospital due to the low pulse, nope i just rode the storm out at home. also in the future there maybe a chance i need a pacemaker, oh im not even thinking that far ahead.

he seemed to know a little more about the condition so when i asked questions about why i had difficulty breathing he explained the collagen in my lungs isnt working properly, and the vascular side of things. at last he was being human. he also said just to go out and enjoy life, mmmm sounds ominous.


Coffeecup said...

Hi Em, those doctors really know how to say wrong thing! They must forget people are more than 'cases' or 'patients' and have feelings and concerns. Please try not to be worried by what he said. It sounded flippant to me. He's right I guess. When you're having so many tests and are feeling so poorly the best medicine you can give yourself is some fun and enjoyment. What he didn't know is that you're already a shining example of someone not being beaten down. You're not sitting home feeling sorry for yourself (which you have every right to do) but instead your going to Buckingham Palace and riding on the London Eye! You are amazing! It's a joy to see you having such fun :)

Love and big ((hugs)) x x x

Em said...

hi steph

thing is going to these attractions takes alot out of me, and i think its my fault at times. i think bugger it, when i went to buckingham palace i sat up for nearly eight hours with little rest. so i suffered for a week afterwards with a painful neck and a strange head!!! xxx

Coffeecup said...

Oh Em, really sorry that these trips are taking so much out of you. I like your 'bugger it' attitude so much. I only wish I was 1% as strong as you are and could say 'bugger it' too. I suppose it's a balance between doing something joyful and not doing too much. Sounds to me as if those cheery jaunts around the park and just getting outdoors into nature were doing you the most good. Honestly, I can't think of anything nicer. Just look after yourself sweet one. See you didn't write a post complaining about how you felt after. We just got the positive stuff to read. Proof of your optimistic outlook no? xx

Anonymous said...

Look into the Specific Carbohydrate Diet by Elaine Gottschall. Why do so many people with POTS and EDS have intestinal problems? I think a lot are undiagnosed celiacs. Try the diet for four days and see how you feel. see: www.pecanbread.com and www.breakingtheviciouscycle.info for info