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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Sunday, October 27, 2013

The Latest....


Worried: I dare not put up the pictures taken in the hospital... call me gutless! 


A very quick note to say that things are moving along quickly.  The latest appears to be that the sigmoid volvulus is old news, now discarded as a problem.  No, the latest is that I appear to have Inflammatory Bowel Disease (IBD), not to be confused with the usual Irritable Bowl Syndrome (IBS) which is so often seen in those with CFIDS/ME/CFS and fibromyalgia.  IBD is a most unpleasant animal, to put it mildly.

I'm still in the hospital and things are jumping.  I have a tube that, on Friday, was inserted down my nose right to the stomach.  It's still there.  Tomorrow I was supposed to have a colonoscopy but it appears that I'm too weak for that at the moment.  A diagnosis needs to be made and so only a sigmoidoscopy will be done.  "We" will be looking to see if it's Crohn's Disease or Ulcerative Colitis.  Other info will be gathered, I'm sure, but to tell you the truth, I'm just taking all of this minute-by-minute.

In my better moments I know I'll deal with things because there is no choice.  In my sadder and more exhausted moments I am scared and very fed up with all the health issues.  I am out of my comfort zone in so many ways.

When the pity party is over, I try to be mature and tell myself that there are so many out there who are in much worse straits than I'm in and they are happy for each moment in their lives.  Let's just say that I am mature in years, but that's just about where my maturity ends.

My pain IS being managed. That's a plus at this point.

The diagnosis may also dictate where most of my healthcare will be done: here, locally, or at a large medical center.  I'm not even thinking about this aspect at the moment.

I AM, however, trying to figure out why I've lost all that info that usually sits on the right hand of this blog. Where is it???  I tell you, it's the formatting that gives me the most problems and the blog will the death of me yet.

So, as always, I hope everyone's doing their very best - only better!  Ciao and paka.



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12 comments:

  1. Dear Irene, Thanks for letting us know the latest. So sorry you are having to deal with yet another thing. Seems to be how it is for us, I guess. Please don't think you are having a pity party, you are going through some pretty scary stuff and even the most resilient of us have our limits, which always seem to be pushed to the extreme. I am glad your pain is being managed. Take care, Alpa xx

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    1. Thanks so much for your comments, Alpa. I can't tell you how much it helps when I get such wonderful support. I hope you are doing as well as can be. xx

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  2. what a nightmare! So much to deal with, you are so brave, NO talk of self pity, okay? I hope they, finally, make up their minds as to diagnosis and then treat it. You are in my prayers and sending healing your way, Take Care, Carole Bridgexxx

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    1. Thank you Carole, for your words and your prayers. Hopefully, we'll get some answers soon. Hope you're doing ok. xxx

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  3. Hang in there, Irene! I am praying for you and also for your doctors and nurses (that they will solve this and also treat you right). Take care, Martha

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    1. Thanks so much, Martha! You always say just the right thing! xx

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  4. I hope the test reveals some results. I think the colonoscopy goes farther into the system so if the inflammation is beyond the reach of the sigmoidoscopy a colonoscopy would still be needed. I'm so happy for you that you have proper pain management. Pain on top of fear is a REALLY bad thing. Wish the best for you as always!

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    1. Thanks, Melissa. I can't wait for the dreaded colonoscopy. I really want some answers! xx

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  5. I feel for you Irene. I have had every single diagnostic bowel procedure going and it's just disgusting and undignified. But on the plus side lets hope they get a proper diagnosis for you, to get you on the correct treatment and recovering as soon as possible. Thinking of you.
    Sianxx

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    1. Thanks so much, Sian. Yes, those tests are pretty undignified. On the other hand, I laugh that childbirth is also and I've done that three times! ;) Love hearing from you. Glad you had such a great time in Greece. xx

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  6. Just to let you know that I am thinking of you. Hope you are now being looked after properly and whatever needs to be done is now being done. Take care, Alpa xx

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    1. Thanks so much, Alpa. And don't think I didn't appreciate a second comment when I didn't even get a chance to reply to your first one. You'll a gem! xx (OK. How many negatives did I manage to put into that one sentence????)

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