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  The Chatter Box : Blathering On
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I really count my blessings! by Spursfan on 28 May 2009 8:31pm
Whenever this illness I have (Dermatomyositis) gets me down (which I try to be a few times as possible) I now think of a friend of mine with the same illness. I have never met her - in fact I 'met' and befriended her husband first when he joined the support group online and asked for help. She's a friend of mine now on FB but oh boy has she been through the mill (and still going through it).

She was diagnosed in (I think) February 2008 and believe it or not has been in hospital ever since. This time last year she was on a ventlator with no chance of coming off it in the near future, with little or no use of her arms or legs.

She is now off the ventilator and is getting stronger but will probably be wheelchair bound for the rest of her life.

She now goes on Facebook, and with the support of a fantastic husband and the staff at the hospital is SLOWLY getting some normality into her life. I think she is in her 30s or early 40s.

Sadly they are going to have to move home before she can leave the hospital, and the other week she and her husband found that the bungalow that is being built for them will not be ready until THE END OF 2010!! That means she will have been in hospital for 3 years!! (I think she will go into a sort of rehabilitation place soon).

The point is that her diagnosis was delayed because she also has arthritis, so when the Myositis was showing its ugly little head her doctors thought it was the arthritis.

I was lucky lucky lucky in that I was diagnosed within 6 months. But now if I start feeling sorry for myself because of a bit of pain or fatigue, I think of this lady.

Sorry for droning on.


Re: I really count my blessings! by mrsteabag on 28 May 2009 9:40pm
It's ok, Anne. And I'm sure that I'm not the only Palinite who counts you as a blessing, either. :)
Re: I really count my blessings! by artofcp on 28 May 2009 10:45pm
Hello Spursfan/Anne! I'm new here but I thank you for sharing your story. It takes courage. My best wishes to you.
Re: I really count my blessings! by sighthound on 29 May 2009 5:25am
Yes, Anne, you are definitely a blessing here.
Re: I really count my blessings! by geordiegirl on 30 May 2009 1:43am
You cope marvellously, Anne.
Agree with comments posted by others.

(P.S: thank goodness for Online - sharing stuff this way must be an emotional life-saver for some)
Re: I really count my blessings! by Spursfan on 30 May 2009 8:45am
Thank you all for your wonderful, warm and generous comments.

I wasn't really writing about me though, I was writing about this other girl, Alison, who has the worst symptoms I have ever heard of with this illness.

The illness isn't usually as severe as that, or at least it isn't with fairly swift medical intervention. Alison is an example of how we all COULD have been, I suppose (before steroids (which I'm not on now as my consultant knows how much I hate them!!) people died).

She is so brave and her husband is so supportive; he has even learnt to bake and takes in various cakes etc every day to share with Alison and the nurses!!

On the other hand I am fairly well, I have the muscle pain and extreme fatigue but I am not wheelchair-bound - yet (and hopefully never) - and enjoy life!! I am able to take Tosun for walks (though I only go for really long walks if I am with the husband in case I take a fall) and live fairly normally. I even spent a few hours in the garden weeding (which I love - NOT!!) yesterday and will do so again today. I have a cute pink gardening set (2 trowels, cultivator, secateurs and wire dispenser) but because there was some heavy weeding needed, the handle of the trowel gave me a blister in the palm of my hand!! I shall use a larger one today (even though it is not pink or purple!!).

Thank you all again. xxxxx

Re: I really count my blessings! by mrsthing on 31 May 2009 3:18am
There's always someone who puts things in perspective, isn't there? I've stopped whining about my back. It was rough at first, but now I see people all bent up with arthritis walking their dogs, swimming at the beach, grocery shopping--I have nothing to complain about.

Best of luck to you and your friend, Anne.
Re: I really count my blessings! by Lounge Trekker on 31 May 2009 3:52am
I cried because I had no shoes...until I met someone who had no feet.

-Unknown Buddhist author
Re: I really count my blessings! by ev on 31 May 2009 11:11am
Amen, LT..
Re: I really count my blessings! by mrsteabag on 1 June 2009 3:13am
My own whining confession: I had to have a crown put in. I was in the waiting room at the dentist's and quit whining when I read about Christina Applegate's breast cancer treatment. THAT shut me the bleep up.
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