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Old Thu Oct 21, 2010, 05:04 PM
Julianna Julianna is offline
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Join Date: Feb 2010
Location: Victoria, Australia
Posts: 184
Struggling with my long MDS process

Hi everyone. I havent been here for a while. Trying to put my MDS on the shelf so I can deal with other life issues. But it always comes back to haunt me. Last platelet count 26. The rest a bit under par but ok.

I've just taken part in the MDS Webinar from the AA&MDS organisation. It was really good to put some of my concerns and issues out there. It was really helpful. But I come away still feeling a bit overwhelmed by my disease. My platelets are still low and I'm trying to begin my new career in Animal Care. I keep hurting myself, to the point where I only feel comfortable to wear long pants because of my bruises etc.

And my hands are bruised a bit too. And it makes me FEEL ill just looking at them! Hope I am not coming across too negative but I am young-ish and trying to get on with my life. But I'm tired. And just want my treatment to get over and done with so I can make some kind of future plan.

The family around me still have the "she'll be right!" attitude which makes me feel like a hypochondriac. But I know that I'm not. I have this disease and they dont understand it. Because I can still get out of bed, and do the normal things that people do, like work. Even though, I am too tired often to get to do the fun things I'd like. Does that make sense?

I am sure I am not the only one with these issues. And I'm sorry I havent been around to support others here.

My life is a bit overwhelming in lots of ways... and if life is what you make it, its obviously ALL my own fault!

Thanks for letting me vent. I felt like I had to talk to someone. And I picked you.

Julie
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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