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Old Mon Sep 15, 2008, 07:06 PM
koahope koahope is offline
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Join Date: Sep 2008
Location: Middlebury, IN
Posts: 2
Spouse new to this forum

Hello everyone,
I'm Hope and I'm new here and wanted to talk with someone that is a Care Giver/Spouse to someone who is dealing with MDS. My husband was diagnosed last October (08-see signature) and lately I have been overwhelmed with everything and very concerned about his recovery.
I'm running our business (a seasonal campground) while trying to deal with his illness, my house seems to be falling apart, don't have time to go shopping or do much cleaning because I'm at work all the time (can't wait till Nov when the camp closes for the winter). Thankfully our son is here helping at the camp which realy took a load off my shoulders in April when Peter had his transplant! I certainly couldn't have done it all alone!
My question to other cargivers is, how do you do it all?! Work (for me is 12-16 hr days), housekeeping, shopping, and taking care of spouse?? My mom helped schedule guys form church to take Peter to his local weekly appointments which was HUGE for me, and I take him to Indy (3 1/2hrs away) every 3 weeks for his appointment at the BMT clinic.
Now he's dealing with a rash, low grade fevers, and grouchy moods (no cure for the moods I guess). I worry everyday about GvH, am tired of watching his HGB go down, tired of the transfusions, and feel hopeless and helpless because I just don't know what to do to help him. I am having moments where I just wish this whole thing would just 'go away' and things would go back to some sense of 'normal'!!! I'm so tired of hearing him say 'I'm sorry' everytime I yawn or say it's been a hard day on the campground, as if appologizing for something he can't control is actually going to help!
OK, I've vented some, if I write much more of a book no-one will want to read it let alone answer it.
signed 'tired in Indiana'
Hope
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Hope, wife of Peter - 35yr old that was diagnosed with MDS RAEB Oct 2007, underwent 2 rounds of Chemo in Jan 08, and 3rd round of Chemo with TBI in March 08 followed by Bone Marrow Transplant April 08.
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