Reader’s Questions:hardest adjustment with aplastic anemia
Q: I was diagnosed with aplastic anemia two years ago, and have struggled with some of the adjustments. What has been the hardest adjustment for you to cope with? What do you do to deal with it?
There isn’t a particular aspect of aplastic anemia(AA) that jumps out at me as the absolute worst. Many of those with AA have told me they hate the medication and side effects, or the drain of the transfusion process, or the constant fatigue. I too experience no great joy with those things, but struggle to single one as clearly harder than than the other. Maybe it’s because I’m only two months along in all this there hasn’t been ample time for the one of the everyday annoyances to creep in and irk me with consistency. Perhaps in six more months I will write something entirely different. For now, I find the ‘bad days‘ to be the hardest adjustment. Prior to all this, I didn’t have many moments where life just piled up and overwhelmed me to the point everything and everyone around me was an annoyance. Since diagnosis these moments happen almost weekly. The bad days usually hit me out of nowhere and start with just being frustrated about being sick, the angst is multiplied by those specific things mentioned above—the meds, the diet, the fatigue, the transfusions. All this leads to me lying in my bed. Bed makes it worse. In bed I think about everything, not in the least the time wasted lying there in self pity; You would think life altering illness would guarantee greater perspective, the ability to appreciate every moment all the time. It’s not that simple and if it is it doesn’t happen all that fast.
I’m starting to realize the best way to deal with the bad days is accept them when then roll in and not get caught up in what a terrible waste they are after-the-fact. Rather, I try to remind myself to move on—what has already happened, has happened and that’s the end of it. All I can do is learn from it and attempt to improve the next time. Sounds cliche, but often the truest things are.
The Questions column will appear weekly on myPICCLine.com. You are invited to submit questions here.





September 9th, 2009 at 8:55 am
Talking with other patients can really help. Try connecting with others on marrowforums.org. This is a free online community specifically for those affected by aplastic anemia and other bone marrow failure diseases. Also, contact the Aplastic Anemia and MDS International Foundation- they can connect you with patients through the peer support network as well as answer any of your questions about aplastic anemia – 800-747-2820 press option 1 or email clark@aamds.org.
September 11th, 2009 at 8:20 pm
Hey Matt, I just read your newest post for Sept 7th. I try to understand how you feel and I cant imagine. My son Gage takes each day by the horns. I constantly ask him how he feels and he always come back with “I’m fine”. I guess its because he’s had Aplastic Anemia so long he really doesn’t know how it is to be really normal. As far as Gage is concerned he is normal. And that is what makes him perfect.
Stay strong!