depression - 80/20

Life is so strange sometimes. There are so many ups and downs, and it changes at the drop of a dime. I have been feeling so out of place lately. It's seems like all I do is cry, sleep or worry. I know I have a lot on my plate, but these feelings are not typical. I am so worried about Will. I have this "dark cloud" gloaming overhead and it is getting the best of me. I have this sense that things are not as good as they seem and it really scares me.

When I lost my job in March I also lost the fantastic health insurance that covered me and my kids. I kept COBRA on Will because the insurance I have at my new job absolutely sucks. It has a $50k cap and to a FA patient that is mere pocket change. I can keep Will on COBRA until next August, but the expense is draining not to mention the stress. Never the less, he is covered and that is the main focus.

Okay, but to the sucky insurance....not only does it have a cap it also has a reimbursement of $600 for prescription meds. SIX HUNDRED DOLLARS! My anti-depressant alone is $360 a month, so I made the decision to take myself off of it. I haven't taken in almost two months. I am thinking that is the reason for this depression and for all of this weight gain that is getting out of control.

My whole life feels out of control. I am trying some nature remedies like B6, B12 and St. Johns Wort. I hope it helps. It has to work because I can't take this much longer. Don't get me wrong, I am not a Complete basket case (yet). I can still put on a happy face and pretend that everything is okay (for a short period of time), but then sometimes after I wipe of that "I'm Okay & Life is Great" smile and let it out....it doesn't just come out it's like opening a flood gate!

Funny thing is Will is doing okay. There isn't any bad news to cry about and since he was diagnosed for FA almost 6 years ago, I think it's had time to sink in so that's not the issue either. It's just overwhelming sometimes.

Dr. M asked me what it was that was holding me back from wanting to go to transplant. He said that is his opinion an unrelated mismatched donor FA transplant probably isn't going to get much better than 80%. He also said that he couldn't believe they were as successful as they are. Well if Will had cancer or leukemia or some other disease 80% might be okay, but Will has Fanconi Anemia. By telling me that there is an 80% success rate then my mind immediately goes to that 20%. That TWENTY PERCENT of kids who have names like Robbie, Alex, Coley, Davaan, Kendall, Taylor, Brandon, Henry, Emily, Charlotte, Cole, Cade, Maria, Abbey, Danielle, Taliah, Tom, Jack, Adam.....the list goes on and on. When you can put names and faces to that Twenty Percent, all of the sudden 80% doesn't sound so hot any more. There aren't enough of us to get excited about only a 20% loss because to be honest losing 20% of our FA kids is HUGE!

80/20 is just not good enough!