May 18, 2013 - 4:01 pm
I was diagnosed with ALL (PH+, CNS) almost two years ago now, and that was after 24 years dealing with a chronic autoimmune disorder. Treatment was a real whirlwind: heavyinduction chemo that nearly killed me, a relatively bearable maintenance round and a rough BMT prep of chemo and TBI+cranial irradiation ... all within 6 months.
In every medical and measurable way, I am now better; the cancer and previous autoimmune disorder are gone. But I certainly don't feel it.
Since sometime shortly after transplant, I've been having chronic headaches. It was better when I could treat them, but my neurologist advised abstaining from pain medication, not that anything as weak as Tylenol actually works anyway.
My fatigue has been getting the best of me for a while now, I'm barely able to work half-days before I hit a total wall. I get so tired that my eyes start wattering and, yet, it's often difficult to fall asleep. I'm still waiting to get a call or a letter informing me of an appointment for a sleep study.
I feel like a complete dunce anytime I'm in a conversation because words just don't come to me like they used to.
I pretty much have no life anymore. I have a supportive family, but it's very difficult for me to put myself into any social situation as spending my childhood in the hospital and constantly on immunosuppressants (I'm sure many of us are familiar with Prednisone and the phsychological train-wreck it can turn someone into) have made it very difficult for me to connect to people.
Does it ever end?