Sick and Tired of Being Sick and Tired . . .

So much has happened since last I typed. On a positive note, my nephew turned 1 year old. He is so incredibly beautiful . . . that little face and he is so vibrant. I am grateful I was able to spend time with him - he did a lot for me with his little magical kisses. I often find myself searching out these small things in life that make me happy. Looking for the things that are not material or tangible . . . I look for God's mercies in everyday life. And they are not that difficult to find but they can be difficult to focus on in the wake of a violent body that is filled with pain and turmoil. I wake up everyday and think how fortunate I am because, well to be honest, I am alive. After that little bit of happy it can become difficult because sometimes I wake up almost paralyzed. The pain of moving is sometimes more than I can comprehend. I wake up scared to move. I wake up afraid that I won't be able to move. Waking up is exciting and tragic all at once. Oh, I should catch you up. I didn't read my last entry so I don't remember when I did it or where I left you but I will try to pick up. The chemo was devastating my digestive tract so I ended up having emergency surgery. The doctor stopped chemo at the end of January and we were developing a "plan" but then I had an episode at work . . . and 2 hours later I was getting up off the floor and realizing that things are bad. I went to the doctor and he decided that surgery needed to be done immediately, within a day I was in surgery. And the surgery was extremely successful. It alleviated a lot of pain and distress from my body. Harrisburg Hospital's ER was horrible. I had to be taken back to Harrisburg Hospital twice in 2 days . . . I entered the hosptial for surgery on Friday and was home for less than 10 hours in the next 3 days. I had 5 IV-sites and was given a crazy drug called dilaudid. I probably should have never been allowed to go home. And the things I suffered were beyond humilating. I am on the other side of the incident but I am no less traumatized by the gross incompetence and failure to treat me wholly. Two weeks later, I am grateful to my surgeon. Because the chemo has ended and my rheumatologist gave me a whole new cocktail of drugs my body is racked with pain. And I do mean pain. I think of my body as a violent place where muscles contort or contrict or spasm or don't work. The pain has become extreme and its hard to wait for the new cocktail to build up in my system. I have stopped telling everyone I'm o.k. when I'm not and it feels horrible. I just want to say I'm fine and go on with things. I don't want to not be o.k. and I don't want other people to know I'm not o.k. I realized the other day that my already fat face is now enormous because I have what I call "medicine face." When people who are sick and take medicines that make them gain weight or are on steriods so they puff up even more . . . yeah I have that . . . I am afraid I'm going to have a head like Barry Bonds. Remember when he first started in baseball and his head was a normal size but his actual head got bigger - my head and face are getting bigger. I can really see it and it is disturbing. Everyone says that I look fine but I have this second face growing where my chin used to be and around my eyes - huge and swollen and its creeping me out. I often feel bad because I know that it could be worse and that there are people who can't walk or who are paralyzed. I don't want to be ungrateful for my many blessings. I also don't want to be whiny. But the reality is, it is difficult to ignore the pain and its difficult to put on the happy face every day. Some days I'm not even sure how much longer I can live like this . . . how much longer can I do this . . . the answer is as long as I need to . . . I hope. So, where do I go from here . . . I am being re-assessed now and the rheumatologist is determining whether this cocktail is working. Assuming it is I will continue on it until my body goes into remission . . . assuming it will eventually. I have started physical therapy 3 times a week for the next 6 weeks, then it's into the pool. My left kidney has been giving me fits and is extremely painful right now . . . my liver and right kidney seem to be doing well. My chest was hurting because of pericarditis but its slowly getting better. My ankles are huge and my leg muscles are tender. And please do not try to touch me . . . my skin hurts so bad . . . it hard. I mean it is difficult these days. I realize that it could be worse and for some people it is . . . so I count my blessing and look for God's mercies because to be perfectly honest, I'm sick and tired of being sick and tired.