The Heart Can't Take It . . .

This morning I feel compelled to blog . . . I am in a rare amount of pain and have been all week. I'm hoping that getting it out - just putting it out there will help me because holding it in and pretending that I'm o.k. is not working right now. I have recovered well from my surgery. I have been diagnosed with malnutrition because my digestive tract isn't absorbing well yet (when I was in the hospital I became dehydrated and didn't eat for 3 days). I am doing well with that . . . I have just gone back to my grandmother's way of thinking 2 vegetables with lunch and dinner (dinner and supper). I have also been eating applesauce cups throughout the day and I eat a banana every day. Just grabbing fruit whenever and wherever I can. I do not like chicken and am pretty sure if I eat another piece of naked chicken I might loose my mind but the benefit of malnutrition is you get to eat red meat and I am a fan of steak. None the less, I feel physically strong. Slowly pain has creeped back in my life in a strange way. I was doing pretty well I thought. Its funny though as I re-read past blogs I notice that pain comes more often than I remember or acknowledge even withng myself day to day. In November when I started seeing my rheumatologist the pain was horrible. As the meds kicked in it was amazing, I could walk through the grocery store and didn't need the scooter. I was walking short distances and standing for short periods of time with no pain. As the chemo started working on my digestive tract I realize that I was feeling just sort of sick and tired a lot. So, its been a roller coaster of different pain/illness. I went from being in massive pain all over my body to feeling just sort of tired. Well, now the pain is back and I don't remember if this is how I felt in November I just know this is not how I want to feel. After surgery, there is no more chemo and the daily cocktail of pills I take has changed. I am thinking that it takes a while for the meds to build up in my system but that process is so difficult. And as the pain remains and limits what I do it is playing on my psyche, attitude and demeanor. About a week ago the pain started in my back. If I get up and start walking beginning in my lower back the muscles start to contort and it feels like they are drawing up and sort of making a knot around my kidney area. While this is happening the muscles in my upper back start to spasm. And it went from me being able to walk about 25 yards to not being able to walk 1 yard without pain. I had to stop 3 times yesterday walking from Soldier's Grove to the State Museum. And although the pain was excruciating it felt humiliating and really hurt my feelings. Why can't I move. And the fact that I am now in physical therapy, which I truly enjoy, makes it a little more puzzling. I am having pain in my left shoulder so I can't raise my arm and my head is heavy. I literally can't hold my own head sometimes because my neck just doesn't seem to work. I think part of all the turmoil is that a lot of people think that I stop walking or use the cart because I'm overweight and yes, people do say things, point and just plain can't whisper. And although my weight is an issue, 3 of the 7 medicines I take cause and/or retain weight. So no matter what I eat or what I do I won't be loosing weight unless my disease takes a very drastic and devastating turn. Funny, I didn't start really gaining weight until I went back to college, which happened to be in my 30's when my metabolism slowed down and my body started to shift. Oh, if I understood then what I understand now . . . but that is water under the bridge. In the last 2 years since coming home from Cooperstown I've tried so many different ways to eat better and healthier. I didn't want to do a diet, I wanted to acquire life changing eating habits. Because it is so important that whatever I do I can sustain but all I did was gain weight. I now know that I was sick and my body wasn't functioning correctly. But you know what knowing that doesn't keep me from being upset that I haven't been able to loose weight no matter how much I tried. I don't make excuses for being overweight because I haven't been average weight since my 20's and I do love food. But this whole blow up like a blimp with Barry Bond's head (from the steroids)is really taking a toll. And then for people to say cruel things, it just gets to be too much. And I have found myself not taking the scooter when I should because I don't want people to say mean things to me. I am very sensitive, my grandmother used to say "You're tender-hearted." When people say things to me, nice or not-so-nice, I take it to heart. So, there I am in so much pain I can't stand up straight and feeling too humiliated to stop and sit or use a scooter. I think it just messes with my head too much. I feel like there is definitely a mental aspect to my illness. I mean honestly having a disease that has less Google listings than you have is crazy. Seriously, I have more listed under Google than my disease shows. That sort of scares me . . . but that is how little is known and has been researched. I would be the one with the rare disease. Knowing you have something other people have never heard of or don't understand is difficult. And when so little research has been done tht you are constantly looking for answers too, means just a lot of frustration. I want to always have a good attitude and feel like I can get through all of this but its is difficult. I get excited that my organs are functioning well . . . I expect a great report when I go back to the doctor in a week but I need to know what is going on with my muscles. I've never felt pain like the pain in my back. I guess I'm looking for consideration, consolation, comfort and confirmation. I've gotta get better and soon because although my body seems to be able to take it, my heart just can't.

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.