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.