I have been lacking in my bloggoshpere here lately. There are many reasons I guess. Lack of time being one of them and the other...just tired.
This past week was a little rough on me. I did not feel really that great. For whatever reason it seemed like everything hurt. My feet, hands, back and hips all hurt. Hurt like if I dropped something it was a major ordeal to bend over and pick it up.
The kids were edgy and got on each others nerves and the dogs were going in the house constantly because they would not go outside to do their business.
This (AND I DON"T BLAME HER A BIT)made Tracey edgy. Why? because 95% of needed to be done she had to do it.
I don't blame her at all for being tired or short with me and the kids. All she wants to do is get some rest. I know it appears that I am sitting on my duff doing nothing but in this case appearances do not tell the whole story.
I mentioned earlier that everything "hurts". The main issue I am dealing with now is the skin on my back, hips, and upper legs. It's the darn GvH. What is or has in a lot of places happened is the skin hardens and loses its ability to move. When you move sometimes it is so dry it cracks and starts to bleed.
It is really hard to describe but you would be amazed at how debilitating that is and how extremely painful that is to deal with.
To make it through the day I usually take some light pain killers given to me by the doctors.
I try to be careful and not cry wolf. Meaning I try to keep my mouth shut about needing help unless I really need it or I make sure I am not overselling the pain issue. I know Tracey get's tired of hearing about it...again who wouldn't.
But then the other day the doctors took a look at my back, hips, and legs and they wanted to know if I was still working? I asked them what do you mean? And my doctor said, How are you able to keep working 8-4 while dealing with this stuff? I told him well to be honest if it were not for my wife I would be in pretty bad shape. Each morning she puts lotion on my back to give it some elasticity. She then pretty much has to dress me and then on some mornings she has to open my pill bottles so I can take my meds because my hands don't do buttons at all and pill bottles are tough for a normal person.
So then I think....well maybe I am not overselling this pain issue. If they are surprised I am able to work.
The doctors want to do a new "experimental" treatment for my GVH but I am REALLY not excited about it. I would have to get another port put in my chest AND there is only a 40% chance of it working. And you don't even want to know the treatment schedule....it's over 3 FREAKING months. Not to mention lost revenue from work and the medical bill I am going to get. Just got one for over $1,000 for the last experimental treatment and it did not work..if anything it got worse. whatever happened to "maximum out of pocket?" I am ready for that to take effect.
Just venting there. The people at UTsouthwestern are awesome and with out them I would be below ground instead of above it.
It's just frustrating. I have what I would consider pretty good days all considering and then I will have one or two days where I am in PAIN. I tried to trace it down as to WHY but I don't have an answer yet. On the outside looking in I know that has to be frustrating to my family. Hey look daddy is moving and shaking everything is going good and then BAM!!!! Two days where it hurts to BLINK!!
So to my family I apologize when I am short with you. Please keep sticking with me. I love you Tracey. You are the best thing that has ever happened to me and I want you know that without you I am a nothing.
