As I get older, I get worse and worse at figuring out technology. I am only 30 but I am not fond of all of these app updates. I use the weebly app and I can barely figure out how to use it. If I post the link anymore, it shows up with this random picture of me from one of my posts. And it is not a flattering picture- it’s a reallll close up. If anyone knows how I can change this - please let me know!
I know I have mentioned my muscle spasms and fatigue before but I don’t think I have talked about how it is affecting my subcutaneous fat. My stomach had been hard and lumpy and I kept asking my regular doctors what it was. They had no clue. My stem cell transplant doctor knew right away and let me know that it was definitely GVHD.
I know I have mentioned my muscle spasms and fatigue before but I don’t think I have talked about how it is affecting my subcutaneous fat. My stomach had been hard and lumpy and I kept asking my regular doctors what it was. They had no clue. My stem cell transplant doctor knew right away and let me know that it was definitely GVHD.
Yes, I did have two children but my stomach did not start looking like this until my youngest was about five years old. If you gently rub your hand across my belly, it feels lumpy. If you push, you can feel how hard the whole thing is. This picture was taken today, after 2 months of using imbruvica. I can say that it is starting to break up a little bit so that is good. I told my doctor that I had thought that I lost weight and he said it was definitely a possibility due to all the edema in that area.
Gvhd has also caused me to have skin discoloration. My primary care doctor thought it was yeast. My skin biopsy was sent over to YALE and they said it was eczema. Two creams later and no change. I have not really seen much change to it after being on the imbruvica but my doctor warned me it could take months and months for the discoloration to start going away. People are going to be seeing a lot more of this now that it’s summer time!
Gvhd has also caused me to have skin discoloration. My primary care doctor thought it was yeast. My skin biopsy was sent over to YALE and they said it was eczema. Two creams later and no change. I have not really seen much change to it after being on the imbruvica but my doctor warned me it could take months and months for the discoloration to start going away. People are going to be seeing a lot more of this now that it’s summer time!
Actually now that I think about it, I think the imbruvica has started to work a little bit because it doesn’t seem to be as prominent in my arm pits anymore. It does remain under my chest area though.
I also wanted to vent today. I am on leave from work due to the disabling muscle cramps I get. I get them everyday. It’s like a Charlie horse but can happen in any part of my body. It happens mostly in my back and hands but does happen other places frequently as well. I would have to say the worst place to get one is my neck. Anything can trigger them- from stretching to sitting, rolling over while I’m sleeping or twisting the wrong way when getting into my car. When I told someone today that I couldn’t go back to work yet because of these muscle problems their response was, “I have muscle spasms everyday too and I still work”. This is not the first time this has happened to me - a friend of mine had said “my back hurts too and I still work”. I feel like it’s minimalizing what I actually go through everyday. I don’t think back pain is the same thing as what I have. I don’t think someone’s muscle spasms in their hip are the same thing as muscle cramps everywhere in your body. Not to mention all of the chemo I have been through and the mental anguish (ptsd) of being diagnosed with an “incurable” cancer right after my 22nd birthday. Most people would be dead if they had to go through what I went through and I don’t think it’s fair for people to assume I am just fine all of a sudden. It is a struggle everyday! I was contemplating posting a passive aggressive Facebook post and including the pictures I put on this blog - kind of as proof that my new immune system is attacking me. But I decided to post here instead to people who actually have a clue what it’s like to go through this. Maybe the pictures will even help someone with diagnosis one day. I do have hope that the imbruvica will work and I will feel better eventually. But that day is not today and I wish people would leave their comments to themselves and let people heal in peace. I am not trying to have a pain competition with people- what I have gone through and what I deal with on a daily basis is hard. It does not deserve to be minimalized. Rant over.
I also wanted to vent today. I am on leave from work due to the disabling muscle cramps I get. I get them everyday. It’s like a Charlie horse but can happen in any part of my body. It happens mostly in my back and hands but does happen other places frequently as well. I would have to say the worst place to get one is my neck. Anything can trigger them- from stretching to sitting, rolling over while I’m sleeping or twisting the wrong way when getting into my car. When I told someone today that I couldn’t go back to work yet because of these muscle problems their response was, “I have muscle spasms everyday too and I still work”. This is not the first time this has happened to me - a friend of mine had said “my back hurts too and I still work”. I feel like it’s minimalizing what I actually go through everyday. I don’t think back pain is the same thing as what I have. I don’t think someone’s muscle spasms in their hip are the same thing as muscle cramps everywhere in your body. Not to mention all of the chemo I have been through and the mental anguish (ptsd) of being diagnosed with an “incurable” cancer right after my 22nd birthday. Most people would be dead if they had to go through what I went through and I don’t think it’s fair for people to assume I am just fine all of a sudden. It is a struggle everyday! I was contemplating posting a passive aggressive Facebook post and including the pictures I put on this blog - kind of as proof that my new immune system is attacking me. But I decided to post here instead to people who actually have a clue what it’s like to go through this. Maybe the pictures will even help someone with diagnosis one day. I do have hope that the imbruvica will work and I will feel better eventually. But that day is not today and I wish people would leave their comments to themselves and let people heal in peace. I am not trying to have a pain competition with people- what I have gone through and what I deal with on a daily basis is hard. It does not deserve to be minimalized. Rant over.