Things have been getting a little better each day, each day
I feel a little stronger and not so blurry tired. I have a lot of limits, so
I know when I finish from hours at the clinic that I should take a nap before I go for a walk or try to go out for a bit. I was able to go out around the lake we have yesterday and take a nice walk with everyone, we fed the ducks and let the kids play in the volleyball court sand running around.
Today I had a doctor appointment and he is 99% sure that the rash I have on most of my body is Graft vs host disease. Today I had a skin punch test, yeah it is about as fun as the name sounds. They take a bit of skin off my back to test but I have a raised rash on my arms, upper legs, chest and back and it is itchy and angry. Cortisone cream did not calm it, so today they proscribed prednisone for it. I am not happy to have gotten it, but skin gvh is better than of the gut or liver, so the hope it a couple week course of prednisone will take care of it and calm the rash down. Problem is steroids and I don't do well, so I also now been prescribed a glucometer to measure my glucose before each meal as steroids make me diabetic. I am not happy about this complication or result, but it is a known fact of transplant, I was told it was less with cord blood, but alas my body did not avoid it. I also needed platelets and 2 units of red blood today, so I
been here all day. I feel a little better since blood started, mine was low so this might be the boost of energy I need. I did get my appointments changed from 7 days a week to three, so that is a bonus. I have ventured out to the park and Walmart, they warn you to be so careful, going at non peak times, etc. it makes you nervous to go out. We went to Walmart and
I wore gloves that way when I touched anything it was not touching me,
I dont have to wear a mask, just be careful with touching, I thought it would be weird, but it was not, it felt good to be out. Of course we were there to long and i was exhausted. It feels weird to be trying to get back to normal, going out, having freedom, etc. with worrying about getting sick, but you cant stay in a bubble forever. I just have to be really careful. It is limiting where we can go and hard on the kids, we cant go to a lot of kid places for a while, luckily they are easy to please and happy so far with where we been. I get tired right away, but hopefully that is going to get better each day as I get stronger.
So my first week home went well and I will continue to improve, hopefully rash free. The kids are so excited about the holidays I think they are going to bust, we been watching every possible holiday movie, decorating the tree, they are on the count down and it is great to see them so excited. We cannot do the usual holiday things we do, but so far they seem ok, Christian said our tree was the best one ever! We are going to make some cookies closer to the holiday, and of course continue our movie athons!
I feel a little stronger and not so blurry tired. I have a lot of limits, so
I know when I finish from hours at the clinic that I should take a nap before I go for a walk or try to go out for a bit. I was able to go out around the lake we have yesterday and take a nice walk with everyone, we fed the ducks and let the kids play in the volleyball court sand running around.
Today I had a doctor appointment and he is 99% sure that the rash I have on most of my body is Graft vs host disease. Today I had a skin punch test, yeah it is about as fun as the name sounds. They take a bit of skin off my back to test but I have a raised rash on my arms, upper legs, chest and back and it is itchy and angry. Cortisone cream did not calm it, so today they proscribed prednisone for it. I am not happy to have gotten it, but skin gvh is better than of the gut or liver, so the hope it a couple week course of prednisone will take care of it and calm the rash down. Problem is steroids and I don't do well, so I also now been prescribed a glucometer to measure my glucose before each meal as steroids make me diabetic. I am not happy about this complication or result, but it is a known fact of transplant, I was told it was less with cord blood, but alas my body did not avoid it. I also needed platelets and 2 units of red blood today, so I
been here all day. I feel a little better since blood started, mine was low so this might be the boost of energy I need. I did get my appointments changed from 7 days a week to three, so that is a bonus. I have ventured out to the park and Walmart, they warn you to be so careful, going at non peak times, etc. it makes you nervous to go out. We went to Walmart and
I wore gloves that way when I touched anything it was not touching me,
I dont have to wear a mask, just be careful with touching, I thought it would be weird, but it was not, it felt good to be out. Of course we were there to long and i was exhausted. It feels weird to be trying to get back to normal, going out, having freedom, etc. with worrying about getting sick, but you cant stay in a bubble forever. I just have to be really careful. It is limiting where we can go and hard on the kids, we cant go to a lot of kid places for a while, luckily they are easy to please and happy so far with where we been. I get tired right away, but hopefully that is going to get better each day as I get stronger.
So my first week home went well and I will continue to improve, hopefully rash free. The kids are so excited about the holidays I think they are going to bust, we been watching every possible holiday movie, decorating the tree, they are on the count down and it is great to see them so excited. We cannot do the usual holiday things we do, but so far they seem ok, Christian said our tree was the best one ever! We are going to make some cookies closer to the holiday, and of course continue our movie athons!