This morning I had a doctors appointment at Vgh. My doctor decided to put me back on prednisone because it’s believed I have GV HD in my liver, my mouth and throat, possibly my joints and possibly my stomach. She’s not totally convinced about the joints, so she is sending me to a rheumatologist.
In addition to the prednisone, I will be getting IV I G every four weeks for the next six months. My immunity is showing to be extremely low. I better be more careful. My bones need help too. I will be getting an infusion to help strengthen my bones.
I had a lung function test on Saturday but I forgot to ask my doc how that went.
In other news, Brandon and I celebrated our birthday last Friday. It was quiet but it was a wonderful day. I’m grateful that I am here to celebrate.
My birthday gift 😀
Wow what a hot day out there today. Beautiful but my pitiful fatigued body has a hard time with it. The sunshine makes me happy but I kinda feel grumpy lately. What’s the root of these feelings? I often ask myself this and can sometimes figure it out.
Today : heat, menopause ( maybe), dehydration, spending all day with the kids but feeling like I failed as a mom because I can’t do more with them, missing my Madison who I’m sure is not missing me ( she’s at camp), feeling frustrated about the mess I live in because I am unable to steam up enough energy to work and organize. ( I think once the kids are back in school the mess will lessen).
Even through all these depressing feelings I know I am where I am supposed to be in life. I remind myself I am not a bad mom. I take my kids places where I can sit ( including cultus water slides next week) and be comfortable. I took them glamping for 2 days without Aaron, played chess a couple times ( boys just taught me). I know doing things with my kids doesn’t make me a good or bad mom but it feels that way sometimes. It makes me smile thinking about Madison and her cabin pack driving the counsellors crazy with all their giggles.
As I was saying. We all have times of ups and downs and yes being very fatigued sucks, but I sure appreciate those moments when I do get a bit of energy or have a good day physically. Today I read a passage in my bible that someone from bible study highlighted for me. I thought wow how appropriate after today’s feelings. Here it is ,
I am going to be ok. It says so right there 👆🏻. I thought of so many who are going through tough times and hope this encourages them too. I feel like this is God saying that my scars and sickness don’t define me. Good and bad He is right by my side and yours. 🌞
First off I am really excited that today I had my first set of immunizations. I had 3 needles that were full of great stuff to strengthen my immune system. I do have to go frequently. Next round is in September where I will get 4. Basically all the shots you put your kids through, I have to get. I have been extremely tired from it and have sore arms but other than that I think I’m tolerating it okay.
This past weekend Aaron was able to go up to Smithers to celebrate his aunt and uncles 60th anniversary. While he was there I went to stay with my sister in law. She injured her knee quite badly, I felt very bad for her. ( pray for her, please) I noticed throughout the weekend and even a couple days before that I wasn’t feeling very good. My appetite was minimal and fatigue picked up. I’m sure the weather didn’t help. Unfortunately my liver enzymes are quite high. They are the highest they have ever been. It scares me a bit. So my doctor called this morning and made me go back up on my cyclosporine ( immune suppressant). I think she may think I’m getting GVHD in my liver. This is very possible. I was really happy to go off of it but it is what it is.
I still feel like I’m slowly getting better and I can’t complain. It’s God’s timing not mine. Sometimes it’s hard on me because I look so normal now but I’m still dealing with a lot of little things.
I sure am loving having hair again. 😀
Look at that mop 😂🤪