For those of you who are new to my blog, I want to say welcome. I started this blog as a way to release some of the pent-up anger I was feeling over my health conditions. I knew others out there were probably feeling the same way I was, but at the time, I had not met anyone at all with the same combinations of diseases I had. As a matter of fact, if you go way back into my blog archives when I talk about the early years of my diagnosis, I did not meet anyone for over ten years or more who even had one of my conditions. It was a very difficult time in the beginning because I had no idea what was going to happen.
So I tied this blog concept into my love of Tolkien, the fact that as a hard-headed youngster I actually burned my hand reaching for the stove (I thought there was soup there…wanted to help), and then right before my wedding, my skin started to blister and my hands felt like they were on fire all the time (PCT). There have been many times when I felt some sort of resentment towards others as they lead their “normal” lives. I kept it inside and “stuffed” it down. I did not explode on others, but I was not nice to people I cared about. The thought was, they will forgive me. Okay, so maybe I didn’t consciously think that way, but looking back, I know it was easier to push them away when I was hurt. Much like a wounded animal.
Now, 17 years after meeting my future husband, I can say he is finally learning this and I am learning erm or trying not to react to my pain. Some of what has helped me is as follows:
- I met a doctor who actually said, “If you don’t like the job I’m doing, you can fire me.” Technically he is my chiropractor, but no one has ever told me that. So it counts.
- I surround myself with positive quotes, positive people, and positive things. If I can’t, I will leave a situation. It took me a while to realize I didn’t have to stay to make a point. I could leave and that would be a good point too.
- I avoid situations I don’t want to be in. I am learning to say no more often.
- I found a person who has some of the same theories I do about Hereditary Hemochromatosis. I have been saying for over 15 years that if this is genetic, we don’t know enough about what that could mean. You are messing with genes here. Here is his link as he has been researching a bit longer than I have. Leslie Johnston, D.V.M. He has put together a list of things he thinks is linked. Yes, it seems like a long list, but number 117 sure is true. My family would agree.
- My porphyria friends. Where would I be without my tiny band of porphyria friends. Such a nasty disease and you all cope as best you can. I know that I have the cutaneous kind, but we are still a band of fighters. Each of us fighting our different kinds.
- My Hashimoto’s diagnosis (thyroid) is still one of the things I don’t understand, but eating on a restricted, mostly clean, mostly gluten-free diet improves some things, and for that, I thank my husband for being supportive. We walked away from the most delicious looking bread just because he knew it would cause me stomach issues.
- A whole new world of friends on The Burned Hand’s Facebook quote sharing page.
So, I have not forgotten all of you, my dear friends, who are fighting disease. I might not post as many updates as I once did, but I promise you, if I come across some research that will help, I will let you know! This post is just to let you know I am thinking of you.
