Sometimes reflecting is a bad thing. I was looking back today and couldn’t help but wonder when i changed so much. Why I changed so much. It has to be me as I am the only common denominator. Is it possible to change back?

I am not sure when I became the last person you spoke to about how you feel. I am not sure when I became the last one that was invited along. I am not sure when I became the last thing you thought of when you had to make decisions. I am not sure when I stopped counting when you had the chance to do something that had the potential of hurting me. When did I start to count for so little? When did I become invisible?

Like I said all of these changes has to be from my side. I just wish I knew why. Why did I change into this when I was so happy being that. Was it maybe because you crossed the line one too many times and I stood up for myself? Was it because i was cast aside and became invisible one too many times? Was it because I realised I was only there when it suited you?

I have become empty, angry. I feel worthless. I feel unlovable. I feel like a robot. I wish I knew why. I want to be the fun, happy, laughing person I once was. I want to be the person people wanted to be around. I want to be the person that had conversations for hours because my opinion mattered. I want to be the person that mattered.

I am not sure why I changed into this. Are you worth it? Do I let them get me down? Somehow it doesn’t feel right.

Watch me now……as I take my life back……one way or another…..

Watch me as I start to matter……..

Watch me as my opinions start to count………

Watch me as I become visible……….

For so many years I have had a very embarrasing, very painful and very secret problem. It started when I was about 14 or 15. I had these painful lumps and it seemed that my glands were always swollen. I went to the doctor and he suggested the I have them surgically removed. He wasn’t sure what it was but was confident that once it was removed it would be the end of that. Barely a month after the surgery I had another one in another spot.

He did some tests but had no answer. I was put on antibiotics. They just kept on coming back. We eventually moved and once again it as suggested that I have surgery to have the lump removed. Each time I went to the doctor I was poked and prodded and had tests done. Each time it became more painful. I had the surgery but also had blood tests done. The blood tests got lost and I had to do it all over again. The results didn’t show anything that helped and I was just put on antibiotics again.

After many years of tests and surgeries I was told that it came from my nose (not sure how that works) and that I was wheat and lactose intolerant. I was told that I had a problem with my white blood cells. Each time I was put on antibiotics and before I had even finished the course it would be back. After a while I stopped going to the doctor and just dealt with the pain and embarrasment. These lumps started to leave awful scars and in the last few years there has hardly been a day that I have not had a lump of some kind and been in pain.

I was lucky enough that Willie didn’t see the scars and understood when I was in pain. On Monday he suggested I go to our new doctor about this and see if he could shed some light.

I walked in with a lump in full force and by just showing the doctor he knew immediately what it was. I was shocked that he knew exactly what it as and how it felt and what happened. He has decided to put me on quite hectic medication for about 9 months and see how it goes. He told me I had Hidradenitis Suppurativa. I read up about it and ended up feeling quite emotional. After years of not knowing I finally have a name. It as such a great relief knowing what it was and knowing I was not alone. It was such a huge shock to read about it. Even thought I had long ago resigned myself to the fact that I was just going to have to deal with this it was still a shock to know that it might not be curable. It as scary. I am not sure why it is as scary knowing as it was not knowing.

I am also a little angry that there is so little research done about this. There is no known cause for this. There is no known treatment for it. There is very little known about this. I am going to give this treatment the best shot. I know it is going to be a rough few months. It might not be but one way or another I am going to give it my best shot. It is awesome to know that all the pain and embarrasment was not just in my head. That I am not the only one.