Wander Girl

Many of you know I started this blog to tell my story, make connections, and help anyone going through some of the same things as I’ve been through feel less alone.  I hesitated greatly to share this as I’ve been criticized lately for sharing things too openly, but today I was contacted by a friend from college who knew a bit of my story and wanted more insight.  One of her loved ones is undergoing a diagnosis period and she wanted to connect with someone who has been there and understands the frustrations of doctors who claim to know what’s going on but, dance around a diagnosis.  So, as a result, I thought I’d remember back to my original diagnosis days and give a more thorough explanation of some of the things I experienced to help anyone feeling or going through the same.

My diagnosis started when I had a rash break out over my face and hands. I went to the student health center at the University I was attending and their initial diagnosis was that I just had herpes sores. I told them there was no way. I wasn’t dating anyone at the time and hadn’t been kissing anyone. Unless it was from some other source there was no way it was Herpes. The health center sent me to a dermatologist, who was also baffled but eventually determined that I had Lupus after doing a skin biopsy. However, it was an incorrect diagnosis of Discoid Lupus, (Lupus that just affects the skin).  I was put on steroids immediately and sent to see a specialist up a the medical school in Salt Lake City. The steroids they gave me caused me to not only break out in open sores on my hands, but also in my mouth. I couldn’t complete school assignments and it hurt to eat almost everything. Steroids cause intense hunger and weight gain and I was always swollen and in pain.

The next few months were much of the same, I tried to process the diagnosis, while also coming to terms with my mortality. I truly didn’t know if I’d heal and what the rest of my life would be like. I didn’t have all of the symptoms that typically come with Lupus. I wasn’t affected by intense joint pain, but I did experience the butterfly rash. I experienced hair loss, and exhaustion and was highly reactive to the sun for the first few years. When I was in the sun for too long the open sores would start to re-appear on my face and hands. This may have been a continued result of the steroids. Eventually I said, absolutely no more, I was done feeling like I couldn’t do anything due to the open sores as a result from the steroids. This was a personal decision and I don’t think they affect everyone in the same way

The funny thing about Lupus is that the symptoms can be different for everyone. A friend with the same disease started her journey with swelling around her heart. There is just a number of different ways Lupus can affect someone. Not knowing what is going on in your own body is one of the most uncomfortable things though, and getting a diagnosis can ease your mind and bring you peace in at least knowing what is going on.

Anytime I make connections or am re-introduced to someone that can benefit from something I’ve learned through my years with this disease makes the hard times and negative feedback worth it to me. Helping other people has always been my main motivation in sharing these things and I will continue as long as I feel that something I say is helping someone or of value to someone.

I think one of the  most helpful things I’ve learned from this disease is that I choose who wins each day. Getting up and going to work is me winning. Choosing to exercise three times a week is me winning. Going back to bed until I feel better is also me winning.

P.s.

Today, I got sent to the emergency room because my new doctor had my blood work done, and it came back that my anticoagulation was really working too well. (Meaning, my blood was way too thin despite me missing a dose this weekend).  The wars I wage now are the unknown. Finding out what caused my blackouts and discovering why my body is suddenly processing these medications differently is the number one priority. Determining the cause and additional disgnosis could be devastating, but for now, I keep battling the monsters I CAN see.