Three weeks ago I started feeling very tired. It felt very familiar. Its how I feel every time the seasons start to change. Body aches, fatigue and just plain wore out. Then two weeks ago on Wednesday night I had a rash appear on my face. I thought I was having an allergic reaction to something. It got very red as the day went on and looked like it was even whelped up by the end of the day. I chugged children’s Benadryl and went to sleep. It was somewhat better the next day but still had a lot of heat in it. I just tried not thinking about it and kept myself busy by working on the house. Deep down I have known what it is all along but just wanted to keep good thoughts about my recent diagnosis which was psoriatic arthritis. I really didn’t want to show anyone these pictures but I figured why not. If it helps someone else who is not sure why they are getting a rash they now have an option of knowing what it is, Lupus.
Pretty, isn’t it? NOT! I called my rheumatologist Thursday to let her know what was going on. I have to keep her up to date with everything and anything that effects my health. She called me in a steroid regimen and told me to just keep taking Benadryl. I didn’t do either. I know I should have but my face started feeling better Friday. Steroids make me mad. Not kidding at all, I hate how my temper is extremely short on them. It makes me feel great but I would rather be nice Jenn/mom than scary Jenn/mom. Don’t get me wrong, when I get to feeling really bad they help so much. They are a quick fix to a flare up so I would rather them just be that. An emergency med. The doctor wanted me to come in on Monday to see her so we could talk about what was going on.
She was very impressed that I took photos to document my health. She had a nurse practitioner with her and asked her what she thought my rash looked like. The np immediately said “lupus”. Yup, the doctor replied. So back to lupus it is. She said that if you looked up Lupus or turned to it in a book about lupus, you would see my face because the rash was perfect lupus, as she said. She wasn’t trying to be mean or disrespectful but more excited because it seems that we are on our way to truly diagnosing me. Yes, I have had a positive a&a and a negative. She said its all about labs being thorough. So we are going by the positive one since I was extremely flared up when I had that one done. The question is do I have more than one auto-immune disease? She is questioning whether or not I have some sort of arthritis with lupus. We will find out soon. I went off of my humira and the way the doctor put it I will either be fine in two weeks or at my worse. I am scared but its something we need to do to get to know my body and health a little better. The doctor put me back on Hydroxychlor and an anti inflammatory called Zorbolex. I have an emergency steroid pack just in case I were to start hurting soon. I am scared because I woke up this past Wednesday morning very stiff. I will keep my doctor up to date with every symptom I have a long the way and she will see me if need be but I won’t go back to her for another 3 months.
Hopefully we are on a good path to a good medicinal regimen now. All I want is to feel normal for more than a few days at a time. Not hurt and be able to enjoy my kids without being in so much pain. I have been feeling great lately and I know it is just a flare up. To be honest I am glad it happened because without it we would not have been able to diagnose me with lupus. The pain gets intense sometimes and its hard not to complain or wish for no pain. I am dealing with it. I am very thankful for my husband/best friend. He is the best support I could have asked for through out these couple years of trying to figure out whats going on. I was very upset on Monday when I left the doctor because reality set in but he made it all better by just talking to him. He knows how to settle me down, make me feel good and know that everything will be ok. He puts my fears to rest. I love that man. Having support is so important with any auto immune disease. I feel for everyone out there who is living the AI life. It is no fun but we have to do it because it’s our life.