Getting Diagnosed

Have you ever had the moment where you get such life changing news that you freeze and can see and feel your entire world crashing around you.  Everything suddenly makes sense and your brain is making connections and explanations for things you once couldn't explain. This was how I felt being diagnosed with Lupus. It was all very overwhelming, and you're not told how much your life will change, or how to cope with it all.  

I have been tired and fatigued my whole existence and never thought anything of it.  I thought waking up in the morning was physically painful for everyone.  I've always fractured bones easily and had numerous other injuries throughout my life and could never figure out why.  I had daily migraines and was told by doctors that it was hormonal and that I would outgrow it.  

Fast forward to age 23 when I was recovering from having the meniscus in my left knee removed.  I had made an appointment with my sports medicine doctor because I thought I had possibly injured my knee somehow by not resting it the way I was told to.  I had my strange bruising, swelling and my skin was very sensitive to touch.  My doctor looked at everything and said structurally I was fine, but he started looking up my symptoms and told me that I needed to see a rheumatologist right away.  He said he didn't want to scare me, but Lupus and Leukemia were both being flagged with the symptoms I was sharing.  

I called and made an appointment with a rheumatologist and right off the bat she wanted to get bloodwork done.  A few days later I received a phone call from her telling me that the bloodwork came back with positive markers for Lupus and that I needed to make a follow up appointment.  During this appointment she explained that I have Lupus and need to get on medicine for it to help keep my body from killing me. Lovely right? She put me on Plaquenil and said it's important to take it. Long story short, I had a severe allergic reaction to this medication and this doctor was not great about it, so I found a new one right away.

This new doctor explained how the winter weather would make me feel worse (explained a lot of past issues), that my job was too much for my health (I owned a performing arts academy), and basically how my life was over.  My job was becoming too hard on my body and my fatigue was out of control.

I ended up selling my business and moving to Florida, where I found an amazing rheumatologist who actually helps me but did end up diagnosing me with several more autoimmune issues, which leads to more questions, more coping and more advocating for myself.  

For me the hardest aspect of all of this is the financial side and the psychological side.  I was given all kinds of information about Lupus, but no information on where to go to help coping with this new information.  The grief and loneliness that comes with this type of diagnosis is unbearable and no one warms you about it.  No one around me understood how I felt and what I was going through. I was not only sick but learning to deal with this illness on multiple levels. My entire life changed with one diagnosis, and I was completely on my own to deal with it.