A bit about me

---

 I was diagnosed with x linked hypophosphatemic rickets when I was 5. I took medications to help my bones from that age on. I still ended up having to have hip replacements at age 39 due to severe osteoarthritis caused by the XLH. This disease is painful and since I was born with it, I don't know what it is like to be completely pain free. The medications have also caused me to be in stage 3 chronic kidney disease. Unfortunately that also means I cannot take anything for pain except Tylenol.

  I started to have severe headaches in my early 20s. I went to numerous neurologists over the years that brushed off the headaches as chronic or atypical migraines. None of the usual migraine medications would help. On April 1, 2014 I went for what I thought was a routine eye exam with dilation. I had been having some weird visual problems that I told him about. The opthamologist looked into my eyes and asked me if I had been getting a lot of headaches. He took pictures of my optic nerves and told me I needed to go straight to the emergency room. That my optic nerves were severely swollen and it was very serious. At the ER they did an MRI to rule out a brain tumor. I then had a spinal tap to check the opening pressure. Mine was so high it could not be registered other than a 55+. I was then diagnosed with Intracranial Hypertension (sometimes called pseudotumor cerebri). I could not take the standard drugs they used to try to control the high pressure because of my kidney disease. I saw a neurosurgeon 2 days later and had LP shunt surgery the 16th of April. I did not realize how dim my vision had been until that first spinal tap and then the shunt placement. Unfortunately the shunt alone did not help my optic nerves to go back to normal and I was rapidly losing peripheral vision. I had optic nerve sheath fenestration on both eyes last year to relieve the pressure off the nerves. So far that has helped my eyes but I still get headaches, have balance problems, severe fatigue, ringing ears etc.

 In the fall of 2015 I started to have a problem with extreme stiffness in my fingers when I woke up in the morning. I kind of brushed it off. Then about a month later both of my knees swelled up and got red and very warm. My primary care doctor did a bunch of blood tests and sent me to a rheumatologist. I was then diagnosed with both Rheumatoid Arthritis and Sjogren's Syndrome. 

 It has been quite the battle to not give up. To not wallow in misery and question "why me?". I struggle every single day to keep a smile on my face despite the pain I am in and enjoy life to the best of my abilities.