Chronic Illness: The Invisible Disease that Has Changed My Life Part ll

If you’re reading this, that means you must have enjoyed part l enough to come back for part ll. With that, let’s continue this rollercoaster! Throughout the months of June, July, and August I began having minor symptoms that I wasn’t able to relate what they were so. . .I just blamed my thyroid. 

My hair began falling out a lot! I can’t say I was shedding like my dog because my dog doesn’t shed (thankfully) but I was shedding so bad we had to use drano regularly. I also began having an extremely high heart rate. My husband and I started hiking a lot that year and I truly enjoyed it, it was a new hobby for me. However, I was having to stop so often just to calm my heart rate that it basically doubled the hike time. I began getting this rash on my face that would go from one ear (sometimes even my ear) across my nose to my other ear. It was just bright red and hot. It was so hot that it would burn my eyes. It didn’t have a pattern and I couldn’t find anything that ‘triggered’ it. It began to get difficult getting out of bed because I was just exhausted. I would go to work and come home just to take a nap. I could wake up on a Saturday, take a shower and eat breakfast. . . then go back to sleep. . .wake up to eat lunch. . .and go back to sleep. Being so exhausted made me even more exhausted. Then my ankles started swelling. I was constantly thirsty, which meant I spent a lot of time using the bathroom.

Finally, I realized that something just wasn’t right and that I needed to go to the doctor. In September, I went to my primary care doctor and expressed my concerns. My doctor explained not to worry and took a few labs.

Need to know information: I had quite a few people tell me that my symptoms aligned with an autoimmune disease known as Systemic lupus erythematosus (SLE). If you don’t know what that is, please click on the link to learn more. I had researched lupus and was concerned that was what I had. My ANA test results came back abnormally elevated. I’m not sure if you know this or not but your blood has patterns to it. I will not pretend that I know why we have those patterns or what they mean but mine was abnormal. With my ANA being elevated and my blood pattern being abnormal, my doctor was sending me to a doctor that specializes in these things –rheumatologist-.

Rheumatologists specialize in diagnosing and treating diseases of the joints, muscles, and bone. These doctors are in such high demand that I was put on a waitlist. While on the waitlist I began experiencing a lot of pain in my lower back and hips as well as numbness in the fingers and toes. The last week of October, the doctor had a cancellation and I was the next on the waitlist. I got my appointment and Kaden and I made plans to go. I wrote many lists of questions and concerns that I had. However, I forgot those lists on the day of the appointment.

The doctor answered all of the questions that we could think of but ultimately told us that until he got the labs that he ordered back, he couldn’t give us solid answers. He told us that he was debating between my symptoms being Progressive Rheumatoid Arthritis and Ankylosing Spondylitis. He ordered TWENTY-TWO vials of blood to be drawn. I remember sitting in the lab chair with Kaden in the corner and every time they pulled a tube off and put another on Kaden’s face just dropped over and over again.

We had another appointment scheduled three weeks later and got the results of the bloodwork.

We were told that there were some inflammation markers and that basically my body doesn’t know good from bad (funny right) and that it was attacking itself in many different ways. He said that he was leaning more towards Ankylosing Spondylitis. He explained that he would be putting me on an immunosuppressant to stop my immune system from attacking my own body. He said that this meant shutting down my immune system. He explained we would have to be careful and wash our hands a lot.
This was a scary time for myself and I am sure it was for Kaden as well. We got the order for the immunosuppressants and waited.

If you have never worked with insurance to get a ‘specialty’ medication, allow me to be the one to tell you that it is hell. It was a horrible experience and I wouldn’t wish it on my worst enemy. It took us 4 months to get the medication approved.

Thankfully after 6 weeks of waiting the doctor’s office began supplying samples for us. However, those 6 weeks were miserable and I remember them like it was yesterday. In order for me to explain that to you. . . you’ll have to come back for part lll.

Yes, I just did that 🙂