To say getting diagnosed with Lupus has been riddled with obstacles is an understatement. The truth is I still don’t have a definite diagnosis. I have partial possibilities that lead to more questions. It’s extremely frustrating to feel like your body is betraying you and there is no explanation.
I have very few for sure answers. One thing we know is my blood test show a positive ANA. When I went to see a Rheumatologist he ordered additional blood work. He wanted to rule out other diseases, make sure my ANA wasn’t a false positive, and attempt to get a clearer picture of my health. The process to gain any insight kept feeling like it was getting more and more lengthy.
After a few weeks my second round of blood tests results were finally back. My ANA test was still positive but considered a weak positive. Even with a list of symptoms including a photosensitivity and a positive ANA I was NOT diagnosed (I am beyond frustrated by the point). Instead the Doctor decided he wanted to monitor my health with follow up appointments every 4-6 months. I, of course, was told I can come in any other time, if needed.
The worse part was leaving the office with no understanding of what was happening to me. I had no clue how to ease my pain and discomfort. I felt like I was left to deal with it all on my own. My hope was (after continuous appointments) this would be the one I’d be able to start to comprehend and take action. I naively thought I would know how to manage whatever was going on.
I actually left with more questions than I ever had before. Will this be my life? Is there nothing I could do? Why can’t the Doctor give me more answers? I began to wonder if I really was sick or if I was having the worse case of the placebo effect.
I went home confused and questioning everything. My husband and I were so upset. I tried to make sense of it, trying to figure out, on my own, what the heck was going on.
Looking back I see I was not being realistic. After reading a ton of articles and forums, I realized it’s rare to get easily diagnosed with an allusive disease like lupus. It’s often misdiagnosed or confused with other health issues.
The difficult part for me was wondering if I’d ever feel okay again. I wanted to be able to have energy and play with my kids. I needed to cook, clean, and spend time with my husband. I desired some normalcy and no longer wanted to be controlled by this. I was already unable to go in the sun due to my Photodermatosis (discussed in previous post) but other issues kept getting stronger and harder to ignore. A short list of symptoms include: anxiety, constant fatigue, swollen/ achy joints, nausea, lower back (kidney) pain, easy bruising, brain fog, dry mouth, frequent urination, headaches, hair falling out, among a list of other issues.
For awhile I believed I was just a sickly person. I had no clue these symptoms could be due to one disease. I couldn’t accurately describe to other people what was going on. They saw a healthy person on the outside unable to see the torment I was feeling within. The harder I tried to control it the worse I felt.
I got to the point where I believed I would never know what was happening. In many ways, I still feel I am in the same spot as I was before my first appointment. I started to think I made myself sick especially since my Doctor only wanted to monitor me. With no diagnosis I thought I must be healthy and I needed to stop creating issues.
Two weeks later I had a reality check and knew it wasn’t in my head. There was no longer anyway to deny that I was not in control of this. I woke up stiff and struggling to move, my fingers started to swell and it was painful to bend or move them, I could barely grip anything. My feet swelled making it painful to walk. My lips tingled and felt puffy. I was extremely tired and had major brain fog. This is the short list of everything I was feeling.
I decided it was time to take action and empower myself. I needed to seek as much information as I could. I had no choice but to get educated about autoimmune diseases. I could not go on being a shadow of myself. It wasn’t fair to me or my family.
I wanted to go to my next Doctor’s appointment armed with knowledge. I am not even close to having all the answers. I’m learning more everyday and have recently learned certain foods and ingredients are harmful for me. It’s alarming to see all the things that can affect me and the way I feel so easily. It’s been a lot of work but has paid off greatly already.
I hope in the coming months I get closer to knowing exactly what is causing all these health issues. When I go to the Rheumatologist again, I plan to have a list of my own research to inform him on what has helped and impacted me. I’m going to cross my fingers I get a clearer picture on what I can do to manage it all. Until then I will stay positive and keep going.