Chronic Illness: The Invisible Disease that Hs Changed My Life – Final Part

After 6 weeks of being on samples, we were finally able to start getting the shipment. In early June I went to my OBGYN for my annual check-up. While there, she noticed nodules on both sides of my thyroid. Reminder I already have been taking thyroid medications at this time. Long story short, I got in to see an Endocrinologist and was told that I have something called Hashimoto’s Disease. He ran labs and my thyroid hormone’s were where they needed to be, so no changes were made and follow up every six months! Also while at my OBGYN it was ‘suggested’ that I have Endometriosis. When I was sixteen, I was also told this. However, if you don’t know anything about this disease, it is difficult to diagnose and you have to have a procedure done to do that. At the time, I did not want to do so.

Fast forward to July 2024. I had been experiencing odd symptoms such as; a tingling feeling in my back, arms, fingers, and face, I had been struggling to wear certain materials (which had never previously been an issue for me), I couldn’t get comfortable in bed at night due to this terrible pain in my lower extremities that no medicine would help. I went to my Rheumatologist for a follow up and expressed these things to him. He referred me to a pain specialist. At my visit with this doctor she explained to me that I had a form of neuropathy. She also explained that there are hundreds of different kinds and types of neuropathy. She told Kaden and I that they group them all together and call it Fibromyalgia. She told me different treatment types and that most often a medication called Lyrica or Pregabalin is most beneficial. She explained the side effects and the big things to look out for. I began treatment for that and slowly increased my dose which slowly took away the pain. 

In the most recent months I have gone to visit an Opthamologist due to inflammation in my eyes. However, it is not arthritis, it is sleeping with my eyes open (creepy right). Even though it was such a minor visit, I felt SO much relief walking out of that doctor’s office without being told some form of bad news. For months that was not the case. I then went to my Rheumatologist and he went over results from my most recent blood work. Kaden and I were told that the concoction of medication that I am on is no longer working (which I’m not entirely sure it ever worked in the first place) and that we needed to start migrating to a different concoction. 

At this point I felt defeated. It is difficult to explain the feeling of having SO many different things wrong with you that are invisible. When I go about my daily tasks; work, school, grocery shopping, etc. it is easy for people to see a healthy 25 year old. I really don’t know how to explain the way that it feels. I have my mentally good days and I have my mentally bad days. There are days that I hate the thought of even getting out of bed, not due to physical pain in any aspect (even though it is there) but because I feel mentally exhausted. I told Kaden just the other day that it is so unbelievable that I walk around every day at about a 3 or 4 in the 0-10 pain scale. That is a good day! My average day is 7 or 8. I sweep and mop my floors, I go to work, I grocery shop, I do my laundry, all while sitting at a 3-4. There are days that I go about doing all of these things while in the amount of pain that would send someone else to the hospital. I can’t go bowling anymore (and I love bowling, even though I am terrible at it) and I can’t hike anymore. My doctors all say to learn my limitations but what if I don’t want limitations? I just want to be and feel normal. . .