Last week, I had an appointment with my rheumatologist that I was a little anxious about. The last few visits to any of my chronic illness doctors have not been the most encouraging as we have gotten to the point where we have exhausted a lot of our options. John wanted to be sure that he made it to this appointment with me since we were going to be discussing future treatment options.
Since my last appointment (which fell right after I got out of the hospital for the third time this summer), I had boycotted my medications so I wasn’t sure how he was going to take it. I had gotten frustrated taking pill after pill but not having any results. Sometimes the side effects were worse than the initial symptoms and after a while, enough is enough and I had had enough. Granted, I don’t feel any better not taking the medications but I do not feel any worse either. I previously talked to Dr H (my obgyn) and she was ok with my decision except for the fact that I quit my thyroid medicine too (a big oops on my part – I did not really plan that one but kept forgetting). While I was already stopped, we decided to wait a couple of weeks to check my levels with the medication out of my system to see how it is functioning on its own since I was borderline when I started treatment. I should have the results this week.
When I told Dr. P about stopping the medications, he was supportive. Unlike a lot of doctors out there, he is in the “less is more” category. My first rheumatologist overmedicated me to the point where I could hardly remember my own name (and I only wish I was kidding) so it is nice to have someone who was not always pushing medication. Still we are facing the dilemma where my fibromyalgia symptoms are not being controlled, with or without medication. A new and rather starting symptom has made an appearance in the last few weeks as I have started experiencing numbness in my ring finger and pinky in both hands and my outer two toes. Since it was appearing symmetrically, I knew I hadn’t damaged the nerve as I would have to have injured four different nerves in the exact same way and function was not impaired, just feeling. After examination, Dr. P believes that it is just a new manifestation of fibromyalgia and nothing to be overly concerned about (although we will closely monitor). We are running a full panel of blood work just to be sure there is nothing hiding autoimmune-wise that could be affecting my chronic illnesses. Last spring, I also had good results taking an anti-inflammatory but then had issues with my liver count rising so we were not sure if it was a direct result of the medication or if it was tied to my soon-to-be-disclosed bowel obstruction so we are checking current liver function to determine if restarting an anti-inflammatory is possible.
The other item of discussion was disability. Honestly, it is a discussion that I never, ever could have imagined having at 31 years old. Ever. It is also one that has taken me a long time to even consider having it. It took much prayer, deliberation, and lunch date with a mentor to admit that it needed to occur. As it turns out, my rheumatologist also reviews charts for disability cases for insurance companies and while he was not trying to be discouraging, he wanted to be honest and helpful. The issue with pursuing disability with fibromyalgia is that there is no one test that can diagnose the illness and physically show its impact on the patient. There is no x-ray, MRI, or even blood test that I can show as physical proof of my diagnosis. He said that my endometriosis and chronic pelvic pain will be easier to argue since I have physical evidence, such as surgery photos, as evidence of my disease. However, even with my multiple diagnoses, disability will be a fight because of the invisible nature of my illnesses and my age. We had assumed all of this going in but I was glad we got the conversation started.
We are not 100% decided whether or not we are going to begin the disability process but we are definitely starting research due to chronic illness. I am going to start looking up all of the steps that are involved in the process and start gathering my medical records. We also need to start putting together a budget as obviously if the decision to pursue disability is made, our income will be greatly affected. We needed to work out a budget anyways so this is definitely motivation to quit putting it off and get serious. It is also a kick in the pants to start learning how to coupon which I have always wanted to do but have been too lazy (if anyone has tips on how to get started, let me know!).
So that is where I am at right now. I definitely have more questions than answers and I am definitely nervous and anxious about what lies ahead but there is also some relief in getting the conversation started. 2013 is shaping up to be quite possibly a life changing year.