Let me try and recap all my doctors appts and what we have found out (which isnt much unfortunately). My first appointment was to establish a new primary care doctor. The doctor I chose is a good friend of Harrison's family. I informed him of my whole history and all my current issues with my neck and all my joint pain. He reccommended a round of oral steroids to see how my body responded. He recommended appts with a rheumatologist and neurologist. I started the steroid pack and within about 2 or 3 days, my pain was virtually gone. It was a miracle. This meant that I had some form of inflammatory process or autoimmune process going on. With my symptoms, I was almost sure that i had rheumatoid arthritis. When i went a few weeks later to the rheumatologist, he did a very thorough physical exam and did endless amounts of blood work. He said that I presented as a classic fibromyalgia patient, not RA. And all my blood work came back normal, as did xrays of my knees. While I was discouraged to not get a solid answer for all that is going on with my body, the fibro does explain some things....although its not a very well understood or easily treatable disease.
The next appointment I had was with the pain clinic here. I can not tell you how long and how much of a pain it was getting an appointment with them and getting them to get my records from Nashville. The appointment was very much a disappointment. I met with the nurse practitioner of the head doctor of the practice. Lets just say she didnt have the best bed side manner. She was rude and made comments that made me feel as though she thought i was just a drug seeker. Apparently, because of abuse issues of oxycontin in east tennessee, this clinic does not prescribe it. This is the main drug I have been on for my pain for over a year. I dont have a problem switching medications, I am just terrified....TERRIFIED of withdrawal. I voiced my concerns and she showed no sympathy or emotion. I left the appointment feeling very judged and very uncomfortable. I have an appointment next week with the main doctor and I am praying that it goes better than the first. I am very close to the nurse practitioner of the pain clinic in Nashville and I had a long, long talk with her about the appointment and how i was feeling and she told me that she would continue treating me until I was settled and comfortable with a pain clinic here. So it gives me some sense of relief knowing that I have a back up plan.
The subject of my medication is such a tough issue for me. My bathroom looks like a pharmacy. I am taking more than 10 pills a day now between painkillers, high dose anti inflammatories, medication for nerve pain, anti depressants(which are also supposed to help with the fibromyalgia) and others. It scares me to think what all these medications are doing to my body. I am scared that it will affect my ability to get pregnant, stay pregnant, or have a healthy baby. If it werent for my health issues, Harrison and I would probably be starting to try to have a baby, but of course, that is out of the question with all the medications I am on and not knowing exactly what is going on with me. I am going to go see an ob gyn specialist soon to discuss some of the issues and concerns. I have days when i just want to be clean of everything that i am taking and just flush everything down the toilet but i know that i cant do that because stopping some of these drugs cold turkey is extremely dangerous.
I also had an appointment with a neurologist. He is just going to address the neck pain. He put me on a medication for nerve pain that I have to work my way up on the dose up to 600mg a day. So i am in the process of that right now. He also wants to do an EMG study. For those who remember, i have had this test done last year and it was traumatizing. It is a test that uses shocks and needles in your muscles to test for nerve damage. It is very painful and pretty barbaric if you want to know the truth. I'm not sure when i am going to have it done.
After all these appointments and only finding out about the fibromyalgia (oh and I have carpal tunnel in my hands) we are going to meet again as a family with my primary care doctor and assess where we are. It is so frustrating to be in this place right now. I have all this pain all over my body but all the tests are coming back normal. I feel like nothing is ever going to explain why i feel the way I do. A few weeks ago after a doctors appointment, i hit one of the lowest points that I think I have ever been at during this whole process. I feel as if my life has lost most of its meaning and purpose. All I do is go to one doctor after another. I'm tired of living the life that I'm living. Every day, i miss my job more and more. I miss having a reason to get out of bed. I miss having goals and being driven to accomplish things. I feel lost right now...as if i'm in the woods in the middle of the night, not knowing which way to turn to find my way out of all the darkness and every time i move, i run into something else blocking my way.
I do have some wonderful, joyful news to share. On May 8, after a long, tough road, my sister Katie and her amazing fiance Johan got married on top of a mountain in Gatlinburg. There wasnt a cloud in the sky, which is truly what they deserve for their future after all they have endured the past year. For those who dont know, Johan was in a very bad motorcycle accident back in October. He suffered many injuries, including a minor stroke. He has had a miraculous recovery and has fought hard every step of the way to be where he is today. It was a wonderful celebration and great to see all of his family from Denmark under joyful circumstances. I'm so happy for them and am thrilled to finally have Johan as part of our family.
Well i guess thats all for now. I wish i had good news to share about my health but as always, i'll try and keep everyone updated as best as possible. As always, thanks for reading.
