I went to the Duke Children's hospital this morning to see the Rheumatology specialist. This was a very special day for me, I have been waiting about 3 months to see this doctor and have been waiting almost 2 years to find out whats wrong with me. After countless doctors visits and blood tests, I was just sick and tired of being sick and tired. For the past couple months I have been doing research on my own to find out what was up with all the fatigue and pain I was enduring. I was about 98.739% sure I had Fibromyalgia or Chronic fatigue syndrome, they are basically the same anyway. My aunt and my mom both have it, and I have all the symptoms, so it was a pretty accurate assumption right? So, as I walked into the children's hospital this morning (which was at 9AM by the way! and its a 45 minute drive from my house!) I was nervous and scared but excited at the same time. We checked in and sat in the waiting room. As I looked around I saw so many sick children, most likely a lot sicker then I am. I felt like I didn't belong there, these kids need more medical attention then I do! I felt selfish for even going there. But then I realized, I am sick. I do need help. It all began to sink in that this isn't just the flu. This is not going to go away after a couple weeks. I have been living in denial for the past 2 years, believing that this was just going to pass. I was pulled away from this thought when the nurse called my name. As I walked back to my room, I saw sick little kids, heard them crying and had to think to myself, "okay Ellee, they may be sick and its okay to feel bad for them, but right now its time to focus on you! Its okay to feel bad for yourself right now." The doctors came in a did a full exam and asked a bunch of questions. Then we waited more as the doctor discussed my symptoms with a more experienced doctor, because this is the Duke hospital and most are new doctors, just out of college. Then they came back into my room and started to explain that I had Fibromyalgia. It was a bittersweet moment, I have waited 2 years and finally found what has been causing all my problems. But, this also means I will not get better. No one WANTS to get diagnosed with Fibromyalgia, but after all I have been through. I was relieved. I held back tears as the doctors explained all about this syndrome, not knowing I pretty much knew everything about it from my research. As the doctors left my room I couldn't take it any longer, I just burst into tears. This diagnosis is going to change my life. For the better and for the worse.
fi·bro·my·al·gia/ˌfībrōmīˈalj(ē)ə/
| Noun: |
| A chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas. |
|
2 comments:
My dear sweet girl;I cried as I read this. I cried for you for finding out that you have to live with this disease, but I cried for me, as well...for you know that I have it too. I am sorry that it is hereditary, for it is my jeans in which it came from. Fybromyalgia really, really stinks! But remember, God has a plan for you, trust in him and his grace and that healing will only come in his glory. I love you. And by the way, only a great writer can make their momma cry:)
Ellee - good writing made the eyes of your Mom's friend (me) water up.
Always remember how you titled your blog as it is important. "My Life with Fibro" states that it is YOUR life and not Fibro's life. Your life will be full of so many meaningful chapters and so many unique definitions. Fibro will only be one of them.
When I was 30 years old I was diagnosed with Ankylosing Spondylitis, which is a chronic disease that causes inflammation of the spinal area. AS is a form of arthritis that primarily effects the spine as well as other joints. This inflammation of the spine is chronic and will never go away. I manage it the best I can. I also know that, over time, the vertebrea are fusing together which makes me less flexible.
As I looked back on the symptoms, I realized that I began having them when I was 24 yrs old. I did not begin having tests done until I was 29.
So, although I do not have Fibro and I cannot directly relate to the fatigue that you feel, I can relate to the experience of getting a diagnosis that has no cure and will cause me discomfort the rest of my life.
I have a list of personal goals up on my white board in my home office. The 6th one down states, 'do not let AS define who I am.' I know that right now this must be hard for you. If I can help at all, I just want to tell you to never let Fibro define who you are. For 16 years now I have awoke each morning with some level of back pain (some days much better than others), but I get up and I move on.
You have a great example of this right in your own home. If I was asked to select 10 ways to define your mother, having Fibro, would not be even close to one of them.
I remember, after my diagnosis, feeling "why me?" Ten percent of males get AS and why was I the 'lucky one?' I still have days when I let that thought come in for a few minutes. But then I move on. The day I slide off the snow ski lift chair right at the end and plopped down on my spine with pain going all over, I was reminded that I was different. But I still got up and skied down that mountain.
Remember the title of your blog Ellee. Do not let Fibro define you. It is YOUR life and Fibro just happens to be one part of it. I can't wait to hear what wonderful things happens next in your life.
Eric Lipsitt
Post a Comment