Tuesday, June 23, 2009

So Let Us Introduce Ourselves…

Well I’m a 21 year old senior in college from Northern New Jersey. At 10 months of age, I had tripped over some toys on a carpeted floor and buckle fractured my left arm. Everyone thought it was a little odd, but eventually got over. Fast-forward to age 8 and my fourth broken bone and my Mom started to get a little suspicious. So off we went to see a geneticist. After a full and tedious examination, I was diagnosed with Osteogenesis Imperfecta. OI is a genetic bone disorder which is often adorably titled the “Brittle Bone Disease.” Basically, your body’s production of collagen isn’t exactly up-to-par and because of that, your bones are not nearly as strong as they should be. In addition to this, muscle weakness, fatigue, joint laxity, scoliosis, and many other things are typically present as well. At the time of my diagnosis, this disorder was not very well known and the only advice the doctor gave was to be careful and limit my physical activity.

So we left it at that. I limited my activity and surprise, surprise, still managed to break bones. Around 14 or 15, my pain had jumped off the charts and we found a “team” of doctors in a hospital in New York City. I found a new geneticist, rheumatologist, and orthopedist. My diagnosis of OI was confirmed as a mild case and I was also diagnosed with Juvenile Rheumatoid Arthritis. They assumed the pain I was in was caused by the JRA. So I went on anti-inflammatory medication and aqua-therapy. Problem was the pain wasn’t going away. The pain in my lower back and right hip was so excruciating that I missed almost a month of school in just one marking period. So we trekked on and found more doctors.

My battle with this unknown source of pain would continue for 2-3 years with new doctors, treatments, medications, physical therapy, and tons and tons of testing. I finally found a new rheumatologist who dismissed my diagnosis of JRA and gave me a new, even more illusive diagnosis: Fibromyalgia. After years of what felt like being tossed around from doctor to doctor, test to test, and medication to medication I was skeptical and ignored my diagnosis, just waiting to see what the next doctor could concoct. Now, 4 years later, after a confirmation of my FM diagnosis, I am accepting my diagnosis of FM and learning to live as a Fibromite.

What about you, what's your story?


  1. Hi Jenn!

    Thanks so much for the invitation to read your blog! I really love to read blogs about others who have this debilitating disease because it truly makes me feel like I am not alone.

    This is a wonderful start and congrats on starting a blog of your own! It takes a lot of courage to write about your life-- especially if you are shy (that would be me hehe!). So I commend anyone who does it.

    Thanks again and I look forward to your next post!

    Stay fabulous!
    Love and friendship,

  2. Hi Jen,

    Thank you for your comment on my blog. Though it is hard to keep up a blog on a consistent basis, I try really hard to write an entry one to two times per month. Stay strong!

    We fibromites have to stick together.

  3. Hi Jenn, thank you so much for your encouraging comment on my blog. I'm looking forward to reading more about your life. I'm following your blog as 'Josh and Jess' which is my blogspot blog for my 2 Shelties.
    God bless and take care!