Monday, June 29, 2009

Inspiring Quote

Today has been a pretty tough day... mentally, physically, and emotionally. Yesterday I stumbled upon a quote and it has really resonated with me. I think I'm going to turn it into a piece of wall art somehow.

"Everything was beautiful and nothing hurt."

How lovely would it be to have a day like that?

Friday, June 26, 2009

Let Your Voice Be Heard

I recently had a lil' crisis with my stomach,to make a long story short, I was on antibiotics for a sinus infection a couple of months ago and the medicine killed all of the good bacteria in my stomach--not fun! So I had to have a sigmoidoscopy, which is just a terrible, terrible test to see if there is anything wrong in your colon. So my mother and I go to the doctor and he comes into the room and promptly and rudely tells me that my mother cannot stay with me during the test...uh 'cuse me? His reason was that he does not know how she's going to react to the procedure. Kind of understandable. I try to reassure him that we've been through a lot with doctors and that she can handle it well, and that I handle it a heck of a lot better with her in the room. He still said no, with no concern, like it was any other day. So I put on my big girl underwear and go with the flow (no pun intended). Instead of reassuring me and relaxing me, he started babbling off medical terms about where he was in my colon, etc. He also then decided that it'd be a good idea to act completely surprised (honest to goodness!) when he did not find any tumors. I didn't even know that there was a good possibility that I had a tumor. That was never discussed. Apparently he was seriously concerned that I could have had colon cancer. It would've been nice if he told me that. Ignorance is not bliss.

What he, like many other doctors did was completely disregard a patient's request and well-being. I was a wreck and actually felt really violated--he did not do any unprofessional, but the way it was handled really really left something to be desired. Yes, I know there has to be some boundaries, and there are times when it's inappropriate for you to have someone in the room with you. But come on, a girl should be able to have her mother (significant other, friend, the cookie monster, whomever) hold her hand if she wants to. I told him this and his response was that in his 30 years of practice he's never had a family member in the room with a patient. Well buck-o, in my 21 years of life I've almost always had my mother in the room with me. She knows me. She knows when I'm about to have a panic attack the size of Justin Timberlake's ego. She knows what to say to relax me, soothe me, and make me laugh. She makes these scary, new tests bearable. I'm good with the MRIs, X-rays, bone scans, cortisone shots, and trigger point injections; I'm pretty sure that by now I can do them in my sleep, but the stomach thing...definitely not for me.

See the problem with new doctors and jerky doctors is that they don't know what will and will not put their patients at ease. They also presume things. He didn't realize that we have been through hell and back again since I was a baby. If she hasn't attacked or sued a doctor yet, I highly doubt she's going to start now, and believe me, she's had cause to in the past. See, the problem with doctors is that they don't get to know their patients. We need to connect with them so that we can build a solid and trustworthy rapport. I'm not talking about cheesy connections, but professional connections where they know where we're at physically, emotionally, and mentally. They need to know what our expectations are and what we are willing and not willing to do. They need to know us! We need to start demanding an actual conversation with our doctors; it's the only way to make it bearable when going to doctors. And why shouldn't we? We are entrusting them with our very precious lives! They are temporarily employed by us, why do we feel the need to bend to their wills? We need to ensure that the doctor is there to make us as comfortable as possible while also maintaining our health.

So what I'm encouraging you to do is simple: speak up. If you're uncomfortable about something, speak. If you need a minute to collect yourself, speak. If you want to take a different path, speak. Speak up and eventually a doctor will hear you.

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?