Why I Should Not be Pitied

During my last Rheumatologist appointment at the very end my doctor, who spends everyday seeing children with rheumatic conditions, gave me the most heartbreaking look of pity ever saying that I need many doctors just not her right now. This was not how I pictured the appointment where my joints were finally doing well to go. In my head I figured if I ever got to a point where I could go a full year without seeing a rheumatologist it would be a happy occasion. This had been the appointment I had been waiting for and my joints behaved as I wanted them to. Yet the look the doctor gave me at the end is what is ingrained in my memory.

Yes, I am sick. No, I do not enjoy getting about 95% of my nutrition through a tube. Yes, I wish I could reliably stay vertical whenever I please. Yes, I do miss gluten sometimes. Heres the thing though, even though I wish my health was different, if changing it meant I risk changing other aspects of my life I would keep everything the same.

My life is pretty darn good. I am a college student that loves my major. I am working towards my dreams, getting closer everyday. Unlike many of my friends who spend hours looking for jobs to no avail, I practically fell into two jobs, both of which I love. One job I would have never gotten if it was not for being diagnosed with Celiac during my Freshman year. On top of work I am part of a couple amazing student organization that give me leadership roles and the opportunity to help others. Best of all I have the most awesome people I know as friends who always pick me up when I fall down (some of which I met because of my horrible health).

Impromptu Concert in NYC

Cause what's better than lying in a hammock and laughing till you cry?

Classy Roomie Dates!

One of the most amazing people I would have never met if I wasn't sick!

I may not have my health but I have so much more. My life is better than many people I know who are completely healthy. That is why you should not pity me, because my life is pretty amazing.

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The Swollen Wrist

This morning I woke up to a red painful swollen wrist. My right wrist was not happy or useable for the better part of the morning. Of course my mom wanted to make a rheumatologist appointment for this week but I really did not think it is worth it. Since I am now in the 2 week period before my hip surgery I can not take anything but Tylenol anyway (no voltaren or fancy cream), so there is not a whole lot that can be done. We finally settled on me going to my GP (for the 2nd time in one week as I had a pre-op appointment with him on Monday), and I took a picture so I can show my rheumy at my next appointment. I managed to get an appointment at 11AM because my GP was in the office this Saturday. By the time of the appointment my wrist looked pretty normal, although I had the picture so he could see something was up. He had it x-rayed just to rule out any issues non rheumatology related, and as we both guessed the x-rays came out normal. My Lovely Wrist this Morning I was left wit...

The Perfect Body?

Today I am going to write about a taboo subject- body image, and how living with chronic illness/pain has affected it. I get told how great my body is a lot, I am tall and fairly skinny. Not to be egotistic but I look pretty good in a bikini. I should love how I look. I should be confident of my body, after all I just bought a pair of size 2 jeans. Yet I still struggle with loving my body. My New Jeans! In middle school I thought my legs were fat, that was when I had muscles from horseback riding, today I miss my muscular legs. My thighs tend to be two different sizes, the left one is almost always smaller. The reason for this is simple, my left quad has atrophied from months of limping and being on crutches when I was 15/16, at one point it was so bad my doctor measured it and the difference was a good 2 cm in circumference. Today they are almost the same size, and probably look the same to anyone else, but to me they still look different. If you haven't guessed it yet, ...

I Am Still Me

In the past two years it seems like my medical issues have become part of my identity. I am the girl always on crutches or limping, the one who doesn't participate in gym. No one asks where I am if I am not it class, they know I was probably at a doctor's appointment or if I come in a period or two late my friends know my shoulders are probably having a bad day so I had to take a bath to get rid of morning stiffness. I am not sure when it happened but people are now more surprised when I can walk then when I can't. Sometimes it is really hard for me to move past the medical parts of my life, because it does affect all the others, but it is important that I do. I try to do everything I used to do, which is hard but aside from athletic activities I have done a pretty good job managing. I can't always do everything I want to but I prioritize. There are a couple things I refuse to let my health affect. Debate is something I don't let get affected, since I have ...

Life with a Flare

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