Life with a Flare

Dear Illnesses, Enthesitis- You are my oldest constant companion. For years no doctor could find you and yet I was well aware of your presence. At age 10 you started to attack me, stripping me of my active lifestyle. For all you took away from me you have given me just as much if not more. You taught me how to fight and that doctors do not always know best. You taught me perseverance from a young age. Without you I do not think I would be able to handle my other health issues. Thank you for preparing me for the world. I wish you waited a little longer to show up but I am glad you came. Uveitis- You took me by surprise, possibly the only condition to accomplish that. I will never forget the day you were found in my left eye. I was scared and not sure what lied ahead. I still have a fear of eye drops and all things near my eye thanks to you. You taught me sometimes I have to do things I hate but thats just the way it is. AMPS/RSD- You were the first to affect my nervous system, for...

If you have been arounds this blog for a while you know at the end of the year I choose a song to go with the year. This year's song is Be Okay by Oh Honey.  I choose this song because I feel like it reflects the attitude I have had the year. Even through hell this last year it has also been one of if not the best year of my life. Almost all the good things that have happened have somehow been results of my health. In the beginning of the year I was newly diagnosed with Celiac disease so I went to the campus dietician. Little did I know at the time what a major role she would play in my life. A couple weeks later I started babysitting her kids 4 times a week and her family became my second family. Not only that I know if I ever need something I can ask her, she has taken me to the ER and I have stayed at there house when I wasn't feeling good. I can not thank her and her family enough for how they take care of me. The same time I started working for them I was asked ...

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 pr...

Since being diagnosed with Celiac in December leaving my dorm has taken more preparation than it used to. Every meal and snack has to be carefully planned out., each restaurant research, all snacks packed. So going to Celiac Education Day at CHOP was quite a treat, I only had to bring my cell phone and wallet with me. For the first time since being diagnosed with Celiac I didn't have to worry about it, irony at its finest. The day was amazing. I got to play with adorable children, one three year old informed me that she had Celiac and a wheat allergy, and was very excited to learn that I have Celiac as well. Even more exiting I could eat everything! There was a ton of samples! There were a few things that stuck out for me. First of course were Sweet Note Bagels . As a Jew who grew up right out side NYC, bagels play an important role in my life. Between finding out I probably had Celiac and the final blood test the two things I got while in NYC was a bagel and a black and white ...

Two weeks ago I started to go to the bathroom like 5 times a day, all the food I was eating was going right through me. The whole things was unpleasant to say the least. I was constantly battling dehydration, and barely winning. With Gatorade on my side I survived (on a side note as a child I was only allowed Gatorade when I was sick, so I associate it with stomach bugs). By the end of the week I was a bit concerned and after some telephone tag with my GI's nurse I had an appointment first thing Monday morning.  Gatorade and I have a love/hate relationship. At my doctors appointment we decided to run a bunch of test. So far only my blood test came back but so far so good. Celiac panel was clean, no signs of ingesting gluten. No indication of Crohn's (which was the worse case scenario). My white blood cells and platelet counts were both low, so the guess at this point is I have an infection and it trigger my regular symptoms to flare. On Monday my GI also advised me to cu...

Celiac Update I started meting with the dietitian on my campus and she is really great (I actually babysit for her kids now). She had me keep a food journal, and we saw I was not eating enough. I added in snacks, I try my best to get two in a day but some days just go better than on that front. I can't seem to break 125 lb, which is okay if I maintain it but not id I lose anymore weight. I also met with Disability Services on my campus and was able to get my meal plan down graded so I am mostly cooking for myself. I was also able to get disability housing for next year so I am getting an apartment with  full kitchen. Last week I saw my GI. She prescribed Periactin to help my nausea (which is why I have so much trouble getting enough food). I am only taking one pill a day right now but we may up it this week. The reason I started with such a low dose is because it causes severe drowsiness. I was actually falling asleep in class the day after my first dose as I was drinking cof...

I haven't ha time to write in forever. Over winter break I was working two jobs (one was full time and one was part time) so I have barely had time to breathe. I am happy to be back in school I actually have more free time to just hang out. In good news I think I forgot to write that back in December my OS released me from his care, yes that means no more appointments with him or at HSS. I can't believe that after all I have been through I am done with Hospital for Special Surgery. I definitely will not miss that place, although the doctor did add something about calling him if my knee gets worse...you win some and you lose some. As far as the whole Celiac thing is going, that has become quite an adventure since getting back to school. My school has a gluten free area but it hasn't been stocked since getting back from break, so each time I try to get food I have to chase down someone to get me some frozen meal and then I have to microwave it, the whole thing is really f...

Two little words that mean yet again my immune system still hates me. Apparently attacking my joints and eyes was not enough so it decided to also attack my small intestines. At least after months of stomach pain, more vomiting than I care for, a late night ER trip, a couple blood test, the mis-diagnosis of gastitis, and finally an endoscopy there maybe an answer for my symptoms. Yes, I said maybe. As with everything test I have done of course nothing came back clear. 3/6 of the biopsies of my small intestines had signs of Celiac and my Celiac panel came abnormal but not negative. Between my abnormalities and symptoms my GI decided I probably have Celiac Disease and need to start a strict gluten free diet and in six months I need to have another endoscopy to see if my small intestines are healing. While I generally try to avoid anesthesia (not doing such a great job of that this year), the endoscopy was actually not that bad. They didn't even put the IV in m arm until I was out...