Life with a Flare

Once upon a time this was a blog I updated on my health multiple times a week. I now realize since the whole NJ tube thing I have not given an actual update on my health. A lot has happened in the last few months to say the least. I think the best way to go about this would be to go by specialist: Rheumatology- As I mentioned a few post ago at my last appointment with my rheumatologist my joints were doing amazingly and I don't have to go back for a year. As of now I am only on celebrex for my joints, which I was really hoping to get off of but since sulfasalazine clogged my tube that went instead. The last week or two my left SI joint has been a bit stiff and sore but I am hoping tylenol will be enough for it. GI- In September I saw a GI at Temple Hospital who is supposed to be the top doc for gastroparesis. He put me on domperidone, which is not FDA approved and did not help. The only thing he had left for me was an experimental surgery with a 50-60% success rate so I am taki...

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...

Two years ago I was doing my research before my first rheumatology appointment and I discovered most people with autoimmune arthritis are on self injectable medication. 90% of kids with Juvenile Arthritis take a medication call Methotrexate, which can be taken orally but is mostly done by injection. Although I was also pretty positive we were not going to find anything at my rheumy appointment so I didn't think much about it. Once we discovered Uveitis in my eye though I thought my fate was sealed. Just under two years ago I was trying to prepare myself for the idea of sticking a needle in my leg. Within a few months of my then rheumy not doing anything I realized as long as I was under her care, for better or worse, I was not in danger of having to self inject. Under the care of my current rheumy the thought of possible self injections was on a very far back burner in my mind for a while but since my joints have done so well in the recent months it has totally disappeared. So to...

Remember last year when I started posting really sporadically because I was too busy living life? Well I wish that was the reason for why I haven't been posting lately but unfortunately I have been busy being sick. I have spent too much time at CHOP. Typing it all out would take a while so I am going to do a by the numbers post for the semester so far. 1 Hospital Admission 1 Gastric Emptying Study 1 DEXA Bone Scan 2 NJ Tube Changes 2 EKGs 3 Different NJ Tubes 3 ER Trips 3 Doctor's Appointment 4 Abdominal X-Rays 5 IVs 5 Trips to Interventional Radiology Countless Episodes of Tachycardia From My 4th Trip to IR At Least the X-Ray Rooms Look Like This ER Selfie! Yes I Spent Two Days in a Row in IR Just Getting Some IV Fluids! Sitting(top) vs Standing(bottom)...Eeeek! Two say I am excited for my cardio appointment is an understatement! 11 more days!!!!

My NJ tube and I have a complicated relationship. It is really easy to hate. After all who wants a long tube shoved through there nose, down their throat, all the way into their small intestines? Not me for sure. Its a nag, uncomfortable at times, and its a lot of effort. But I am getting 1,800 calories a day! I know that may not sound like a big deal but it is huge! Yep, that's me filling up my formula bag while standing on line for a Passenger concert in the middle of Central Park. I don't talk about calories on here to often, but I will try to put things in perspective. So most food labels go on the assumption an average person should eat 2,000 calories a day. According to the CHOP RD (registered dietitian)  I personally a supposed to get 1,800. When I was first diagnosed with Celiac I had a feeling I was not getting enough, I just had no appetite. When I went to see the campus RD she had me keep a food journal for a few weeks. I was getting 1,000-1,400 calories a day ...

Two blog post in one week, what is this craziness? I thought since my joints are why I started this blog I should give an update. It's funny how this past month I have been sicker than I have ever been. I even spent a week in the hospital and added the possibility of a new diagnosis. I can not tell you the last time I ran but I am pretty sure it was the week I got home from school, like two months ago. I had actually been running about tree times a week for a while (thats something I certainly never thought I would say). Between not getting even half my caloric needs and increasing dizzy spells I am pretty sure running and any form of cardio would only lead to me fainting. I am getting side track but I will circle back around I promise! So where I last left off I believe was off Sulfasalazine to see if that would help my stomach, but it didn't. I was off is for about a month. Shortly after starting it again my joints flared (including my neck to add in a new one). I called ...