Life with a Flare

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 ...

When I left you (a long time ago, I really need to blog more) I was getting by, just barely but still. Since then things have gone down hill and fast. About a little more than a month ago the Eythromycin I was taking for my gastroparesis stopped working. The vomiting was back and it was all sorts of horrible. We upped my Periactin dose to no avail. Next we scheduled a upper GI series with small bowel follow through to double check gastroparesis was the culprit. The last ditch attempted was trying Reglan, a drug that passes through the blood brain barrier which gives it a long list of scary side effects, but it didn't help. Day 1 With my calorie intake down to 300-500 calories a day and not being able to stay hydrated my GI decided I needed to go to the ER and be admitted. So last Thursday my mom and I drove to CHOP in Philly. We got to the ER at 6pm and I was admitted around 10pm. In the ER they started an IV and gave me a bolus dose of fluids. My GI wanted to try two days of...

Look at this girl! It has been a year(plus one day) since I have had my last surgery! And there isn't any surgeries that I know of in my future! I have not had to go to PT is about 9 months! This is what I call crazy! My left hip is doing pretty great! It is stronger than it has ever been. If you had told me a year ago that less than one year post op I would run a couple miles cause I could I would have laughed in your face. I am at a place I could never imagine I would be at. I do still have active enthesitis in my left hip, so I m not yet pain free but it is a completely separate pain than FAI and/or a labral tear. My rheumy even comments how much more ROM my hip has then when I first saw her, when I was only a couple months post op. If anyone is thinking of have a hip scope for FAI or a labral tear I would definitely recommend it! It was one of the best decisions I ever made. You can barely see the 3rd scar! This side actually looks better than the right.

As you may remember a few months ago I started to run. My new year's resolution was to run a 5K or at least start training for one. It took till February to start out on that goal but I did, and I was even doing well for a while. Then that nasty infection hit right after spring break. I tried to keep running but it didn't go so well. I had to create a no running within 48 hours of vomiting rule. Yeah that is a thing. Well almost 2 months had gone by and between my schedule and regular vomiting and dehydration I hadn't been on a run. Since I had to stop taking sulfazalazine I had notice more stiffness in my joints and decided I needed to go for a run. I started to prehydrate with some Gatorade. I went about 1.25 mile and felt good. Post Run Selfie and Starbucks Two days later I had a final in the afternoon and was feeling stiff so I decided to go on another run. I had a light breakfast in anticipation and once again prehydrated. Right before I hit the 1.25 mile make ...

There is never a dull moment in my life, although I would not mind one. The latest chapter in the saga of "Joan's Body Doesn't Work" my stomach symptoms did not go away like I thought they head. As the pain and vomiting continued it was clear they had no intentions of going away so my GI ordered a gastric emptying scan. What that entailed was eating radio active eggs and then lying on an x-ray table for 2 hours (Which my joints did not appreciate) while it took pictures of my abdomen every few minutes to see how fast my stomach is digesting food. At least I got to watch MU during the scan. I find the fact I get a sticker for radiation exposure ironic. A few days later my GI called with the results, apparently my stomach is not emptying fast enough. She thinks it was caused by the infection I had and will go away in 8 weeks (even less at this point since that was a few weeks ago). She prescribed a medication called erythromycin which I take about 15 minutes...

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...

It is hard to believe that I had a major hip surgery a year ago. Recently I have been reading some of the post I wrote leading up to the surgery and right after. It amazes me how far I have come. The past year has been such a roller coaster for me, there was a point where I felt like I was just doomed to be on crutches forever. This week I ran a mile. That's right I actually RAN! I really never thought I would be at this point. The first week after surgery was probably the hardest week of my life. Quite frankly I don't even remember what my hip felt like that first week, but my head as pounding. The spinal headache I had made me think I was going to die. There was one point when I just cried for a half hour because I couldn't even lift my head without getting dizzy and nauseous but I couldn't fall asleep because I was on caffeine pills. Thankfully it subsided without needed another spinal procedure (I might have flipped as I am now very afraid of needles anywhere ne...

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...