Life with a Flare

My Lungs Got a Close Up and I Got to Choose the Gown Color Every semester I seem to be muddling through at the end. In fact this trend pre-dates my college career. December of senior year I was diagnosed with Uveitis. Two days after graduation I had hip surgery, meaning the two weeks before that I was medication less, not pretty. Then in college I was diagnosed with Celiac about 5 days before my first set of finals. Spring of last year the week before finals was when erythromycin stopped working and my downward spiral towards the feeding tube began. This past fall semester my POTS was so bad during finals I thought I was going to pass out during my math final, I lasted until 2 hours after it. In the ER I found out I at least got a 90% on the final and the doctor high fived me.  So in true Joan fashion something had to go wrong in the past two weeks of my life and sure enough something did. Unlike in the past I was much more blindsided by it. With past finals weeks the healt...

Certain conversations will forever be ingrained in my memory, one of them is the conversation that I had with my GI on July 9th. After erythromycin had stopped working we were scrambling to get my symptoms under controlled. Reglan another gastroparesis med (that had many scary side effects) failed to work for me and we had maxed out my dose of Periactin. I was only getting in about 300 calories a day and feeling it. To add to the mess I started not tolerating ensure. And trust me after throwing up ensure you will never want to touch it again. After increasing my dose of Periactin we gave it a few days to kick in but by July 9th I had to call and after explaining where I was at with the nurse I received a call back from my GI within an hour or two. Whenever a doctor calls you back that fast it is not a good sign (although in all fairness my GI does usually call my back in 24 hours). She asked how I was and I as always replied "okay." "Well it does not you are doin...

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 ...

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...

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...