The Joints are Doing Great (Cause Something Has to Be)!

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 my Rheumy and she decided to do a trial of steroids to see if the pain was Enthesitis or AMPS. So I did a 12 day burst of prednisone and it was amazing. As I dwindled my dose down the pain crept back up on me. My Rheumy ordered an MRI of my left knee to see if there was inflammation, but it kept getting pushed off in favor of my pressing GI issues.

A month after the prednisone burst (and about two months after restarting sulfasalazine) was when I was in the hospital and noticed I had no joint pain. Ironically this is also when I finally managed to get an MRI done. Mind you I have not ran in months so I really have to chalk this all up to sulfasalazine! My joints feel better than they have in my memory, probably since I was ten. I really never thought I would be at this point. I am excited for my next rheumatology appointment and not because I am in so much pain that I want a change in treatment, I am excited to let my doctor know how great I feel! I am also thinking about asking to try and wean off celebrex! (That would mean no more regular blood test!!!)
Top is my knees last summer and the bottom is my knees now!

8 Days at CHOP

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 IV fluids and meds to see if that helped at all.

Day 2

Friday morning I was the first room the doctors rounded on. At CHOP they do rounds in the hallway, so I got out of bed and with my IV pole and all I went to stand at the door way. As my resident went over my long medical history I started to feel light headed and before I knew it I had fainted. Leave it to me to faint while 10-15 doctors are focused on me. At least I got a fast response from the doctors, My maintenance fluids were upped to 1.5x the normal dose. When my GI came in that afternoon she mentioned the possibility of me having  Postural Orthostatic Tachycardia Syndrome (POTS). (note: I have been having bouts of lightheaded/dizziness since December but this was the first time I fainted)
Keeping Busy on Friday

Day 3

Since I had been hooked up to IV fluids for 48 hours and was still only able to manage a few bites of food at a time it was decided I needed a feeding tube. We wanted to do a NJ tube (which goes through your nose and into your small intestines by passing the stomach), but it has to be place by interventional radiology and they are closed of the weekends so we decided to try a NG tube (which goes through your nose into your stomach) first since if by off chance I could tolerate it, it would be better in the long run since I would be able to take it in and out myself. The nurse who put the NG tube in was really awesome and had one herself when she was 13-18 because of crohns.
NG Tube is in...

I also went to the teen room and met another girl who is two years younger than me who also has gastroparesis and possibly POTS, although her POTS symptoms are a lot worse than mine.

Board Games in Hospitals Bio-hazard Bags and All
Day 4

On Sunday I woke up with pain and bloating in my stomach due to the NG tube feeds. On a better note I went with my new friend to the hospital library and we borrowed Lizzie McGuire to watch!
30oz Starbucks! POTS Sized!

Day 5

Monday I was hoping to get my NJ tube but IR could not fit me in till Tuesday. We did stop the NG feeds and I attempted to eat a couple bites here and there. Child life tried to keep me busy all day. I went to a duct tape craft activity and met some younger kids who were also on the GI floor, including a 9 year old boy and his mom who were down the hall from me and were admitted the day after I was and hopefully discharged the day after me as well. That night a friend of mine from Temple came to visit as well and it was nice to see someone I knew from the outside world who was not my mom.

Day 6

Finally I got my NJ tube! It took a little longer than expected. Three hours had past till I was awake again and I had thought I would be out for less than an hour since it was supposed to be shorted than an endoscopy. I also got a knee MRI which was ordered like forever ago but I first tried to fit it in with my work schedule than I needed GI test which took priority (My joints actually aren't bothering me right now but that's a whole post on to itself). Since the MRI was in the Wood's building(its where all the out patient clinics are) at 7 pm every thing was so quite and eerie like we weren't supposed to be there. Although oddly enough the TVs were still on.

Day 7

Although the girl I had befriended earlier in the week was discharged, I made a new friend, Anna, in the teen lounge who not only also had Gastroparesis (and an NJ tube), and possibly POTS (I guess no one has an actual diagnosis), but also AMPS, which is insane (she also has to make an appointment with a Rheumatologist for an eval, can someone say medical soulmates?). We hung out and sharpied her KT tape (my favorite kinesiology accessory, yes I have one and a favorite NSAID too). And to top off the day my best friend from Temple visited me! We totally broke visiting hours cause we are rebels like that...shhh....don't tell!
KT Tape + Sharpies

Day 8

I was hoping to get discharged bright and early but I was told I couldn't be till everything I needed at home was set up and my insurance was being difficult. So I kinda hung out all day. I ventured to the sea garden because a group from a committee I am on for HootaThon was supposed to be there but not enough people could come although I didn't receive the text till I was there already but it was nice to get some fresh air. In the afternoon I was hanging out with Anna and we went down stairs in front of Seacrest Studios and before we knew it we found our selves appearing on CHOP's in house channel, Galaxy 51. Finally at 7:45 I found out I was being discharged!
Tube Twins!