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...

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...

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 ...

No one will ever be harder on yourself than you are. When I was diagnosed with AMPS a couple months ago I was told I needed to push through the pain. This idea was reaffirmed when I went to see the PT and OT at CHOP. This is what I have been doing. I have not missed a single class because of my health yet this year. Besides for when the Mobic did not work I have not gotten to the point where I have called my Rheumy. I have not missed a commitment or scheduled event. I am proud of all these things but at some point the pain started getting even worse this week, something had to give. I did everything I normally do plus put some of the anti-inflammatory fancy cream on a few joints. It is homecoming weekend, I was going to push pass this flare, I had to push passed it. Two weeks ago I had decided I was going to go out this weekend, yet here I am writing this blog post instead (not that I don't enjoy blogging but...). The past couple of mornings haven't been pretty. I have ha...

I am doing this post for invisible illness week which is this week.  1. The illness I live with is: Enthesitis, Amplified Musculoskeletal Pain(AMP), and Uveitis 2. I was diagnosed with it in the year: Uveitis-2012, Enthesitis and AMP-2013 3. But I had symptoms since: 2006 4. The biggest adjustment I’ve had to make is: I have had to learn I can't do everything I want or everything that other people my age are doing. 5. Most people assume: I am perfectly fine or I just have osteoarthritis and not an autoimmune disease. 6. The hardest part about mornings are: Getting out of bed, doing my hair, and figuring out what outfit will be the most comfortable for the day (and accommodate any swelling I may have) 7. My favorite medical TV show is: Grey's Anatomy (and Scrubs even if it is no longer on) 8. A gadget I couldn’t live without is: My Freezer 9. The hardest part about nights are: Not being able to fall asleep in a comfortable pos...

Okay guys I have been meaning to post this update but I have had no time to write it. Last week I had an appointment with a new pediatric rheumatologist , usually it is a long wait to see one but there was a cancellation so I got in really fast. During the appointment I was diagnosed with two things. The first is Enthesitis, with is an autoimmune disease were the the things that attach ligaments and tendons to the bones in joints become inflamed, it can also cause Uveitis. The first line of treatment is NSAIDs like like Voltaren but I had to switch to Mobic because I was having a lot of GI issues, so the new one will hopefully have less side effects. At this point we a re sticking to NSAIDs because it is hard to tell how severe the disease is because of the 2nd condition I have. The second thing is Amplified Musculoskeletal Pain, this is a nerve condition that is a result of the fact I have had untreated chronic pain for so long. Basicly my nerves no longer know how to turn off pain si...