Life with a Flare

At the end of every year I look back on the year and choose a song that was my anthem. This year although cliche Fight Song by Rachel Platten is the most fitting. I look at the last year and realize even though I encountered some health obstacles from lung issues following a cold to a joint flare that hit me off guard, overall my health was pretty stable and I had a lot less ER trips and hospital admissions which must mean something. Some milestones for this year including my first pulmonary function test, trying and failing a biologic, and having my port placed. Some non medical mile stones include my first trip to the shore with the family I nanny for, surviving two more semesters of college, signing my first lease, getting in to an accelerated master's program, and going on two school paid for trips to Florida including my first professional conference and a college football bowl game. I have fought a lot to get to where I am now but I am only holding on by a thread. I am ...

As I mentioned in a previous update, a couple month ago my joints started flaring badly. This is definitively on of the worse flares I have ever been in if not the worst. After a burst of prednisone did not stop it (well it helped till I weaned off of it) I went to see my rheumatologist. At the appointment after describing my symptoms she mention Enbrel but wanted to do a physical exam first. If there was obvious signs of inflammation on the exam she would prescribe the medication but if not she was going to send me for an MRI to look for inflammation first. Well by the end of the exam there was no question my joints were not in good shape, Enbrel was prescribed. We wrapped up the appointment by adding back in some lower dose Prednisone as well. Then the nurse came in to teach me how to do the Enbrel injections, super fun. Overall doing the injections is actually relatively simple. Compared to an Infusion the Enbrel Supplies are Pretty Simple  Now to get down to the...

Remember that time when I used to blog? Well I am going to attempt to do that again. Lots has happened since my last post and I am not sure how to fit it all in but I will do my best to try. On the POTS/IV fluid front I finally got a port! This was very exciting since it was taking multiple tries to get IVs in me more often than not. I am also able to get IV fluids 3 times a week at home now and if I need an extra one I can do it myself with no ER needed. The port probably deserves it's own post, but in short I love it. My Port is a Pretty Purple! Unfortunately after over a year of pretty calm joints a cold triggered a major flare. My joints are currently worse than they have been since high school. My rheumy was hoping a burst of Prednisone would calm everything down, and it did till I stopped taking it. So her office managed to fit me in for yesterday and she put me back on Prednisone and prescribed Enbrel. Enbrel in a biologic medicine that is taken by injection once a...

Dear Senior Year Gym Teacher, We only met briefly on the first day of the semester, then for the next third of it the seniors went to health class during the gym period. Our next encounter was at a meeting with my parents and all my other teachers as well as an administrator about my upcoming absences due to a hip surgery. You were annoyed to be there clearly. Well I was annoyed to be missing part of my senior year due to surgery but if your attitude stopped there I would have been okay. After the seniors came back from health you asked anyone who had a doctor's note to come speak to you. I was very proud to walk over without the assistance of crutches for the first time in five weeks, a whole week sooner than predicted. The nurse had already emailed you informing you of my inability to participate in class. You asked me if I exercised outside of class, apparently you were unimpressed with my new found ability to walk. "Yes," I responded with a smile, "I go to ph...

In the past couple months of my life I have felt like I have been trying so to get my health in order but the harder I try the worse it goes. At my last rheumatologist appointment about 2 months ago between my knee pain and lost ROM in my left hip we decided maybe it was time to try PT again. I was ready to hit these problems head on. Prepared to make PT work. It HAD to work. The other options weren't pretty. If it didn't I would probably be sent for a knee ultrasound (that isn't the bad part, and then either Prednisone (a.k.a. Satin's Tic-Tacs) or even worse sent back to ortho. Last time I saw my ortho he told me to come back when I was ready for knee surgery. I went to my PT evaluation hopeful. I soon found out my PT also had a hip scope for FAI. Everything seemed to be going well. I made a lovely sticker chart to keep track of ding my home exercises everyday. It had glitter! And owl stickers to go on it! What more do I need to keep me on track? My second...

Being chronically ill in college comes with many obstacles. One of the hardest ones is avoiding normal people illness. Being an education major makes this even harder. I spend lots of time in elementary schools and so do most of my friends do as well. It is safe to say there is always something going around our classes. On top of that no one ever wants to miss a class especially since we are on a Tuesday/Thursday schedule to accommodate our field placements (which I totally get because I hate having to catch up what I miss). This leads to my classmates coming in to class sick all the time. Once one of our professor even came in and told us she had a low grade fever. For me this is really scary. Let me give you a little history of what has happened to me when I have gotten normal people sich since being chronically ill. In high school one I had a small cold or bug that was only bad for a couple days but then triggered a had joint flare, forcing me to miss multiple days of school (no m...

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 ...

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 ...

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...

I had a plan for this semester, I was  going to do well in all my classes and actually manage to get to all of them. This year would not be a repeat of senior year where I missed more school than possibly all the other years of my life combined. Yet I am just making it under the limit for allowed absences in most of my classes and I have had to get extensions on assignments. Thankfully all my professors have been very understanding. I think maybe I should have gone to disabilities services to get accommodations, but as my rheumatologist wanted me to be I was determined to make it to class even while flaring. I did just that, I even went when I had a normal person cold! So had did I get to this point, where I am hanging on by a thread? Chronic illness doesn't allow for one to plan ahead, even when determined. I generally have two rules when it comes to missing class, I have to be in the hospital or unable to walk, sometimes both. So between a few last minute doctor appointments an...

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 have been so bad about updating this blog! Mobic did not go well, I only last about two weeks on it, then I switched to Celebrex. Celebrex is supposed to be the easiest on the stomach of all NSAIDs, well cause I am me that is not how it worked out. About a week or two into taking Celebrex my stomach pain got a lot worse, I actually thought I had an ulcer. It was not fun at all. So I went to student health services and had to see a nurse before I could get a doctor's appointment. Right away it was agreed on I needed to see a doctor as soon as possible, but the next available appointment was not till the next day. When I did see the doctor he was really great and prescribed Protonix to replace Prevacid, but did say if I have anymore stomach issues I need to see a GI specialist which I would like to avoid. He also confirmed that it was probably gastritis and not an ulcer but went over all the signs to look for. The doctor also said he would try to do some reading on NSAID induce...

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...