Stumbling Blocks...

As I previously state PT has been a struggle. It's been almost 2 months since I started and I haven't gotten very but at my PT pointed out today was only my 5 visit and at least 2 of them where washes due to other health issues.

I did have to call my Rheumy's office since I was supposed to call a month in...oops. She decided I need to have joint ultrasounds, which I got done today. If they don't show anything I am being sent to MRI, but I am not sure for which joints because having 4 MRIs doesn't sound right. Either way I do not want MRIs, my joints have been through a lot so there is a good chance they might show something but will it show the actual source of the issues? Definitely going to be pushing spending more time in PT.

Today in PT I was informed that my left glute is not firing. I shouldn't be surprised, this happened to my quad after my knee surgery, but that was only 2 weeks later, not almost 2 years. So basically most of my current joint problems will probably probably improve with activating my glute. I know from past experience this will take work but it is really best case scenario. PT I can handle, I have handled.

Although part of me is upset. After the disastrous recovery I had with my knee I was pleasantly surprised will how well my hips handled surgery and had few complications, I guess it was too good to be true.

An Open Letter To My High School Gym Teacher

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 physical therapy 3 times a week." After all what else were you expecting me to say?

It became clear you disliked me, maybe you thought I was only trying to get out of gym. However if you had taken a moment to know me or talk to my previous gym teacher you may have looked at me differently. Did you notice my knee braces? Did you know I had knee surgery the year before? Or I was headed to hip surgery number 2 just a couple days after graduation to avoid missing any more school? If you had just asked you may have found out I was fighting an incurable autoimmune disease that had taken years for doctors to diagnose, leaving me with multiple joint surgeries. I know you probably thought I was just a teenage girl who didn't want get sweaty in between her other classes. However you did not realize how badly I wanted to be normal and fit in. It was bad enough I stood out with my crutches and joint brace through so much of high school, I did not need a gym teacher to make me stand out even more.

I ask that in the future you do not judge your students who cannot participate in Gym because of  medical problem, even the ones who look okay, maybe even especially the ones who look okay. Treat your students with respect and kindness. Please remember that if a student is unable to participate in gym for a whole semester (or two years) they are probably facing a challenge no teenager should be.

Sincerely,
A girl who was trying her best

When I Feel Like I am Banging My Head Against the Wall



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 appointment however did not go as well. POTS was acting up, all the sudden I realized this was not going to be easy. For as much time in my life as I have spent in PT, with POTS it is a whole different ball game. From then on out things seemed to get worse at each appointment. I was only going once a week because of school plus work plus other medical stuff. My hip made a little progress but not my knees. And once my lungs started having issues all bets where off. Apparently being able to breathe really helps with PT.

So here I am, doing home exercises for the next couple weeks until my next appointment. Instead of increasing my appointments at the end of the semester we are decreasing them  because I am not physically handling PT well. I am trying so hard to push through like I have in the past but this time I am not pushing through pain, I am gasping for air and fighting with my cardio-vascular system, pushing through leads to passing out. Yet I need to find a way to keep going.

Today I had a reminder of what I was up against. I may have pushed myself too hard. I had an awards ceremony followed by volunteering for the College of Education graduation today. Which was fun but my job required me to go outside for a while, which I actually did okay during. However towards the end I was talking to my friend and the woman who was in charge of all the volunteers. I started laughing at something and before I knew it I was gasping for air, having a pre-syncope episode, and on the ground. I am pretty sure I never lost consciousness but I felt bad for the two people I was with. I think they were more freaked out than me. There I sat on the floor as I took some Midodrine for my blood pressure and albuterol to help me breath with a bag of chips. If I couldn't function in daily life how I am I supposed to conquer PT?

I know I will figure it out. I have no intentions of giving up. If I don't keep up with PT I can say goodbye to joint function so I am going to persevere. I just also need to be okay with myself if I struggle a little.

Surviving the Semester

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 health problems that have come up were not new, this go around was different though. 

Being in a kindergarten placement not so shockingly there are a lot of germs going around. In fact I am suprised with all my regular interactions with small children I have stayed pretty germ free this year. Well about two months ago all my peers in my placement got a cold, me included. Within a week or two everyone recovered without issue, except me. I continued to have a cough but it would improve throughout the day, so I didn't pay much attention. A little under a month ago it started getting worse and I was struggling to get my usual liter+ a day of fluids in, so I emailed my doctor. We decided if it did not start improving in a few days I should come in. I went in and was prescribed albuterol. All that did was make my heart rate skyrocket, the next day I was a million times worse, gasping for air. It was scary, really scary. 

Writing papers and creating unit plans in between coughing fits leaving me gasping for air was probably one of the roughest things I have been through during college yet. What was worse was during every class and final for the last two weeks all my classmates (I had every class with the same students) and professors asked if I was okay. Honestly I wasn't okay, I was struggling to breath and had multiple pre-syncope episodes, probably from the lack of oxygen. When it came down to it there was nothing they could do to help me so I did not want to worry anyone. I went to a doctor, in fact I went to see doctor's at my GP's office three times in a little over a week.
Finally in time for my last final the Flovent (steroid inhaler) started to kick in after maxing out the dose.Next week I have a follow up and will probably have to go on a lower dose but I am trying not to worry about that. I can not get in to see a pulmonologist till June(and if I waited for an attending it would have been July. So until then I am seeing an ENT and going for Pulmonary Function Test. Never a dull moment. 

On the brightside, I did not pass out during any of my finals. I handed in all my papers and unit plans. I even submitted my application to the accelerated master's program for special education today. I am done with school for the next few months, I have survived yet another semester.