Skip to main content

About Me!

I am 18 years old and a college sophomore at Temple University studying Early Childhood Education and hoping to get into an accelerate program to get my masters in Special Education as well. I have two part time jobs in addition to being a full time student. I am a 2nd grade Hebrew School teacher and I babysit/nanny for the two most adorable kids ever. I love both my jobs to death!

I loved ballet, hiking, cheer-leading, and most of all horseback riding once upon a time.

I also live with chronic illness. I have a plethora of diagnoses: Enthesitis, Amplified Musculoskeletal Pain Syndrome/Regional Sympathetic Dystrophy (AMPS/RSD), Celiac, Gastroparesis, and possibly Postural Orthostatic Tachycardia Syndrome (POTS). Also those diagnoses do not include resolved orthopedic problems. Sometimes they complicate my life just a bit...

I had knee pain from age 10 but the middle of Freshman year my left knee got worse. I did some physical therapy. In February of my sophomore year I noticed my knee could no longer lock in full extension, it started to straighten less and less (back to PT), by August I could no longer walk. By this point I had already had two MRIs on my knee a year a part and a bunch of x-rays. Since conservative treatment wasn't working a knee scope was discussed, but first I had a cortisone injection to make sure that surgery could help. Within two days of the injection I was off crutches, and six days afterwards I danced for almost two hours at my school's homecoming dance.

Surgery was scheduled for November 8th, 2011. During the surgery it was found the fat pad (yeah until this surgery I had no idea what that was either) was preventing my knee from straightening  I was told from early on that due to how long the problem was going on I would have a harder recovery than most. My knee kept improving until about January when it plateaued.

In March it started going downhill again, and in April my left knee decided to join in on the fun. I was actually in Poland when my left knee decided to start giving me problem.

In September of my senior year of high school I went to seek a 3rd opinion for my knees, I mentioned some hip pain and before I knew it I was getting hip MRIs as well as a knee. FAI (hip impingement) and a labral tear was found in my left hip then we discovered my right one was even worse. At this point I needed to hip surgeries but the orthopedist did not want to touch me till I saw a pediatric rheumatologist and that is when the real fun began.

 It took two months to get an appointment, and a week before the appointment a few of my fingers swelled up. The Rheumy ordered a bunch of blood test to rule things out, and since Juvenile Rheumatoid Arthritis was on the table I was then sent to an eye doctor. The eye doctor was just a precaution since JRA could cause inflammation in the eye also known as Uveitis, but no one thought I had it. Well I did. However it did not last long so even though we were working under the assumption I had sometime of autoimmune arthritis no one gave me an official diagnosis.

When I started school in Philly I decided it was time to see a new rheumatologist so I saw one at The Children's Hospital of Philadelphia (CHOP). At my first appointment I have diagnosed with Enthesitis (the autoimmune arthritis) and AMPS/RSD.

Soon after that I saw a GI doctor at CHOP as well because of stomach pain and vomiting. After an endoscopy we discovered I have Celiac and I started a gluten free diet on December 5, 2013 (the week before finals). I also started to get dizzy spells.

April all my stomach issues came back with a vengeance. A serving of radioactive eggs later I was diagnosed with delayed gastric emptying or in other words Gastroparesis. Right now it is pretty severe and I rely on an NJ tube for nutrition. And just to keep things interesting I fainted during rounds when I was in the hospital because of the the whole feeding tube debacle, so that is where the possible POTS comes from.

So yeah I am just your average college sophomore...

Comments

  1. joan, you are a very skilled writer. I will keep up with the all exciting life and times of Joan Fanwick. Since you seem like an incredibly successful and goal oriented person, I was curious what you think: Which came first the chicken or the egg?

    ReplyDelete

Post a Comment

Popular posts from this blog

The Swollen Wrist

This morning I woke up to a red painful swollen wrist. My right wrist was not happy or useable for the better part of the morning. Of course my mom wanted to make a rheumatologist appointment for this week but I really did not think it is worth it. Since I am now in the 2 week period before my hip surgery I can not take anything but Tylenol anyway (no voltaren or fancy cream), so there is not a whole lot that can be done. We finally settled on me going to my GP (for the 2nd time in one week as I had a pre-op appointment with him on Monday), and I took a picture so I can show my rheumy at my next appointment. I managed to get an appointment at 11AM because my GP was in the office this Saturday. By the time of the appointment my wrist looked pretty normal, although I had the picture so he could see something was up. He had it x-rayed just to rule out any issues non rheumatology related, and as we both guessed the x-rays came out normal. My Lovely Wrist this Morning I was left wit

Spring Break!

Ok so my spring break may not of been the most exciting, as I think I spent more time at PT then anywhere else, but it was nice not to spend the entire time in bed because of pain. In fact my heat pad only came out like once, what is this craziness? PT has been going great since I stopped flaring! As of Wednesday I am doing every exercise I had to stop because of my knees during the flare, plus new exercise. I am finally done doing pillow squeezes and glute sets, I now have very few table exercises. As of next week I am down to only two PT appoints a week instead of three, which means I won't have to go before school anymore! I did do something besides PT this week, I went prom dress shopping! I found a gorgeous blue and white open back gown. I am not going to post a picture until after prom but I love it. It fit perfectly but if I gain an ounce it will be an issue or if my hips choose to swell prom night. I also have amazing shoe, they are silver stilettos and over 3 inches ta

Preparing to Fly with Complex Medical Issues

One of the most stressful things to do is travelling, now add some needles, medical liquids, and a suppressed immune system to that and flying goes from stressful to down right scary. As I prepare to fly to the rare patient advocacy summit taking place this week in California I  figured I would share what I have found works the best for me when traveling. Before my first flight with a feeding tube I looked up the TSA policies on medical liquids. Basically as long as you notify them while going through security and separate them from the rest of your things you should be allowed to take them through without issue. No doctor's note required. Same goes for needles and syringes and inject-able medications. You may want to print this policy out or have easy access to it on your phone in case you encounter any issues although I have yet to have a problem. A few days before your flight call up TSA cares. They will set you up with a TSA specialist to help you through security. Th