Skip to main content

I Am Still Me

In the past two years it seems like my medical issues have become part of my identity. I am the girl always on crutches or limping, the one who doesn't participate in gym. No one asks where I am if I am not it class, they know I was probably at a doctor's appointment or if I come in a period or two late my friends know my shoulders are probably having a bad day so I had to take a bath to get rid of morning stiffness. I am not sure when it happened but people are now more surprised when I can walk then when I can't. 

Sometimes it is really hard for me to move past the medical parts of my life, because it does affect all the others, but it is important that I do. I try to do everything I used to do, which is hard but aside from athletic activities I have done a pretty good job managing. I can't always do everything I want to but I prioritize. 

There are a couple things I refuse to let my health affect. Debate is something I don't let get affected, since I have to commit in advance to a partner and I hate breaking commitments I have managed to go to every single debate I signed up for (even though there were a few I just knew I couldn't handle). Another facet of my life I have not allowed to change it my job. I work at an after school childcare elementary school and while it can be taxing I love it, and I know if there is a sub it affects the students, and I can't bare to do that.
My Best Friend/Debate Partner(right) and Me(left) at State Debate Finals

There are two things that really help me, hope and perspective. (and music never hurts!)

Hope is something I refuse to lose. I have kept it for this long and I am finally seeing progress in my treatment. Voltaren seems to be the answer to my prayers because I have been more pain-free this weekend then it the years before. After all if you do hit rock bottom that only means the only place you can go is up.

Perspective is so important. A year ago today I was on the March of the Living. A year ago today I walked out of Auschwitz, that is am amazing statement. I will never forget that, it will always help me look at life in a more positive manner. I walked out of the place my great-grandparents died because of there religion.

Walking out of Auschwitz


  1. Hi Joan, I found your site through RAwarrior's post. You have incredible advice for all of us! If it's okay with you, I'd like to add your site to my blogroll. Let me know. Keep up that great spirit!

    All the best,

  2. I am glad you like my blog, I would be honored to be on your blogroll. Can't wait to check your blog out, I really like the name!

  3. Great, I added you! :)


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.

I was left with the advise to call me rheumy Monda…

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. This is th…

Feeding Tube Awareness Week Day 1

Today is the beginning of feeding tube awareness week! A year ago if you had told me I would be feeding tube dependent in less than 6 months I would be feeding tube dependent I would say that's crazy. Anyways here I am and its not super scary like one might think.

Day 1: Talk about the reasons you, your child, or your loved one is tube fed. Raise awareness of the medical conditions that made tube feeding necessary.
I am tube fed because I have gastroparesis and dysautonomia.
Gastroparesis: Delayed stomach emptying, which means I can not tolerate normal amounts of food because it doesn't leave my stomach as fast as it should. The symptoms include feeling full, nausea, and vomiting (there are many others, these are just the ones I deal with the most). Gastroparesis is caused by nerves not firing and telling the stomach to empty. Due to gastroparesis I can only consume a few hundred calories a day so I receive most of them through my tube that goes into my small intestines instead…