New Blog

Hey Guys,

So I have decided to move on from this blog.  When I started blogging here I intended to be devoted to blogging about my experiences as a dancer with Rheumatoid Arthritis; however this space became and afterthought as you could probably tell by the spaced out blog posts.

So I’ve now created a space that I can talk about my life as a college student, dancer, woman, and my experiences with Rheumatoid Arthritis.  I hope you will take a trip on over to look at my new space on the internet.

-Jill

musingsramblingsexperiences.wordpress.com

Posted in Uncategorized | Leave a comment

Hi

So I know it has been a while. Life has been a little crazy.

The last month of summer I tried to spend as much time as possible with my family and my boyfriend before I headed back to school so that is one reason why I have been so busy. Another reason is that since I have gotten to school, I have been extremely homesick, as in I’ve cried every day except one since I’ve been here homesick.

So that is what is up in a nutshell…

Hopefully I’ll be back soon but school is starting soon so I can’t really promise much.

Thanks for the love and support.

Jillbean

Posted in Uncategorized | 2 Comments

This day…

Today I woke up at 4:30am to the most awful feeling.

All of my joints minus my jaw it seemed like were screaming at me and wouldn’t stop. I kept on trying to go back to sleep but when my alarm went off at 6 to get up for work, I just went to the bathroom and filled up the tub with the hottest water possible. After 45 minutes of hoping the bath would help I got up, attempted to get ready by hobbling back and forth between my bed an my closet trying to get dressed for work and do my best attempt at makeup with swollen hands. By the time I got downstairs to eat breakfast it was 7:20 and I was still feeling like absolute shit. I hadn’t felt that bad since my last crazy flare up where I had to miss class.
I realized soon when it was 7:45 and I was eating my cereal at a snails pace because my whole body hurt so bad that there was no way that I could drive the 45 minutes to work and then teach for the next hour and a half. I didn’t even think I could turn the ignition in my car. So I called into work and told my boss about my RA and that it had flared up to the point where I couldn’t teach any of my classes in the morning and afternoon. It was a scramble to get my classes covered but luckily everything worked itself out.
This is the first really bad flare that I had been in town for, so I let my boyfriend know how bad it was and he came over and kept me company while I was couch bound for most of the day, watching movies like Bruce Almighty and eating some good food.
I’m really glad that he was here and that he could finally see first hand what that experience is like. He also saw how I had to demon dial my rheumatologist’s office to get an answer back on what they could do for me.

I first called their main office, told the medical staff member what was going on, she only asked for my name and date of birth and told me that the doctor would call me back. Three hours later I called the location that I had been to two weeks earlier, spoke to a staff member. She asked for my name, date of birth, diagnosis, symptom history, and what I had tried already. She also saw that I hadn’t heard back on my blood results yet and told me that she would get the doctor to tell me what was up with those.
She called me back about an hour later telling me that the doctor said that my blood tests were fine but he didn’t really give a straight answer on what to do next with my pain level and that she “wasn’t really happy with his response” so she sent him another message. 15 minutes later I got a call back that they want to double my daily prednisone from 5 to 10mg a day for the next 3 days and then drop it back down to 5 until my next appointment on the 2nd.

So hopefully this prednisone works because I hated missing out on teaching my kiddos today and I don’t want to do that to another group tomorrow. And also the pain sucks ass too.

Posted in Uncategorized | Tagged , , , , , , , | Leave a comment

I’m impatient

So it’s been almost two weeks on Imuran and so far it has not helped my pain level at all…

These past two days it seems that 100% of the time my joints are either swollen or in blinding pain. And I know that it takes 4-6 weeks for DMARDs to kick in but I’m a little impatient at the moment and just want it to kick in now.

But my next rheumatology appointment is July 2nd, so hopefully by then i will be feeling much better or I will be on to the next drug

Posted in Uncategorized | Tagged , , , | 2 Comments

New RA drugs for me

So has anyone out there been on Azathioprine (Imuran) before? I just started this medication a little under a week ago and so far I have been tolerating it well. Way less side effects than Methotrexate (nausea being the main one for me) and it is a once a day pill so for me, that means it is less likely for me to forget to take it.

I’m wondering why this wasn’t a first round option that was brought up with my previous rheumatologist? Maybe it isn’t used in kids for many reasons that I don’t know about or maybe it doesn’t work in as many people as methotrexate but at least for right now, I like it a lot more than MTX.

Also has anyone ever been on Leflunomide before? That was another option for me but there are many risks such as birth defects if I were to ever get pregnant and also the fact that it can remain in your system up to two years after you are done with it. It is my second option if the Azathioprine doesn’t work, but I have to wait until my next appointment in July to see how Azathioprine is working…

Thanks!

Posted in Uncategorized | Tagged , , , , , | Leave a comment

Rheumatology appointment

So my first appointment with my new rheumy went great!

He is one of the first doctors I’ve ever been to that read up on the medications I was currently taking and all of that other junk that takes 30 minutes to fill out before he came in the room to see me.

We talked a lot about my history with RA: all of the fun stuff like the medications I’ve failed, when I was diagnosed, what joints hurt the most, etc. But it looks like I am going to switch from Methotrexate to a new medication (I’ll have to look it up to tell you, it was a knew one for me to hear) and seeing how my body deals with that and how my RA responds will be the basis on what kind of biologic I will try next but that will be revisited in a month along with lots of blood work that I have to get done before then and x-rays I had done today.

But overall I am very happy with my first appointment and am glad I found a great new rheumatologist!

Posted in Uncategorized | Tagged , , , , , | 2 Comments

NYCB Sleeping Beauty Pas de Deux

I found this great video showing what is going through a dancer’s mind during a Pas de Deux. It is between two New York City Ballet dancers dancing the wedding pas de deux in the ballet Sleeping Beauty.

Enjoy!

NYCB Sleeping Beauty Pas de Deux

Posted in Uncategorized | Tagged , , , , , , | Leave a comment