Update

Published January 5, 2017 by dcsteiner

Okay, so I totally failed at writing for a while huh?

Update:

  1. Well, I know I wrote about seeing how my body would react to not being on birth control back in May. I guess it reacted the way it is supposed to because I am currently 8 months pregnant!
  2. I quit smoking! (12 years too late, but whatever it’s done)

That is really all of the “big news” I guess.

As far as being pregnant and chronically ill, I think I’ve been pretty lucky. Now don’t get me wrong, my body hurts constantly and I have more complications than the “normal healthy woman”, but I am doing okay!

My OB sent me to a high risk specialist to monitor cervical length and fetal growth more closely, which has been great because we get to see our baby girl more often! So far everything has been wonderful with her, she is perfect!

I plan to update more often, but hey, who knows. 🙂

Update

Published May 21, 2016 by dcsteiner

I know it’s been a long time since I have written anything, so I will try to update you as best as I can.

First of all, I need to find a new spine specialist because my current doctor makes me feel unbelievably worthless. I hated physical therapy and felt like it did absolutely nothing for me and he keeps wanting me to go back. They basically wanted me to work on my core strength and I can do that at home, by myself. (It’s so expensive too).

I also decided to stop taking my birth control when I am through with my current pack of pills. I feel as though I have been on them for too long and just want to give my body a break from all of the hormones. Either way, that should be an interesting journey.

On top of all of that, last week I noticed that I have something weird going on with my ankles. They kind of fold inwards? (It reminds me of when you are ice skating and they don’t fit perfect so your ankles turn in). It’s super weird. I have also noticed that I am more comfortable standing on the outside of my feet rather than on them the normal way.

I received my first ring splint as well. I wore it for a long, long time but within the recent weeks my fingers have been too swollen and it hurts. (The ring is some awful plastic).

 

I am going to try to update more often. Keeping track of everything I am going through is important to me. <3.

Hypermobile Hands

Published January 19, 2016 by dcsteiner

This is all new to me, not being normal. I thought for most of my life that other people could do the things that I can do with their bodies as well. This doesn’t necessarily bother me but as more and more differences pop up I have been getting more and more confused.

For example, today I found out that I can partially dislocate every single one of my fingers??

 

A New Diagnosis

Published January 12, 2016 by dcsteiner

It’s been a while since I’ve posted anything, but to be honest not much has happened until last week.

I finally had my geneticist appointment and they almost immediately dismissed my diagnosis of Marfan Syndrome. (GOOD NEWS) Which in turn means that I was able to quit taking my heart medication, Losartan! (BETTER NEWS)

The genetic counselor and the geneticist were very thorough and spent almost two hours with me in total.

After they were done asking me questions and checking out my joints they officially diagnosed me with Hypermobile Ehlers Danlos Syndrome. (???) I am still learning a lot about this diagnosis and really don’t have much information yet, except for the fact that I am way more flexible than the normal person. (I always thought I was normal, it was news to me that people can’t do what I can).

I also had an appointment with my primary doctor and he referred me to physical therapy. My first appointment is on January 22nd, so I will let you know how that goes!

Anyway, I hope to be more active on here in the future as things continue to move forward for me.

 

Genetic Testing

Published November 16, 2015 by dcsteiner

I know it’s been a while but there hasn’t been much development lately.

The past couple of days have been interesting to say the least. I went to a concert on Friday and found out that my body really can’t handle that kind of stuff anymore. Standing for four hours had me in excruciating pain by the time it was over. I lost another quarter of an inch in height since I went and seen the PA at the spine specialist appointment.

I also received an appointment date from Spectrum Health Genetics, January 6th at 8:15 AM.

Crossing my fingers for good news!

Update!

Published October 12, 2015 by dcsteiner

Last week I got a call from my cardiologists office saying that they had to cancel my echo. They apparently didn’t have anyone on staff that was capable of doing it that day. Either way I have a new appointment date, Oct. 27th.

Also, on Saturday I received a packet of forms to fill out for Spectrum Health Genetics. This was a surprise but I am glad that I will be able to have genetic testing done at some point.