Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Posts Tagged ‘POTS’

Ehlers Danlos in South Bend

Written by Katie. Posted in Ehlers-Danlos Appointments

After seeing Dr. Cantieri, we headed to South Bend.


My next appointment was with Dr. Lavallee, who is a sports medicine doctor, who also specializes in Ehlers Danlos.  He actually has Ehlers Danlos; the classical type, meaning it affects his skin and he also has the extreme joint hypermobility.  I had no idea what to expect from this appointment, except I was pretty excited to talk to a doctor who actually lives with what I am living with.

Physical Therapy Week Two

Written by Katie. Posted in Physical Therapy

This week I feel I like I finally hit my stride with physical therapy.  I felt like I was an actual athlete again for a moment.  That feeling is a high, let me tell you.

This time around, it is comforting that there is a plan in place.  It is comforting that we actually know what is wrong. 

In my first round of PT from July to October, I would go to each session and we would try so many different things, not understanding why I was getting so sick with standing up exercises, and why it felt like my body just kept breaking down and falling apart no matter what I did.  I was living in a fear-gripped bubble at each session, as I was being tested for MS, ALS, other neuromuscular diseases, nutrition deficiencies, vasculitis, etc (throughout the same time frame of these therapy sessions)…

Gyno and EDS

Written by Katie. Posted in Ehlers-Danlos Appointments

Today I spent quite a while talking to my gynecologist.  I know it may be weird to some but I love my gynecologist.  He is in my top three doctors for the most kind, caring doctors I’ve ever seen (and as you know, I’ve seen a lot 😉

I made an appointment to see him after I returned from seeing Dr. Tinkle in Cincinnati.  One of Dr. Tinkle’s recommendations was to get on a second generation Progesterone birth control to see if it helps regulate my hormones and provides me with better joint stability.

Breathe In, Breathe Out

Written by Katie. Posted in Challenges

WARNING:  What you are about to read is not full of positivity.   

 I promised the good, the bad, and the ugly, and today is just one of those days where I hope getting it out in writing will give me a dose of therapy I need.

Overwhelmed. With. Life.  That pretty much sums it for me.  I hit a wall yesterday and Brad ordered me to bedrest today.  I think I experienced yesterday what Dr. Tinkle was talking about when he said Type A people usually struggle the most.