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

POTS in Art?

Written by Katie. Posted in POTS Appointments, POTS Awareness

"The Doctor and his Patient" by Jan Steen

I found it!  Ever since I saw Dr. Grubb last April, I have been searching for this painting.  Dr. Grubb had showed me this painting to illustrate how he believes this patient could be a patient with EDS type 3 and POTS.  This painting is from the Dutch realism period, and was painted by Jan Steen in the 1600’s.  The Dutch Realism period was a period when artists began to paint real life…even sick people. 

POTS in Toledo Round 2

Written by Katie. Posted in POTS Appointments

Last Monday, Brad and I traveled to Toledo to see the infamous Dr. Grubb.  When I was first diagnosed with POTS, I researched Dysautonomia like crazy.  Dr. Grubb’s name kept coming up over and over again.  From there, I read many of his research papers about POTS and other types of Dysautonomia. 

I made it my mission to see him after I was diagnosed, so I called his office back in November, and the very nice nurse explained that I would have to wait more than a year for an appointment.  However, she explained that I could see the NP, Beverly, in about 4-6 months.  I told her I was totally fine with that.  Therefore, at the beginning of December I faxed the office all of my test results and diagnosis paperwork.  In March, I was called to set up my first appointment with Bev for April.  On April 20th, I saw Bev for the first time. 

POTS in Toledo

Written by Katie. Posted in POTS Appointments

 

April 20th was finally the day I had been waiting for!  Brad and I went to Toledo for my POTS appointment with Dr. Grubb’s nurse practitioner, Beverly.  When I was diagnosed back in November, I researched, and researched, and researched POTS like it was my job.  I would say that 90% of what I found about POTS was either written by Dr. Grubb (an electrophysiologist), was written by a team of doctors including Dr. Grubb and Beverly, or included quotes from Dr. Grubb.
When I went to see Dr. Tinkle in Cincinnati for EDS, Dr. Tinkle told me I needed to get in to see Dr. Grubb because he has such a strong understanding of not only, Dysautonomia, but also how POTS and EDS play into each other.  However, I was warned that it takes quite some time to get into him because people all over the country travel to see him. 

POTS in South Bend

Written by Katie. Posted in POTS Appointments

We spent so much time in Dr. Lavallee’s office, so we had to race to my third appointment a couple blocks over with Dr. Halleran, a cardio electrophysiologist.  Dr. Lavallee referred me to him for POTS. 

My appointment started with an Echo (which must have been fine because they didn’t say anything about it).

Dr. Halleran came in and listened to my history and my symptoms.  He explained a lot about POTS and that he actually does not like the name POTS because this disorder has to do with a lot more than just tachycardia. 

Finally

Written by Katie. Posted in POTS Appointments

After 11 long months, I have my first answer.  I went to Cleveland yesterday to get the results from my autonomic nervous system testing.  I went into the appointment with low expectations, most of all to protect myself.  I had been through so many other appointments to only find myself frustrated and disappointed when I was told that the test results did not show anything.  The doctors would tell me to celebrate the negative results but honestly this was hard when I still knew something was really wrong, and I didn’t know what it was.  I would leave many specialist’s office feeling like a crazy person when I was told my tests were normal, or that they came back “beautiful,” while I was still having crazy symptoms that made me sick.

EDS Tweets

Twitter response: "Invalid or expired token."

POTS Tweets

Twitter response: "Invalid or expired token."