I created this blog to share with all of you what is going
on in our life. So much of what goes on
in our daily life deals with my battle with Postural Orthostatic Tachycardia Syndrome (POTS). It would feel weird to never mention it on my
blog. However, in order to share about
where I am with my POTS now I feel I need to go back to share a little bit
about how I got here. Many of you have
been with me along this journey but others I have met since becoming sick. I thought this might be a good time to tell
my POTS story and hopefully help others struggling with POTS.
In April of 2009 I was a kindergarten teacher with energy to
spare. I was entering the end of my
fourth year of teaching. Like most
teachers in April I was beginning to get run down but I had no idea how life
was about to change forever. Initially I
came down with a bad respiratory infection.
As a kindergarten teacher I had gotten them MANY times before. It didn’t seem strange. However, this time the infection seemed worse
and the medicine the doctors gave me didn’t seem to help. Over time my actual respiratory infection
went away but new symptoms became an issue.
I was extremely fatigued. Just
getting to the bathroom seemed like running a marathon. I wasn’t eating and something was very
wrong. I ended up in the hospital where
the doctors ran tons of tests. Nothing
showed up that was physically wrong. My
heart was looking good and I just seemed to be fatigued from my infection. Or so they thought.
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Drew and I on our South Beach vacation. Three weeks later I became sick. |
Now looking back it has become so clear that during this
very difficult time God was at work. I didn’t
exactly see it at the time but when I reflect back I can so easily see where He
was in my experience. Before leaving the
hospital we had to have a primary doctor listed on my charts. At that time I only saw urgent care doctors. God sent this sweet nurse to help guide me
through the process. She helped me
select the perfect family practice doctor. This doctor became my go to doctor and she
was eventually responsible for figuring out what I had but it would take months
to find a specialist that could help.
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Visiting baby Caden in 2009. I remember being so happy to see Caden and so scared with how sick I was feeling. My symptoms were not improving. |
Over the next months I went to doctor after doctor trying to
get tests and specialists that would listen to me. Many of them tried to fit me in “their box”
of specialty but when I no longer fit they stopped helping. After months and months of this schedule I
eventually found a cardiologist in Lincoln and took two trips to the Mayo
Clinic where I was officially diagnosed with Postural Orthostatic Tachycardia Syndrome
(POTS).
My treatment for several years included several medications,
tons of salt, lots of water, compression stockings and exercise. Exercise was the most difficult because of my
extreme fatigue. Once incorporating these
therapies I saw improvement in my symptoms but I was constantly fighting to
keep my symptoms under control. My blood
pressure was always very low so I would feel foggy most of the day. However, I was pleased to be able to get out
of bed which had been difficult just months earlier.
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In May 2010 we adopted a golden retriever named Heber. I was forced to quit my teaching job and Heber became my constant companion. When this picture was taken I was not feeling great. We left the event because my symptoms got out of control. That the thing about POTS.... you can feel pretty rotten and look just fine. |
In 2012 I started hearing of a program that a Dr. Benjamin Levine was
working on in Texas. He had patients incorporate
exercise as their main therapy. His
patients were on NO medication. Over the
year I would hear about the program from POTS blogs and hear that the program
was working for patients.
In late fall of this year I found out that after being
amazingly successful in clinical studies it was now released to doctors to administer
to their POTS patients. That meant that
I could start the program with my doctor here in Omaha. It arrived in January and it was the greatest
gift!
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Opening Christmas gifts with my nephew. Little did I know God had another gift coming my way. A POTS plan that was going to work! |
Around Christmas time I went off all medication. It was quiet the transition for my body. I had been on some of the medications for
years straight. My heart of course went
out of control and my symptoms got worse but I felt confident because we had a
plan to fix it.
The plan in very complicated but I will give a brief
overview. The main portion of the
program is exercise. One of the most
important exercises is the concept 2 rower. I
spend LOTS of time on my rower. We
purchased one because it will be something I will need to do for the rest of my
life. After completing several heart
related tests and putting them into a complicated formula I get three different
heart rate zones. Every day is
different. Each day I am given an
exercise format (rower, bike, treadmill), a length of time, and a heart rate
zone. I have to keep my heart rate in the
zone for the amount of time on my schedule.
My workouts are never less the 40 minutes. Most days now in month three I am at an hour
or more. I also lift weight twice a
week.
My first month and half was very difficult. My symptoms became worse and it was hard to
keep doing all the exercises. However,
at my month and half point I started to feel so much better. My symptoms improved and I felt stronger than
I ever had since getting sick.
Today I am in month three and I have started to incorporate the
treadmill. I am feeling better then ever! I can feel my old self coming back to
life. I still have POTS and I still have
days where my symptoms give me trouble.
However, overall I can’t believe how much this program has improved my
POTS symptoms.
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Drew and I on a recent try to North Carolina. I got to travel and we even ice skated! |
In the last four years I have learned a great deal. This was not something that I ever saw
coming. However, God has used it to
change me. I have learned more about His
grace and love during my low times then I ever would have without this experience. God surrounded me with a loving husband,
family and friends that have stood by me during my daily struggles.
I will continue to fight with POTS each day but now I know
how to best keep my symptoms under control.
I hope that anyone that may be facing POTS takes a serious look at the
program from Dr. Levine. I have tried
EVERYTHING and this program has changed my life!