For those of you who read this blog who also have the unfortunate diagnosis of POTS Syndrome, I’m sure you’ve had the same inner monologue that I’m about to describe…and if you haven’t…you soon will! 🙂 For everyone else, I’ll try to make this rambling as clear as possible…no promises!
When you’re sick, you go to the doctor, the doctor treats you, you get better, and life goes on…well, that’s how it should be anyway! When you’re sick with a chronic illness, after the doctor treats you, you don’t always get better. And well, that just pretty much sucks. Things go up and down and you get better and then worse again. It’s a roller coaster of emotions that NO ONE wants to ride. So what do you do? You get online and you search and search and search some more. Are you getting the BEST treatment? Are people getting better? HOW are they getting better? Are there any other real options out there? And so on and so forth. It was in this type of search that I came across a woman’s blog and was introduced to the Pots Treatment Center. This is a center that only treats patients with POTS and Dysautonomia. They do this by utilizing biofeedback, heart rate training, diet and nutrition, and different types of counseling services. They believe that there are ways to regulate the autonomic system that is out of whack. This is all they do, all day, everyday. They have testimonial after testimonial of patients who sound just like me, who got notably better.
The kicker? This center is in Texas…of course! They have a 2 week program for out of state patients to do an intensive treatment for 14 days, and then they provide patients with equipment and skills to continue their treatment at home for another 6 months. From what I’ve read, this is not a lot of fun, but what is when it comes to POTS?
Here’s where I’m stuck…1) Texas is far away 2) 2 weeks away from my kids makes me want to puke 3) Insurance doesn’t cover it 4) We’re talking $7,000 5) What if it doesn’t work?
On the other hand…1) 2 weeks away to regain my life…that’s no time at all 2) Texas is only a plane ride 3) $7,000 to have my life back is worth the cost 4) I can fight with my insurance company so they cover it 😉 5) What if it DOES work?
It’s hard to know what to do. I feel stuck in this place of unknowns. I am feeling “better”. I’m functioning, I’m working and driving and being the best mommy I can be. Is this the best I’m going to ever get? That’s depressing. I spoke briefly to my doc in Boston about this and she seemed to think that I had a mild case of POTS and that as long as I’m functioning, I’m doing better than most…which is great, but also awful. I want to say that I’ve exhausted all of my options…but I’m not sure if this one is worth the risk.
My sister called the treatment center and they outlined what my treatment plan would be…down to the cost and the best restaurants in that area (she knows food is the way to my heart…). I still just don’t know what to do. Family members have offered to go with me, to help me pay, my husband has said we’ll make it work no matter what I decide to do. I continue to search the internet for more information, and I still come back to this center. I’ve talked to 4 people who went there and felt much better…1 of them told me it saved her life. She was suicide bound. I spoke to 1 woman who went and it made no change, but it turns out that she has several other health issues in combination with POTS. So far she is the only person who said she wished she hadn’t spent the time and money…obviously!
Here’s what I’m talking about…take a look if you’re interested: http://www.potstreatmentcenter.com
I can do a pretty spot on southern accent…so maybe if I do go that could finally be perfected…ya’ll 😉