Wednesday, April 30, 2014

Response to POTS and Integrative Medicine on Katie

Two posts in one day. I'm such an overachiever.

There was a segment on Katie yesterday about integrative medicine that briefly mentioned POTS. I have seen a multitude of reactions to yesterday's show; I felt inclined to give my reaction and thoughts on the subject.

Yes, it is no secret that I am pro integrative medicine, but I still believe any medical treatment should be met with critical analysis, research and knowledge. From that perspective, I do agree that we, as a POTS and chronic illness community, should bring a certain amount of skepticism to any claims or reports we see on TV.

With that being said, here are a few things I feel compelled to comment on.

1. Wendy, our fellow POTSie, never claimed to be cured in three to five days.

I have noticed the skepticism of some is rooted in the fact that this woman claimed to get better in three to five days. What Wendy said was that her severe neuropathy pain at night was gone in three to five days. To me, saying that an herb made neuropathy pain better within a few days is no different than someone who says his/her tachycardia was better within a few days of starting a beta blocker.

Wendy also said that her circulation and blood pooling issues were significantly better after acupuncture and that after a combination of treatments, she is feeling much better. So those are the facts we know.

What we don't know is: how long Wendy suffered with POTS, how long she underwent acupuncture and treatment, what symptoms or comorbid conditions she has/had, what her POTS trigger was, what "feeling better" means to her (she never used the word cure), what she has to do to sustain her current condition.

So you don't think I am just up on a soapbox, when I first saw this segment, I felt a little jealous at first and found myself comparing myself to her in a defensive way. But I rewatched the segment a few times and reminded myself that I don't know her journey — past or present.

I would just hate to alienate, judge or invalidate someone else's POTS experience just because she is doing a lot better. Rather, we should embrace every fellow Dysautonomiac, no matter the severity or current state of his/her condition. If someone happens to be feeling great or found a treatment that worked, rejoice with him/her and draw hope from it.

2. This is TV — and ultimately — entertainment.

Keep in mind this segment was less than 10 minutes long, and the focus was Chinese and alternative therapies. The mention of POTS was secondary and a small blip. There was not time for details, so of course, the success and ultimate result was where focus was placed. Bringing in a patient these treatments didn't work for or someone who wasn't well into treatment wouldn't have served their purpose of shedding a positive light on the topic. That's the nature of entertainment.

3. I am grateful for ANY awareness and exposure that POTS receives.

The mention of POTS was very short. The reality of the syndrome, and its debilitating nature wasn't explained. To a certain degree, the POTS most of use know and don't-so-much-love was minimized.

Those are all fair statements. But in my attempt to find silver lining, POTS was mentioned on national TV! I am grateful for that. I am grateful that Katie Couric is starting to hear about it. I am grateful that someone watching who wasn't familiar with POTS might have looked it up after the show to learn more about it.

Sometimes awareness comes in baby steps, so I am happy with this tiny step.

4. We all have different paths and results.

We won't all get better. If we do, we won't all get better from integrative medicine. That's the nature of a syndrome like ours. However, if this treatment trajectory worked for one person, it will perhaps work for some others. Personally, that gives me hope for myself and for my POTSie brothers and sisters out there.

Two Years and Counting...

I am a little late with this post, but I am on the verge of dizzy-free right this moment, so it seemed like a good time to finally write this post.

Last Thursday was my two-year POTSiversary. It was a bittersweet day.

This is what the past two years has felt like — a big, dizzy blur. :)
Photo credit: Smicko on
In one sense, I've been sick now for two years and have lost a lot: job, condo, money, independence ... my ability to wear a size 4. I became sick at the age of 29, and I am now 31. Something about that feels like more than two years, like I lost a chunk of my youth.

On the other hand, I remember that first day, week, month with POTS so vividly. While I am not quite where I want to be from a functional and symptomatic standpoint, I was absolutely miserable and scared in the beginning.

I remember laying on my parents' couch the first day my POTS hit. The tachycardia was intense and constant, no matter what position I was in. I was so lightheaded I couldn't sit up. I felt like I was on fire, and the shakes and muscle spasms were relentless. I slept maybe 2 or 3 hours per night. Taking a shower was the most challenging thing ever.

Looking back, I also now realize how my body told me what it needed. I was nauseous and had no appetite, but my mom of course was insisting I eat something, anything. For some reason, I wanted bacon. I remember my mom bringing me a plate full of bacon. That and Gatorade was all I wanted that first day. (Hello, salt and electrolytes!) I was so hot that I couldn't stop drinking Gatorade and water. When I finally saw a doctor who told me about POTS, electrolytes and staying hydrated, my reaction was basically, I can't help but do those things! It was my natural inclination.

Ultimately though, I have made it. I have made it two years with POTS. I have been through a lot these past two years, but I have survived. It hasn't killed me, and I am stronger. I am so thankful that God has brought me this far!