manage my POTS/NCS

The 12-12 Plan is something that was suggested to a friend of mine for their MS (and to another friend for their ME/CFS) and they suggested it to me. The idea is that you’re “on” twelve hours a day and “off” the other twelve.

I’d like to try and stick to this plan as much as I can. I’ve really been struggling with school, my job and POTS: which is challenging enough on a daily basis but with the other two factored in – plus weather, stress, and thirty plus other factors daily in the mix – it’s almost as bad as it was a few years ago.

I’m hoping that following this plan will help. I’m terrified that all my hard work was for nothing and that I’ll end up back where I started two years ago. I also worry what this means for my future and what I’ll have for a quality of life.

While I’m still waiting on my results (ugh) I found out something that I thought was amazing when I went to get my next pair of compression stockings. It turns out that the company I’ve been using now offers a couple of colors and even black tie dye stripe stockings!! Seeing as up until now they’ve only offered black or tan, this is an exciting turn of events for me!

They’re still not normal looking, but at least they give a much better illusion of just being colored tights instead of hospital mandated hosiery. Normally, I wouldn’t be caught dead in colored tights, but in this case they’re an improvement to looking like one of the Golden Girls. I can feel 25 instead of sixty!

Now instead of having people come up to me asking what’s wrong with me because I wear support hose (which happened recently – how rude!) I’ll just look 80’s retro chic!

I can only get two new pairs every three months with my insurance, but I think I’m going to get myself a funky pair for Christmas :)

I’m still waiting for all of my results to come in. It’s been nine weeks. I can’t believe it’s taking so long. I went in May in the hopes that I would have a new treatment plan to work with over the summer; and in turn be better prepared for the semester.

What I absolutely did not want was to be changing my medications or messing with my system (which, as anyone who reads my entries knows is ridiculous in it’s sensitivity) while trying to work and go to school (and have that procedure done…). Now it looks like I might not even get my results and/or my recommendations until late August or early September; exactly what I was trying to avoid.

I’m assured that it will be worthwhile and that they’re very thorough, but this is really starting to upset me. Twelve weeks for results is ridiculous. That’s a quarter of a year. When your quality of life depends on it, it feels even longer; and when a procedure time frame and severity is dependent on it, it feels like an eternity.

I just want to get moving on this already!

This week I’m taking my biggest steps to date: I’m packing up everything and heading to Cleveland to see one of the most reputable names in POTS care. I’m nervous. It involves full days of testing (tests that I’ve never had before) that aim to finding the specific faults in my nervous/cardio/vascular systems to provide more directed treatment to those faults instead of treating the condition generally. (Which is what they’ve been doing and it’s helped some but there is still a laundry list of symptoms I experience daily that affect my abilities to eat, walk, sleep, etc.)

Here’s hoping this trip can bring new clarity and options.

I have the opportunity to travel out of state to go to one of the best hospitals in the country and see other specialists in these conditions in May. The testing they want to do I’ve never had before and is frightening to think about; but would shed new light on the specifics of my condition and might (no guarantee) lead to a new, more effective course of treatment. It could change my life, but it just as easily may not.

I found out that my insurance will only cover part of it as it’s considered ‘out of network’, so the cost may be up to a few thousand dollars. I’m torn on whether or not to take this chance…to put my body through two days of testing and go into debt on the hope that it will bring answers. (To be fair, either way will bring answers. Either something helpful will be found or I’ll find out that what I’m doing is all I can do…but is that risk worth it?)

This is more a little POTS story that I have to share. This conversation happened yesterday. I was talking to someone on the phone called a ‘health advocate’ who is supposed to help find specialists for your condition/disease to help you. You give them the condition(s) that you want help with, and they do the searching for specialists for you then send you a list of providers who supposedly can help.

Nurse: What condition do you have?
Me: It’s called POTS. Postural Orthostatic Tachycardia Syndrome.
(silence)
Nurse: Are you sure you’re not just dehydrated?

Um…what?

That reaction was so unbelievably stupid that I laughed.

I’d like to think that the 4 years of constant testing (including more blood and urine tests than I can count) would kinda have ruled that out…Not to mention that it’s been going on for FOUR YEARS. What does she think, I’m dehydrated and made up a rare disease to screw with her? Hell it was right there in my medical records in front of her as a diagnosis from several doctors! What an idiot.

I read an article a few days ago that the FDA is trying to remove midodrine from the market. To make a very long story short: they insist it’s not a safety issue, but that studies needed to continue approval status haven’t been completed. Right now it’s in limbo.

In the grande scheme of medicine, it means nothing to the medical community. There are just 100,000 dysautonomics in the US. This includes every type. POTS is one of many types of autonomic dysfunction. We’re a ridiculously small percentage that is insignificant compared to the whole country so the drug companies don’t really care about keeping it or not.

While the midodrine has helped quite a bit, I’m not overly enamored with it; and if there’s the possibility that it will be pulled, I want to find alternatives. I’ll be asking about it at my next appointment.

I’ve contacted my insurance company and they’re also going to search for another POTS specialist in the area (ha! Good luck!) So I can see if there are other opinions as well.

For a while I’ve been doing alright but I seem to have taken a big step back. I’m back to being constantly light headed and having my heart pounding erratically. This morning I couldn’t stand while on a thirty second phone call or get down the stairs without tripping from my leaden, blood pooled legs. Just sitting down to write this my chest is tight, it’s hard to breathe and I can’t hold my head up. It breaks my heart. Back to the drawing board.

The news today has me a bit freaked out.

First, there was a girl who collapsed at school because of an arrhythmia. Her heart stopped; but she was lucky that two teachers jumped into action and used the paddles on her (and CPR) to bring her back. If they hadn’t jumped in when they did, she would have had a 3% chance of surviving. (Here’s the article)

Second, the man who collapsed and died in the Chicago marathon died from mitral valve prolapse (MVP) which I have. (I have an arrhythmia too.)

I’m already freaked out with the scans I have coming up for my arteries and this is not helping.

_{POTS Update: I haven’t posted much in this goal because there isn’t much to post. Though I’m trying my compression stockings and a new med, they don’t seem to be helping. I see my specialist again in three weeks. But that’s not the reason for this post…}

One of the hardest parts of dealing with my illness is the isolation (for lack of better word) that I feel; being different from everyone else I know, having this condition that no one’s ever heard of or that they don’t believe is real, constantly having to explain myself to my family and friends, and watching people walk out or write me off.

Lack of understanding is a big struggle. Not only does it keep me from having support from family and friends, but there’s a huge lack of understanding in the medical community as well; which is why it’s so underdiagnosed, lacking in research and information, and why there are so few doctor’s who’ve even heard of it, let alone can treat it. Hell it took me three years to get diagnosed.

The mind blowing bit:

My POTS specialist gave me a dvd the last time I was in her office that explains POTS and what life with it is like. She asked me to show it to my family; which I haven’t done because they scoffed at it when I told them about it.

Last night, Z and I decided to watch it.

It was…well, there’s no other way to describe it than ‘mind blowing’. It was purely informational, but it still reminded me of a great movie: it made me laugh, it made me angry, it made me feel understood as well as educating me. It made me cry.

Even more so, it evoked all of those things in Z too. There were times when he reached over to squeeze my hand because this was me. It was everything I had gone through and was going through. Everything we were going through. Everything we had been trying to tell people.

When it finished, I looked at Z and he told me that everyone needed to see that dvd. We’re going to get our hands on a few more copies and send them out.

Right away, Z said something that surprised me and brought me to (happy) tears. He said he wants to send one to my former best friend; with a letter telling her that this is a real thing and asking her to please watch it. Even if she doesn’t watch it, I was incredibly touched that that was the first thing he thought of. It was the first thing he said when the dvd ended; “I’m sending one to C, she needs to see this.”
_{She told me I was too ‘flaky’ and didn’t believe I was really ill…so she stopped taking my calls/texts/e-mails, etc. It really broke my heart.}

He wants to show it to his family, send one to my dad, have my mom and sister watch it, and send one to my grandma. He also wants to have his cousin (the jerk) watch it. (I highly doubt that will work, but I appreciate him thinking of that and taking it so personally.)

Z also is going to ask his roommates to watch it. He wants as many of the people that I come in contact with to see it because, in his mind, the more people who have some sort of understanding of what I’m going through, the more comfortable I’ll be. He’s right. I will feel a lot more comfortable going to family functions (or hanging out with his roommates) knowing that they at least know what’s going on when I have to leave, or when there are days that I’m just too ill to attend; and it will mean I don’t have to constantly be explaining myself. It will help me to feel less guilty and ashamed. Less like a freak show.
_{Like they said in the DVD, POTS can be just as debilitating and life affecting as Diabetes or MS or cancer (not fatal though obviously- and their words, not mine so don’t take my head off please) but because people know about those conditions they’re more willing to be understanding and make exceptions.}

We’re also going to do something that may just piss off my GP. We’re going to ask the POTS doctor to send him a copy of this DVD with the request that he watch it. It won’t help me, but it may help someone else…and it may get the not-so-subtle point across that this isn’t just a “suck it up and deal” situation.

I don’t now how many of these people will actually watch it, but Z is very passionate about getting it out there. He feels it’s important. I feel it is too. Awareness has the potential to make my life a bit easier. It won’t help me physically, and it may not even get me the support I’d like/that I could use, but a little more understanding has the potential to go a long way.

I wish I could upload it so that people here could watch it if they wanted to…but that would be copyright infringement and I don’t fancy going to jail!

_{However, I am going to go out and get several copies. So if anyone would like one, even just out of curiosity, please let me know and I’ll be more than happy to send one out. Happy to spread awareness :)}