Thursday, July 26, 2012

When the Protocol or Theory Is More Important

This is going to be a deep post and fair warning, it might be upsetting to some if they can relate to some of the things I'm about to describe. Before I get to the heart of the matter though, I have to give some backstory to give people, who aren't familiar with my story, an understanding of where I am coming from.

As I approach the 5 year anniversary of this blog and 12 year anniversary of suffering from POTS, I look back and admit I have not made nearly as much progress with my health as I had hoped.

So I ask myself, what went wrong?

Well I realize I was pretty naive and misinformed when I started tackling my health problems. I thought I knew it all. I thought it was going to be simple and that as long as I "stuck with it" I'd eventually find my magic bullet.

Is there a magic bullet? At this point in time, I really do not know. What I do know is that for my POTS, it is not a simple thing fixed with some supplements, salt and drinking more water. With everything I have tried up until this point, I'm operating on the premise that there really may be no cure for me. If you thought for a second that I have "given up", then please continue reading this post because you really need to hear what's on my heart.

Because POTS is simply a collection of symptoms, your POTS and my POTS may be caused by completely opposite and different things. Some people have high BP with their POTS, not low BP;  some have normal or high norepinephrine levels. Others have low nitric oxide, but high nitric oxide has been seen too. Each end of the spectrum is seen in POTS. I don't know your history, genetics and other environmental, physical and developmental factors that may be playing a role in your POTS and you do not know mine. What holds true for me, may actually make another POTSy very sick. What doesn't work for me, may actually work for you.This is why you need to see a doctor and get a complete work up.

With that backstory, now it's time to get into the deeper aspect of this post.

"You did not do it right. You did not use the right supplements, use the right dosage, the right brand or wait long enough for the protocol to work."

How many of you have had someone attack and blame you for being sick?

I could go on and on with some of the things people have said to me over the years, but the details do not matter.  I have been told these things by fellow POTSies, CFS sufferers and other chronically ill people. I'm not even mad at any of these people. I feel more sadness because I wish they could understand what this type of thinking does to the people they are pointing the finger at and what it does to others reading these words.

It's like a plague infects the groups and the people within it. This idea that if it did not work for you, then you did it wrong, begins to resonate and take over and others adopt these same attitudes. New members see this and begin to take on the same attitudes and before you know it, the group simply becomes a place to follow and talk theory. "Theoretically you should do this". I have been told so many times "this is the fix" "just do this". Well I still have POTS, so those theories did not work for me... What am I supposed to do? Lie that I'm better?

When the Protocol or Theory Becomes More Important

This section might be a little hard for some of you to swallow. Understand, everything I say is out of love. I want people to break free from these chains we have placed on ourselves. I'm reflecting on my own experience.

As I started my health journey, I would subscribe to whatever new theory I had stumbled upon that day, week or month. I would read as much as possible becoming completely obsessed with it and reading website after website about the technicalities and science behind "how it worked". Once I got a good grasp of it, I was either convinced this was the "next thing" or I would decide it wasn't worth pursue any further. More often than not, I'd completely dive right in and become dedicated to the protocol in hopes that "this was the one". Remember at this time of my life, I thought this was just a matter of taking the right supplement.

My husband and I took this stuff extremely seriously. We followed the protocols exactly, following the DO's and DONT's precisely. It did not matter what it was, we did it because the protocol said so. We bought the best supplements, vitamins, minerals, herbs and followed things exactly. We both kept journals or made note of when we started a supplement. We started things one at a time and refrained from changing things on a whim. We went to the best of the best doctors, ordered all the right tests and did everything perfectly. We wastefully spent thousands and thousands of dollars.

I became personally invested in these protocols. I acted as if I was in a competitive sport cheering for my team. Rolling my eyes and scoffing at anyone who might suggest it was not a good idea or had an opposing idea or suggestion. After all, I could not let anyone attack MY protocol. How dare someone insult ME like that...

Come on! I am being real. I know some of you right now feel this way about a theory. There are so many nowadays, I cannot even keep track of them all.

Well I am done with this type of thinking. The person I used to be is dead now (figuratively speaking here).  I was Born Again on June 16 and God has been changing me over the past few weeks. I am no longer that girl anymore. I was trying to fight it, but I am done fighting. I had made my health my God. I had made the theories, my God. I had made everything and anything my God except for the real God. WOW!

The cold hard truth is that 5 years later, after trying hundreds of different supplements and protocols, I still have POTS. There is nothing I have done that has cured it. That is a fact.

To make matters worse, with our experimentation  my husband caused irreparable damage with a supplement and now has permanent hearing loss with hyperacusis. He has to walk around the house with ear plugs in. I can't sing around him. I can't do the dishes near him. Going to the store is excruciating for him. We got nothing good out of any of this stuff, so I'm done. No more paper theories.

I find genetics fascinating and I will likely make some posts about neat things I find out. However as far as nutrigenomics goes I just cannot do it anymore. I originally came here to help people, but I do not have the answers. All I can tell you is what did not work for POTS. That's everything I've written about and tried over the past 5 years....

Take Home Points

Do not let any protocol, doctor or theory become what you live for or live by. Come up for air and look around. If you aren't getting better, please be able to admit this to yourself. Don't let someone tell you you just did not do it quite right or did not take the right brand of supplement. This keeps people chained down for years. I know people who spent years doing various supps, hormone replacement or mercury detoxing with tiny amounts of success. Many of them are still doing it looking for the right dose, the right combo, the right... "This will be my lucky break".

The defend-the-protocol-at-all costs thinking is so detrimental. Watch yourself from slipping into this thinking. It is so common that people do not even know they are doing it. Take a look around and be real with yourself. Are YOU doing it now? If someone came up to you right now and said your supplement regimen or methylation theory did not work for them, would you feel offended? Would you tell the person they did it wrong? Would you listen to them at all? 

Do not let your poor health become the only thing you live for. I suggest taking a look at Dan Mohler. There is so much more to live for!

I love all of you. I have met amazing people in the past 5 years. But I have lost my desire to keep discussing these theories and concepts that never pan out. Just talking about it and theorizing and pretending we have any idea is not fun anymore. 

I will continue to make videos on my Youtube channel because having POTS stinks. I will still be looking at my genetics as well.

No more theorycrafting from me. I'll probably start writing about my spiritual journey and just my day to day life. This is a new chapter in my life, no longer focused on stupid theories, supplements and health.

God bless!


JoyousFlame said...

This makes perfect sense. Your approach sounds so much like mine-- spending years doing full-time research, getting excited and hopeful about each new prospect, following the protocols, getting demeaned or accused when the protocols didn't work or when we detected flaws in the theory, getting discouraged, finding another new theory, etc. It's so funny; I spent the past week reading all about the SNP analysis and becoming convinced it would finally solve the mystery. Yet in reading about 10+ people who've had the analysis, no-one is any closer to figuring out their exact cause of dysautonomia.

This isn't to say that there isn't a right answer out there. There is. But the scientific knowledge is not advanced enough yet to know what it is. And for each person the cause will be slightly different. We may all have a messed up methylation pathway, for example, but there are 50+ different proteins involved.

We can be part of the future solution (which I think will have to wait for full genome and epigenome analysis), so I don't believe in giving up and becoming entirely passive about the whole thing. But in the meantime it may be better to try to live as happy a life as possible despite the limitations of dysautonomia.

Wishing you health and happiness,

Dana said...

What I am doing though isn't being passive in my opinion. Just a different way of looking at things. ;)