Friday, November 27, 2015

Dysautonomia - my life sentence

On Tuesday, they strapped me to a table.

I averted my eyes as she put the IV in.

I stared at the ceiling when they applied the half-dozen or so monitors all over my chest and torso.

Then they tilted the table upright.

I passed out.

...

For about 5 months I have been suffering.

Daily.

With the symptoms, of course, but also with the uncertainty.

Suffering knowing something is desperately wrong with me, while test after test came back negative.

While more than one doctor told me it was all in my head.

And then I passed out on the table.

...

Dysautonomia.

That is what I have.

For those of you unfamiliar with the term, it basically means that, for some reason or other, my autonomic nervous system (the one that controls your involuntary functions - digestion, heart rate, circulation, body temperature controls, fight-or-flight response, breathing) stopped functioning properly.

My fainting spells?

Dysautonomia.

Daily fever for 5 months?

Dysautonomia.

Inability to eat?

Dysautonomia.

Constant nausea?

Dysautonomia.

Excessive sweating for no reason?

Dysautonomia

Feeling feverish/lethargic/like I have the flu?

Dysautonomia.

Tachycardia?

Dysautonomia.

Palpitations?

Dysautonomia.

Uncontrollable panic attacks?

Dysautonomia.

Vision blurs?

Dysautonomia.

Neuropathy pain and muscle weakness?

Autonomic neuropathy from...you guessed it! DYSAUTONOMIA!

...

So what does this mean?

Well, dysautonomia is incurable.

Sometimes it presents as a secondary disorder, meaning that, if the underlying disorder is addressed (usually diabetes or MS or Parkinsons), then patients see an improvement in their dysautonomia symptoms.

But for those people like me - people for whom doctors cannot determine an underlying cause of the dysautonomia - the prognosis is not good.

For many people disautonomia is degenerative. For some, the degeneration eventually makes it fatal.

...

Vanderbilt University has a dysautonomia center. I believe Mayo Clinic has one too. So those are my next steps.

I have been placed on medications to attempt to lessen my debilitating symptoms. Unfortunately they have not provided much relief, which has resulted in my being housebound much of the time.

...

I have always been an extraordinarily active person.

Since childhood, at least 5 days of my week could be accounted for with physical activities - dance, gymnastics, flag corps, show choir, rollerblading, riding my bicycle, going for miles-long hikes. This was my life. This was my stress relief.

Now I am attempting to come to terms with the reality that I might never be able to do those things again.

In addition to the daily pain, nausea, and panic attacks, I am also attempting to come to terms with the loss - loss of the woman I thought I was, loss of the international adventures I thought I'd have, loss of the family I hoped to have with Scott Miller, loss of my mobility and independence.

There are many who have suffered with dysautonomia. Many who have written books about making a house-bound life still a life worth living. I am not ready or able to process those realities yet... especially as the books and blogs I have found are written by women who got to live a life - got to have a family and a career - before getting sick.

...

I don't know why I got sick.

Many times dysautonomia is triggered by a viral illness that somehow sends the body into a tailspin from which it cannot seem to recover. I was ill shortly - about two and a half weeks - before the onset of my symptoms.

Perhaps this virus was the trigger that set this series of events into motion.

...

I want to say a heartfelt thanks to all those who have been praying for me.

I want to ask that you please continue to stay in my life despite my limitations.

I want to ask for continued prayers for healing - because God is capable of great things - and maybe, if enough people ask, He will look down with favor upon me.

I want to ask that we find doctors who can give me medicines so I am not in pain all the time.

I want to ask that you please support my husband, who has been nothing short of an angel for the duration of my suffering.

Pray I have a good quality of life.

And please help us in any way you can...

It is likely I will end up applying for disability, as daily activities are becoming more and more challenging depending on the day.

If you can think of any other way in which to help, then please do so.

My small family is really struggling right now.

...

If you or someone you know suffers from dysautonomia and has a success story or tips on how to handle the discomfort, pain, and very real terror, please do point them in a direction to contact me.

In the mean time, you can read more about dysautonomia here: http://www.dysautonomiainternational.org/page.php?ID=34

To read more on autonomic neuropathy, try here: http://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/basics/definition/con-20029053

3 comments:

  1. Devastating. I'm so sorry to hear that an old friend would ever have to face such bullshit. Sending love, energy and prayers your way.

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  2. i'm in australia and we have viruses like that which basically generate antigens that cause autoimmunity attack, in your case on the nerves !

    zinc seems to help with this

    http://mueller_ranges.tripod.com/links/compendium/copperandzinc.html

    a good quality krill oil helps with brain plasticity

    multivitamin formulations have "garden fertilizer" type minerals in which cause bad gut microbiome

    you also want to look at "leaky gut" and the SCD and BCD diets

    these viruses can take a year or two to get over, the future is not hopeless, just try things out, medical names are of limited help !

    getting strong sun on the skin is also immunosuppressive, you don't need much, but a little may be helpful and oral vitamin D will help as well !

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  3. Erin - Jason (Garrett) just told me about this and I just wanted to let you know that I will be sending positive thoughts and wishes your way. I know we only met once, but Jason cares a lot about you, which means that I do, too.

    I will keep my fingers crossed for you and Scott.

    -Elizabeth

    ReplyDelete