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

Wednesday, November 11, 2015

All The Lovely Bones...

In Spain, I visited catacombs. Beneath my feet were the bones of hundreds, if not thousands, of nameless people, long passed and past, whose lives and loves have been lost to time.

All that remains are the bones...

In my favorite childhood novel, the protagonist looks at her outstretched hand and studies the bones. She realizes, perhaps for the first time, the reality of her own mortality and all of its implications.

How sad it is that our legacies lie in a heap of bones. For as surely as we live on in the hearts of those who love us, those cherished hearts bear the same burden - the burden of time...

And all that remains are the bones.

And all that remains are the bones.

Monday, November 9, 2015

November Summer

Positivity can be a challenge for me.

Like some sort of mood chameleon, I tend to take on the outlook of my situation... If said situation sucks, then life sucks, there is no green grass anywhere, and no one cares if the glass is half full or half empty you idiot. If said situation is rainbows and kittens, then pass the champagne in that half-full glass! Green grass for everyone! Hurray!

My father likes to remind me that happiness is a choice. Cognitively, I know this is true. As one of my person heroes, Alice Sommer, proved, one can choose to be happy in the most dire of circumstances. (If you can find joy in a concentration camp, and choose to forgive your captors, then you're a better woman than me.)

Still, all the Sommer in the world (that her name translates to "Summer", the warmest and brightest of the seasons, is not lost on me) can't seem to disentangle me from my Winter brambles once I've wandered into them.

In fact, it often seems the more I fight the tentacular terror, the more ensconced I become... Try as I might to see the light or smell the roses, I end up dark and bleeding from the thorns.

Friends, it seems I've wandered, once again, into a dense patch of brambles. And I could use a sense of Sommer to light my way. If you've any positivity to share, I'd welcome it.

Perhaps with your help I can blend with your mood and adjust to your shade.

Sunday, November 1, 2015

I need help to save my life

I am having a very hard day.

Temp high again.

Spent much of today so far laying in bed, cold compresses on my head, taking Tylenol to bring the fever down. I feel so sick and so terrible. Even on meds for the stomach issues (protonix) and for the nerve pain/panic attacks (remeron), I still feel very sick, weak, terrible and terrified.

Can you offer any words of comfort?

I'm genuinely frightened for my life.

Specifically because of the fever and lightheadedness... Fever of undetermined origin could be anything - even something sinister - or not.

I do not know what to do. Most of what medical science has offered me thusfar is just symptom management, which, as I said, has provided little comfort.

I look online, and so many people go years or a lifetime without being diagnosed.

I cannot live like this.

I cannot be in bed everyday, cold compresses getting me through, afraid of what it is that my body is fighting - getting test after test that is negative.

Please, please - I am terrified. I so desperately need help to save my life...