May 18, 2014

“If you think education is expensive, try ignorance”-Dereck Bok

Your Lyme Voice Cost Of Life EducationI was doing some writing for my upcoming blog post for the NM Fiesta project (my 15 hour a week gig, working with post adoptive families in Rio Rancho). I was using my Microsoft office dictionary to look up the synonyms for the word “autonomic.” When it turned up empty several times, it redirected me to a medical dictionary. I was feeling pretty impressed with myself for using a word that my PC didn’t know (don’t get snotty I have a Mac as well).

Then I started thinking about all of the medical and chronic issues we have dealt with that have led to this knowledge. So many in fact, that I need to use the word autonomic so many times in a paper; that I even needed a synonym!?!? Then I immediately began to think about the cost of Med school (not that I ever wanted to go) and realized that over the course of our 15 year marriage, we have spent approximately the same amount, on our so called “education” that an MD does on his.

An autonomic nervous system does all the things that we shouldn’t have to think about. Our body is designed to protect the brain (BBB). Few illnesses including Parkinson’s, Alzheimer, Lupus, Crones,  and Lyme affect those function until the very end stages. Mental exhaustion, utter fatigue,the inability to stand for prolonged periods, balance, vertigo, the list goes on.

Fibromyalgia, chronic fatigue, and chronic pain. These terms have little or no, political or sociological teeth. It is an incomprehensible pain, accompanied by comprehensible lengths of time, with an incomprehensible amount of personal costs, for what many people believe to be unfathomable levels of destruction caused by these diseases.

It is confusing for both the sufferer, and those watching. It threatens marriages, finances, hopes and dreams. Can good come from bad? Absolutely! Is there hope for those suffering year after year without a diagnosis and a list of “autonomic” functions that are NOT functioning? Sometimes! Does it come in the form of a pill that allows our lives to proceed with life as normal?

Moooostly No! Capable adults and children who suffer from chronic issues need the support of those who are able bodied. In whatever form you are able to help or bless someone who is suffering. You fuel a tiny ember within the spirit of that person, and that may be all that person needs to get to the next level. I believe these tiny grace-filled-moment are God’s gift to the brokenhearted people of your city.

If you know of someone who is suffering please consider helping them in some way this week. Not “when they call you” but NOW. I have friendships that have been on the back-burner for years, because of my health issues. So many of my friends have blessed me in tiny ways along the way: jolted me into reality when it was fading, and inspired me to fight when I didn’t have any fight left in me.

I was surrounded by support and yet didn’t have the strength to organize it. I prayed like God was my rock, and my fortress, my deliverer in times of need. I researched; and scheduled continual appointments, as if my life depended on it. Turns’ out it did, but I didn’t know that at the time. I implemented every nutritional and supplemental plan I thought could benefit me within my budget. And I learned to advocate for myself within the medical community.

My dear friend Brain Doerty and first Qualifying Broker, said to me on many occasions that “education is expensive.” No matter what form it has come in, those words have rung true for me over and over again. Sadly, for many people, their lack of knowledge about Lyme could cost them their lives. If you know of someone who is dealing with a chronic case of autonomic-MALfunction, please do these two things.

One, pass along my name and contact info. 505-681-3364. Secondly, purpose to help them in some way, immediately. People without a diagnosis can rarely qualify for disability or assistance. They have to play the “game of Life” on a different board-game altogether. I remember sitting, dejected by yet another Neurologist, as he told me my seizures were being caused by anxiety that was “all in my head”. Those were his actual words as I sat in a wheelchair, unable to spell or hold up my own head.

Ten years into my chronic issues no one (except me) was looking for answers, they were only willing to prescribe medication for easing the symptoms.The Doctors at Shea Medical have changed the trajectory of many lives for good.

The cost of testing and an initial appointment is approximately $1500. Regardless of the state you live in, phone consultations, supplements, medications and help are available. Many people who have fought for so long for their health and basic autonomic functions have exhausted their resources both physically and financially. If you are healthy and want to help, consider contributing or encouraging someone in some way.

Thank you, to the many people who helped me along my atrociously lengthy journey. Your patience, generosity and friendships hold a special place in my heart. I do not know what tomorrow will bring. Yesterday I did a 90 minute hot yoga class and it ROCKED!!! I went to not 1, not 2, not 3, but 4 stores in one day with all my kids and it went pretty smooth! I haven’t been able to tackle the whole Costco/Sprouts/Walmart/Lowes in one day, in ages! Woo-Ho, all around! In my head I’m high fiving everyone in this theoretical room, as taught to me by Jenny Schlichte!

So, today I smile as I rub Traumeel on my sore but growing muscles!!! By the time I see the judge for my disability claim I believe I will be past the point of needing help. While it could have been extremely helpful, I praise God and thank those around me for their constant friendships and unwavering support As my Pastor Friend, David Megill taught me…Smiling at the future-Sarah

P.S. I’m serious about your friends. Tell them to text me first or FB me or I probably won’t pick up, my heart is with them but my body is still healing, it is the best that I can do right now! Praise God I even had the stamina to type this!




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