Thursday, August 11th, 2016

My husband and I have our days where we are both so worn out emotionally/mentally/physically. In those times, we are like sandpaper. 

But we refuse to stay that way. Sometimes it takes longer than others. And praise God there is silver lining in that we smooth a little more of our rough edges. Yes, there are times we rush in and the sanding leaves damage that doesn’t seem to have a purpose (especially a positive one).

But I’m learning through the rare disease support groups I am a member of…that this is normal. 

The unique burden that not everyone is given is a uniquely heavy one and also different for us both (as significant others in this intimate relationship).
We have begun to find the more scientific and concrete etiology (origin) of the chronic depression, anxiety, chronic physical pain, chronic fatigue and hopefully more light will be shed on progressive failing of certain organs and structures I live with in the months…year(s) to come. 

I have many rare conditions and diseases stemming from mutated genes in specific areas (triggered and expressed after lifelong stress, trauma and environmental toxins).

We are told there is help in some cases. But it is not guaranteed, and results varying greatly due to the nature of it all and how everything complicates everything else. Like layers of an onion and sticky spaghetti trying to all be straightened and laid out (piece by piece…piles of research and documentation after another).

And of course the traditional healthcare system (insurance companies-medicaid included) has yet to fully recognize and support any of it.

But as I go through this process mostly on my own (relying on Daddy God every moment)…little…painstakingly slow…but happening none the little…those closest to me are beginning to witness things I go through and have gone through (physically, emotionally and health care support wise).

It is a profound thing…when your life changes so dramatically. And you are basically having to eat this elephant.There is no going back, regardless of what you or others desire and can or cannot handle. 

Your perspective changes in every area…in every way. The process of that can be ugly at times. It can one that is not very nice, pleasant or pretty. And our inner demons, hang ups, faulty thinking and ineffective mindsets all begin to bubble up to the surface (inevitably). I am no exception in that way, at least.

I don’t have all the answers. Even with the amazing invention of genetic and nutrieval testing and all the research and self-education I persue…immediate concrete answers are often incredibly mingled with the unclear, complicated and ever – evolving road blocks and dead ends.

It is not a persuit to know everything. It is not the addiction to cure everything that causes me to suffer. It is a tool to aid me in keeping one foot infront of the other. It is the gaurd against complete hopelessness and despair.

I am grateful that our creator made us in such a way to produce such scientific and biologically-based advancements.

And the same can be said of private support groups. My genetic, biological and physiological conditions/diseases may be rare…but there are many like me…suffering like me (like me-I emphasize).

I believe these are both gifts from my Heavenly Father…through individuals who refuse to give up and refuse to listen to ignorance, apathy and fear.

This is simply me – today.


About Erin Marie

God's girl. Wife. Mother. Zebra - rare illness warrior.
This entry was posted in Blog, Convictions, Family Updates, Genetic Polymorphisms (mutations), Hope, Marriage, Relationships, Special Needs and tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

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