As noted, I have really been struggling lately.
I am schedualed to see my Primary Doctor next Wednesday.
I have my first MRI, with IV contrast, next Friday.
I follow it all up with an evaluation by my Hepatologist.
I am currently receiving "Short-Term Disability" due to a "Medical Leave of Absence" from my half-time job as a Nurse Care Coordinator at the local Emergency Department. I love the nursing profession and am proud to be called a nurse... but I don't know if I will ever have my disease "regulated" enough to be productive as a reliable "employee" again. That makes me so sad.
My joy is that I still have the ability to write, to share, to validate and to help other "patients" like myself via my written story.
Just the other day my daughter dropped in for an unexpected visit.
It was wonderful to see her.
Even though she lives minutes away... she is 20 years old and keeps a very busy life. As we sat and talked on the living room sofa, I confessed that I had been really struggling with AIP and with life. I apologized to her. Many times when we see each other I bring up AIP.
"I don't want, nor have I ever wanted AIP to be our strongest common ground".
My problem is... when I am with "you" (my daughter) "you" really "understand" what the "storm" feels like inside my body... you understand without trying to find words or make analogies.
I have been feeling like an alien on a planet where no one understands me...
I feel confused...emotional... secluded... in pain and medically without hope.
With you I feel validated, understood, believed in.
I am truly grateful that my daughter has not experienced AIP issues to the degree that I have and do... yet she is the only one who can, "see beneath my skin".
For such a young woman she showed great kindness, warmth and depth of character in comforting my spirit that day.
She does worry me regarding her own AIP disease management... she turns 21 soon and is planning to "go out"...
Alcohol has been a significant trigger for her in the past.
She is also considering re-trying hormone contraception, which has also been a significant trigger for her in the past.
She has a clear understanding of AIP, so I know that as an adult she will make her own choices... as we all do.
Today I reached out for the "strength" that connecting with a sibling can give.
My brother and I have known each other all of his life and most of mine, 39 years now. In many ways we are much a like. We are fueled by determination, perseverance, internal motivation and ethical responsibility; sharing common perceptions about our upbringing.
In other ways we compliment each other... I am deeply empathetic, I thrive on sharing the depth of my soul with a small handful of close family members... I wear my heart and the truth on my sleeve for all to know who I am, and what I am "about".
I have always known my brother to be an "excellent poker player" in the game of "real life"... rarely does he show the world how he truly feels or what his plans are... "his thoughts are his own". Many, many times I wish I were more like him... because openness brings pain and insult when the world is not as kind or caring as one might hope.
Together, I guess we as siblings are a "balanced set".
Life has inspired change in both our lives in the past year...
My sons were diagnosed with some significant behavioral issues.
My brother sadly divorced early in the year after a long term marriage.
Our beloved grandmother died in early Autumn. (Probable AIP)
Our father died in early Winter, after a long dance with many health issues throughout his life. (Diagnosed with AIP days prior to death.)
My brother happily remarried on New Years Day 2011.
My AIP remained chronic, vacillating in severity throughout the year.
During this past year, under significant circumstances, I have felt my brother begin to share more of himself with me. Although I know he is not "magically super-human" to me, my brother has a very strong spirit! I do love that about him... like grandma, dad, grandpa Wood, and mom (who thankfully is still here on earth).
Just like "borrowing a cup of sugar from a good neighbor", I need to "borrow 3 cups of extra strong spirit" to get me through an "empty spot in the cupboard of my life".
My text to him today read:
Thank you for trying to return my "I miss you" text with two phone calls... that I unfortunately missed.
Days of late are extremely trying...
My son's behavioral/ psychological situation will NOT be denied and commands constant attention/ investment.
My mind... my body and my spirit are drained.
I search daily for the "silver lining" or the "light at the end of the tunnel".
Nothing leads me to the comfort of answers, interventions or change.
My Porphyria has been constantly "prodded" by the situation, until it now "ROARS like a Lion".
Days are hard and I feel "jailed" by life.
Any insight that you might have would be appreciated... in lieu of your physical presence... that always provides a surge of strength to a sister's heart.
With Much Love/ Your Sister
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