Life's Path...

The "Spirit of Me" feels lighter today...
I feel uplifted, positive and yes, even hopeful.
I think I had started loosing hope for a "better tomorrow" a while back... each day things just seemed to feel less than par... or worse.
I really struggle when I find myself in those ruts.

There are several aspects to contend with in deciphering why I vacillate in this cyclic, manic-depressive type fashion...

My twin eight year olds' behavioral-mental wellness challenges that beat on my stress nerve like a iron mallet to a piece of glass... sharp edges and complex shatter patterns... the whole package ignites my Porphyria on a daily basis like gas on a flame. My goal is to identify and secure solid therapeutic treatment to help them heal.
When I am "sick", my mind, body and soul become depleted... and my family initially goes on "auto-pilot". If my "illness" persists long, the whole family dynamic turns chaotic and dysfunctional. My husband becomes overburdened, resentful and angry. My children become needy, craving attention, acting out to get it, matters become even worse.
I feel physically miserable, emotionally drained and mentally "not myself". Guilt strikes me... I feel guilty sometimes about the fallout that these AIP periods cause. Sometimes I get angry... angry because it is not MY fault! I don't want to be like this! If the STRESS level weren't consistently SO unbelievably high in my home life... AIP might be much less active.
Usually after a spell of feeling just awful, and unable to do much more than rest in the bed... I will wake up one day feeling like a normal person... no stifling pains, no nausea... I have emotional calm, mental clarity. I want to take on the world... make up for all the time I "lost".

I did the 26 blood tests and now I have been to my Primary Doctor. All tests back so far area within normal parameters. My liver enzymes are slightly elevated. For the first time in many years all of my vitamin levels, especially Vitamin "A" have stayed within normal limits without high doses of supplements! My vitamin levels normalized after I went gluten and bovine dairy free. My theory is that I have a sensitivity to gluten and a known sensitivity to the whey in bovine dairy... each time I consume these products I develop significant indigestion, gas, bloating, headaches and joint pain with swelling within 24 hours. Anything that causes these types of reactions is obviously irritating one's digestive system... with irritation comes swelling and decreased performance ability. I believe that my nutrients were not being absorbed properly due to on-going irritation... even with significant amounts of supplements in addition to wholesome foods.
An interesting tid-bit I was told long ago is that "when someone has frequent urinary tract infections Vitamin "A" stores can be depleted"???? Also, "people who have both a Vitamin "A" deficiency and an iron deficiency (anemia) can be difficult to heal the anemia issues"?????
I will keep to my new way of eating... because it makes me feel better.

My doctor was her pleasant self as always. I wasn't feeling my best that day... but I was ok. She spent about 40 minutes with me, evaluating my situation. My next visit is scheduled in 3.5 months... short-term disability renewed... long-term disability denied! Denied! Denied? My doctor knows that STRESS is an enormous AIP trigger. She also knows that my son's untreated psychological/behavioral condition is my primary STRESSOR. With proper treatment his behaviors will become regulated and my STRESS will be significantly lessened. Lower stress levels create the possibility that I may return to some form of nursing work.

I was angry with her initially... I have tried and tried... I haven't found anyone who can help him... what if I never can! Ahhh a mental switch flipped for me! I can, I will, and I MUST find the right intervention to help my son! There is NO other option. Finding him a solution to his challenges provides the only solution to a large part of my challenges (in theory anyhow).

I went to the hospital today. Externally I looked like I was dressed for a yoga class. They said, "no metal at all on your clothing for an MRI". Internally I was a little nervous. I have never had an MRI before. What if the IV contrast made me sick? I didn't know what to expect at all. I was digging up harbored anger and resentment about always being alone at every new or "scary" point in my health management. I shook it off... it wasn't positive or helpful. The woman who did my MRI was very kind and the procedure wasn't bad at all.

After the MRI I remembered to ask for a "disk" copy. The Liver Specialist had requested I bring him one. Then I went to see who was sitting at my old desk...
Yeah two of my favorite coworkers! We had a good visit and I went down to our main department area. My boss was in a meeting so I scheduled an appointment with her for this coming Tuesday. Then I spoke with our Pediatric Social Worker. She asked and I summarized my son's situation. She gave me the name of a local specialist that might be able to help! Then I went in to talk to the lady that I was hoping to "job-share" with come April 2012. She has a small office to herself and reviews patient charts filing appeals for denials, and submitting clinical information for insurance company review. She had devastating personal news... her husband was quite unwell. She would like to start job-sharing as soon as possible. Hmm I thought I wonder if I am ready to try? I wonder if my doctor thinks I'd be ready for this type of work? I wonder if my old boss would let me give it a try? So many, "I wonders"... so much happened in just two hours time yesterday morning. I meet with my boss on Tuesday, till then I will pray for guidance and call the suggested doctor for my son first thing Monday morning.

As I readied for bed last night I reflected on the day. Isn't it ironic that you can wake up on one path in life... then go to bed that very same day with a whole new direction available and ready for exploration... life is exciting, scary at times... but NEVER hopeless.

Bits and Pieces of Me Lately

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

26 Tests for the Hepatologist (Liver Doctor)

I had an order for blood work to be drawn, one week prior to my upcoming abdominal MRI, so today is exactly one week prior.
"Fastng" began at 8pm last night.
I dropped the children off at school around 8:50am this morning and drove directly to the lab to have my labs done as ordered.
I signed in at 9:18am and one hour later I had my 26 tests (13 tubes) drawn from my right arm. (Over $3K without insurance... $15. copay with insurance... thank God for my husband and his job!)
I have been having a lot of "Porphyria" activity this week... but after having an EXTREMELY stressful morning with my son and fasting for 14 hours, when I asked the lab technician if I could use the restroom, my urine looked like "dark ice tea" and smelled of "old dirty socks".
"Here we go again!" I thought as I rushed to the closest "Starbucks" where I ordered not one, but TWO breakfast sandwiches and a "Tall Skinny Hot Chai". I ate every bit of it all as I drove home...let the dog out...then back in... and now find myself in bed typing my thoughts and day away until I can calm my body enough to rest a bit.