The goal of creating this blog is to provide insight for those who have not experienced AIP (medical practitioners,co-workers, friends and family); and to empower those who have. I am a Nurse Care Manager/Health Educator by profession. I have AIP. It is my hope that this AIP blog can act as an information portal that inspires connection making... ending in large scale wellness outcome improvements.
Saturday, September 10, 2011
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.
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AMEN!! and Thank God for answered prayers and His unending care!
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