Saturday, July 16, 2011

Online Porphyria Support Group... Today's Post

Thank You Lynda & Eileen for sharing your Porphyria experiences!
Your validation has come just when I needed it the most! I have been struggling with my chronic AIP issues for some time now... amen to the fact that people and stress escalate the neurosensory overload! I am at a very difficult point at nursing career has been a huge part of my life... like sand through my fingers I am losing my career... beginning the disability process... it is extremely hard for many reasons... I try with every bit of energy that I have, but I just can't do it anymore... my AIP is triggered easier and easier these days... smells, lighting, motion, the volume, pitch and speed of other people's talking... my body feels as if it is made of lead... I have more and more trouble focusing... remembering details... making connections... the pain in my legs and the random "bee-like stings" is awful (as you know)... I am getting more and more anxious when I am planning to leave home... not because I have a phobia... I have always been social and fun-loving... but because I cannot control the environment and my symptoms will probably worsen no matter how careful I am. It is like living in a bad dream. I try every day to keep a positive mind-set... to look for the little things that make life special... some days are a terrific challenge. I have a husband and twin 8 year old sons... all with ADHD... I am extremely invested in eating right to optimize my health (Gluten Free, Soy Free, Bovine Dairy Free, Organic, Non-Goitergenic, AIP-friendly)... I sauna...I yoga... I use my elliptical exerciser daily when able... I read and research to optimize my wellness... I joined the AIP Clinical Study... I try to gently educate my health care providers when needed... I have had dextrose IV treatments... I have had Panhematin treatments... they usually help with the acute issues but have no lasting effect. To the world outside of my body I look about 20 pounds overweight, tired with dark under eye circles... but otherwise normal... normal... the same as everyone else... they don't understand... they can be condescending and both intentionally and unintentionally hurtful... I appreciate that I am "Preaching to the Choir"... It is so very comforting to know that there are other people who understand what I am talking about... other people who can relate... other people like me. Thank You so very much for being there, for sharing your experiences... and for listening.
Best Wishes~

Wednesday, July 6, 2011

I Pray That God is With Me

Neuropathies (central, autonomic and peripheral): headache, bilateral leg pain (bones/joints), heels like pins

GI: burning nausea

GU: dysuria

Muscular: weak, heavy, poor endurance, fatigued

Psychiatric: cognitive slowing, confusion, memory lapses, restless, irritable, emotionally labile,

Sensory: neuro-sensory hypersensitivity (sound, light, motion, touch), ringing in ears

Pain/Comfort: leg bones radiate with pain, headache through eyes to back of skull, insomnia, restless/ cannot find a comfortable position

Sleep/Rest: see Pain/Comfort

Self-Propelled Disease Management:
Ugh I am so incredibly frustrated! For the life of me I cannot figure out where the "shut off" valve is to my Porphyria... Since my recent hospitalization, complete with IV Dextrose & Four Panhematin Treatments... I came home and over the following week seemed to gradually return to my normal baseline self... I went back to work last Thursday June 30th and my family went out of town for the holiday weekend... the house was calm and was fine... it was a bit of a challenge to make it through all 8 hours of the work day with low endurance... but it was ok...then Friday came and went without too much issue (still a lot of low endurance/ fatigue)... I was off work and home Saturday and Sunday... I knew I should take advantage of the quiet time and rest... but when I looked around the house... well it hadn't had a good cleaning in weeks due to my health... I felt disgusted by the scene and began scrubbing, cleaning, laundering...etc. when I finished everything it was Sunday afternoon! The house looked great but it came with a price... I started feeling a "little cloudy" mentally... I forgot a teapot on the stove and burned out all of the water... I went outside and left the kitchen sink running... when I came back in there was water everywhere!!! I went to bed early Sunday night, but couldn't fall asleep until after midnight with Ativan, Naproxen and Magnesium! Monday July 4th I was late to work...still not feeling "myself" and worked till 2pm... I came home and stayed in for the night... Tuesday I worked 8am to 4:30pm, came home, crawled to the couch and put my feet up... 45 minutes later my family returned home from their trip. It was good to see them, the energy they brought through the front door was bittersweet... I truly had missed them all... but as the night progressed so did the energy, volume and negativity. I could feel my nervous system struggling, firing off like a fireworks display... I gently reminded them that these behavior choices are unhealthy for everyone... they agreed for the "millionth" time and I went to bed at 10pm. I struggled at work today, my co worker's perfume put me over the edge and I finally left for home at about 10:30am... A quiet, dark, cool place to rest works best to counteract my hypersensitive nervous system... a warm, weighted heating pad works best for my leg/ nausea issues. I try so hard to keep a positive outlook... I search for the "meaning"... I try to discover what I can do to change my situation... but today I feel powerless. I pray that God is with me.