Sunday, January 12, 2014
I've felt called to a quietness of late. Not writing here has been good for me. I realized last night when I posted a facebook status about my horrible mast cell attack there is still such a caring group of friends who love me personally and are continuing to pray and offer support no matter how long this road. I am so grateful for you. I know there are also many in my circle who are walking through similar struggles and want to find anyone at all who can relate and understand. This is a better place than social media to try to share the gruesome details. I will try to document as closely as possible what happened. What I describe is not something unusual for me but the severity of the episode made it more frightening and leaves me weak and wondering today.
I had a relatively good day yesterday. I had a very sick week for a few reasons, but I woke feeling stronger and less sick to my stomach. I did not have a headache and because I'm still taking steroids my joints were doing well. I didn't risk this improvement by planning to go anywhere. Delaney was having a friend over to spend the night. Dan was working on projects at home. Danica was playing. I spent time reading and wrote some. I tidied up the house. I was not feeling particularly anxious or overstimulated. Dan did a lovely thing by painting the one photo gallery wall in our living room a textured robin's egg blue color. He did it to cheer me up. I spend hours in the living room each day, and I so wanted a hint of the hope of spring. I have been wrestling with depression. This is an Ohio January thing made worse by my being home bound most of the time and the layer of physical pain and chronic health issues I live with. I manage my depression by understanding it. I take it to God daily. I also take medication, see a wonderful counselor who helps me with behavioral responses and cling to the good in my life. I was actively doing this yesterday. If you read my earlier facebook post I was literally overflowing with gratitude for our home and the peace we have here. I do think the paint, which didn't bother me greatly but did cause me to move into my room with the door shut, began to cause an early histamine response laying the groundwork for the later event.
Innocently enough my husband had gone to the store earlier and chosen a different laundry detergent than usual. Laundry has been a trigger for me for years. I cannot tolerate chlorine bleach smell or floral dryer sheets or any of the mountain spring scents they add to almost everything. I NEED FREE AND CLEAR. PERIOD. Dan sniffed this and thought it was "fresh" and wouldn't be a problem. Around 4:45 pm he began a load, and I had walked over to the laundry room for some reason. I saw the red bottle. He tried to explain his reasoning for buying it. He took the cap off, and it happened. I smelled it. It rushed to my brain instantly. I began to rant and rave about how it had to go. I needed it out of the house immediately. He couldn't use it. He tossed it in the trash can there, but the lid wasn't screwed on correctly and detergent spilled in my basket and all over. I could feel the fever response rush up my body and my face become so hot and red. It was in my nose and in my head now. My throat closed up. My heart was pounding. I was shouting at him. I rushed to the front closet, threw on my boots and gloves and a scarf and set out in the neighborhood in the dark. I was crying and walking faster than I've walked in years. I kept trying to breathe in fresh air. The further I got from our house the more afraid I felt. I could feel the paralyzing weakness coming on. This always happens. I pushed my muscles to make it home. I went in my room and locked the door, swallowed a benadryl and put earbuds in with my "demon" fighting music playing and my head between pillows. My body froze and tears just kept rolling down my face until my pillow was soaked. Racing thoughts of anger and shame and fear flooded me. "My husband deserves a healthy wife. He must hate me. He must hate his life because of me. My girls will only remember me like this. My daughter's friend shouldn't know about this. What if I never get any better? Why even live if everything is making me this sick. I don't want to live like this. God, I don't want to live like this. Why have you brought me this far to leave me like this?"
After a good 40 minutes between the pillows with voices in my head and specific thoughts about wanting to die the second phase of physical illness took hold. I was going to be sick. I made my way into the bathroom and the chemicals had loosed my gastrointestinal tract into a full on release of anything and everything normally moving through. I glimpsed myself in the mirror and more self loathing took hold. My eyes were wildly dilated. My face was bright red and blotchy and on fire. My mouth moving silent words over and over. My chant. "God, help me. God, I'm so sick. God help me." Back and forth from the bathroom to my bed like a wrung out washcloth I collapsed feeling the worst had passed. I could literally barely move my body it was so weak. Dan came in. He was sorry. It's the worst part when someone says that. He knows it is real. He's seen it too many times. It just sucks. What is there left to do? I sobbed and sobbed. Everything I had hoped and planned for this year seemed lost in this week and the attack was the nail in coffin.
For those of you who don't know what mast cells are I will share just a tiny description of what this disorder involves. In my case it is one of a group of disorders that all intertwine creating havoc on an already broken system. Once I have an attack then I am more and more prone to greater ones. The Mayo Clinic describes systemic mastocytosis (mas-to-sy-TOE-sis) as a disorder caused by a genetic mutation that results in an excessive number of mast cells in your body. Mast cells normally help protect you from disease and aid in wound healing by releasing substances such as histamine and leukotrienes. But if you have systemic mastocytosis, excess mast cells can build up in your skin, around blood vessels, in your respiratory, gastrointestinal and urinary tracts, or in reproductive organs. When triggered, these mast cells release substances that can overwhelm your body and result in symptoms such as facial flushing, itching, a rapid heartbeat, abdominal cramps, lightheadedness or even loss of consciousness. In just the past week and a half I have had horrible reactions to someone's perfume at the hospital, my husband's deoderant that he has worn for months but after my histamine levels had been raised from another trigger made this substance cause me to react and then the detergent. I will be in a holding pattern now trying to avoid anything else that could push me to anaphylaxis. I am so weak today. I am so sick. I feel stoned. Writing this has taken me hours because my head just isn't working. I can't seem to get words to go together right. I am despondent.
This is my life. There are no January resolutions or vision boards or hopeful verses that change the reality of this body. It rages against all my best efforts to find some treatment or care to move me beyond these episodes. My surgeries have helped me oh so much. Still, I face these mountains. I've had news from my extensive bloodwork ordered by the neurologist in New Jersey regarding PANS/PANDAS. I have another call with him on Thursday to consider treatment options for the infections living inside me. I know these mast cell issues are all tied up in my genetics, my immune system and every intricate part of my body. I believe only my Creator sees the whole and understands every part. He sees me as more than flesh and blood. He formed me in secret when there was none of me. Do I trust this now? As I beg and plead for some release from my suffering and just a chance to step back into the real world from this prison, I have to trust this now more than ever. He has written all my days. Do I believe He is good? Do I rest in this goodness even when it seems so unclear?
My dear Christa Wells sings a song about God as our one defense. I listened to it over and over as I laid here wracked with sadness and fear last night.
And I don't know how to climb out of this valley
I don't want to go back where I've been
But every time, you've laid yourself beside me
Your love my one defense
You are my defense...
My verse for this year is Psalm 91:4,
He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.
Resting beneath the feathers of His faithfulness today and ever hoping.
Posted by Monica Kaye at 3:31 PM