Sunday, September 25, 2016
This evening a stranger, soon to be friend, sent me a message on Facebook from the other side of the world. A warrior mom like me, who had read this blog, found me on Facebook, and reached out to forge a connection. Connections. The stuff of life. Who are we by ourselves? In isolation we feel less. Less joy, less love, less connected, floating along from moment to moment doing what needs to be done. Less is how I have lived for the last two months. Then, suddenly a connection to a woman I know all too well despite the fact that I just met her in the few lines of her message this evening. Again I am reminded that I am not alone.
Disconnecting
For two months I've been disconnecting, smiling politely, painfully participating in small talk. Aching to get the gloom out in to the open, to vomit it out everywhere until there is nothing left to expel. In those moments I would prefer to feel empty than carry this weight in the pit of my stomach and in every pulsing cell of my heart. In a world I suddenly, again, don't belong to I am silenced by the questions I know I won't be able to answer. This invisible monster that has taken up residence inside my child again, robbing her, making her feel different, taking so many moments of her childhood away. I can not answer their questions.
This is not something you can think. This slipping away of your child. It is not "just" sensory and scratchy pants. It is not "just" a meltdown about going to bed. It is not "just" anxiety about school. It is not "just" shyness and something she will outgrow. It is not "JUST" anything. It is huge and ugly and not anything you have experienced if you have a healthy typical child. Yes, even if your child gives you a hard time about sleeping, or climbs in to bed with you when she has a nightmare, even if she doesn't like jeans, tantrums about taking a bath, and won't eat anything but macaroni and cheese. That is NOT what this is. Sadly. How I wish it was just that.
Return of the Invisible Monster
It began in July after the girls had a case of Hand-Foot-Mouth, otherwise known as the Coxsackie virus. A typical childhood virus that is typically endured without much afterthought. At the first sign of illness I held my breath and watched for symptoms. After a few days the coast was clear and I let my guard down. Only looking back more than a month later did I realize the sensory symptoms had started to creep in within two weeks of the illness. At first I simply did what we had learned to do. The things I wrote in my previous hopeful post about sleep, baths, supplements, and rest. One week turned to three and suddenly we were a month out, seeing symptoms increase instead of decrease. A call to our doctor had us change the prophylactic antibiotic from twice weekly to daily. This would surely help except it did not. Shit. Worsening symptoms spiraled us in to the worst flare we've had since onset. Sensory at an all time high, raging, yelling, crying for an hour at a time, unable to fall asleep or stay asleep, nightmares, big fears, racing thoughts, and fixating on things being "just so".
Agitation on high and emotions running wild and all happening within the walls of our cute cute little yellow ranch, on this cute cute little street, in this cute cute little town full of friends and people who never see a damn thing. Invisible. Living in an invisible cell that keeps me from walking freely with the muggles. They can't see in and who would want to, really? Visiting hours occur when we are outside of the walls of our home. People approach, smile and ask how we are doing. It is an impossible question to answer in one short visitation so I politely smile back and walk on. They can not see that we are trapped and there is nothing to be done but keep trying, one medication after another, step by step through the painfully slow treatment plans, not knowing if the current med is helping at all or if the next med just may be the sweet key of release. Sometimes I hate visitation for the normalcy it reminds me we have lost.
Drawn back in to a world I never wanted to visit again, in the dark cool dampness of PANS, watching my daughter sink deeper and deeper, straining to get ahead of her and lift her up, as she continues to slip through my fingers. Sinking. That is what a "relapse" feels like. It is terrifying because we know where it can lead. We know the dark abyss she is slipping into and it does not have a bottom. We can only grasp at whatever tools we have to scoop her out before she goes too far. We don't know what tools will reach her so we just keep trying. We don't know how long it will take or how bad it will get and I miss her terribly.
The Blog No One Reads
It has been two months since my last blog post and I have been thinking about writing. I originally created this blog because I needed to describe our incredible journey. Incredibly difficult. Incredibly painful. Incredibly diabolical PANS. Incredibly miraculous healing. My incredible child returned to me. I needed to document our struggle and recovery to make it real and keep it alive. This blog is public but I had only shared it with two people whom I hardly knew because they needed help. It didn't occur to me that anyone was reading these posts so for the last two months, with little energy to spare, I stayed away. Until tonight. A stranger, soon-to-be friend, messaged me about her daughter, seven years old with a younger sister, similar ages as my girls, with similar names (seriously both names the same except for one letter), similar symptoms, and similar struggles across the ocean blue. Connection.
Gasping in Thin Air
So here I am, sharing my pain and telling you that it is not an easy road to recovery. Sometimes hope must be manufactured out of desperation and thin air. At the end of July we started daily Azithromycin and watched symptoms worsen for three weeks. We then spent four weeks on Cefdinir, adding a few other supplements to heal the gut, watching symptoms worsen. That blood work I had been waiting for back in July showed a doubling ANA number once again. Inflammation and symptoms are rising and we don't know why.
This flare. God I hate the word now. FLARE! It's a FLARE! She's in a flare! How often I've yelled those words at my husband when he is at his wit's end with her "behavior". It's a medical condition but it's so personal it pushes every parenting button you've got. Not to mention the sibling buttons as little sis further torments her as a way of coping, maybe payback, likely both. It's just awfully hard. Especially for the child whose body is raging out of control. "Brain on fire" they say and for us, I would add "skin on fire" too. And this time it all seemed to slam down on me out of thin air.
There were several moments today, and in most days lately, when I felt as though I am gasping for emotional breath. Gasping for strength. Tonight, my hands, one on her heart and one on her head, as she fell asleep clutching my arm with nightmare thoughts torturing her. "I am right here. Everything will be okay." is all I could whisper. My head drops and my soul seeks strength from anywhere, and out of thin air it comes. Tomorrow will be better. I press on.
With strength, hope and love,
Resources: Please feel free to leave a message if you have any questions about my blog or the resources listed below. I will do my best to share what I know.
www.pandasnetwork.org "PANDAS Network"
www.nepans.org "New England PANS PANDAS Association
Facebook Support Groups: Search for group and request to join
PANDAS PARENTS
PANDAS/PANS/Lyme/Tick-Borne Diseases
Parents of Kids with PANDAS/PITAND/PANS
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