Everything You're Afraid to Say

I went in to the job today for work on event that I had my “responsibilities” taken over for because of concerns about my health (those words and others that violate the ADA used, but verbally, one-on-one, with no proof.) An event I’ve worked on since November and is this Thursday. My responsibilities were taken over this past Thursday. I’m still getting emails Saturday morning from the head of the event who apparently didn’t get the memo I’m not lead coordinator. So I spent my Sunday working my ass off. Getting ahead on Monday so no one can say I missed a beat. Be two steps ahead, always. Doing what they think I can’t or won’t do because of my DISABILITIES.

3 of the 4 illness I’m diagnosed with are labeled by the U.S. Government as disabilities. But I can somehow can and do and don’t need disability benefits. So I say no when asked if I’m disabled. Not on government forms. But don’t play me, the ADA or EEOC. Don’t take away work I can and am willing to do because I have to move a little slower. I walk slower because it hurts less, but I’ll sprint if I have to.

Texas strong, Ford tough. I’m a living slogan.

UPDATE (5/8/13): After I went to HR yesterday, my boss tells me today I’m back on the event…which is tomorrow and I’m a week out of the full loop on. I said ok and got up to speed on my duties and will be there early am. Feel like they’re trying to “test me.” Bring it.

I’m back here again. I’ve already lamented about my POTS being on the fritz. Now I’m seeing that I’m tachycardic during seizures again as well. And having at least 5 seizures an hour. And the intractable burning pain that won’t go away but stayed at a 1-2 for several months after staying at a 10 for a WHILE… it’s now living at an 8. Oh well… work tomorrow. Let me say my prayers and get in bed.

G’nite yall.

Fuck chronic illness. I don’t feel like being p.c. about it or uplifting shit. I am not at home in my own body. Dammit man. Fuck Autoimmune Encephalitis and every thing else it’s caused in my body. Could barely walk the past 2 days. My rheumatologist thinks the joint pain I have is really intense nerve pain that seems as though it’s stemming from my joints. My chest hurts because of the muscle spasms during seizures. Those violent, painful seizures are waking me from my sleep. Fuck epilepsy. The blood pressure meds are becoming less effective for my POTS. Fuck Postural Orthostatic Tachycardia Syndrome. I can stand about 10 mins before I feel lightheaded, heart racing. I stayed home today, needless to say. Fuck chronic illness.

My baby girl and I were playing and I dragged her heavy self into my room as she played captive. Later she asked if we could do that again. I said just one of those a day, my body couldn’t handle it. She burst into tears. Hardcore sobbing. She said she was afraid she was going to lose me and didn’t want to leave my side. She begged me to let her miss school so she could come with me to work to make sure I was ok and holding up fine after any seizures. “I’m not going anywhere, puddin’!”

I had to sit and talk with her about prayer, not just what they taught her in private school or children’s church. Pray about your worries and fears too. God is always there to tell those feelings and help take them away. Just like I’m here now. I’m not better just yet, but I’m here and we’re making strides. I also told her don’t listen to everyone telling her to take care of me. She is my kid. She will literally stop being a kid to take care of me. That’s not the life I want for my child. Or anyone around me.

I had to remind myself of this as I told her all of this. It’s just me and her again. The black millennial version of “The Gilmore Girls.” We gotta make it. Ford girls on a mission.

Bumblebees defying all odds.

Hyper-salvation. Vomiting. Coughing. Last time this combo lined up, I had my one and only grand mal seizure within days.

This began again tonight, after a 2 week downward spiral with my illness. I had a full day and a whole Ativan. I was knocked out…for 2 whole hours until I awoke spitting and vomiting.

I had an MRI of my brain earlier today. My documented reaction to contrast dye and my week of an unsettled tummy can probably account for the puke.

My seizures are in “Bride of Chucky” evil mode. The fact that an aura that hadn’t surfaced in several months suddenly returned shouldn’t shock me at this point. (Why this aura that makes my mouth pool with saliva several times a minute, beyond me. Dis.gus.ting.)

I vomited, after spitting into a spit cup prior to and for a few hours before while awake (don’t judge me). Maybe my throat needed to just be cleared.

All of these things immediately spelled “grand mal” and “doom” to me from the one traumatic experience I’d had. I literally was refusing to cough because that’s what I had been doing the last time the grand mal started. As if a cough would stop my brain if that’s what was meant to happen. But it wasn’t. I literally just lived in fear of simple things happening in a specific order. I let my fear keep me from coughing so I could clear my airway. Fear kept me from breathing.

That’s not me. I have this illness but it does not have me. Relax, relate, release. Fear nothing, praise God, hope for everything.

Sharing my story to sleep and maybe help another. Don’t let your fear, no matter how real, stop you from breathing. Take that however you need to. :-)

I’m a cheater. A no-good, two-timing - well… not really.

I’m seeking a second opinion on my autoimmune encephalitis from…Johns Hopkins. I know, don’t look at me, I’m so ashamed! Scrawl a scarlet “Rx” on my chest! I can’t believe I’m looking anywhere else but Mayo Clinic, the doctors who diagnosed me, saved me from the brink! 

But…

Hopkins is #1 in this field, Mayo is #2. Mayo found out what was wrong with me, but they haven’t fixed me yet. And their treatment plan has a next step that is scaring the shit out of my whole family (more on that later). Hopkins might have another idea…maybe.

I’m rationalizing now, but I feel guilty. I am BIG on loyalty. HUGE. And I’m so indebted to Mayo Clinic. I hate even considering other help.

But February 12th marks 7 years of this illness. I don’t want that anniversary to come and go again and still not be any closer to being cured.

I’ve fired many a doctor in my day, without a second thought. This is my first time having a Dr. Side Piece :(

I’m always present.

Everyday there may be a can’t: Maybe it’s I cannot walk. I can’t walk up stairs. I can’t climb up the stairs. I can’t hold a pen to write legibly. I can’t hold a pen period. I can’t hold a spatula to cook dinner. I can’t stand up for more than 10 minutes to cook dinner. I can’t walk around a mall. I can’t roll over in bed. I can’t wake up long enough to do anything productive with my day. I can’t hug my daughter or my boyfriend.

Everyday there might be a long list of can’ts. 

But… I’m always present.

With a literal list of neurological illnesses, that have indeed caused cognitive imparements, (my memory is shitty, my focus is not laser sharp, I am not who I used to be) I am still present during every seizure, during every pain, during every can’t. I am aware of what’s going on around me, even if it is foggy or hazy or painful.

You know that tired ass cliche about how “the present is a gift?” Being present is a gift. One that so many people with my illnesses do not have the fortune of having. I can tell the world what it is to be trapped in a body like this, beyond the tests they run. I live every moment of it. Good, bad and ugly. 

I am present.

A year ago today, I was in the hospital after having a grand mal seizure. I stayed in the hospital for a week, most of which I don’t remember due to medicines and frequent seizures. 

During that hospital stay, doctors informed me that I have epilepsy. Complex partial epilepsy. Also, in addition to the peripheral/autonomic neuropathy I had been diagnosed with 7 months earlier, I had POTS, a severe manifestation of autonomic neuropathy. All of that led to me later finding out that I have autoimmune encephalitis, which can be fatal if untreated or undetected.

I am getting treated for it all now. I’m getting better. I have been dealing with chronic illness since 2006, that was misdiagnosed repeatedly or dismissed by doctors as depression. I went to school, worked jobs, started a business, raised a daughter and tried to live my life to the fullest with a malfunctioning body. 

Things came to a head in May 2011. I was worse than I’d ever been. What I thought was just spells of me feeling bad was really seizures, that I was having every 5 - 10 minutes, all day, non-stop. But with my complex partial seizures, they manifest in ways where you cannot tell I’m seizing unless you know what to look for. I remember on June 2nd or 3rd, 2011 I prayed to God for things to get worse so doctors could see my invisible pain, and then make me better. I went to the urgent care clinic June 2nd. No answers. I went to the ER later that night. The next day, June 3rd, I had a feeling, a sense I needed to go back to the hospital. I waited til after midnight, until I couldn’t wait any more. So my boyfriend took me.

A year ago today, at around 2am, I was in the ER, because I didn’t feel right. I was in pain, but still laughing with my boyfriend, who sat by my side. He shared a Grandma’s mini cookie with me. I began coughing, and then he says I began seizing. I don’t remember, I was unconscious. I had my first and only grand mal seizure in front of doctors and nurses. They knew then that something was really wrong.

A year ago today, I had a grand mal seizure that led to diagnoses that devastated me, changed my life forever…and saved it.

Today, I’m alive. I’m getting better.

Be grateful for each day you have, and the health and good graces God has blessed you with.

Headed back to Mayo Clinic in the morning. Flight leaves in 4 hours. 1st time I went, the right side of my body became paralyzed for 3 days. 2nd trip, they misdiagnosed me with brain cancer. I’m claiming in the name of Jesus, Moses and the whole New Testament that I will go this time and get some “you’re all better” type of news. Pray for me folks.