Every love begins with a lot of hope, every love begins encased in gold
Oh you never fear what you never know will be
I remember times when you took my hand
You might as well of taken my every breath
I never felt a moment of regret till now

I’ve spent three weeks not wanting to write this post. I’ve spent hours attempting to figure out how to process the latest conversation with my doctor.

Today, this post, should be about how my cookbook recipes are mostly finished, and that I am ready to roll out the awesome. The thing is that is so far from the truth. Since my last blog post when I was hopeful and happy for my cookbook and that I had survived the winter’s risks to my health much has changed.

I am keenly aware, in each breath, of my regrets – the very few I live with and the ones I fear I might die with. I am not quite ready to go quietly into the dark night. I have stories yet to tell.

Cause I don’t wanna say what I’m gonna say
I don’t wanna say what I’m gonna say
I don’t wanna say what I’m gonna say, but I’m gonna say it anyway

As February faded so did my appetite. I became increasingly nauseated until my ability to eat, or even smell, food became pretty dicey. I was living on rice and bland vegetables. Eventually just water started making my nauseous.

On the 28th I woke up and felt lightheaded and unwell immediately. I finally went to the ER where they gave me fluids and a hard time, until my labs came back wonky, but with no indication of dehydration. With a perplexed shrug, a singular question about gastroparesis, and “good luck” the doc told me to follow up with my GP. “Maybe he can figure it out…”

Monday afternoon I saw my GP, Kirk, in an afternoon appointment. We chatted before he examined me. And then he said words you don’t really want doctors to say, “Can you FEEL THAT?!!”

“Feel what?”

“Your heart! It has to be over 150… I can’t count that fast.”

“That would certainly explain the dizziness,” I said, probably much too calmly for someone who’s doctor has started exclaiming things about vtach & IV meds and has a condition with a high risk of vascular complications.

After an EKG that came back at 80bpm & totally normal 5 minutes later, a great deal of puzzlement, followed by some group WTF discussion I agreed to Kirk’s gentle suggestion that I “could stay for observation and get [my] fluids topped off” and see how I was in the morning.

In the morning? I was, as it turns out, not dehydrated. Well, at least, not until the cardiologist was asked. But who do you believe? The labs or the cardiologist who diagnosed me without examining me? The resident who did examine me came back around, asking more questions. Seems he wasn’t so sure. Oh doctors!

I left Thursday, after a ultrasound and upper GI series, because Kirk didn’t want me catching anything because then I “would never leave.”

My discharge instructions? “Go home, rest, pray like hell it gets better.”

If I could have been where I thought I’d be
If I took the time to make believe, been a piece of what you saw in me, in me
Then maybe both of us would find our way to a place where nothing’s ever changed
To a place where nothing ever fades, always

Kirk has been my primary care doctor for seven years. I like him. I think, most of the time, he likes me. That makes our relationship easier. We respect each other, which is really important. He gives me instructions, I follow them. I tell him what’s going on, he believes me. We work together on this disaster called my “health.”

I worry though, that I’m that patient he worries about at night, that he prays he won’t get a notification about in the morning, or wishes he had something -anything – more he could do for me. I’ve watched him in the last 9-10 months and the sadness when he looks at me has shifted… it has become fear. It’s disquieting.

Our post hospital follow up was probably one of the sadder appointments for us both:

“Hey! I’m not even going to ask how you feel since it’s about the same.”

“Well, now I have this new facial numbness. That’s interesting at least.”

“Oh you’re always that.”

He poked me, we decided it was really fine not to worry about, either a migraine or “it may just be mystery pasasthesia, we’ve had that before.” All I could do was chuckle, yes, doc, we have.

He sat on his rolling stool, scanned my meds and latest labs, then did the thing I truly fear. He sighed.

Oh I don’t wanna say what I’m gonna say
I don’t wanna say what I’m gonna say
I don’t wanna say what I’m gonna say, but I’m gonna say it anyway

“Are you trying for Medicaid again?”

“I am, I have a disability lawyer helping me this time, so it should go through-”

“Do you think it will come through in the next six months?” he asks, as he looks down and kind of sets his papers down with a tired frustration.

“…I hope so…”

“We need to get you to more specialists.”

There sits on the room a very pregnant pause, me looking anywhere but at Kirk, Kirk looking sort of at my shoes, so I swallow and figure it’s better to know and stop worrying. I’m probably blowing things put of proportion anyway.

“Can I ask? I mean, lately I’ve been getting the feeling that – that I’m running out of time.”

“I agree.”

“You mean, I’m not catastrophizing? Things are as bad as they seem?”

A nod from the other corner confirms that, on this point, I am not crazy. I have never been so disappointed.

I don’t clearly remember the next bit, but I tuned back in thirty seconds later to engage in a discussion about mitochondrial specialists, EDS specialists, Mayo Clinic & Boston. Then we got back to the point:

“If I was sitting where you are I would have come to two conclusions: I’m running out time and I need to find treatment really soon. Essentially, you need to find a specialist who can diagnose and treat you in the next six or so months. I worry that even if you find a doctor who can accurately diagnosis all of what is going on, there isn’t going to be a treatment. I hope there is…” Yet, I could hear the silent “but most of what you have isn’t treatable.”

If you say sometimes things aren’t meant to be then, I gotta go with what I feel
I gotta go with what is meant for me

Essentially my body is cascading into some kind of failure. My allergies, my GI issues, and I’m having extremely odd labs – vitamins & minerals coming back swinging vastly within a week for no discernible reason. My not new, but much worsened, postural orthostatic tachycardia. Some of this is normal EDS issues. Some of it is possible complications with my other comorbid disease states.

The ‘what is what?’ question is not mine to decide though. It really needs to be sorted though. And in terms of medical “time,” it seems I need to do it fast.

My gastroenterologist is doing what he can, and my immunologist agrees with my GP that I should start seeking help in far away lands. I can’t wait to tell my psychologist next week. I’m glad my immune system is strong enough I can return to therapy; I need it.

Oh I don’t wanna say what I’m gonna say
I don’t wanna say what I’m gonna say
I don’t wanna say what I’m gonna say, but I’m gonna say it anyway

Those close to me have primarily responded with “I kind of expected this.” Followed by some funny conversations about what other horrible things they had wished for instead. Human emotion is a crazy creature.

I have put together a caring bridge & so that those who want regular updates on the day-to-day details can keep up with things there.

For the many people who have asked “how can I help?” I have started the linked support planner. That’s a great way to help if you’re local or you want to be involved over the longer term.

Other things that will really help? Do you know doctors who specialize in rare diseases? Genetic disorders? Are you familiar with navigating particular medical systems?

Mayo Clinic is being looked at again as I now have a diagnosis that should be accepted by their charity plan. Boston is next on the list because of the quality of care & research happening there, plus I have a support system there.

I am looking at the EDNF conference in August, though I pray to see someone before that, where I could possibly see a EDS specialist and see what things we can rule out as EDS vs other things.

All of this will take paperwork, patience, and money to make happen. Friends have talked about fundraising when I was ready to start taking the steps forward. I will let you know when they set that up, if you wish to help that way.

I’m still struggling with eating, barely making it out of bed most days, today my back locked up when I tried to sit up. My body is cooperative about one day a week and today was not it. I miss the outside world. I miss being able to eat a meal. I miss being able to stand up for more then 3 minutes.

I appreciate everyone’s support and love as I have struggled through the last seven weeks, and especially through the last three where I have been vaguely a wreck while processing and telling my family & close friends first. I have not felt alone. I have felt loved, supported, and cared for. Thank you.

You all have helped me get this far. I know that no matter what comes, many of you will be with me as I move towards it. I will not be alone.

Song lyrics above are from Rosi Golan’s Say It Anyway. It’s been trapped in my head as I told friends and family.

As always you can keep up on things over on my twitter.