a new journey

Yesterday, I was walking with a friend and as usually goes, I was standing on my soapbox about … something. Who knows what. If you know me, you know that I get on it quite often. Too often, probably.

He looked at me and said, “You should write a book.”

To which I replied, “Fuck you.”

I really am a kind soul.

He had a point though.

If you’re anything like me, you’re  constantly filled with wonder, with thoughts, with ideas and they spin and they churn and people mistake that for crazy.

I beg to differ.

For instance, as of late, I have had some recent issues with keeping any type of food inside my system. Also, as an added fun layer, I don’t have health insurance. It’s been a over a month since I’ve felt well enough to eat a solid meal and hold it down after.

About two weeks ago, a friend mentioned to me the notion of going gluten-free. I’ve been dairy free for a while now, but gluten-free? Are you kidding me?

One side of my family is Middle Eastern and the other is Italian. I’m talking traditional, lamb, couscous + roasted root vegetables and thyme for Easter and homemade pasta and pasta sauce (literally) for Christmas, complete with wooden spoon beatings for those who didn’t finish. After all, the Matriarch took you all into this world in some form or another – and she could take you out.

I literally bleed gluten. How could my system be revolting now?

But the signs were there, and they can’t be ignored. I am having a hard time eating anything, I’m already lactose intolerant, my face started breaking out (that NEVER happened to me), constant fatigue, deficient immune system, anxiety and panic attacks, weird numbness and tingling (which my doctor told me was lupus and we needed an MRI. Um. OK. Let’s back the imaging train up here. First of all – numbness, not a symptom of lupus. Second of all, MRI is not a diagnostic scan for lupus. This is like saying “well, let’s XRay your ankle for herpes.” Let’s not.)

So, I decided to go gluten-free, dairy-free. And it seemed to be solving most of my woes. This past weekend, I cheated a little bit and had nachos with real cheese.

I. paid. dearly.

More than I ever have. I called my doctor immediately to talk with her about it. I didn’t want to go in, because, say it with me folks “I DON’T HAVE HEALTH INSURANCE.” I just wanted to talk to her about the possibility of living with food allergies, and just to make sure I’m not overlooking anything.

So I first get the nurse, who tells me that I have a treatable disorder until we get to the inevitable insurance question. I mention that I don’t have any, and I just want to talk to my doctor first. I’ve known her for years, she’s treated me through some really incredible, heart-wrenching predicaments. She’s always assured me that even though I didn’t have insurance, she was always available to call.

The nurse told me that the doctor would be sick of diagnosing me over the phone, but reminded me of her ebullient generosity and allow the doctor to see my chart.

The cockles of my heart were never warmer than on that day.

Later, the doctor called me. I could instantly sense two things. First, she was on speaker phone, which meant she was doing about 75 other things while she was talking to me. Second, it was almost 7 pm, which meant that it had been a long day.

“So. What’s wrong?” She asked.

“Uh. Umm … did the nurse talk to you?”

I hate this. Why do we fill out forms, talk to the secretary, talk to the nurse, then the doctor, if I have to explain myself in the EXACT SAME WAY, EVERY FUCKING TIME to EVERY HEALTHCARE PROFESSIONAL? How exactly does this streamline the process?

I digress.

So, I filled her in on the past month, even though I had seen her a week ago. I should add that a week ago, I had been sick with a viral cold that was in my chest and head and was also withdrawing off Effexor. A few weeks before that I had bronchitis.

“OK. So which symptoms were you looking to treat?”

Did she really just say that? Are we only treating symptoms now? And only some of them?

“Well, all of them would be solid … but if I only get to choose one, it would be fabulous if I could keep at least one meal per day down without excruciating pain or vomiting.”

She balked over the phone, and took me off speaker. Must have got her attention? She went through several VERY expensive diagnostic tests she would have to do and I felt tears well up in my eyes. Then, THEN she had the nerve to say:

“Wait a minute, are you still taking your Effexor?”

“No. We went over this last time. I’m off of it.”

“Why, again?”

Every time I go in there, we go through the same question. I DON’T WANT TO BE ON EFFEXOR ANY MORE. The host of reasons include the drug making me more anxious, long term side effects haven’t been studied, liver toxicity is a short term side effect and since we’re speaking about a possibly food allergy that modifies mental health symptoms AND since 90% of serotonin is made in the gut, why am I on a drug that could be possibly harmful and unnecessary?

“Well, with all due respect, we’ve gone over the long in depth reasons several times during our visits. The easy reason would be that I want to and it’s my decision.”

“Well, I think that this is because of stress. Try going back on it for a week and see how you feel. You can always come back off.”

All of my ancestral Arab/Italian rage channeled itself through my veins. If it wasn’t for my friend reminding me earlier that I need to be nice to my phones, or they would keep dying on me, I would have thrown it right through a window.

Effexor is NOT a drug you can just go on and off easily. The half life is 5 hours, which means in 5 hours, half the amount has dissolved in your system. You can measure how addictive a drug is by its half life. Cocaine has a half life of 44 minutes. People start to feel withdrawal effects very quickly from cocaine, and similarly with Effexor.

I politely told her that I would not be going back on Effexor and that I would figure something out.

Then I burst into tears.

I mean, solid, streaming, wailing like a little bitch tears.

For the most part, that is not how I operate. I would have ordinarily invited her to have sex with a speculum and moved on, but her comments struck a chord on a deeper issue. One my roommate and I later discussed.

It is difficult enough for people to be vulnerable. Especially if you are like me and you HATE to be vulnerable. I came to her because I felt miserable and I did not know what to do. I’m not supposed to, I’m not a doctor.

Her attitude was one of frustration because I didn’t have insurance and then indifference because I have already been labeled “crazy,” so any time I am complaining of misery, it must all be in my head.

Thus began my new journey. Last night, I went to a meditation class. I’ll post separately about that. I am about to call a naturopath to discuss my symptoms with him.

I am not crazy. Neither are you. I am sure everyone reading this has had a point in their lives where you had to say fuck the man and do what is right for you.

I’m doing it right now.

I would love to know what that is for you. Tell me your story.


About thinkmore

if i don't let out my thoughts, they stay inside my head. then i have to go to the doctor and they give me more crazy pills. so we're going to try moving in a different direction.
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