It’s taken me over a week to write this blog post. I’ve had it in my head in various incarnations and snippets of thought and emotion, but getting it from my head onto the screen was proving quite difficult. I started writing it several times, but couldn’t ever get into the flow. Then, at like four in the morning, I’d be lying in bed, writhing in sciatic pain, and the words were flowing inside, but I couldn’t bring myself to sit up and pound them out. I don’t know that today is any different than those other days — maybe I’ll finish, maybe I won’t — but here goes.

***

Under the best of circumstances, I would not have wanted to leave the cool air conditioning of the vehicle for the over-100-degree temperatures of the outside. But there we were, pulling up in front of the little brick building for the doctor’s office in Galveston, a quaint little island town, and these were not the best of circumstances. I had and oxygen cannula shoved up my nose, attached to a hose that ran from the front seat to the back floorboard where a rented oxygen canister, about four feet tall, sat on the floorboard, feeding life-giving, breath-affirming oxygen into my lungs so I could manage to keep my saturation level above 90. Organ failure, they say, can begin as early as 92… I regularly am in the 80s. That’s enough to scare anyone. But here I was, needing to move from the comfort of the inside to the outside, settle into the wheelchair Lynn was opening for me, and then manage to situate the oxygen and the tubing and my fat ass and all the other stuff necessary to get from the car to the inside of the building for the doctor’s appointment for which we were already almost twenty minutes late.

Sigh. It had been a long morning.

So I turn my dull legs and let them fall down to the curb, test them to make sure they will hold my weight, and then I look up and see the writing on the window of the doctor’s office: Botox, Facial Peels, Sclerotherapy, Lipo-Ex.

Lovely.

The doctor I’m going to, the one who is supposed to be this awesome coordinator of care, runs a cosmetic adjunct to her practice. Liposuction and smooth, younger skin are the least of my worries at this point.

So Lynn helps me get the oxygen cannula off and around the door, so the tank can be removed. We’re about halfway through the process, when a skinny woman in a short skirt comes out, barely opening the front doors to the clinic lest she come out in the heat and melt into a puddle, and says, “You know, there’s a ramp at the back of the building.

Well, no, I did not know that. Isn’t that special? A ramp. For handicapped people. For people in wheelchairs. A ramp, yes, indeedy, and a DOCTOR’S office. Uh huh. In the back of the building. Because, of course, all handicapped people automatically know to head to the back of the building, right? Heaven forbid a botox clinic see someone in a wheelchair coming in the front door!

Now, at this point, I was already exhausted, so I’m sure I’m taking this a lot harder than I have to take it, but I said to Lynn, “I can make it. It’s only four little steps. I can do this.”

“Are you sure?”

“Uh huh.”

The lady at the door said, “Okay… then slinked back inside where the air conditioning was, making no effort whatsoever to assist, though she saw Lynn with the backpack, the hose, the cannula, the wheelchair she was trying to open at the top of the steps for me, and the oxygen tank I was trying to roll along on the ground. What would YOU have done? Wouldn’t you have offered to help?

So Lynn finally gets the chair open and locks it. I hobble up on my feet, my leg aching something fierce, and I take the first couple of tentative steps toward the railing. I make it to the bottom of the stairs, slightly hunched over, and grab on to the rail that goes up the center of the steps. Thank goodness the rail is there. Now, the hard part.

Step Number One: Heave the leg up, let it land on the rock-covered step.

There’s no way you’re going to make this. Look up, see yourself in that window. Look what you look like. That’s what other people see. Inside that office, there are skinny people, beautiful, skinny, young people who are coming there to get prettier. You, you are not a skinny young person. You really don’t want to walk inside this office.

Step Number Two: I pull myself up with my hands on the rail, and I place the same foot I placed on step number one up on step number to. I know it will hold me. I’m not sure about the other foot though, so I heave it up, and grab the rail again, and the second step is conquered.

Ah, now you can see there ARE beautiful people in the lobby waiting. See them all glancing up and watching you, like they are trying not to see you, but they can’t help it. Oh, if they only knew. Just think what they’re thinking about you. They see a fat slob, someone who didn’t take care of herself, who ate too much, who played too much, someone who could just turn her entire world around if she’d just lose a little weight and get a little botox. They don’t see how you used to look, how you used to feel. They’re probably wondering what a woman like you is doing at a cosmetic clinic. How could you possibly want cosmetic treatment; don’t you see yourself? They think you’re crazy. Yes, they do.

Step Number Three: The same foot that hit steps one and two tackles number three, lifting it up ever so slightly, because it’s starting to throb with a severe intensity–which is one of the reasons we’re going to the doctor anyway–I think I broke my foot. Ouch. But I finally manage to pull myself up. I’m feeling a little bit proud of myself at this point. I made it almost all the way there. Lynn is now waiting at the top of the steps for me, with the wheelchair and bag and all the peripheral stuff. I’m breathing through my nose, out through my mouth, and I just might make it up these steps afterall.

What are you, Mary Freaking Tyler Moore… she’s gonna make it afterallllllll…. alllllll! Whoohoo, so you walked up some fucking steps. Big fucking deal. Those gorgeous women inside are sitting around after having watercress finger sandwiches for lunch that they then puked up and are waiting to make themselves gorgeous so they can go out and get laid or get paid or whatever it is the good-looking people these days do. You wouldn’t know anything about that. Here you are all excited to make it up a couple of steps. Isn’t it funny how perspectives change? Look how much you’ve given up. Look how much you’ve lost.

Step Number Four: Look How Much I’ve Lost

Step number four was easy, pulling up and standing on the rail. I’m out of breath. I’m wheezing. The oxygen is low, checking the pulse ox, 87. Hey, that’s not as bad as I thought it would be. I plopped myself down into the wheelchair, put the oxygen canister in front of me and sat and watched the sats go up on the pulse ox. I tried not to turn and look at myself in the mirrored reflections of the window, but it was hard not to.

By now, sweat is pouring off my body, rivulets of it damping my hair, causing those little curly wisps of redness to pop out at weird angles. My shirt, soaked, leaving damp and darkened splotches. I had expected I would be examined, and might be sent for x-ray or CT, and I had also expected I might be hospitalized, so I had not worn a bra, had worn a baggy, comfortable shirt, and baggy, comfortable cotton capri pants. My feet, however, were so swollen, I could not put on a single pair of shoes I owned. So instead, I wore my red fuzzy slippers. They were the only thing I could use. My purple shirt, black capris, and red fuzzy slippers, with my hair pulled up in a severe bun, excluding the wispy, sweaty strands, and the sweat. Don’t forget the sweat. Throw all of that, with the severe edema of my feet, the redness of my face, and fatness of my body, into a folding wheelchair, stick a nasal cannula up my nose, throw an ugly green oxygen tank into the mix, and I’m the freaking picture of beauty and elegance and grace while I’m being pushed to the front door of this botox clinic.

At the last minute, one of the skinny cosmetic surgery patients waiting in the lobby came and held the door open for Lynn while she attempted to push me through it. It was our first time out with oxygen tanks, so we weren’t quite coordinating the rolling oxygen wheelie thing with the wheelchair and all the peripherals, which resulted in Lynn almost dumping me face first into the lobby of the doctor’s office. But we finally did manage to make it in the door. Two glances around and I hadn’t felt so self-conscious in years.

And wouldn’t you know it, the furniture in the waiting room? Ikea. Yup. Tiny little paper thin, pencil sized Ikea mix and match furniture. On one side of the tiny lobby there were small chairs, made for small rear ends in small skirts. On the other side, two small Ikea couches, and smack in the aisle of the two, with no room for anyone to move around or by, was my wheelchair, taking up the entire space. I whisper to Lynn, “Put me between those couches, fast….”

I put my head down and try not to look at anyone or anything, but by the time I settle down, the sweat starts to pour off of me even more.

You should have just stayed home.

I should have just stayed home.

We get in to see the new doc pretty fast, which impressed me. The nurse took stats, and she asked about meds, and I filled out forms. Then the doc came and got me, and we went to another room. I’ve come to the conclusion that doctor’s offices must never see patients in wheelchairs, because they are notoriously bad at not being wheelchair accessible. You’d think dotor’s offices would be best equipped for these things, but it’s just not true in my experience. Even the clinic inside the hospital itself was bad. The hospital though is set up nice for wheelchairs; just the clinic in it was bad.

Anyway, the doctor spends about two hours total with me, talking about symptoms and history and asking questions and making notes. We show her lab results that she says we can give them up front to scan into my chart. She seems caring. She seems interested. She asks what we hope to accomplish and why we were coming to her. We tell her she was referred to us by Dr. H, and she was happy to hear that. Then she says she wants to refer me to, “An endocrinologist, a pulmonologist and a weight management clinic.”

I just started to cry at that point.

You’d have to understand the bias I have faced in the past to truly understand why the referral to a weight management clinic made me cry. I’m not sick because I’m fat. I’m fat because I’m sick. When they get the meds working right, every time, I lose weight. When the meds get screwed up, the weight comes on again – in water weight – in spades. I can document losing and gaining 30-70 pounds in a matter of days. I’m not diabetic. I have perfect cholesterol and all other heart panels. My diet is low-carb, moderate protein, everything documented, carefully planned. I don’t cheat. I know how to lose weight. I know all the right things to do. I am coming to a doctor to help me get well. I am paying through the ass for these services, and she wants me to go to a weight management clinic, that even insurance won’t pay for if I had it, right after I tell her that I’m self-pay and we’re trying to be as frugal about this as we can while still benefiting my health.

She says, “Well, it’s about… you know, uhm, hormones, and stuff… like… uhm, Leptin and….” and her voice just fades as she looks at me with the tears streaming down my face.

Years ago, when I first started seeking a diagnosis for what was going on with me, the first subtle symptoms were an inability to lose weight and a fairly rapid weight gain, without any change in habits or diet. Then I changed my habits and diet for the better, and the weight still kept coming on. Then the edema, and the fluid retention added more weight. I saw doctors. They all said I was just getting to middle age, would have to work harder. So I did, but it never did any good. They accused me of cheating on my diet. They accused me of lying about what I ate. They said I just needed to get up and move more, walk around the block. I did all those things.

So to have her say this, at this point, on that day… it deflated me. I so needed her to understand. She didn’t. She did understand enough not to push the issue, though.

This was over a week ago. She did put in orders for me to have my foot x-rayed and my chest x-rayed, which we had done. Then she did a UA, which came out, apparently, normal, though I still have no idea what it was testing for. It’s been over a week ago, and we had to call to get the results. Then we called to check the status on the referrals. Nothing. We were told yesterday we’d hear something by today. Nothing.

We find out from the medical supply place that provides my oxygen that one of the doctors is out of the office all this month. The other one hasn’t called either. You read my last blog post where I said I tried to make the appointments myself but they referred me to financial counseling instead. I don’t owe them any money. I don’t owe anyone any money and I shouldn’t have to talk to a financial counselor in order to get medical treatment that I’m willing to pay for at the time of the treatment.

So when the consultation with the doctor was over, I was still in tears. I asked her, “We were told by my PA if my pulse was over 120 consistently, I should go to the ER. My pulse is staying over 120, consistently. We were kind of hoping maybe we could do something about that… because when I get up and move around, it goes even higher…” She leaves the room and calls the cardiologist right away, and they talk about something, then she calls in a prescription for me. Then we go to the bathroom to do the UA, then come up to the front, and we get the orders for the x-rays, get the script called in, and she says, “I’ll see you back in a month.”

I say something along the lines of, “What am I supposed to do in the meantime? I can barely lift my head up some days, I can’t even walk twenty steps into the bathroom without almost passing out, I can’t breathe most of the time and am on high-flow oxygen 24/7. I can’t sleep. I can’t eat…. what am I supposed to do?”

She says, “It must be incredibly difficult for you…”

She’s sending you home to die. You’re someone else’s problem, and she’s just referring you out and sending you home to die.

“Oh, do shut up!” I scream in my head to that little voice that has been nagging at me all day long, whispering all its nastiness at me.

But I can’t help but feel the same way: They all just throw a pill at me, refer me to someone else, and send me home to die.

And there is one really big, huge problem with that: I don’t want to die.

But I also don’t want to live like this.

And I don’t know why I can’t find anyone who will really help me, who will take the time to sit down, look at all the evidence, read all the reports, ask the questions and find the answers.

I’ve been diagnosed with so many different things, I don’t know if I’m coming or going. I’ve been given so many medications, I can’t even remember which ones go to what. I get better, I get worse, I feel good for a while, then bad. I’m willing to do whatever it takes to get better, no matter how hard it is, no matter what work I have to do, no matter how much it will cost – I just need someone, anyone, to actually tell me what it is I need to do.

I’m tired. I’m scared. No, scratch that. I’m terrified. I cannot even roll over in bed, from one side to the other, without my pulse racing to 120 plus and my sats dropping into the 80s. I cannot stand up on my own anymore, without almost falling over. My legs tremble so badly with every step I take that I can’t trust them. I have strength, but it’s like they won’t do what I tell them to. I sweat all the time, pouring sweat, so bad that the bed and my clothing is soaked in it and sometimes I have to change in the middle of the night. There is fluid retention so severe I slosh when I walk and no one can tell me where it’s coming from or why. When I walk, just move from the bed to the bathroom, my pulse hits 150 plus, and my sats drop. I gasp for air. Some days, I cannot hold my head up. Other days, I can barely keep my eyes open. My short-term memory is shot, long term memory isn’t doing much better. My eyes leak fluid all day, salty, burning fluid, all day – not tears, literally salty, burning fluid. My nose bleeds, a lot sometimes. I can barely eat anything, and barely keep anything down, but my weight isn’t falling off of me from it. I have bruises all up and down my legs and arms, and we don’t know where they come from. My legs seep fluid and weep if they get the slightest gashes. My blood pressure is all over the place, depending on my positions.

I hurt. Everywhere. All the time. All over.

And I whine a lot… at least, recently, I have been.

Because I’m tired.

And I don’t know what to do anymore. I’ve done everything I know to do. I’m out of options.

And I can’t help but feel I’m running out of time. What do you do when they don’t know what to do with you? How much more abuse can my body take before the next time there is no next time? How more broken will I have to be before someone reaches out and says, “Let’s find out what’s going on with you?”

So yeah, I know as many of you are telling me that going into the hospital is my next step, but I can’t do that if I can’t freaking get the hospital to take me. UTMB won’t take me without going through financial counseling, and then they will probably just set me up to go to one of their clinics, stabilize and refer. We’re blowing through life savings here. We’re putting everything we have into saving me, and we don’t even know if I can be saved.

So it’s with tears streaming down my face again tonight that I write this post. You know, it was supposed to be funny. I had a whole plan in mind when I started typing this up and it was hilarious. But that’s not the turn this took and for that I am sorry. Maybe I’ll get around to the funny one at some point in the near future. I guess I just had more pent up inside of me than I thought I did.

It’s always harder in the evenings. Don’t know why, but I always do worse in the evenings. Maybe I should reserve my blog writing for early mornings. I seem to do better then.

Anyway, if you’re still with me, thanks for listening… I guess I just needed to purge.

On another note, please don’t listen to that little voice inside my head. She doesn’t talk to me like that very often, so I don’t listen to her much when she does. Some days, I promise, she’s really nice to me.

Love and stuff,
Michy