It\u2019s taken me over a week to write this blog post. I\u2019ve 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\u2019t ever get into the flow. Then, at like four in the morning, I\u2019d be lying in bed, writhing in sciatic pain, and the words were flowing inside, but I couldn\u2019t bring myself to sit up and pound them out. I don\u2019t know that today is any different than those other days \u2014 maybe I\u2019ll finish, maybe I won\u2019t \u2014 but here goes.<\/p>\n
***<\/span><\/p>\n 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\u2019s 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\u2026 I regularly am in the 80s. That\u2019s 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\u2019s appointment for which we were already almost twenty minutes late.<\/p>\n Sigh. It had been a long morning.<\/p>\n 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\u2019s office: Botox, Facial Peels, Sclerotherapy, Lipo-Ex.<\/p>\n Lovely.<\/em><\/p>\n The doctor I\u2019m 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.<\/p>\n So Lynn helps me get the oxygen cannula off and around the door, so the tank can be removed. We\u2019re 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, \u201cYou know, there\u2019s a ramp at the back of the building.<\/p>\n Well, no, I did not know that. Isn\u2019t that special? A ramp. For handicapped people. For people in wheelchairs. A ramp, yes, indeedy, and a DOCTOR\u2019S 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!<\/p>\n Now, at this point, I was already exhausted, so I\u2019m sure I\u2019m taking this a lot harder than I have to take it, but I said to Lynn, \u201cI can make it. It\u2019s only four little steps. I can do this.\u201d<\/p>\n \u201cAre you sure?\u201d<\/p>\n \u201cUh huh.\u201d<\/p>\n The lady at the door said, \u201cOkay\u2026 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\u2019t you have offered to help?<\/p>\n 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.<\/p>\n Step Number One: Heave the leg up, let it land on the rock-covered step.<\/p>\n There\u2019s no way you\u2019re going to make this. Look up, see yourself in that window. Look what you look like. That\u2019s 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\u2019t want to walk inside this office.<\/em><\/p>\n<\/blockquote>\n 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\u2019m not sure about the other foot though, so I heave it up, and grab the rail again, and the second step is conquered.<\/p>\n 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\u2019t help it. Oh, if they only knew. Just think what they\u2019re thinking about you. They see a fat slob, someone who didn\u2019t take care of herself, who ate too much, who played too much, someone who could just turn her entire world around if she\u2019d just lose a little weight and get a little botox. They don\u2019t see how you used to look, how you used to feel. They\u2019re probably wondering what a woman like you is doing at a cosmetic clinic. How could you possibly want cosmetic treatment; don\u2019t you see yourself? They think you\u2019re crazy. Yes, they do.<\/em><\/p>\n<\/blockquote>\n Step Number Three: The same foot that hit steps one and two tackles number three, lifting it up ever so slightly, because it\u2019s starting to throb with a severe intensity\u2013which is one of the reasons we\u2019re going to the doctor anyway\u2013I think I broke my foot. Ouch. But I finally manage to pull myself up. I\u2019m 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\u2019m breathing through my nose, out through my mouth, and I just might make it up these steps afterall.<\/p>\n What are you, Mary Freaking Tyler Moore\u2026 she\u2019s gonna make it afterallllllll\u2026. 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\u2019t know anything about that. Here you are all excited to make it up a couple of steps. Isn\u2019t it funny how perspectives change? Look how much you\u2019ve given up. Look how much you\u2019ve lost.<\/em><\/p>\n<\/blockquote>\n Step Number Four: Look How Much I\u2019ve Lost<\/p>\n Step number four was easy, pulling up and standing on the rail. I\u2019m out of breath. I\u2019m wheezing. The oxygen is low, checking the pulse ox, 87. Hey, that\u2019s 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.<\/p>\n 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\u2019t 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\u2019m the freaking picture of beauty and elegance and grace while I\u2019m being pushed to the front door of this botox clinic.<\/p>\n 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\u2019t 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\u2019s office. But we finally did manage to make it in the door. Two glances around and I hadn\u2019t felt so self-conscious in years.<\/p>\n And wouldn\u2019t 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, \u201cPut me between those couches, fast\u2026.\u201d<\/p>\n 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.<\/p>\n You should have just stayed home.<\/em><\/p>\n<\/blockquote>\n I should have just stayed home.<\/p>\n 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\u2019ve come to the conclusion that doctor\u2019s offices must never see patients in wheelchairs, because they are notoriously bad at not being wheelchair accessible. You\u2019d think dotor\u2019s offices would be best equipped for these things, but it\u2019s 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.<\/p>\n 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, \u201cAn endocrinologist, a pulmonologist and a weight management clinic.\u201d<\/p>\n I just started to cry at that point.<\/p>\n You\u2019d 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\u2019m not sick because I\u2019m fat. I\u2019m fat because I\u2019m sick. When they get the meds working right, every time, I lose weight. When the meds get screwed up, the weight comes on again \u2013 in water weight \u2013 in spades. I can document losing and gaining 30-70 pounds in a matter of days. I\u2019m not diabetic. I have perfect cholesterol and all other heart panels. My diet is low-carb, moderate protein, everything documented, carefully planned. I don\u2019t 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\u2019t pay for if I had it, right after I tell her that I\u2019m self-pay and we\u2019re trying to be as frugal about this as we can while still benefiting my health.<\/p>\n She says, \u201cWell, it\u2019s about\u2026 you know, uhm, hormones, and stuff\u2026 like\u2026 uhm, Leptin and\u2026.\u201d and her voice just fades as she looks at me with the tears streaming down my face.<\/p>\n 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.<\/p>\n So to have her say this, at this point, on that day\u2026 it deflated me. I so needed her to understand. She didn\u2019t. She did understand enough not to push the issue, though.<\/p>\n 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\u2019s 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\u2019d hear something by today. Nothing.<\/p>\n 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\u2019t 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\u2019t owe them any money. I don\u2019t owe anyone any money and I shouldn\u2019t have to talk to a financial counselor in order to get medical treatment that I\u2019m willing to pay for at the time of the treatment.<\/p>\n So when the consultation with the doctor was over, I was still in tears. I asked her, \u201cWe 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\u2026 because when I get up and move around, it goes even higher\u2026\u201d 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, \u201cI\u2019ll see you back in a month.\u201d<\/p>\n I say something along the lines of, \u201cWhat am I supposed to do in the meantime? I can barely lift my head up some days, I can\u2019t even walk twenty steps into the bathroom without almost passing out, I can\u2019t breathe most of the time and am on high-flow oxygen 24\/7. I can\u2019t sleep. I can\u2019t eat\u2026. what am I supposed to do?\u201d<\/p>\n She says, \u201cIt must be incredibly difficult for you\u2026\u201d<\/p>\n She\u2019s sending you home to die. You\u2019re someone else\u2019s problem, and she\u2019s just referring you out and sending you home to die.<\/p>\n<\/blockquote>\n \u201cOh, do shut up!\u201d I scream in my head to that little voice that has been nagging at me all day long, whispering all its nastiness at me.<\/p>\n But I can\u2019t 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.<\/p>\n And there is one really big, huge problem with that: I don\u2019t want to die.<\/p>\n But I also don\u2019t want to live like this.<\/p>\n And I don\u2019t know why I can\u2019t 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.<\/p>\n I\u2019ve been diagnosed with so many different things, I don\u2019t know if I\u2019m coming or going. I\u2019ve been given so many medications, I can\u2019t even remember which ones go to what. I get better, I get worse, I feel good for a while, then bad. I\u2019m 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 \u2013 I just need someone, anyone, to actually tell me what it is I need to do.<\/p>\n I\u2019m tired. I\u2019m scared. No, scratch that. I\u2019m 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\u2019t trust them. I have strength, but it\u2019s like they won\u2019t 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\u2019s 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\u2019t doing much better. My eyes leak fluid all day, salty, burning fluid, all day \u2013 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\u2019t falling off of me from it. I have bruises all up and down my legs and arms, and we don\u2019t 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.<\/p>\n I hurt. Everywhere. All the time. All over.<\/p>\n And I whine a lot\u2026 at least, recently, I have been.<\/p>\n Because I\u2019m tired.<\/p>\n And I don\u2019t know what to do anymore. I\u2019ve done everything I know to do. I\u2019m out of options.<\/p>\n And I can\u2019t help but feel I\u2019m running out of time. What do you do when they don\u2019t 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, \u201cLet\u2019s find out what\u2019s going on with you?\u201d<\/p>\n So yeah, I know as many of you are telling me that going into the hospital is my next step, but I can\u2019t do that if I can\u2019t freaking get the hospital to take me. UTMB won\u2019t 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\u2019re blowing through life savings here. We\u2019re putting everything we have into saving me, and we don\u2019t even know if I can be saved.<\/p>\n So it\u2019s 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\u2019s not the turn this took and for that I am sorry. Maybe I\u2019ll 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.<\/p>\n It\u2019s always harder in the evenings. Don\u2019t 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.<\/p>\n Anyway, if you\u2019re still with me, thanks for listening\u2026 I guess I just needed to purge.<\/p>\n On another note, please don\u2019t listen to that little voice inside my head. She doesn\u2019t talk to me like that very often, so I don\u2019t listen to her much when she does. Some days, I promise, she\u2019s really nice to me.<\/p>\n Love and stuff, It\u2019s taken me over a week to write this blog post. I\u2019ve 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\u2019t ever get into the flow. Then, at like […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[2,8],"tags":[],"class_list":["post-570","post","type-post","status-publish","format-standard","hentry","category-blog","category-health"],"yoast_head":"\n\n
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\nMichy<\/p>\n","protected":false},"excerpt":{"rendered":"