Saturday, January 22, 2011

Learning How to Play Thinner

Since I've started the morphine and the other medications in the first years of the new millennium (sounds rather posh, huh?)I watched my size 5 body grow and ebb like a fury of tidal waves of fat. I would be on a pain med, and my metabolism would look me in the eye as it waved "BUH-Bye!" When I grew too accustomed to one, the weight would suddenly wander away without a slight effort. Medications and I were on a confrontational path to annoyance. I need them to stay out of wheelchairs, they need me to flaunt superiority in weight control.

I started getting a bit of an issue with food. A "bit" is an understatement. It was a nightmare. If I ate too much I'd gain, obviously, and if I ate too little I'd gain, annoyingly. But when I eat like a normal person should, I still gained. The standard rule is to be a specific weight you need to eat 10 times whatever the weight is in order to maintain the proper calorie count. For instance, if you want to keep at 120 pounds you need to maintain a 1200 calorie average in your diet. Some days you can get away with 1700, some days 700, so it averages out, right? Well I did that for 20 or so years. I ate one meal a day. Once. That's it. I would have a small something for breakfast at 3pm, then a dinner or a lunch somewhere around 7. That was it. Never drank coffee, sometimes had a beer or two, or a glass of wine with friends.

When I got told my a less than human medical professional that I was "eating too much" my fear of gaining weight kicked in. I didn't have it before, I figured I was gaining weight from medicine, whether anyone else believed me or not. It was a fact. But the one doctor who was supposed to solve that issue said, I was "eating too much". That fear made it so I would get irked at myself when I did eat more than 800 or so calories. When I was pissed I would figure, I better eat more to prove him right. Or when I was frustrated, I stayed away from eating for days. That's an eating disorder. It took me two years to stop listening to his voice in the back of my head.

The new voice came from the doctor mentioned in the last blog. It wasn't his telling me that 900-1300 calories a day was too much. It wasn't even the idea that he planned on cutting me open without asking anything about my disorders, (but that was part of it). It was getting a nice gift from my husband of a Wii and a Wii fit that led me to losing 6 pounds since Giftmas.

It doesn't matter that I'm unable to do many of the exercises hidden as games. It doesn't matter that there are days when I can only use a left arm or a right arm. It doesn't matter that I'm not dressed up to the current standards in gym attire. I can sit in my pajamas, wave around, wiggle a bit, sometimes it only takes a waddle, and shazam, an hour speeds by. When that hour is up, I get a status report that states I'm 500 or so calories spent. That's half my days caloric intake gone. I am officially burning half of my day in an hour. Did you know that it takes four calories to swing a hula-hoop, and ten to walk a tight rope? Me either. Now we do.

It also tells me how many days I've worked with the toy. It is a toy, face it. It's a video game that interacts with my body, but it's like any other physical game of catch, baseball, golf, and Frisbee(TM) in some senses. I do things and things happen that make me feel healthier. That's kind of great for a game. I'm not trying to sell you one, though. I'm trying to say that if you can find something that is fun to do that makes you feel great, and helps you sweat off some of that lunch box, then do it.

Before I was using this toy, I had used some dance DVDs. These were by Jenifer Galardi, and I discovered her on FitTV. Years back, I used to love dancing, gymnastics, and just bouncing about having fun. I had a great dance teacher in college, Dawn Kramer, and just loved her class. She laughed at me because one day I admitted, I hated sweating. For years, I hated it. It was the idea of not being able to shower right afterward that bugged me. Sweat, get cold, sometimes ice in my hair, then go home. New England dance classes are a great memory. I was also 110 pounds, muscular, lean, and could lift a small car to change a tire. Okay, maybe not that strong, but I could do much more than many people.

I used to run on a stair climber, I used to use free weights, and I used to walk everywhere. When my body gave up on me, I didn't really have any idea what to do. I couldn't do much more than isometrics. Horseback was out. I played with my doggy as long as I could, but my ex became her full time doggy-parent as my hands started to dislocate more every time we played. She is in great hands, now. My cats became my toys. It wasn't enough. I couldn't move. I didn't sleep, and I didn't have anything but pain when I tried to change any of it. Then my husband got me the video game.

It doesn't take much to find ONE thing that makes you happy. Maybe you can sit on a hoppity-hop. Maybe it takes spinning on a lazy-susan. If you like tossing a tennis ball on your wall to irk your neighbors, so what? It's doing something. Maybe you should ask your neighbor to play catch with you instead, but mostly you're just trying to move somehow. Clapping, rolling your hands, wiggling- it's all movement. Movement helps you gain muscle strength, burn calories and lets you have fun. As a kid, I used to love beating up the large collection of dough I had acquired over the years. Pink, blue, green, orange- smells that still remain embedded in my memory- all are part of the best times of being a kid. So be a little childish and play a bit. You may lose some weight, or you may gain some smiling. Either way, you'll feel better.

So this blog questions- what is it that you do to play? What is your fun? Do you have recess for yourself?

Saturday, January 8, 2011

Psychic Doctors

Welcome to the new year. It seems in 2010, I was beaten down so badly by my own body I had little energy, inclination, or ability to write to anyone about the issues I was facing. There were more curve balls in the past year. Myasthenia Gravis was one, and having Trigeminal Neuropathy was another. Near the end of the year, one of my doctors decided, with all the breathing issues, whether I liked it or not, the Prednisone was back on my plan for a week or so. In less than a month, I gained 26 lbs on top of another 20 I gained over the summer. This is frustrating. So I see a doctor.

My HMO provided me with a Primary Care Physician, (PCP), who is, well, to be blunt, not exactly friendly. She is medically competent, but lacks any empathy. I would rather see my dog's veterinarian who may not know what's wrong with me, but is absolutely at least interested. The problem with a doctor with her credentials, aside from her lackluster bedside manner, is her ability to pawn off patients to other just as inhumane "specialists" who would much rather be seen in a surgical unit than anywhere near an actual patient who might require a conversation. It's not like Dr. House; it's like Dr. Frankenstein.

I'm firing these doctors from the HMO as of this very moment. There are so many sites that I can go to in order to find out what other patients in this area have found- I don't have to waste my money or time anymore. And, at this point, I have not been satisfied feeling like I have to just blindly take someone's assumption at face value. And, this guy today- all assuming. He came across as a Psychic Doctor.

Psychic Doctors seem to spring up everywhere these days. They think that any and all patients walking in the door have just come in after viewing the last episode of Dr. Oz, and only want to talk about the five health issues listed on the front pages of the search engine landing pages. They also seem keen on targeting the very same patients with whatever potions and pills the latest sales man has brought to them. These professionals appear to lose their understanding of the meaning of the practice of medicine and instead just go through the motions of ushering in people at 10.3 minute intervals, barely even introducing themselves, and certainly not polite enough to let the patients know that when the same doctor is found leaving the room, they've completed their task of the appointment. Go directly to check-out, do not pass go, ensure we have your copay.

It can't purely be the physician's fault. A managed health care system demands volume of patients to meet quotas. It demands that specific illnesses have specific codes marked down on intake sheets or the appointment won't make a specific set of funds. That's a problem. As patients, we can tell a doctor we are there to see them for Problem A, but by the time we are sitting in the waiting room, the office has already deemed that Problem C is the one that brings in a better income, so for some reason only known to bankers and business men, our health is now redirected to whatever is going to be a bottom line payout by the insurance.

This week I was subjected to exactly this type of treatment. I walked into Dr. F's. office expecting to be given some advice on how to handle a case of constipation. I don't want to have any surgery. I don't want to have anyone who isn't aware of my disorder taking a scalpel to my body at all. Because his specialty is listed as Gastroenterology, I had assumed he may have some suggestion on what to do over the weight gain from the steroids I've had in the last few months. Instead, I was given yet one more steroidal treatment, which he described as a "salt absorber". I was told I was eating too much. This is never smart to tell someone who has eating disorders, and who keeps a vigilant food diary- at 1100 calories to 1500 calories a day, that's not possible. I was interupted not once, not twice, but six times when I tried to tell him what I had taken for my issue, and instead I was cut off at first being told I was probably addicted to the laxatives, and then told I needed to have more of them. He never did find out that I had adverse reactions to two that he demanded I have in my medicine cabinet.

Psychics, as some may know, are listening to cues and trying to predict your questions before they are asked. Most astound us by the knowledge they have of our lives, when really they are watching our responses so they can figure out where else to lead the conversation. Well, the doctors who want to tell us what is wrong with us before even reading our files are doing much the same thing. What really pissed me off about this guy, more than the fact I waited for nearly an hour to see him for less than six minutes, more than the fact that I was assumed to need or want Lap Band surgery, and more than the fact he asked me about my illness and cut me off before I told him what it was- he expects to perform a surgical procedure on me, without knowing ANYTHING about Ehlers-Danlos.

At one point in the very short conversation, he asked "You've had orthopedic surgeries, then?" He stated this rather than asking this, and was already on to his next statement before I said, "No, I'm not able to have that type of surgery, my tendons would not handle it, they'd stretch back out of place soon after." He was telling me he was planning on performing a procedure that he let me know had problems such as perforations during testing. Well, for someone with a collagen disorder, hearing this stated from someone who hasn't cut into someone like me left me horrified. In fact, I believe my constipation was healed at that very second.

Within moments he was shuffling me out of the office, setting me up with his "procedure" as he had the previous six patients there from when I arrived. I heard the exact patter as he gave to them, and without missing a step he was in to the room of the last patient of the day. There were no mistakes for him- his job was to get me to agree to a procedure and to ensure the insurance company would pay for it. In fact, I was told that they needed time to get approval before the scheduled date. By now I had made up my mind to cancel this.

If a doctor pushes you into a procedure or tells you his point of view without hearing you, he's not a good doctor. The next morning I scoured the sites that rate medical professionals for someone who is better equipped to hear me, and less interested in pushing me in and out the door. According to all I've read, I'm of the belief this person is one I will meet a week or so from now. If all I have read in blogs and reviews is correct, I may have a very competent young doctor who is willing to hear my issues without telling me what they are first. It may be blind optimism on my part.

My current "Primary Care" doctor has given me two years of seeing specialists, and still not recognizing me when I come in. The last time I saw her she scheduled me for a second annual physical, forgetting that I had one only weeks before. She hadn't read her own notes. She also forgot that she had sent me to another specialist just last year, and said that I was mistaken, it had to have been another doctor- so she sent me in for yet one more sonogram and x-ray. The Radiologist said she had remembered me coming in only a few months before and was surprised to see me so soon. (As was I.) The one hand-off I am grateful to have is that of my neurologist who was able to pinpoint not just one but two issues in less time than this PCP even tried to find in months. He is now one of my regular doctors. She no longer is going to have access to me. I am done being her lab rat.

So this months' question- What have doctors done to make you think they're listening and hearing what you're saying? Have you felt like cattle or do you feel as if you are actually being cared for? What would you tell a doctor if s/he asked how a patient should expect an appointment to go?