Tuesday, February 24, 2009

When Doctors Give Up

My husband has been working a night shift for a couple of months now. I keep waking up, almost always at 2am. I turn over, see he's not there and get up to go find him. I'm halfway out the bedroom door putting on my bathrobe when I realize he's not in the house. It never ceases to amaze me, how ingrained behavior can be and how quickly habits form. Anyway, went to see the rheumatologist today. She's been my doctor for 10 years, 10 YEARS! It's astonishing. She's still skinny as a rail and looks like she's 20 years old. She one of the few women whose beauty doesn't make me want to run screaming from the room to find a gun. She's on a constant lookout for the newest biologic which is what I think they call drugs designed for a specific illness. After 10 years of battling lupus and RA we've pretty much run through the list. Prednisone continues to be the gold standard for me in terms of controlling the joint pain enough to keep me from screaming out loud and no that's is not an exaggeration. Unfortunately the prednisone has turned me into the African-American equivalent of a fat brown hamster. Remember how Jerry Lewis looked a few years ago when he was taking pred for an illness he had? That's me - moon face and all. So to get me off the pred we're going to try Cytoxan. I hear its a mean drug (i.e. nasty side effects) but I'm willing to give it a try if it gives me even a bit of my life back. Of course finding myself throwing up in a trashcan while losing my hair constitutes truly scary side effects. The trick to new meds is learning how to tolerate them physically until you figure out if they actually work for you. I take over 20 pills a day now so what's 2 more?

I never cease to be amazed at what human beings are willing to put up with in order to stay alive. When I was 20 years old, almost not fat, strong and determined to succeed at all costs I never, in my wildest imagination saw myself wearing adult diapers at night when I went to bed. Initially I was so humiliated I wore everything just short of blue jeans to bed so my husband wouldn't see the diaper. Two horrific didn't make it to the bathroom "accidents" later the secret was out. This extraordinary man saw me wearing a Depends, gave me a wolf whistle and said "I love you in those frilly panties baby." I cried. Now you KNOW there are men that would have run screaming from the house over finding their wife or girlfriend had traded silky negligees for a Depends diaper. But my baby found a way t compliment me. He's not just a keeper, he's an Angel and I'd be lost without him. At the moment I'd also be lost without Ramen noodles and hotdogs which is what I'm fixing to eat. I threw in a couple of eggs in to hard boil. So this constitutes an officially strange middle of the night meal. Since it seems like I may have something called a hiatial hernia I know this meal is a 50/50 shot. It may go down fine and let me sleep or it may do that regurg acid throat burning thing that shoots me straight up out of bed reaching for the nearest liquid, anything anything that I can drink to calm the burning down. This hernia thing may also be why I struggle to breath when I'm lying down. It means see another doctor, more tests, a scope down my throat while I'm awake but "uncomfortable." It really sucks.

OK so about doctors giving up, I've gone from being the patient a doctor can't wait to see (making jokes, high fiving, laughing in the face of pain) to the patient doctors don't want to see (I can't fix her, she's only getting worse and her quality of life is fading) so you begin to get the vibe. You can hear it in his or her voice - that inflection that hints at anything from boredom to pity. My rheumatologist (whose called a rheumie by insiders) said that doctor's are trained practically from day one to heal heal heal. To make the patient better and if they can't they get discouraged like any one else I guess. But when you're the patient looking in to that discouraged face its a whole different thing. It will make you more discouraged than the doctor feels. Anyway, the doctor who was working with me on pain control informed me we've moved to "maintenance." I stared at him and he stared back. Maintenance is a fancy way of saying "there's nothing else I can do for you so move along." Frankly I was kind of stunned but I realize now this kind of doctor behavior is much more common than I previously knew. I felt like I was hanging out there on my own wondering if I could get more pain meds. When you need pain meds you feel like a junkie trying to convince strangers you need a refill. I have no interest in getting high. I just want a break from the pain. Speaking of which, its 4:25am and I guess its time to throw in the towel and call it a night. I can never figure out whether the act of blogging is cathartic or self destructive. Its always a little scarey to put your life out there and risk being judged.

Monday, February 16, 2009

Three Trips to the Emergency Room

I'm that woman you hear about who spends so much time getting ready to go to the emergency room that I'll probably die before I get there. I have to take a shower, make sure there are no holes in my underwear, pack a large bag of everything on earth that I might possibly need (since I'll be in the ER minimum of 5 hours) make sure I've got an up-to-date list of doctor's names, phone numbers and prescriptions, a book to read, a magazine to read in case I don't like the book, my big red Franklin which holds all the information of my entire life, eye glass cleaners, notebook, pens, 1 DEPENDS diaper because you just never know, bottle of water, bottle of ice tea. You get the idea here. Going to the ER is terrifying enough so the more familiar things I can bring with me the less likely I am to jump up and begin screaming at random - something which really upsets the nurses by the way.

Why did I go? I couldn't stop screaming. I don't mean screaming inside your head. Mean flat out, my car is stuck om the railroad tracks, someone I love with all my life is dead, my best friend just said never call me again, you get the general picture here, flat out screaming at the top of my lungs. Every time i moved my left side even just a little the pain caused me to involuntarily scream. Now I knew the COPD thing was getting worse and worse because I was making noises like a cheap accordion. A friend also said this sound is like the wind blowing through a cheap pane of glass. Either way it signals I'm in deep doodoo on the health front. This was something new and you don't want new when you're in my condition. My daughter, who called about something else, heard gasping and demanded I go to the ER. The problem with growing older is how much your children feel it gives them permission to talk to you like you are now the child. I'm wrestling with this one but generally allow it because I know deep down it means they love and worry about me. My husband and I went to the ER at the best possible time - 5:30AM on a Monday morning. You learn these things unless you're looking to spend a minimum of 12 hours in the ER fighting with strangers over what will be watched on the one TV in the waiting room. My suggestion to make your ER visit go better. Be as polite and friendly as possible given that you're most likely in excruciating pain. However, suggestion to help you maintain your pride - require everyone to tell you who they are. I reach out my hand to have it shaken and say "And you are?" if they don't introduce themself Stops them cold every time. I suspect the ER folks meet so many people they literally forget who they are so they don't introduce themselves.

There is only one statement guaranteed to make me jump off the gurney and try to commit murder. My husband always stops me so I have yet to succeed. Someone while needing to put in an IV, do a spinal tap or worse yet draw an arterial blood gas ABG (a blood draw from the tiny artery in my hand). An ABG is so painful that I have no problem with screaming out loud at the top of my lungs while weeping. When completed, occasionally some idiot says "Oh come on. It wasn't that bad was it?" If by chance there's someone from the medical profession reading this take this message back to your colleagues. Do not insult a patient by telling them they have no right to their pain. It hurts as much as it hurts and unless you live in their skin you have no idea of how bad a procedure can be. Whew...I feel so much better now.

Anyway, after 5 hours, a big dose of sodium medrol and a 1 hour nebulizer treatment I wasn't breathing any better and they wanted to admit me. I begged to be allowed to go home and take it easy. OK I admit the taking it easy part is really hard for me but I'm trying. The thing about hospitals is that, when I was much younger I thought of it as a great place to get attention. At almost 56 I'm afraid they won't let me leave. So I hate going there. It's not very mature and drives my daughter nuts but I'm just flat out terrified to go the ER. I'm open to any ideas that can change my thinking. This is getting to be the equivalent of a fear of airplanes. I've had a stroke so again I'm aware of the importance of time when it comes to dealing with illness by going to the ER. I'm trying to act like a grownup but some days I frankly lose the fight.

A digression: I was watching the evening news and they showed an invention of a very small camper type thing wrapped around a shopping cart. The idea is to provide the homeless with a place they can sleep up off the ground. When they interviewed one guy who uses it he said, and I'm not making this up, "I'm on my way to the American dream now. I've got my first home." I watched his face closely to see if he was being facetious but he clearly wasn't. In this time when we seem to talk of nothing but the thousands going through foreclosure this man gave me pause as well as humbled me. He was so delighted to have his shopping cart home. A little home made out of a shopping cart and it brought him such joy! Think about it.

I'm tired from my digression. Dying is exhausting.

Monday, February 2, 2009

Up At 2AM Again

I'm up watching the Grey's Anatomy I DVR'd. When you're seriously ill watching shows like Grey's Anatomy convinces you that your own illnesses aren't as real or scary. I'm also eating my second bowl of Lucky Charms - mainly because I ran out of Honey Nut Cheerios. I figure these things, short of my breaking down and making mac and cheese from scratch, are the closest I can get to serious comfort foods at this time of day. The pain is back like a runaway freight train. This time its in my left hip-the usual bone or joint pain. I've hauled out every legal painkiller I've got and that's saying something cause I've got alot. From oxycodone to neurontin to methadone to fentanyl . at one tine i figured out had the equivalent of $8,000 worth of pain killers. i knew where to go to sell them but with my luck i knew I'd get busted. Heavy duty painkillers for heavy duty pain. I've got so many diseases its a virtual card game to figure out which one is plaguing me at any given time. This makes it easy for the bad doctors to write me off and the good doctors to feel really bad about me.

Now don't get me wrong. I'm NOT into the self pity thing. Before I became a card carrying member of the disabled, chronically ill squad disabled people used to really annoy me. They were whiny and believed they had some God given right to be compensated for what they'd suffered. It was almost as bad as the expectations of black people and since I'm black you can imagine how well that went over during black history month discussions. Well that karma thing will get you every time. It sure got me. Over the course of 10 years I've gone from using a cane to a manual wheelchair, to a rolling walker to an electric scooter and a few things in- between In my lifetime I have gone from being a teenage welfare mother to being appointed Assistant Welfare Commissioner for my State. It's all been one hell of a journey.