The Wonder of Freedom

I live on the corner in a small city. Bus's come and go on my corner and I watch people waiting for the buses, sometimes huddling together during bad weather. Mothers and fathers walk past my house on their way to the large daycare center at the bottom of the hill. The problem is that I don't think of this as a house in the middle of a city. My tiny and I do mean tiny house has one amazing thing about it. The front has a sun room with almost floor to ceiling windows. Not knowing any better about cost and interest rates we had the windows installed almost the second we bought the house over 20 years ago. Now I've filled the windows with plants and anything else that meets my fancy. I pretend the room and my house is in the middle of the country. This can cause some problems when I dress as if I'm completely alone in the country - like staying in my pajamas all day. I'm usually yanked back to reality when someone runs the stop sign almost directly beside my house. The street ends in a T and running the stop sign can mean smashing into whoever is driving down the straight part of the T. It also means having to put up with people spinning their wheels and gunning their engines as they climb the hill. After 20 years I've become pretty tolerant about the cars. I have not, however, given up the feeling of living in the country. I live in one of those city's called "A Tree City." This means that back when America had money there was a grant program that provided seedlings to city's so they could move from asphalt to green. Since there was no money to maintain the trees they periodically have to be cut down due to old age but by and large it makes my little city quite pretty. Its one of the many things I love about it. When my British husband visited for the first time the crab apple trees were blooming. He was quite astonished.

I pretty much stay in pajamas unless all day unless I have to go out. For instance today is one of my favorite days - no doctor appointments, thus no reason to get into real clothes. The problem is I'm beginning to understand how old women become recluses who forget to shower, dress or even leave the house. I call them "Window Widows." We've all seen them. They sit staring out their windows, never moving, leaving us wondering why they don't leave the house. I live in terror of becoming a window widow and force myself every day to do something like work on my quilting, answer my email, something that makes me move. Still I have to admit there are definitely days when, due to the various illnesses, movement goes beyond a challenge to damn near impossible. Getting back to the title of this blog - the Wonder of Freedom - I have suffered for years from what I call the "Hurry Hurry's." I suspect many people suffer from this, particularly women. "Hurry hurry and get dressed. Don't read that newspaper you don't have the time. Why aren't you downstairs working on something substantive? Now you would think that the possibility of dying would make me move faster but In fact its helping me move slower. To do the many things I still want to do I have to slow down so I get them right and in the slowing down I'm finding an amazing peacefulness. Again you'd think someone whose retired has all the time in the world but trust me when I tell you it ain't easy to go from Type A to retired. Before I got seriously ill I thought I should tear down the house and rebuild it. After all I had to time. I'm working on creating daily time things I must do and daily things I want to do. Like at 8am do all my medical stuff (test for blood sugar, test for blood pressure, take insulin, take pills, spend 2 minutes on treadmill (it might not sound like much to you but any day I can move my legs is a very big deal) put in eye drops and on and on. On the one hand all the medical stuff bugs me and on the other hand I think its really important to show the transplant people I can toe the line and do whatever they ask of me. on time. I heard about a man who had to take 60 pills a day after the transplant so his body wouldn't reject the lung. At first it sounded like alot but I took a look at MY pill box and there are already over 20 pills in there. I was amazed. Well my fingers are giving me those signals that mean get off the keyboard stupid. I'll be back later.

Coming Out Of The Death Closet

I've never been know for doing anything quietly but I honestly didn't know just how taboo talking about death is in America. It's right up there with not talking about money. I'm hoping that what we're going through with the economy now will change that but, smile, I digress. When the doctor explained that, after years of pneumonia, bronchitis, pleurisy and everything in between, scar tissue had built up and was destroying my left lung. Now I knew things were bad. I'm on oxygen 24/7 and sometimes just walking up the steps or across the living room leaves me breathless. But when he said that my lungs were deteriorating and I needed to get moving on applying for a lung transplant he definitely got my attention. He also said it can take from 6 months to 2 years to get the transplant and most people in my condition die before they reach that point. Not to mention have systemic lupus will probably make the transplant committee very unhappy. Yep...I broke down. My husband broke down. Hell I expected the doctor to break down but he didn't. Now this may sound strange but my first reaction was embarrassment and shame. I didn't want to tell anyone. What if they were wrong and I not only didn't need a lung transplant but I wasn't going to die. If I'm around a year from now I'll now only look like an idiot but I'll appear to be a liar. Then I realized I've spent my entire life worrying about what people think of me. Sometimes it's stopped me and sometimes now but it's always exhausted me. So hung up on what people think of me that I won't tell them I'm dying. Now that's ridiculous.

The first thing I discovered is boundaries start falling like leaves when you think you're going to die. It';s amazing. The things I've always wanted to say but couldn't or wouldn't seem to jump right out of my mouth - good and bad. I saw an older couple having dinner when I went in to pick up take out. She was leaning against him and he was holding her hand. I walked right over to them and complimented them on what seem to clearly be a long and loving relationship. They were smiling so broadly you could have lite the room with it. The cashier in the grocery store was complaining loudly about this really terrible horrible day. So I said "I bet my day is worse than yours. I'm dying." That stopped him in his tracks. I never realized how much we control what we say, what we think. But my boundaries just keep falling and I'm actually learning to enjoy it..at least a bit.

The flip side of all this is everything from extreme pain to a loss of energy to the recognition that there are things I will never do again. Some days I'm heartbroken. Some days I mad as hell. The pain is relentless and I'm no crybaby about pain. I've been dealing with lupus and rheumatoid arthritis for over ten years. Believe me I know pain. But today, for instance, I can't draw in a deep breath. I had to mash my food up like baby food because the whole swallowing thing is tied to lung dysfunction. I was determined I was going to eat anyway. Big mistake. I've got to me more careful. My husband is sleeping (remember he works the night shift) and if I'd gotten literally choked up on the food there'd be no one to help. There are alot of things like that that I'm not ready to face yet let alone talk about. But this is me coming out of the death closet online for the first time. It's scary stuff but I figure there have got to be at least one or two folks out there going through the same thing. I know it sounds old but maybe following my journey will help with theirs.

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.

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.

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.