What the Hell is Wrong With Me? or Life Under the Invisible Umbrella

Medical coverage means everything!

Some years ago, I think it was 2004 or so, I had great insurance, since I worked for AOL. I was in retention, which is a high stress job as it is. Add to that, we were located in the Federal Building in Oklahoma City. That meant that we were surrounded by Homeland Security on a daily basis. Mega paranoia! There were ambulances in and out of there on a weekly basis. All for heart related issues. Yes, I was one of those hauled out on a gurney. So embarrassing. I had prayed that I would never be the one, but, no such luck. Give your AOL call center reps some credit, guys. Go easy on them. You have no idea the level of stress they work under. Fear of being bombed, again, bosses hovering over your shoulders and chewing your ass for every little thing, people calling you just to scream at you and your job is to calm them down and talk them out of canceling a service they hate, death threats, inside competition, and more. But, I digress. I had good insurance. I was seeing a Dr on a regular basis, and he was good at what he did. He was very thorough. Dr Williams asked questions I had never been asked before, and some of them hit home. He listened to me, and was intrigued  by what I told him. He looked at me in a way I had never been looked at. And, by that I mean that he very, very closely examined my skin, my eyes, my hair, my teeth, fingernails, fingers and toes. Then he ordered an insane battery of tests, some of them quite humiliating and annoying. None as humiliating as a PAP, which he overlooked, as did every doctor since the birth of my youngest female spawn. That was a BIG mistake, but that's another story. As it turns out, Dr Williams specialized in rare disorders. Unlike every family practitioner, Gastroenterologist, Chiropractor, Bone specialist, so forth and so on, he recognized the symptoms I was describing. That was a nice change. So, after this insane battery of tests, he ordered another, and then another. I felt like a pin cushion and was very tired of having one jug of urine in a cooler and another on the back of the toilet. Those collects got tiring. But I didn't mind as much when I remembered that he was actually DOING something.

So here it was, diagnosis number one. RTA or Renal Tubular Acidosis, Type 1 (Distal), aka dRTA. What the hell is that? Well, it means that my kidneys are idiots, in a nutshell. The can't absorb the good stuff and release it into my blood stream. They can absorb plenty off the bad stuff, though. They can't neutralize the acids in them, acid naturally produced by the body, and they end up releasing those acids into my blood. Under normal circumstances, they would send the excess acid into the urine. Like I said, my kidneys are idiots. Ok, so what does this mean? Well, it means that things like potassium can't be sent into the blood stream. This leads to hypokalemia. That, by itself, is a whole new tangle of mess.

Your muscles depend on potassium to function, and, what is your heart? That's right. It's a muscle. Over the counter potassium pills aren't enough for sever hypoglycemics. All they do is shred your stomach. Prescription VK, or potassium, Comes in the gigantic horse pills that choke you on the way down. No fun at all. Let's add the worst of the lot, liquid potassium. Oh HELL NO! In an I.V. it's normally diluted because of the burn. But, even then it hurts like hell. Most of the time they will dope you up when they're giving you a potassium push. I've had a straight, undiluted push before. Even through morphine and Demerol I was screaming bloody murder. It actually burned my veins to the point that you could see the blisters through my skin. It looked like my arm was glowing in the dark. Much massive suckage! But, it had to be done.

So, what else does RTA mean? Icky ass drugs. Specifically, sodium bicarbonates. Those are SO much fun. Holy ICK!  I actually had a nurse try to O.D. me on it once. Citra-2 is a very stout liquid and is meant to be diluted. Heavily diluted. The nurse brings me this giant syringe filled with a clear liquid, so I thought she had done it right. I reach for it and she yanks it back. Says I'm not allowed to touch it. O.o  Excuse me? Whatever. So she tells me to open my mouth and proceeds to squirt this acidic crap straight into the back of my throat. O.O  NO! It removed skin. Instead of 3 tsp Citra-2 to 4oz of water, she gave me 4oz straight Citra-2. I couldn't talk for the rest of the day. The she acted like it was MY fault. Are you effing kidding me? This is just SOME of the bullshit we have to put up with.  Anyway, it also comes with a little thing I like to call Asshole bladder. That's because my bladder acts like a royal asshole. The Hub says I have a child's bladder. I get no warning. When it decides it's full, it says "NOW! GO PEE NOW OR I'LL EXPLODE! NOW! THIS IS YOUR ONLY WARNING!" Fun stuff, man. It hurts like a mad bastard, too. Is it actually full? Usually not. And if it is, I'll never know because the damn thing refuses to empty. No one should have to strain to pee.  I feel like an old man with an enlarged prostate. It sucks.

Here's a list of symptoms from Medline Plus:
"Confusion or decreased alertness
Fatigue
Impaired growth
Increased breathing rate
Kidney stones
Nephrocalcinosis
Osteomalacia
Rickets
Muscle weakness
Other symptoms can include:
Bone pain
Decreased urine output
Increased heart rate or irregular heartbeat
Muscle cramps
Pain in the back, flank, or abdomen
Skeletal abnormalities"

Yeah, really fun stuff. But wait! There's more! Next diagnosis? Ehlers Danlos! Also known as EDS.  Type 3, subtype unknown. Ok, ok, what the heck is THAT? Well, it means I have no glue. Collagen is basically the glue that holds us together. It's not just the stuff that makes you look young. It means being double jointed, having forearm skin that feels like velvet, bruising easy, constant sprains and break, weakness, fatigue, swan neck fingers, bone spurs, Stretchy ligaments and tendons, Stretchy/fragile skin and a really long list of other side effects. Since it's what holds me together that's missing it means that everything on the inside is at risk. Yay me! Next up to bat? Fibromyalgia!

Oh what fresh hell is this? The best theory that they've come up with so far is " a central nervous system disorder, is described as a 'central sensitization syndrome' caused by neurobiological abnormalities which act to produce physiological pain and cognitive impairments as well as neuro-psychological symptomatology".  Lovely. Basically this means you hurt. You hurt all friggin' over. Head to toe, ow, leave me the hell alone or I will wound you, all over. Oh, welcome to the wonderful world of fibro. A world where sleep is scarce, upset tummy's are common, aches and pains are constant and a chunk of the medical community thinks you're a big fat fakey faker face. I hit on all of that in a past blog, You Can't See Me. It's all about the fun we go thru when people start their crap about how we must be lazy asses making excuses, because they can't see anything wrong with us. GAH! You try not being able to eat, or being afraid to eat because you know your stomach is going to turn into an explosive mess once the food hits it. You try going days on end without sleep because, no matter how hard you try, you just can't  sleep. More to the point, you try living with head to toe, crippling pain. Yeah, that's fun.

OOOOOOOOOOOOW!

 

Each of these illnesses has been linked into 2 to 3 websites that give information on them. Look at the symptoms of each one. Look at how many overlap. Each one comes with pain, depression, pain, headaches, pain, IBS and PAIN. That's a friggin' triple threat! No fair! And worse? It doesn't stop there. I have a new one I'm not ready to talk about, but comes with some of the same symptoms as the others. Seriously, look into these symptoms. Look at your friends and family. Do you know anyone with RTA, Ehlers, Fibro or any other chronic pain or invisible illness? If you do, research. Even if you don't. Arm yourself with knowledge. Believe me, these people have enough frustration in their lives than to have to deal with their friends and family doubting them too, simply out of ignorance of the facts. Learn. Be kind. Be understanding and be supportive.

Reread this, asking yourself all the while, do you want my life? Do you want your body to have to deal with what mine does? Why not? Guess what? Your "why not" answer is exactly why you shouldn't dismiss those with illnesses you can't see.