Quote of the Week

"We Must be Willing to Give Up the Life We Have Planned, So As to Have the Life that is Waiting for Us."
-Joseph Campbell
Week of Aug 12, 2013

Friday, March 4, 2011

Numb3rs: Crazy 8s

(note: long and rambling - this is more a "something for me to do"with myself when I am coherant" than "something for you to read", sorry. And it was written in segments over time....because I have about 2 minutes of energy to give to anything.)

I'm not a fan of numbers. If you want to win an argument - just state your side in the form of a story problem, and I'm out.

So it only seems fitting that I'm dealing with a mysterious health problem that is constantly being measured in numbers. Temperature, oxygen percentage, and most often - the pain status. 10 is "gonna pass out" .. and I am constantly being asked, either by nurse, doctor or husband, "What's the number?"

I'm at the point now where the number is "F-you."
That's not very nice. But neither is this.
It has been a form of torture:

"You are to be in constant pain for more than a week. You are to have it keep you up all night, and finally decide to see a doctor. You think you're making a quick visit to the doctor to get some good drugs and will go home and that's that.

But instead - you are to be sent to the ER, do not pass go, do not collect $200, and told of many potentially frightening possibilities, none of which will be confirmed (and oh, by the way, we're doing this while your husband is out of town and you'll be alone during.) {In one bit of positive news, your father-in-law will show up after the scary stuff has happened and stand in and do a very good job. But still.}

You'll be treated like a heart patient, with everyone scurrying around you like "stat" - only to then see the obviously let down...and then less urgent realization, that nope, that's not it. You'll be X-Rayed - while sitting in your bed. Isn't that neat? Not really, because of constant hooking and unhooking of wires stuck all over your torso. You'll be poked and prodded and blood will be taken and saline will be given. One dude will poke and prod and say "I blew it." Which can be disconcerting - except that he means he blew your vein. Which you'll just roll your eyes at.
And in the beginning you'll be asked: What's your pain number? It's an 8. But let's put this into perspective. You have a high tolerance for pain. You've been walking around with this pain, probably at a 6 or 7 for more than a week. So your 8 is probably someone else's 9 or 10. You're tough - but have had enough. You're at an "I'm tired of this, I can't sit still, I want to get outside of my body 8." You're at a "please stick a huge needle in it, call it a heart attack, call it whatever, just call it something and fix it - 8." And you think, by telling them this, their first plan of action would be to give you something for that 8. Nope.

8 becomes a new number. It's a number that will now slow down the rest of your day. See, a couple years ago you brought in one of your sons to be treated when he fell in a playground, busted a lip, and knocked some teeth out. That son is now 8. And for some reason, the computers all want YOU to be this 8 year old boy. You gave them your social security number when you brought this boy in - which is normal. What is not normal is how completely jacked up the computer system gets when you're trying to administer treatment to a THIRTY-eight year old patient....that that computer wants to be eight.

So you wait. You hear more potential explanations: collapsed lung, pulmonary embolism, etc. You don't care what it is, you just want it to be called something. And you WANT. SOME. FLINGING. FLANGING. PAINKILLER. You wait. People ask you over and over what your date of birth is. Seriously? You can't tell by LOOKING at me that I am NOT AN 8 YEAR OLD BOY?!?!?!

Luckily for these people, you are in pain. You are in the presence of your father-in-law, so you will not completely flip your shit. You're thinking is that if you are the best, most polite, agreeable patient on the planet, they will go out of their way to help you. Oh, let's point out that you went to the doctor at 9am. It's now about noon and you're still praying the IV that the guy finally got jammed into your arm can be used for something useful. A doctor finally comes in. Your first thought is: this guy's a douche. That's not nice. But you know. He's pretty sure your problem is "muscular/skeletal" and pats you on the shoulder. You don't like to be "patted" when you are well. He tells you that he's going to have the nurse give you a drug that will take care of the pain. You are relieved. You wait. You go through the "I'm not an 8 year old boy" thing AGAIN when it comes time to get the drug. You are grateful for the pain in your hand as the nurse pushes this drug in, because it distracts you from your original pain. And it is the first hope for relief in 10 days.

Your experience getting pain meds dates back to having babies, and you know relief will be instant. It will be wonderful. And perhaps you'll be able to close your eyes - because, after all, you were up all night...and are just exhausted. 10 minutes goes by. You think you looked at the clock wrong. But after 45 minutes you are still an 8. A frustrated, uncomfortable, miserable, tired 8. But you are still being polite, and don't push the call nurse button. You won't push that button. You don't want to be one of "those" patients.

At some point Dr. Douche pops in to say he wants to do a CT scan to see things like my lungs, more clearly, and he pops out. It's becoming apparent that you are not going home as you had previously thought would happen after the muscle relaxer. After more waiting a nurse finally comes in and you've promised your husband over the phone you'll tell her you still hurt. You know you better because he is threatening to call in or make father-in-law act on his behalf, and you don't want to be one of "those" patients either. So you ask. And you get a yes! And they tell you you can't drive and that it's a powerful narcotic and you think; finally THIS will do it. And you, again, verify your birth date, SERIOUSLY, and you enjoy the pain in your hand because it's a new pain that should come with payoff. And you recognize the drug as one used when you were in labor. And you feel it instantly. That dragging-you-down-into-a-painfree-abyss feeling rush all over your body. And you think: this is more like it. This is going to work.

You hear again that they're still coming for you for the CT scan, and you still don't care and you start to feel sleepy. You think you will nap. Your father-in-law even says he'll go sitting the waiting area to give you peace to nap. This is good. But it's not. You close your eyes for probably five minutes-and that lovely feeling you got when the drug first hit your body is gone. Completely and totally gone. You are groggy and tired and there it is. An 8. And you're thinking to yourself, what the hell kind of "thing" is causing this that defies 2 types of pain medication? What can be so painful it is immune to drugs? And now your for-real, not-so-polite personality is taking over - someone SERIOUSLY needs to figure this out.

And that's about the time this hospital's version of McDreamy shows up at your door. Ok, he's more Mr. McReally-Cute-Guy-Next-Door. A Ken doll. He's so nice. And so attentive and careful. And the first thing he does is apologize all over himself that they couldn't come to get you sooner (you waited more than an hour!) because of the eight year old boy thing. That begins your downfall. You hold your breath as he unhooks you from all the wires, takes you off oxygen, and makes your bed mobile. He wheels you by your father-in-law who gives you a thumbs up and says "progress." You try to nod as if you're encouraged, but you're sliding.

Once there, you get distracted as Dr. Mc"Ken Doll" explains the process. You decide you'll keep your eyes closed the whole time so it doesn't freak you out. He explains that he'll put dye into your IV which will show him your lungs - and that you'll feel warmth in your chest as it happens. It's go time. He's so nice. You trust him. You close your eyes and you listen to the machine telling you how to breathe. And there it is. The warmth. What he fails to mention is that you also feel it somewhere else. And you smile and think, "hello there." As he rolls you out, and verifies that the warmth went away - you can tell he knows. Yes, it's TMI. But it's one of the only moments where you think humorous thoughts and actually smile to yourself. And it lasts only seconds.
As he's loading you back into the bed, you return to where you were before and you're cracking. The 8 is starting to push to a 9 out of sheer exhaustion and frustration. You keep trying to keep it together in front of Dr Mc Ken-Doll. You dab a few tears away. He's kind enough to hook you back up to all your stupid wires. He leaves and you break. Father-in-law is there and he takes it as his cue to call your parents - who you had previously agreed to wait to call until you could definitively tell them something. You can't talk to them. Because you can't talk. You can only cry. The nurse returns, you cry at her. She promises more drugs - you are stunned because you think surely your body could not safely take anymore drugs. But you are thankful and sobbing and your father-in-law gets it and lets you cry.

Once again the nurse comes in. She pushes a new drug into your hand. This is not like the normal, just add some drugs to an IV bag - there was never an IV bag, just a direct line into your hand...hence the pain every time they add something. A pain you welcome. But this time you have doubt. This time you are beside yourself. This time you plan to assault Dr. Douche when he comes back and demand answers. But then the drugs take effect and you're loopy. And tired. And finally - though it is not completely 100% gone - for the first time, a drug has taken off the edge. You are thankful. You are not an 8. When the nurse checks on you again you are hovering at a 5 and a half. Progress.

Then Dr. Douche shows up. All smiles and happy. He is happy because he is getting you, a "non-emergency" out of his ER. He is not happy for the right reason. He tells you your CT is clear. Your tests are all negative. That is MUST be muscular/skeletal and that is not ER worthy. He smiles right in your face and pats you on the arm and says "So, see, that's good - it''s none of those things, let's get you out of here." If it weren't for the drugs, he'd have no face. You fight through the fog enough to ask "But but but - I still hurt." "We'll give you drugs. You'll go see your doctor Friday if you are still in pain." You're thinking - I've been in pain nearly 2 weeks, why would anything change. You ask, "But won't the drugs just mask the pain - they're not "fixing" anything." He says something about your chest wall and it's like a sprained ankle and it just needs to rest. What? Your brain won't work fast enough to come back with - BUT IT'S BEEN "RESTING" FOR TWO WEEKS. Your brain won't align the words. He leaves. In and out in minutes....leaving you feeling dejected. All this for nothing - and nothing has or will change. You manage to squeak out to the nurse - "But what if these drugs don't help with the pain? Nothing else has?" And she just says, "Well these drugs are powerful, like the last thing in your IV." And you think - 'but that was on top of two other drugs' but have lost the energy to say anything more. It's time to go home. After nearly 8 hours.

Your torture continues in a different form:

You sleep and sweat for 8 hours. Your husband lived his own torture trying to get an earlier flight back but could not - he arrives home at about 11pm and scoops you up and you are delirious. You ask him to make you food because you have strict instructions not to take your drugs w/o food. And you must have drugs. And after sleeping 8 hours...you are at ... yep, an 8. And you want the drugs. And you're taking them two at a time. You stay up long enough to eat, take drugs, have him ask you a million questions and fuss...and then you are out again. Another 8 hours.

And you wake up and demand food...because food means drugs. You eat. You take 2. You're at a 6. And you can't stay awake. So it's back to bed. And when you're up again, you are in tears. You're foggy, groggy and high. You're back at an 8. Your husband calls the Dr. and just gets his nurse. Nut-job. She says it's ok to just take the pills with milk to get it to your blood stream faster. But she wants you to just take one. She says to only do 2 at night. You cry some more. They agree on an appointment time for you to go in first thing Friday. You decide you will take one more pill, but that pill is going to be your last. You want to see how long you can go without it...you think maybe you can even go back to work and just deal - like you had been doing. And you sleep.

You wake up twice in the night in pain. But you don't take another pill. You wake up and shower. You've learned your lesson about going to the doctor all gross and not clean shaven. You've made a mental note to never to that again. You're at a 6. Six is doable. Six is manageable - and ok for work. Aside from still feeling tired and a little drugged. Six is painful and uncomfortable, but you can deal.

You go to the Dr. And you endure the nut-job nurse who does not pick up on the fact that you have no interest in her stupid, nonsensical small talk. You endure it because you like this doctor. This doctor who started his first day at that practice Wednesday. With you. His mystery case. This doctor who seems sincerely perplexed and wants to figure this out. This doctor who asks good questions, and let's you use his back, chest and arm to explain where your pain is. You like him. But in the end, he does not have answers. He tells you it's now just about determining what it is NOT...and going from there. He wants you to see an orthopedic surgeon to rule out the muscular-skeletal. He explains that they are hard to get into. He's concerned you will run out of drugs - and offers to give you something stronger. He gives you his personal cell phone. I repeat: a doctor has given you his personal cell phone...to get more drugs. You know he knows you're not a freak and this is for real.

Your husband calls the orthopedic surgeon from the car. You can't get in until Tuesday at 2:45pm. And the tears come again. Your disappointment is at a 7. This means you will need to stay in your state of drugged-out, still in pain, but without the edge "6" through Tuesday.
You're a bit panicky. There's work. There's things. You start negotiating with your husband. You want to go to work. Today. He doesn't think it's a good idea. He wants you to take your meds and rest. You get frantic and cry more. You remember you are supposed to do produce a debate on Tuesday. You think of ALL the things you are supposed to be doing and you get stressed. He tries to talk some sense into you.

You talk to your boss. You cry at your boss - which you hate with a 9. He tries to reason with you, but you've just taken a pill and you're just beside yourself. He says nice things and you drop back to a 5. And cry more when you get off the phone.

Then your husband sits down in front of you - one of those eye-to-eye moments and hits you with a heart breaker.

He tells you the bridal shower you've been so looking forward to throwing Sunday should be postponed. You burst into tears. He's asking you to let it go - and telling you at the same time. You tell him you want your girly party. He tells you the bride will understand, everyone will understand. He says you can still have it, just not Sunday. And suddenly YOU ARE that eight year old boy - -who just a couple months ago you had to tell you were postponing his birthday party because he was sick. And his little heart broke. Like mine was, at that moment.

Disappointment: 10.


Contessa Kris said...

Kelly, I'm so sorry all this is going on with you. It sounds so awful and I don't know how your coping so well as you are. Have they ruled out Fibromyalgia? Sounds like pain some people with that describe. I'm putting you on my prayer list. In my notebook. Right here, under number 3. I will be praying. Daily. I'm praying God wraps his arms around you to make the pain bearable or better still, go away, and that they figure out what is going on FAST. He is God. He can do that. Hugs!

Tiffany said...

Kelly, I'm so sorry you are experiencing this misery. I remember 13 years ago when I was diagnosed with RA & SLE...the worst part is the waiting and wondering. God truly will be there for you...lean on Him...and on us for those little things we can do for you! Let me know if you need anything. (((HUGS)))

ReInvent U said...

You know what? For someone who usually has a smart ass comment for everything, I got nothing. Nothing except that I hate you're going through this, hate that you felt reduced to numbers and hate that you're disappointed. I wish I could wash it all away and make it better--kinda like awesome drugs without all the nasty effects.

What I love is that Ryan scooped you up, that he is taking care of you and that during all of this you still are lucid enough to write this in a way that made MY heart hurt.

Thinking of you, wishing I could do something and hoping that if I can you'll be a 1 and tell me. Seriously.

Jen said...

Boo Kelly! I'm sorry you're feeling so crummy. I know we're a couple of hours away, but let us know what we can do!! We're thinking happy healing thoughts for you.

KELLY said...

Thanks so much everyone!