Wednesday, November 28, 2007

Why I am no longer sympathetic...this is not a very nice post!

Sometimes in LIFE, people get happens. At sometime or another, it usually happens to everyone. Sometimes you stub your toes so bad you just sit on the floor and hold it, sure it's broken, or going to fall off...maybe both. Sometimes our hurts are more serious and we really do break a bone or our face or get cuts....Honestly...I really used to care about all that when it happened to other people. I even really cared about it when it happened to me. I always said I had a really low pain tolerance. I thought I was a big hose bag (oh yeah, you heard me) who was a big cry baby when she got hurt. I've now realized, that I'm not. I've now realized that living in the kinda pain I live in, take the amount of medication I take, all the while still fighting with the insurance company, the social worker, searching the net for babies and arguing with terminix (don't ask), I'm actually NOT a weak person. I now know I'm one bad ass hard nosed lady and on a typical day, it is best not to fuck with me. Let's just outline my medical experiences for today, cause today, wasn't all THAT bad. This AM, after about 5 minutes of trying I did manage to get myself outta bed all my myself. Once on the floor (wish I was kidding) I did manage to again all my myself pull myself first to my knees, then to my feet and then to actually straighten my back. Putting into word my delightful AM "stiffness" (as my Dr likes to call it...isn't that cute) is pretty hard, try to imagine one of those really super bad Charley know the kind where you've pointed your toe and your whole calf locks up and you can move, you can only roll around and scream while you grab yourself. Imagine if you will, one of those on each side of your lower back. Oh yeah, both sides, and they go from you front, where your front hip bones are, all the way straight around to your spine, and then up your spine to just below your mid back. You don't want to straighten up all the way, but dignity makes you. Then imagine what it would feel like if you dislocated your shoulder. Honestly...I wish I was joking here folks. I've only actually ever dislocated a finger...that was about one hair worse than what I feel in each shoulder...again...both of them. Then just for fun, tighten up the muscles in between your two dislocated shoulders, so your shoulders are actually pulled back like you have hyper good posture. Not done yet kids! Now imagine you actually have almost no strength in your knees, but they manage to hurt like you've hyper extended all your ligaments. And their swollen. Since we're talking about swollen, let's head on down to the feet. Your ankles are in okay shape, but your feet are so full of fluid that's accumulated while you sleep that every step feels like your legs are going to give out. 7 of your toes are so swollen they are actually purple...and square, from being pushed together for lack of room from the swelling. Square toes anyone? Didn't think so.
So after I get the door open I make the long trek that is about 12 feet to the bathroom...aka medication land. At this point, my meds are pretty boring. I'm supposed to be getting infusions at the hospital (hence the insurance fighting, going on 4 months now), but since that's not happening, I'm self medicating with the help of my physician. I drag me weary butt (on about 3 hours of sleep because I can't sleep in pain) into the bathroom and take me AM does of meds
1000mg extended release Advil, 1250mg (I's 5 of them) extra strength Tylenol, 1 Vicoden, 1 Flexeril. I intentionally do not eat anything, knowing this will make me feel horrible, but will actually cut the pain quicker...I take them with one gulp of water....oh and screw the fact I'm not supposed to take any other acetaminophen with's only a suggestion right?
That is at 8:10.
At 11:30 I am in so much pain I take a "booster". I call 11:30, close enough to 4 hours after my first dose, which is also close enough to 6 hours I feel, since I'm not taking a full dose...don't show a nurse...they get ALL pissy at me! I take 500mg more Advil and 1000 more Tylenol (it FEELS like the vicoden is out of my system, so it must be okay to take the not recommended Tylenol again right?)
5:15 I call my Dr, and demand she call the insurance (I demand this about 2X a week) she gets in touch with the insurance and then has to call me back. The insurance company wants to know if this is an injectable medication. The Dr. Office lady has no idea. We've been doing this for 4 months and she still has no idea what the medication is. I basically laugh at her and tell her no, I've done all the injectables...those are the ones that almost put me in respiratory failure remember? She doesn't. I cut her some slack and tell her it's an infusion, take 4 hours, and it's done where the chemo patients are...usually short stay in most hospitals. She calls back and says that even though the insurance told me 2 weeks ago that they were putting mine on "priority" and that they would have an answer in 7-10 days, it actually takes 30 days from the date they got the correct form. So I'm looking at mid December. At that point they will probably deny it and I'll get to start all over :)
5:30 I get home and take another PM dose...same dosing as the AM. I can't get up off the couch I'm in so much pain...
11:30 I take the Night Night Does which swaps out 1 Advil for 2 Advil PM....I'm sure you all can see how well those work!
This is my meds dosing...I take all that but still manage to smile and tell the Dr I'm following the rules: 2 Vicoden a day (I don't call three an addiction, I don't chew them like House or anything) 2400mg Advil (okay I'm closer to 3500, but what's a 1000mg between friends?), no Tylenol (Tylenol doesn't count! they give that shit to babies!) I'm sure all can see why I've gotten right on the blood work she wants me to do to check my liver right?
So anyway, back to my blog title. Temporarily I've discovered that I'm a real jerk about other peoples pain. I try to look on the bright side with my own shit load (I like to'll never kill me, I just wish I was dead sometimes...LOL) so you should too. I don't have time to feel bad for your hang nail. Here's another thought. I'm a chronic pain sufferer. I JUST started Vicoden...not cause it wasn't offered 50 times, but because I was scared of it. When I was scared, my Dr offered me Oxy instead. If you are on meds...and I'm not on THAT med that you're on, it's for a reason, chances are pretty damn good that unless a part of your body is actually missing, you're not in more pain than me. I don't need to hear all about the "good shit" you got that fixes all pain. Further since I'm a chronic sufferer, I can't take it. Some stuff is good for the short term, but I can't take it for the next 10 years. Please don't tell that the meds I'm on did "nothing" for you. New Flash, they aren't doing much for me either. But they are all I can take. Yes, I'm on the best shit I'm allowed for long term use! Yes, I've tried Percs and Darvacet and Ultracet, and every other "cet" you're on. Could I get more powerful drugs for my "bad days" I guess, but every day is pretty much a bad day when it comes to pain. I like to be able to function, and get to work (yeah I actually don't miss work for this!) I can't do that when I'm drooling and wearing a bib, so I have to accept that I'm in some pain. I can't take the day off everyday. Yeah I've tried cortisone shots...they didn't do crap either. I've even done acupuncture! The rules are a little different when you need to take the stuff indefinitely, in high dosages, and into infinity. I know you all mean well, but I feel shitty enough about being in pain without everyone else thinking they have all the answers. When you deal with what I deal with, and have something that works...I'm all ears. When you sprain an ankle "really bad" and have to take pain meds for a couple days...that doesn't work for me long term. My friend with Lupus likes to call and tell me all her miracle drugs. I've already done them all. They either didn't do crap for me, make me feel like I was spinning in circles and feel like I was gonna pass out at the grocery store, or put me in the ER. I used to actually research every drug people recommended and every stinking time I couldn't take it. I'll stick with what I'm on, even though it doesn't do shit thanks. Course maybe it actually helps a lot! That's even scarier...better not stop!
Honestly, I love you all, I know you are just trying to help, but if we aren't playing Dr together (and since I only play that with Mike, I know we aren't) I'll stick with what my real Dr gives me.
(P.S. the answer isn't a magical vitamin combination either!)

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