Bad Day, Better Emotions
Well, I'm totally miserable with my head today. Nauseaus, in pain, the whole bit. But, the weird thing is I'm feeling better emotionally. It's funny, but I went back yesterday and read a bunch of my earlier blogs up to April, I think, and they actually made me feel better about stuff. Isn't that weird? I just read about Samatha, Ancestry, Identity, Just Say No, First 5 minutes, Empowerment and some other ones, and I just felt better after that. I never would've thought that reading my previous entries would've made me feel better. At first, I was just looking to see whether I was getting worse, better or staying the same, physically (it's about the same), and then just reading some of those blogs just kind of lifted my spirits in a weird way. It gave me the impetous to keep going. I have to get back to learning to embrace the enemy and move on toward acceptance. That doesn't mean I'll accept defeat, but just accept the fact that this is my reality for the time being and I have to learn to live in the present, not worrying about the future, not regretting the past. I wonder sometimes if this blog helps anyone else, or does it just bum ya'll out? But, either way, I have to continue to journal for the simple fact that it helps me. There's a saying that confession is good for the soul, and I think that's true. It's good to get the negative emotions out, sort of like cleansing your mind. It's good to remember that there've been good times too, like my fun mother's day card, which is still posted on the fridge; my birthday and the couple of times that I actually was able to get away from my prison.
Better Attitude
Ok, I'm feeling better today about my situ. Sort of. I still want to give up, but I've never been a quitter, so... I'm going to call the doc and make an appointment and insist that we come up with a better plan of action regarding my pain management. I can't afford anymore imitrex. So, I need to find a med that I can afford that can help me out until I can see a pain mgt doc--whenever that will be.
I'm still ticked off about the medical system, probably always will be. I still hate my situation, but I've definately given up on hoping that's going to change anytime soon, so I'm going to have to figure out a way to accept it.
It always comes back to learning to embrace the enemy. How do I do that? To most people it's not "real", because they can't see it. But, to me, it's so very real. It has a great, dark shape that's bigger than me. It has an evil laugh and has ill-will. It's real.
There are alot of cultures who believe in the spirit world, including both Christians and Bhuddists. But, I think, unless you actually encounter this kind of pain, that is so very real, it's hard to truly understand or believe that there is such a thing.
I'm not saying that migraine is a spiritual problem or an evil spirit. Obviously it's not, it's a physical manifestation. But, it has opened my mind to the possibility, even the probability of good and evil forces that we can't see, but that are very real indeed. When I look back at some of the crazy stunts I pulled as a teen, I know that I have at least one guardian angel. And likewise, when I think of the bad things that seemingly randomly happened to me, I know that there's at least one evil spirit that affected an outcome. It probably sounds like voo-doo to alot of people or like insane hallucinations or something, but I don't care what others think, if you haven't noticed by now. lol
So, if I believe in the existence of good and evil and God and Devil, and believe that God will win and the Devil will lose, then why doesn't God just rescue me and heal me from the pain? Isn't that one of the most human and basic questions that anyone who experiences grief or physical pain asks? Why me? and God, why don't you take this away?
People look for the answers to this question and come up with all kinds of theories. The most common theory is that "This is happening for a reason." Some people think they go through things as a test of their faith. Some think they're supposed to learn some kind of lesson from the trial. Some think they're simply supposed to be more compassionate to others for their pain. Others think that it's a way to earn their place in Heaven or some special dispensation from God. But, I think that the understanding, learning, compassion that we gain from being in chronic pain or going through the grieving process is just the natural result of what we're going through. I don't believe it's the reason for going through it. As I've said many times before, I think that Shit just happens and how we deal with it is so very individual. Our perception of the why's and wherefore's of what we're going through is as individual as our coping strategies.
No matter what, the truth is that our character is challenged at it's basic core. Do we become bitter and close-minded, or do we become compassionate and increase our love.
Yes, the amazing thing is that my compassion is what is increased. You'd think it would be the opposite, that other people's compassion would be increased by what I'm going through, but it just doesn't work like that. It takes compassion not to bite someone's head off when they suggest you just need to get out more. It takes compassion not to go off on your doc when they suggest it's "all in your head". It takes compassion not to alienate your loved ones when they don't understand what you're going through and ball you out for forgetting their birthday or something like that, just because you were drugged out of your mind because the pain is so bad. And, it even takes compassion to understand that your family, your loved ones, are going through hell watching you suffer.
Cultivating compassion is therefore, the most difficult virtue to train yourself into. It's the most challenging attribute to add to your character. In my opinion, compassion is the one thing that we should focus on developing within ourselves. It's love in action. And, in the wise words of the late, great John Lennon, "Love is all you need." At the core this is true. Living with pain is horrible, it's a nightmare. But, if I had to be in this kind of cruel pain without any love in my life, there would be no point to continue living and my life would be worse than being in hell. It's the only thing that keeps me going, keeps me alive, gives me a reason to continue living. It's not *all* I need, it's *what* I need.
Throwing in the Towel
Ok, so I got a call today from my doc's office. That pain management (pm from now on) doc isn't taking any new patients for quite awhile. I need to have private insurance to see a pm doc anyway and we still don't have that, because the admin screwed up on our health insurance. We were supposed to have it two days ago.
So, I've decided to throw in the towel. Yeah, that's right, I'm quitting. If they want to just put in an iv full of heroin 24/7, I'm fine with it. Just keep me high all the fucking time. I don't give a shit anymore. Oh, ok, so go ahead and take away the pain meds and let me just lay curled up in a ball 24/7/365. I could give a damn.
I'm tired of this friggin' merry-go-round. I'm tired of getting screwed at every turn and not getting the kind of care I need. I know my doc tries her hardest to help me. I get that. I get that they get frustrated and don't know what to do. I REALLY get that. I mean, what the fuck do they think? That I'm not frustrated out of my damn mind, too? You know, I honestly don't know how to deal with this, think about this. I'm completely at a loss here.
My doc wants to get me into Stanford. Fantastic. The only problem is that she can't do anything about that until I'm on private insurance.
I told them today that I'm not going in for anymore trigger shots. They're not working without the cortisone, and they can't put the cortisone in there anymore. It's not that they're being jerks about it. It's because the cortisone dries out the tendons and theoretically if I banged my head on something it could break my neck. So, the reasons are valid. But the shots aren't doing anything for me without the cortisone. So, I'm giving those up.
I told them, I'm just going to live on fioricet and when necessary going in for the narc cocktail. Of course, they don't know this, but I can give myself that cocktail at home, now--except for the tordal. We'll see if it works without that.
I guess I've entered into the depression phase officially now. I think that that's the phase where you don't care about what happens anymore. Well, hello, that's me at the moment. Course, I might change my mind by tomorrow, but I doubt it.
Ok, well, 'nuff about that. Anyone watch "House" tonight? Just another show to help muddy the waters. You know this is what bothers me about Western Medicine. When you are in pain, you're given "habit forming" drugs. Then when the pain is under control from the drugs you have to take, they want to take you off the drugs because you're "addicted". Well, duh! Of course you're addicted to a "habit forming" drug when you have to have it to survive or have some semblence of a life. It becomes a vicious cycle. The question is, does it matter if you're addicted to something if it's something that increases the quality of your life?
They're Gone!
Well, I FINALLY got my teeth extracted, thank God! They put me to sleep. It was funny, because I don't even remember falling asleep. The last thing I remember is asking the nurse if the medicine was going in yet. lol Anyway, they're out and now I have two things that are in pain. My jaw is hurting pretty bad and so is my head. Those last trigger shots didn't work worth a darn. I just don't think they're working well because I can't have the cortisone in them anymore and that's what brought down the swelling which in turn took away the pain. So, I'm contending with that. But, you want to know what was totally cool and totally weird? My dentist prescribed Dilauded suppositories for me. I don't know if you remember or not, but that's the pain med that I have to go to the doc's office and get the shot for it when I'm in extreme pain. I begged my doc for that prescription and she wouldn't give it to me, and here's my dentist giving me a prescription for it. Hah! So, now, when I'm in extreme pain, I can give myself a dilauded suppository and a dose of phenergan and be out of pain without having to make the excruciating drive to my doc's office. He prescribed like 20 pills, so that's going to last a long time. Hey, it's better than paying $250 every time I have to go to the doc's office for those shots. Yay! But, anyway, back to the dental surgery, I woke up in excruciating pain and thought I was going to have to go to the ER, but the dentist goes, "Nah, you don't need to go over there. I can take care of you right here." So, he gave me a shot in the butt of dilauded, put the tordal in the IV and had already given me a strong anti-emitic (anti-nausea) drug when he'd done the surgery. For some reason it wasn't working as fast as usual, so I asked them if they'd given me the right dose and they said they had. About four or five minutes later, I felt the relief, thank goodness, and slept all the way home. My husband even stopped to do a little grocery shopping while I slept. I wasn't aware of a darn thing. Yaaaay!
Loss of Freedom
I didn't realize until a friend brought it to my attention how much time had gone by since I posted my last blog. You know, I've kind of had writer's block, or maybe it's life block. I have so many things stewing in my mind right now that it's really hard to find a place to start, to write about. So, I guess I'll just pick one and start there.
I was thinking tonight about how frustrating it is to not have a choice or a say in anything. I'm really frustrated lately. This must be what it feels like to be under communism or a dictatorship. I feel helpless, out of control and I hate it!
I have no control over any area of my life other than my personal appearance and even that I don't have complete control over. Do you have any idea what that's like?
My doctor's make decisions for me. Like recently when my GP said that the Neurologist she'd contacted wouldn't take my case. What the hell is that all about? All that I wanted the appointment for was so that I could get a referral to a neurosurgeon. You know, if I got that TENS unit put in, I wouldn't have to take any drugs for my migraines? I mean, how awesome would that be? All I'd need to do when the pain came on is press a button, send a small electrical current through my nerves and oila! I have my life back. I'm really wondering right now what the hell she told him. I've never had a doctor say that he wouldn't see me, before and I've never heard of that happening. What the fuck?! Instead, I'm being sent to a pain management specialist who is going to put me on more drugs--most likely addictive ones. I just don't get it. Western medicine is so freakin' bizarre! Let's see here, surgery or drugs. Hmmm. Isn't the choice obvious?
Ok, so here's another thing I'm really irritated about. I sit in this dark fuckin' trailer all damn day long with nothing to do. I can't move to much because it exacerbates the migraines. I can't go outside because the light hurts my eyes so damn much. I can't read! I mean, I can't fuckin' read a bloody book! What the hell? I'm so fucking bored out of my freaking mind!
Then there's the fact that I live here at all. Tooootallly not my choice. I HATE, I mean I can't emphasize it enough, I HATE living in this area. It's impoverished, the best jobs pay around $9 an hour if you've been there awhile. You're lucky if you find a job that offers benefits and if you want vacation you can just kiss that idea goodbye. Not to mention the fact that I have very few good memories of living in this God-forsaken county from when I was a teenager through adulthood. This place totally sucks!
I can't even get my hair done, because just pulling a comb through it hurts to no end! I'm really, really frustrated with my life right now and I'm so tired of being in pain all the bloody time. Even my "good" days aren't truly good. It just means that I can get up and do something cool, like washing the dishes. Big fucking whoopee!
Here's another thing that irritates me, since I'm getting some stuff off my chest: I'm irritated that my doctor thinks I need to see a shrink just because they can't find any physiological causes for the migraines. I mean, that's what migraines are! They don't have physiological causes--stuff you can see on an x-ray or cat scan. No one ever has "seen" a migraine, except that one university hospital back east that specializes in migraines and they're just now beginning to work on an mri type machine that can look at it while it happens. It still won't explain the causes or reasons why you get it and certainly won't cure it. I mean, I want to see the shrink for personal reasons, like stress management and to deal with all the shitty stuff from my childhood, yada, yada. So, that's not the problem. I just have a problem with doctors who send you to a shrink because they get frustrated and can't figure out how to deal with the problem. I understand that frustration. I have it too, but that doesn't mean I need to see a shrink for it. That, in and of itself, is crazy if you ask me.
So, I guess I should be blogging every day that I can, but I've just got so much pent up frustration right now, that it's kind of scary to let it all out. I guess it's better than going psycho, but still, it's not fun.
I have lost my freedom. I have lost control over what happens to me physically, financially and socially. The only things that I still have control over are my mind and emotions. What a way to live, eh? What a way to live.
It's Your Thang, Do what You wanna Do
So, my doc wants me to write down stuff that I'd want to do (other than work, because they're not going to let me go back to work for a long time, she said) if my quality of life was better. Is it a tease or is it torture? Well, here goes. It's probably going to be a pretty long list by the time I'm done with it, so I'm not going to write it all in one sitting.
I'd take a walk
I'd go to dinner with my husband and see a movie
I'd go to some activity with my daughter (preferably shopping!)
I'd lay out in the sun and bask
I'd go swimming (that's a big one, cuz it's my favorite sport)
I'd listen to loud music all the time
I'd go visit my mom more often
I'd go swimming (did I mention that? lol)
I'd go back to school and get my interior designing license
I'd visit my neice and nephew (they're small and loud)
I'd go to church (another biggie that I super miss)
I'd take my daughter to the fair
I'd clean the house from top to bottom and do the laundry
I'd decorate/paint my house
I'd read voraciously (also a biggie--soooo miss that)
Well, that's all I can think of at the moment, but I'm sure I'll come up with more as time goes by.
A New Plan
It's been too long since I've blogged! I've been so busy this past week+ with doctor appointments and shots, so I just haven't been much in the mood for writing, I guess.
So, I went in for trigger shots again (and that turned into a long story that I won't bore you with). Anyway, it stretched into three appointments and on one of these appointments my doctor discussed with me a new approach she'd like us to try. She'd gotten all of my med records, including the ones from the shrink I was seeing in Texas for Post Traumatic Stress Disorder and some other stuff (unrelated).
After looking at these records she said her eyes were opened and she saw some things in there that other docs had overlooked. She doesn't think I have BiPolar either (which I never really thought so either, but I let that doc put me on the medicine, because it puts me to sleep and takes care of my insomnia). Anyway, as far as the headaches go, she is making an appointment for me with a pain management doc. YAAAAAAAAAAAAAAY! We're just going to bypass an appointment with the Neuro altogether. YAAAAAAAAAY! It saves time, money and frustration. Then she also hooked me up with a shrink up here that she says is really good. So, that's good too.
She thinks that the PTSD may be a significant contributing factor to my migraines. That really doesn't surprise me too much, because I have IBS and insomnia from the PTSD.
The thing I like best about this plan is that she's talking to these other docs personally. She's close with both of them, so they'll keep each other in the loop. See, when we see all these specialists the problem is that they look at us as parts, not as whole people. And, I think, because we've been living like this in Western society for so long, that we tend to think of ourselves as parts, not whole. But, the truth is, of course, that we are all body, mind and spirit and the three work together. I am my hand and my hand is me. They're not separated. When my tooth hurts my whole body hurts. When my head hurts my whole body, and my emotions, too, hurt. So, I really like the idea that I'm going to get treated wholistically.
She made sure I understood that she didn't think I was faking the pain (I don't think even Bette Davis, herself, could fake that good), and I did have migraines (no shit), etc. But, she's hoping that a wholistic approach might be better for me than treating this symptom and that symptom and never getting anything done about what's causing the probs.
The only thing that, at first, made me uneasy was that she mentioned a patient, who'd gone to see this pain management doc, had been prescribed Methodone. There are two drugs that I absolutely hate and they are Methodone and Oxycontin. The reason that I hate them is that they're harder to get off of than Heroin. Once you're on those meds, it's almost impossible to get off. But, the way she put it to me was that IF this doc decided that might give me back some semblance of a life, I should accept the prescription. I shouldn't think about "when I get better", because it's likely that I won't. Rather, I should be thinking about doing whatever is necessary to get some quality of life back. She's so right. At this point, I'd let someone slice me from head to foot if it meant that these migs would abate even a little bit. So, now, I even have peace about that.
Anyway, that's the new plan. Very exciting. (Not. lol)
