Doing A Li'l Better
Well, like the title says, I'm doing better. I think the trigger shots helped. My head still hurts, but the pain level is staying around 4 and 5. That's bearable. By "bearable" I mean that if I have to keep from taking the Fioricet, I can deal with the pain.
You know what's scary? I recently started disassociating from the pain when it gets to a 9 or 10. What I mean by that is that I have an out-of-body experience, so it's like I'm looking down at my body going through all the pain. Last time, I had to keep bringing myself back and it was really hard to do, because all I wanted was to be
out of pain.
A long time ago, when I was raped in College, I did the same thing. I know it's just a way that the brain tries to protect you from the pain of what's happening to you, but it's not healthy and not good for you. It really isn't.
I kept telling myself to stay in the here and now. It became a sort of meditative chant. "Stay present, stay present, stay present". Do you know how hard that is to do when you're in so much pain? I just wanted to be out of pain, that's all. I wanted to be out of my body. I wanted to leave the pain behind and go into another place.
I did it, though. I stayed present. I've blogged about the important of Presence before, but I haven't blogged about
staying present. There's a difference.Maybe that'll be my next entry. It's a deep belief of mine and encompasses alot of the other things I've talked about before like
Presence, not thinking
Wishfully, having
Hope, dealing with
Reality. Especially dealing with reality. I'm a practical person and and want to always deal with reality rather than going into denial or living in a fantasy land. But, when you're in extreme pain, it's really not an easy thing to do.
I wonder if other migraneurs have had this same experience or not? If you're a migraneur, please leave a comment and let me know. And if you have had that experience, how did you deal with it?
Oh, So Fun!
I'm sorry I haven't been posting very much lately, but I've just been having a real blast! NOT!!! I'm going through a cluster-headache cycle. You know what those are like? Well, I'm going to give you a short education on it. Imagine a migraine with a pain level of 9 or 10 and multiply it by 50 and you'll have an inkling of the kind of pain you're in with a cluster headache. And, I get them on top of my migraines, so they end up lasting for a long time. Lucky, lucky me. I had to go in for narcotic shots four times last week. My last one was on Sunday and it's starting to wear off. I saw my doc yesterday and she said that I've had enough narcotics this past week to knock out a cow! Ya just gotta laugh! It's so surreal that this is going on. Grrr! I got three trigger shots yesterday, so that, hopefully, will decrease the migraines and I'll mainly just have to contend with the clusters--I hope, I hope. Ok, so that's about all I can write for now. It's back to the couch and icing the noggin.
I'm Just a Woman
I might blog twice today, but I just wanted to say this: I'm only human, I'm just a woman, as the song goes.
You've probably noticed that I swear sometimes. I've only started swearing in the past couple of years and I'll tell you why in a second. I grew up a "good" Christian and as such swearing was like a mortal sin. Well, a couple of years ago I was seeing a really good shrink and she told me that I should start swearing. lol I was totally schocked when she said that, but her reasons were very practical. It has it's place and it's purpose. See, when you swear, you just let out a burst of anger and it just leaves you. It's like giving it back and that way you don't keep all that anger bottled up inside of you. I had, and have alot of anger in me, because of shitty stuff (see?) that happened to me while I was growing up. I always bottled it up inside and it resulted in eating disorders, ulcers,etc. And really, I think I was just faking my way through life with a plastic smile plastered on my face. Being Christian and being "nice" are
not the same thing. So, please don't misunderstand when I swear and then am also talking about God and scriptures. The one has nothing to do with the other in my mind. I'm just being me. The genuine, honest-to-goodness, flawed person that I am and nothing more than that. I'm not a saint and don't purport to be one. I'm not an important person. I'm just a woman and, hopefully, when you see me, you can see yourself, too, as a real person with real feelings and real problems and real flaws and real virtues.
Job's Lament
Job 7.11, 13-15, "11 I cannot keep from speaking. I must express my anguish. I must complain in my bitterness. 13 If I think, `My bed will comfort me, and I will try to forget my misery with sleep,' 14 you shatter me with dreams. You terrify me with visions. 15 I would rather die of strangulation than go on and on like this.
I am really relating to Job in this passage, these days. I should probably do a quick recap on Job's experience, before I go further. Job was a very successful man who had several children and was involved in not only big business, but also a political leader of the time, sort of like an elder statesman, from what I can gather. He tried to lead the best kind of life he could and to be the best kind of man, husband, dad, religious Jew, that he could be. And he was. He had alot of friends, too.
Then, tragedy struck. There was a day when all of his kids gathered together to party (I like to think it was someone's birthday party, but you know young people, they don't really need a reason to have a bash), at one of the kids' home. There happened to be a severe tornado that completely demolished the house and in one day, all of Job's kids died. If that's not bad enough, it gets much worse.
Soon after this tragic incident, Job's business took an enormous hit. Since we're not really in the livestock business today, it's easier to explain it in terms of a corporation. This would be like Donald Trump finding out that all of his accountants embezzled most of his money on the same day that both the stock market crashed and all of his properties were destroyed. So, in a short time span, Job became impoverished and grief-stricken. The only thing he had left in the world were his friends and his wife. When his friends saw what had happened to him, they left for various reasons, the main one being that he must be some kind of sinner (translate that into Loser), so he's getting his just desserts. Only four or five friends remained loyal to them and all of them, but one, had their doubts about Job, too, but they did stick around, so kudos.
Of course, this is a ton of stress and we all know what stress does to the body...yep, you got it, it causes health problems and boy, did Job get sick! This poor guy had boils on every inch of his body. He even had ulcers in his mouth, on his tongue (bet he lost a ton of weight). He was in constant pain and there was no remedy for it. I am certain that having the added burden of grieving over your dead children and losing every worldly possession just compounded his pain and dire, utter despair.
Everyone, of course, had advice for Job. His friends told him he should repent of his sins and God would just restore everything to him. His wife said, why don't you just curse God and die! Just give up, Job! She gets a bad wrap, I think. Anyone who lives with a spouse who's in chronic pain has had this thought cross their minds at the darkest moments, whether or not they'll admit it. I think she just wanted him to be out of pain and torment. It's exhausting to watch the person you love the very most in the world, writhing in pain all the time.
Some people condemn Job for his laments. They're self-righteous nobodies who haven't experienced real, devastating, all-encompassing pain in their lives. Because, if they did, they would, as I do, concede to Job's emotional state. I think he was doing his best to handle the situation in a healthy way. Hell, yeah, you should complain. Moan, complain, bitch, be annoyed, let out the frustration and get mad. Don't keep it inside, man, because that's just going to make the pain and sickness worse. Get it all out there and lay those cards on the table face-up.
I was saying that I can relate to that. I'm taking alot of comfort in these scriptures as bizarre as that may seem. I too am complaining and I'm going to keep complaining until two things happen: A) I get effective treatment to manage my pain; and 2) I affect people and the medical community in such a way as to change their attitudes toward people in chronic pain and especially toward migraneurs.
I, too, can't sleep, because I'm in so much pain. And when I do manage to catch a few zz's, I have nightmares about my head getting pounded on the rocks or on pavement, and corkscrews being driven through my eyes and into my brain. Dreams of blood gushing from my painfull eyes. Dreams of a vice squishing my head until it pops like a pimple and brain matter and blood squirt everywhere. Horrible, horrible nightmares. You try to sleep and it's near impossible when you're in pain.
And, I'm so glad that I'm not the only one who's said that I wish I could've died, rather than go through this. Death would be a blessed relief, compared to living in this daily torture. It's quick and it's permanent. But, notice, that neither Job, nor I, have said that we want to off ourselves. There's a difference. It's just that it's really exhausting and frustrating to have to "go on and on like this", day after long day.
It's also a comfort, and should be for anyone else out there who's wondering what they did to deserve this, that Job, who was considered to be the most righteous guy on the planet, still got a rotten deal. I don't mean that in a mean way. It's just that it's good to know that I'm not getting a raw shake, because of something bad that I've done in the past (though, I can say, I'm no saint, like Job was). It's just that stuff happens. We're not promised a prim-rose path and sunshine every day. As a matter of fact, our ONLY
inalienable rights in our constitution, (and I truly believe that they should be universal rights for every person), is the right to live, to be free and to
pursuit happiness. That's the bottom line, baby.
So, when life hands you lemons, my advice is to throw them back--hard!--and ask for some cherries.
Sleep It Off
I was thinking about the advice I was given yesterday at the doctor's office for my mig. He said, and I quote, "Just go home and sleep it off." What the hell did he think I had, a hangover? See? This is the major problem we have as migraneurs in getting the treatment, the proper treatment, that we need. Just sleep it off. What the hell is that supposed to mean? How do you sleep when you're in excruciating pain? I wish he'd get a migraine--a big one, one that kept him from sleeping for three nights in a row, one that keeps him from responding to a puny amount of medication. Well, what goes around, eventually comes around, I hope. Stupid Fucker! Now, I have to go to the hospital today. My pain level is fluctuating between 7 and 8. I just had to blog about this, because I'm so pissed off about it that it might be making my head worse, so I have to get it out of my system. What an ignorant asshole!
Lame-O Doctors!
I told you the last blog that I was going in for shots. Well, I did and you know what? They gave me half of the dosage on my usual treatment. By midnight, I was back in a bad state of migraine pain. So, I went through two days with the pain levels fluctuating between 6-8. So, today, I went back in to get another treatment. I didn't know that last time they gave me the wrong doses. I thought that my mig had just been so bad that the meds weren't helping very much. Well, the same thing happened this morning, except that I figured it out before I left the office. I told the nurse that I didn't feel improved and how much of the dilauded did they give me? She said half of what I normally get, because that's what they gave me a few days ago when I went in. I said, well, no wonder I'm back in here already, you're giving me the wrong dose. So, she talked to the doctor (mine was out sick, so I had to see her partner) and he wasn't willing to give me anymore medicine. I couldn't believe it! So, all day now, I've been sitting here in total pain. I called a doctor on call and he told me that I could take some fioricet on top of the dilauded I got. He was surprised and said that he couldn't believe that they gave me such a small dose! So, most likely, I'm going to end up in the hospital this weekend. Grrr! Why can't these doctors get their asses in gear and their act's together? Why is there no compassion in the medical field? I just don't get this at all and I'm really pissed off, because I've been royally screwed twice this week! Just another thing to add to the list of frustrations.
Goin' To the Chapel--Well, Not Really
You know that song: "Goin' to the Chapel"? Well, here's my version:
"Because I'm goin' to the doctors
and I'm gonna get narcotics
Goin' to the doctors, and I'm
Gonna get knocked out
Gee, I really hate those shots
But I really need them
So I'm goin' to the doctor's today
Bells do ring and the lights are too bright
Yeah, yeah, yeah, I'm in it's grips and it's grip is tight
It seems like it's going on until the end of time
I'm goin' to the doctors today."
I really am. This migraine is out of control and the meds aren't helping. I'm so tired. I've been going to sleep at 3 am every night, because of the pain and because of my daughter. I'm waking up at 7 am in pain. This sucks, but I have to do it. I need a break from the pain and I need relief. I'm just in real trouble here, so I have to ask for help.
I was up last night with mig until 3 am. Then I fell asleep for awhile, until I was awakened at 9 am with a bad mig. It's just a never ending cycle at this point and I really need some kind of an intervention. Wonder if a labotomy would help?
On the upside, our private insurance FINALLY kicked in today. Hoorah! That means that I call my doc yesterday and she's going to set me up with a pain management specialist in Stockton. It'll be a long drive and that'll suck, but if he can help me out at all or at least have something new that I can try, it would be worth it.
I almost went to the ER earlier today, but no one was around to take me. Ugh! I do have dilauded here (about 10 pills), but I'm not sure it would work without the tordal. If worse came to worse though, and I didn't have anyone around to drive me to the ER for shots, I'd take it. Plus, my daughter's home for summer vaca and she's having really bad asthma right now. I just can't be unconscious while she's awake--or when she's asleep. Last night she started throwing up because the attack was so bad. We had to do a breathing treatment. It's really hard to sleep when you think your baby's going to choke to death or stop breathing in the middle of the night. Poor kid. My head's a little better right now, probably because I've been swallowing fioricet like it's going out of style today, so I'm feeling pain, but I don't care about it. I'm too stoned to care. lol
That's it for today. My head's just hurting too bad to write anymore.
Are You Bored Yet?
Are you as bored as I am hearing me say that my head hurts? God! I'm so sick of this. It's just so old and no end in sight. I've got to figure out how I'm going to handle this for the rest of my life? I wish I were in denial or something, then I could just ignore it.
Anyway, my head hurt really bad again today. I was tempted to take the dilauded and just knock myself out today. I haven't taken it yet. So, I didn't do it today either. I'll save it for when my migs are at a 9. Anyway, I just took fioricet all day long, which really bothers me, because looking at my diary, I've taken that for the past three days in a row. I'm not supposed to do that. I'm supposed to take it only 3 days a week prn. And you know what? The stuff sucks anyway. It takes at least 2 hours to start working on me and when it does, it doesn't take the pain away, it just keeps it from going up and getting worse, so I'm still in alot of pain.
Am I boring you yet, cuz I sure as hell am boring myself!?!
London Blast
Oh, how horrible! I feel so bad for the Brits. I just can't believe this is happening again to the World Community. It completely disabled their transportation system which, as we know, is the whole point to disable their economy. This is just the worst.
I hope that our peaceful Muslim communities will begin to make their views on this visible in the media now. So far, we haven't seen any clerics or Muslim leaders take a public stance on the terrorism. I wish they would, because I know there is alot of disapproval in the community toward violence. My question is, why don't they
say something about it? It would go such a long way toward thwarting the bigotry that has arisen against the Muslim people in our country. I'm not saying that they have to defend themselves, I'm saying that they need to condemn what's going on with the terrorists, so that it could effect change and also change people's attitudes toward Muslims in general. I hope that makes sense.
My other fear is that if this terrorism inside our countries doesn't stop, we will go to a police state and that can lead to other major problems. Fortunately Bush's administration seems to be able to keep that notion off the table, so far. I hope it never comes to that. It probably won't, I'm just being paranoid.
I never talk about political things on this blog, because it's very personal and this isn't the forum for it, but in light of what happened today, I just needed to get that out of my system and make a statement about it. Believe me, I could say alot more on this subject. Let's keep the Brits and their government in our prayers that there would not be any further violence and attacks and that their government would have wisdom and that justice and right will prevail. God will win and the devil will lose.
On a Bender?
Last night my occular migraines were so bad that I had them in both eyes. It broke alot of blood vessels in my eyes, so they were completely red and made me look like I'd been on a total bender. Wish I could laugh about that, because it is kind of funny considering how rarely I drink. Today isn't a whole lot better.
I haven't been getting very much sleep recently. My daughter has asthma which is usually controlled, but this past week has been really bad for her, especially over the weekend. Of course our doc's office wasn't open over the holiday, since last Wednesday in fact, so my husband took her into the doc's office this morning. It's really scary when your kid has asthma, because all you think about is what if she stops breathing at night or wakes up with an attack during the night. Of course, she did wake up with attacks and we had to get out the nebulizer, which is a machine that delivers albuterol directly to her lungs and relieves the constriction. So, I can't sleep when she's like that, because I spend the whole night listening for her asthma attacks and worrying about her. And of course one of the worst things for a migraneur is going without sleep.
I have an aura today as well as the occulars, so I know that I'm in for a really rough day. It's not the kind of thing you want to look forward to, you know? All I can do is try to distract myself from the impending doom and hope for the best. It's wishful thinking, which I've written about in the past, I think in January, but every once in awhile I allow myself to indulge in it. It's probably just a step up from having a pity party, which I also sometimes allow myself to indulge in, but try not to.
On a totally unrelated topic, I've decided that it's time for my GP to get educated on migraines, so I printed out a list of resources for her and hopefully she'll spend some time in research. I know that homework's the last thing anyone wants to do after work, but I had to do it all the time in my job, so I'm not expecting more of her than I would expect of myself. I didn't overload her with sites. I just gave her the best ones that I know of:
www.headaches.org/consumer/topicsheets/migraine.html
www.midas-migraine.net
www.migraine.org.uk
and a couple of blogs, in case she wants to know how they affect different individuals.
I've just got to get her to really know how to treat it more effectively and what's out there as treatments. I know she understands how much pain I'm in all the time, thank goodness. For those of you who don't keep a migraine diary, I really recommend it. It's important for them to see what your pain levels are on a daily basis and what meds are or aren't working for you.
Right now, I'm on stupid little old fashioned meds that aren't doing much for me (Fioricet and Imitrex). The Imitrex helps, but it costs $200/shot, and if I used it like I'm supposed to, about 2x/week, I just can't afford it. So, I rely on Fioricet quite a bit, but I can only take that three days a week, because it causes rebounds. So, the other days, I'm supposed to just remain in extreme pain all day long. I can't do that. I'd end up in ER about every other day, so I don't always take it as prescribed. I try to wait as long as I can to take it, because I don't want the rebounds, but that's not good either, because it's more effective if you take your meds at the first sign of migraine. I'm caught in this vicious cycle with no end in sight right now, and that's really what gets me frustrated.
Feminism in Medicine
The fact is that migraines are still considered a "woman's" problem. This brings me back to a topic near and dear to my heart, (since it was my minor), feminism. Women's "problems", historically, have always take a back seat to men's. You would think we were more enlightened in these modern times, but the "old school" is still in charge of the regime and, let's face it, it's still an ol' boy's club.
When a woman has migraines it's labeled as "hormonal", "mental disorder", "laziness" or "an excuse to get out of doing stuff", "hysteria" (I really hate that one), "hypochondriacism", or "it's all in her head". When will we break down the barriers in medicine? We've broken down barriers in the work field, in education, and recently, in ministry, but the fact is that the medical profession continues to remain seemingly untouched and unchanged. Shouldn't the same rules of equality apply here?
When we go to see a doctor, the first thing I've noticed, (especially if it's a man), that seems to enter their subconscious is that we're victims or we're just looking for attention, and, subconsciously or consciously, that's how we're treated. You get a sense of it from the eye-rolling, the sighs, the flat out refusal of any effective therapies. They tell us what to do, instead of advise. They keep us in the dark and it's very rare to find a doctor who'll actually teach you about what's going on in your own body. Hell, it's rare to find one that will even do their research to figure out what's wrong with you. We typically have to research that ourselves. There's very little power given us to make informed decisions, when we don't even understand what's happening to our own bodies. We're disbelieved and given business cards to psychologists offices. These attitudes and this conditioning fosters the disempowerment of women in our country.
No one knows your body like you do and it's been my experience that women listen to their bodies more intimately than men do. I mean, how many of us have to pull teeth to get our husband's into the doctor's office? We, women, have such an innate intuition regarding our bodies. I've heard, countless times, women who've said, "I just knew something was different" or "I just felt like something was wrong". I've heard so many women who've had cancer say that.
Usually, when we go to our doctors and tell him that we get, at the very least, a raised eyebrow, meaning, "You're wasting my time, because you feel off? Go take a pregnancy test." Am I right? I've had personal experience with this and it took me 9 months and somewhere between 6-8 doctors to finally get someone to listen to me, and he diagnosed me with Gall Bladder Failure after one test! But, I'd been telling my doctors that I thought I had gallstones or something was wrong with my gallbladder that entire time! I almost lost my life, because of the pervasiveness of these attitudes toward women and our health.
It's most fortunate that more and more women are entering the trenches of the medical field. It's not easy competing against men in medical school and takes a special brand of hutspah. I have a great deal of respect for these women, who,after twenty plus years are still pioneering in this career track. The professors are predisposed toward the men and women have to work twice as hard to gain the same grades, respect and footing as their male counterparts. I'm sure it's like wading through sludge to break down the gender-bias in that institution. Just as it was before, during, and even after the Civil Right's Movement for Blacks. Just like it is for women in any non-traditionally female oriented career field. (God, when are we ever going to get to the point where we earn just as much as a man does? When will the glass ceiling actually disappear? Just as a side note, did you know that women earn only $1 for every $3 that men earn? We earn 1/3 of what they earn! WTF is up with that?)
It's wonderful that women are really becoming a presence, finally, in the medical field. Now, if we can just get the women to get through their schooling without adopting the typical male authoritarian attitudes of their professors, and actually champion for better treatment, care, research, etc. for women, and the advancement of women's issues, then our empowerment would be quickly gained.
I'm not saying that there aren't any out there, trying to make a difference, because I think that that's at least a portion of why women choose to go into such a challenging profession, whether they admit it or not. It can be a strong forum to advocate for other women. I think that my doctor is one of those women who tries to advocate for women, and is compassionate toward her patients. It's just that I'd like to encourage more women to take an active role in creating change from within the establishment to bring about more effective care, better research for women's diseases, better strategies for empowering the patient and for patient education.
I'm Dissappointed with My Doc's Advice
I have to say, tonight, that I'm kind of disappointed in my gp. I mean, I love her and she's very compassionate to what I go through. I'm impressed with her, because she's dealing with my migraines with little to no understanding of them and as we all know it's a huge challenge.
But, recently, she told me she didn't think I should go to Rhonda's site anymore, because her fear is that it would depress me. For those who don't know, Rhonda's is like a support group on the web. Believe me, if I could travel, I'd go to a support group to deal with the issues I have to deal with.
I don't find it at all depressing. Actually, I think it's really empowering, because when you can find a treatment that you haven't tried before and has worked for others, or when you can learn a new coping skill, or when you can share what's worked for you treatment-wise and coping methods, or when you're just having a shitty day and in complete pain and you get others telling you to hang in there and not give up, it lifts my spirits and makes me feel alot better. And when I can do that for others, it makes me feel like I have some purpose in my life, instead of just being a blob on the couch in the dark.
I wonder if I had cancer, would she have told me not to join a support group? I am surprised when doctors say things like that with such authority, when she hasn't even looked at the site that I've gone to. If I had a disease that had visible pathology, like Cancer, AIDS, paralyses, etc., I don't think that that's the advice she would've given. I think she would've urged me to go to a support group.
This is one of the examples of biasness that I have seen over the past couple of years in the medical field where they just don't really understand that migraine is just as much of a disease as Cancer or Parkinsons. The unfortunate thing is that this malady is frustrating, because it's incurable. We have cures, helpful meds and assistance or therapies for pretty much every other kind of disease in the world.
Just because you can't see it, doesn't mean it's not real. You can't see the air, but we know it's real, because we see the effects: the trees swaying in the breeze, the fact that we can breathe, etc. It's invisible, yet it's real. A little too real.
I told her that the only reason I haven't been going on that site recently is because I've been so bummed out that I didn't want to drag anyone else down with me. I know there are other members on that site that do the same thing. But, I was thinking today, that maybe if I did go back to going on the site, asking for help when I need it, telling my cyber-friends at the "support" group what I'm going through, I wouldn't have gotten so down in the dumps about it.
So, I'm not going to accept that "advice"/"order", whatever it was, and I'm going to go back on that site from time to time when I feel the need for it.
