Happy Memorial Day
What can you say about the men and women who've given their lives for the peace of, not only this country, but the many oppressed countries of the world? It brings tears to the eyes and welling up of pride in the soul to think of their bravery, honor, and selflessness.
So, thank you to all our men and women in the armed forces. Thank you for defending my life, my liberty, and my right to pursue happiness. Words cannot convey the depth of admiration and appreciation I have for you.
Crying, Crying, Crying
Know what I dislike most about Fioricet? It makes me so weepy. Ugh! I've never been a super emotional person, being left brained and all that, but now, I cry at the drop of a hat. It's so embarrassing. Well, here's why I'm crying today:
So, I called the dentist's office that was going to work on my teeth (if you remember, they're about two hours away), and thank God I did, because they had cancelled my appointment and, of course, didn't call to let me know. Jerks! The dentist said that he didn't want to do the work because of my chronic migraines. I started bawling, because my tooth is killing me!
They referred me to the Uni of Fresno, which is a 4 hour drive away. It's a teaching hospital. So, I called Dr. J's office at the Uni and he was really nice, actually. He thought it was pretty lame that that dentist wouldn't do the extractions (I mean, come on, how hard is it?). But, I think this is going to turn into a blessing in disguise That doesn't mean there's a silver lining on every cloud, so don't get any big ideas. I'm still a cynic.
When I get scheduled and go in for the appointment I'll be going through the ER dept, just in case of complications. I can, if my gp agrees to it, get the narc shots before I go, so that I can sleep and have a more comfortable drive on the way there. Thank you Jesus! I'll probably even sleep through my wait in the ER, I hope!
Once I'm there, they'll knock me out and give me a drug that will keep me from remembering a thing. Afterward, once they wake me up, I might be able to get another narc shot to get me home.
Now, if I can just deal with the pain until then... Don't ya just hate dental stuff? I have a total phobia about going to the dentist's office. I think it's because I had a really bad experience when I was in my early twenties. Didn't have any dental problems my whole life, until I had my daughter. The stinker just sucked up all my calcium! lol Now, I'm positive that the problems I have with my teeth, (they actually break off in little pieces all the time), is because of all the medication that I have to take. It makes my teeth brittle. Just another lovely side effect and another problem I can attribute to Migraines.
Can you see how having this disease affects every single area of our lives and every part of our bodies? I'm beginning to believe that it's the worst disease on earth, honestly. Cancer can be cured or you die from it. AIDS, same thing. Alzheimers, you just don't know what's going on and it's not painful. Just think of any disease or impairment you know about and can they really compare to the daily torture that migraneurs go through? We don't have a cure. We won't die from it, unless we blow our brains out. There's very little help for the pain. We don't have ANY attention from lobbyists or even the medical community, therefore no funding to find answers. What a bitch.
Good Night, Sweetheart
Well it's 2 o'clock in the morning.... Ok, I'm not really going to sing the song, even though it is one of my faves. I'm awake because my tooth is killing me and therefore, of course, my head started hurting pretty bad. I took a vicodin about an hour and a half ago. Didn't help, so I just took another one. The doc wanted me to take it for the toothache. I'm sitting here, exhausted because I didn't sleep well last night either, and had to deal with a bad mig all day long, unable to sleep because I'm in pain. And, I'm wondering, can I take a couple fioricet for the migraine, even though I took vicodin? I can't call a pharmacist, obviously. I tried calling the hospital once for med advice and they told me they're not allowed to give you advice on how to take your meds or even how far apart to take the medications, etc. It's a sad day when you can't even call a hospital for help, because they're afraid they'll get sued.
Well, I'll wait another half hour and if things don't improve, I'm going to take some fioricet. *sigh* All in the day of the life of a migraneur. Fun, fun, fun.
Boredom
God, I'm bored! I'm boring, too. My life at the moment consists of watching tv, blogging, and playing the Sims. It hurts so bad to move. Just getting up and walking to the bathroom sends me into agony in my brain. Can you imagine? When is this going to end? I can't imagine spending the rest of my life like this. Would you be able to do it? I mean, what's the point? It's good that I have Stu and Liv, because otherwise, I'd probably just kill myself. Well, maybe not, but it seems like my life is kind of worthless, because I'm so unproductive right now. Life really sucks. I wish I could be cured.
The Truth About Imitrex
I should preface this blog by telling you that I had to go in for shots, again, on Friday. Usually those shots last about 3 days, in which I have no pain. This time it only lasted two days. This morning I woke up with a migraine. As per doctor's orders, I gave myself an Imitrex injection right away.
Now, first of all, doing that first thing is a drag, a royal drag. I was extremely nauseous to the point of dry heaves and just feeling horrible in general. The Imitrex really does work, but I thought I'd let you know what I have to go through, when I inject myself with the Imitrex to become pain free. If you watch the ads for Imitrex, you see women dancing and running after their kids with big smiles on their faces. It's all bullshit. I'm basically out of pain, but I'm certainly not smiling and there's no friggen way I want to run around or dance.
Aside from the fact that I have to inject myself with a big, fat needle, which is painful, I have the following symptoms. First, I get a tight pain in my neck and it travels up from there, through my brain, to the front of my head. This goes on for about 15 minutes. Then, my legs feel like they've just disappeared from my body, like I'm paralyzed from the thighs down. Then it feels like my brain is being squeezed to bursting by an iron vice. This goes on for about half an hour. Then the twisting begins and my brain feels like it's being wound like a rubberband, just twisting and twisting. That goes on for about 15 minutes or so. Then my head just generally hurts, with most of the pain being toward the neck and brain stem. And that's how it stays, a dull ache. I'm basically trading excruciating pain for a dull ache.
Now, I don't want to discourage anyone from using Imitrex, because it truly does work and it really is a good drug. But, my point is that just because you can take a medication for migraine, it doesn't mean that it's a cure or even an easy solution. It amazes me that to get to where you can handle the pain, you still have to go through excruciating pain to get there. I mean, can you imagine having a separate, yet almost equal, pain on top of having a migraine? It's torture. But, the relief is blessed. I honestly don't know how migraneurs who can still work, but get a mig at work, and give themselves this injection, can continue to work after they get it. I'm humbled before those people. I certainly couldn't do it.
So, that's the truth about Imitrex and now I'm going to go back to bed and lay down.
Being Empowered
I think it's important for people with chronic illness to feel empowered, especially over their own care. That's why I write about how to deal with dippy doctors and the beaurocratic nonsense that their offices put us through. The waiting. The idiotic statements. The cursory visits and assinine diagnoses. All of these things make you feel so powerless. We don't need to feel more powerless than we already do. It's hard enough having a disease that we have no control over and are powerless against. We don't need that kind of treatment, and, more importantly, we don't need to put up with that kind of treatment from any of our caregivers.
I've been thinking about how being "Equal to the task" would apply to that. Really, that means that we are empowered to manage our own medical care. When a doctor wants us to try a med that we've already tried and know it doesn't work for us, we need to stand up for ourselves and say no. Anything that makes us uncomfortable, we don't have to do. I mean, the doctor's not going to have to live with the consequences. We are.
Also, we should understand not only the method of treatment we are being advised to get, but also the reasoning behind it. I've had doctors get really annoyed when I've asked to see my charts, or for them to explain why they think I need to do such and such, or why they think it'll work. It's as if my opinion doesn't count. As if I should just follow the suggestions like a dumb sheep. I'm not a sheep, and I do want to know what's happening with my own body. I don't give a damn who's ego gets bruised. It's my body and I have the final say so about what happens with it.
I remember once when I went to see a pulmonologist. My GP wanted me to see him, because she wanted to see if I had asthma. Well, I guess I have a little, which I already knew. I always get it when I have bronchitis, which I had at the time. This pulmo wanted me to do a treatment on the v--something (I'll put it in when I remember what the equipment is called). I said that was fine as long as he does not use proventil, because it made me feel so weird when I had it before and made me dizzy. He assured me that they wouldn't. Well, guess what? He did and I had a very serious allergic reaction to it. I told them that I wanted to go downstairs to the hospital. I said, Take me to ER. They didn't. And, worse, they didn't do anything for me. The nurses wrapped me in a blanket, because my temp plumeted. They were super scared, but because a doctor told them not to take me downstairs, they didn't. Now, who should they have listened to? They're lucky I didn't die of anaphylactic shock! One nurse came in and "snuck" me some benadryl. How sad that she had to risk her job to help me. That helped enough that I could walk after a little bit and I took myself downstairs to the ER.
I learned a big lesson from that incident. No doctor will ever have that much power over me again. If I don't like the guy (or gal)'s attitude, I'm outty. I just wish more people would do that. Instead, we cower in awe of these guys who are just college graduates. It's not that special. All kinds of guys and gals graduated from college with masters and doctorates. It's no big deal, but they act like it is more important a job than teaching or anything else. I'm not saying that it's not a noble profession, and of course they serve a purpose in society that is important. But, that doesn't mean we have to let them walk all over us like we're doormats, just meekly believing that whatever they say is right. Bullshit!
So, I guess in a way, I have learned to be "equal to the task", and I'm sure I'll learn alot more about that by the time this is over--whenever that is.
Equal to the Task
I hope you don't mind if I interpret and paraphrase the following scriptures from the Bible:
Phillipians 4.11-13, "...I have learned in every situation to be content, for I have learned the secret to contentedness. It is knowing that I am equal to the task (or trial) that I'm in through the empowerment of Jesus Christ, being self-sufficient and satisfied through Him."I have never really considered myself equal to the task of being ill and dealing with it. It's definately an area in which I fall far short. Yet, if I am to believe in one scripture of the bible, then I must believe that all scriptures are there for my comfort, improvement and example. Therefore, logically, I have to believe that I am equal to this task. Yet, at this time, I am not. Perhaps one day, I will be.
However, I do think I've made the first step toward contentedness in that I have learned to accept my circumstances. I know that this illness may never go away, and I've accepted that. I know that there's no cure or magic pill to take away the pain, and I've accepted that. I know that often I have to accept the help of others, and I've accepted that. I've accepted all of this, because if I didn't I would go insane.
Life does not give us the right to happiness. We are not entitled to it. My age group is the generation of Entitlement. We expect to "have it all", and if we can't get it ourselves, then we expect the government to give it to us. We demand that they make us happy. It's a juvenile attitude and so is our behavior, nevertheless it's reality and a sad comment on our character.
Even our constitution, written in the wisdom of our forefathers, does not promise us happiness. Rather the constitution tells us that we have the "right to pursue happiness". It's something that we have to work hard for, strive for, look for and find on our own merits. There's no guarantee that we'll actually find it.
I have a feeling that if we can find satisfaction of whatever circumstance we're in in life, we will probably have another key to peace. And I think that acceptance may be the first step on the road toward finding contentment. There are alot of dips and valleys and scary shadowy places to pass through on the way and alot of times, I trip and fall, but as long as I continue to seek it and pursue after this goal, I am being proactive and I
can find contentment in
that.
Good Dream Last Night
Finally, I had a good dream sans bulls or cement last night. Yay! I dreamt that Steven Tyler was going to come visit my fam and bring Aerosmith with him, but, for some reason, he wasn't able to make it, so they just sent Joe Perry (guitarist, the one with the long black hair). It was so awesome! Wish it was true. I love that band! Oh, and my husband was my favorite soap star, Maurice Benard (lucky me, cuz he's a hottie), from General Hospital (it's the only story I ever watch and I love it. Never miss an episode, unless I'm on drugs or in the ER). Just don't tell Stu. He'll get jealous. lol
Still woke up with a mig and the ole head felt really crappy all day long. I'm feeling pretty good right now, though--two glasses of wine, a fioricet and a vicodin. I know, I know, I shouldn't be doing that and it's abusing my meds or whatever, but I don't care at this point. I just want and need to be pf for a little bit. Did I tell you that my doc's going to be gone for two weeks? Means if I need a major intervention I'll have to go to the ER and fight with the docs there. I hope I can bite the bullet for that long, because my trigger shots are wearing off and the pain is getting more intense again. I can't get an appt with her until she gets back from her vaca or whatever. A little worried, but not at the moment. At the moment, I'm not too worried about a whole lot. lol
Well, I'm going to go to bed and hopefully wake up without a mig in the morning. I hope that every night, but it never actually works. C'est la vie.
That's Such a Cliche
I'm really getting tired of hearing all the cliches that people pass out like tic-tacs, without even thinking about what they're saying or the effect it might have on the person being forced to listen to it. For instance:
"I know there's a reason for everything that happens." No there's not! Why do people say and believe this? I mean, it's so fallacic that I don't even know where to start, but people believe in it like it's a religious tenet.
"There's a silver lining on every raincloud" No there isn't! I for one have never seen silver outlining a cloud.
"There must be a reason for this" No there isn't! And they say this one like it's your fault somehow that you're in the shape you're in. Like, what'd you do, what kind of sin did you commit to deserve this? Hah! Either that, or they say it like someday you're going to find out that you've reached sainthood by suffering in this life. Like God has some hidden purpose for putting you through hell on earth. (By the way, I don't believe that God causes bad things to happen to you. I'm just saying that that's the intention behind this cliche.)
"Things can't get worse than they are now for you" When anyone says this it makes me shudder, because I know that things can get a whole lot worse in the blink of an eye.
"Just think positively" Ok, and then what? I'm going to miraculously get better through the power of positive thinking? Up yours!
"God has a plan for your life and he'll reveal it someday." When? After I'm dead? And how is it that my being in daily torture is in His plan? Pretty sure that his plans don't include this. Hope he has a contingency plan if it does.
"Shit happens!" Now, here's one that I
can ascribe to. It's exactly right. There's no divine conception to make my life a living hell. There are no rainbows or pots of gold that I can count on to come to my rescue at the last moment. Things can get worse than they are now and every time my migraines get worse or I get a new symptom, I'm reminded of this fact. And there isn't a reason for everything. Not every question we have is answerable. If it was, we wouldn't need scientists, inventors or philosophers. Sometimes, stuff just happens because it just does. There's no reason for it. And, God does have plans for my life and he's already revealed it in his Word and it states clearly that his plans are for good in my life and not for evil. Those plans clearly do not include wanting me to be in pain nor peril every day of my life. (Still hope He keeps a plan B around, though). It's just that stuff just happens.
So, please, stop handing me these platitudes like they're pain killers, because it's not helping. They don't make sense. They're like Old Wives Tales, passed down from mom's to their children to ease their pains, but that doesn't make them truisms.
And if that's not enough to make you shut-up, I just don't flippin' want to hear it anymore! I honestly have given up looking for reasons, plans, lightning bolts, miracles, etc. It doesn't have to "make sense" to me anymore. And it'll make you nuts to continue trying to find a reason or cause for the problem, look for a quick fix miracle, or try to force some answer to pop out of the blue. If you can just accept the fact that I'm in pain, that there's no cure, that there's nothing you can do other than offer emotional support and true compassion and empathy, that it's no one's fault, just luck o' the draw, then you can have more peace. Then I can have peace, because I won't have to listen to all the pop-psychology-psychobabble-off-the-wall-new-age-illogical-birdbrained-nonsense that you all prattle off so easily without knowing one bit what it's actually like to be in chronic pain.
Nightmares
I don't know why I haven't been writing. I had writer's block or something. But, I'm writing now, so, ok.
I've started having these nightmares. Just what I need another recurring dream, right? Ok, well, in one of them a bull is gouging his horns into my eye and trying to pull it out with the curly part. The other one is of someone taking my head and banging it on the concrete and just continuing to crack my head on the concrete. I swear there should be a new classification in the psychology reference books titled, Post Traumatic Migraine Disorder.
The correlation between the dreams and my life are pretty obvious. When I dream about the bull, I wake up with an occular migraine. The other one wakes me up with a horrible migraine.
The migraines have been waking me up between 3-6 am every morning. It sucks. For one thing, I am NOT a morning person. And for the other, obviously, who wants to be woken up with the thought that their head is being cracked on the sidewalk over and over again?
I told my husband that I thought I had PTMD and he responded, "How is it *post*?" He's right. It's not behind me. I'm living this hell right now, so I guess you'd just drop the *post*.
I'm a tad peeved though, because it's only been a couple of years since I got rid of the recurring nightmare that I was dying in a concentration camp. Now, that's being replaced with these new dreams. Ugh! What's the point of going to sleep if you can't sleep? Or if you're woken up a couple hours later with blinding pain? Grrr.
Well, 'night all, pleasant dreams.
Down the Rabbit Hole
I've written about what auras are like in other posts. They're exceptionally uncomfortable and include visual disturbance, extreme nausea and vomitting, extreme chill, leaking from the nose, and a host of other symptoms unique to each individual. However, this is the most bizarre form of aura that I have yet heard of and I thought I'd share it with you:
"Alice in Wonderland syndrome: A syndrome of distorted space, time and body image. The patient with the Alice in Wonderland syndrome has a feeling that their entire body or parts of it have been altered in shape and size. The syndrome is usually associated with visual hallucinations. The majority of patients with the syndrome have a family history of migraine headache or have overt migraine themselves.
The syndrome was first described in 1955 by the English psychiatrist John Todd (1914-1987). Todd named it, of course, for Alice's Adventures in Wonderland by Lewis Carroll. Perhaps not coincidentally, Lewis Carroll suffered from severe migraine. Also known as a Lilliputian hallucination."
I'm trying, but no cigars
Well, I've been trying to think of something meaningful or at least benignly interesting to say, but, honestly I can't think of a damn thing. I'm having trouble remembering the words for stuff. Not really when I'm writing, but when I'm speaking. The worst thing is that I've been trying to call my mom for three days. I've always known my mom's number by heart, because I call her alot. When I couldn't get hold of her, I called my brother and he told me that I was dialling the wrong number! (Thank god, no one answered!) So, now I'm going to call her and she's going to tell me that she thought I was mad at her or didn't love her because I didn't call on mom's day. Oy!
I could whine some more. I could always whine. lol Like, my tooth still hurts and won't get taken care of until sometime in June. I had horrible occular migraines all day yesterday. My eye feels like it was being pulled out by the nerves. I'm nauseous again and my target shots are wearing off (Wah!).
Or, I could tell you about my mom's day card. It was totally adorable and I love it. Stu has these great pictures of the Beatles, because he was a member of their fan club (Did I ever tell you he's 14 years older than I am?). Anyway, he had a picture of John with his '69 hair do, recording Let It Be in the Apple Studios. And he put it on photo shop and put some text on it: "I've got a feeling, it's mother's day for you, oh yeah" (imagine the song, "I've Got A Feeling" by Paul McCartney). I thought that was cute. Loved it! Then the stu's side of the family got together for brunch. I wish I could've enjoyed that, but the smells, Ugh! I HAD to make myself eat, though, because my daughter had helped her Aunt make crepes and eggs (I'm allergic to eggs). So, I just went home and took some phenergan afterward. Then I slept for hours, because the phenergan knocks me out.
I think that there should be some kind of cosmic rule that says that diseases aren't allowed to mess up our lives on the holidays, don't you? C'est la vie.
So, anyway, that's why I haven't been writing too much. Writer's jam, I guess.
More Pain
I'm waking up between 3 and 6 am with major migraines. I think it's interesting that I get them on the top of the head and in the temples. I never really realized that before, because the pain in the back of my head was so severe.
Another symptom I've been having since that bizarre episode, is that while I'm sleeping, one side of my body will fall asleep. It gets very uncomfortable and kind of feels like it feels when you bang your elbow against something, only it runs down my whole side of my body. And it occurs when my mig starts to get really bad. So, when I try to turn over, it's excruciating and makes me cry--which of course doesn't help the mig. It's really hard to turn over too. It feels like I'm pressing against 50 lb weights to turn over. Ugh!
So, this is just friggin great! Just what I needed, another symptom to add to the damn list. The only good thing is (Pollyanna moment here) that the migs seem to get better by mid to late afternoon, so I haven't been taking as much medication and I am rarely taking the fioricet. They don't take away the pain, but they do make it a little more tolerable--sometimes. I'm not taking the heavy duty meds, because I've noticed that the migs are going away in the afternoon and I'm a tough bird and feel like enduring the pain until it goes away, unless the pl gets to an 8 or 9, in which case I try the meds and if they don't work I go to the docs for a shot, but that's only happened once so far, although, yesterday I seriously considered it. But, considering what I was told at the last appointment I had, I don't feel like I can go back for shots and I don't want to go to the hospital, because, well, you know, I've blogged about that before.
Today, I'm on fioricet, though and will probably need an imitrex shot in awhile if it doesn't start kicking in. Gosh, I have to go to the dentist's today, too. I'm dreading the drive down more than the poking and prodding by the dentist. It doesn't help that I can't eat, because my tooth is so painful. Oh, and they were nice enough to inform me yesterday that this appt is just for x-rays and med history. In order to get my teeth worked on (I have two cavities, I'm sure and two broken teeth, because of all the meds I'm on), I'll most likely have to wait until june. There's only one dentist in town that will take state insurance and they're totally booked up with the indigent and poor. I can't believe I'm so poor. We went from making %50-60K per year to $11,000. Stu was pulling in $24K at his job and I made significantly more, so when I lost my job and our med bills climbed to $20K (our part of our insurance because of meds and a %20 deductible on hospital visits, you can imagine how many of those I had), well, you can see why we had to move in with family. This totally bites!
What's Good for the Goose
I woke up with a pl6 migraine today, so I'm in a pissy mood already. Then, I see some medical forms that Stu left out for me to fill in and sign. No prob, so I did it. Then I come against the form that ALWAYS, without fail, pisses me off! It's the Broken Appointment/Late Appointment Policy that so many doctor's offices want you to sign these days. WHO THE HELL DO THEY THINK THEY ARE? I know who, they think they're God and the rest of us are peons. Well, let me tell you what, I don't much fuckin' care for that fuckin' attitude!
So, awhile back, I decided to make my own policy and whenever I get an asshole doctor who gives me a policy like that to sign, I give him mine. Wanna know what it says?
"It is my policy to receive 24-hour notice of a rescheduled or cancelled appointment. This enables me to fill that time with another important appointment. Not allowing for this will result in a NO-SHOW. Two missed appointments will result in your loss of my business. Please don't hesitate to call me at (###) ###-#### if you must reschedule or cancel.
"Doctors who are late 20 minutes or more, may need their appointment rescheduled, or will be charged $1 per minute after 20 minutes, or $160 if I have to wait an hour, because that is what my time is worth. If I'm nice and I decide to reschedule with you, because you've made me wait 20 minutes, then the appointment will be considered a NO-SHOW. I expect the same concern and high regard for my time that you expect of me for yours.
If you understand and agree to the above terms, please sign and date below..."
I think I was extremely generous in giving them a 20 minute curtain. They usually reschedule you if you're 10 minutes late. You should see the looks I receive, or the comments they make when I expect them to sign the form. It's hysterical. So, hey, what's good for the goose is good for the gander.
