Protecting
Recently, I saw a post on a migraine forum I visit. It read something like this, "Do you find your self pretending things are fine or watering down your pain level to protect the people around you." My first reaction was, "Hell, no!" I mean, why would I do that? It perpetuates the problem of not being taken seriously about your disease. I don't think I understood what she was saying, the way she meant it.
Today, I had a blinding pain in my head. One of those migraines, actually it was probably a cluster headache, that knocks you to your knees. I've been taking fioricet since 6:30 this morning and the pain level just won't go below 7. I was sweating, (and I never sweat, because I have a disease that keeps me cold constantly), because the pain was so strong before I took the meds. I am so nauseaus that I didn't eat today. Oh, wait, I take that back, I had about a 1/4 cup of Kraft mac-n-cheese. It was leftover from a couple of days ago, so I only had to nuke it. It's my current comfort food. Usually, my comfort food is chicken wan-tan soup, but I switched to m-n-c, recently. I'm so nauseaus it's not even funny. Ok, so I have to wrap this up, because my head's whining.
Anyway, I didn't tell my husband or daughter how bad it was. (Btw, I've named my migraine, Ghengis Khan, so if I call it that, you'll know why). When the pain gets really bad, I just went in the bathroom and paced. It's a small bathroom, but it's good for about 4 paces, before I have to turn around. And I washed my face with cold water. Then I came back out with an, "I'm ok, not great, but ok" attitude.
So, humbled, I have to admit that, yes, I do try to protect my loved ones.
I only have one more thing to say and that is that, I really need a narcotic that I can keep around the house that I can use when things get this bad. All I can think about today is how much I want to be able to give myself the narc cocktail and just sink into peaceful, painless, bliss. I'm starting to get desperate, which is what I was worried about, because I still have a week to go until I see that pain management doctor. I have a strong feeling that I'm not going to make it without a narc cocktail before then.
Gotta go take some drugs, now.
I Want a Divorce
I've really been thinking about it and I've decided that I want a divorce...from my migraine. It's controlling and won't let me do anything that I want to do. It's humourless and they don't make me laugh. It's so unsexy. It abuses me and causes me to be in pain all the time, constantly. I wish there was a shelter for women who're abused by their brains. I'd be the first one in the door. The migraine has cut me off from all my friends and the good times. Now, even my holidays are tainted with pain. It's changed my appearance. I was looking in the mirror this morning and couldn't believe how grey my hair is. My brow was furrowed, because I've been fighting with this migraine since 1 am and am in barely controlled pain right now. It's ruined me financially, because it loves to spend money on doctors, medications, tests, treatments, gas expense, etc.
Why am I still in this relationship, you might ask? Well, simply because I don't have a choice. I wish that I could kick this disease to the curb like I did my first husband. I wish there was a way that I could have an affair with Relief, at least, but I can't cheat on it, either. It's got me on a cruelly short leash. My bedfellows are pain and drugs. They say that politics makes for strange bedfellows; but I think that chronic pain has even stranger ones. This threesome has got to stop. I really want a divorce.
Dopey Nightmare
Ok, I did go in for narcotic shots the other day. They worked really well and I was out of pain within two minutes like usual--thank goodness. Now comes the nightmare.
So, I go home and sleep for a few hours, right? Well, I guess the nightmare began when my daughter came home with homework. She needed help on it. I could hardly see straight and putting a couple of sentences, that made sense, together was virtually impossible! So, here I am, looking at her homework and the letters are jumping around all over the page. I finally had to have her read it to me. And then, she had to read each sentence about 3 times to me until I understood it well enough to explain it to her. Then, of course, she needed to do some research for her essay. So, I had to try to show her how to do that on the pc. Keep in mind that I can't see straight. By this point, I was thoroughly frustrated, and she was too, because she didn't know how to do it. It was all I could do to keep that frustration in check and not let it boil over into temper. It took two hours, but we finally did finish her homework! Then, of course, I had to supervise her dinner, otherwise, if it was up to her, she'd just eat a corndog and ice-cream and call that a meal. (Go ahead, you can laugh at that part. Kids!) Finally, I fall asleep on the couch until my hubby comes home. Of course, my daughter hadn't gone to bed on time and that was my fault for not keeping up with her. (My hubby didn't blame me for that. He just asked about it.) So, that was nightmare numero uno, but it gets worse.
Yesterday, when all I wanted to do was sleep, I was woken up with a phone call from my panicky husband telling me that our daughter had been dropped from her insurance and her medicine which she needs is really expensive, blah, blah, blah. To make a long story short, I was the designated hitter to deal with it. So, I made the necessary phone calls and did the obligatory waiting on hold, then being passed around to three different departments only to find out that they'd lost all the paperwork we'd sent in. I was really pissed off, by this point. But, still, you can't get pissed off at the only person who could help you out, right? So, I just told her that she needed to look around for it again, since we'd turned it in by hand. So, I have to stay awake until she calls back, right? An hour later she called back to say that they'd found it on the receptionist's desk. It's really inexcusable, since we dropped that off at the beginning of July!
Meanwhile, I have to call our bankruptcy attorneys to find out how much else we owe and of course have to go through the same thing with calling three different phone numbers to get hold of the right department, then being put on hold only to be told that they'd have to get back to me. So, I have to stay awake for 2 hours to receive a call back on that. By this point, I'm thoroughly stressed out and pissed off, because of not only the situations, but also the frustration of how hard it was to concentrate. I felt like I was asking everyone to repeat stuff at least twice. By then, I was irate and couldn't get back to sleep for another hour. This left me with one hour before my daughter would come home from school and need help with her homework again. I was so exhausted! And I still am.
So, how am I doing today? Well, I have a stiff neck, my butt hurts from the shots, my tailbone is really sore for some weird reason, and my migraine is already coming back. Usually, I get to have at least three pain free days after I get a narcotics cocktail. Not this time. The pain started returning yesterday, off and on. *sigh* Just can't catch a break sometimes, you know?
Bad Luck
Well, it's just my luck that there's a forest fire today. My head's killing me, so this will be short. I just want to whine. My sinuses are stuffed up and i have a sinus headache to boot. I'm going to give this a couple of days to hopefully settle down, but if it doesn't I'm going to call my doc and see if she can do another trigger shot, in case that's the problem and it didn't take. Or, I'm going to go in for a narc shot, depending on how bad this thing gets. Who knows, I could end up in ER tomorrow if this continues to get worse. Ugh! Hate these kinds of days.
Oh, one more thing that I noticed today. My fioricet has lasted 2 months! I really don't take it that much. Probably why my pain level is so high so much of the time. I'm stubborn and don't take it until it gets really bad. Some people might think that I should take it at the first sign of a migraine, and they'd be right. However if I did that, I'd be taking it all the time, constantly throughout the day. Fioricet has a major rebound effect, because of the caffeine in it, so I don't want to, nor is it prescribed to, take it everyday. I'm supposed to take it only three times a week. This just isn't workin'. I don't deserve to be in pain constantly. I really need a break. I hope this new pain management doctor will be able to prescribe something stronger to decrease the pain level. I really hope that he won't be another in a long line of pricks.
Well, Did it Work?
Yup. My plan worked and I didn't feel too much pain until late last night, from the shots. Today my head is very achy, but that's par for the course. It'll be like that for another day or so and then I'll have a couple days with no pain at all, until the pain starts to gradually build again.
Can you believe that I'd let myself be put through this just to have 2 pain free days? I've gotta laugh, because otherwise I'd cry. Doesn't that say anything to anyone about the level of pain I'm in on a daily basis? Who would allow someone to stick a 5" needle, the thickness of an embroidery needle, squeezing a thick, burning liquid into their head for the hell of it? Only someone from the psych wing, maybe...oh, and me! lol It's pretty pathetic to have to go through those kinds of measure to have a couple of pain free days, isn't it? There just has to be a better method or more options with longer lasting results for me. Or, is this it and I just have to accept my fate? Well, if that ends up being the case, then I will accept it, but until I find out it's so, I'm going to keep looking for a regimen, treatment or some kind of therapy that will work for me.
My Devious Plan
Tomorrow is the day before my next trigger shots. Last time, I ended up having to get a narcotics treatment after the trigger shots, because I went in with a migraine already and getting the shots on top of that, just sent me over the edge.
So, this time I have a plan. I have two dilauded suppositories left. I am going to take those tomorrow and take some phenergan. In effect, I'm going to knock myself out for the day on purpose. In this way, I hope to go into my TS appointment with only a minimal migraine, if any. And, I will take my imitrex with me to the appointment in case I need it afterward.
At my last TS appointment, I nearly passed out when the needle went in and it wasn't my doc's fault. I told them that I didn't have a migraine, when in fact it was at a 7, because I knew that I needed the shots and she won't give me the shots when I have a migraine, for obvious reasons. Because, I have to rely on others for my transportation, if I couldn't get my shots on that specific day, I would've had to wait another week and I was desperate for some relief, even if it does only last a week.
So, on Tuesday morning, the morning of my appointment, I will take fioricet and 800 mgs of Ibuprofen at home. Then, if I need it, after I get my shots, I will use my last remaining injection of my precious Imitrex. I think that I can get through this with that combination of stonishness (I just made up a new word, lol).
My head has been absolutely killing me for 3 days, fluctuating between pain levels of 7-9. I thought about going to ER yesterday, but instead opted to take my fioricet and phenergan with a wine cooler. This is not healthy to resort to these means to get relief from pain. It means, I strongly believe, that I am seriously undermedicated and undertreated. I hope this will change when I see that pain management doctor. This will be my last trigger shot until then. I'm worried, because they only hold down the pain and nausea for two weeks. I'm going to be in real trouble by the time my appointment rolls around. Big trouble.
However, I have recently accepted my situation. I realize that I can't worry any more about what could happen. After all, what could be worse than what I'm going through now? And I can't fear anything. I don't fear anything. I am living anyone's worst nightmare. What is left to fear after that? And, if this doctor turns out to be a prick, well that's nothing new, either. It's funny, but inside, I have complete peace because of those things that I just mentioned. You have to laugh that it took this circumstance to rid myself of fear and worry. lol
The Countdown
I have only 3 more days until my next trigger shot. I'm barely holding on, here, so it can't come soon enough. These will be my last trigger shots before I go to the pain management doctor. I hope that I can last until that appointment without a visit to the ER or the doc's office for shots.
There are only 19 days left until I see this new pain management doctor. The days are going by so slowly, it seems. As if they are purposely dragging on so that I have to wait and wait and wait to see this guy who may or may not be able or willing to help me. It's like being in constant suspense, waiting for that appointment to come up.
Not a Good Head Day
I am in alot of pain today. My migraine is at a 7 right now and on top of that, I have the joy of having an occular migraine in my right eye that has a pain level of 9 and nausea to boot. I can always tell when my migraine is getting bad, because I start thinking about my medications and can't get them out of my head. It is almost like I crave them when the pain level reaches a 6.
Then, I have to make a decision. Do I take the fioricet which is cheap and I can afford to refill, or do I take a shot of my precious Imitrex of which the supply is dwindling fast and which I can not afford to refill at $200 bucks per injection. Obviously, the choice, most of the time is the Fioricet. It is a fairly ineffective medication that only halts the migraine at the pain level it is at when I take it. That means that my pain level, if the medication works, will remain at a 7 for the rest of the day.
Last night the pain level was at an 8 and my limbs and neck started constricting. It was really weird. I took two fioricet and a phenergan and swallowed them down with a wine cooler. I basically had to knock myself out to get out of the pain. This is no way to live.
I am literally counting down the days (20) until I see this new pain management doctor. Although I am cynical that he could help me at all, I still am anticipating going to see him. Who knows, but I might get lucky with this guy. I'm not going to let myself get too hopeful, because I don't want to be disappointed when he says the same ol', same ol'. You know the drill: "Are you a type A personality"; "You're addicted to drugs, etc."; "Just get used to it"; "You don't need an MRI"; "It's all in your head"; "Have you tried (insert drug name); "It's not a real illness, it's just psychosomatic. Lots of women have psychosomatic diseases. (Translation: You're hormonal and/or hysterical.)". Of course, if any one of those sentences is stated, I'll be outta there faster than I can say, "Up yours!".
I have 4 days until my next trigger shot appointment. That helps a little for about 5 days and keeps the pain level at a steady 5 for almost two weeks. I can't wait.
Empathy
I'm asking myself, "How is Empathy different from Compassion? What are the differences? Are there differences between the two?" I have decided to meditate on this subject and find out. I want to know what it really means to Empathize with another being. Is there a difference, also, between Empathy and Sympathy? I say yes, there is.
The difference between being empathetic and being sympathetic is quite clear to me. Sympathy is when you have pity on another being. You feel badly for them when things go wrong. It is sort of a passive emotion. There isn't necessarily any action involved in it. It is as if you were looking through a window at what is happening inside. It's not a personal involvement in the situation being observed. The difference between Empathy and Sympathy is vast.
Empathy is the action of involving yourself in the suffering of another. It is almost like it's a shield or a defense of the validity and reality of a person's pain. Whereas sympathy is seperately removed from the situation; Empathy actually gets right into the situation and provides love, nourishment and comfort. Picture a mother with her baby. She knows what it needs-attention, love, nurturing, comforting and gives that selflessly, no matter how she herself feels, to her child. Doesn't that also sound alot like compassion? Empathy is showing compassion by example.
Empathy is the feeling that one gets when one has greatly suffered, himself, and can relate to what another suffering being is going through. They may not have gone through the
exact same thing, but they can understand the kind of hell and torment that you feel when you have suffered loss, illness, or some other devastation in your life. It is the feeling that you get when you think, "Hey, I've walked in those moccasins. I know the feeling of those rocks poking into my feet, the thirst along the way, the exhaustion and the knowledge that there may be no end in sight." You can, literally, feel the struggle and the pain, because you have either been there or are in the midst of your own battle right now.
In order for us to develop true compassion, we must, first, have developed Empathy. Empathy is a facet of knowledge. It requires listening and attention. It is the
key to compassion. Again it is a practice that we develop in order to mature. We become aware of the sad experiences of others. We can experience, vicariously, their pain and suffering. Empathy, the word, comes from the Greek,
empatheia, which means, quite literally,
passion.
When you look back at history, you can see that all social change and revolution is ignited by passion, by the empathy of the oppressed. Slaves travelled to the north, by dangerous means, encountering numerous trials and harsh circumstances, in order to spread the message that serious change was necessary. To make men understand that it is wrong to enslave any person, regardless of race or creed. Fredrick Douglass, Harriet Tubman are only a couple of the instigators of change among the handful. They became instruments of life changing reform and they had been, themselves oppressed. In fact, they worked for this change in the midst of their oppression, because they knew the suffering that others just like them were going through.
If you look at Martin Luther King and Rosa Parks among many others, you can see that out of their own oppression, grew the civil rights movement that to this day continues to change lives.
Ghandi is another man who effected change. He knew what it was like to be oppressed from his experiences as a third class citizen in South Africa. Because of him, a movement for the abolishment of apartheid began in South Africa and was finished many decades later. But the reform had begun, because he was empathetic to the suffering and the oppression. Then, he went on to become one of the greatest revolutionaries of our time, by adopting the Non-violence, Non-cooperation principle to effect change from within his own country.
Jesus Christ was another famous revolutionary, preaching freedom from spiritual slavery and oppression. His cause was to effect change, not necessarily from a country, though he did have an effect on that, but, rather, to effect change within the heart. The most important of his message is that we can approach God ourselves, without having to go through a middle-man (ie, a priest, to recieve forgiveness, comfort, nurturing, love. This was a revolutionary message at his time and still is though, for the most part, we take that message for granted as our right, today. Yet, he was oppressed and even gave his life, like so many other activists, for his cause. That is why his death is called, The
Passion of Christ. It was passion and empathy that drove him. He felt the suffering and the pain. He knew what it was like to be in pain, to be impoverished, to be enslaved and to be killed.
All of these leaders were willing to give up their own lives, to suffer imprisonment, ridicule and torture in order to further a cause that would release individuals from suffering. That very passion is the definition of Empathy. Why? Because they knew there was a
desperate need for the oppressed to have an advocate who understood exactly what they were experiencing.
The only difference I find between Compassion and Empathy is that you have to have empathy in order to practice Compassion. Both require active participation.
Finally, a Good Day!
I actually had a good day today. For the first time since December, I experienced a pain free day and I am basking in the luxury. I'm so easy to please. lol
Online Support for Spouses
I set up an online forum for the spouses and caregivers of migraneurs, including children who suffer. It will include clusterheads and those who suffer from chronic daily headache as well. I'll be adding links to resources and so forth in the future, but if anyone reads this blog, I just thought I'd let you know about it and perhaps you could pass it along to friends, etc.
Here you go:
http://forums.delphiforums.com/haspousesuppor1
What is Compassion?
In reading my past blogs, (which I did today for some comfort and it worked), I've noticed that I write alot about compassion, yet, I've never actually described
what Compassion truly is. I'm going to try to explain it today, mainly for my own education.
Compassion and love are the motivation to exert courage, have hope, persist in the face of adversity and develop inner strength. In the Buddhist and Christian traditions, compassion and love are seen as two aspects of same thing: compassion is the wish for another being to be freed from their state of suffering; love is wanting them to have happiness and fulfillment in their emotional and spiritual growth, as well as the sweetness of temporal success. Notice that neither has anything to do with "wish" fulfillment. Rather, they deal with the reality of the particular present of each being. Compassion is not the end all, beat all; it is, rather, the path and the means to ultimate personal fullfillment.
Compassion is not sentiment but is making justice and doing works of mercy. Compassion is not a moral commandment but a flow and overflow of the fullest human and divine energies. --
Matthew Fox When we fully develop compassion there is no room in our heart for hatred, pettiness, jealousy and pride. The caring and concern for your fellow man outweighs these weaknesses that we all have in our hearts. Whether or not we like to admit it, we have all experienced these habits at one time or another. There is a saying that "Love conquers all" and it is so true. The Bible says that "Love covers a multitude of sins". We have no choice but to give up those sins, especially the one of pride, when we are motivated solely by compassion.
Compassion is the ultimate and most meaningful embodiment of emotional maturity. It is through compassion that a person achieves the highest peak and deepest reach in his or her search for self-fulfillment. --
Arthur Jersild Compassion, as is love, is limitless in it's capacity. It's not concerned with timing, with the place, with the culture or the faults and limitations of the other person. This is also the definition of "Grace". Grace is unmerited favor. It is showing concern even if the object of our compassion has not met our expectations. Compassion is a life-long pursuit, an education that lasts until the day we depart this world. It's not an overnight conversion. It takes daily practice.
The Lord is gracious and full of compassion, slow to anger and abounding in mercy and loving-kindness. --
Psalm 145.8Compassion is very personal. I think that the better you know someone, the more significant are the effects of the compassion you show. It is also more difficult, for some reason, than showing compassion toward a general mass of people. This may be due to the fact that we have certain expectations of the individuals we know and when they fail to meet them we are disappointed. How many times have we said, "Well, I can't feel too sorry for her. She basically brought this on herself by doing something so stupid." or, "Well, look at the way he lives? Of course that happened to him." or "There must be something she did in the past to cause this current situation to happen." See, we know their circumstances. That is also the reaction that migraneurs tend to receive from our health care professionals. That is why we are accused of being drug-seekers, attention grabbers, or the old standby, "It's all in your head." (Der.)
But, how do we develop Compassion? First, we have to curb our tempers. Oh, such a tough thing to do when you're not feeling well! I've spoken before about the righteous anger and that's not what I'm talking about now. Right now, I'm talking about annoyance and pettiness. I'm talking mainly about curbing the tongue so that we don't negatively affect the individuals around us, by being angry with them. It's especially difficult when you're on medication that has this as a side effect. When you have irritability as a side effect of your medication on top of the irritability you have from the pain, it's nearly impossible to do. It takes strenuous effort.
Next, we have to take action to show compassion toward our loved ones. But, what if you're the one that needs the compassion. In actuality, we have the more difficult job to show compassion. One way that we can do this is to realize how hard it is for them to see us, day after day, in constant, unending pain, without the possibility that that pain will ever be eased, knowing that there is nothing that they can do to take it away. As it does we, it tests their patience, their faith, their hope, and they develop the same frustrations that we do. When they show compassion for us, reaching deep inside themselves to find the energy and make the effort, however ineffective that may be, we have to show them that just the effort means the world to us, acknowledging that we could not endure the chronic illness without their love and steadfastness.
One of the most significant ways that we can show true compassion is through praying for the suffering of others, because what we can't do, God can. I forget that sometimes and when I do it, it doesn't always feel effective. But, I have to remember that that is because it isn't effective
because I prayed. Rather, it is effective because God heard it and He does the work.
Compassion is the keen awareness of the interdependence of all things. --
Thomas Merton Compassion is the sister of Love, and Grace is it's cousin. As such it is not passive, just a feeling that you can send in a greeting card. It is an activity that we try to cultivate on a daily basis. We must forgive ourselves and others when we falter in this practice, realizing that that is why it is called a "practice". However, making the effort to cultivate it, as we would make an effort to cultivate a garden, will result in the blossoms of kind-heartedness, spiritual maturity, self-sacrifice, (not martyrdom), and gracious mercy.
The whole purpose of religion is to facilitate love and compassion, patience, tolerance, humility, forgiveness. --
H.H. the Dalai Lama
The Untouchables
As migraneurs, we don't get the kind of treatment that we need. It's probably one of the biggest, unnecessary travesties that we have to deal with. The lack of education in the medical profession regarding this subject is also very frustrating.
It's a real problem when you have an "invisible" disease. However, I always try to keep in the back of my mind that if I had cancer pain, they would prescribe morphine and demoral and whatever they could to ease the pain, whether or not it was addictive. I just lost track of that this past week, because my discussion with my doctor shook me up so much.
It's only because our disease is invisible, that we are taken less seriously than patients with, say, M.S. Cancer, Parkinsons, A.L.S. or Diabetes. It's because we "can't die" from it. Well, to me, that's the horrible part of this disease. We don't go into remission, the treatment is negligible, and the great majority of us
don't have the option, or the mercy, of dying from it. That's the tormenting part about it. It's like we live in a perpetual state of limbo, either receiving limited care and negligible relief or not receiving any care or compassion at all. We are the untouchables in our supposedly
classless society.
This must change. Somehow, our society
must become enlightened to the plight of chronic pain patients. How will this happen if not through the portals of higher education? The schools have to start teaching and training their medical students on how to treat chronic pain patients, emotionally and physically. They have to open their minds to the strong fact that there are diseases of unknown etimology and without the pathology that our current technology can detect. There are genetic disorders and diseases that are
invisible, undetectable, yet can be treated if the doctor would just be open to learning about them. When that happens, then we will begin to see doctors come up with new ways of treating migraneur patients, new inventions, new drugs (and hopefully many that are not addictive). They could be an instrument of changing people's lives, instead of instruments of judgement, harrassment and the causes of more pain than the patient is already in. Therefore, humility is another of the keys to compassion.
I'm Being a Wuss
You know what? I've decided that I'm just being a complete wuss! It doesn't matter what anyone else thinks about me. If I can't get the help I need from the caregivers that I have now, I'll just have to find new ones. This is complete bullshit and I'm not in the mood to just lie down and take it in the ass! I'm sick of not getting the help I need.
I know I'm not the easiest patient in the world, because I have so many allergies to drugs and I have other health problems that complicate what I can take from the list of migraine medications. But, I certainly haven't tried all of the ones that could be possible and right now, I'm not only under-medicated for the pain, but the meds I have are totally ineffective and completely outdated.
It's time for these people to get with the program and do something to really help me. Maybe this new pain management doctor that I'm going to see in September will help me out. I just wish I didn't have to wait until September to get the help I need. And, the worst part, maybe, is that I have no confidence that he will be able to help me. I've lost all faith whatsoever in the medical profession when it comes to migraines. Maybe going in with no expectations will be good, because when he can't help me, I won't feel so surprised and disappointed.
Can you tell I'm a little pissed off today? It's partly the pain talking, but mostly it's the frustration and accompanying anger pouring out. Well, guess that's what this blog is for.
May I, Please, Have a New Brain?
My head hurts pretty bad today. Still not taking any meds for it and right now, I really want something to take the pain away. I don't know if I'm doing the right thing or not, so if any of my readers have an opinion on it, now's the time to speak up. Thanks. Oh, man, it's just really hurting.
Owie, owie, owie!
Oh, me bloomin' noggin' is hurtin' so badly! I'm still not going to take any meds for it. I'm testing out a theory, remember? Ack!
Heavy Subject
Well, I got my trigger shots on Tuesday, which means that I have a small window of time until the pain returns to read. I'm reading All in My Head by Paula Kamen and so far, I love it. It's so reaffirming to know that I'm not the only one who experiences the sexual discrimination in the medical arena, the only one who goes through asking why and what's the point?, the only one who has doctors who are scraping the bottom of the barrel and trying to pull rabbits out of their hats to treat the agony I'm in daily. I'm only on pg. 36 and already, I feel a sense of empowerment and I'm loving this book. I feel less alone in this daily struggle.
One of the things in my life that constantly irritates me, having been a former anorexic in my youth, is the amount of weight I've gained over the past two years. At first, I'd gained weight from taking a drug that was supposed to be a preventive, Neurontin *shudders*. As soon as I discontinued the drug, I lost the ten pounds that I'd gained. But, now, I've gained 30 pounds over the past year and it drives me nuts! I am 30 pounds over my ideal weight and it bugs the hell out of me.
Ms. Kamen talks about all the weight she gained from the various drugs they had her on for her migraines. All of a sudden, it dawned on me that I've been taking Lamictal for a year. The exact amount of time that I've gained 30 pounds. I couldn't figure out how I could've gained weight when I'm so nauseous that I eat like a bird. This drug, I believe, has changed my set point and by not being able to workout an hour a day like I used to, the weight has just piled on!
Believe it or not, as crazy as this may sound to some, I would rather be in pain than gain weight. Now, I wouldn't want to be at a pain level of 8 or above, but I would lay on the couch squirming with pain, if it meant that the only alternative was taking drugs that made me gain weight. I'm going to call my doc next week and make another appointment with her to discuss my options. I know it would take awhile to get off the Lamictal, which does little more than ease my anxiety and makes me lethargic to boot, but I'm willing to do it. It's just not worth it to me. I'm sure there is another med out there that can ease anxiety and help me sleep without making me gain weight. I'm discontinuing my use of promethazine, too, as I've noticed that even though it gets rid of my nausea, it also makes me hungry.
Besides, if I'm addicted to drugs and that's the reason I have migraines (according to her), then it stands to reason that if I discontinue my meds, the migraines would go away. Let's really test out this doctor's theory, shall we?
Trigger Shots--again
I'm going in for another set of trigger shots tomorrow. For those who don't know what that is, I'll try to describe it, even though I don't know the name of one of the medications that they inject. I'll ask again tomorrow.
What they do is get this long needle, pretty big in diameter as needles go, and the fill the syringe with lidocaine and marcaine. The lidocaine is a local anesthetic and the marcaine is an anesthetic that lasts for a long time.
My migraines start in my occipital lobes, which get really swollen with fluid and irritate the nearby nerves, which are located at the base of the skill, right at the apex of your neck and your head. So, they insert the needle into the head, next to the occipital lobe. It hurts like hell, especially if your doc hasn't been doing it for a long time, like mine hasn't.
It burns while they squirt in the medicine, but then it gets numb back there. For three days afterward, I'm usually on my back, laying on ice-packs to fight the soreness. The first day is the worst, because the aching keeps me up all night long. After that, though, things get alot better. I usually have a day without any pain at all. Then the pain returns, but it's at a much lower degree than usual. The pl usually is at a 5 or less. And if it gets any higher than a 5, I take Fioricet and the migraine typically goes away within about half an hour to an hour. Right now, it lasts about 2 weeks, before I have to have it done again. When I saw my migraine pain management doctor in Texas, the pain left for a month and if I had any pain, I could just take 800 mg of Ibuprofen and it would go away. Anyway, that's what I'm going to have done tomorrow and none too soon, if you asked me.
Update on Hubby
Last night, after reading the literature on the difference between addiction and dependence, my husband claimed that he didn't remember saying that I am addicted and that he didn't think he'd ever said that. He did, but I decided to accept that as an apology. It's the closest he'd ever get to one anyway, because in all the times I've known him, I've heard him apologize, like saying "I'm sorry for (whatever)", only a handful of times. Anyway, I'm cooled off now and the main thing that I wanted was for him to get educated before we see this new specialist, and that's what is happening. I just don't want to have to advocate with the doctor and not be able to trust that my hubby will back me up 100%. That's too much! So, as long as he reads the information I printed out for him, I'll know that he does love me and I'll be able to trust him again. It's all good.
Taming the Tongue
"It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate,
I am the captain of my soul."This stanza was written by a famous author, sometime in the mid to late 1800's. His name was William Ernest Henley.
The word "strait" means narrow, difficult, rigorous and confining. It's not the same as "straight", which means free from curves.They are two completely different words.
Having said that, if you spend time studying and thinking about this verse you will learn some very interesting things.
First, life
is a difficult and strenuous passage ("strait"), fraught with peril and all manner of evils. Life is not easy, full of pitfalls, distractions, pain, pride, etc. But, there are openings through the barriers, that we find ourselves up against, only it is up to us to find those doors, or "gates" and figure out how to go through them. However filled, even to capacity, with suffering, pain and loss ("punishments" {not necessarily a retribution for wrong doing, as in the belief in reincarnation and Karma}), we are told that we will be, by some message delivered by someone else attempting to write our script (the scroll), or by our own actions, I have the control over my outcome. And, most importantly, I have control over my personality and emotions. This verse is not talking about the physical or temporal plane.
For instance, take the parent who tells their child, throughout his upbringing, that he'll be a loser, won't amount to anything and will always be good for nothing. The child believes and accepts it as fact, until he becomes of an accountable age where he sees that the way he turns out and the way he views life is wholly up to him. We all go through the same process. We can either believe what others say about us, "You're lazy and want to get out of work", "You're a drug addict and will be that way forever", "You just want attention." Or we can believe the truth that we know about ourselves and walk confidently in that knowledge.
We don't have a choice in the range of difficulty of the path we are on. What we do have control over is how we are going to handle those situations and how we will conduct ourselves. Therefore, if this verse is true, then it stands to reason that whatever another human being tells you about yourself, or your future, is flawed and most of the time completely invalid. We can make it valid by choosing to believe the hogwash. We all know ourselves and our bodies, though some of us are more in tune to our basic natures than others. When you know exactly the kind of man/woman that you are and the truth about yourself, then, and only then, will you be confident to be your own master and the captain in charge of your personality and emotions, your soul.
There is a verse in The Holy Bible, King James Version, (
James 3.2),that has this to say about talking,(paraphrased): if a man can tame his tongue so that it doesn't offend in any way, then that man can control/guide/tame his whole body.
It's an important concept and when you think of it is just a fancier way of another of our sayings, "The less said, the better."
This is probably the MOST difficult practice in our lifetime! Benjamin Franklin used to keep a "Virtues" diary with him at all times, in which he listed all of the virtues. One of those virtues was speech. He would ask himself each day, is what I said important, does it have merit, did it hurt anyone, did it edify anyone? He would check off his list and score himself daily and weekly to find out what areas he lacks character in. It's so amazing to me that he took the time to do this. Now, that's a man truly motivated to be a better person!
It is quite difficult to hold your tongue when really you want to lash out at someone. It is difficult to keep from saying everything that pops into your mind. But, if you begin to practice this type of deep meditation study, you will really listen to what you are saying and about 90% of it is unnecessary or mean or petty, just babble to hear ourselves talk, or just simply uninteresting.
Taming my speech is one of the reasons that I prefer to write than to chatter. When you write, everything you write is filtered through your mind. You can go back and delete or change words until you are putting across exactly what you mean. When you're speaking you can't take back your words. Once they're out, they're really out! But, when you write, there is a purpose to what you write, giving it it's significance.
Ouch!
My head is killin' me today and it's getting worse. The meds, of course, aren't working. Guh! I thought about going to the hospital earlier, but I was just there two weeks ago and I don't have the energy to advocate for myself today, if they give me any guff about it. I'm between a rock and a hardplace today. Damn, I hate these kinds of days.
Dependency vs. Addiction
I thought I'd post this, because it explains the difference between chemical dependency and chemical addiction. It's an excellent explanation and I think it will bring peace to more people. When you have the truth in you about yourself, the truth will always liberate you. It gives you the impetus to be yourself, to advocate for yourself and gives you the stability of a rock in your convictions.
"The difference between addiction and dependency is really quite simple. A drug-dependent person has
improved function with their use of the drug while the drug-addicted person does not.
An addict uses a drug compulsively, despite the fact that it causes harm — the key component of addiction. Most smokers know cigarettes are damaging to their health. Most want to quit, but can’t overcome the cravings to the drug (nicotine).
Dependence is a physical state that occurs when the
lack of a drug causes the body to have a reaction. A good example is a heavy coffee drinker. If one is used to drinking several cups of coffee each day, they soon learn about physical dependence when they suddenly miss a day or two. This does not mean they are addicted to the caffeine; it only means the body is surprised not to see what it has come to expect.
As any diabetic will testify about insulin, or any heart patient will testify about blood pressure medication, dependence is not necessarily indicative of addiction. In fact,
regular use of these medications is essential for good health. Addiction and physical dependence often can occur together. But you can have addiction without physical dependence, and physical dependence without addiction."
Here is the link: http://www.gdcada.org/ask/askA.htm
I will never again allow anyone to tell me I'm a drug addict. No one will ever get away with that without hearing quite a bit about it from me. If I have to let loose my anger on someone for opening their fool mouths, then so be it. I can't help what people think, but I can control how people treat me and I should be treated with the same respect and dignity as anyone else.
Would someone tell a diabetic that they're a drug addict because they have to shoot up with insulin four times a day? Would they say that to a cancer patient who has to have a morphine IV or has to get those injections several times a day to ease their pain? I've never heard of anyone ragging on those patients for having to take powerful medications. So, I don't have to put up with it either. Migraine is a real disease and it's been proven scientifically that there are three specific genes that affect migraines. That should be good enough for anyone to change how they behave toward migraneurs. Here's the link for that information, too: http://www.migraines.org/myth/mythreal.htm
OH MY GOD!!!
I just can't believe I'm hearing this from my own husband! He's been going through all of this shit with me for two damn years and now I'm hearing this! It's unbelievable. The other night he said he thought that my body just wanted drugs. He doesn't think I'm doing it on purpose, but that it's a subconscious thing because of everything I've been through in my life. He thinks the major reason why I have the migraines is because of all the abuse I had when I was younger and because I have PTSS (Post Traumatic Stress Syndrome/Disorder, whatever). I said that I've had that my whole life and I never had migraines before my accident! What the hell? Then he told me that alot of health problems could just be overcome mentally by "talking to the migraines" or "positive thinking". I just couldn't believe that I was hearing this from him.
I'm so furious, I'm thinking about moving out for awhile. I just can't believe I'm hearing this from him. So, I talked to him about how that made me feel when he said that. I mean, it's NOT something that I can control and by saying that I could overcome it if I wanted to is ridiculous. It's not right. But, stubbornly, he stuck to what he said.
I am so hurt right now. He will never understand completely the damage this has caused to our relationship. If there was one person that I needed in my corner, it's my husband. Why is he doing this now?
Then he said that it's obvious that my body wants narcotics all the time, because we've tried most of the migraine meds,
that I can take, on the market and none of the ones I've tried have worked. Well,
excuse me, but I have other health problems that keep me from being able to try every single one of the migraine meds.
Then he gives me the card of this woman he met who said that she used to have migraines everyday until she went to some conference and learned to talk to her migraines and they immediately went away. What a crock of bull shit! I am so furious with him right now. And, I think I've fallen out of being in-love with him, because of this. I love him and care about what happens to him, but this was it. I've absolutely had it. I would leave right now, if I could, but he is a good dad to my daughter, so that's basically out of the question. I might go stay at my mom's for a week though. I need some space from him. I never thought I'd hear these words come from his mouth.
Oh, The Things You'll Hear
Thought I'd post some of the worst comments migraneurs have heard about their disease. The pathetic thing is that the very worst ones are made by Doctors and their staff. I got this information from people who responded to the question, "What are the worst comments you've received about your disease?". It was asked specifically of migraneurs. I'm not mentioning their names, because I don't think that's nice, but they're real people from a migraine forum that I regularly go to online. Here ya go:
I am a "drug-addicted skank" who is too lazy to work full time.
Oh, my, we know so much now about treatment, migraines are just not a real problem any more! (From a neurologist)
It won't kill you. Go home. (From the ER)
Crying will only make it worse. Now, get out of this room; I need it for a
real patient. (After Doctor sent patient to ER)
We have treatments for that now" (Doc/Neurologist, can't remember which)
"Go home and sleep. Sleep is the only way to get rid of a migraine." -(PA at ER)
"Your migraines are inconvenient for others." (Professor)
"Oh well, you have to suck it up " (Family Doc)
"You can't let migraines rule your life" ( a friend)
"Haven't they found out what's wrong with you yet?" ( a friend)
"Are you sure her problems aren't just mental?" ( a friend to another friend about the migraneur)
I am a "stressed out moody worry-wart who doesn't know how to relax" ( a doctor)
“A lot of women have headaches.” (doctor)
"You're just a drug addict, no better than a heroin addict, you know that don't you?" ( a brother)
I was some kind of "delicate flower" ( a nurse)
I only get migraines "when things don't go my way" ( a husband)
"You are faking the migraines so you can take drugs." (a boyfriend)
"The migraines are only going to get worse, so get used to them." ( a doctor)
"You know, you can't be coming in here all the time to get shots" (note: this migraneur had not had a demerol shot in over 2 years, and she was vomitting in a pink basin when the doctor said this to her)
"You know, there are patients here that are
really sick… You just have a headache" (a nurse)
"DO YOU NEED AN ASPIRINE?" ( a doctor, ER)
"well, if there's nothing showing up in your bloodwork it must be psychosomatic. Alot of women have psychosomatic problems you know." (a nurse, ER)
"It was all in my head. Take some Tylenol" (ER doctor)
One doc told me to run around the block when I have a miagraine. (This is the worst. I've heard something similar myself when a doctor recommended that I work out as soon as I felt like I was getting a migraine. I took his suggestion the next time and I ended up in the hospital.)
"You're lazy. You're just trying to get out of going to work." ( a bf she was supporting financially 100%)
Here's a couple of mine, though I've heard others:
"Oh, you're just a drug addict. No one is in that kind of pain from a migraine." (ER doctor)
"Just go home and sleep it off." (Doctor)
"I need you to get out of this room. We need it for someone who's
really sick." (ER doctor)
Ok, and here's one of my favorites, only I have to tell you that my GI doctor told me this when I was suffering from my gall bladder shutting down. He wouldn't believe me about how much pain I was in and where the pain was at, and here's what he told me, "You're just depressed and need to see a psychologist to talk about it." Then he handed me his wife's card and guess what? She was the psychologist he thought I should see. Big surprise, huh? I hate hearing that, though. "You're depressed and need to see someone." Well, duh, I'm depressed. I just lost 80 lbs and can't eat anything but broth. You'd be depressed too, Asshole.
Now, if someone went into the hospital with say, chest pains, do you think he'd hear, "go home and sleep it off" or "suck it up and get used to it"? If a doctor told his patient with brain cancer that she was just a drug addict, that guy would get shot! So, why is it that we have to put up with this from our doctors? It just blows my mind. I mean, you wouldn't even hear these kinds of insults if you were just plain nuts. There are no blood tests for craziness, but that doesn't mean it doesn't exist. I've yet to hear of a doctor telling his crazy patient that they need to get out of here so I can use your bed for someone who's really sick; or that they're just lazy and don't want to work, so that's why they're nuts. It doesn't make any sense and really needs to be changed.
