Poem: Tribute to the Tsunami Victims, 2005
Missing or dead
We look ahead
For the hope and the life
To end all strife
We have to start giving
Giving to the living
Compassion and peace
That all suffering may cease
For the cause of glory
For a valiant story
Cruelty and fear
We pray to disappear
The darkness covers
Friends and lovers
Compassion will seal
The human race to heal
No more war, no more pain
Nor more darkness and rain
As the sorrow dispells
Our love impells
Grace to teach
Arms to reach
Love to give
To those who live
Test of Gold
My brother cuts hair. He's a barber. But, he's so good that alot of women go to him, also, including me.
I haven't been able to leave the house for months, except for during my emergency runs to the doctors or hospital and my hair's been getting pretty shaggy. I think I've mentioned before that where I live is really out of the way. It actually reminds me of that place in O Brother Where art thou? (One of my favorite movies.), where George Clooney's character says, "Well, ain't this a geographical oddity? Two days from everywhere!" Well, we're not quite that far, but I'd say that 2 hours from everywhere is about accurate. lol
Anyway, he came up with his kids for a short visit, and more specifically to give me a haircut. It was really sweet of him. So, he's cutting my hair, right? And, suddenly, just moving my hair began a migraine. I mean, isn't that unreal? He touched a sensitive area with the razor and sent me into horrible pain. I felt like a baby, when I told him that we needed to stop the hair cut for a few minutes, while I got over the initial shock of the pain. By the end of the haircut, I was nauseaus and needing medication for the pain. I couldn't believe it! I just can't do anything!
The simple things, the little things that you take for granted are so freakin' difficult when you suffer with chronic pain. And I feel like a big baby. And worse, I feel like others look at me and think, "Why is she complaining? She doesn't look sick. She doesn't look like she's in pain. What a hypochondriac!" I have seen it when people have rolled their eyes while I'm telling them about how much pain I'm in. And by "people" I mean people in the medical field, because, these days,
they're the only people I see. I'm really fortunate right now to have a compassionate GP's office staff, but I hate it when I have to go to the hospital ER, because that's the response I get. Like I have nothing better to do with my life than hang out in the emergency room.
William Shakespeare got it right when he wrote this stanza in A Comedy of Errors, Act 2:
A wretched soul,
bruised with adversity,
We bid be quiet when we hear it cry;
But were we burdened with like weight of pain,
As much, or more, we should ourselves complain.
And you know, it's true. I think about that sometimes. I am tough as a marine chewing nails. People have no idea the kind of pain a migraneur is in. And worse is when I have a cluster headache on top of a migraine. I'll give you an idea of what a cluster is like. Imagine your typical bad headache and multiply that by about 50 and you'll have a typical migraine. Now, imagine a bad migraine and multiply that by 100 and you'll have the kind of pain you get when you have a cluster. Now, imagine that it comes on suddenly, without warning, at full blast. You don't get to work your way up to a pain level 9 or 10. As soon as you get it, you're at a 9. And you have to endure that for up to 3 hours and the pain level doesn't decrease and it doesn't let up at all. Now, imagine having to have that kind of pain on top of a migraine. That's what I get about every month or so. I was getting it alot more often last year, but for whatever reason it's gotten better or into a different cycle or something. Thank God.
"Fire is the test of gold; adversity, of men." Seneca (c. 3 B.C.–A.D.65)
The most difficult thing for a chronic pain sufferer, in my opinion, is to practice compassion toward others who don't know the meaning of pain. For instance, my daughter scraped her knee at school and probably a couple spots of blood showed up on her boo-boo. You know how it is. And, being a kid, it was a big deal to her and she had to tell me all about it. Now, because she's my daughter, it's easier to practice compassion and say comforting things to her about it. But, in
my head I'm thinking, Big deal. Mean, huh? Well, it's even harder to be compassionate to other adults who talk about their pain. I mean, I'm sorry that you have a sinus infection, but, Baby, that ain't even a drop in the bucket! I'm sorry that the remodel on your house is taking so long. I'm sorry that your ex-husband is a bastard and won't pick up the kids this weekend so that you can have a break from kids.
This is where your mettle is really tested as far as compassion is concerned. When you can listen to someone bitch about their little problems and still feel empathy for them, and are able to love enough to listen, realizing that each person searches for happiness, and, so for them, this is real pain in their lives. That's how you know you are practicing compassion. It's really hard to do.
It's much easier to be compassionate toward people like the Tsunami victims who've really, truly lost important treasures (ie loved ones, parents, siblings, homes, memories). It's much easier to be compassionate toward the Iraqi's who've suffered under torture and tyrany for five decades. It's easy to practice compassion toward these kinds of people. But, that is part of the test we go through to become more enlightened and loving.
"Life is truly known only to those who suffer, lose, endure adversity and stumble from defeat to defeat. " Ryszard Kapuscinski (b. 1932), Polish journalist.
Until you lose something, suffer physically and have to endure humiliation, I don't believe you can ever, truly attain fullness of compassion. Oh, you can have sympathy or even empathy, but compassion, being able to respond appropriately with love to what another person is sufferring is impossible unless you have suffered and lost yourself. Each one of us is searching for happiness and searching for freedom from suffering. This is why suffering and pain are so subjective.
Migraneurs suffer continually, not just the physical pain and the humiliation of being ridiculed by others, but also constant defeat. The defeat comes from having to try a drug and find it doesn't work for your pain, so then you have to try another and another. Or having to go from one incompetent doctor to another until you finally find one that understands and is willing to do some actual work to help you feel better. It is a constant uphill struggle. You are rowing against the currents.
This is why we are so tough. We don't give up. Most people would give up after a little bit of struggle. I think that the spiritual ancestor of migraneurs is Abraham Lincoln who failed more times than I can count in starting businesses and in running for political office. He should be the patron saint of Migraneurs everywhere. lol
Herman Melville is quoted as saying, "He knows himself, and all that’s in him, who knows adversity." Good or bad, we come to know ourselves when we are forced through the fires of adversity. Pray we come out like gold, tough and beautiful.
Ancestry
Ancestry
"
... having predestinated us unto the adoption of children by Jesus Christ to Himself, according to the good pleasure of His will, (6) to the praise of the glory of his grace, wherein he has made us accepted in the beloved, "
Ephesians 1. verses 5-6, King James Version, Holy Bible.
"
For ye have not received the spirit of bondage again to fear; but ye have received the Spirit of adoption, whereby we cry, Father! (16) The {Holy}Spirit itself beareth witness, {or agrees} with our spirit, that we are the children of God: (17) and if children, then heirs; heirs of God, and co-heirs with Christ..."
Romans 8. versus 15-17, King James Version.
Thich Nhat Han, a bhuddist monk and teacher, describes the spiritual ancestry of Christians this way in a talk he gave to a mixed religious audience in, I think, Switzerland, if I remember correctly. Forgive me if I'm wrong. "
Jesus is a spiritual ancestor for many people in Europe. We have blood ancestors but we have also spiritual ancestors. Jesus is one of the ... spiritual ancestors of Europeans." He goes on to say that Christians who have received the gift of salvation ,"
{have} the seed, the energy, the love, and the insight of Jesus. If you do well you will be able to help this energy to manifest within yourself." In other words, we take on the mind of Christ and his attributes shine as a beacon through the Holy Ghost.
He goes on to say, "
With prayer and contemplation, with the reading of the Bible you put yourself in a safe situation. You are able to contain, to control, to transform the negative energy in you, the energy you call evil spirit. The Holy Spirit is the energy that you need in order to embrace and take care of the negative energy in you. "
We have a home, a place for sanctuary, rest and refuge. Psalms 23, "
He makes me lie down in verdent, green pastures and he restores my soul." As part of God's family, we have a safe place to call home, a place where we can recharge our batteries and to stop and rest and not do anything for a period of time. What other reason would we need to lie down, except that we are sick or worn out?
Spiritual ancestry is a very deep concept. When we're children, we asked Mom and Dad where we came from. And they would tell us, Germany, China, Africa, Mexico or what have you. As adults, we need to ask the same thing of our spiritual self, "
Where do I come from? Who are my ancestors? What is my heritage?"
When you believe in Jesus Christ, that he came into this world to offer forgiveness of sins by the blood that he poured out and by his suffering; eternal life by his miraculous resurrection of the dead, we have the knowledge that we are co-heirs to the throne to which he bodily ascended at the right hand of God. We are offered the opportunity to partake of everything He did, the blessings, the gifts and even his sufferings. Jesus is our spiritual ancestor, along with all of those
who've walked the walk and talked the talk ahead of us in The Faith.
The roots of our spiritual ancestry are like the roots of a redwood tree. They spread out very far and many of the roots are seen on the surface of the ground, but many are buried deep beneath the earth also. Our spiritual roots are deep and ancient. Once we accept Jesus as our master, suddenly he says that we've received adoption into his family and we become the children of God, just like He is. This makes Jesus our brother. He is our role model, like an older brother
would be.
We are accepted into the household of God and we have his promise that he will be our protector, guide, a good listener, dispense wisdom, comfort and most of all, love. It is a commitment made by a father to his child.
Alot of us don't understand that concept having come from homes where our fathers abandoned us, or from a broken home, or a home where we suffered abuse or neglect at the hands of our parents. This really skews our perception of what a good parent is like. But, God offers a different course, a different home. A family with the atmosphere of love, friendship, peace and serenity, loyalty, hope, patience with you when you do dumb stuff, safety from the cruelties of the world and other human beings, presence versus abandonment, grace for times when you are beating yourself up for mistakes in the past and regrets for wasted life moments, siblings to play with, talk to, and, yes, even disagree with, and love in abundance.
He doesn't promise that there won't be storms and troubles in life. What he promises is that when we're home, you'll find peace in spite of the storms. (And you are always home, because God is ever present with you. ) We're promised relief from worries. A shoulder to cry on. An ear to bend. And a place to recouperate, relax, recover, rest.
This place isn't a hide-out. It's just a place where you can lie down to rest. This place isn't a utopia. Everyone experiences trouble. When it rains, everybody gets wet and there are no exceptions. But, this is a place that you can count on to shelter you and provide warmth and comfort during the tests of life. And he promises that he won't treat you like a "red-headed
step-chile", but rather, as an adopted child, you are a rightful heir to everything God has to offer and that Jesus has as the son of God, just as if you were naturally born into the family. You don't get to put on rose colored glasses and you can't act like everything's ok when it's not. Families are close and members know everything about you, even if you don't want them, too. So, you are required to be real. But, you can count on being
unconditionally loved.
Our spiritual heritage is inextricably linked with Jesus Christ, the Son of God. And it is that knowledge, the knowledge that we are loved and "
belong", that gives us the security to face adversity head on, fearless and unafraid, knowing that whatever the outcome, we have a family to come home to.
Identity
"
The man who renounces himself, comes to himself,"
Ralph Waldo Emerson.
I've been thinking about my identity. It used to be that I knew who I was by what I did. I was in sales and marketing and was very good at it. So, when I described myself, I would think, "I'm Jessica Polson. I'm in sales and work for xyz company. I've been the top salesperson for several months in a row contiguously, and have gotten that award continually since I began in my profession. I've brought a company that was in the red by $30K, up to $100K in a year. I'm great at publicity. I serve on this and that boards and work for alot of charities in the community." , etc.
Now, I'm Jessica Polson the migraneur, a mother and wife. I've had to redefine how I see myself. I'm no longer a powerhouse of energy and a workaholic. I'm a "stay-at-home" mom. And by that I mean, I can't leave the house! lol I have extreme photophobia to bright light, movement brings on the migraine pain even worse, and I certainly don't like to ride anywhere in a car right now.
Redefining yourself is a process. I felt so lost for awhile. I didn't know what my place was in the world. How could I be useful when I couldn't contribute financially to my household? I know that sounds like I was really materialistic and maybe I was to an extent. Basically, I just wanted my family to live comfortably and my daughter to get everything she needed in life. Plus, I like designer clothes and shoes, so I had to support my habit, my addiction. lol
But, seriously. I lost my identity. Who was I outside of work? At the time, it was horrible. I really had an identity crisis. But, now, I realize that I'd imprisoned myself in a defined box. I was such and such but nothing more or less.
When you're in a box, there are protective walls around you. But those walls also stand between you and everyone else. It's cramped. You can't move freely. You can't explore new places. There are no adventures. You only take calculated risks. And at some point, you become your box, identifying with it as if it were you inside and out. William Shakespeare hit the nail on the head when he wrote, "This above all: to thine own self be true,And it must follow, as the night the day,Thou
canst not then
be false to any man."
Now, I know that I'm so much more, and sometimes less, than the box. The box doesn't define who I am. I do. I have the freedom to explore who I really am. Who am I? It's the age old question and it takes a lifetime to answer. If I'd never become sick, I'd never have taken the risk to look for the answers. I might not even have asked the questions, or even known the right questions to ask.
It makes me think about the movie, THE MATRIX. Where your daily life is actually a false escape from reality. Your identity is keyed into something that isn't truly real. But, if you have the opportunity to wake up and smell the coffee, you discover a whole new side to yourself. And you finally come into full realization and awareness of the truth that is in you. It's almost as if you're reborn.
When you have to redefine your identity it's like being born and opening your eyes for the first time. You truly see yourself. All of your flaws are on display. All of the things that make you fallable, human and mortal. And, all of your good qualities are also brought into the light. Those things that make you a unique individual.
Loneliness
One of the most difficult things for chronic pain sufferers to deal with is the loneliness that comes along with it. When I first started getting the migraines my friends were pretty sympathetic. But, as I got progressively worse and could not go on lunch dates and lost my job, my friends and I just started drifting apart until suddenly I had no friends. I couldn't go out to the parties, the end of the week chat fest at the restaurant or bar. I couldn't go to lunch or birthday parties. And then, I couldn't afford to buy gifts or go on shopping sprees, either. And my friends were too busy working and caring for their families or their own problems to come visit. So, now, I'm friendless.
I'm married to a wonderful guy and have family, but it's not the same as having friends. I mean, who do you complain about or brag about your husband to? lol Who do you complain or brag about your mom-in-law to? lol Who do you give advice and listen empathetically to? Who do you have to rely on? There's no one to share the burden with, so you end up relying completely on your spouse or loved ones and wear them out.
You feel uneeded and no longer useful to the world. You're not contributing and can't have the love you're used to. So, the loneliness envelopes you, engulfs you. I think it's a major contributing factor to why a large percentage of migraneurs kill themselves. Loneliness is one of the worst feelings in the world. It makes you feel forgotten and invisible. I think this is the main reason chronic pain sufferers get depressed.
I've recently begun replacing that void with cyber pals. It's a little surreal, because you never actually meet them, but it helps dispel the loneliness.
Resources
Thought I'd post some websites with up to date information on migraines and migraine treatment.
http://www.migrainepage.com/ (excellent for a support group, couldn't live without them)
http://www.midas-migraine.net/
http://www.migraine.org.uk/
http://www.mayoclinic.com/invoke.cfm?id=DS00120
http://headaches.about.com/
http://www.headaches.org/consumer/topicsheets/migraine.html
And a couple of blogs that I really like from my cyber buddies:
http://www.mooglesthoughts.blogspot.com/ (these just give an idea of how different migraneurs cope with their disabilities and the ways that they do it.
http://www.mymigraineagony.blogspot.com/
And one on just general neurology (thanks to Marc, you know who you are :})
http://www.neurologyreviews.com/main.html
As always, I hope these help someone, anyone. :) Snogs.
Presence
My head's killing me again today. You know what's hard? To be affectionate with your loved ones when you're in pain and you just don't feel like touching or being touched. The ultimate sacrifice. LOL
But, that leads me to think about Presence. What does it mean to be present? I mean 100% present. There is a security that it gives you when your partner is just with you. And, as in everything, there are two sides to this coin.
When someone is sick or dying, it's hard to watch when you love that person so much. When I was a nurse's aide, just starting out in that career, I couldn't understand how people could put their loved ones in a nursing home and just abandon them. As I worked with these "forgotten" people, I began to understand the feelings of their loved ones, sort of. It's just really hard to watch someone whom you've known all of your life to be your caretaker, protector, lover, whatever, getting sicker and sicker, forgetting who you are and the memories you've made together, etc.
But, it is soo important to be "there", to be present with that person. Just your presence, whether they're seemingly aware of their surroundings or not, is paramount. Just to be there and say, "Darling, I'm here and I love you." In Bhuddism, there's actually a chant for this that you should repeat over a sick or dying person. In Christianity, you're encouraged to pray for the sick and they will be healed. I am learning that the healing often is what takes place in the heart and mind when someone knows that you love them enough to take the time to tell God how much you love them and want them to be whole. And when you think about it, what is greater than the power of love?
On the other side of the coin is your being present, 100%, for your loved ones. When you're the one who's sick, this is extremely difficult. It's hard to think of anything other than the pain, when you're in that condition. All you can think about is how to get rid of the pain by any means. But, your reality is that you have a husband and kids (or other loved ones) that you are inextricably knit with and they need love just as much as you do. They need love and compassion and the knowledge that you understand what they're going through, watching you in your illness. The overwhelming helplessness, the not knowing how to support you or how to make you as comfortable and comforted as possible. That's when you have to say, "Darling, I know you're here and I love you."
It's acknowledging that just their very presence is important in your life, whether or not that person is functioning at top speed. And it's acknowledging that no matter what your loved one, ie your spouse, is doing to try to make your life better, even if it's a clumsy or ineffective attempt, is appreciated, but that it's even more important to you that they're just present.
One's presence is taken for granted so often. Personally, I don't have the depth of understanding that I should have in knowing that just the fact that I'm present is enough for now. Even though I'm curled up in a ball of pain, wanting to just be still in the darkness, I'm still here and my daughter knows that I'm
here. I don't realize how important it is to just be present or what it means to know that my husband and daughter are present with me. Presence is one of the most powerful forces in the universe. It's the deposit of one person's will, concentration and focus, love and their strength. It's the foundation of self-esteem, edification of another's esteem, and gives an unending well to draw from or give to. It's symbiotic. It's powerful and empowering.
Presence is comforting, a knowledge that you're not alone. You may be alone in understanding the kind of pain you're in, but you're not alone or left alone to deal with it all yourself. It would be too overwhelming and enough to bring on hopelessness and despair if we thought that we were alone and without support. Presence dispells despair and hopelessness and replaces those feelings with love and the will to carry on.
Samatha: Stopping
It's funny how when you're asking questions, the answers just happen to fall into your lap. There's some kind of "thing" (for lack of a more descriptive word), that happens to bring the answers to you. I apologize in advance for the length of this article, but I hope that it helps someone else and brings peace.
I just happened to remember one of my favorite Bhuddist Monk that teaches on peacefulness and meditation all the time. He's written some wonderful books and his name is Thich Nhat Hanh. He's vietnamese, but lives in France.
I know I talk about Bhuddism and it's teachings quite alot, which may seem to be contrary to my actual religion, Christianity. I'm a born again, spirit filled Christian who believes in a mono-deity, God, and the trinity, God the Father; God the Son (Jesus); and God the Holy Spirit. However, I feel that there is alot that we, as westerners, can learn from the Bhuddists and vice versa. I have also found that alot of times, the Bhuddist teachings can explain our own Biblical verses in some instances. Having explained my own position, I have to talk about a teaching I just read by Thich Nhat Hanh, that really answers a question I asked when I first started this blog, "How do I embrace the pain of migraine"?
This has to do with rest and healing. There is a word in I believe, Pali (from India I assume) that means stopping, Samatha. "There is a tendency," he explains "for us to think that our happiness should be searched for in the future. Even our health should be searched for by
doing something. But we don't know that
not doing anything may be the key to restoring our health."
For a word picture, he goes on to explain by using nature as an example. The Bible has a doctrine that we first learn from the physical and then the spiritual, line upon line, and that is how our spiritual understanding is expanded. For instance, in Proverbs, King Solomon admonishes not to be slothful but to go watch the ants and take after them in our work. This is the same idea here.
When an animal in the wild gets hurt he runs into a safe, secure, comfortable place and lays down to rest. He doesn't think about hunting, running or fighting. He just stops everything, often not eating, but only drinking. He stops everything completely and just lets his body rest and recover. He embraces the pain in that he does not reject it, search for remedies, fight through it, etc. He just relaxes and allows his body to heal.
Through the same principal, much of the torment of our minds, the suffering of our own bodies can be relieved by just stopping to heal. Stopping what? Stopping the rush of daily life. When I'm in pain I have to stop everything. Everything else in my life is put on hold.
However, where I lack in understanding is stopping the constant searchings of my mind to find the reason for my suffering. To find a way out of it or around it. To find a way to control my situation when it is really out of my control. To find a the reasons what I did to be going through this and the guilt of knowing how I injured myself and the consequences of it. To stop from feeling guilty and remorseful for everything: the accident, the feeling that I'm neglecting my family, the impoverishment that I am causing by all the medical bills and having to quit a lucrative position.
Another interesting concept that he brings up is that without garbage (compost) we cannot have flowers. And of course the reverse also happens that flowers do turn to garbage after a little while and the cycle continues.
Does that mean that the pain which in my circumstance is my garbage will ever go away? Perhaps but perhaps not. It's what I do with my garbage. Do I turn it into compost and care and water it to bring forth flowers? Or do I just try to clean it up all the time and worry about it's ugliness.
And what kind of flowers spring up from my garbage? Well, as I have discovered there are flowers of compassion, forgiveness, finding joy in the little things that life offers me, appreciation for what I have, love, getting my priorities right and much more.
Therefore,
Embracing is much more than
Accepting your situation. It is realizing that out of difficulties, affliction and adversity a work is done in the soul that is much more meaningful since the spirit and soul are eternal. They never die, never end.
Would I contemplate these questions if it weren't for my affliction? Maybe, but I wouldn't have the time to truly explore and think about my soul's condition.
I have a time to
STOP. To stop worrying about the future. To stop chasing after things that I once thought would bring happiness and reward to my family and myself. A time to stop concerning myself with problems, mine and others. A time to stop and to heal.
It doesn't mean that I won't continue seeking treatment that can bring more rest and a break from the pain. That is not the point. The point is that I should not be consumed with the fear, heartbreak, frustration and hurt of searching for the reasons for it and the treatments. It releases me from those feelings. In this way, I can have peace as I move forward, like the water in a river, open to the hopefulness that a treatment will work, but not pained when it doesn't. I will just try again. I don't give up. I just give up allowing the pain to rule me and my emotions.
No Sleep
Well, it's weird. I couldn't sleep last night, because my butt hurts so bad that it's hard to get comfortable. ROTFL (It's all you can do in these situations.)
Anyway, that's not what's weird. Alot of my fellow migraneurs say that their migs get worse right before and during their periods. I just got mine today and the weird thing is that I actually had a pretty mild week as migs go this past week. The pain level stayed at a 5 or less all week, which is pretty unusual for me.
So, I guess I can pretty much rule out the possibility of this being hormonal. But, I already knew that. I've only had this severe of mig since I was in that accident. It's really hard sometimes, especially when the pain gets really bad, not to beat myself up over that. The accident was my fault and I'm fortunate that no one got hurt. I think my daughter had a sprained neck or just bruised or something, but after taking her to the chiropractor for a few months, she got better. But, I've gotten worse.
I have problems with Ishouldahs now. I shoulda gone to the hospital. I shoulda paid better attention on the road. I shoulda pulled over to talk on the cell. I shoulda never gotten out of bed that day. It can go on if I don't stop myself and sometimes it's hard not to stop myself.
I know alot of women do that to themselves. Why do we feel the need to beat ourselves up and inflict self-punishment? Don't and didn't we get that enough from our parents, bosses, etc? Probably that's where we first learned it and the cycle continues.
But, do we have a right to judge ourselves. The bible says, (Mathew 7) "Judge not, that ye be not judged. For with what judgment ye judge, ye shall be judged: and with what measure ye mete, it shall be measured to you again.
Mk. 4.24 "
I wonder if that applies to judging yourself, too? The scriptures following talk about being a hypocrite and critical of others. But, these two scriptures are the ones that begin the passage.
How do I keep from beating myself up inside for the pain I've caused to my family, because of this one stupid and avoidable mistake? How can I ever make it up to them? Will I ever have the opportunity? How do I live with the guilt and the regret of this foolish act? For that matter, how do we live with the regrets of all the foolish things we've done in our youth and immaturity? Knowing that I'm forgiven by God doesn't seem to be enough for me. Why is that?
I know I'm asking alot of questions and not giving much helpful information or anything very interesting to anyone but me, today. But, this is what's in my mind and what I need to work out in my life. It helps to write it out and try to find some clarity or sanity in spite of it all.
Nausea
Well, my internet connection was down all week... something to do with our server, I guess. Anyway, so I haven't been able to write and get my therapy, so that's why I'm posting twice today. Please, bear with me.
I had the worst nausea this week. It's almost as bad as having the migraine itself. I think there should be a Nausea scale with 1 being "no biggie" to 10 being "give me drugs!" I was really wishing that I had some Zofran today. The nausea was horrible.
I don't throw up, either, and, believe it or not, I wish I could. I think I'd feel better if I could throw up. I get dry heaves sometimes, but that's rare too. It's because I'm on meds for reflux and IBS that push everything down and don't let anything come up.
I know it's bad when I come out on a Saturday morning and my hubby's made coffeee cake, which I love, and I can't eat it and the smell makes me want to wretch. I'm tired of living on saltines and club soda.
You know what else is irritating? I eat hardly anything and I don't lose weight because of my thyroid and the fact that I can't excercise. Movement just totally sets off me head.
But, anyway, I've felt like I was on a yacht in choppy water. Just too nauseaus to eat, concentrate or even get off the darn couch! Grrr!
My BUTT Hurts!
A couple weeks ago when I had to get shots at the docs office, the injection must have bruised a nerve in my rear. I swear, my butt hurts so bad!
I told my husband that if I ever had to go to the hospital again, they were going to suspect me of being a very weird drug addict, because I'm probably getting tracks on my butt from all the shots I've been needing lately.
Oy vey!
Mayo Clinic Comparative Pain Scale
Thought I'd post the pain scale, in case anyone who reads this, wants to know what I mean when I say "level 5 mig" or "I'm at a level 8", etc.
0= No pain. Feeling perfectly normal. (I never have this. Wonder what it's like? Must be nice)
1(
very mild)= Very light barely noticable pain, like a mosquito bite or a poison ivy itch. Most of the time you never think about the pain. ( I don't get this one either. I pretty much skip steps 1-3 usually)
2(
discomforting)= Minor pain, like lightly pinching the fold of skin between the thumb and first finger with the other hand, using the fingernailes. (Note that people react differently to this self-test)
3(
tolerable)=Very noticable pain, like an accidental cut, a blow to the nose causing a bloody nose, or a doctor giving you a shot. The pain isn't so strong that you can't get used to it. Eventually, most of the time you don't notice the pain. You've
adapted to it.
4(
distressing)= Strong, deep pain, like an average toothache, the inital pain from a bee sting, or minor trauma like stubbing your toe real hard. So strong that you notice the pain all the time and
can't completely adapt. This level of pain can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails and squeezing really hard. Not how the similated pain is initially piercing but becomes dull after that.
5(
very distressing)= Strong, deep, piercing pain, such as a sprained ankle when you stand on it wrong, or mild back pain. Not only do you notice the pain all the time, you are now so preoccupied with managing it that your normal lifestyle is curtailed. Temporary personality disorders (crabbiness or irritability {I added this}) are frequent.
6(
intense)= Strong, deep, peircing pain, so strong that it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social relationships. Comparable to a bad
non-migraine headache combined with several bee stings or a bad back pain. (according to my migraine diary, this is my average pain level on any given day) [This is the level that my doctor would like me to come to her office for narc shots or to ER at]
7(
very intense)= Same as 6 except that the pain completely dominates your senses causing you to think unclearly about half the time. at this point you're effectively disabled and frequently can't live alone. Comparable to an
average migraine headache.
8(
utterly horrible)= Pain so intense that you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a real bad migraine. [This is the level that I tend to contemplate going through the humiliation of er. Read my post"Frustrated with the Medical Field", to understand what I mean by this]
9(
excruciating unbearable)= Pain so intense that you can't tolerate it and demand pain killers or surgery, no matter what the side effects or risk. If this doesn't work, suicide is frequent since there is no more joy in life whatsoever. Comparable to throat cancer. [This is when I head for help at doc or er. I'm stubborn, ain't I?]
10(
unimaginable unspeakable)= Pain so intense that you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident, such as a crushed hand, and lost consciousness as a result of the pain rather than the blood loss, have experienced level 10. (I've experienced this level 5 times since the mig started)
Right now I'm at a level 5, and can only think about taking some meds to calm it down.
2nd Stage of Grief
Denial (this isn't happening to me!)
Anger (why is this happening to me?)
Bargaining (I promise I'll be a better person if...)
Depression (I don't care anymore)
Acceptance (I'm ready for whatever comes)
These are the five stages of grief.
I went through stage 1 last year. I think I'm in stage 2 right now. I just found out that this is a normal process. I didn't know that, but I guess it makes sense. You have to put one foot in front of the other to get somewhere. I believe that it would be unhealthy to skip a step. Like baking. You can't put in the flour and the salt and skip putting in the water. You get stuck where you're at when you do that--with a bowl full of fluffy stuff, nothing to hold it together and then it all falls apart.
When you clean a wound you go through steps: cleanse, rinse, dry, salve, bandage. If you skip the first step, then your wound doesn't heal, but instead gets worse. If you skip the third step, the bandage won't stay on. If you skip the last step, then the wound is open to infection and unprotected from bruising.
I am thinking that this is how it is with grief. If I skip a step and go straight from step one to step five then I will miss the healing in between and will surely fall apart. Here is another lesson in patience for me. It's so difficult to be patient, isn't it? It is for me. I fall very short in this area. Because what I want to do now is go right into accepting where I'm at.
I do think that throughout the grieving process, you probably have all five working in you at the same time, just one is more pronounced than the others. It's not necessarily
only chronological. But, I could be wrong about that. I guess I'll know when I've gone through the whole process.
You lose so much when you're ill all the time. I'm young-ish and since I can't go out and do things with my friends or just have them dropping in any old time they want to, like I used to enjoy, I've lost every single friend. I have family, but I don't have friends. None of them could understand why I had to continually cancel our play dates. They're all too busy to spend any time to visit. Always in a rush. I understand that. That used to be me, sort of. Of course, I was the kind of friend that if I heard that one of my friend's were in the hospital, I was out the door and on my way to see them. Sometimes, they had to tell me
not to come, because it wasn't serious. So, I guess I have been angry that none of them were the same toward me. Not even a phone call. Just dropped, like that.
But, I'm not angry over that anymore. I am understanding about it and actually, now I know it's a good thing that I don't have any obligations to be with them. I'll make new friends when I'm feeling better.
I lost my job, my money, my insurance. But, I still have my husband and daughter, and of course our extended family. I had to move into a trailer in the boonies (I'm most definately a city pent house kind of girl, lol), so that I could be near our family and get the help I need and not have to rely solely on my husband anymore. I have seen that it's cut down on his stress a great deal, so I am ok about this move, sort of.
Anyway, I guess it's good to get angry and just get it all out. Like I've said before, it's why I started this blog. My own personal bitch session. So, I'm airing it all out. Get it out of my system, so that I can let it go. So, I'm going to start being more forgiving of myself when I'm angry. I won't try to stop it, stuff it, or ignore this emotion when it comes up. Wonder what
Bargaining will be like?
Non-violent Non-cooperation
Non-violent non-cooperation. An ideal first practiced by Ghandi, then the Dalai Lama, then Martin Luther King, jr. I've decided that this would be one of my approaches to my migraine. How? Well, I'm not going to just lay down and live with it. I'm going to continue seeking out help and relief, but at the same time, I'm not going to let them affect my emotions anymore in the way that they have been. I'm not going to cooperate with them and allow them to get me down to the point that I'm feeling sorry for myself. This is going to be my ideal. Now, I want to talk about non-violent non-cooperation in politics.
From what I've read in history, it seems to have only been truly effective when you can do it from within your country. Ghandi first began using this technique in South Africa, where he lived for quite awhile when he was a young lawyer. Then, when he returned to India, he used it again. It was finally effectual. It worked.
MLK, jr. used that technique in the United States. He lived here and worked from within the country to effect change. It worked and continues to work as we evolve as a country.
The difference I think between what those two men did and what the Dalai Lama is trying to accomplish is that the Dalai Lama and the Tibetan refugees have to try to accomplish the reclamation of their country from without. They are using the same technique. Nonviolence takes a very long time. Much longer than a violent war. But, the effects last for much longer, too. However, I think that fighting from without the country is even more difficult. It's been 60 years and the united nations still does not recognise Tibet as a sovereign nation unto itself. Rather they consider Tibet as part of China. The US is only recently beginning to recognise Tibet's sovereignty and that's only because of some volatile Hollywood activists like Richard Gere.
When Tibet first requested our aid, in the early 1940's, we didn't help. Firstly, we had our own wars that we were fighting. But, mainly because there's nothing in Tibet that we want. They don't have oil, or trade with our country of other materials. They're a very small country far away. So, big brother said to little brother, "tough luck, little brother. I guess the bully that's beating you up will continue to beat you up unless you run away." And that's just what's happened.
We still don't know the half of the terror that is still inflicted on the Tibetans by the Chinese Communist Party. It's not reported. It's not news, because there's nothing that we want or need from the Tibetans. But, the fact is that the Chinese continue to torture and kill the monks and nuns. They make children kill their parents by putting a gun in their hands and holding them there while they pull the trigger. Tibetans continue to try to escape to crowded India. How can nonviolent noncooperation work when there may not be enough Tibetans inside the country to protest? They starve because China demands 3/4 of their crops. They can't complain about the Chinese invasion and their government. They are executed for worshipping the way they always have.
Why do we go to fight for Bosnia and Iraq, but not the terrorists who have infiltrated Tibet for the past 60 years? Why don't we care about them?
Quiet After The Storm
I'm over my temper tantrum. I flare up so quickly over medical stuff. It's so hard to be at the mercy of people you don't know. It's hard to not be in control over what happens to your own body. I'm not a trusting person anyway. A bit of a cynic in fact.
But, I need to learn patience. I need to learn to be merciful toward those that slight me, so that I can receive mercy in return. I need to learn to be patient.
Patient, patient, patient. It seems to be my life's story these days. Patient waiting for the pharmacy to get a TAR from the Government, so that I can get
some of my medications. Patient waiting for the doctors to give me an appointment. Patient waiting for the meds to work. Patient, waiting, patient, waiting, patient, waiting.
I have never been a very patient person. I know that now. When I wanted something, I went for it and got it. I wanted my husband, so I got him. I wanted nice furniture, so I got it. I wanted a beautiful apartment, so I got it. I wanted a good salary, so I got it. I wanted and I got it.
Now, I want and I have to wait. Now, I need and I have to wait. Now, I hurt and I have to wait. And they're simple things, too. But, I have to wait so long to get them.
I have come to realize that life really boils down to simple things. It's not about accumulation. It's not about image. It's not even about happiness. It's about love. It's about family. It's about having the basic necessities: food, water, shelter, clothing. And now, it's only about surviving day by day.
Survival of the fittest? I say it takes a greater brand of toughness to survive when you're unfit and in pain.
An aide to the Dalai Lama was almost killed once. When the Dalai Lama asked him if he was alright, he replied, "I am too old and too tough to kill, Holiness."
That's how I feel, too. I'm chronologically young, but experientially old and too tough to kill.
Getting Out of the Funk
Well, I found something that made me laugh, so I guess I'm sticking around awhile longer. Besides, I was thinking about it, and it's just too much trouble to off myself. And no one, but no one, can manage my daughter's thick, curly (wooly, really), hair except me. So, if I want the girl to look good, I gots ta stick it out. Ok, so here's what made me laugh:
A Modern-Day Princess
"
Once upon a time in a land far away a beautiful, independent self-assured princess happened upon a frog as she sat contemplating ecological issues on the shores of an unpolluted pond in a verdant meadow near her castle.
The frog hopped into the princess's lap and said, "Elegant lady, I was once a handsome prince until an evil witch cast a spell upon me. One kiss from you, however, and I will turn back into the dapper young prince that I am; and then, my sweet, we can marry and set up housekeeping in yon castle with my mother, where you can prepare my meals, clean my clothes, bear my children, and forever feel grateful and happy doing so."
That night, as the princess dined sumptuously on a repast of lightly sauteed frogs' legs seasoned in a white wine & onion cream sauce, she chuckled and said softly to herself,
"
I don't f------ think so!"
Wish I knew who wrote the joke, but I don't. I applaud the person that did though. LMAO!! Now, who can kill themselves after reading that? lol I'm really cracking up. I love it!
Bad, Bad News Today
Well, after all these months of waiting and waiting for an appointment with Dr. Raskin at UCSF, I've been brushed off. Well, sort of. Dr. Raskin won't be seeing me. I was referred to general neurology. And of course they can't make an appointment for me right now. They said
maybe within the next two weeks they will be able to make an appointment for me. Of course, making an appointment and having an appt. are two different things, so it could mean that I wouldn't even get seen for another couple of months. I just can't believe this is happening!
I can't wait that long. I'll end up killing myself from the pain before then. I just can't stand this pain anymore. I'm trying really hard to be strong, but...
I can't talk about this anymore. I'm starting to cry. I'm so disappointed.
Finally A Good Day
My head feels so good today. The drugs from the other day are still working. It usually lasts about 3 days when I'm lucky. But, not having any pain for a day gives me time to relax and enjoy life a little bit. I feel so normal when my head doesn't hurt. Just like I felt, before I started getting them. Before the accident and everything changed. It's times like these that make me hope that things will change. I'm an eternal optimist and tend to hope that things will turn out well. That somehow, this time a miracle will occur and I'll never be in pain again.
But, I'm beginning to be more tentative in this hopefulness. There's a jaded side to me that says, you know it's only going to last for a few days and then it'll be back to the same ol' same ol'. But, I'm not going to listen to that voice today. I'm going to live in fantasy land for a day and enjoy the freedom of not being in any pain. Couldn't hurt to be wishful for just a day, could it?
The Enemy Within
Needed to post twice today because of two different themes.
His Holiness, the Dalai Lama has been quoted as saying that you should embrace your enemy because then his arms can't kill you. Another tenet of bhuddism teaches that you should love your enemy because he is your teacher. The Bible says that too...to love your enemies.
For so long I couldn't understand the "love your enemies" idea. How do you love someone who hates you and is evil toward you? But, when I read it and it was explained to me by bhuddist philosophy, I finally understood it. I haven't been able to DO it. I understand it in my head, but understanding and doing are totally different things.
Lately, I've been thinking about that saying alot. I've thought of it pertaining to doctors who give me the third degree when I need help, yes. But, really I've been thinking about it in the case of the enemy that is within me, migraine.
Is it possible to learn from the pain? Is it possible that pain can teach me more about myself? Can it teach me about what I hate about myself and what I can change? Would it work the same way that it will if I were to do it to other people?
I know that the pain has changed me. I used to live in a very fast lane. Now, I actually have time to ponder philosophies like this. lol Oy!
It has made me more compassionate. There is a compassion that can only come if you've lived through the situation yourself. A sensitivity toward others. A sort of mercifulness that you have when others wrong you or make you wait. It's given me the grace to let go of slights, of the pain that others cause, more quickly than I used to. I don't hold on to grudges.
That's not to say that I don't get pissed off. I most definately do. But, I can let go of it. I know that the time on this earth, in this life is short. Too short to spend on assholes and uncompassionate people. And I don't have the energy for holding grudges. It takes too much energy and brain power to be bitter.
I have a long way to go until I can embrace or love this enemy. I don't think I'll ever be able to. I fall short in this area. But, what would happen if I could embrace, or at least accept, my situation. I believe that this is the path to peace. Knowing that living in reality is accepting where you're at right now.
Feeling Pretty Good
I feel pretty good today. Haven't had a mig all day long. It's great. I feel totally dopey, kinda stoned, I guess, but I don't care as long as I'm not in pain. In a way, I wish I could get those shots every day, because I'm always, always in pain. But, truthfully I hate getting them because I'm very type A personality and like to be in control of myself all the time.
I'm really driven and I wish I could work and put that drive to work for me. But, because I'm down every day with these migs, I can't work. I can't even do housework most of the time. And when my mig is high on the pain scale I can't even concentrate, so I wouldn't be any good to anybody anyway. C'est la vie!
I'm just thankful to feel good today. I figured out that it was the maxalt that was keeping me from responding to the narc tx's, so that was one mystery solved and I'm really glad about that. It wasn't helping me all that much, if any, anyway, so it's no biggie to give it up.
My husband called yesterday to find out if they were done "reviewing" my case at UCSF so that I can go see Dr. Raskin. It's really frustrating to find out that they aren't finished with the review yet. I've been waiting for this for two months now. It's just so frustrating when I know that I just need some trigger shots in order to feel more normal. But, I'm still hoping that he'll have some more answers, too.
Poem: Falling Into Purple
I had to go to the doc's for a narc tx (treatment) today. I've had a mig pain level 7-8 for three days and was exhausted because it wouldn't let me get any sleep. Awhile ago I wrote this poem to describe how I feel when I get those tx's. It was hard to find the words to describe it. Here's my poem about getting the narcs I need when my pain is at a level 9 or 10 and I finally wise up and git mah butt into the ER. lol It's about how I feel while I'm on those meds, so it's a little bizarre. Kinda like Alice going down the rabbit hole. LMAO
Falling Into Purple
Waiting for the trip,
The rift to drift
Currents flowing through my mind
Dragging away the darkness
Surrounding me with yellow light
Lift me up sweet nectar
Sail me to the great beyond
Wisk me away, I don’t want to stay
Bring me to that peaceful place...
With purple haze
Where the flowers graze
And love abounds
And sounds
Are comforting and sweet
Peace, peace
Give me a piece of
hope and liberty
While my mind spins and bends spoons
My mind is bending spoons or
Are the spoons bending my mind?
I don’t care, I’m finally there
Into the fog, the haze, the light.
Poem: Bound
I want to squeeze until it pops
Until it drops
Until it's severed and will fall
What's it all about?
I just wanna shout
To scream, to cry, to bawl
Chills go up my spine
I stifle a whine
A wimper, a groan...I call
Out for drugs, for surgery
Anything...I want mercy
None comes and my hope falls
To pieces on the ground
At my feet
I am bound...
My First 5 Minutes
I saw this doctor, and he was like the third doctor I'd seen, (the first was my gp and didn't know what to do, apparently; the second wanted me to see a shrink), when I was having problems with my gall bladder and IBS. Oh, man, you gotta hear this story. This is unbelievable. Ok, so I'm seeing this doctor and he runs some x-rays of my belly and does complete colonoscopy and endoscopy exams.
So, I go into his office when all the tests are done, hoping that he'll have an answer for me. So, I'm sitting across the desk from him, right? And I'm looking at his windowsill and he's got like all of these sort of McDonald's type toys behind him. Gosh, what were they? I'm trying to remember, but all I can remember is that each of them was totally bizzarre. So, anyway, he looks at me and says, "Sometimes people experience pain when there's nothing wrong."
I looked at him, as any sane person would, incredulously and said, "But, isn't pain a WARNING sign that something IS wrong?" And he said to me, "No, that is a myth. It does not mean that. And you are not really experiencing pain. It's in your head. So, you just have to ignore it."
OMGsh! Can you fucking believe that he said that? A
DOCTOR told me that it was a myth that pain is a warning sign. I was so pissed off when I left that I was crying and shaking. I hadn't been able to hold down food for 4 months, had lost about 50 lbs (which was the silver lining on the cloud, if ya know what I mean), was in such bad pain that I walked like an old woman with a hump and it would knock me to my knees when it got really bad.
UnFuckingBelievable!!!! I reported that asshole to the medical examiner's board. Needless to say, that bill didn't get paid.
5 months and 7 doctors later I was being wheeled in for emergency surgery on my gallbladder because I finally found a doctor who listened to me. I kept telling them, I think it's my gallbladder that's giving me problems. They ran every test EXCEPT the one that they should have run in the first place. Can you believe that shit? lol Ya gotta laugh or you'd cry. There's a very simple test that you run, FIRST to find out if you have gallbladder problems. But, these doctors thought they knew better or something. They didn't listen or something. I don't know. I told them every symptom and each one was a very classic gallbladder symptom.
By the time I had the surgery, I'd lost 120 lbs. and had gotten to the point where I wasn't even holding down water. Couldn't eat. Couldn't drink. So, yeah, I tend to be a bit distrustful of doctors after that incident. I damn near died, because they didn't listen and they didn't do their jobs. So, as far as I'm concerned only one in ten doctors is any good. I shouldn't have had to go through that. And doctors lie all the time. I'd rather hear a doctor say to me, "Gosh, I'm stumped and I just don't know what to do. Let me do some research and call some of my doctor friends and get back to you at our next appointment." Have you
ever heard a doctor say that? What's the big deal about that? Doctors are very prideful and in the Bhuddist philosophy, all sin comes from Pride. And that's true. I have seen it over and over again.
So, now when I go into a doctors office, I tell the receptionist to hold my check and keep it on the desk, because if I'm outta there in 10 minutes, I'm takin' my money with me. Then, I go in to see the doctor and I tell him these are my conditions, if you don't like it let me know and I'll leave:
1. Don't bullshit me and don't lie to me. Be honest and tell it like it is. I'm a big girl and I can deal.
2. Don't ever let me hear the words, "It's all in your head"
3. I better never read the words "hysterical" or "hysteria" written in my charts
4. Don't put me on a bunch of drugs for my symptoms without knowing what the root cause of my disease is. (I've had that happen to me before, too, and it is definately NOT cool)
5. If you're running tests, referring me to someone else, or prescribing a treatment then I want to know everything about it and why you think I need it. I especially want to know the risks involved in taking the meds.
6. Do your homework. If you don't know what's going on, then I expect you to do your job and research it until you find the answer. If you can't do that then tell me right now and I'll take my business elsewhere.
7. Listen to me. Read my lips. Don't interrupt me while I'm talking, because that means that you are not listening.
8. Don't do other stuff while I'm talking to you, because that means that your head is not in the present and you're not focusing. If you're listening to my heart, taking my bp, writing in your notebook then you are not paying attention to what I'm saying. You can't serve two masters at the same time, no one can. And multi-tasking is bullshit. It's just another way of saying, I'm bored with you or too busy for you.
9. If you expect me to be at your office on time, then I expect the same thing. Now, I know that emergencies come up and I'm willing to be patient, but you have to understand that emergencies come up with me to. And I'm not paying any damn fee if I have to cancel my appt at the last minute because I'm having a tough day and I'm puking my guts up or can't get off the couch cuz my head's splitting or my kid calls me from school because she's in the principal's office. Otherwise, we both play that game and I can guarantee that my time is worth alot more than yours. If I have to wait longer than 20 minutes, you will pay me $3 per minute to wait for you. If I wait for you for an hour, then my fee is $200, because that's what my time's worth. (You know how they charge you anywhere from $25-75 if you"miss" your appointment? Or how, if you're 5 minutes late, they'll just reschedule you as soon as you get there. What a bunch of bullshit. Well, if they cancel on me without 24 hours notice, my fee is $200.)
10. If you can't or won't comply with these guidelines then tell me now so that I can find another doctor. I have alot of medical problems and don't want to waste my time with someone who doesn't give a damn about me.
Then they tell me if they can hack it or not. If the answer's no, then I take my money and leave. If the answer is yes, then I soften up and we have a real nice relationship after that. But, for the first 5 minutes in their office, I am a complete bitch. It's for two reasons. It's because I do want them to do those ten things that I listed. But, it's also because I want to see how they react under pressure; if they are humble enough to acknowledge that I'm the one paying their salary and I'm the customer; and if they're willing to work their ass off to help me get better. I don't like to waste my time on charlatan's, crooks, assholes and pill dispensers. Do you?
Poem: Tears On My Pillow
TEARS ON MY PILLOW
by Jessica Polson
White lights bleeding
from my eyes, down through my heart
crying in the night
awake with pain and penitence
I say my prayers
There are no ears, no one hears
My screams...inside of me
Inside of my head
On top of my bed
And the blood drips from my eyes
Tears on my pillow
The Danger of Wishful Thinking
I guess, really, I created this blog for a bitch session. Today, my mig was a 5 when I woke up and now it's an 8. I took a phenergan for nausea, a fioricet and a maxalt for the headache. The weather's lousy. Wonder sometimes if that has something to do with it? But, my husband, Stuart, says that it doesn't since I have the migs whether or not the weather is good.
I want to talk about wishful thinking. Wishful thinking is allowing yourself to live in a dillusion. I do it and have to catch myself. Living in the present doesn't leave room or allow for wishful thinking. I mean, it's not based on reality. The Dali Lama would probably advise against it, since the most peaceful path in life is to face reality. Living in the moment is important. Not worrying about the future. Not regretting the past.
But, it doesn't mean that you give up hope witch is entirely different from wishfullness. I mean, wishing is being in the present and wanting to be somewhere else, something else, someone else. But, hope is like having faith. It's not based on anything that's happening now, but an interior knowledge that things will change for the better. It's like an everflowing stream inside your consciousness, your mind, your soul that the darkness, at some point will turn to light. Having hope or faith will keep you alive. Wishing is futility, nonsense, and only leads to frustration, anger and despair when you realize, in moments of lucidity, that nothing is how you want it to be.
So, I try not to wish the present different, but to have hope that one day my present will be better than it is now. I have faith which gives me the sure knowledge that I can face the future with courage and strength no matter what the outcome. And no matter what my outcome, because I have hope and faith, I will be at peace in the present-not thinking of the future constantly and not regretting the past. This way, I am and have my being in today.
A New Day
Woke up with a level 4 mig this morning and nausea that was, well, nauseating. I tell you, morning sickness has got nuttin' on the kind of nausea that comes with the migraines. It's horrible. Just these waves of sickness crashing up against you and rolling over you, well me. Guess I'm dissassociating a little.
I don't like to talk to Stu, my husband, about my symptoms anymore. It depresses him too much. He's been a rock for me these past couple years. I don't know how I found such a good man.
I just ate something yummy, and I feel sick to my tummy. I've taken phenergan already this morning. 25 mgs. I've asked my doc for Zofran. It's heavy duty for nausea. It's what they give chemotherapy patients. I had a shot last time I was in hospital (ER, Monday) and it was wonderful. Took care of it in less than 10 minutes.
I am trying to stay away from the fioricet today, because I took it yesterday, and it's making me have rebounds because I was taking it too often. It's hard, because I'm out of my Imitrex and I'm on medical, so that means that every time I need a new prescription they have to do something called a TAR and it can take up to 2 weeks or more to go through, sometimes. And then I only get enough for 2 shots. It's not enough to help me for a month. And then I go through the same thing all over again. *sigh*
I have maxalt, but it doesn't seem to work when I take it without the fioricet. Probably means it's not working for me. *shrug* I don't know if I'm going to make it without some prescription relief today, but I am going to try, like I do every day.
I am learning alot about medications that have worked for others from Ronda's Migraine Page.
http://www.migrainepage.com/ It is a wonderful forum full of supportive fellow migraneurs. Fentanyl, Duragesic patch, Actiq lollipop, Cymbalta, Inderal, Stadol. I haven't tried these ones yet. It's nice to know there are meds that I haven't tried, yet, you know?
I have been thinking about asking my doc, who is wonderful!, for dilauded suppositories (or if it comes in pill that is better. I hate sticking stuff up my butt, lol). And for a prescription for Toradol injections. I am worried about having this stuff in the house though. No, not for my family, or my daughter. I am worried that I will use it often because I am in excruciating pain often and I don't like that idea. I am still debating whether it is better to drive the hour, go through the humiliation of being thought of as a drug seeker and criminal, to the ER to get this kind of treatment. I'll talk to my doc and let her decide what is best for me in this case, since I can't decide. But, I am feeling so desperate.
Only 3 more days until I can call UCSF and find out if Dr. Ahn or Dr. Raskin will accept my case. I want my trigger point shots so that I can have some quality of life. I'll still have migs even with the injections, but it's not as severe and the duration is cut down alot, and it's not every single day.
What are trigger point injections? Well, they take this big needle, full of steroid (cortisol, I think), lidocaine and something else. Then they stick that in my brain and inject. It's very painful, and the pain lasts for up to 3 days afterward. I will be flat on my back with an icepack on my head for those 3 days. Then presto! My h/a is gone for awhile, about 4-6 weeks for me. Most people it lasts anywhere from 1-3 months.
I'm hoping that Dr. Raskin or Dr. Ahn (whoever I see) will have some other options to offer me as well.
Guess that's enough for now. I am going to get dressed and try to act like a normal person for a little bit, until the pain worsens. Then, I'll be on my butt the rest of the day. Oy!
Poem: MY BRAIN
MY BRAIN
by Jessica
Lights SCREAMING into my eyes
Blinding painful terrorize
My brain
Moving, stumbling grinds my mind
Bombs go off, stepping on mines
My brain
Rest my head, wish it was lead
But no, the knife twists
My brain
Voices shout only they’re hushed
Anger, frustration, torment, depression
My brain
Crying out for relief, No one hears
No one cares, No one understands
My brain
Lost in a sea of hopelessness and despair
Lost in an ocean of pain, grabbing at
My brain
The pain builds and churns and overwhelms
Visions and auras and wishing for spells
My brain
Just give me drugs, give me death, give me peace
Let me lie still in the darkness and the cold with
My brain
Relieve me, Faith leaves me, Hope has abandoned me
Consciousness loss, level of 10, bliss for 3 seconds
My brain
More pain from a shot, I welcome the pain, grasping for help
five minutes, ten minutes then peace at last
Relief, bliss and I move into space, into the abyss, into the fog
Jellied legs, Jellied brains, serenity encompasses and I sleep
My brain is still...for now
Frustration with the Medical Field
So, today was a pretty good day. The mig was up to about a level 5 by about 1ish, but I took a fioricet and it went away pretty quick, thankfully. Don't get very many of these kinds of days.
I'm dealing with alot of anger against the medical system, right now. I'm frustrated with the policies of hospitals where they take patients on a first come first seen basis, rather than on the level of intensity of their pain or the criticalness or urgency of their needs. Yesterday I even read about someone who had to wait almost 8 hours with a level 9 migraine to be seen. It's really disgusting that medics don't take migraines seriously. Sometimes I wish there was like a simulation program that all med students had to go through to find out what it feels like to have a migraine.
As a former nurse, I never read or was taught about migraines, the symptoms, the types, or the tremendous pain people who have them experience. I think that it should be incorporated into the curriculum. It's just so beyond comprehension, but I think that it's not considered serious, because it's not visible like a GSW would be.
And I'm pretty pissed off that when I have to go to ER, which believe me is an absolute last resort for me, and you'll see why in a minute, I'm treated like I'm a drug addict just looking for her next fix. It's bullshit! For me to go to the hospital, I have to be at the point of almost passing out from the pain. Firstly, I have to go down this horrendous dirt road with potholes in it for about an 1/8th of a mile. It's horrendous and by the end of this road, I'm totally in tears. Then, I have to drive an hour to get to the hospital. (We live in the sticks, can you tell?) Why would anyone in their right minds think that I'm going to that length just to get a fix? I mean, I've heard there are drug dealers on almost any corner. Don't think I've met any of them, but probably if I was looking I could find one closer than an hour away! lol Oy Vey!!
Well, guess that's it for now. Feels good to get some of that stuff off my chest and outta me head.
Oh, good song for migraneurs. The Ramone's, "I Wanna Be Sedated". lmao!
