Wednesday, December 28, 2005

The Morning Raunchies

I know I promised that I'd be back yesterday, but my head and body have been completely rebelling against my extra holiday activities this year. I have been in so much pain, it's almost unreal sometimes, except for the fact that, I've actually been in this much pain and more before. One good thing about having been in alot of pain before is that when you're in a great deal of pain, you can tell yourself, "I've been here before and I survived it, so this too will pass." This too shall pass.

I had a really difficult early afternoon today, though. The tough thing about this is that it just hits you, "BAM!!" like that! There's no long build up, or warning, it just hits.

It all started when I went to the bathroom. You know how much fun that's been lately, right?! (I blogged about it before.) So, I have to go and I started crying and it hurt so bad. But, I did finally get rid of what I was supposed to get rid of. Then, I bled. It seemed like alot. Like, I'm toward the tail end of my period, but where I was bleeding from was a totally different place. My tp was soaked in bright red blood. Then, the water in the bowl turned bright red. That would scare a lesser man than I, but I am not a man, therefore, I was not very alarmed. I think I was just really angry. I'm really mad that for my head to feel better, I have to have hemheroids. For me to have just the tiniest bit of comfort, and it's not alot, because I still am not nearly up to the point of normalcy in my lifestyle- Not even! -I have to deal with severe constipation, bleeding from the butt, and intestinal pain. I already have IBS with constipation, so this has just made things that much worse. I honestly didn't think things could be worse than the way they already were with my IBS, but I'm now living proof that they can be.

So, I get through all of that and it's like my whole body decides to freak out. I started getting hot and getting the sweats, so I turned the heat down. That rarely happens,b ecause of the Reynaud's. I can't tolerate the cold at all. I can literally get frostbite just from sitting in a chilly room. Seriously. So, I turned down the heat and then I got the shakes and got super cold, so I got under my electric throw, a wool afghan and some other blankets, but got too hot, so I threw the blankets off and just ketp the afghan and the electric throw on.

Now, I'm curled up in a fetal position on the couch, shivering, with intestinal cramps and the nausea just rolls over me like a wave. I felt like throwing up and then I got stomach cramps and my head started hurting. And I thought, Gosh, if anyone saw me right now, like if I was on tv, they'd laugh, because no one would believe that this is my real life. And, now, I've got a reprieve and all the symptoms are abated, for now.

This totally bites. So, was it worth going to my mom's and being with my brothers for a little family Christmas party and dealing with the noise of little kids and noisy men? Was it worth being present with my own li'l fam to open presents and enjoy watching my daughter's face light up over her gifts? It seems very strange to me that I'd say, yes, I'd do the same thing again, even though it means that I'll be paying for it with my life over the next couple of weeks, literally. It seems strange that anyone would make that exchange. But, I'd be in pain whether I did that stuff or not. Maybe the pain would not be as acute as it is right now, but I'd still be in pain, because that's how I am all the time, anyway. This way, I at least have some nice memories and got to have some fun, which is sorely lacking in my life right now.

I hope your Christmas was good, too. I hope that whatever pain you may be in right now, was well-earned by having a fun and merry holiday get together with loved ones, be they family or friends.

Tuesday, December 20, 2005

Closed Until the 27th

Hey, friends! I am going to take a mini-vaca until the 27th from writing. But, I'll be back, so keep me on your favorites list and maybe I'll have something interesting to say on the 27th. lol Thank you for your comments, support and for reading my blog this year. You're just too kind.

Have a Merry Christmas!

Thursday, December 15, 2005

Must Have Books

Ok, for those of you who can still read, I want to recommend two books. Now, you're going to say, "Jess, how can you recommend a book to us, when you can't read it, yourself?" Well, though that's true, my mom is reading one of these books to me and the other is written by someone I've come to know and admire as a vital resource, learned researchist and fellow migraneur and I'd trust anything she said without reservation. Put these on your last minute Christmas Lists, because they're so worthwhile and should be the first books you read in the New Year. You can purchase both of them at Amazon by clicking the title bar above.

First is Teri Robert's new book, and long anticipated, might I add? Living Well with Migraine Disease and Headaches : What Your Doctor Doesn't Tell You...That You Need to Know. I hope this book comes out online so that I can read it, because she has received awesome reviews on her book. She's spent years researching the subject, so she deserves every bit of praise that she's received on the culmination of her wisdom. If you want to read an interview with her by the World Headache Alliance, click here. And, Teri's website is on, here. Way to go, Teri! You rock!

The other book is by Paula Kamen, also a fellow migraneur. My mom's been reading this book and then she gives me a summation of the chapters in our weekly phone calls. So far, Kamen's experiences eerily mirror my own, so I think that if you're a chronic migraneur, or even someone with chronic pain not necessarily from migraine, you're going to really be able to relate to her stories. She has alot of good advice on how to deal with it personally, professionally, and medically. She's been through alot and this book doesn't read like a textbook. Rather Kamen is informative, yet entertaining and poignant. She's a wonderful writer and it just so happens that she is a freelance writer as well. She has her own website here, but also has done an interview with The World Headache Alliance.

Goodbye to the Godfather of Migraine Treatment

Can I nominate someone for sainthood? If I could, I'd nominate Dr. W. G. Speed, III. This wonderful man, and fellow migraneur, was just as shocked as we get, by the abusive and dismissive treatment he received when he sought medical attention for migraine pain and he decided to do something about it. That was back in the 1930's. Goes to show how slowly things actually change in the medical community.

In the sixties, Dr. Speed began touting ergotamines as a treatment for migraine pain and also proved the effectiveness of inhaling the ergotamine, rather than taking it in pill form, as a faster and better way of utilizing the medication. Throughout his career, he was an enthusiastic supporter of finding new and better medications to treat migraine disease.

As a matter of fact, if it weren't for Dr. Speed, migraine would still be classified as a psychological, psychosomatic disorder, rather than a disease with specific physiological epidemiology. According to his friend and colleague, Dr. Long, who also studies headache and chronic pain, Dr. Speed was all for "whatever therapy helped to treat patients, and he moved quickly to embrace the new drugs."

Toward the end of his career, he was studying how head and cervical trauma effected migraines and headaches. Dr. Speed died at the age of 87. Dr. Speed, you did your best to change your field for the better. Thank you. He died in November, but I wanted to memorialize him, here, because I thought it was fitting and because it encourages me to know that there are people out there who care about this disease and are working to find better and better treatments.

I hope they find a cure for it in my lifetime. If you'd like to contribute to research, please, click the title of this blog to find out how you can help be part of the cure.

Tuesday, December 13, 2005

A Visit From the Migraine Fairy

I think today is as good a time as any to talk about Migraine First Aid and Treatment. People always ask me, "How do you know when to go to the ER for your migraine?" Most migraneurs will tell you that they'd rather have their entire upper jaw removed by a dental student, before they'd go to the ER for rescuing. Shocking, isn't it? Well, it wouldn't be shocking to you if you were a migraneur. Most migraneurs, when we hear statements like that, will just nod their heads, understandingly, and give an empathetic murmur. We get it.

When most people break an arm or badly sprain an ankle, they don't think twice about going to the emergency room to get treated. Why do migraneurs always go through enormous internal conflict about going when their pain levels reach 9 or 10 on the pain scale? It's because our first few experiences in the ER were so negative that we left feeling like a skanky low-life addict or at the very least, didn't get any relief there. You'd be amazed by the kind of remarks that migraneurs get when they go to the ER. Check out my blog entry, Oh The Things You'll Hear, and an even sadder entry about a woman who actually committed suicide, because of how she was treated at an ER visit.

There is something that we can do to prevent being treated like scum by the ER staff, though. Here's what you do. Keep a migraine diary, firstly. I can't imagine that any junkie would keep a migraine diary just so they can get a fix. That takes away the doctor's assumption that you're just there to get drugs from him, because your neighborhood dealer is skiing in Vale for Christmas.

The next thing you can do is have our pain management doctor or whoever treats your migraines fill out this Emergency Room Treatment form. Treat it like gold, because in it, your doctor will put how he wants you to be treated if you end up in the ER, because of migraine pain. There's one for Cluster Headache sufferers, too. I keep both on me, because I've had to go to the ER for both forms of head pain.

You'll be amazed at the difference in how you're treated when you go to the ER with the support of your personal doctor and backed up by your migraine diary. You may still have to wait in the ER, but you won't be abused as badly as before. And, if you do end up meeting up with a total jerk, then you have proof that he was negligent in perfoming his duties and can make a complaint against him with the Medical Board and his hospital.

It's possible that your doctor will balk at filling in the forms for you, but push him as hard as you can to do it anyway. The ONLY reason a doctor would balk about it is because he's worried on stepping on another physician's toes. I'd tell him to suck it up and get a pair of ovaries! Be a Woman, dude! It's not his head on the line, it's yours.

I hope that none of us has to go to the ER over the holidays, but I wanted to give you some resources, just in case. So, make sure that your doctor fills out those forms before he goes to Jamaica for the holidays. If you do have to go to the ER and you use the forms, please, let me know what the experience was like. My experience has been that my visits were so much easier to deal with once I had those papers in hand. Make sure that you keep them up to date, too. Whenever your meds or treatment plan gets changed, you need to update your forms.

It's also a good idea to always carry a page, jsut a Word.doc will do, with your allergies, previous surgeries/major hospitalizations and dates, and your current physical afflictions listed on it. I have this down to a science, now. When I go into the ER, I hand all the forms to the nurse, so that I don't have to talk more than absolutely necessary. She can just copy all the info down from the forms. Then, she makes a copy of my form and my diary, and intake is done and I'm credible. Voila!

Monday, December 12, 2005

You're So Vain...

"I walk, invisible
No one sees
A pill to swallow
Makes me disappear
But, they couldn't see me anyways"

So, I actually got dressed today to go to a teacher conference at school. And, I'm putting on my new belt that I bought about a month and a half ago, when I discover that it's already too big! There's half a hand's width between my belt and my belly. Yay! I'm so happy, because I've gained alot of weight from inactivity over the past two years.

The weight where I feel sexiest AND healthiest is at 130-135#. I'm 5'71/2", so that's a perfect weight for me.

I've gotten up to 165#'s, which is very big for my frame and build. Ack! So, because of the evil (?) side effects, I've lost 20#'s so far, which brings me very close to my goal weight. Wow. When I get back to my goal weight, I'll fit in all my clothes again. Right now, I mainly hang out in some generic-ish jeans (I think they're gloria vanderbilt) and sweats.

I have visions of Calvin, Anne, Amalfi, Emma, Giorgio, Valerie, Ann Taylor, Tommy, Ralph, Donna K, Hugo and all my other favorite 'friends', dancing in my head while I dream these nights. Ahhh. Back to normalcy. Not that I can exactly wear them in this little hick town where Levis and Wranglers reign supreme. Besides, the dirt is red, seriously, around here and it turns everything it touches, red. And washing the clothes doesn't take it all out, because the iron is in the water too. It sucks. I know, I sound like a total snob. Well, I am one, so there! lol

So, which wonder drugs are taking away my appetite? Duragesic, Adderall, and the dilaudid all have appetite suppressants in them. So, there's another side effect of my wonder-drugs. At least this is a good one...for now anyway.

Sunday, December 11, 2005

Alice, Can We Talk?

"White Rabbit Lyrics
by Jefferson Airplane

One pill makes you larger
And one pill makes you small,
And the ones that mother gives you
Don't do anything at all.
Go ask Alice
When she's ten feet tall
. "

Ok, so I hope you don't mind, but I've got to talk about these freakin' side effects. The duragesic patch makes me so constipated it seriously isn't funny. I mean, I literally cried today as I sat on my throne. This is so not good. And, worse, (I know, go ahead and give me a smack), I forget sometimes to take all the stool-softening-laxatives/laxativing-laxatives and then I'm in real trouble. This last time, it took seven days, that's a week for anyone who sucks at math, like me. That's not good.

Too graphic? Tough nuts. This is my life and my blog and I'll give whatever details I want. Just be thankful that I don't spill all the beans. (Of course, even if I could, it would take a week, so you're not in any real danger).

So, here's what I currently take for constipation. Let me know if I've missed anything, ok?
  • 1 c. soy milk (chocolate, of course)
  • zelnorm
  • stool softener (safeway brand, believe it or not. It doesn't hurt as bad as the other brands do).
  • miralax (that's the stuff they give you to drink before you go get your colonoscopy)
  • fig newtons

I think that's it. I mean, look at that! The miralax alone would make most people spend the day on the toi. Not Irritable Bowel Me! I think I might be in a little trouble, so tomorrow I call my doc's office...again.

Oh, but here's the funny thing about it. I think I'd be losing alot more weight right now, if it wasn't all jam packed in my intestines. lol And, actually, despite that, I have lost close to 20#'s. More on that, tomorrow. :)

Saturday, December 10, 2005

Please, Be Patient

I'm working on this blog, trying to update it's look and get some links up as well. So, over the next several days I'll get that finished, but meanwhile, please have patience with my ineptness as I get this blog organized. Not easy for an ADDer! lol Thanks.

Well, That's Just Bass Ackwards!

"Erich Kastner's, (1899-1974), children's book "Anna Louise and Anton" (1931) includes a definition of migraine which became a famous saying in Germany: "Migraine are headaches, even if you don't have any".

It's funny how things get turned around. Take this quote, for instance, this writer was talking about a type of migraine where you get the aura, but no head pain. The only problem is that the mainstream medical community took that to mean that you have the migraine because it's convenient for you to have one and that turns it into a psychological syndrome rather than the clinical disease that it actually is. It makes it easy for people to put the blame on the victim rather than have to make the effort to take action to prevent the pain or rescue the patient from the pain.

Kastner wasn't trying to say that I'm saying I have a migraine, because I want the attention, or don't want to do something that I'm supposed to do. Anyone who has children who have migraines knows that the last thing your poor kid wants to do is spend the day worshipping the porcelain god and laying down in bed with an icepack on their heads when all their friends are at the mall or outside playing ball.

Rather, Kastner was refering to a kind of migraine characterized by a lack of pain and just having the aura. I've met people online with this kind of migraine. It's really odd. I get both aura and migraine and I can only imagine how disconcerting it would be to only have the aura and never get the pain afterward. I'd have to say that it would be just about as bad as if they got the pain, too, because the aura beforehand is such an uncomfortable experience. You can read more about the kinds of symptoms you get with an aura here.

Acephalgic Migraine shouldn't be taken lightly, but it is. I mean, if there's no pain, then why have it treated? Just tough it out and get through it, right? But, it can be serious in that patients with this kind of migraine can completely lose their field of vision. I've also learned that this kind of migraine is sometimes diagnosed as occular migraine when really it might be an occipital migraine and there is a difference between the two. (I found that fact to be enlightening, because I was diagnosed with occular migraines.)

Often, patients are misdiagnosed, because the patient doesn't know how to describe their migraine accurately to the physician and the physician doesn't direct the patient on how to do that. So, if you experience this phenomenon, make an appointment to get the right diagnosis, because if it's left untreated, you could lose your field of vision. It's not something that you want to let go on, untreated and undiagnosed, for too long.

If I were more presumptious, I'd say that I wished I could get acephalgic migraines, instead of being in chronic migraine pain, but I've learned not to wish for anyone else's problems. They look good from where I sit, but if you talk to the people who actually experience this type of migraine, you learn that it's not a walk in the park. The grass never is greener on the other side of the fence, it just looks that way. They suffer every bit as much, just in a different way. It's still debilitating and, I believe, more frightening than having the head pain that accompanies the aura in case of migraine. I think it is scarier, because when it happens, it's out of the blue. When we have a migraine, most of us can say we knew it was coming, because we had an aura for so many hours or days beforehand. But, if aura IS the disease, then you've got no warning and all of a sudden you're sitting at a stop light and can't remember where you are or why you're there.

Acephalgic migraneurs can experience a variety of symptoms or just one or two of them, but from what I've been told by other's with this type of migraine, they've experienced the inability to speak; one side of their face feels "frozen"; temporary paralysis; inability to organize a thought; confusion and memory loss; as well as the usual symptoms of aura: nausea, vomitting, diarhea, mood change/irritability, the Alice in Wonderland Syndrome and a host of other symptoms. And this can last anywhere from an hour to a few days, depending on the person, just like typical migraines. I'm not sure that that would be better than what I experience and may even be worse. At least when I'm in pain I know who I am and where I am. I couldn't imagine getting stuck in the middle of nowhere, not knowing why I'm there, or being unable to move or speak for hours. I think that that might be worse.

Whether or not you experience head pain, you're still having a migraine if you experience aura and it's just as important to get diagnosed and treated for this disease. Migraine abortives are made for this very situation. People with the head pain are told to take them as soon as they get an aura in order to cut the pain off before it even begins. It's better to get rid of it sooner than later.

Tuesday, December 06, 2005

Imagine That!

Ok, you may want to sit down for this one, or at least hold on to something sturdy. What I'm about to tell you may come as quite a shock. There is this movement called The Carnival of Compassion. The main point of this "Carnival" is to bring patient bloggers together and it "addresses issue pertaining to life, death, healing and disease." To learn more about it, just click on the title and it'll take you to that link. It's a way to learn about how different patients deal with their disease, new treatments or medical breakthroughs that directly affect their care, and about their caregivers and how they deal with the patient, the disease, and themselves.

I think this idea is long overdue. But, what's truly shocking is that this was started by a doctor! Yes, you read right, a doctor. It's like a miracle. Thus, I am encouraged a very tiny bit that there are good doctors in the world who do want to cultivate compassion in their lives and practices. I sure wish there were more of them, though. I wish there was an obvious, united front full of compassionate doctors but, for now, I will be thankful that there is at least one compassionate doctor in the country, Dr. Dell. Perhaps, as his idea for this Carnival catches on, the spirit of compassion will spread to his colleagues and thereby trickle down to us, the patients.

Just imagine going to the ER with a migraine and not being assaulted with a bunch of bullshit about how you're just a desperate junkie out to use the poor, naive, defenseless doctor as your dealer; but instead you are ushered quickly into a dark room where a doctor shows up only a couple minutes later, (rather than 2 hours later), and in hushed tones, (rather than the usual loud, gruff, snarl), asks how you're doing and what usually works for your migraines? And, just for one luxurious moment, imagine being given rescue medications immediately and, having actually been listened to by the doctor, you're given the exact medications in the exact dosages that you tell him have always worked for you in the past. (Most of us would be happy if the doctor would just call our PCP and ask her if we're on the up 'n' up, and they don't even do that!)

Imagine the doctor believing that you're in pain when he sees you curled up in a fetal position, crying your eyes out. Imagine a doctor that pats you gently on the hand and tells you that you're going to feel a whole lot better after this initial little stick? Imagine having a doctor who is willing to do a little research to find out if there are any medical treatments, any at all, that he didn't suggest, yet, for your pain. A doctor who won't just give up on you, because he hasn't found something that works for you yet? A doctor who, after exhausting all other avenues, will put you on a pain killer without making you feel like it's basically your fault, somehow, and you're just a loser who wants drugs and won't cooperate with the other forms of medication. (Is it my fault that I'm allergic to a quarter of the medications, a quarter of the medications are contraindicated because of my other diseases and the other half don't work? I'm not trying to be difficult. Being on medication of any kind is not my idea of a satisfying lifestyle.) Imagine not having to beg for refills on your medication when you run out a day or two early?

Imagine a world with doctors who really do care about their patients more than they care about their own prejudicial fears? What a wonderful world to live in that would be. What a difference in how a patient would feel about themselves as they leave the hospital or office. Instead of leaving feeling like a big, fat zero who isn't any better than the gum this doctor scraped off his shoe this morning, you leave feeling like you're a human being to be respected and treated with the dignity you deserve as one of God's own creations? Imagine that!

I'm really sorry to have to do this, but you have to snap out of it and come back to the real world, now.

Sunday, December 04, 2005

Migraneur's Bill of Rights

It's so important that we know these "rights" by heart and BELIEVE THEM! Because, when we can have these truths cemented in our minds, we can hold our heads high, no matter what situation we're in and command the respect that we deserve, and need. Also, I think it will take the apology out of our voices when we have to tell someone, "No, I can't make it to that event right now," or "I wish I could help you out with that project, but I've got as much as I can handle on my own plate, right now."

I was thinking about how if I walked around with my head shaved bald and wearing a hat, I'd get a whole different reaction from other people than I do now. If part of Migraine Disease was losing my hair, you can be sure that I'd get allot of attention and empathy for it. People wouldn't be telling me what I "should" be doing, i.e. you should be working form home, you should be doing housework, you should be doing all the shopping and errands, etc. I wouldn't hear, "you should be's". I'd be hearing, "is there something that I can do for you's?"

The biggest problem with this disease is that it's invisible to everyone but me. To me, it's more real than the chair I'm sitting on. Even on good days, I can't completely enjoy the good feelings, because I know that in the shadow is the dark Monster, ready to pounce at its perverted whim. So, my gift to my fellow-migraneurs this year is permission to say, "I'm important. I come first." Because if Mama ain't happy, ain't nobody happy.

From American Council for Headache Education (ACHE)

I have a right to...
1. I have a right to be taken seriously by my physician when I go for treatment of my headaches.

2. I have a right to complete and thorough medical examination, including a medical history and complete neurological evaluation.

3. I have a right to appropriate diagnostic testing, including neuro-diagnostics, CT scans and MRI scans, if necessary, when my headache is first evaluated, and when the headache pattern or severity changes.

4. I have the right to be referred to a specialist - for example, a neurologist, a headache specialist, or a headache clinic if my headaches do not respond to my primary physician's treatment, or if my primary physician feels a specialist's care is needed.

5. I have the right to receive specific headache therapy, if needed, instead of non-prescription drugs, narcotics, or combination analgesics that may increase the problem.

6. I have the right to ask for a comprehensive, written treatment plan that will tell me exactly how to use my preventive medications and non-drug preventives and, complete instructions on what to do when a headache occurs.

7. I have the right to return for additional help whenever my treatment plan seems to be inadequate to control my headache.

8. I have the right to be treated courteously and responsibly in emergency room, if a severe headache fails to respond to my usual treatment plan.

9. I have the right to expect my insurance company to recognize migraine as a legitimate medical illness as any other illness such as diabetes, arthritis, etc.

10. I have the right to expect those around me - family, friends, co-workers, and others who come in contact with me to make an effort to understand my illness and to cooperate with me in my efforts to live a full, rich life.

Thursday, December 01, 2005

A Couple of Our Supporters, Please Help

Thought it was really interesting that our president is supportive of migraine awareness and supportive of the National Pain Care Policy Act. Yay! Now, if only he were the Surgeon General! That would REALLY be something. Well, one can wish, can't one?

Please, support migraine research and the development of effective medication by purchasing a wristband. Even though it's a small donation, every little bit helps. You can go to the link above to donate. Please, do that for me. It would mean so much to me. It is such an important cause. Just think, you could actually effect a positive change in people's lives and change the future. Yes, I really do believe that! Stop laughing! I can be an optomist once a year. Just don't expect it all the time. (lol) But, seriously, this is something tangible and exciting. Something that you could really be proud to support. In other words, put your money where your empathy is. Thank you.

Ok, so now that you've done it, tell me. I want to thank you personally and I want to know how you felt when you clicked that link, ok? Thanks.