Well, not this picture, a trigger.
This is a collage my daughter, Cinderisa had done, and was entered in the Festival of Arts for our district. This is a district-wide Arts festival, showcasing, not just visual and tactile arts, but music, dancing, chorus, colorgaurd, drum line, orchestra, and the list went on.
It started from the Kindergarten level to the High School. Every hallway was filled with beautiful artwork, jewelry, ceramics, music; it was fantastic! This is one of my favorite events of the year.
This and her final concert. Which is Thursday. Unfortunately, I am going to miss it. I have tickets to go see Evita. Hey, Mom's gotta do what a Mom's gotta do. The real suckhole thing is this: they are playing some real awesome stuff this year! Phantom, Pirates of the Caribean, just to name a few. I really am very bummed to miss it, but...... this show is only here for 4 nights and I do have my tickets. Stink
Anyway, there are some really awesome things I like about her collage that I can relate to; but I just wondered if there was anyone else out there that could. I'm sure she would love the feedback.
On an interesting little note, and a very personal one at that, I have found a unique little trigger I gave myself while I was trying to alleviate the woes of the migraine blues. I found myself going round and round in a battle of "Catch 22" with fluids.
A word of caution - if you are in the midst of migraine and are looking to hydrate or re-hydrate, be very cautious of the ingredients in your bottled fluids. If they contain "sucralose" or "sucrose syrup" you may think twice before drinking twice. Why? Your body just doesn't absorb them thar ingredients, thus you just poo them in liquid-like form, rapidly, if you continue to drink and drink and drink them.
Case in point, Moi: The first week of the month, I end up at infusion with the monster. I'm the usual squinting, "headachy" nauseaous self. (for lack of words right now), I have two bottlesof said syrupy water with me. oh yummo. Start infusion a little later. drink drink. Notice after a few days, and oh four bottles of the stuff a day, lots of diarrhea. hmmm, sometimes that happens with migraine.
Two weeks go by, OH, WAIT! I had also started Melatonin to get some MUCH-needed sleep. Whew, almost forgot that. so anyhoo, I'm sleeping, I'm drinking more of the water because the weather was actually getting pretty nice here. The sun was, whoa, shining, and, AND, the weather was warm. I don't care much for water, it makes me gag, and gagging is a precursor for barfing, which will in itself is just gross, so I like the taste of the lemony syrupy vitamin water that I was drinking. Plus, I felt I was getting all kinds of oober benifits with the added B vitamins. blah blah blah. drink more tastey syrupy water.
In the meantime, I'm noticing a need to, well, go to the "office" a little more often. than usual. Me poo has started to um loosten. By the end of the week, loosten had come to a full-on explosion. Every few hours. Which, naturally made me drink more. Didn't want to DEHYDRATE! Each time I'd eat, my food would slide into home within 1 1/2 hours. I was running like A-rod, faster, faster, faster each time. God forbid if I was in public!!! Oh, I do NOT use the public restroom, by the way. However; in this case, it was either explode in their place, or my pants - down my legs, up and over my belt. Hmmm, decisions, decisions. The one time I had to run, I decided was the last time I'd be in public until it was figured out.
Naturally, another storm hit me in the skull. The more I "liquidated my assets," the more I drank. For fear of becoming dehydrated, it's all I could do, drink more of my yummy water; and it hit me - like the brick that hit my head, maybe it's the vitamins in the water doing it!! So I took myself off the water for a week.
But I was still having the. problem. So I thought, maybe the Melatonin?? I took myself off that. We decided, maybe there was something else going on; we called my internist. They had me in that day, did all kinds of blood work, and I had to (give a sample), to which I apologized for! Oh the questions the questions I was asked. When the blood work came back ok, Deb and I were talking about the water; and I read to her the ingredients - AHA! It was the sucralose. I cannot absorb it so my body just - gets rid of it and everything else with it. I'll say.
Thankfully, I'm not having the problem any longer. I'm no longer overloading on the stuff either. I've decided to buy myself fresh lemons, which is really what I prefer in the summer with water when it gets hot. So now, I just make myself a 2 liter of filtered water with sliced lemons and drink that. No sugar, or sugar substitutes. I can take it on the run (and no puns intended either) with me, since I have plenty of bottles now. It's very refreshing and I know I'm being rehydrated and I no longer have to worry about needing to run to the nearest dirty potty. (oh ugh)
Hey, stay far away from those sugar substitutes - they just mess with you more ways than you want to deal with. Now you know where I've been the past few weeks. fun fun fun. do I lead an exciting life or what? Wait, I also had a bridge fitting yesterday. Let's see, what else......oh, Chrisarella had an ear infection last week.
WAIT A MINUTE!!!! This is too funny. Lastnight, we hear this loud THUD-BANG from her room, and then her squeeling and crying. I, being the "wonderful" Mom that I am, run up the stairs to see what was the matter; there in her room, the center of her room, nothing around her, she is on the floor, curled in a ball, crying.
ME: "What happened!?"
HER: "I fell"
ME: "ok, how?" I'm looking to see if she fell OFF of something, but. nothing. she is in the center of the room.
HER: (remember she IS A BLONDE) "I tripped over my foot"
ME: (trying not to laugh) "excuse me, did you say you tripped OVER your own foot?"
HER: (also now trying not to laugh thru the tears) "yes, over my right foot"
ME: (laughing hard) "so, your left foot tripped OVER your right foot, and you fell???"
this is where Cinderisa, who is also now laughing (and on the phone with prom date also laughing) walks in the room, followed by Nicholas, who is trying to replocate what she must have done. this has made her angry, but she is laughing too hard to get mad.
downstairs you hear the sound of screaching, the sound of Frank mimicking the sound she made when she was crying. Now, she is in hysterics. I give her frozen gelpack and explain to Frank what our blonde has done. When she comes down, she is giddy, goofy and limping. Gotta love blondes.
Now that's entertainment.
You read that right, Marisa has been invited to a Senior Ball. More to update later.
Tuesday, April 29, 2008
Well, not this picture, a trigger.
Tuesday, April 15, 2008
THIS is what I woke to. Add to that some pounding of the cranial nerves. Once I came to the top of the stairs, I noticed everything started to move. around. and around. and around. In a dizzying array. A quick call to the neuro office with a plead to GET ME IN!!!!! NOW!!!!!
Now, I wait. wait. wait. I wait for the phone to ring, hoping it's Linda, my favorite person of the day bringing good news, telling me I can be infused with the "wonder drugs" tomorrow. I wait for my abortive to kick in, its final day - today. It's not working.
and so, I wait. This is the week I was supposed to have fun with the kids. They are off for spring break. I was planning a trip to the Museum and the Zoo. (Along with probably 10,ooo other crazy parents.) Nontheless, fun with my babes. Hey, maybe it'll just shut itself off. It can happen, right!
riiiigt, and I might see this out my window today, too.
On a better note, we received a letter from Philip yesterday. He's such a -hmmm, how shall I put this?? Unique young man. He addressed our envelope, "The Dorks." Only Philip. We, of course laughed; very excited to get a letter from him, and at his humor he can still muster, considering where he is and what he's doing. When I opened the letter, it was addressed, "Hey Nerds!" He wants to know how the Giants are doing since last season's draft. He's anxious to get another dog (ugh) here we go. he says he should be home by Oct. I sure hope so. It's just not the same without him here. And he's not the same as he was, we're learning more about PTSD.
I hope and pray he will be able to get the right help. We do know he may not notice he even has it(PTSD) until he's been a civilian for a year. He serves for another year. That is, unless they decide to keep him longer.
Guess what field my Marisa has been looking at? shocker right. I'm sure Philip will have a lot to say about that when he gets home. He has already said more than enough to try to dissuade her, about women not being very respected as fighters. I'm not sure she really understands that at her age. I don't want to really dissuade any dream she does have, as a Mom, that is crushing a part of her spirit.
Ok, I'm off now. hoping someone out there is having a painfree dayDeborah
Monday, April 07, 2008
Still trying to get the kinks out; like for instance, why that little box up there on top is there, I have NO idea. but I'm trying my hand at well, this. A new look. Fresh, pretty - far from the wintery, stormy look I'm trying to flee from here in NY.
I'm not finished. I still need to get my sidebar back and running and updated and fresh. The sun is shining here, and it is 60 degrees out. I've sat in front of this too long today. Thanks mostly to Jeff for leading me to the site, here I have rendered myself completely useless otherwise. And you should, too. It's really quite addicting.
Hope you're having a pain-free day.
Saturday, April 05, 2008
Migraine: Paroxysmal attacks of headache, frequently unilateral, usually accompanied by disordered vision and gastrointestinal disturbances. Thought to be the result of vasodilation of extracerebral cranial arteries.
ETIOL: Unknown, but a family history of migraine will be found in over half of patients. It may be precipitated by allergic hypersensitivity or emotional disturbances.
SYM: Headaches associated with the sensation of seeing zigzags of light, called scintillating scotoma, vomiting, and at times diplopia, unilateral sweating and focal symptoms. Sharp, stabbing pains frequently in temporofrontal region.
Treatment: Rest in quiet, darkened room during attack. Ergotamine tartate proves efficacious in most cases but should be taken at onset of the attack.
(Tabers Cyclopedic Medical Dictionary; edition 15, copyright 1985)
My, but we've come a long way since 1985, haven't we! Not only in our recognition or definition, but treatment. Origin, or Etiology as stated, interested me because of the first word, "unknown."
Though some of the origin is unknown; thankfully, research has blossomed over the past 23 years for those of us who must suffer.
So, how do I cope with monster as it embarks on me? Well, as you can see from the pictures above; pretty much like that. That is, when it beats me to that level anyway. That being a level 10.
Like most Migraineurs on this blog block; I've been around the pharmaceutical candy round, too much. That is to say, my body is and has, paid a price for the many high-toxic drugs I have put into it, just to get relief. Unfortunately, it has left me unable to use most of the "good stuff" out there, when I really need to.
My only abortive now, is Toradol; which I take, with caution. So as not to cause myself the dreaded rebound we greatly fear. When this fails me, I call my doc and into the infusion center I go. There, I receive more "candy" the body hesitantly recieves.
My veins have become very hardened to the idea of the invasion. They roll and burst and laugh at my nurse as she gets more and more frustrated at my vascular system. Over and over she tries; the right arm, then the left and back again. She'll call in another nurse. Heat my arm. Just getting a line started usually can take upwards of two hours. But I am patient with her; this is not her fault, it is the fault of the disease process, the medications of past infusions, vascular constriction of migraine itself.
When I was hospitalized, I would get a PICC line inserted. But because I return for infusion for 3-4 days, the IV is the only thing necessary. I did inquiry about a port two years ago; but because of the risk of a little thing called - stroke, my doctor refused. I'm ok with that. Seriously.
The coping mechanism is, I'm finding, very different with each ensuing migraine. They, the migraine, that is, are very individual. Some can seem very mild compared to others that come smashing in on me, unannounced. So the coping is always somewhat different and unique.
The curtains are almost always closed. Even if the sun is hiding. Because even the faintest of light is painful. Blankets are a necessity, and they must be up over my face. my hand is almost always on my face, as well. I keep a bottle of Lavendar spray next to my nightstand; because I find the scent very calming, and I can tolerate it when I can't tolerate anything else.
My beloved dog knows when the beast is coming, and he seems to try to shield me from it. He can't just lay at my side or my feet, but ON me. Oddly, even at 100 pounds, it's comforting to know he's with me.
Earplugs. My new favorite friends, seem to be company when I sleep, or if I'm at an event that makes loud noise. I should have worn them when I was at Marisa's Drumline competition. You'd think, right.
My favorite drink at the time of the beast, would be my water. But it's not just plain tap water, because that makes me gag. Literally, gag, and when you are already nauseous that's not something you want to do. I like the lemon flavored Velocity water that Wegmans puts out. It's all I can tolerate at the time. And though it's said you should eat, I cannot. I don't know many who can. This is the only thing I can tolerate at the time. I drink a lot of it. At least I'm hydrating. My drink of choice used to be Ginger-ale, but I can't tolerate it so much anymore.
Oh, and music. I love music. All the time, anytime. Even when my head is crushing me. I find music can just take me anywhere, and especially away from the pain. I love DMB, Michael Buble`, Bocelli; music is a wonderful way to escape. If you can tolerate it that is.
Wishing away your pain
Friday, April 04, 2008
Please Email Your Senator Today!
Dear AHDA Advocate :
Our efforts last month to urge members of the US House of Representatives to support increases in NIH funding for research on headache disorders were highly successful. Twelve Representatives signed the Obey/Walsh letter. This is an outstanding result for the first mobilization of our numbers, and we are optimistic that it will be enough to have our message appended to the House appropriations bill.
It is now time to contact your US Senators for the same purpose. Unfortunately our window of opportunity is only narrowly open. The letter with Senators' signatures must be submitted by today, April 4th.
Please take just 5 minutes RIGHT NOW to go directly to http://capwiz.com/headacheadvocacy/utr/1/BFKQIHDGXV/HQOWIHDHGJ/1872964691 and send your message to your two US Senators
Please forward this email right away to anyone else concerned about the inadequate state of care for patients with headache disorders.
Only with increased research will new effective treatments for headache disorders become available. And only with your help will such research activities increase to levels appropriate to the huge scale of this problem. The larger our voice, the greater will be our impact.
Thanks again for your efforts.
Robert Shapiro, MD,
PhDWilliam Young, MD,
Teri Robert, PhD
Brad Klein, MD, MBA
I came across this Meme here at thesassylime, I also added a few features of my own. The rules are simple (I was able to follow) and almost addicting.
Rules: You'll need two open windows
1. Go too http://www.blogger.com/www.photobucket.com (don't sign in)
2 Type in your answer to the question in the "search" box
3. Use ONLY the first page
4. copy HTML and paste for the answer
10. What do I do for fun???
I actually do stuff like this; I hide on my loving family members when they get home, or out of the shower, and scare the living daylights out of them. It's loads of fun!!!! Especially for Frank, the one with the pacemaker. (tee - hee) Boy does he scare easy.
11. What kind of car do I drive? get ready to get your jealousy on....
oh yeah, the mom car. and, shocker, it's red. I do NOT have this model, however. Mine is 2 years older; no dvd player; but I do enjoy the stow-and-go
children seating. It has come in very handy. Nicholas calls it, "the basement," but seriously, I don't know why he calls it that.
12. The car you'd LIKE to drive?? (keep dreaming, Deb)
in all seriousness; we WILL find one at the right price, (used), and the kids WILL learn to sit next to each other. Or walk. That's easy. What. A. Beautiful car.
14. One word to describe yourself?
this was actually the hardest to come up with. It's not easy to come up with a positive for yourself. And though I don't agree with some of the wording, I believe it explains me for the most part. (I do chicken out on certain things; and sometimes staying home with my family watching tv IS more enjoyable than hanging with friends). That's just me.
There you have it. And if you noticed, I tried to change up the look a little here. I'm still working on it. Yes, the picture is quite large, but, my Marisa took it last summer in the garden and I thought it had a Spring-like look to it.
Wishing you a pain-free day