Tuesday, January 31, 2006

Nerve Block Surgery

I received the phone call today, FINALLY! My surgery will be on February 13th. The scheduler couldn't answer any of my questions and said that she'd send a packet of information that would cover "everything". Hmm. I think it's so odd that doctors think it's ok to just send you some brochures about the procedure they're going to do and then say, Come in and let's cut you open and see what we see. lol Of course, this won't be that kind of surgery, I don't think. But, then again, I guess I'll find out for sure when thie packet of information arrives for me. Hmm.

I haven't written this week, because, for one thing, I'm back to being a bit sleepy from upping my dose of duragesic, and the nauseau roller coaster ride is back, too. Fun, fun, does it never end? However, I'm not as sleepy as I was before, so I'm hoping that it will just wear off. Another reason is that I'm working on a special project that is taking up quite alot of the time that I am awake. lol I will soon reveal what that's about to you, so hang in there with me. I'll get back into a rhythm of writing my blog again. I'm determined not to go without writing as long as I did the first time I was put on duragesic. I'll be back, soon.

Meanwhile, dig around on this site and see if there are some other posts that I've written that might help you out. Or, just be nosey and check out where my head was at when I first started this blog. Do you think I've made any progress from then? Am I in any better shape spiritually, maturity-wise or healthwise from that time? What's your opinion, I'd like to know?

Monday, January 23, 2006

Today's Doc Appointment

I was starting to lose my sense of humor, there, is why I wrote those past two off topic posts. I've been having such a painful go of it since Christmas. I swear, I have to pay over and over and over again for having just a little bit of fun. What's up with that? It's like I'm doing constant penance. What is it called that those Holy Men in India do, when they like roll for hundreds of miles to get to some holy monument, or pierce themselves through with hooks and spears and such? That's how I feel, only not so holy and it's not self-inflicted, because God knows that if there was anything I could possibly do to get rid of this pain, I would.

So, I've been dealing with the usual migraines for the past few weeks, but on top of that, I've also been dealing with about 3-5 cluster headaches on top of that. That kind of pain goes off the richter scales. I can't even label it with a number, so on my diary, well, I just haven't been keeping it other than to put down when I dutifully change my patch. I have to write it down, because I lose track of time so easily and that helps me keep track so I don't put on another one too early or wait too long to change it.

Normally, when I get cluster headaches, I'd be banging my head with any hard object I could find, preferably a cement floor, cement wall or the phone. Well, our phone is brand new, so that's out, because it cost a pretty penny. Then, there's our walls. Well, I think if I banged my head against the wall, it would go right through, and then we'd just have to fix a big, ugly hole in the wall, which in the meanwhile, would let in a nasty draft. Hmmm. On second thought, I probably should do that. I'd catch my death of hypothermia and thereby end this living hell. Anyway, the last option isn't possible, because it's all dirt and wood around here. No sidewalks or patios. Don't even have a fireplace, for that matter! So, that's out, too.

The good thing is that the drugs do take the edge off, maybe because they help alot with the migraines, so then "all" I'm dealing with is the clusterhead. Yeah. That's all. The fact is, though, that the meds only do so much and I really need something better. I told the doctor today that it's painful to make any kind of effort like getting up or sitting down, walking, turning my head, bending over, turning over in bed, etc. The pain increases exponentially if I walk to the bathroom, versus just sitting perfectly still all day long. No kidding! It's ridiculous.

The doc increased my duragesic dosage today and we're going to try out 100mg rather than 75 and see how I tolerate it. It made me extremely tired the last time and I was sleeping my life away, back then, but I think the Adderall will help with that. Then he asked if we've heard from some doctor he's contacted about getting a surgery! Holy shit, no we haven't heard from Dr. B! Sure would be nice if this surgery is actually going to help me out. At this point, I have no faith left in any form of treatment or anyone for that matter. I just always pray, "God, Please let this med do what it's supposed to do and don't let it kill me or screw me up any worse than I already am". That's my prayer when I take my medicine. I probably should pray that over my food, too, but it might offend my husband, The Chef, so I won't. lol

Oh, yes, so back to this surgery. I can't remember what he called it, but basically this guy's going to burn the nerves in the base of my head and top of my neck where the pain starts, I think. So, the idea is that when the nerves are burned, the pain will go away. He said maybe for a year to a year and a half. I don't even remember what it's like to be completely pain free. That seems like a long time ago. Anyway, the surgery may or may not work. We won't know until we do it. But, it works for lots of people. Sometimes it just reduces the pain and then the medications do the rest. Sometimes it completely alleviates the pain. Just depends on the patient, I guess. Well, actually, my guess would be that it depends on how good the doc's aim is.

Then, I talked to him about the dilaudid that I can take. I asked him if I should be tapering it off every time I take it and he said I didn't have to, because I won't go through withdrawals because I have the duragesic patch. That's good, because I'd rather not take it unless it's absolutely necessary. I'm really worried that I'll grow tolerant of it and then I'm really going to be stuck up a creek without a paddle! I'm allergic to morphine, codeine and demoral. I'm not sure how many more narcotic painkillers are available once I can tolerate dilaudid. That's a big reason I always wait until it's almost too late to take it. That and I must be a li'l sadomasochistic or something. Not!

Part of the problem recently is that I was taking it so much more than usual, every single day, a few times a day, that I was scared that I'd be addicted to it. Then, my daughter complained that I was really cranky with her, so I felt horribly guilty about that. So, I stopped taking it at all last week. Well, I didn't miss it a bit, so I'm not addicted to it. I don't think about it, except when my pain's really bad and sometimes, that's how I know my pain level is getting really bad, because I start thinking about, "Maybe it's time to take a dilaudid?". But, the clusters did slow down last week and I haven't had one in three days, so that's really good. Now, I'm just dealing with high pain levels on my migraines, about an average of 7-8 right now with meds. I took some today so that I could make it to my appointment without killing my hubby, myself, or some innocent passerby out of sheer frustration and agony.

All in all, I think it was a good appointment. I really like this Dr. R. He listens and asks me what I want. I always defer, politely, and say, "Well, I'd just like to know what you suggest." Of course, when I say that, I really mean that I want to know what he thinks and know that he understands where I'm coming from and then if I disagree I'll let him know. lol He's a good partner. He is very wise and sensitive and I think that he really tries to understand. The best thing about it, though, is that I always leave his office, still feeling like a human being. He's never made me beg for help; he doesn't look down on me like I'm a druggie out for a good time, (ha! I could think of alot better ways to have fun!); and he treats me like he's my partner, ready and willing to assist me in reaching a goal of adding some quality, any quality, to my life. I think that's how it should be, don't you?

Sunday, January 22, 2006

Fug Ugg-ly

At some point, you're going to probably visit your foot doctor, or, if you have Reynauds disease, like me, then even your regular doctor, or possibly your very own spouse, (after being out on the town with you for several hours and having to practically carry you up the stairs to the house, and, btw, I thought guys were supposed to enjoy doing that? Where did all the real men go? But, I digress, back to what I was saying), one of those people will most likely recommend to you to buy a pair of Ugg boots or slippers. This is what you say to them, "Ugh! Fug you!" Do NOT listen to them.

My doctor recently recommended them to me and I asked him if he was trying to fUg up my life on purpose, because it's fUgged up enough as it is. I said, Your bill doesn't make me comfortable either, does that mean that I shouldn't pay it? The day you turn down my money, is the day I will buy a pair of Uggs. Hasn't happened and most likely never will. See? That's how much he believed in what he was saying. I only hope women are not taking advice from a man who wears a tie with hunters aiming rifles at mallard ducks printed on it. Oy! Hep meh Jeezus!

I do not care if they make me sprout wings and fly, there is a line that a girl has just got to draw on how much fugliness she can take in her life. My life is fugged up as it is without fugging going out and fugging it up even more by buying a pair of Uggs for my fugly feet. No more fugliness for me. The line has been drawn and I put a little sign next to it saying, "DO NOT CROSS."

I don't care how many celebrities like to fug it up, those boots are not "cute" or "hip" or "with it" or "down" or anything but fug Ug-ly! And, whatever you think they go with, they don't! So just get it right out yo' mind, woman! Just because Paris, Ashley or Mary-Kate are doing it, doesn't make it fashionable. After all, they don't have to pay for their clothes. But, if I'm shelling out $100 for a pair of shoes they better look damn good, make my calf look irresistably sexy, be in a color I like, have a pretty name like Blahnik or Claiborne or Amalfi on them and they'd better damn well inspire the envy of every woman I meet. Am I right, Girls?! They better say something about me and that something had better be, "Damn, Girl, you got it goin' OHN!" The only thing that Uggs say about you is, "Girl, you look to' up! What'd you go on and do wit' yo' sad se'f last night, Woman?!" It says you are trailer trash with a capital I-DON'T-CARE-ABOUT-MYSELF!

I'm sure that if I still lived with my mother and I walked within 10 feet of the front door in a pair of Uggs my Mama would tell me, "Girl, you better just turn yourself right back around and march straight into that room and take those things off your feet! No chil' of mine is taking one step out this house lookin' like THAT!" Grumble, grumble, "lookin' like a red-headed-step-chil'", grumble, grumble, and then loudly, "What were you thinkin'? Someone's gonna call Chil' Protective Services down on me if you go out lookin' like that. They're gonna think I can't provide for my own chil'ren!" Then, threateningly, "Girl, don't you take one more step toward that door or it will be the last step you ever take!" Then would come the praying, "Lord, would you please knock some sense into this girl, cuz if you don't I sure as heck am gonna hafta!" and the trevailing, "Lord, where did I go wrong with this chil'? I triiiied, Lord, I triiied." No, sirree. My Mama would sooner see me dead than leave the house without my makeup on, without my hair done, without nylons (shh! She doesn't know, so don't tell! I just haven't had the heart to tell her that nylons are O-U-T-Out, too), and with a pair of uggly shoes on my feet. I swear that all some of these celebrities need is to live with their mothers again. You can't tell me that their moms aren't sitting at home, seeing their beautiful daughter's fugging it up all over the pages of the fashion magazines, and they're not entering into the prayin' and trevailin' at home.

What?! *gasp* Oh, eeeuw, you already own a pair? Well, here's my advice, run, do not walk, run to your nearest incinerator and burn the damn things. That's right, I said burn them, Girlfriend. They should not even go on the feet of the poor and homeless. That will only perpetuate this fuggly fad to imperpetuity and, really, what we want is for this fad to end as soon as possible. (And, btw, is it just me, or is it truly bizarre that all these vegetarian-vegan-PETA-Activist,-animal-loving-holier-than-thou-because-I-am-richer-more-popular-and-more-beautiful- than-thou celebs, like Pamela Anderson and Cameron Diaz, et al, are wearing suede boots?)

They're Ugly! Say it, Girl! C'mon, they are ugly. Look at them, sittin' there on the floor of your closet taking up the space that two adorable pairs of Manolo Blahnik's could fit into. Those big-nasty-sweaty-clunky-chunky, makes-your-ankles-look-thicker-than-your-hips, makes-your-thighs-look-bigger-than-their-size looking thangs. They look like they belong on the big, clunky foot of a bear, not the dainty, nicely pedicured piddies of a lady. Now, don't say I never did nuttin' for ya, because that right there, is pure gold, and it's going to save you from lookin' nasty downtown and let me ask you, aren't there enough ratty-lookin' women runnin' around on the streets without us having to add to all the fugliness? Um-hum. More importantly, do we really need to have our lives fugged up anymore than they already are? I, for one, do not need to have more competition for my man's attention than I've already got in this world. Every time I add some fuggliness to my life is one less glance he makes at my junk, imho.

Let's just once more compare, shall we? On the left, we have a pair of Ugg clogs, or, as they call them, Cluggettes, (how drole), and on the right, Manolo Blahnik. Is it really a difficult choice to make, even before you've had your double-espresso-cocoa-moco-choco-latte?

<- Ick!

Ahhh! ->

<- gag


Is Blahnik a li'l too rich for your blood? Sadly, it's a li'l too rich for mine, too, right now, so let's look at a nice pair of shoes at a more comparable price to the Cluggettes, which market for $70.

Let's take the Matisse mule, retails for $55 at Macy's, on the left:


Or, the adorable, Ginger Goff mule, on the right, also at Macy's, only $69!

Two snaps! You go, Girls!

Of course, if you're like me, and totally broke, you go to Pay Less and buy yourself these adorable Jeri Slings, retails $18, on the left:

Or the cute, Lulu pumps, right, for $22, (such a deal, but look at that heel! woo-wee!) Can't you just see yourself greeting hubby, (ice pack in hand), in a French-maid costume and these cute kicks? lmao!

**Diva Tip: Rule of thumb, if you're not Dutch, clogs don't belong in your home, let alone on your feet, except as plantars. They look really cute in the garden with pansies or violets growing out of them.

So, that's our Fuggly lesson for the day. Your homework is to go out there and un-fugify your life by getting rid of the fuggly on the floor of your closets.

*sighs* Says to self, "Now, I've really done my bit to uplift the human race for the day." I truly deserve those Matisses, don't you think? Hmmm. Now, where was that site...?

(This entry inspired by those Divine Diva Fashionistas over at Go Fug Yourself! I can only hope that I did them proud. Tee-hee) So it's off-topic, so sue me!

Thursday, January 19, 2006

Friday Wish List

Ok, I'm having my weekly Girly moment. lol They used to come daily, but now it's weekly. I'll take whatever I can get these days.

I want a shoe wall. And, I want his and hers closets. I'm tired of having to pull all my pwetties out of the boxes they're packed in, to see if they fit again. I want my own closet, and by closet, I mean, bedroom, to hang my clothes in so I can walk in and say "chello" to Liz, Amalfi and Tommy-babeh. I don't wear my "nice" clothes, which in the city would be my everyday clothes, right now, because the dirt up here is red and I don't want it to stain my expensive duds. So, they sit all lonely, sad and wrinkled in their boxes, waiting the day when we exodus this freak pad and journey to our next destination, which had better be a freaking city! lol Oh, right, I can't forget hubby's Hugo Boss sportswear (translate suits), which he almost never wears unless I force him to go to a "function" with me, where he has to dress up. So, he'll need a 4'x4' space for his collection of clothes that he never wears. I'm actually surprised he lets me force him to keep them, 'cuz he hates going to parties and anything social gives him the willies. How did I marry such a shy guy? What up wit dat?! He could probably live with a 2'x2' closet, but out of reverence for the Boss... I guess he could put his shoes in the extra space, right?

Ok, have you ever seen that show on Tool Time, (Tim Allen's old show from the 90's)? Well, if you're a fan, you'll know what I'm talking about. When I saw that dufus build his wife a motorized closet where her shoes marched out to the tune of Toy Soldiers, (I think, correct me if I'm wrong), I just about dropped to my knees in worshipful prayer, tears streaming down my cheeks, begging God to bless this po' chile' wit a shoe closet like that. Just think how happy my Amalfi pumps would be in there? And they could sit down the road from Liz, Marc, Mike (Kors, of course, duh!), and Alfani and say, "chello!" , whenever they wanted to. Oh, yeah!

So, I want to know, where's my shoe wall?! Where's my motorized, automated, talking closet?! Btw, if I had a talking closet, sorry, but I would not want Tim Allen's voice talking to me. Let Hugh Lorie, Pierce Brosnan, Antonio Banderas or Maurice Benard, say, "Good Morning, Beautiful, and what would you like to slip into?", to me. Oh, yeah. How could any woman have a bad day when they hear those sexy voices talking to her first thing in the mornin'? Oh, Lordy! Mmm-Mm. I'd know I'd just died and gone to heaven if I woke up one morning to see my big-ass closet-bedroom with motorized shoe wall/closet, with all my outfits seperated by color and then designer, and my shoes NOT rubbing up against one another, but politely standing apart, yet next to each other like good little soldiers, all in their perfectly shined and bling-elated glory. (And that's probably just when I'll see it, too: right before or right after I die, with my luck).

Ok, snobby, gimme moment of the week is over.


Ok, first of all, I don't know why, but the word Caregiver kind of bugs me. I mean, it's true that my husband gives good care, but theres so much more than just caring that he does for me, that that word kind of wimpifies who he is. Then, there's also the fact that it implies that I can't care for myself. Now, in alot of ways that's true, but it's not like I need spongebaths or to be handfed, so until I'm in a nursing home and unable to do any of those things for myself, I'm not going to like that term. However, it's the common term that people use to describe people who give assistance to people who need help and there is a tone of respect that you take when you refer to a Caregiver, so I guess that's a good thing, because most certainly Caregivers do deserve your respect.

I thought since I bitch and moan so much about how much pain I'm in all the time, (lately I'm averaging a 6-7 on the pain scale, yuk!), I should probably spend a little time talking about what you could do if you have a spouse or loved one who suffers from migraines to help her.

When I'm in an accute phase of migraine, where my pain level shoots way up there, my husband will act like my go-fer. I hate asking him, (or anyone, for that matter), to do stuff for me. I've always been really independent and it bugs me that I have to depend on him to help me out, but that's the fact of the matter. I do have to depend on him. So, if I need my meds and it hurts just way too much to even move, he'll bring me my pills. He brings me an ice pack, turns off lights, fields kiddie questions from our daughter, brings me drinks, writes down the times I take my meds and my pain level on my diary, so we won't forget and basically takes charge of making sure I don't take more too soon. He even brings me a plastic bowl to barf in if I'm really nauseaus. If I need to go to the hospital, he doesn't question my decision, he doesn't huff and puff about it, he just helps me get ready to go and we go.

My disease has a major impact on Hubby's life and time. We used to enjoy going out to dinner occasionally, going to the movies, going for long drives, and going on family outtings. These are all the fun things that he misses out on, too, because I'm not mobile that way anymore. Heck, we used to even find time to have sex, but, because my migraines are effort-induced, (I forget the technical name of it, but that's what it means), we don't get to do that anymore, either. I'm pretty sure that neither of us ever thought that our marriage would be less than equal, but it is. As a feminist, that really irks me, but it's also my reality, so I have to deal with it. The truth is that all the work falls on his shoulders and, when I'm dopey on drugs, all the decisions also fall on him. That's alot for a guy to have to handle on his own. I'm sure that he never expected to have to take care of two babies in life, my daughter and me, but he does.

To his credit, he doesn't make me feel like it's all my fault this happened to us and he hasn't left me, yet. Though, if he ever did want to, I'd totally understand.

So, if you want to know how you can best support and assist someone with migraines, just ask the migrainer what he/she needs from you. Then, if she says, just leave me alone, don't be offended. She's telling you that the best thing you could do is turn off the lights and let her be in complete silence for awhile. When she reemerges, then that's when you can give her a big hug and welcome her back to the land of the living. If she tells you that you could do some things to make her more comfortable, then do those things QUIETLY and don't require her to say alot. It hurts to talk when you have migraines. Hell, it hurts to think! But, I have to tell you that, no matter how helpless you feel by not doing anything, if that's what she wants, then do it. She'll be eternally grateful for your understanding afterward and she'll show it. Most of all, be understanding if a migraneur has to cancel her date with you at the last moment. We don't schedule the pain, it unfortunately comes right when we least expect it. One of the big bummers about migraine is that it seems to come right when you're about to have fun, or while you're having fun. It's a fun-thief! So, if your friend/spouse starts migraining while you're having the time of your life at a party, drop everything and take her home and don't give her static and tell her she does it on purpose, because that just makes you look like a real asshole. One thing that most of the migraneurs mentioned is that they like to be checked on from time to time. One woman said that her thoughtful husband installed a wireless doorbell between their bedroom and the other end of the house, so that he'll know if she needs anything, because she likes to be left alone in a dark room. I thought that was so sweet.

I don't like to be left alone for that very reason. If I'm out of sight, I also tend to be out of mind, and I'd never get the help I need to get more meds, a drink, or be led blindly to the bathroom. That doorbell idea sounds really good to me. So, hail to the Chief, he's the Chief and I shall hail him. My husband is truly a qualified helper, which seems to be the definition of a spouse in the bible. The bible calls us an "help meet for...". There's a big difference between help-mate, which is how most people read that scripture, and someone who's qualified to help you out when you're in big trouble in my book. It's like the difference between having a pal who's clueless with you when you're bleeding to death and having an EMT, who knows just exactly what to do to handle the situation. It takes skill and brains.

What do you do for your migraining loved one? What do you like to have done for you when you're having a migraine? Please, leave a comment and let me know about your "caregiver" or what you'd want him to do if you had one.

Friday, January 13, 2006

Escaping Hell

I found these "Get Out of Hell Free" cards and totally cracked up. I need like 365 of these. Do you think if I had one for each day of the year, I could escape this hell I'm in? lol Think it would work? Hmm. Check them out.

Plan B

I am one of those rare people who actually does make and keep their new year's resolutions. Quaint, I know, but I've always been a goal-oriented person, so it actually fits very nicely within my A-type-overachiever-personality-bordering-on-neurotic.

The key to keeping your resolutions, I've found, is to make them reasonable and attainable. Once you do that, then you'll have that sense of purpose throughout the year and a sense of pride as you complete each goal, which makes you want to do it again the next year. Another key is to reward yourself for attaining your goal. The final key is to set a deadline for each goal.

Over the past year, I've constantly blogged about finding a way, or ways to accept my disease. But, I didn't want to only accept it, but learn to embrace it, which is even more difficult. As a matter of fact, that's why I started this blog was to figure out how to embrace the enemy. Looking back over my posts and reflecting on my life in the past year, I feel that I have finally come to the point of accepting that my situation likely will not ever change.

I know that some of you are sitting there thinking, "So you're just going to give up?", " That's it?", "Why are you being so negative?" and other such thoughts are going through your mind. This couldn't be further from the truth. I have to face reality, though. I'm not being negative or giving up all hope of finding an effective treatment. I'm simply living in the present. Sure, things could change in the future and I could inherit millions from a rich aunt whom I've never met, before; or I could be miraculously and spontaneously healed. (Wouldn't that be lovely? lol ) The cold, harsh reality, though, is that that most likely will not ever happen to me. If I keep living in the past or in the future, my today will never happen.

So, I think that one of the steps toward being able to embrace this disease is to make a plan B. My own contingency plan, only , instead of starting it with "If *blank* should happen, then this is what I will do...", I will start it out with, "This is where I'm at right now, so this is what I can do according to my present reality..."

I thought I'd enlist your help. I need to make a short list of about 5 goals that I can reasonably accomplish this year. What would you suggest for my goals? What can I do this year, considering what my current lifestyle (well, you should probably take the "style" out of that, since I really have no style right now, lol), can support and enable me to do? Please, post your ideas here. Post as much as you like and as often as you like. I've been drawing a blank about what I am able to do, but you'd be more objective and would be able to come up with things that I'd probably never even think about. Here is a category suggestion, but I don't want you to limit your opinions to just this, ok? Find a simple, legal way to make money from my desktop at home.

Thanks for your help, everyone. I appreciate it. Once I decide what would work, I'll publish the results and will also publish the suggestions. That'll be fun.

Wednesday, January 11, 2006

Awakening to the Present

I was reading the December 21st entry in Colin's blog and he wrote, "You don’t get to choose what happens to you, but you do get to choose how to respond to it." I agree. That's what I've been trying to figure out this past year, in a nutshell.

I really struggle sometimes with the fact that I'm NOT going to die from this disease, yet it still has stolen my life. There is a real crisis of identity when that happens. I struggle with jealousy, especially when I'm in alot of pain without relief, like I've been the past couple of weeks, because there are people with terminal diseases who can still DO things; and, here I am, able bodied in every way, except one, and imprisoned by pain. So, I guess I have my tantrum, my pity party, and then I get over it and move on, until the next time.

I admire Colin's decision to not turn this into a battle. He's very right. It's not a battle or even a war anymore. Alot of people want to "fight" their disease and not "give up". Well, that's all well and good if there's a possibility of winning, like with cancer. With my disease, like Colin's (ALS), there isn't. The only possibility is to try to diffuse it's power over my life as much as possible. Really, it take's wisdom to know when to give up and when to keep fighting.

I've been working on embracing my enemy over this past year and what that means. The Tibetan-bhuddist philosphy is that you should embrace your enemy, because by holding him close, he can't point his gun at you and he can't kill you. My enemy, certainly, without a doubt, is migraine. Obviously, dealing with migraine is going to be different than dealing with a person. There isn't any reciprocity, there. Therefore, I am the one who must change. If the wall won't move, and there's no way around, over or under it, then I have to change my strategy. Until now, I've been looking at my migraines as obstacles to overcome or find a way around. That's exhausting, for one thing, and for another it's an excercise in futility. It's the wrong way to think about it. They're actually more like a wall that stretches out for infinity in every direction. When you see it that way, you realize how pointless it is to struggle, fight, and rail against the inevitable.

So, how do I embrace it, learn from it, accept it's reality in my life, when my life was just beginning to get good? I was just starting to succeed in business. I was just starting to really enjoy life as a wife and mother, able to relax into that role, with a happy little family, something I've always wanted. I was just starting to get involved with ministering at church, (don't laugh). I was just starting to get involved with the community. I was just starting to figure out who I was and be comfortable with it. I was just starting to bloom, basically. Things were just starting to fall into place for me. (Not that things were perfect, things never are and I had my fair share of angst and struggles just like anyone else. Just wanted to clarify that, lest you think I'd lost my mind). I used to wonder if it would have been easier on me if this had come toward the end of my life, or perhaps when I was in my late 50's, after I'd had the chance to accomplish something. Then, I'd be able to look back and say, "Yeah, I've got this disease and it's a real bitch, but when I was young I... (fill in the blank with major accomplishments)". But, disease is never that convenient and so, now, I have to adjust, like Colin, to my new life. So, this year, I plan on coming up with a plan B. That's something you don't think about very much when you're young and fairly healthy. lol (More on that, tomorrow.)

Once again, I'll say that acceptance is one of the keys to having inner peace. Because I've come to the point where I accept that this is how my life will be for the rest of my life, I'm now asking, "Now what do I do?" That's why I want to come up with a plan B. It's really weird to realize that at 33, I have to come up with a whole new mental image of what my life is going to be like. We all have a mental picture of our ideal lives, our ideal selves and then we make our plans and goals according to attaining as close a life as we can to that mental picture that we have. There's peace in that, too, though, because I'm not constantly waiting for things to change or get better. That's what the wisdom of acceptance, surrender and "giving up" is all about. I have to let go of my past, my preconceived notions of what my life was going to be like, other people's ideas of what my life "should" be like, in order to embrace the reality of the present.

Tuesday, January 10, 2006

Year in Review, Cont'd, or So, Did I Learn Anything?

If I had to sum up this past year, I’d have to say that I feel like I’ve come to accept my “new” life. It’s a very tenuous treaty at this point, because I’m sure that I’m not done erupting and fuming about it, but I am grounded in the realization that I will probably never know life without pain, again. Though I have learned to accept my enemy, I'm not sure that I've learned, yet, to embrace it. I don't know if that will ever happen, but certainly it could not have happened in only a year. That is something that takes a lifetime to practice. What I do know is that acceptance is a big key to finding peace, true inner peace. A year ago, I didn't think I could do even that.

Here’s the rest of my past year in review:

THE Appointment, this month was pretty lean, with only a few posts as I tried to adjust to a new treatment regimen, now that I finally got insurance and was able to see a pain management specialist. Hmm. Doesn’t seem like it was that long ago.

When Will I Learn?, talked about how my dreams seem to correlate strongly with my real life nightmare, Migraines. This was also a pretty lean month. Still trying to get used to the meds. As I remember, I was having a god-awful time of trying to just stay awake, until the doc prescribed a med to counteract the sedating side effects of the meds and I was dealing with incredible nausea. I lost about 10 lbs. purely from worshipping the porcelain god. It's effective, but not the healthiest way to lose weight.

Respecting Yourself--Another Step Toward Acceptance, back to embracing the enemy again, and learning to accept even the things we wish we could change about ourselves in order to respect our own selves.

Migraneurs Bill of Rights, This is just plain important for us to remember and to carry with us. We deserve to be treated with dignity by ourselves and others. This is empowering.
A Visit From the Migraine Fairy, How and when to go to the ER for help; how to make it a better experience than you’ve had in the past.

So, how'd I do? Am I too "last season" now? Should I hang the hat on the rack? or Is there something that you would've liked to have seen me post about, that I didn't? What do you think about my blog? Do you have any ideas on how I can improve it? Do you have a blog, relevant to chronic pain or migraines that you'd like me to link to, that is not already in my links list? If so, please, post your comments or ideas and let me know.

Finally, I just want to thank everyone who's read my blog this past year. You've gotten me through another year of hell.

Monday, January 09, 2006

Year in Review

I started this blog one year and 154 posts ago, on the 7th. What have I been yammering about all year long? I thought it would be interesting to find out, so I looked back over the past year's posts:

The Enemy Within, I think this sums up why I started this blog in the first place. I want to learn how to embrace my enemy in the sense of learning from it and accepting the fact that it’s in my life and will be for the rest of my life.

Anger, talked about learning to deal with negative emotions and give them the validation they deserve. I talked a lot about anger, depression and frustration in February. I was trying to work through those emotions without getting completely swallowed up by them.

Intense Pain
, I think this blog really summed up the month of March for me. It was my birthday month and I didn’t post very much, because I was in such excruciating pain that entire month. I didn’t think it would ever let up, but it did once or twice during the month.

Life Is Beautiful, talked about reincarnating hope from bitterness. Again, working through negative emotions and learning to embrace the enemy. It’s a constant effort, like gardening. You go in and pull out the weeds one day, knowing full well they’ll be back again. But, you go out the next day and do it all over again, hoping that you’ll see something beautiful come out of all the tending.

What's Good for the Goose, From what I can see, I was pretty fed up with all the hypocrisy in the medical field in May, again.
That's Such a Cliché, and getting pretty tired of hearing the pop-psychology, religious mumbo-jumbo that you hear from people who don’t know how uncompassionate and unfeeling they truly sound.
Being Empowered, and I guess this is one way that I found to deal with all those weirdoes. LOL

Loss of Freedom, describes how imprisoned I feel inside my own body, with our financial situation, and with the medical situation I was in, not having insurance, and, thereby, my lack of choice considering my own care, and my limitations. So, I guess I was grieving for all of that loss.

Are You Bored Yet?, I’ve been getting really bored with myself. Spending too much time alone and holed up in a hovel will do that to you, especially during my favorite months, the summer months, when, normally, I’d be out swimming and hiking and enjoying the sunshine.

What is Compassion?, I was pretty fed up with being treated badly and hearing about my other migraneurs friends and how they’re treated by not only the medical community, but their loved ones as well, that I wrote this blog as a primer, in addition to these other ones:
Empathy , self explanatory
Oh, The Things You'll Hear, examples of the kinds of comments we get
Dependency vs. Addiction, it’s good to know the difference before you start to accuse someone of being addicted
The Untouchables, talks about migraines being an invisible disease that no one wants to acknowledge

I'll cover the end of the year, in the next post. Thank you everyone whose encouraged me through the blogging process this past year. You know who you are: you're the ones who read my drivel; who leave comments or email me; and who pray for me. Thank you for getting me through to base camp. I've still got a long way to go.

Sunday, January 08, 2006

I'm F-f-f-freezing

I don't think I've ever explained what Reynaud's Disease is, so, since I'm sitting here, in a room with the heater up to 85 degrees, and the room is at 90, and I'm sitting under 2 electric blankets, an afghan and a wool blanket, wearing two pairs of pajamas and a sweatshirt, thinking about it, I thought I should write about Reynauds.

Ok, so Reynauds Disease is a little different from Reyndauds Phenomenon, so I'll talk about both, but what I have is the Disease. So, what happens is that the reynauds patient is really sensitive to cold. We can, literally, get frostbite from sitting in front of a draft. It affects mostly your extremities: fingers, toes, nose, etc. When they're exposed to cold, the extremities go into spasm from the blood vessels constricting. It's pretty painful, I can tell you, just like frostbite would be. So, your spasming and then the color changes, just as if you were out in the snow for awhile without your gloves on. They go from white to blue to red. Depending on the type of attack and how long it lasts, is how your body reacts. For instance, I tend to get blue and white for long periods of time when I'm having an attack. My fingers stiffen up, as do my toes. The end of my nose starts to prickle or burn. As a matter of fact, it's very possible, if the attacks are bad enough and frequent enough that the patient will actually get ulcers on the skin and that can lead to gangrene, just as if she was suffering from frostbite, because, in essence, that's what it is.

So, I have to stay covered up all the time. Now, since I've been on the duragesic patch, I actually have been warmer than I have in years. That's also why I really loved the climate in Austin, Texas. The combination of heat and moisture really helped. I still had Reyndauds and the attacks, but not as often and not as severe as I've had since I moved back to Northern California.

Women are 3 times more likely to have Reynauds than men. People in colder climates experience it more often than their counterparts in warmer climes, however, I would like to say, imho, that I think that it bothers people who have it more if they live in cold climates, rather than people who have it and live in warm climates. When I lived in TX, I didn't even use the air conditioning on hot days, except if I knew my family was going to be home. Then, I would just put on more clothes and wear sweaters. Another thing that's wonderful is a hot tub. That helps my stiff limbs so much when I'm having an attack. I'd go dip in the hot tub and then jump out and drive back to the apartment and jump into my hot electric-blanketed bed. I was a happy girl. lol

But, tonight, sucks, because my legs are so stiff. I can't get warm. I've taken two hot showers and am under TWO electric blankets, plus all the other blankets, my sweats and jammies, a sweatshirt, etc. and I'm still FREEZING! What the hell kind of insanity is this?

So, is there anything that can be done? Yes, there is. This is something none of my doctors ever told me about and I guess they've known about this medication to treat Reynauds for 10 years. Shame on all my previous doctors! I"ve been diagnosed with this disease for about 10+ years. I've had it probably since I was a teen, becuase when I look back at pictures of my summer vacations, I always am wearing a sweater. My mom used to tell me to take my sweater off when we'd have guests or just when she was hot, because I made her feel hotter! I distinctly remember that. So, I know I've had this a long time. It is really hard on my skin, too. I hate it. The treatment is a blood pressure medication to open up the blood vessels. It's called a vasodilator. Unfortunately for me, my doctor doesn't think it's wise for me to go on that kind of med, because it would make my migraines even worse than they already are. Wah!

Anyway, I said I'd tell you about the phenomenon, too, right? The difference is in what causes the disorder. The disease symptoms can be caused by simply reaching into the fridge or holding your hands under cold water (which I never do. It's just too painful). It can be caused by sitting in a draft, or not paying attention and letting my body get too cold. It can also be caused by stress. I think this attack is a combination of cold and stress. I've been in hell the past two weeks with my migraine attacks. I can't get them to calm down at all. But, it's a little better, today, so of course, I can't just have a nice day and leave it at that, right?

The phenomenon produces the same symptoms, but is caused by an underlying disease like lupus, scleroderma, rheumatoid arthritis, carpal tunnel syndrome, smoking, injuries and certain medications. Reynauds is considered an auto-immune disease, which is why if someone sneezes within ten miles of me, I'll catch bronchitis or at least a bad cold that lingers for two weeks! Oy vey!

Monday, January 02, 2006

Carnival of Compassion #16

Happy New Year, Bloggers, and welcome to the Carnival of Compassion. I have read such wonderful posts by other bloggers who've participated, like TMJ Friends, Diabetes Mine, and Chronic Babe, to name but a few, that I feel privileged to even be in their company. I only hope that I can do this important cause justice.

One of the wonderful things about blogging is that you get a glimpse into people's souls and definitely a window seat on the reality that they live in. It puts some perspective on your own situation, to be sure, but I have to say that more than that it's given me the strength that I've often lacked, to continue facing, head-on, this damned affliction. I began to correspond with a few bloggers after reading their blogs and the friendships and associations that bloomed from that humble beginning has nourished me when I've been starved for compassion. That, to me, is what this carnival is all about. We can
empathize with one another on a level that no one else possibly can. We can learn from each other, gaining insight into our own situations from reading about how someone else handled theirs. We can encourage one another to persevere, because we know exactly what they need to hear at that moment to motivate them and most of all to remind them that they have the right to be treated with dignity. When I'm shown compassion, it reminds me that this world is still full of good things, good people and gives me the reason that I need to continue on for one more day.

Moogle's Thoughts always seems to shine a positive light on her chronic migraine status. She goes through hell, but hangs on to her faith in God to see her through the darkest times. Her blog has encouraged me more times than I can count and I was reminded by her that there are positive aspects to every situation, no matter how dark or hopeless it may seem.

The Daily Headache is a blog that I rely on consistently for updated news on new treatments, medications, breakthroughs and reminders to keep looking for effective treatments to upgrade my quality of life. Her information is always spot-on and well researched, so I've come to really count on her blog to keep me in the know.

I love to read this
Nurse's blog, because it reminds me that there are concerned and compassionate care-givers in the world. I, and many migraneurs like me, just don't get to meet them often enough. But, they are out there. I feel that if you're fortunate enough to find a compassionate physician, thank God daily for it, because they seem to be few and far between when you're a chronic pain patient. I especially enjoyed her Christmas blog, because she has such a wonderful attitude about how and where she spends her time. I don't want to spoil it for you, so that's all I'm going to say about it. Here is a woman who practices presence and has it down to an art form on Christmas.

With the advancement of genetics research, we're learning so much about disease and it's origins.
Migraine is thought to have a strong genetic link. If a family member has had it, then you'll probably get them. My case is different in that mine stem from an accident that I was in a couple years ago. However, I still hope that one day this research will lead scientist to produce a cure and certainly, so far, they've been able to develop better medications for us, than our parents' generation had. The Genetics and Health blog is written by a brilliant
epidemiologist, Hsien-Hsien Lee. It's fascinating, she's a very good writer, and I learn something new from her blog every day.

Long ago in my long-term care nursing days, I had a patient with ALS. I wish that she'd been able to keep a blog. She was a wonderful poet, but couldn't communicate very well at all and I remember how I wanted so much to give her everything that she needed, but I knew that we were falling short so often, simply because the communication wasn't there. I think that's why
Colin's blog has warmed my heart like it does. He writes so honestly about his disease and how it's affecting him, that you can't help but be touched with compassion. And, what amazes me most, is the amount of compassion he displays for his loved ones and people he meets, because he knows that his disease affects their lives very profoundly, too. I wrote once about how we have to be just as present for our loved ones as they are for us, because what touches me, touches my hubby and my little girl as well.

I met my new friend,
Aeryn, through reading her blog. She'd written about how she was having a difficult time getting her test results back from her doc's office. Now, this poor woman has had a huge struggle with Cancer and it seemed like it might be raising it's ugly head again. As you know, this is one of my peeves with the medical community. Here is something that needs to be taken care of ASAP, and here her doc's office was giving her the run around. Well, I don't think we have to put up with that kind of shit, so I told her that. I must say that I was as proud as a mama hen, when she next blogged about getting tough with the staff and she got her results. We have to advocate for ourselves and not get intimidated by the guys who like to show off their pigskins by hanging them on the walls. It's my body and I say what happens to my body. The doctors are simply members of my team to assist me in getting a better quality of life. That's the attitude we should have as patients.

Another blog that I read frequently is Living with ADD. Here's another disorder that doesn't get respected at all. If you have ADD or ADHD, then you know what I'm talking about. I was put on a bi-polar medication for almost two years by a doctor who most likely didn't "believe" in ADD. Puh-leeze. It's not a religion, it's a disorder and there is treatment for it. What I like about this blog and Adult ADD Strengths, another great resource blog, is that they treat this disorder with compassion and respect. Another thing I like is that both blogs play up the strengths of having this disorder. There are alot of really great strengths and leadership qualities that we have, but we need to learn how to channel them and how to compensate for the symptoms of ADD/ADHD.

Last week's host of the Carnival of Compassion was This blogger addresses social issues that affect our world daily. Certainly health issues, and how they are treated by society as a whole, affects each one of us. We need to be reminded often to be compassionate toward one another, but what good are reminders if we do not learn HOW to show compassion?

Compassion is something that we cultivate in our lives daily. We can never have enough of it. We can never show enough of it. It's a continuous cycle. The more you give of it, the more you learn about it. And the more you learn about it, the more of it you have to give. Without love, life is not worth living a day. Think about that. If you didn't think that you mattered to a single being, what point would there be to even getting out of bed in the morning?

So, continue to cultivate compassion by participating in the
Carnival of Compassion. We have so much to learn from each other. Go to Medsim.Net to learn about how Dr. Del got the idea to start the Carnival of Compassion and how you can participate as a blogger. It doesn't cost a thing. But, you'll get so much out of it, just from what you learn from other people. And, please, leave a comment if you've enjoyed this blog, if you'd like to participate in the Carnival, or if you want to tell me to bugger-off, because I'm getting on your nerves.

Next week's Carnival will be hosted by
Bomb in My Belly.