Feelings

I get certain feelings for different things. When a migraine is brewing, I get this funny feeling in my teeth to warn me. When I wake up and my teeth feel gritty and tingly, I know what is coming, and batten down the hatches, so to speak, in preparation of the impending doom that is looming over me. I make sure there is enough ibuprofen in the house, and check to make sure there are enough "comfort" foods to get me through it -- soups and other things that don't require a lot of heavy chewing. If these things are low, I have to get to the store ASAP to stock up before the migraine descends and hits me over the head like an evil anvil.

Even worse than migraines is the dreaded MS attack. I will gladly take a migraine over an MS attack. At least my migraines only last about 3 days and then all is well again. My attacks drag on and on and on, until I'm sure there is no light at the end of this too long tunnel. Right out of the gate my attacks were long: My first attack lasted about 6 weeks with the steroids. For 6 lllllloooooonnnnnnggggg weeks my vision was messed up to the point I felt trapped in a body without a thing to do, I couldn't read, couldn't watch TV, couldn't get on the computer, just had to sit and wait. It was also my first time with the ataxia and I had a hell of a time walking around anywhere. I stumbled and gimped around trying to do the things I normally do. Luckily I couldn't see anyone looking at me trying to figure out what was wrong with me, something that annoys me -- I prefer people just asking me outright instead of keeping their distance like I'm contagious.

When I'm getting attack-y (or attackie, or if you are really into cutesy things, attacki) I get this certain feeling that tells me, "Blindbeard, this is a real attack and there is not a pseudo thing about it." I'm not sure I can really put words to it, but I am going to try (try to hold your applause). The first thing I notice is that I start feeling this depressed, heavy mood wrapping around me and smothering all happy thoughts -- not that I get too many of those (there, I said it for you.) The negative thoughts about myself and this disease kick into overdrive. I start feeling like I'm less than human and a non-entity, someone who is not as worthy as those around me, even though I don't believe that about anyone else regardless of any disability they may have. I'm sure that is just the depression whispering into my crusty ear, and I'm dumb enough to listen.

Next is the fatigue that wipes me out and makes the couch my best friend, which is already my bestest buddy, but we become even closer and whisper our secrets to each other all day long. I only leave the couch to hunt and forage in the kitchen or grab some books and, my new favorite hobby, my highlighter pens to highlight the books until they resemble coloring books instead of the informative tomes they used to be. I nap for a good portion of the day, go to bed early and still sleep as much as ever. It doesn't matter if I take my anti-fatigue meds or not, I'm still just as tired. Trying to move my heavier-than-usual body is a chore and insures my continuing to mold my ass prints into the couch. We are moving mid-month and I hate that I will be no help at all. Even if I try to help, my family won't let me. All I get to do is it put away the little stuff and watch everyone else huff and puff (and try not to blow the house down) moving my crap. I know they are only banning me from helping out of love and concern for me, but it makes me feel worse about this whole having-MS-thing. It makes me feel like a burden on everyone around me and that is a feeling I hate with every fiber of my rotten being.

I'm feeling tried, depressed and like a huge burden, and all those feelings make me unfit for human consumption, so I must go before I disintegrate into the mushy pile of tired, depressed, burden-like crap that I am. What I really want to know is whether anyone else gets a certain feeling when they are getting attack-y, a feeling that makes you KNOW that this is a real attack coming on regardless of what any neurologist says about it.

My Angry Face

*Author's Note: I forgot to mention Trigeminal Neuralgia. How could I forget something so painful? As retaliation for my forgetfulness, the right side of my face hurt all night. I can only account for my negligence by pointing out that Princess was playing Wii Fit in the same room and wanted me to watch her every move, and kept up a running commentary on every thought as it passed through her head.



Unlike Old Yeller, who ain't gonna hurt nobody nohow, I very well may. I was dead tired last night, but it is impossible for me to go to sleep without first running my eyeballs over the printed word -- something me and my sisters all have to do; we think it is because my mom always let us take books to bed with us. It doesn't matter where I find that printed word, I will read the back of a laxative box if I have nothing else. I must read something, even if just a line or two or I won't get to sleep until I do.

Last night, not having anything else to read -- I'm between books right now -- I picked up a book about MS that I got awhile ago and have been reading off and on depending on whether I am in the mood to read any more about MS or not. I feel like I have read every damn book out there about MS, and unless it has some really cutting edge information, or something new to add to the whole library of knowledge already out there, I am not interested. This book caught my interest because it broke down the DMDs, how they are thought to work, and how they came about. So I fell into the trap and bought it. I was enjoying it until I came across a list of different symptoms that are common to MS. This book stated that pain is not usually a problem in MS and not often seen. Are you sh*tting me?! I wanted to throw that book against the wall and the only thing that stopped me is that I was afraid I would hit some of my antique breakables. If I had not been so dead tired, I would have ripped that book in half and shredded it with my teeth. I threw it to the floor, because I could not possibly let it touch my nightstand, and would have put it in my hamster's cage, but I cannot let him nest in such a pile of malarkey. That would be cruelty to animals. I felt like Old Yeller, frothing at the mouth and needing to be restrained from finding the authors of that book and biting their ignorant asses. In fact, whenever I think about it, I get my "angry face" all over again and am certain I am not the best doggone dog in the West. Let me tell you about my pain that is not from my MS because the authors of this book said so:


MS Hug

According to this book, it is only a tight band around the trunk of the body, no more than that. Funny, I am suffering with this MS hug and it is much more than just a "tight band." It is extremely painful and makes my days miserable and my nights restless. I envy anyone who only has a tight band, because mine blew past that stage so fast I never noticed anything other than a painful band around my chest. My muscles clench and make it feel like there is a hot knife being drawn down my body. Rather painful regardless of what any book says.


Optic Neuritis

My left eye hurts more often than not. My first attack took the vision in my left eye for almost 6 weeks, leaving me with diminished vision and loss of visual acuity in both eyes. There is almost always pain around my left eye and I know it has to do with MS because it is only around my left eye. It is not a headache, because it in localized in that one area.


My legs!

According to this book, the only pain one has in limbs is that burning sensation, of which I can't think of the technical term right now, and it is not pain, only a burning sensation. If they had ever had that sensation, they would know how painful it can be. My legs ache and I only have the frozen numbness, not the burning. And when my spasticity is working overtime, the resulting muscle cramps are very painful.


I don't know who these authors are, and I don't know who would want to be their patient -- one is a neurologist -- because I can't imagine having my pain swept under the rug and being told that it is not really there; even my neurologist accepts that my pain is real, regardless of whether it's the way it is "usually presented." I would bounce their book off their thick skulls and turn into Old Yeller right there.

My 2 Cents

*Author's Note: Diane, I'm sorry about misspelling your name. I should have looked it up before I wrote it, and I have no excuse for it except my profound laziness. I hope you have my good luck to have someone call you a lesbian and I would love to be a fly on the wall and hear your response. My money is on you having a much more interesting volley of words than I have had and I hope you blog about it if you are ever so lucky.


Reading Braincheese's recent post about bullies, I found I had so much to say about it, I couldn't possibly say it all in her comments section, which she should be grateful for because it is a lot. To All You Freaks And Weirdo's... in case you missed it. (I find it hard to believe anyone who reads my blog has not read hers because she is a much better and much more humorous blogger than myself.)

How ridiculous is it to spread rumors about a blogger? You might as well spread rumors about the contents of your bloomers drawer because you probably have no idea what all is in there either. I know I don't know for sure what is lurking in those back corners and I'm too scared to dig around and find out. Why would anyone give full disclosure about themselves?! It is unwise to give out all that information and I feel stupid even saying it because anyone with 2 brain cells rubbing together knows that! I am jealous that someone finds her so powerful, so influential, and so "dangerous" that they would try and undermine her. If nothing else, that should be flattering, my dear Braincheese. Someone is so intimidated by you, they must try to make others think you are not what you say you are. If I have learned nothing else from reading her blog, I have learned this: She is honest and open about her MS and does not water down her experience with it -- all things I respect.

Nobody tries to spread rumors about me, probably because I am a total dingleberry hopper and not a threat to anyone. When someone leaves a negative comment, it bothers me not at all. I have never been burdened with worrying about what others' think. I don't care what anyone thinks of me and the only time I feel the need to comment on a negative comment is when I am afraid someone else will read it and feel bad about themselves because of it. Like the time I got a comment about how I needed to "get over myself" and get over my anger about having MS. I don't care what you think I need to be doing, but I do care if someone else might read that and think that what they are feeling or how they are dealing with their MS is wrong. Who shat you out and appointed you All Knowing Master Of What People Should Feel And Be Doing, because I would like to hunt them down and beat them with my sizeable collection of MS books. Which is why I loved Braincheese's comment about how you have a choice to leave her blog, click out of it, use your self righteous fingers to tap around and figure out how to find another blog more to your liking -- assuming that you can figure that out and are not a monkey with a pencil in your mouth tapping around trying to find bloggers to annoy.

The worst thing people call me in life/to my face when they are trying to hurt my feelings is (and Ms. Diane J. Stanford, this is for you) a lesbian. Is that seriously supposed to upset me? Because if it is, you are wwwwwaaaaaaaaayyyyyyy off the mark. If that is the worst thing you can think to call me than you are not a worthy adversary and I cannot possibly get into a war-o'-words with such an obviously unarmed person. It would give me an unfair advantage and I try not to be mean to the mentally challenged. Yes, I know I have short hair, and I have no intentions of growing it out in this lifetime, so is that your mark of a lesbian? Is calling someone a lesbian the worst insult you can think of? It bothers me not one whit because I do not find that offensive at all and usually assume (when it comes from a man) that he is only mad because a lesbian would not have a drop of interest in his penis, and that is always offensive to a man.

I could probably go on and on about this, but Princess has some serious diarrhea of the mouth and has now buried me under a mountain of words.

Search Terms

Trying to figure out my analytics -- and failing miserably, my uncomplex brain can't figure out complex things -- I stumbled across a list of search terms that landed people on my blog. Some of them were so funny, I sat out here at 5 am laughing by myself and irritating my roomies who were trying to sleep. (Silly, lazy, lie-a-beds who don't appreciate the beauty of getting up early.) Several of them are just too good to keep to myself:


How do I tell a guy his breath smells like cat sh*t?

How this one directed them to my blog, I do not know. I can only assume it was my blog about the little dog cleaning out the cat boxes and getting some putrid breath from it. I wasn't able to tell him about his bad breath, so I don't have any great advice to offer, except the following:

Her: Would you like some gum or a breath mint?

Him: No thanks. I'm good.

Her: No, really. Would you like some gum or a breath mint?

Him: Is that a hint?

Her: Yes. Either that or go brush your teeth and don't forget the mouthwash either!

I hope she (assuming it was a she) found the information she was looking for and I'm sorry I couldn't help.


Right side of face hurts.

How strange! Mine does too! I have only found relief by consuming large amounts of pills, not letting anything touch that side of my face, and using 2 pillows at night to hold up my head with a big space between where that side of my face would touch. Trigeminal Neuralgia SUCKS and anyone else who suffers from it has my undying sympathy. I wish I had some great advice to offer, but, alas, I don't.


Multiple Sclerosis quotes.

There are some? I had no idea. I would like to meet the person who has been so talented as to come up with a quaint variety of quotes to uplift the MSers spirit and make them want to cross stitch their words onto pillows. Or maybe not. I'm not really one to enjoy such things, they only irritate me.


I never get out of bed.

I do get out of bed, but I have a hard time leaving the couch until it is bed time again. Ritalin has really helped me get back to life and feel alive again, for which I will be eternally grateful to the gods of stimulants. I hope you find something that works for you because MS fatigue is a bitch and underrated by those in "authority" -- bastards!


Copaxone chap stick

I still have some if you really want it. It is only slightly used and comes from a non-pet free home. We don't smoke in the house, so it is smoke free. Why you are searching for Copaxone chap stick is a mystery to me. Is there something so great about it that I should dig it out of the cluttered hall closet and start smearing it all over my lips? Enquiring minds want to know, so please don't keep me in suspense any longer.


Boooooring

Honey, stop searching, you just found the right blog!


Cats sniffing breath.

Wha...?! Does that have anything to do with anything I have ever wrote? Why would a search engine direct that to me? I can't figure any of those questions out, but maybe it is my faulty memory.


How do I know I'm done with puberty?

Not sure I ever really hit it or left it. But good luck finding the right answer. (I know what made them find my site: my blog about Princess being hit with a big ugly puberty stick.)


Multiple Sclerosis I want to die.

Some days, don't we all? They only reason I keep breathing in and out is because of my family. My paternal grandfather committed suicide and it destroyed my family. Some days I want to bow out of this life, but I do not want to leave that terrible legacy behind for my sisters, mother, nieces and nephews. I attempted suicide 3 years ago and had to see the pain written all over my family's face, a memory that haunts and shames me to this day.

Dear Blindbeard

I've been meaning to do this, but life took me away from my blogging pleasures for awhile and decided I needed to eat hospital food for a change. Now that I am back to food that is easily identified, instead of a guessing game, I am more than ready to return to my usual blather. Speaking of food that is not identifiable, Princess was playing Cooking Mama 2 on her DS last night and was scandalized when she had to make a dish with horse meat. She and I just had a long talk about how the foods that we assume are "normal" are not the norm for the rest of the world, and she was horrified that people could eat some of the things they do. As a person who eats too many bugs because she doesn't always check her drinks before she tosses them down her throat, I am not as shocked that people eat differently than us. Before I run away with all this, lets get back to what I really wanted to do here: my beloved Dear Blindbeard column.



Dear Blindbeard,

I have been lurking around your blog since I was diagnosed in April of 08. I truly appreciate seeing someone who has the outlook and slant on life that I do. I am really not much on MS support groups, why would I want to sit around and listens to complete strangers talk about their brains liquefying? I did sign up to do the local MS walk, though. Here lies my question for you: after I was diagnosed I was very angry (now I am just angry) but I had a t-shirt made that says "MS can just suck it" Do you think it is in bad form to wear that to the MS walk? Your thoughts are greatly appreciated.

Thank you,
Brain Mush


Dear Beautiful Brain Mush,

I too hate support groups. Whenever I have to attend a function with a large grouping of MSers, I always come away irritated and convinced that people with MS are either pompous know-it-alls or have no idea what the words "personal hygiene" mean -- which makes me wonder which group I fall into. As a person who showers, brushes her teeth and applies pit juice every day, I have to assume that I am a pompous know-it-all. I am not a pie-in-the-sky person and I suspect that there are many out there who are not either. I would definitely wear such a t-shirt and even have several ideas of my own to wear to this year's walk. For every one that cannot relate to that message, there has to be someone who will, and who would appreciate someone else with the same attitude. Sometimes I think no one wants to say how much they hate having MS because it is not socially acceptable to say such a thing; everyone wants to put on a brave face and show how much, "they have MS it doesn't have them." Some days I know MS has me regardless of all the inspiring catch phrases out there to try and make me think otherwise. When I am barely able to get off the couch and pain has me in it's tight evil grip, MS has me, not the other way around. By all means, please represent those of us who feel the same way and do not apologize for having your own opinion.

Love,
Blindbeard


Dear Blindbeard,

MS Hug? WTF..what a freekin name for something so painful. I have SPMS and was DX'd back in 1997 (I think). Somethings u just wanna forget. I've had this pain for about week, went to the ER, explained to them that YES I have MS as well as RSD. So the idiots see that my left lower leg has a lump (swelling and is hard). OMG I must have an embolism. Idiots. I figured, hey maybe they are right this time, who knows, after they are the ones with the medical degrees. Had all bloodwork, Xrays of lungs, chk'd for UTI, and who knows what else. So now I wait and wait and wait for dr to tell me whats wrong. Well the pain was unbearable and couldn't wait anymore. Told them they were all F'rs and left. They came running after me. "Oh Miss, U need to sign this paper as we will not b responsible if U leave now. Again I say, F U. The other hospital was a hell of a lot better than this one. "Well then why did U not go to that hospital?" Now I am freekin mad and in my usual calm voice I said, "They F'n closed the old hospital and built this 'new state of the art hospital'." Well I came home and they called me at 6 pm. OH U have to come back to emerg STAT and get an injection. WHAT? Well Miss we think u have a blood clot and PE. U need to come in NOW u may die. Again DR have medical degrees so I go back and get 2 injections of blood thinners. The also tell me that I have to come in next morning at 8 am for venous doppler as well as a spiral CT scan of lungs. OK. So what happened U ask? "Well Miss all is well, u have no clots u may go home." But what about this pain? Is this my MS acting up again? "I don't know, go to your family dr." So here I am in pain on the scale of 10 plus. Last year they did the same to me. Same hospital, just opened, I was having speech problems as well as bladder mishaps so I went. Idiots treated me for a stroke. Hubby kept telling them, she needs roids now she's having an MS attack. NOOOOOOOO, we know nothing. We just suffer. Sorry I am so pissed and hurting. Can't sit, can't lay down. Gotta see if I can sprout wings and float around. MS is a bitch.

Thanks,
Anonymous


Dear Beautiful Anonymous,

I enjoyed this letter too much. I laughed the whole way through and all I can say is, I like the way you talk and would like to subscribe to your monthly magazine. I thought about going to the ER when my pain peaked at "10 plus," but knew they would do nothing for me and was worried they would misdiagnosis me and try to admit me -- EEEEEK! That is unacceptable. So I stayed home and ate pills until I could get a hold of my neurologist. Keep rockin' out with your pockets out! (Thought I was going to go somewhere else with that, didn't you?)

Love,
Blindbeard


Dear Blindbeard,

As far as the effing MS Molester Hug, I've not found much that works... tried narcotics, seizure meds, anti-inflammatories... oddly though, it has seemed (and I say this with caution and avoiding your fists) sometimes if I actually CREATE something tighter around the area, for whatever reason, my actual muscles seem to relax some... try at your own risk and don't hate the messenger. :-)

Braincheese


Dear Beautiful Braincheese,

How funny! I found that if I wrap my arms around my chest, it makes it better. I drive, clean, run errands etc, with one arm holding my chest tightly. My mom suggested I go to a medical supply store and get one of those binding things for people who break a rib. I haven't made it there yet -- I keep hoping it will go away -- but think I may go soon and invest in one. Its good to know that it works for someone else. I needed that motivation.

Love,
Blindbeard

Round 2

*Update: We caught Princess' leg in time and after 2 days of high dose IV antibiotics we were declared safe to go home, especially as they know that if anything changes we will race her back in. Her appetite has returned with a vengeance and I told her that they only discharged us because they can't afford to feed her anymore. That and we were getting too noisy -- we were messing around and fighting for space on her bed when I tried to share it with her. I also oiled my hamster's wheel so I actually got almost 7 hours of sleep last night! (I know you were on the edge of your seat wondering if I would ever get around to it, so I wanted to set your mind at ease.)


*Author's Note: I forgot to mention that I will be working on smoking myself retarded again, and I mean that in the PC dictionary term: a total slowing, stunting of my mental processes, not as a derogatory word for anyone. Princess' room is on the 6th floor and they are working on some construction right outside her window with a huge crane, and we love watching them haul their cooler up and down each day. I want to get a case of beer for them to haul up and watch people's reactions to that.


Just as we were celebrating Princess' return to home, her leg started up again yesterday. The cut started weeping again and her leg started to get red and hot. Sugarbowl took her to the E.R. and they admitted her again. This time they are talking about doing exploratory surgery to see if there is a foreign object in her leg that is preventing it from healing. Good thing the lazy arses didn't unpack a darn thing yet, so all Sugarbowl had to do was drag it out of her room and pile it up in the living room, ready to haul it back in and take up residency in their room again (she got the same room). I unpack almost immediately whenever I return home from anywhere that I had to pack to go to. Even if I can only start it before I have to collapse in bed, I hit it first thing in the morning -- after my coffee, of course. Sugarbowl can't afford to lose another week of work because we are too poor, so we will be tag teaming it this time. I will stay with her most of the time and Sugarbowl will come when she can and relieve me when possible. So depending on my boredom levels, which promise to be sky high, I may blog more or less. Sometimes when I get too bored I can't do a thing but think about how bored I am; other times I have to do anything to keep from becoming destructive and destroying everything around me.

I didn't get any sleep last night. I was worried about Princess and had bad dreams all night. I laid in bed for most of the night with my beady, blood-shot eyes wide open, listening to my hamster run on his very squeaky wheel, wondered why I hadn't oiled it yet, and resisting the urge to tell him that his buns and thighs should be perfectly toned by now and he is more than ready for swimsuit season. I tossed and turned and broiled alive. I had to push the little dog off of me before I split my skin like an over-cooked hot dog. I got up to pee about 500 times and mashed pillows over my head to block out the horrible squeaking of his hideous wheel. I had visions of what this house will look like by the time I came back -- making me sweat even more -- and pondered whether I should leave a list of things that need to be done and not left for me to do when I get back. They will never see overflowing trash cans, sinks stacked to the ceiling with dirty dishes, the pets' empty water bowls, mountains of dirty, wet clothes left on the bathroom floor... I shudder to think of it all. They will sit on a pile of garbage, watch TV and never notice all the crap they are sitting on should not be there. Walk over all the clothes on the bathroom floor, forget to put down a towel when they shower, get the whole mess soaking wet and slow down my getting new linoleum down.

I hope Princess gets better soon and that the house doesn't resemble a garbage dump by the time I get back. I don't want to have to explain that we are not taking any more loads of sh*t, so please go to a different dump.

Unfresh

*Update: Princess is home from the hospital! YEA! This house stayed way too clean without everyone going behind me and messing it up. I didn't know what to do with such a clean house, besides enjoy it -- very odd! My stress level has returned to normal, which is good. I smoked myself completely retarded and my MS Hug held me in an even tighter grip while I worried about her.


Sorry for my prolonged silence. Believe it or not (great show!) we have not been having computer/Internet problems. I know, I know, how shocking. I wish it were that. Princess is in the hospital for a cut on her leg that went awry. She scraped both legs in basketball practice about a week before all this hullabaloo, one leg healed up, the other... well, not so much. It kept getting worse and Saturday she spiked a temp of 105, scaring the turds out of us and insuring herself a tepid bath. It took 45 minutes in the tub before her temp came down. Sugarbowl took her to the doctor the next day and they admitted her to the hospital right there. She is on IV antibiotics and has not been responding -- or her leg to be exact -- to them. They are now trying a drug that is not FDA approved for children, only adults, but Sugarbowl decided to do it because something needs to be done. The good thing is that while on this drug, and participating in this study to help get it FDA approved for children too, the costs for administering this drug and her care are covered. She has been in the hospital since Sunday and her earliest release date is Friday, if they see some great improvements, and even then she will probably still need IV antibiotics and home health to do those. It kills me to see her go through all this and I now understand my mom wishing she could take MS from me and go through it all herself. I would take this in a heartbeat if I could; I would take it before giving it to any of my family. But, alas, I can't.

Why the title of this post? So glad you asked! Let me tell you all about it:

*While we have been spending an ungodly amount of time in the hospital, the dogs have been left alone. The little dog apparently doesn't like to be left alone. The first day he got ahold of a decorative couch pillow and ripped all the stuffing out of it, making the living room look like a snow storm struck in just our house, and making me soooo happy to come home to that. I didn't learn my lesson and put him in the kennel the next day when I left, so he decided to move on to bigger things. He ripped off a huge chunk of the linoleum off the bathroom floor, exposing a serious mildew problem under all that hideous 70's flooring. I removed as much of the linoleum that I could without the proper tools for the job, and have been letting it dry so we can put down new linoleum. I hate that musty, unclean, unfresh smell of moldering ugly linoleum that has taken over the bathroom. After seeing all that, I couldn't help but think that that may be helping Princess have a putrid infection in her leg. I hate sub-par housing and am so glad we are moving next month -- after replacing the flooring, of course.

*My dog had a seizure, just before all this happened, that went on for almost 30 minutes. I gave it a chance to quit on it's own, but when it didn't I had to do something I really didn't want to do: I had to administer Valium rectally. I put on cleaning gloves because I didn't have any latex gloves, which I have now invested in for future use, and lifted his tail. I felt so dirty having to do it, but it was a labor of love. We keep track of his seizures to see how long they last, how often he gets them etc. And on our chart of Gussy's Seizures, Princess wrote how long it lasted and that I put "medicine up his butt." Glad we will have that charted for posterity.

That is my update for now, I will keep you informed of how everything goes and if I have to lift my dog's tail again. I really hope not.

Potpourri Of Irritants

I am one big stewing pot of irritation. I am trying to be patient and breathe deep before I attack, but when one is hurting it tends to shorten one's patience. At best I am extremely uncomfortable, at worst I am in an ungodly amount of pain that prevents me from forming coherent thoughts and getting any kind of rest. I couldn't find a place in my bed that had any comfort in it last night, so I tossed and turned and got up way too early to keep my pain company, because it was obviously lonely. I saw my neurologist yesterday and my little sister came with me, which turned out to be a good thing because I needed someone to restrain me. I had to go to the lab first and have the blood suckers suck some more of my blood, because the umpteen billion samples they have recently taken were apparently not enough. I sat in the waiting room so long I wanted to ask the receptionist if they were back there forging needles from a fire, but Sugarbowl wouldn't let me. I had to give another urine sample and have now wiped myself down with so many antibacterial moist towelettes I should be free from any V.D.s for the rest of my life. After all that fun, we had to walk back across town in their heated tubes over the main city streets back to my neurologist's office, where we had to wait for half an hour to get in. While waiting, I helped myself to an array of their magazines that I felt I may want to read someday... or not, but I took them anyway. I didn't even bother to try and hide my filching, just walked out with my arms stuffed full of their crappy magazines. So if anyone is interested in Garden & Guns let me know, I have the latest copy. We finally get to see the holy, sainted face of my neurologist and by then any good humor I had (none) has run off with all the pain meds I had taken earlier like the little whores they are. Sitting is painful because I don't want anything to touch my back, so I sat hunched over in the chair in an examining room trying hard not to tap my fingernails in a blatant show of impatience while Sugarbowl tried to keep me calm:


Blindbeard: What the puck are they doing? Organizing all their patients' charts by the amounts of blood taken? That should make me first in that pile!


Sugarbowl: Knock it off! They're probably really busy!


Blindbeard: Sooooo glad we raced down here to wait 50 years for them to pluck their nose hairs before they can see me!


Sugarbowl: If you don't stop it, I am going to restrain you and stuff a dirty sock in your mouth!


Blindbeard: This is BULLSH*T! I think I just saw the janitor go by and the lights are going off! Is she dictating her reports first then seeing me after?!

Sugarbowl: Be quiet! They might hear you! Don't make me bitch slap you, Bitch!

After plucking her nose hairs and dictating all her reports from the last month, my neurologist finally remembers I'm sitting impatiently in an exam room waiting for her to sail in, and sails in. I tell her all about the painful band around my back and chest, and she makes a nearly fatal error by telling me that what I am referring to as the "MS Hug" is not how it is usually "presented." Feeling myself turning green and on the verge of huge muscles popping out and tearing my clothes into shreds that miraculously still cover my delicates, I tell her, "Oh really? When I looked it up on the Internet, I found a lot of people describing it exactly as I am "presenting" it!" She conceded that I may be right, which I'm sure killed her to have to admit a person living in an MS body might know how it feels to have MS a teeny bit more than someone who got their information out of a text book. She ran me through the whole examination process and poked me with a bunch of toothpick-like things all over my body, which I found extremely annoying and wanted to shove them up her Uranus and ask her if they felt the same on both sides of her rectum walls. She beat me with her rubber hammer to check my reflexes while telling me that it was highly unlikely that I could possibly be having an attack because I'm on "Tay-say-breee." I resisted the urge to grab her rubber hammer and crack her upside the skull, and instead told her that many people DO have attacks on "Tie-sa-breee;" it does not have a reduction rate of 100% and therefore it is possible to have attacks. Again, she admitted that I was right, and I'm sure she had to resist the urge to hit me upside the head with her rubber hammer.

I had an MRI done last night and am awaiting those results. They wanted to do an ultrasound too, but unless they are going to ultrasound my boobs (where the pain is, along with across the middle of my back), which I highly doubt, I am not interested in going that route unless I have to. I have been really thinking about finding a new neurologist, but my current one is in the MS clinic that is supposed to be the best in this area. I need a neuro that takes me seriously and doesn't try to tell me that what I'm feeling is not what I'm feeling. I was feeling bad about ditching her and finding someone new, but that bad feeling is fading quickly as I deal with this pain that she tries to tell me is not what I know it is -- extremely painful and not normal for me. I hate her.

The "MS Hug" Or Girdle

I didn't want to give this post a clever name because I want people out there who are in the same ship o' fools as me to be able to find someone else in the same predicament. Whether my evil plot (camera pans over to me manically laughing and rubbing my hands together)
will work remains to be seen...

The pieces of the puzzle are starting to fall together. I have had this back pain for over a week now and my kidneys are not behind it all (darn it! Should have known it couldn't be as easy as acute renal failure). What started as a pain in my back has slowly, insidiously, and evilly spread around my chest in a painful band that is ironically called "The MS Hug" -- a name that is a cruel attempt to make light of something that is not like any hug I have ever had or ever want to get. It took me a while to figure out that that is what is going on. I've never had this before and I had one heck of a time finding any information about it. I tried to find something about it in the Multiple Sclerosis Owner's Manual (not the official name) that I got from my local MS chapter shortly after diagnosis, but it only glossed over it and didn't go into any detail. In fact, I got the impression that it was just a tight band around the chest with no pain involved -- stupid owner's manual! I hauled out all the books I have about MS, which is too many in case you were wondering, and was able to get some vague answers that lead me in the right direction. I did a search on the Internet and tried all the "official" MS websites and again found glossed over definitions about this damn girdle that won't ease up. But the good news in this dung heap of a symptom, is that I did find good information from others with a way with words and having the same nefarious problem. My fellow MSers, I apologize for not coming to you first. I should have known "The Establishment" wouldn't know f*ck about sh*t when it comes to living in an MS wracked body. Am I coming off as angry and bitter? Good! Because I am! Pain has a way of making one cross and ready to be euthanized.

Anyhoo, on to my problem. I have this tight band around my chest, just under my breasts where my bra should be fastened but I can't wear a bra right now because it hurts too bad. It is an uber pins-and-needles sensation with stabbing pains down into my abdomen and lower back. My back hurts to the touch and even sitting here is killing my back. I have been taking hot showers to try and ease the pain and subsequently draining the hot water tank, much to my roomies pleasure. Heat is not my friend in general, but I am hogging the heating pad in an attempt to calm "The Hug." (My little sister uses the heating pad to keep her red eyed tree frog warm -- or did.) It makes me not want to eat anything because my abdomen feels too tight to put anything into it. I feel like I can't draw a deep breath because it is too constricted and if I try it only sends more shooting pains. It is miserable and underrated because this is a serious pain. The only good thing about it is that I don't feel my trigeminal neuralgia with so much pain in my back and chest. But instead of waking up with a hideous pain in my face, I am kept awake by this "hug" and made all the more irritable by my utter inability to get any rest. I already take an ungodly amount of Neurotin for my TN so I thought that would help all this girdling -- ha ha and HA! I am pacing the floor waiting for the time when my neurologist's office opens to see what can be done to give me some relief and I will not accept any brushing off of this new problem. She doesn't want me coming in there with a battling ram to get something -- ANYTHING -- to ease this pain. If she thought I was an obstinate pain in her behind before, she is going to get a huge surprise when she has to deal with me in pain that is reaching the 10 point on her scale o' pain. I'll keep you posted on whether she lives through this or not.

Love and kisses,
Blindbeard

P.S. This may go without saying but I like to say redundant things anyway: I would love to hear how anyone else dealt with this problem and what worked for them. I am on the verge of chewing through the pharmacy walls if they won't give me some kind of pain medicine and helping myself to anything I can find. Ahh, the joy of MS! The gift that just keeps giving.

Meaning Of My Spongebob Quote

Or what it means to me at least. I like that quote because it leaves so much open to be interpreted. Maybe it means nothing to you -- and I respect that -- but to me it says that it just is. It doesn't matter where you put the wood shavings of life, they will still be wood shavings. Not necessarily bad wood shavings, just wood shavings (or chocolates if you would rather relate to Forrest Gump instead). Something I repeat to my family often when they bemoan my fate because, believe it or not, I try not to bemoan with them because it just is and all my bemoaning won't change a thing. Yeah, most days it sucks, but it just is, there is nothing to be done about it but shuffle my wood shavings into whatever receptacle is most fitting for my mood, whether that be a bucket, pail, toilet, barf pan or even a bed pan. I never really had the "why me's" because I can only answer myself, "why not me?" I wouldn't give this to anyone else regardless of how I feel about them. Not even my worst enemies because then I would have to feel a measure of sympathy for them that I am not willing to extend.

My mom always says she wishes it were her instead of me that got the MS, and I always say, "what a load of MANURE!" My mommy has her BSN in nursing that she got in extremely difficult circumstances. After my dad walked out she worked full time and went to school full time to try and make our lives better by being able to provide for us because my dad tried to get out of paying child support and was very successful in avoiding it for many years. (Wow. That was a run on sentence that could rival Defoe's record for Most-Words-With-The-Least-Punctuation.). She donates blood as often as possible, she volunteers with the Red Cross, and even does volunteer work at local schools. She is not someone who needs to be limited by MS. I never did any of the above and, the way I see it, I have less to offer (due to my selfish, lazy nature) then she does. She does far more for this world and all who inhabit it then I do, and it would be criminal to give her my MS just because, as a mother, she would rather take on the all bad things that happen to her chicks (she is a total mother hen).

No matter what it does to me, it still just is. The good, the bad, and the ugly -- and it can get very ugly (steroids anyone? Especially after 5 days of being revved up to superhuman levels, then the crash that leaves my unable to move off the couch for a good 2 days afterwards.) I'll admit I enjoy my bad attitude; I enjoy wearing it like a loving cloak wrapped around me; I enjoy the energy it gives me to push the limits of what I can and cannot do; I enjoy the humor it gives me to deal with this disease, even if I'm the only one amused; I enjoy the choice of where I want to put my wood shavings each day. It's a quote that really speaks to me. It says, "it just is, Blindbeard."

Celebrate? Grieve?

*Update: I have to agree, nothing can compare to King's early work. The Shining and Pet Cemetery scared the bajebus out of me, heck, even It had my hair standing on end until that ending (a big spider?! Really? That just does not scare me one iota.) But for a good story that pulls you in, I have to say that Koontz is hitting that mark for me still and I am now on book 4 in that box o' books. I am also willing to concede that maybe all his books are not as good and I got lucky with the ones I got in that box, but so far so good.


Today is my 4 year anniversary of being diagnosed. Not really sure what one should do on such a day. I certainly do not want to celebrate, yet I don't really feel like grieving either. How does one commemorate such a day? That is the big question. I am working on a little poem-type thing for this occasion, but am not done with it yet, so it will come at a later date. I would have had it done but I have a terrible pain in my back and suspect a kidney infection (darn you, kidneys! I thought we were friends!). I am going to spend the day keeping the couch and my books company.

*Side Note: I don't usually ready fiction, but my mom got a box of Dean Koontz books at an auction and, knowing what a huge reader I am, passed them on to me. Out of a dry spell when I had nothing to read -- which can render me ready for a straight jacket -- I picked up one of the books. I have to admit that I am hooked on Dean Koontz right now. I have read 2 of the books and am working on my 3rd and he has not let me down yet. Sugarbowl read one of the books I haven't read yet and really liked it, so that one is next for me after I finish my current one. I loved me some Stephen King growing up, but his newest books seem to have disappointing endings, so I left him and turned my back on "scary" books. Dean Koontz has brought me back into the fold and I have not found a disappointing ending yet. I would recommend him to anyone who wants a great book that grabs you and forces you into that world. The only downside I have found is that sometimes I don't want to leave that world, and that is the highest compliment I can give a book.

I Hate Puberty

The gods help me, Princess has been hit with the puberty/pre-teen stick hard! She may not live to see her next birthday and I'm not too sure how sad I am about that. I told her I am going to kill her and bury her in the manure pile in the backyard, then her dog will eat that manure pile and expose her body thereby insuring me a life sentence in prison, where I will enjoy the peace and quiet and freedom from a snarky little booger like her. I'm not sure I can take her actual teenage years if this is a taste of what's to come. When I did foster care, they liked to give me teenagers because I "did so well with them." Its really not that hard. Say what you mean and mean what you say. Don't try to be their buddy and don't try to force confidences with them. It also helped that I am not interested in their "secrets" because I know their secrets ain't that great; mine are better, and mine ain't that great either. Regardless of my lack of interest, they spilled their guts anyway. And I was right: their secrets ain't that great. Princess is already starting that know-it-all attitude. No matter how many times I tell her that I have already been through the 5th grade -- and yes, I passed it -- she still tries to stump me with nuggets of wisdom that she learned in school and has the audacity to be surprised that I know them. She is shocked that I don't spend my days in a corner, not knowing what to do with myself when she is not around to tell me how things should be done. I am hopelessly uncool and I have no idea how to function in this world without her to hold my hand and lead me through it. Never mind that I have made it 34 years without being committed to an institution for the mentally handicapped, and, believe it or not, they are not chasing me around with a big dog net to catch me and put me away before I can do any more harm to myself. Although I think she is hatching a plan to call them and tell them where I will be to make their jobs easier.

It's okay for everyone to barge in on me in the bathroom and check out my goodies, but GOD FORBID if I need something out of the bathroom while she is in there! She wraps herself in the shower curtain like I'm some Chester The Molester trying to rake my eyes over her body. I have been through puberty, too. Why do you think I can actually fill out a bra? It ain't all Kleenexes in there. I am 100% uninterested in how puberty works. I already know. I don't need to check her out because I remember it all. Jabber is even worse. He acts like his beans and weenies are the most sacred of all things and we are all dying to check out what we have never seen before. I changed his diapers and, something I'm not going to say to him, I was married for a few years and have seen my share of twigs and berries, so I don't need to check his out. Alas, my words are all in vain.

This morning we got into an argument about what time I get up each morning. She tried to tell me that I never get out of bed before 4:30am and it has always been that way. Beings as I'm the only one up each time I get up in the morning, and I have always had a strict rule that I DO NOT get out of bed before 4am, I felt pretty confident that I do not get out of bed before 4am, not 4:30am. She only gets up at 6am each morning because I get her up, and if she lollagags too long in bed I pull out the noise makers from New Year's and get her up that way. But what is my knowledge of my waking up times compared to an 11 year old's knowledge? Nothing.

Thank goodness I have her to tell me what I'm doing wrong and how to do it right, otherwise I would be drooling in a corner waiting for her to come home from school and remind me to breathe. Whew! Another bullet narrowly missed!