Found

Sadly, I did not find Braincheese's memory (http://brain-cheese.blogspot.com/2009/03/lost-and-found.html). I found something I had forgotten I had: bones. My first year after being diagnosed, I did the steroids 4 times in about 10 months and gained about 55 lbs. 55 lbs! That's even more insane than me! Luckily (??) I was "underweight" to begin with, so the weight gain did not cause any concern amongst the learned, even though I was concerned. I've always been thin; I have a smaller frame so weight does not stack up on me in an attractive way. Being almost 5' 10" barefoot, I can hide some weight better than my shorter comrades, but I can't hide an extra 55 lbs any better than anyone else. My face became a perfect circle and I lost my cheekbones for so long, I forgot what having cheekbones even looked like. I was not used to having such a big hind end, and tried not to look at my butt as much as possible -- it only stressed me out to think that people could walk behind me and see that jiggling around like I was smuggling cottage cheese in my pants. If I am going to smuggle anything in my pants, I would choose something better than cottage cheese, like peanut butter, or Reese's Pieces -- mmmmm! Before I get lost in contemplation of all things peanut-buttery and race into the kitchen to pillage our supply of peanut butter, I better get back to the subject at hand. (Peanut Butter, you and I have a hot date later today.)

I had actually given up on the idea of losing any weight and had accepted myself heavier. After being "too thin" for most of my adult life, I was enjoying having some curves -- not all of them, mind you. But because my butt was behind me (no pun intended), I was able to forget about it and enjoy the rest of having some meat on my bones, especially after I dropped about 15 lbs. I am now about 10 lbs heavier than I was before I did the steroids and, to be totally honest, I liked my body better about 15 lbs ago -- something my mom cannot wrap her head around. I don't want to say she has an eating disorder, but she is really weird about her weight. She grew up in an extremely dysfunctional home and if they gained any weight at all it was an occasion to make fun of them, so she has issues about 3 fat cells grouped up together on any part of her body -- a problem her daughters do not have.

I started dropping the weight after my antidepressants were switched to non-appetite stimulating drugs. Then my anti-fatigue meds jumped in to help suppress my urge to grab the funnel and empty the contents of the kitchen down my throat. Lastly, the MS Hug makes it painful to have too full of a stomach, so I have to nibble throughout the day instead of eating large quantities of anything, so the weight just keeps dropping off. Yeah, it's nice to have my cheekbones back, but there is a definite down side to having bones again. I fell up the stairs the other day and got bruises in places I didn't know could bruise. When I was fatter, my fat cells cushioned my falls and I didn't get as many bruises. Now I am more bruise than woman. It's hard to get comfortable when you have to shift around to find a place that isn't too sore for you to lay on. It's starting to get warmer and I may have to show off my bruised bird legs in shorts because I can't take the heat and shorts keep me cooler. And, to top it all off, none of my clothes fit well anymore and I'm too poor to afford any new ones, so I walk around with saggy bottomed jeans that make me look like I need a diaper change.

I never had much of a sweet tooth and getting back to my old self, thanks to med changes, has killed any desire for sweets, so I can't eat a bunch of candy to make my clothes fit better and get my body back to where I liked it best. And I can't eat more because the diabolical MS Hug won't let me fill up my guts without causing me an illegal amount of pain. Guess I'll just have to get used to saggy butted jeans and stay away from the Depends aisle in stores lest someone think I need help changing myself.

My STDs Are On The Way!

Nothing makes me happier than getting STDs in the mail. I love to announce to everyone that my supply of STDs will soon be replenished. I wouldn't want them to worry about me running out. I have been stressing about whether I would get them before I did run out, so it sets my mind at ease knowing they are on their way. Come home to the oak tree, my little STD acorns! I was concerned that I wouldn't get my gonorrhea (Ritalin), chlamydia (Neurotin), or syphilis (Baclofen) before I ran out and had visions of pain, fatigue, and stiffness taking over my pathetic life -- even though they are welcome to it. Thank goodness that all my crabs that died off (antidepressants) will soon have new ones to take their place! I love getting a package of STDs and keep a sharp eye out for the mail person so I can thank her profusely. I wouldn't want anyone to doubt my excitement about receiving them and knowing they didn't fall into the wrong hands. All those STDs could get ugly in the hands of someone with less-than-noble intentions.


*Author's Note: My mail order meds come in a package with a huge STD stamped on them. I know that means "Standard" but it's more fun to assume it means something else. Simple minds, simple pleasures. Now, if you can excuse me, I need to wait by the door for my STDs.

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