My biggest pet peeve is a pretty simple one: rude people. It brings out the worst in me, even though my little sister says I am a bull in a china shop when I hear something I don't want to and then proceed to kill the messenger. Like when I was trying to get the new Eragon and Walmart was sold out. The lady, not realizing that I have been waiting for over a year for that book, brushed off the fact that some moron under-ordered that book and they were sold out by the time I got there, and I get up early so I was not exactly in the store at a late hour. Her blase attitude irritated me so much I wanted to rip off her head and vomit into her spinal column. She was too busy standing around gossiping to see if there were any more in another part of the store. I didn't give her Shaken Moron Syndrome, which she should thank me for, but did stalk out of Walmart telling myself that I will not waste my pennies there ever again. Alas, their cheap prices reel me in in spite of my vow to see Walmart crash and burn. Yesterday I went to Walmart to spend some pennies and look over their cheap prices of things I may not really need (like that has ever stopped me before), when I encountered a woman with a service dog. (Speaking of dogs, one of mine just let loose a stinky so I may not be too coherent for the rest of this post.) I am not one to judge anyone with a disability, being a twisted heap of gimpness myself, but this woman was so rude I had to hold that against her. First, she was blocking an entire aisle with her fat butt and cart. I said "excuse me" and she glanced at me and didn't move one fat cell to let me pass. My little sister said that maybe she was blind and that was why she had a service dog, but I know service dogs are used for more than just the blind and she was not blind, being able to see an employee and rope them in to do her shopping. I ran into her in the beauty aisle getting an employee to get her different pit juices for her to smell and see if they would be good enough for her precious pits. I was looking for pit juice for Princess and knew which one I wanted, but I had to wait for her majesty to move her fat arse to be able to get it. I gave her the stank eye for being so impolite as to not move when some one is obviously trying to get around her. She had the look in her eyes of, "I'm disabled, Peasant!" of which I think we have all seen. I'm disabled too, but I don't use it as a reason to make others my servants. If anything it makes me more determined to do it myself, thank you very little. But not her. After she found the only pit juice that she could possibly lower herself to rub on her body, she moved on to another part of the beauty aisle, near the, *gulp*, douches. I ran away with thoughts of Self-Righteous-Hag scented douches filling her meat curtains hole that effectively killed my appetite. I wanted to avoid running into her again because, believe it or not, I didn't feel I could trust myself not to say something rude and didn't want to ruin my good mood. Its rare for me to exhibit such self control and I wanted to be able to keep ahold of my tongue because it has a habit of spouting out stuff before my brain has a chance to think it through. Going through housewares, I saw her again, this time looking for vacuum bags, ordering the employee to find her the right bags. I heard her rudely say, "Either you have it or you don't!" to the unlucky employee and several tart things came to my mind. I went in the other direction. But that diabolical being seemed to have the same shopping list as me and I ran into her again in the electronics aisle where she was ordering her subjects to find her the exact extension cord she wanted. I was thinking about what I would do with that extension cord and her if we were left alone too long when our eyes met again. I'm a gimp. I think that is pretty well established. There is no mistaking the fact that I have a disability. The way I walk is very obvious that there is something wrong with me. I could discern no such disability in her, but I know that does not mean there is not one. I could get a service dog if I wanted, but I don't want, so I don't have one. My balance is terrible and I can't walk very far without some kind of support, but I try not to be rude to people because of it -- only when I meet rudeness do I respond in kind. So when her haughty eyes met mine and she saw how I was walking, I saw a glimmer of... what's the word I want here? Shame? Recognition of a kindred soul? Whatever it was, her look changed. Instead of gearing up to try and shame me for trying to get around a disabled and entitled person, she decided (wisely) to change tact and move over a millimeter for me to get by. I was ready to let loose this 3rd unlucky meeting and inform her that she was not the only shopper with a disability and maybe she needed a douche for her attitude (it needs flushing out), but she didn't take the challenge offered in my look. I passed her again later and she was being more polite to the person helping her out. I know I am not always the nicest. I know that I do not excuse disabled people the way some of them are used to. And I know that I like it that way. Don't get me wrong, I definitely have my "pity, party of one" days, but I keep to the house and don't torture others because I'm disabled. If anything, I can't stand being treated differently because of my disability and I won't treat others differently because they are disabled too. But if you want someone to make fun of you for making others get you your favorite douche, I'm your woman.
Ever feel like you just keep jogging along in the same old ruts? I got that right now. I have a hideous case of the ho-hums and they are kicking my butt. My house is about to fall down around us and I'm the only one who has noticed. I had to kick yodelers off the laundry pile to get it downstairs. No matter how many times I tried to tell them that it was not a gnarly ski slope waiting to be conquered, they climbed right back up and started that whole "RIC-OOOOO-la" thing again. Different aspects of my neurologist visit are rattling around my head like a swarm of angry bees, making me reevaluate different things about my life and the things I am/am not doing. I hate introspection and try to avoid it in general. I know that I need to do such-and-such and blah blah blah, but that doesn't mean I want to. The worst part of leaving one's comfort zone is the discomfort, but I'm sure you saw that one coming. So to help purge this stuff from my brain, I am going to get rid of it on here and maybe I can get back to life, or what I call my life. I find writing is a great catharsis for me. I don't like to talk about my problems or what is bothering me to my family too much because it only makes them upset and worry about me, neither of which I am too keen on having to endure. I know they mean well, but I don't want to be coddled and treated like a delicate invalid who needs gentle words and loving support. Sometimes I need to hear the ugly truth no matter how much it angers me. Like my little sister telling me that my bad attitude is my biggest problem and that I am a huge pain in her huge rear end. That is refreshing. So here is what is making me more of a lug than usual:
Undiagnosed Mental Disease? To be 100% honest, I know I do suffer from something more than just your garden variety depression. I come from a long line of crazy people so it only makes sense that I inherited the crazies too. My father, who I got the MS from (it runs in his family. He has 2 cousins who had it), also has bipolar disorder. Or so he says. I think it is a misdiagnosis and he is really borderline, but what would I know about it? Only that my little sister has borderline personality disorder and there is a strong resemblance between the two. I think (and this is killing me to admit) that I am bipolar. I go through phases where "I am Blindbeard! Hear me roar!" then when that phase is gone I go into the I-am-worthless-and-suck-eggs phase where I don't want to even get out of bed and if I do it is only to mope around the house and avoid all public interaction. When my neurologist was reviewing the medicines I take, which she does often, being shocked (impressed? horrified?) by the amount of antidepressants I take and the problems I still have, she asked who put me on a certain med because it increases appetite. Those dirty words will strike fear into any fat hag who has minimal activity besides pushing buttons on a remote. So I decided that I needed to take matters into my own fat hands and have been weening myself off that med. Sometimes I hate being put on something that I'm not sure I want anyway and I like having some say about what goes down my gullet. Not everyone enjoys that quirk in my personality.
Them: "How is X working for you?" Me: "I stopped taking it/changed the dose." Them: "Why?!" Me: "I don't feel I need that/that much of it." Them: "I prescribed that for a reason!" Me: "Are we done yet? I need a nap and want to finish this jar of peanut butter before someone else does."
Psychiatrist I'm glad I'm finally going to see someone about the psych meds I take. I think they need tweaking. There has to be something out there that will work better for me and make me feel better. And anyone who has been there knows how hard it is to get into see a psychiatrist, so I was pleasantly surprised when the nurse called me the next day to schedule an appointment. While getting all my information (read "billing information" because they are more interested in how they are going to get paid) the nurse asked me why I wanted to see the psychiatrist. Uhh... because I wanted to see what her plans were for this Christmas, why do you think?! I told her the truth: because I'm crazy. She yukked it up and was able to pencil me in. I find it hard to believe that that was a knee slapper; she has to have heard it a million times before, but I appreciate her humoring me.
"You Need To Socialize More" But what if I don't wanna?! What if I want to build myself a hut out of sticks and twigs and live a hermit's life? I know I need to get over getting MS, but it is so much easier said than done. I have been pondering this whole need-to-get-out-more-and-mingle-with-the-natives thing and I know I need to, but it is hard for me to leave my sticks and twigs hut where I am comfortable tending to my 57 cats. My little sister agrees with this so much I was annoyed by her hearty agreement. She thinks I need to find a boyfriend to help me get out more. She also thinks a "pickle tickle" (her words, not mine) would help my bad attitude. The only pickles I am interested in are the ones in the fridge and I KNOW I do not want them tickling me. So lately I have been accompanying her more when she runs around. I even told her I was willing to shop for boyfriends, but I don't want anything serious. I'm not sure where one can find boyfriends anymore, but I'm on the look out. I thought a home improvement store would have a good selection of boyfriends but I haven't gotten to one yet.
So there it is. The things that keep going around and around my head. Now I am off to try and get something done before the couch starts whispering sweet nothings to me. I can never resist a couch that has sweet nothings to whisper into my ear.
*Author's Note: Due to a rotten little dog who decided to chew up the cord to our computers, we had to order a new cord which took several days to get in the mail. Besides the irritation of not having internet access for a few days (EEK!), we were very disappointed that he was not electrocuted by chewing up an electric cord. We would not have cried too much if we had woken up to a charred little Midget Poo Poo Platter. Alas, karma only lies in wait for the rest of us and not little dogs who really deserve it.
While having a love affair with my couch, my neurologist's nurse called me to schedule an appointment because it had been awhile since she last saw me. I was happily sawing logs when she called but my little sister's bf/f answered the phone, and not knowing my deep hatred of being woken up, woke me up and gave me the phone. I was forced to make an appointment for the next day, much to my dismay: I was hoping to avoid having to go to the doctors anytime soon. It had been awhile since I last saw her and, while I like her, I get tired of doctors in general. It irritates me that after nearly 4 years of MS'ed bliss, I still have to see my neurologist every 3 months due to my aggressive disease. I envy those who only have to go once or twice a year and remember reading somewhere that an MSer should see their neurologist at least that often; I was jealous of those who are so stable they are not chained to their neurologist as often as I am. I stretched out this last doctor-free time to 4 months and was feeling like I was getting away with a crime when they called and strong armed me into coming in. Not willing to let me slide like that again, they scheduled my appointments for the future so I couldn't get away with coming in late again. Darn it! I hate when they know me well enough to know that if they don't pin me down I will avoid them.
Anyhoo, I always write down any questions/problems/suggestions/thoughts/concerns before going in, so I had a nice little laundry list of things I wanted to discuss with her, beings as I had to go. I expected this visit to be much like every other visit, but I was dead wrong. I left her office hornschwaggled and worn out from being put through the wringer. She made me do the usual stuff like walk on tip toes and my heels, but then, being the diabolical thing she is, she had me try to hop on each leg and do all these different ways of walking to see how my balance is -- crappy, in case you were wondering. I told her that my fatigue is kicking my round behind so she wanted to check my thyroid to make sure that wasn't adding to my overwhelming desire to marry my couch, so I got a blood draw and a huge, ugly mark from that. My bladder has recently sprung a leak (instead of the usual 5 minutes to get to a bathroom, the time has narrowed to about 2.7 minutes and then it will let go) so I had to give a urine sample to see if I had a bladder infection that was adding to the problem. At a general doctor's office, there are about 50 million urine samples in the bathroom and 75 million of those little wipe things they give you, but at my neurologist's office there were none. Normally I throw away those little wipe things because they stink and leave one too wet and moist in an area that I don't care to have feel so... moist. But because there was not a trash can overflowing with those wipes, I had to use them or risk getting caught not properly preparing my urine sample. The nurse asked me if I wanted a hat, and my poor MS addled brain misunderstood and thought she meant a real hat, so I declined, not feeling I would wear a hat from the doctor, so I had only the little cup to try and catch urine with my shaky hands. The nurse was so amused by my gaffe, I was embarrassed by her laughter.
Because I suffer from the crazies, my neuro wants me to see a psychiatrist to evaluate my antidepressants and see if maybe there is something that will work better and have less of a sedating effect on me. When I first started my current psych meds I was suffering from severe anxiety so they were appropriate at that time. Now I have more of the crushing depression and fatigue, so she wants me to be reevaluated. She also feels that I have an undiagnosed mental illness that if we get a proper diagnosis for it will be easier to treat me and have a better effect on my life and outlook. I agree that I could use a better regime of psych meds and that I probably do have an undiagnosed mental problem -- I have extreme ups and downs and I am a littleOCD, as much as that pains me to admit. I will only eat an even number of things and have certain other rituals that I am too embarrassed to admit to on here, but I did tell my neuro about while my face burned a bright, hot red. She thinks I need a mood stabilizer and I agree. So I now have to see the psychiatrist too.
While doing all my walking and stretching and other things to see how I am doing, she asked me if I have been exercising. It is a HUGE downside to my personality that I am not a liar, so I told the truth: no, I have not been exercising for the last few days... or years, but who is keeping track? Sadly, she is. On top of everything else I have to go back to physical therapy, which is a fate worse than death! I HATE HATE HATE physical therapy. It sucks eggs but I also know how much good it does for me, but it sucks eggs too much for me to really care about the good that comes from it. I also need to get an exercise program and stick to it, she doesn't care if it is the YMCA or the MS exercise facility here in town, I have to get off my butt and DO IT! I know I need to, but sometimes when one is battling depression one doesn't want to go exercise even though one knows it will make them feel better. And this one would rather stay on the couch and flip channels for a little while longer before having to run the gauntlet in PT.
She also made me get the flu shot yesterday. The shot itself was nothing; barely felt a thing. I was pleasantly surprised that it was so painless and easy and thought to myself that I had been being a baby and dragging my feet for nothing. Ha ha and ha. The joke is on me. The shot was nothing, but my arm is so sore and stiff now and of course I had to get it done on my left arm because that is the arm they drew blood from so I figured keep all the ugly to one arm. Too bad I'm left handed and just want to keep that arm curled up against my chest because extending it or using it HURTS! But I am so left handed that I have no choice but to use it, my right hand being an almost useless appendage.
So I was hornschwaggled into the appointment, having been asleep when they called and forced me to come in. Then I was hornschwaggled at the appointment by being forced to see a psychiatrist, go to physical therapy, get a flu shot, have blood drawn and pissing all over my hand because I didn't want one of their hats. The only good that came out of yesterday is that I am getting a copy of my MRIs. I figure that I bought and paid for those little boogers, so the least they could do is let me have a copy of them to put the pictures on my Christmas cards this year. They knew that if they didn't pin me down while they had me I would avoid them for as long as I could, so they scheduled my next 2 appointments with them while I was there. And I foresee more hornschwaggling in my future.
The other day, Friday to be exact, I got a letter from my lawyer with the copy of his letter to the Appeals Group Of Something Or Other For Wrong Judgements Made By Retarded Judges. It made me glad that I had a lawyer who knew so much legal stuff and could reference so many laws that *%&!# judge had not bothered to use in this case. It also contained information that the judge had not bothered to consider or decided to throw out, which it turns out was unlawful for him to do so (scurvy bastard!). It always interests me how others view me and I am always curious about what doctors write about me but don't want to tell me. And then I get an envelope full of the stuff they don't tell me and I realize why they don't want to tell me any of that stuff. I know I am a mal-adjusted, crazy person, but to see it in print?! Wow. I didn't realize:
A. That I am thatmal-adjusted.
B. That my simple conversations with them could reveal so much about me. And
C. That they are so darn perceptive to pick up on the little nuances of my words and body language.
I had an exam by the SSA shortly after being diagnosed. I think I had only had one attack at that point -- but it was a major one. The findings of the examiner were rather astute. He opined that I would have major difficulties with adjustment to having MS and a high probability of "major depressive episodes" (they will always be nervous breakdowns to me) in the future -- he used a different term for the "major depressive episodes" but I can't remember what that term was; I just know that is what he was saying in fancy talk. This came a year before my suicide attempt and I am wondering how I acted that clued him in on all of this or if he had a crystal ball, it being so accurate (and, yes, that hurt to admit that about the SSA). The judge didn't take any of that into consideration when he found me to be not-insane-in-the-membrane, even though it came straight from the SSA's horse's mouth. Both my therapist and the woman I see for my psychotropic medicines, who is a highly respected mental health nurse practitioner, said the same thing without knowledge of anyone else's findings. My findings on finding out about this are disturbing, to say the least. Maybe I am more transparent then I thought because I am the poster child for mal-adjusted MSers. They predicted that I would have major problems with adjustment way before those problems started to manifest themselves. The psychiatric hospital that I spent 5 days of non-luxury in, diagnosed me as having a mood disorder and severe adjustment disorder. Severe? Really? I wanted to take issue with that but my little sister laughed and said they really nailed me with that one, so I had to accept it as truth as much as it irritated me and made me want to pull out my soap box and contest it on the nearest street corner. The psychiatric nurse also found me to be suffering from a severe mood disorder, secondary to MS of course. (Not sure exactly what a "mood disorder" is. I'll have to look that up later.) Among the other things that they said about me that I wanted to call BULLS*IT on, but my little sister agreed with 100% were: I have a very short attention span; short term memory problems (I can't remember what I was talking about 5 minutes ago and ask the same questions over and over again -- good song!); am easily distracted (my little sister says I will run off to chase something shiny before she can finish a sentence); will distract others with my lack of focus (if I was in the work place -- oh look! Something shiny!); have difficulties with change and do not adjust to said change well; and am at a high risk of further major de... de... can't remember the word right now. Decomposition? Deflation? Decompensation? Detraction? Detention? I don't know and I don't want to look at that letter again to find out. I know I'm crazy, but I really don't want to linger over my craziness in black and white. I find it de... de... demanding? Delicious? Detestable? Degrading?
Sorry for my prolonged silence, but when life is such a steaming pile of nothing, I don't have a lot to talk about. I got over my migraine a few days ago, but I had a less major headache for a few days afterwards. Then I had a sick kid for the last 2 days. Then I accidentally took a double dose of my baclofen one day and was a warm pile of jello for that morning. All in all I am suffering from acute (nothing cute about it) cabin fever and may end up chopping up my roomies and stuffing them into the walls of this house for added insulation, so watch for me on the evening news. I'll be the one with the wild, untamed mass of hair, pacing and chanting, "It puts its stuff in the right bin or else it gets the hose again!" My little sister's bf/f plays in a band and he has a gig tonight, which my little sister also has off, so I may have to go be social tonight -- EEEEK! Yesterday, I poked my head into their room, a dangerous test of daring courage, to tell them that I had to get out of this house and was feeling like I could use some social interaction. What is wrong with me?! I never want social interaction. If anything, I shrink from social situations and get extremely nervous when I have to walk in front of a bunch of people. But right now I feel like I have to get out and mingle with the natives or I will go crazy, and that is a path I don't want to go down again. I know that everyone at the bar they are playing at will be drunk and no one will notice a thing about me, so that is in my favor. The fact that it is a college town and I will probably be the oldest slut there is not in my favor (nobody wants to be the oldest whore in the bar). But I'm not too sure I really care at this point as long as it gets me out of this house for a few hours.
As to the title of this post, it is my favorite greeting when I run into someone I know. One time my little sister and I were in the same drive-thru line, I was right behind her so I rolled down my window and yelled out the title of this post. She was embarrassed (what's new?) and told the lady at the window that it was her sister that yelled that. Later she asked me if I had to do that. Why yes, I did, thanks for asking. Even if we pass each other by the house I still have to call it out. I ask everyone who comes home from whatever they were doing the same thing, to their amusement when I ask my little sister's bf/f. I am an equal opportunity embarrasser. Although I have to say, reading your blogs made me feel like you guys were not doing so great, Beautiful. I'm sorry to read that so many people are struggling with their emotions and MS right now. I go up and down and back and forth with my emotions. The only reason I haven't come totally apart at the seams is because I take an ungodly amount of anti-depressants and I wouldn't have it any other way. It seems to me that the emotional aspect of MS is all too often swept under the rug. I try to find out if what I am feeling is normal and can't find any in-depth information about the emotional distress (might not be the best word, but I am positive it was "distress" for me) that can come with MS. And really, how could it not come with it? Unless you have such a mild disease that it doesn't affect your life (in which case I hate you), it comes with the territory. But all this would be much better as its own post, and I should check your blogs to see if you have already covered this before I launch into it, you being so much more informed and up-to-date than me. I am perfectly content to bumble around and be #2. Besides, sometimes I get so darn sick of MS I feel like if I read one more word about it I am going to go crazy and start chopping people into bits.
The only reason I am in a foul mood is because I have a migraine. If I didn't have a migraine I would be doing something better than sitting in a dim quiet room right now. It all started the other night. My little sister's bf/f was checking on something of his in the garage when the cats ran into the garage and wouldn't take their rotten, cat-box-ignoring-when-in-garage butts back out of there. Acting like the garage was better than a fish market and pretending to be feral, they hid from us and resisted any attempts to get them back out. Alas, the lawn mower and the gas can were throwing off odors of gas that came boiling out of the garage (left the door open for the ass clown cats) and stunk up the whole house. As soon as I smelled the gas, I took my fat arse off the couch and cracked open the garage door to let the fumes out, but the damage was done. I woke up with that funny feeling in my teeth that I always get from migraines, like they are gritty and rubbing against each other funny, and makes me brush them repeatedly throughout the day. I finally got my Tysabri done today so I am not feeling the burn from that, but I am in such a foul mood I felt like fighting with someone. I didn't want to take the fight home, so I texted my ex husband and told him that I thought a pygmy dwarf is better hung then him. That and I thought it was past time for him to suck his mom's d*ck. He thought both of those suggestions were fabulous and thanked me for pointing them out to him. For some reason the man loves my bad moods and was enjoying mine so much he wanted me to come up there (2.5 hours away) so we could have some sweet lovin's down by the fire. I had to politely decline and let him know that I would rather become a nun or pith myself with an ice pick, than have any of that in my life. I'm not really in the mood for boys right now.
I can't see a thing right now either. Migraine + MS = One very blind Blindbeard that doesn't want to drive anywhere. My thoughts are scattered so I hope this makes some sense. And my email is not working right now, which I don't care too much about yet, but I probably will when I feel better. I am now going to go back to my dim, quiet, hidey hole. Be back when my teeth stop squeaking. BB
Dear Diary, Trying to change something about yourself is a lot harder than I was led to believe. I have been working on having a better attitude but karma is testing me. Yesterday I ran some errands with my little sister. We went into a store that didn't have shopping carts and I can't walk very far without some kind of support, be it a cart, cane, walking stick or some one's arm. I was using my little sister's arm for support when a woman (she doesn't deserve to be called a lady) who was walking by, stopped and said, "Are you all gays?" At first I tried to be polite and just said that I have MS, but the blank look on her face irritated me so much I snapped, "I'm a cripple, you f*ckin ass hat!" My little sister was mortified and thought I could have handled it better. I think she got what she deserved. After I said that she ran off in shocked horror, whether it was because she encountered gays, or because I retorted so rudely, I do not know and I do not care. We have all seen people from every walk of life and every sexual orientation, but to stop and ask! Are you kidding me?! I don't regret my response, but my little sister says I have a tendency to kill the messenger, and she may be right. I hope that woman learned a good lesson yesterday. I hope if something like that happens to me again I will have the clarity of mind to say something a little less profane. Maybe something along the lines of "are you all a stupid tw*t?" Not sure what I could have said to not embarrass my little sister, but it seems that try as hard as I can, I am forever embarrassing her. When I was sick and she took me to the doctor, she was embarrassed that my socks didn't match -- she thought I would at least wear matching socks for the doctor. When we went to the DMV to switch her plates and the lady behind the counter was so rude that when we were leaving I told her thanks for being such a bitch about it, my little sister was horrified and ran out the door. I could go on, but why bore you, dear diary? I thought changing my attitude would be easier than this. Maybe I need to work on my outspokenness when irritated. I do have a tendency to kill the messenger. But when they are so rude about giving the message, can't I respond in kind? I have my work cut out for me. Love, BB
And I don't mean that in a good way, especially as I don't do any traditional exercises. I try to stay active for exercise, which is not always an easy thing to do. I have 2 more days until I get my Tysabri done and I am hurting! My legs feel like all the cartilage decayed and bone is grinding on bone. Yesterday I had to go to the store for a few things and I walked like my joints had frozen up. Going down a gentle decline, I could feel my hips grinding against my pelvic bone. The itchy spots on my upper arms are singing a song of their own and I am scratching away at them trying to get them to be quiet. I also have an itchy spot on the top of my left foot that is driving me to scratch until I have a massive scab there. My legs are cold when it is warm and hot when I go out in the cold, making showering a strange experience. I am so tired all I want to do is lie in my mattress grave and sleep even though this house needs some serious attention. I took a 3 hour nap yesterday and still went to bed early! Sometimes I have a hard time figuring out what the worst part of having MS is. Some days it is the fatigue, others the pain, and sometimes it is the unknown that is lurking around the next corner waiting to ambush me when I am feeling like I am starting to come to terms with having MS. I told my little sister yesterday that the only good thing about feeling the burn is to remind myself of how much Tysabri helps me and what I would be without some kind of DMD. I really feel for our brethren from days of yore who did not have any DMDs or meds to help them out. When I read about accounts of MS from those days, it makes me so glad to have the options we have now. I especially feel for those who had an aggressive disease because I know that would have been me just 50 years ago. I would have spent my days in my mattress grave and I'm not sure I could have written such poignant things in that state.
I may have to hibernate until Friday. I'm so stiff and tired I don't want to do a thing. Does anyone else get the burn from putting off their meds? I tried to ween myself off of Neurotin several times, but the achy pain was too much for me. And I can't even try with the Baclofen -- I would be a stiff board without it and my RLS would be out of control, a scary thought. I try to keep my meds to a minimum, but sometimes I think I should up some of the dosages and maybe I would feel better and be more productive. Right now I don't really care about any of that; I am just hanging on until Friday.
Dear Diary, Today I am putting the "new me" plan into action. I decided I wanted some things to be different so I am starting with the (wo)man in the mirror -- I used that reference because I know you, dearest diary, are a secret Michael Jackson fan. But don't worry, I won't tell a soul. I am going to be pleasant if it kills me today! I am going to meet others' eyes and smile when making eye contact. Do I have to wear makeup to do this? Is it enough to be pleasant without being attractive? Doesn't what's inside count more, or is that really only what ugly people say? *Sigh* I don't think we will ever know, diary, because we are part of the beautiful people. Oh, this burden of being one of the beautiful ones. But everyone knows MSers are the most stunning creatures on this planet.
Diary, why didn't I buy you at Target or Walmart instead of Hot Topic? Your goth-emo cover is, well, scary and disturbing. I pulled you out from under my bed last night to write to you but I had forgotten how scary you are; you scared me so bad I crapped my bed. After I changed my sheets I was too tired to write to you. We may need to think of revamping your cover.
I have to tell you the truth, diary, I'm a little scared of letting down my defenses, but don't tell anyone. It is so much easier to skulk through life than to risk letting someone get close to me again. I was mentally going through my list of exes and I realized that they are a bunch of ass hats. My little sister, who has her fair share of ass hats in her past, thinks I need to try something new when it comes to men. I'm going to ponder that, but I don't know if I really want a man in my life right now. I am so ambivalent about it. Titter and sweat under covers together, yes. Tell my life story to, no. "Gee, when I got thrown into the loony bin..." is not exactly a great pick up line. But on the other hand, I don't care what others think -- ambivalence at its best.
Okay, diary, I have troubled you long enough. I am off to terrorize the denizens of this city. I am going to put my new attitude to work today. And maybe get you a new cover!
*Update: The reptile show was middling at best, but snakes and spiders and frogs (oh my!) don't do a lot for me one way or the other. My little sister loves the idea of a tattoo of a snack cake or something sugary, she is only concerned that she may lick it if it looks too delicious. We called her Sugar Bowl growing up so I thought she should get a sugar bowl tattoo. While I am not in as much pain, I am still totally wiped out, more so than usual, and look forward to the weekend being over and having the house to myself again. Tired of people trying to share the couch with me.
The knife in my back has been down graded from a steak knife to a butter knife, which is great news for me! I'm starting to feel more alive than dead and am thinking about getting back to life. I still am coughing like I have the black lung, but it is getting better -- it hasn't made me throw up again. Still short of breath so I huff and puff at the slightest thing; not exactly the huffing and puffing most people want more of in their lives. And still tired and lazy, but not as much. I may get dressed and leave the couch today. Maybe. This house needs some TLC and as much as my roomies have been wonderful, they just can't seem to see the huge laundry pile, only grabbing what they need for the day and washing that; or the dust that is dimming the tv screen, they keep watching through the dust; or the dishes stacked to the ceiling, only loading the dishwasher when we are out of everything and there is no alternative. But as I am working on having a better attitude in my daily life, I have only thanked them for what they have done and not pointed out the things not done. Here is a quick rundown of all the thrilling things that have been going on with me:
My little sister wants to go to a reptile show today. She has a passion for frogs and chameleons that surpasses her love of snack cakes, and that is saying something. She has a frog tattoo but not a Hostess tattoo. I don't want to give her any ideas because she would probably get some donuts or cupcakes tattooed on her. I don't have much of a sweet tooth except for "When Steroids Attack" and I eat my way through the entire kitchen looking for sweets.
I had to put off my Tysabri until next Friday because of the black lung so I will probably be a mess by then. Even a week past my usual schedule and I start to feel the burn. My MS symptoms kick up and kick my round behind. I start getting achy legs again, my vision worsens (who knew that was possible?!), I get that odd sensation in my legs and right arm where hot is cold and cold it hot -- a strange and disconcerting (to say the very least) feeling, I stumble and lose my balance more, my leg drags more than usual, the overwhelming fatigue that makes the couch my BFF, you know, all the fabulous things that MS does to a body. But as I wasn't sure that I wanted to go into that good night just yet, I felt I should probably put it off. And my doctors concurred and made the decision for me so even if I had wanted to go forward with Tysabri I couldn't have.
I don't want to add to any one's burden of sorrow right now, but I have to mention this. My favorite jeans died just before I got sick. I will wear my jeans ripped to shreds and actually enjoy old worn out jeans, but these went to a place that was beyond saving: the ass ripped out. I will gladly wear jeans with tears and holes everywhere but there. As I am not really into patches and sewing them was out of the question, I had to give them a proper burial in the garbage can. The horror of losing your favorite jeans is something everyone can relate to. I can't find a decent pair to take their place and it may be some time before I find a new favorite pair. R.I.P. jeans. You served me well and I look forward to wearing you in the afterlife.
I've been skulking around your blogs and it seems everyone is a little depressed right now. Is it the change in weather? A rough patch in the already-rough-road of MS? A plague of sadness sweeping the nation? I'm sorry everyone is feeling so down and I hope it doesn't attack me. The only good thing about being depressed is how good it feels to start feeling better.
Okay, I am being dragged to a reptile show so I hope everyone starts feeling better and if nothing else think of a good snack cake tattoo for my little sister. Love ya! BB
*Update: Got the chest X ray and the doctor said she did not see a huge pneumonia so she thinks we caught it early. They did a blood draw on me to check... something about something in my blood. She also said that antibiotics won't help any and to go home, go to bed, and drink plenty of liquids, blah blah blah, and all the stuff you all said. (You guys are so smart!) She gave me a prescription for cough syrup with codeine that I didn't get filled -- I don't need help sleeping and I am not really hip on mixing it with the meds I already take, even though I coughed so hard I threw up last night. I can't wait to get back on my feet because we are in danger of the pigs moving in and pushing us out. Other than that I am enjoying lounging in pj's all day, watching movies and having drinks and soup brought to me.
Go frickin' figure. I just got over being sick and what happens (right before I am supposed to do Tysabri)? I get sick again only this time it is a doosy. (Or should I say a sha-ZAMshadoobie?) My back has been hurting the last few days and I feel more tired than I ever have. I brought up my winter clothes from the basement and huffed and puffed like a dog in heat, trying to catch my breath. The night before yesterday, whatever that would be called, I really started hurting; my back, right below where a bra strap goes, was killing me. It feels like there is a knife sticking out of my back on the lower right side. I'm walking like a little old man, hunched over with a hand on my back trying to find the knife to pull it out. I went to the doctor yesterday to see if maybe I had bronchitis or what and got a bigger shock than I had expected. I'm sure by now you have figured out what I'm going to say: pneumonia. That dreaded word. I don't know much about it and it seems it is a fickle thing that is hard to predict the course it will take -- sounds a lot like MS. I've been trying to find information on it to know when or if I should go to the hospital, what I should be looking out for etcetera, because I know it can be a potentially fatal disease (is it a disease? I have no idea and I am so slowed and foggy I'm having a hard time finding the right words.). The doctor gave me some antibiotics and said that if I'm not better in a few days to come back in and get a chest X ray. She didn't do one yesterday because, I can only assume, I was still standing. She did write on the sheet where they write the diagnosis on, under Multiple Sclerosis of course, that they need to rule out pneumonia and when I asked her what was wrong with me -- she never came right out and said what was wrong -- if I had bronchitis or what? She said, "Bronchitis, a lung infection, pneumonia." Not exactly what I wanted to hear. Today I am feeling much worse and think I am going to call them back and see about that chest X ray. I had to quit smoking because it tasted disgusting and my lungs revolted at the tiniest bit of nicotine, that and it seems stupid to smoke when it is suspected you have the hideous P word. I may have to take a holiday from blogging until I am able to muster the energy to move my fingers. The only way I got this done is from the coffee I just drank and I am already feeling very weak again. Take care, gentle readers, and I hope I'll be back soon.
The comments from my last post were excellent. In fact they were so good I decided to take your advice and I am now using sha-ZAMshadoobie as often as possible to the confusion of my roomies. I also could only think of one thing that is "dys" and that is dysentery and I really do not want that, so it made me thankful that I was only suffering from the dis-es. Talking to my mom, after she read my blog, she suggested that if I want things in my life different, I need to change some things about myself. At dinner last night I was talking about that and how maybe, maybe I need a better attitude, which my roomies agreed with so quickly and enthusiastically that I thought maybe I am a teensy, tiny bit crabby and a little too anal sometimes. I am trying to put myself in their place and be more empathic to others' problems, worries, concerns etcetera. I found my mother's advice to be very profound. It only makes sense that if I expect things to change that I change something about myself, the way I handle things, or even my attitude. It makes me think of that quote from a man who survived one of the WWII concentration camps (I'm sorry that I can't think of his name right now) who said, "The last human freedom is the ability to choose your own attitude." And to that end I am choosing to be a more pleasant roomie and have a more upbeat attitude in general. I don't want anyone to keel over from the shock of that last statement, especially as my defibulator is not charged up, because I may be more pleasant in my day to day life but I am still at war with MS in general. It is not going to get off that easy. I'm not about to go skipping and singing about MS, it still frustrates and infuriates me, but I am not going to take it out on those around me. This may end up being more difficult than I am bargaining on. I have been wearing my coat of many mood swings for quite some time and throwing it off makes me feel a little... exposed. But, beaver's dam it all, a major change is overdue! I am going to be empathetic, more patient, and tolerant if it kills me, and it may very well. I have been wallowing in my selfish anger and lashing out on those I care the most about for too long. Instead of internalizing my anger I am going to work on letting down the walls and letting those who want to be there for me help me. Why is asking for help so hard? Especially when most of us are more than willing to help out anyone who needs it? I hate working on myself, it is so painful and uncomfortable; but this time I am determined. I have punished those around me enough, they have been through a lot with me and still want me around them, which says volumes about their quality and the depth of their love for me. So I am embarking on a new course. This could get ugly. Not sure the public is ready for a new and improved Blindbeard. But don't worry, I still feel the same way about MS and will still spew my usual irritation with the disease that tries to tell me what I can and can't do. Now I am off to spread my new attitude to the world at large. Good morning world and all who inhabit it!
Do you hear that? That "thump drag thump drag" sound? That's the sound of me pacing the floor with an MS leg. I don't know what the word is for how I am feeling, but I do know that it starts with a dis- and them something. My word recall is not always so hot and I have no idea where my thesaurus is, or if I even have one anymore. I look at my lot in life and realize that its not a lot but it is my life. Somewhere along the lines everything got messed up. I never planned to be a bottom feeder who cooks and cleans for a gaggle of ingrates. I love Princess to death and would lay my life down for me with a smile on my face if that is what it took, but sometimes I feel like there has to be more to life than spending all my time with a 10 year old, watching PG13 or lower rated movies. I hate to admit this, but sometimes I am jealous of those who can still work. I know my little sister goes off to work and sees me getting ready to nap and is jealous that I can stay home, but she doesn't realize how much I do before she pulls her lazy arse out of bed around noon. I got up around 4:30 this morning and am going to shower and clean after writing this. I got Princess up and off to school with teeth and hair brushed -- so she looks loved-- and pit juice on so she doesn't knock everyone dead when she raises her hand to answer a question. My ambivalence about society makes me one day need to get out of the house and the next not feel like hob-nobbing with the natives. I do different "charitable" things that I am not willing to talk about, but they are no where near what I want to do, what I would do if I could afford the gas -- FLIPPIN' SSA! And my MS dictates all too often what I am able to do day by day, making my volunteering more difficult due to being unable to give set days that I can do anything. And sadly, I have more days where I can't do anything for anybody but try to cook and clean for said herd of ingrates. How did I fall in with this group? Is it true that birds of a feather flock together? Am I a lazy ingrate who can't see a full trash can or an empty toilet paper roll? I think being a bottom feeder limited my options.
Ever have those days where you are feeling overwhelmed by dissatisfaction? I go to bed and sleep even though I feel like I did nothing all day and don't really need the rest but my night meds say otherwise. I get up and survey the house and make a plan to get it back in order so the posse of wild slobs can mess it up again, giving me something to do tomorrow. I'm dissatisfied with the way my marriage ended, disenchanted with men in general and my ability to pick out a good one. I don't think its possible for me to have distemper, but feel like foaming at the mouth and running down the street barking at everything just to have something break up the monotony of my life, even though I know that's not what distemper is. I'm pretty sure I'm not dismembered but with the itchiness of certain parts of my body it is tempting to think about cutting them off. I don't know the word I'm looking for. I just know I gots the ho-hums and could really use a change of pace, something new and different to happen, something out of the ordinary, and I don't mean a luxury vacation, just something of interest to happen. Whether it be getting all the laundry done and being able to see the basement floor (only a pack of wild hogs would think throwing damp laundry on the floor of a basement that gets water in it when it rains is a good idea) or something unexpected to happen while oot and aboot, I'm not picky. But if I don't get out of this rut I may have to do something myself to break up the monotony, and that may not be a pretty thing.