When Your Belief Systems Don't Believe In You

Since my diagnosis I have been having a spiritual crisis. At first I was too angry with God (or the gods, whichever you prefer) to go to church or even talk to him. I know that may not be rational, but that is where I was. I tried to go to church because I thought maybe if I went I would have an epiphany and get over my issues with God. It didn't work. While there I fidgeted, doodled on the cards where you write your name and such on, and thought about all the other things I could be doing and what a waste of hair products and makeup it was for me to go there and think about how soon I could leave. So I gave up on church until I could go for the right reasons. Yesterday Princess said that we needed to start going to church again and I tried to explain to her why I don't go. I feel it is worse to go and not want to be there than to skip it altogether -- whether that is the right answer or not I can't say. I'll let you know after I leave this world, if I can. I even stopped going on Easter and Christmas, to my little sister's horror. She is a C & E church goer and thinks it is sacrilegious to not go on those 2 holidays. I think I would rather stay home and trim my nose hairs than go, so it is better for me to stay home. I felt like my belief systems no longer believed in me and didn't know where to turn for comfort. I was so angry at God and so ashamed for being angry at God, that I didn't feel worthy of approaching him in any way. My aunt, who is deeply religious/spiritual, told me that I may have gotten away from God but he hasn't left me -- a comforting thought, but I still have deep doubts about it.

I was raised in a non-denominational church that we went to every week unless you were on your deathbed and even then my mom would wheel us in regardless of how sick we were. I was first taken to church at 3 weeks of age and attended every week until I was 18. The only way we ever missed church was if you were so ill you puked out your stomach, pooped out your innards, or if your Aunt Flo was so horrible the cramps incapacitated you, and even then it was a crap shoot -- if my mom thought you were still able to make it through, you went. Being raised non-denominational I don't understand the trappings of a lot of religions. We didn't have any certain things that we always did, or rituals or different saints. My husband was raised Catholic and his mom is such a strict Catholic that even though she has been married to a drunk bastard for over 40 years of hell (as she says) she still won't leave him because that would be a sin: marriage is forever. When my husband and I were planning our wedding, she told me I couldn't wear white because I couldn't fool God. I told her that I wasn't trying to fool God because he had been with me over the years and knows I'm not a virgin. She didn't want my husband to marry me because:

1. My parents are divorced. Because I had a say in all that. Why it is held against the children is beyond me. My parents didn't ask us our opinion of what they should do in their marriage. My dad didn't consult us when he walked out on us. She (my ex mother-in-law) felt that my ex husband should have married his ex girlfriend because she "came from a good family," ie her parents are still together. Never mind that her father was unfaithful to her mother for almost the whole duration of their marriage, that is irrelevant. The important thing is that they are still married; not what the marriage is.

2. I'm not Catholic. (Cue the sound of a shrill woman's voice shrieking EEEEEEK!) Time to pray to the patron saint of making heretics see the error of their ways! She can't comprehend that somebody could not be Catholic and still function. She was forever foisting blessed figurines on me and whenever something would happen she would tell me which saint I should pray to. I let my husband keep the figurines because they mean nothing to me and I really didn't want them. She had all these different effigies of saints for different things that she would give to us for different situations; they remind me of baseball cards and I refer to them as "Jesus coasters" because that is what they look like. My ex, who is about as interested in going to church as I am in having a sex change, couldn't fully shake his Catholic upbringing and put a lot of the different coasters in the cars to protect us when driving. I have to admit that I love the idea of a saint for everything and being married to a Catholic has given me more ammunition than I would have thought possible. Whenever something goes wrong for him I ask him if he had his Jesus coaster on him or if he prayed to the patron saint of ______? Reading about the lives of the saints is one of my favorite subjects, it being fascinating stuff. I have nothing against any religion as long as you are not hurting anyone else and it makes you try to better yourself; so if Jesus coasters and saints trading cards make you feel better and try to be a better person, more power to you.

3. My "boy" haircut. This has been a bone of contention for her since she first saw me, and if I had a dollar for every time I have heard about my boy's haircut, I wouldn't have to fight the SSA anymore. No matter what the subject is, she can always work it back around to my boy's haircut. "Well, I thought it would be a problem because you don't like to eat meat and you have a boy's haircut." "It reminds me of the first time I saw you! We went to where you worked and he said, 'There she is' and I was surprised by your boy's haircut." "Its amazing you guys worked out, he never dated anyone with a boy's haircut before." "All his other girlfriends didn't have boy's haircuts; who knew he liked that?" "Thanks for the birthday meal! I'm glad you took me out with your boy's haircut." And so on. For the record, my ex liked my short hair and didn't want me to grow it out -- even an inch -- and I never thought much of it until my ex mother-in-law became obsessed with it.

So where does all this leave me? Disillusioned and still struggling to find a belief system that believes in me. Even after 3.5 years of knowing I have MS, I still get so angry some days that I am not fit to talk to anyone, especially if it requires worship and thanks giving. I try to be thankful for the things in my life because I truly am thankful for a lot of things, but sometimes this anger overwhelms me and I lose sight of the good. In the stages of grief, isn't anger pretty low on the list? Like one of the earlier stages? That makes me wonder how long one should be stuck in one stage, but I refuse to force it. If anger is where I am, so be it. Acceptance, if one can ever truly accept something that is always changing and rarely for the better, is a pipe dream for me. Honestly, I am not sure I will ever get there and I'm not sure I really care. I don't want to become complacent about this. I would rather not be what people expect when they see someone handicapped -- a benign, accepting, not-quite-a-person type being. Maybe I am projecting my own feelings on others. I feel like I get treated that way, but maybe I am being overly sensitive on this. Regardless of which one it is, I intend to continue on this path life gave me, being with my feelings and looking for a belief system that believes in me.

Which Came First, The Crazy Or The MS?

Lately I have been fighting off the urge to drape my lazy, boneless, apathetic self on the couch and not do anything. And my house shows it. It is so messy and horrible I'm embarrassed to admit I live here and am not just visiting. While lounging about like a Greek goddess, I have been pondering the whole Crazy Or MS thing. I know that the vast majority of people with MS will suffer depression at some point in their lives (or the whole point of their lives, in my case) but I have been wondering if maybe my mental disturbances had more to do with whatever causes one to get MS than my own defective brain, or maybe that is the same thing? Maybe I had so many mental problems because my brain was predisposed to MS, or is that just crazy talk? To me it only makes sense that one would have different mental problems (like anxiety, depression, "mood disorders" etcetera) when the fluid on the brain is... different -- not the best word but the best I can come up with at this time. I was reading Weeble Girl's blog http://messystuffalifewithms.blogspot.com/2008/09/birthday-time-and-depression.html and could relate to it. I first contemplated suicide in the 5th grade. I stock piled a bunch of different pills and even cut my wrist, which I still have the scars from. My mom found my pills and took them away, so I started drinking the cough syrup, which was then taken away too. I dabbled with anorexia, but didn't like the light-headedness or the sick feeling of being too hungry. I couldn't do bulimia because I never throw up and to try and make myself would be way too much effort, having a very weak gag reflex. The main difference between her story and mine is that my family, while knowing I had issues, thought they were of no great consequence and that I was just going through a phase or doing it for attention (duh, isn't that the ultimate cry for help?). At the time my family was struggling financially and my parents' marriage, while never good, was at an all time low point. Our family life was so bad nobody had time to notice that I was having major issues because everybody was struggling. I learned to keep my feelings to myself and not talk about my problems and never, under any circumstances, trust anybody else. They had shown me that they either could not or would not be able to help me. I don't fault my parents though. My dad made it clear that he never wanted kids so we were our mother's problem, which has severely influenced my opinion of men. My mother was working 2 jobs, trying to keep our heads above water and we even had to get food from the church a few times because we were so poor. I have a very hard time letting anyone in or even close to me, I learned to rely only on myself. That is the major difference between Weeble Girl and I: she wanted closeness and I am scared of intimacy, and I mean that on every level. One of the results of all this is that I am not as kind as I would like to be. I tend to be more hard hearted than the average rock pile and my emotions are not easily touched. That has some pros and cons. I am not easily hurt by other people and do not give my emotions easily . A major con is that I can't give much of myself and feel like I'm missing out by being so reticent.

I hate being so serious and telling so much about myself, but I am trying to leave my "comfort zone" more often and challenge myself in the hopes of personal growth. I hate personal growth -- it can be so painful and uncomfortable. But I also hate being mired down by my own limitations and want to break out of the prison of my own making. So to that end, I am going Halloween shopping with Princess today in an effort to get out of the house more and mingle with the natives. Mingling with the natives is hard for me. I feel so insecure about the way I walk and etcetera... but here is where leaving my comfort zone may behoove me.

Gross Out

*Author's Note: What is wrong with me today? I feel like a blow up doll that someone left the air-blow-up-nozzle-thingy open on and all my air drained out. Is there an epidemic of lethargy sweeping the nation or just my house? We are all lazy and sprawled out like we are boneless. Ugh, trying to muster up energy to do anything but can't seem to. Princess claims she is tired and lazy but she hasn't stopped talking since her eyes popped open this morning; think her constant chatter is adding to my lethargy -- can't get out from under this mountain of words.


You guys crack me up! I have a very high thresh hold for what grosses me out -- it takes a lot. Precious little will truly make my innards churn, which is why I am always the one to clean up animal/kid vomit, or anything else others gag over. Even shock sites like rotten.com and others of that ilk do nothing for me. It doesn't bother me, except for the empathy I feel for those who suffered such a hideous fate. In fact, the other day my little sister was looking at rotten.com and came across a picture of a man who died in his bathtub because he put his heater on the edge of the tub, which then fell into the tub electrocuting him and they did not find him until quite awhile later, by which time he had become a sort of human soup. I found it funny -- not him dying that way, even though its hard to feel too much sympathy for someone who would put a heater on the tub -- but because of the whole soup thing and my little sister's horror at it. I tried not to laugh, but every time I thought about it I would start to snicker and my little sister would become grossed out all over again. I know karma is going to off me in a hideous fashion that will give amusement to the other sickos out there like me, and I am okay with that. I know I deserve it, so I hope it gives a good laugh to someone. That's why I don't go to those sites, because, believe it or not, it does make me feel bad to laugh at that stuff, but I cannot find it in me to feel pity for someone who died because of their own stupidity -- like trying to steal cable and getting fried by the power lines. Did nothing go off in your head that said, "this may not be a good idea, messing with these power lines?" I do stupid stuff all the time, but even I know better than that. My ex husband was so easily grossed out that it caused so much merriment in me. The man had the lowest gross out thresh hold of anyone I've ever known. So here are a few of my favorite things that will make him gag and/or throw up if anyone mentions them:

The Ice Bucket
He works for UPRR and stays in a lot of hotels/motels. One time a guy he was working with brought some food from home that he insisted on sharing with the other guys in the gang. He put the food (I think is was scalloped ham and potatoes) in an ice bucket to heat it up and my ex husband had to choke down some to be polite. He can't even talk about it without gagging so hard his eyes water because he is scandalized that someone would eat out of an ice bucket. All he can say about it, without throwing up, is "do you know what people do in ice buckets?!" I don't know about you but the only thing I have ever done with an ice bucket is get ice. But he is convinced that there were manifold hideous, gross things done in that ice bucket that makes him sick to even think that he ate something out of it. When I am feeling irritable with him I will ask him what people do with ice buckets just to watch his reaction. It is a source of endless fun.

The Booger.
This one has to be my favorite. Princess has bunk beds and her little brother sometimes spends the night. He is now 7 and getting over his obsession with his boogers, but for awhile there we had to keep a sharp eye on him to remind him to get a Kleenex. I don't think that is anything unusual, most kids go through the booger stage, I will only gag when they eat them -- YUCK!! So one day my ex was in Princess's room to check on how well she cleaned it up, when he noticed a booger on the wall by the bed her little brother sleeps in. Her little brother, Pumpkin, was about 5 at the time and at the height of his booger obsession. The booger was nothing horrible, not anything but a small little booger -- I've seen much worse from my dog -- but my ex reacted like it was the most gross, horrible, nasty booger ever. He ran out of the room to tell me I needed to clean it off the wall but couldn't get all the words out. He was so grossed out that he threw up in the drain in the basement laundry room -- all over a little booger! It was right after Thanksgiving and he had had a turkey sandwich for lunch, which he was bitterly disappointed to lose to the drain in the basement. He can't even talk about that booger without getting sick at the memory. What a baby! You would never know that he can gut a deer and eat a sandwich at the same time with the way he acts -- and that makes me sick.

The Messy House.
This was the first story he told me that he gagged his whole way through and I laughed until I cried about. One of his friends was dating a girl that needed help moving some of the larger things in her house. Having a truck can be a huge disadvantage at such times -- everyone wants you to help. He went to help move her washer and dryer, but the house was such a mess and smelled so bad (according to him) that he couldn't go into the house without dry heaving. I'm sure she was loving him for that, but I have no pity for her -- clean up your damn house if you don't want to sicken people! He had to wrap a towel around his head to go into her house! That was the only way he could help them move anything. And the towel was one he had in his truck for cleaning it (the truck). I tried to get him to tell me what was so messy and smelly that he had to wrap his head up to go into the house, but he can't even talk about it. The best I have been able to gather is that she had crap everywhere and it smelled like dirty diapers and rotten cat boxes. He can't talk about it beyond that. I have seen some darn messy houses before, but I can't imagine one so bad as he claims that one was.

I probably shouldn't laugh at what makes others sick because the things that make me sick are probably nothing to others. Like anything with too many or not enough legs makes me SICK! There was a strange, hairy centipede in the bathroom the other day and even though my bladder was in distress, I still had to kill it with my little sister's hairspray before I could bare my bottom to it and tempt it to attack. I can't let the animals eat off of any dishes because then I will never touch that dish again and am paranoid that I may inadvertently get that one and eat off of it. It doesn't matter if it went through the dishwasher a million times, it will always be tainted to me. Strange the things people find disgusting...

Clean Cat Boxes, Stinky Breath

*Author's Note II: Your comments amused me so much I laughed so hard I choked. Having put my lungs back in my body, I thought maybe I should add that growing up with a mom who has always worked in the medical field in one capacity or another has made me rather thick skinned to petty things like poop, and boogers, and blood or anything else gross you can think of. Eating dinner she will tell us a story about some old guy's diarrhea, or someone being so constipated they needed.... well, never mind what they needed. Its pretty gross. So I enjoy a good bodily-function-related story as much as a teenage boy does -- farts will always make me laugh, sadly. *Sigh* Sometimes I wish I was more of a lady, but then somebody will toot and I lose it.

*Author's Note: I posted this on my other blog too, but felt it needed to be shared with more than just my family. I have a blog brewing right now, it may be ready later today or maybe tomorrow. But until then, I hope the following does not happen to you.

I love having help around the house. It gives me warm fuzzies that I can't even begin to put words to. Like yesterday, my little sister ran the vacuum and folded laundry while I was napping (on the couch but slept through it as always). Her bf/f took out the trash and put some of his stuff around the house away. It was GREAT! But I don't really need help cleaning the cat boxes; I have it down to a science and can clean those things in a few minutes flat. Apparently the little dog didn't get the memo. This was mostly my own fault: I forgot to put the kid gate back up to block the basement from the dogs. My dog, old and set in his ways, doesn't venture into the basement. He is not overly fond of stairs and knows that it is usually blocked off so any efforts to get down there are futile. Besides, there is a couch to hold down and that is more important that what the cats are doing down there. But not the new little dog. He is such a pot-bellied pig he scrounges for food constantly. We think his food issues stem from his puppy hood. He and his litter mates were kept in a chicken wire cage and were rescued by the Humane Society. He has scars from where the chicken wire rubbed up against him and we think food was scarce and that is why he is so aggressive about food. So me forgetting the kid gate + full cat boxes that the dogs see as horderves = one little dog with the SH*TTIEST breath you can imagine. Literally. My little sister came home from work last night and was greeted at the door by the dogs. I was laying in bed reading (the new Eragon; I'm an addict) when she came home. As soon as she was in the door she barked out, "What smells like CAT SH*T in here?!" I figured the cat boxes must be worse than usual, even though it is not time to change them. She brought home Taco Bell, which is the only thing that could possibly pry my butt out of bed at that time, so I went to scavenge off of her. While we were sitting at the table, the two dogs were panting at our feet; panting the most horrendous odor of cat turds that almost made me lose my appetite. We sniffed towards the big dog; just regular dog breath. We sniffed towards the little dog and he panted cat poop in our faces, just about knocking us out and making us vomit at the same time. My little sister asked if I had put the kid gate back up after doing laundry, and we soon discovered why the little dog snacked out of the cat boxes like they were a delicious buffet. I stuffed his butt in his kennel -- no way he was sleeping in my bed with that breath! -- and felt like I needed a hot shower and a tub full of bleach. That is one chore I do not want help with and I hope to never smell anything that horrible ever again!

A Story

Yesterday was almost a black day for me. Almost. It started out in the usual way: pop awake at 5am (I only have 2 states, awake or asleep), stumble over the obstacle course of pets and stuff others who can lift their legs leave lying around to trip those of us who are not so blessed, let the dogs out and start my coffee. After brushing my teeth, taking my handful of morning meds, and sitting down with my coffee to play some text twist, Princess stumbled out to take her chances with the obstacle course and informed me that my dog, my precious baby, was having a seizure. That is nothing out of the ordinary, he has been having them since he was a puppy so we know how to deal with them: keep him safe and let it run its course. He is now 7.5 years old and getting very white, which saddens me but I know the seizures take their toll on those who suffer from them. Anyhoo, he kept seizing from 5am until almost 7am. He would start to look like he was coming out of it, then another would start up. I was scared to death of losing him because I know what status epilepticus means, and it is nothing good. I wanted Princess out of the house before I called the vet because if he had to be put down I didn't want to ruin her day at school. I sent her to my older sister's house a little early (she living just down the street from us and works at the elementary school) and called the vet. I got my little sister and her bf/f up, which is no small feat, they being unable to get up anytime before noon without turning into dust, and had them help me get my dog into my truck to take to the vets. I was crying and sobbing with the abandon of a child; my sinuses and eyes were working over time so that I was soaking one Kleenex after another. The vet put some diazapam up his... rectum as a last ditch effort to see if we could bring him out of it or if he needed to be put down. He came out of it, thank all the gods, and the vet gave me some anti-seizure meds for the future and some diazapam and a syringe to put that stuff up his butt if it happens again, which I hope it does not, I am not too hip on squirting something up his behind but will do it if need be. The vet talked and talked and gave me advice on what to feed him, how to inject the stuff up his rear, the importance of making sure he gets his anti-seizure meds every 12 hours and so on. We were there for over an hour and a half and near the end my nose was feeling itchy. I scratched my nose and realized I had a big, crusty booger stuck to the outside of my nostril that had been there long enough to dry out and become itchy. How gross. I couldn't help but be amused by what the vet must have been thinking the whole time he was talking to me and looking at that thing. If I have to walk around with boogers all over my face to have a little more time with my baby, I will do it with a sign around my neck that says, "I wipe my nose with my sleeve" and a big smile on my face. When I thought for sure that he was leaving me, I kept praying that his spirit would not leave me and that brings me to the second part of my usual long-winded story.

Before I launch into this story I have to give a little background information for it to all make sense. I don't believe in ghosts or aliens or the Ouija board or things that go bump in the night. I believe that there are things in this world that can't be explained, and that there may be some ghosts out there, but I think 99.9999999% of it is people seeing what they want to see. When something thumps in the night or something happens that I can't explain, I don't assume it is a ghost, I assume it is something practical like the pets, the house settling, or the heating ducts, something along those lines. I am a literal kind of girl and unless a ghost hit me upside the head with its chains, I probably wouldn't believe there was one there, which makes the following all the more perplexing.

The first time I did the steroids, and every other time, I never stay in the hospital for the whole 5 days. I do it outpatient; that was our compromise for me consenting to do them. My neurologist won't budge on how many days I have to do it (I was arguing for less, he wouldn't come down any) so every day I checked in and paced for 6 hours until they sprung me. If they tried to keep me I would probably claw my way out of there. I don't know how people do it! They rev me up to the point that I would have to be straight jacketed to keep from running away -- and even then I would probably run anyway. It was the second day of my doing the steroids and it fell on a weekend so the outpatient center was closed. They put me in ICU because that was the only available bed at that time. The ICU nurses were not used to having a patient not needing intensive care so they left me alone for the most part (to my pleasure. I hate being watched too closely, like an animal in a cage). I was lying in bed, keeping company with my horrible heartburn, pondering the whole "I-have-MS" thing (being newly diagnosed and still reeling) when I saw come through the door our family's dog when I was growing up. This dog died, practically in my arms, when I was in the 10th grade. He was a mutt, a mix of, what we could only guess at, German Shepard and Saint Bernard, along with others too, but those were the main ones. I hadn't really thought about him in a long time, so I was pleasantly surprised to see him come in. I had forgotten how big he was, his very fluffy, big tail, the swayed back with a large black patch almost like a saddle on it. He came over to the bed, I moved my legs over and he climbed up and laid down with me. I figured he was there for a reason and feeling very safe, I decided to take a nap with him. I told my mom this story and she cried. I don't have any close relatives that could have come "visited" me, so she thinks he was sent to comfort me and show me that he is watching over us still. And as much as I am a disbeliever in such things, I can't see any other explanation other than him coming to show me that he was still with us, especially at a time when I needed it the most. Funny thing is, the day I went "crazy" and cut my wrists, I was waiting for him to come take me home. When he didn't show, I knew it was wrong and called my mom. So chalk this up to whatever you would like. I can't even pretend to understand it. But I now keep an old picture of him in my room to remind me that I am not alone in all this.

Writer's Block

What is wrong with me? I can't seem to get on here and get a coherent post to save my rotten pelt right now. I have different ideas rattling around my head, but nothing at the stage where I have thought about it enough to really talk about it. The thing most on my mind right now is my little sister's plans for her marriage in about a year and her desire for me to be the matron-of-dishonor. And I mean dishonor. I am so soured towards marriage that I cannot muster up any enthusiasm for somebody planning to take such a rash and careless move. This will be her second marriage and I am shocked that she didn't learn her lesson the first time. True, this guy is a complete 180 from her ex husband, but I still do not trust marriage. Not one bit. She tried to talk me into going to a bridal expo, but even the mention of it made me break out in hives and want to go back to bed with a hot toddy and an ice pack on my head. She has dragged me to bridal stores where the sight of all that happily-ever-after-fairy-tale crap made me want to go on a rampage and picket outside the store. I had to fight the urge to projectile vomit split pea soup all over the mountains of tulle and fluff in Exorcist style. They tried to stuff me into some bride's maids dresses, but I was reluctant (to say the least) to tell them that I needed the bottom-heavy-gourd size. And I really hate those strapless bra things they have you wear to try that stuff on. I tried to play nice and helped her into different dresses, even took a bajillion pictures for her to ooh and ahh over later, but I had to put my foot down about trying on too many bride's maids dresses. She got a bunch of different catalogs with different bride's maids dresses that she has been pouring over and trying to get me interested in. Frankly, they all look about the same to me and I do not care about a ribbon over here instead of over there, so I told her to pick what she liked and I will wear it. My only request was that I cannot wear heels so choose accordingly. Me with heels on is like a pig on ice -- with stilettos on. It ain't pretty and is only good for a laugh. Not only do we have bride's maid catalogs, but the other day she got a catalog all about invitations. This thing is THICK, probably a good 100 pages or more and with several invitation styles on each page. She went through and circled the ones she liked! This patience from a woman who only cleans her room when I threaten bad things to her person. She tried to get my opinion on invitations, but I cannot care about all that nit-picky stuff. Pick one and be done with it! Who cares if the hearts are embossed or have your initials or are concave with only the last name initial?! And don't get me started on the cake or what colors she should go with. I'm sick to death of pondering whether these colors or those colors will go best with whatever else she has planned. I'm not trying to rain on her parade, but I am still hurting over the demise of my own marriage so it is hard to be thrilled about these things. To her credit, she is aware of this and tries to be sensitive when she can. But then she see mountains of tulle and fluff and all rational thoughts leave her head and are replaced with fairy tale wedding crap.

The Tide Has Turned

*Update: I am going to take a half dose of the antibiotics on days I have to leave the house and have committed myself to the full dose on days I don't have to go anywhere. I wish I could stop them, but being raised by a nurse I can't do it -- she would (as the old cliche goes) poop twice and die. Come back from the dead and poop twice and die again. So to spare her the trouble I am just going to suck it up and do the right thing.

Thank the gods and all false idols for that! I was getting tired of the foul stench of low tide that came with my rotten mood. My little sister and I made up. I apologized for being a warty rag ass and she apologized for treating me like a servant and agreed to try to pay me back on a more regular basis. Her bf/f didn't know what to do when we were fighting; he didn't realize that she and I have been fighting since she was 2 years old, as my mother says and she should know, so we know how to fight and make up. He was scared of me, like the wrong word or look would bring my wrath down on him and would barely make eye contact with me. He is a very passive person and not at all as vocal as my sisters and I. I'm not a silent bitch. When I am mad I make no bones about it -- if you piss me off I say so. There is no gray area there with me. I told him so, so that he would know where he stands with me because I will tell him when his life may be in danger. A few other highlights from my boring life to make you feel better about yours:

*I can't take these antibiotics anymore. I usually am very strict about taking the full prescription of antibiotics but these are killing me. I think the sickness was preferable to this. I know the dangers of not taking all the medicine, but this is ripping up my guts. We were running around yesterday and had to go order my little sister's birthday cake (tomorrow being her 30th and she is boo-hooing about it. Being 34, I have no pity. The 30's are not that bad.). I skidded into Walmart's parking lot on two wheels, raced out of the car before I could even turn it off and had to push women and children out of my way to get to the restroom. It used to always annoy me that the restrooms at Walmart smelled like old lady poo all the time, and I had/have a theory that they go to Walmart to pinch one off because they don't want to stink up their own houses. Well, yesterday I had to join the ranks of old-ladies-stinking-up-Walmart-so-their-own-houses-don't-stink. Although mine was not premeditated. If I had gotten pulled over I would have had to let loose on the side of the road and would have gladly taken my ticket for indecent exposure over doing it in my car. I have too many things to do today and do not feel like strapping a bucket to my ass to get them done, that and they give me a horrible taste in my mouth and indigestion. I will take the risks of not finishing my antibiotics even though my mom will have a fit. Its just not worth it.

*I am so glad Denver Refashionista has gotten some meds for her depression and anxiety. Everyone in my family (except my mother) has a problem with depression. My sisters' get the kind of depression that makes them lethargic and not want to get out of bed. My depression only operates with anxiety so I can't relate to the lethargic kind. I get horrible panic attacks that make life torture, and unless you have had one, it is hard to imagine the sheer terror of one. My arms could fall off, but if I'm having a panic attack I wouldn't notice. I never knew there were meds for such things and suffered with them for years before I finally broke down and saw a doctor -- after not sleeping or eating for almost a week. People can say whatever they want to say about these meds being "brain-washing" and such, but anyone who knows me knows I am not brain washed in any way. These meds took away the overwhelming anxiety and depression so I could live again without irrational fears ruling my life. I could sing the praises of Paxil and Xanax all day and never get tired of it. And I am not an addict either (I've heard that one too -- that if you take Xanax you will become an addict and end up giving b.j.s to get more.). I have been taking the same dose of Xanax for almost 7 years and so far I haven't had to suck d*ck for more.

*I've been adopted by my little sister's/Princess's dog. This really has nothing to do with MS or anything like that, but it is currently a hot topic in this house. I didn't want another dog. I have a dog. I have a 7.5 year old yellow lab that is my baby. He has grand mal seizures that he has had since a tiny puppy and I don't leave him with anyone without a list of how to handle them and how to treat him. I have never hit him, at most I may push his butt with my foot when he is really naughty, but that is rare. When we were doing foster care the kids could climb on him and pull his fur and he would only move away when it was too much, but if a strange man comes around he will growl and not let them near me. He is so protective of me that one time when a man was walking down our street, he sat on me, pinning me down, until the guy was gone. So I am perfectly content with my baby who is so spoiled he cannot lay his precious golden pelt on the floor but must be on the furniture or in a bed. My little sister/Princess wanted a dog like that for themselves, a dog to sleep in their beds at night and be dedicated to them, so they got a corgi for themselves. I prefer big dogs; little dogs aren't really my thing, but Princess loves corgies so that is what they got. They named him Widget, which I wouldn't have picked out, but, hey its not my dog. He sleeps in my bed and protects my chastity all night -- he won't let anything on my bed when I'm in there. Where ever I go, there he is, under foot. And God forbid I close the bathroom door to shower or use the toilet, he will be at the door scratching and whining. If someone tries to take him off my bed he growls at them and comes running back to me as soon as they let him go. I really did not want 2 dogs but now I have a guardian to make sure I keep to my vow of celibacy -- not sure how thrilled I am about that. I decided that since he adopted me, he needs a better name. Because he has such short little legs and is such a little sh*t still (only a few months old. We are still working on making him mind) I have renamed him Midget Poo Poo Platter. It was originally Midget Sh*t Head, but Princess can't say sh*t, so I changed it. I'm glad animals like me, but damn, sometimes I feel like the pied piper who gets followed around by a herd of pets.

That is all that is going on with me, but it is preferable to being in such a foul mood I pollute everyone and everything around me. Today my goal is to get my errands done and get to others' blogs to see what they are up to, hopefully your lives are at high tide. Oh, I almost forgot, I am thrilled that Ms. Brain Cheese is back (I originally typed Brian -- big difference). What a long, dry, serious time it is without her. I need her humor and unique outlook to spice up my dull life!

I Need A Vacation From Myself

I don't know what my problem is. If it was at all physically, spiritually, functionally, horizontally or vertically possible I would think I am PMSing. But its not. (Total hysterectomy almost 7 years ago and it has been one of the biggest blessings in my unblessed life.) I can feel the glower on my face and thank the patron saint of urban myths that my face can't freeze this way. I am feeling extremely crabby, bitchy, angry and any other word you can think of for it. Yesterday, while running errands, a truck with a bunch of guys slowly poked through an intersection that I was waiting to turn at. They yelled something at me and waved, something positive, but I was in no mood for admiration. My window was down so I stuck my head out and yelled, "Hurry the hell up!" at them. They took no notice, just kept ogling as they crawled through the intersection. I bet if I had yelled, "I'm broke, got a fat ass and my antibiotics are giving me explosive diarrhea!" at them they would have floored it. Alas, I missed my chance by being polite. Please allow me to vent for a minute, maybe it will make me feel better if I sum up what is bothering me.

This is my life?!
I know I mentioned this yesterday, but it is still hanging over my head like a dark cloud of acid rain. The only good thing about this is that I know it is not forever. I do have some plans in the works, I am just at a stagnant point right now, waiting for some things to get going. In the mean time I have been amusing myself by sticking faces on everything around the house. And I mean everything: the phone, the remote, the stapler, the flower pots, the clocks. They all have stupid faces and even some googly eyes mixed in there. It cheers me to see so many happy faces and others annoyance that whatever they go to use has a face on it. I have even been putting googly eyes on pictures around the house so everyone looks shocked/surprised in the photos. Stupid, immature, ridiculous? Heck yes, but fun none the less.

I lent my truck for others to move some stuff and it is a MESS.
I know that sounds petty, but when I borrow something from someone I treat it like gold. I don't leave half full cups in it to leak and leave sticky messes everywhere. I don't throw my trash on the floor especially when they have a trash bag in the car for such things. I don't mess with the settings on the dashboard, like the brightness of the lights or override the automatic headlights so that they have to reset everything. And I certainly do not scratch and dent the side of it. They moved my little sister's bf/f's motorcycle here and rammed it in, leaving a nice ripped up spot that dug up the paint and even scratched up the metal underneath. It just about plucked my eyeballs from my head when I saw that and I made a mental note to not lend them my truck ever again.

My little sister and I are fighting.
I know I started this one. I lost my patience with their extreme slovenliness and went into their room one morning and ripped the covers off of them (while praying they weren't sleeping naked) and made them get up and clean their crap up. Okay, maybe that was a tad too extreme. But when my house gets too messy I get a really bad feeling, like I can't move or don't even have room to breathe. I call it chaffing when it gets really bad, and I am not always the most rational when I start feeling that way. She says she is tired of me bossing her around (but I'm the big sister!) and telling her what to do. I say, "too damn bad! If you don't want me bossing you around clean up your sh*t around the house and quit being so lazy!" That and she is really behind in paying me back for her half of the rent each month. Being sisters it disintegrated into "that's mine, you can't use it! I bought that, you can't eat it! This is my room, you can't come in here. Your head is over the line!" and so on.

I need my space.
This may be the biggest factor to my rotten mood. My husband works for UPRR so he was gone 60% of the time. I had that time to myself. The house to myself, my time to myself, no one to worry about but myself, quiet when I wanted it, able to go and do as I please in that time. Now there is always some one here, always others around, no where to go to get away and I am feeling hemmed in. Like I can't get any time to just think my thinks.

Okay, enough bitching. I am going to launch myself into public today, which may not be good for them but hopefully will help combat this foul mood that is polluting everything around me like a noxious gas. I think if I go to Target (my favorite store) and look at pink fluffy stuff it will make me feel better. If that doesn't work I am going to get lost in a bookstore, that never fails to cheer me up.

Quick Note

*Update: I forgot to mention that the reason my little sister is holding on to me is because I am sitting on the very edge of that bench, almost falling off. That picture was taken at my Grandmother's 90th birthday party, 2 years ago, which is why I am wearing Uggs. Except for the moon face, I look pretty much the same. I keep meaning to get a more recent picture of myself but never seem to be ready for picture day.

I should have said this before but I am the one with a hat on, in black in the picture. I thought the stiff way I am sitting and looking so uncomfortable would give it away. I had just done the steroids about a month before that picture, so I still have the "moon face" from them, but I don't have too many recent pictures that wouldn't sizzle the hair off your heads if I posted them. I have had this strange body dismorphia almost from the very beginning of my MS. I have a hard time getting my body in the "right" position anymore. I can't figure out how I used to sit and it drives me crazy because I end up looking like I sat on a poker. The other one is my little sister and she hates that picture -- she says we look like lovers, not sisters. But this is my blog not her's.

Blues Ballad

Ever have one of those days where if you were left to your own devices you might do something bad to yourself? Unfortunately I have them all too often. Fortunately I am rarely ever all alone so I never have an opportunity to act on those urges. And when I do get some time alone I have to get rid of other urges, if you know what I mean, wink wick nudge nudge. (I don't care to have anyone think that I am running power tools in my bedroom.) Yesterday I had an attack of the this-is-my-life-what-if-it-never-gets-any-better's. I looked around at my sub-par house, crammed to the gills with junk, little messes everywhere that only I seem to see, and realized that my job is being the house gimp. I shook my fist over my empty wallet that has no hope of having anything in it anytime soon and fumed over the slowness of the SSA, it being an estimated 18-24 months to hear about my appeal and even then I will probably only get another court date that will take another 2 years to get to. I was witness to my little sister and her fiance's tittering lovey-dovey crap that made me realize I am probably going to be single for a llloooonnnnnggggg time, which doesn't usually bother me too much, but sometimes I wouldn't mind someone in my life. I don't see anyway to remedy that problem as I go to bed at 10 and never do anything where I would meet anyone. I also am not sure of what my market value would be as I have no job, no income, in the process of a divorce, still fighting the SSA and we have a no-strange-boys-in-the-house policy here, so they can't come over. The antibiotics are wreaking havoc on my poor guts so that I feel chained to a bathroom and I still have 7 more days of them. I swear I lost some entrails the other day and I threatened my guts with Pepto Bismal if they didn't knock it off. So I think there may be a (tentative) peace treaty there for now. My little sister is convinced that the large hadron collider is going to be the end of the world so we ate at a buffet yesterday that was so good I blew my diet sky high and am dreading trying to get into my jeans today. (I rarely eat out and try to eat healthy so eating at a buffet is a huge thing for me.) I'm feeling cross, like I could use a man (EEEEEEKKK!), that there has to be more to life than this, and that I may very well lose my intestines if things don't get better. For some reason I kind of want to keep my intestines; I'm rather attached to them. I wanted to go run around yesterday but my little sister and her man needed to go do stuff too, so we carpooled to save gas. I was subjected to the most maudlin, depressing country music that made me feel like I needed to get a banjo and twang out a song about my own blues.

My house is a mess
(da da da da)
I'm gettin' lonely, I must confess.
(da da da da)
Ain't got no money to my name
(da da da da)
Cuz the SSA keeps playin' their game.
I got poor-as-dirt-no-man-for-meeeeee blues!

I could go into more verses but I don't want to spread the maudlin, sappy blues and make you want to play the spoons along with my song. Although that would be one hot band if we did. Hmmm, wonder what venues would want an act that has to end by 10 because that is my bedtime.

Back In The Saddle Again

Being somewhat back on my feet, I have the unparalleled pleasure of enjoying the feeling of returning health after a hideous sickness that had me coughing up things I didn't know if I should name or give a proper burial in the back yard to. (By the way, it is so nice to be able to say anything and know that I will not be recognized on the street as the woman who pisses her pants and admits she has to have diflucan to take antibiotics. As the popular saying goes, no shame in my game!) A comment that was left for me amused me very much:

"Forgive me for laughing....you have put it so well, my dear.Feel better soon. But not too soon. you're quite amusing when you're sick"

It made me think of when I had a total hysterectomy and I told my then-husband that he was lucky to never have to deal with a woman with PMS again. And he said almost the same thing as that quote, "I don't know about that; you're pretty funny when you're pissed off." How many men would kick his round butt for such a comment, I wonder?

One of the good things about being sick and unable/unwilling to budge from this chair was the opportunity to visit other MS blogs and see what I was missing. And missing I was! I have found Weeble Girl (http://messystuffalifewithms.blogspot.com/)to be an unending source of originality and humor -- so much so that I am ashamed I didn't add her blog sooner. In all seriousness, I can't stand too much seriousness. I can't have this disease and not laugh at my own ridiculousness from it. I have taken the poem

The whole thing's daft
I don't know why.
You have to laugh
Or else you'll cry.

To be my motto. If I couldn't make fun of myself I would probably shrivel up and bury myself with my goobers in the back yard. I don't write deep thoughts or moving accounts of having MS, it is just not my forte, but I enjoy that perspective from time to time. It reminds me to not be so serious and laugh when I do something dumb. Like the other day at Walmart I closed my bad leg in the door of the car, in a handicapped parking space, surrounded by plenty of spectators who ogled my brilliant move. I thought not having shaved my legs for 5 days (can't really care about such things when sick) the hair would give my legs a little more cushion for such a thing. I was WRONG! It hurt like hell, I yelped and whined like a little girl and peeled out of my handicapped parking space on two wheels.

I get irritated when people treat me like I'm infirm in mind because I'm infirm in body, and I say things that embarrass my little sister when that happens. (Like when they talk loud and slow to me I have to inform them I have MS and my hearing is not gone due to massive earwax buildup. Leaving the store my little sister asked me if I had to say that.) When I have to use a motorized cart to do my grocery shopping, I enjoy flooring it and racing through the store, I even let the kids ride on it with me.

Early on I had to take an inventory of all the baggage I carry around and see what could get tossed aside. I threw out the pride that hinders me from using the assistive devices I need. I threw away all worries about what people think of me. And I had to ditch my desire to wear matching socks -- I can never find 2 of the same so I wear unmatching socks all the time. I ramble too much, but I didn't find that to be too heavy of a load, so I kept it. My lack of shyness I kept too because I enjoy returning peoples' smiles in public or having a small chat with someone who may be lonely and just wants someone to talk to. I also kept my willingness to say things others' may not want to talk about. Yes, it draws criticism from time to time, but I haven't found that to be too burdensome.

Not Jealous

I've been up since 4 this morning. I couldn't sleep one minute more, and believe me I tried. I woke up at 3 but refused to let myself get up until 4 -- that is the earliest I will get out of bed. I had too many things rolling around in my head and my bed to sleep any longer. The dogs were hogging the majority of my bed, leaving me only a sliver on the edge to dangle off of, I was hot, my mouth tastes terrible from the antibiotics (reminiscent of the dreaded "steroid mouth"), I had a song from Sunday school stuck in my head, and I couldn't stop thinking of Denver Refashionista. In between singing to myself, "1 2 3, Jesus loves me, 1 2 he loves you too..." I thought of what she is going through and how not jealous I am of those going through the hideous early stages of coping after finding out you have MS. That first year was hell, and I can't say it got much better until a ways into my second year. Ugh, the horror of the first anniversary -- how does one "celebrate" that? I am glad she is looking into getting help, and the comments everyone left for her were really good. I was going to suggest employee assistance for mental health care, that is how I found my therapist, whom I adore. I tried so hard that first year to be brave and put up a happy/accepting-of-my-fate front that backfired on me. It was a hard painful lesson that taught me to not pretend for anyone or anything. While cooling my heels in the loony bin, coloring fuzzy posters with non-toxic markers, and painting wooden trains and animals, I had plenty of time to realize I was doing no one -- least of all myself -- a favor by pretending to be peachy keen, jellybean. That was when I did one of my favorite things: I took a solemn vow that I would never pretend to be anything I am not. While digging through the pile of non-toxic paints to paint yet another cat, a big, fat, hideous, red thing propositioned me.

Red Thing: I tink you awe weawy cute. Would you have thex wiff me? (I think you are really cute. Would you have sex with me?)
Me: No. Never.
Red Thing: Newer? (Never?)
Me: (laughing) NEVER!!

I went back to painting my wood and he moved on to the next female he could find. It was rumored that he had molested a child (he was obviously very slow with major mental issues) but no one would ask him because we didn't want to have to kill him and spend the rest of our days locked up.

So what is the point of all this? Not really sure, but I think it was to be with your emotions, don't try to hide/pretend/repress how you are feeling and get help if you need it. If I had I wouldn't have such lovely scars on my wrists, which lucky (??) for me the razor blades were rusty and not so sharp. Besides, DR has a really cool name, which I am very jealous of, having just a run-of-the-mill name, is strikingly beautiful, again I am jealous, and does that really cool stuff with old clothes. My mom was really impressed with that, she is into sewing and embroidery and has embroidered things on clothes, towels, blankets, and anything else that would let her, for me. I have my initials on everything except my bloomers and she would probably do those if I wanted her to. You are part of a group that is willing to help out our brethren in anyway we can, if only to talk to and relate to. A pretty great group from what I have seen so far. So, please, lean on any one of us (hope it is safe to talk for us all) as you need to, and that goes for anyone struggling with MS. You can always count on me to be here, I may not have any earth shattering advice to dole out, but I am such a bumbling iijt that it may make you feel better to not have my life.

Raising The White Flag

Update: To my infinite surprise I do not have the black plague, tuberculosis, small pox, the great pox, or the clap. I merely have a sinus infection gone awry. Funny how something so simple can be so miserable. Almost anticlimactic. And the doctor strong armed me into promising to get a flu shot every year from now on, thus ruining my plans to die young as a martyr. Will now have to start a new plan for canonization.



I had to do it. It was horrible. It wore me down until I had to give in. After 5 days of being sick I had to call the doctor. Oh the shame! How it burns! I HATE HATE HATE doctors and hospitals and yucky meds that have to be an ungodly strength because of the immunosuppressant drugs I'm on that leave a terrible taste in my mouth and make me pray to the patron saint of yeast infection medicines (sorry, any boys out there reading this, but as a woman it is just a fact of life). I have been practicing my cough for 5 long days with no improvement (who said practice makes perfect? They need to wrap my diseased pillowcase around their head). My chest feels tight and my back and chest hurt from coughing. My house is about to fall down around us because everybody is under the weather and even if the others were not they wouldn't clean a darn thing, being not humans but more akin to swine. Oh, the cat boxes that are releasing their putrid odors with as much gusto as is possible for them, so that when you first walk into the house you can't miss that we have 4 cats whose poo poo places have not yet been cleaned this week. My trash that makes me think of the Shel Siverstein poem about Sylvia Stout Would Not Take The Garbage Out, but to make it fit better it would have to be something like, Blindbeard's Stout Roommates Won't Take The Heaping, Overflowing, Rancid Garbage Out (They Might Burn A Calorie If They Did). The groceries that are running low, not that any of us have much of an appetite, but the things we do want to eat, such as crackers, juice, bullion cubes, etcetera, are becoming a hot commodity. Laundry stacked up so high in the bathroom it is embarrassing me to even look at it. The bloomers on top of towels on top of brassieres on top of rotten sick clothes... The dishes that long since grew a beautiful, thick, furry, green, slimy mold (okay, maybe I am exaggerating there -- maybe -- I do run the dishwasher almost everyday). The dust that is so thick the pets are writing, "Start free feeding me, bitches!" in it. I need to return books to the library, get some new books, get gas in my car, wash my car, get some things needed around the house like mouthwash (somebody has been using mine! Who would be that dumb?!) and hand soap. We are in a sad, dirty, pigpen state here, but I think my roommates are secretly happy to have a break from my fishwife carping. I am usually standing over them with a cattle prod in hand to whip them into shape, so this is a nice break for them. Little do they know that when I am back in action, well, woe to them! They may have the upper hand now, but soon, after ridiculous amounts of antibiotics (and some diflucan to keep the bread sticks at bay (sorry, bad yeast infection joke) ) they will be forced to live like humanoids again. Gotta go practice my cough to impress my doctor now. Tootles.

Ghost Of MS Past

It has been a long time since I have been this sick. With my highly evolved brain I have been able to deduce why I got so sick: I had my Tysabri infusion on Monday, came home to 3 sick roommates hacking and coughing their black plague infested germs all over me, and by Wednesday I had to paint the black X on my door to let the neighbors know that there is sickness here. (And you thought geniuses only lived in lamps!) I had forgotten how much fun MS and sickness are. I never get sick unless the stuff they pump into me makes me sick, ie getting Tysabri done, hence lowering my immune response, thus making me more susceptible to the tuberculosis being spread around this house. (Not exactly sure what is making the rounds here, but I know it is a hideous thing worthy of quarantining all of us.)

I haven't been really sick in so long and the few times I have been under the weather were not as bad as this, so I forgot how it can kick up The Ghost Of MS Symptoms Past. I have had so many attacks in the 3.5 years since being diagnosed, and the attacks I've had have run the gamut so that I can't believe there is a part of me that has not been affected yet. So yesterday, at a really low and sick point, my vision became so cloudy and obscured I could hardly see a thing. Kind of like my first major attack that took my vision for 6 hideous, dark, irritating weeks. My right leg had as much strength as a boiled noodle, my left leg was boiled a little less (which allowed me to remain upright) so I had to pull out my cane collection and decide which one was appropriate for my needs. I chose a walking stick because we were going to a flea market and it had been raining for days, so I needed something that could take the mud. Today I am going to use Spongebob because I am going to be mainly indoors and that one is a traditional cane, albeit spruced up with Spongebob stickers, (Note to self: Make a Hello Kitty cane to match the days I have a pink attack.) and has a handle made to be leaned on more. The walking stick is more for steadiness. I have decreased sensation in all my extremities, I have had attacks that have taken every limb at one time or another, especially on my right side -- I cut my finger and didn't notice until my sister pointed out that I was dripping blood. My bladder has turned into warm jello, so I go to the bathroom at the first sign of a drop of urine in there. I have the dreaded itchy spots, now in more places and really bad on the right side of my face and upper left arm, which I have dug up with only limited relief. And I would swear on a stack of MS magazines that my cognition is at an all time low too. One of my biggest lesions is located in the corpus callosum, between the two hemispheres of my brain. And I swear it slows down my cognition between the two. I am having a harder time finding the right words for stuff (<---see?!) and putting into words what I am thinking. My response time and how long it takes for something to click are really slowed down too.

So I am sick, itchy, twitchy, slow to comprehend anything, and very wobbly on these over-boiled noodle legs of mine. The only good thing about this is that it reminds me of how good it feels to be well. How nice it is to not be a bundle of MS symptoms that I thought had gone away. Sometimes when I am feeling this cruddy I wish it was bad enough for me to go into the hospital for. A catheter and someone to bring me my meds and meals while I just sleep would be very nice right now. I am going to have to hobble back to the flea market again today, it being its last day and knowing that the sellers will be more willing to come down on prices because they don't want to have to haul all that crap back, and I have my eye on a few things. Too bad it is an eye that has a spotted field of vision and no depth perception at all, so I hope the stuff I want is as good as it seems to me right now. Who am I fooling? Like I care when it comes to cheap crap that I don't need! I'm a sucker for these kind of things -- they are the only thing that could make me leave my house right now.

This is probably rambling and disjointed, so I apologize to anyone who had to wade through this to see if I made any points worth making. My stupid vision is so messed up I am going to have to count on spell check to correct this for me. Hope you are doing better than my black plague/tuberculosis ridden self. Love you, Blindbeard.

Making The Rounds

Update: Thanks, guys, for the comments and I am really sorry I didn't mention all the blogs I visited -- I can only blame my mucous filled head for being so slow. I am also going to check out all the blogs you suggested, can't say my presence will help them any, but I like to be a (athletic) supporter whenever I can. See you on your blogs soon!


Yesterday, while I was knocking on Death's door (okay, not really, but I sure felt like the bottom of an outhouse), I cruised around reading a bunch of different MS blogs and was impressed by the veritable plethora of different takes on having MS. All night last night, while panting through my mouth because my nostrils decided to seal themselves shut and practicing my cough, I thought about how different and myriad it all is. It makes me think of the old saying, "there's an ass for every saddle." Not that I am calling you an ass, more like myself, because your poise and integrity are legendary, but you know that already. I left comments where I had something to say, which I almost always do, but some I didn't because when I looked at the comments someone else already said what I was going to say. Today, while feeling a little bit better, I plan to snoop around even more. I believe it was Braincheese who said it is nice to leave our own blogs once in awhile and see how and what others are up to. So while I continue to marvel over how much nasty stuff a body can produce in a day, here are some of the things that struck me the most.

Fear and worry for the future.
I believe it was Ms. Denver Refasionista (sp?) that blogged about how she was worried about keeping up with her job and worry for the future. I'm not sure how long she has had MS, but it seems like she is somewhat new to it all, not that I am an old hand, sitting in a smoking jacket with a pipe and handing out advice, I'm only 3.5 years into it. But I agreed with a comment that the first 2 years are the hardest and I also agreed with the comment that they loved their antidepressant. I too love my antidepressants (I take 2 at maximum dosage because I am that kind of a crazy bitch). I forget how hard it was in the beginning sometimes and it is nice to be reminded of the horror of trying to figure out this disease and trying to figure out a future that can't be planned. I worried for a long time about what would happen to me -- too long. I wasted a lot of time with the what-ifs. Now I try to discard every thought that starts with the heinous what-if. When I was first diagnosed it came as a complete shock to me. I knew almost nothing about MS, had only heard of it in an off-hand way when my mom would talk about a resident in the nursing home she works in that had it. I started doing research on it when they suspected I had it (before the confirmation) and decided that I did not want it, thank you very much, you can keep it. After the confirmation (a dark day. I was so angry at the doctors etc. that I wouldn't talk to them, my husband had to answer questions for me, I would only turn away. I know that is ridiculous, but it was just the way I felt. Also, everyone wanted to hug me and I didn't want to be touched. I was very angry for a long time.) I wanted to know everything about the disease, the DMDs and such. I was under the impression that accumulating disability was a choice -- that if you ate right and exercised you could avoid it. Not sure where I got that idea from, think it was because everyone talked about taking care of myself and blah blah blah. I tried to read some MS magazines but they angered me so much by talking about it is such positive tones, and the only information on the DMDs were in the ads for them when I wanted to know the technical breakdown of them, ie the reduction rate for relapses, the side effects, etc. I tried a support group but the only information I could get was from the Rebif lady and she only knew about Rebif; there were no other representatives there so I didn't feel like I got the whole picture. All she could tell me was about the sharper needles, the rotation of injection sites, and what days you injected -- stuff I cared about not at all. I wanted to talk to someone who had a disease that came out of the blue and with a vengeance. Someone who had such an aggressive disease and was going downhill as fast as I was, but they were all older and had had MS for years, decades, eons, and were so blase about it my anger boiled even more. They cared more about what they were going to bring to the next potluck dinner/support group then anything else. Thus, my bad attitude was born. I made a solemn vow to the gods of potluck dinners that I was NOT ever going to be that way. I will never act like it is better than it is, and I WILL say what I think about it all, whether they want to hear it or not. So I don't always make BFFs when I go to such things -- but I don't care. I don't ever want to be in that category of MSers. That is also why I started my own blog. I didn't think too many people would care about what I had to say, but beaver's dam it all, I had to say it anyway. Okay, getting back on track. D.R. reminded me of the fire, anger and determination that spurs me on to do what I'm told I shouldn't do. The strength to say, "Yeah, I have MS, but I'm still going to do as I please, when I please and how I please whether others like it or not." If I want to wear my superhero costume to an MS walk, then I will. If someone is blathering on about the "gift" of MS (the quickest way to make my blood boil) I will tell them that I think is sucks to piss my pants in public, to walk like the world is lopsided, to have facial tics that make me make strange faces at inappropriate times; and why don't you hear people with Ulcerative Colitis babbling about the gift of UC? Or people who have bowel problems with their MS saying how great it is to have to strap a bucket on their ass to leave the house? (For the record, I have the "urgency" in both of those cases I just mentioned.) It was nice to be reminded of this -- maybe not for the public in general, but definitely for me.

The informative blog.
I was really impressed with these. You guys are so informed and smart and up-to-date on the latest news! A couple of examples of these are Lisa E.'s brassandivory.blogspot.com and living-with-ms.blogspot.com. It always impresses me that some people can have so many talents -- and makes me a little jealous. Their blogs are always good, informative, thought provoking and sometimes heart-rending. If I am too lazy to look into certain issues more closely, I can always count on them to have blogged about it and broken it down in terms easy to understand, and the cogs in my head are rusty and slow so that is a big compliment to them.

The "Its so funny because its too true!" blogs.
Ahhh, yes. I'm sure you know where I am going with this one: Good ol' Braincheese. When you are ready to laugh at the more ridiculous side of MS, she is the one to visit. Not only is she from the state I live in (Nebraska, and no I don't live in a corn field) but she and I seem to have the same sense of humor. And willingness to talk about the less pretty side of MS, which is always needed. She consults Dionne Warwick and I stick with Miss Cleo. She has the ability to make me laugh at things I never really gave much thought to, and we all need more laughter in our lives. I'm sure there are others out there, I just haven't stumbled upon them yet, but when I do I will gladly share what I get from them. Funny thing is, you probably know them all already. I'm always #2 and the last to get anything, but I am comfortable with that.

So keep blogging, my fellow bloggers, and know that I enjoy every take on every aspect of this disease. Even if I don't agree, I am always interested in how others' view this disease. Now I must go marvel over the things a sick body produces and hope we have enough Kleenexes in this house...

Death's Door

Update: Why is it that when I am sick I never lose my appetite and only crave sweets & junk food? Why can't I crave carrot sticks or oranges? Instead I had to make a batch of cookies before I chewed a hole in the wall.


All week I have been taking care of the sick people who live in this house with me, so it is only natural that today I feel like a plague infested rat that has an overweight elephant sitting on her chest. I think it is just allergies (my ex-husband said he heard on the news that the allergies this year are the worst they have been in a long time, with the ragweed out of control) but that is a small consolation when one feels so cruddy. I don't want to complain too much about allergies because mine are very mild and usually don't mess with me much beyond a day or two when they are really bad. If mine are bothering me, others must really be suffering. But I do feel bad enough to wear ugly, comfy shorts, a worn out but soft T-shirt, and an ugly but comfortable brassier. I plan to catch up on all your blogs, work on some things of mine that I have been neglecting lately, and read till my eyeballs fall out. I may loll around in bed for the majority of the day too if I can get this elephant off my chest. And when I am back from death's door, I will be back to posting my usual junk. FYFI: I am working on my superhero costume for Halloween and other situations that call for it. I already told my family that I was going to be a superhero for Halloween. It is a big change from my usual costume of the living dead -- I am so perfect for that, walking just like a zombie would.

Potpourri Of MS

What exactly would a potpourri of MS smell like? In my case it would smell like alcohol swabs, fresh bedsheets with a sleeping body on it, coffee (to keep me out of that fresh bed), turpentine (to clean my paintbrushes), and the cold air from my window that I leave open year round. I remember reading about how Stephen King came up with his ideas for books. He said that it was like what gets caught in your drain, the stuff you have to clean out from time to time otherwise it will build up too much to allow water to drain. I think that is a perfect analogy of what happens to me. I get a build up of ideas and words that I have to clean out of my head to move on to the next idea. So without a single definite idea, here is the potpourri of ideas that need to be cleaned out so I can move on:

Secondary To MS.
Maybe it is just my bad luck, but it seems that ever since I was diagnosed with MS everything about me has become secondary to it. I am not longer just me. I am me secondary to MS. When I made a "suicidal gesture" it was recorded as a "mood disorder secondary to MS." My overwhelming depression and anxiety are "secondary to MS." When I got deathly ill (in my own mind at least) after the steroids and thought I might have pneumonia, the doctor found that I only had a bad lung infection that was "secondary to MS" due to the steroids, which always mess up my lungs. If I complain about any problems I am having, bodily or mentally, they are always taken in the context of my MS. I know MS messes with the whole organism, but sometimes I feel like I got pushed aside for my MS to take over my (pathetic) life. Anything I say or do that may be a little different from the norm is chalked up to my having MS. I know people love to say that they have MS, it doesn't have them, but sometimes I feel like it has me because I cannot be taken as just me. I will always be secondary to MS and that really chaps my hide.

Too Thin Women.
This is not totally related to MS, well, not even close actually, but it has been on my mind lately. Whenever I see a too thin woman I can't help but be glad that I have some meat on my bones. I am hwp (height/weight proportionate, for those of you not up on singles' ad talk) and proud of it. Before 4 rounds of steroids in 10 months, I was an underweight 125lbs at 5'10" so I know about the whole too thin thing -- but mine was not intentional. I didn't like my saggy jeans that looked like I dropped a stinky in them and I certainly didn't enjoy not having much on top. The 4 rounds of steroids made me gain 55lbs of which I have lost over 20lbs, I wouldn't mind losing maybe 10lbs more -- but that is all. Before starting Copaxone I was a full 34C. One of the less common side effects of Copaxone, that I was unlucky enough to get, is "breast tissue enlargement." I went from my acceptable 34C to an unacceptable 34D with double boob for awhile there, but there is no way on this side of the grave that I will go up to a 34DD, NO WAY! Even though I have lost about 25lbs, I am still firmly in the 34D size and unhappy about it. I always thought big boobs would be heaven on earth. I was dead wrong. They suck. They are hard to hide and if they show I feel like that is all anyone sees, especially when I see their eyes dart to my chest, back to my face, down to my chest, back up to me etcetera. I have also noticed that when I venture into an area of more money, the women get thinner. I don't envy their boy-bodies at all. I like having hips and a waist, not just a straight line. And I even enjoy having a little more on top, even though I wish it was a little less, because these women have nothing. Do men really find this attractive? I find it so unfeminine and too 12-year-old-boy-like. I also think they see me and are glad they are thinner than me while I am looking at them and am glad I am heavier than them. I love having curves and wouldn't be a beanpole again for anything.

Adjustment Issues.
The worst part of being single again is getting used to not having to care for someone else. Sure, I do all the housework and cooking, but I am having a hard time getting used to not having someone else to keep up on. I used to give my husband manicures, pedicures, facials, and all sorts of different things to keep him presentable. Now I don't have anyone to do that for and it feels weird, like something is missing. I give my sister pedicures but she isn't into facials as much, even though she really needs them -- her pores are so clogged (and I have a horror of clogged pores). I used to plan meals by what others' like and wanted to eat. Now I just throw together something for Princess and I and it is usually kid-friendly, and we all know how quickly kid-friendly food can get old. I feel like I need someone to shop for, stock up the house for, hang their shirts up the right way for, iron their clothes as needed, keep the food and shampoos and soaps they like in ample supply, keep a clean house for and so on. I have toyed with the idea of making a resume for someone in need of a woman's services (not sexual -- not ready for that yet). I could give copies to my brother-in-law, he is a fireman and knows plenty of men who could probably use my services. As it is all these housewifely talents are being wasted when there are probably people in need out there with wrinkled shirts and no hot meals. And that is just not right.

Those are the main things that have been rattling around in my head and clogging up my thoughts, but now that they are out of the way I can move on to the next idea, and I'm sure it will be my usual nonsense. Like lately I have been pondering why I am such a klutz who always has her foot in her mouth... but that will be a different post.

I'm A Legend In My Spare Time

Yesterday I woke up with an idea that can only be chalked up to divine inspiration. Being a true child of the late 80s and early 90s (even though I can't stand cherry chap stick -- all medicines growing up were always cherry flavored) I loved In Living Color, especially Handi-Man. His catch-phrase of "never underestimate the powers of the handicapped" was rolling around in my head and giving me ideas that were too good to ignore. I also have a deep love for alter-egos and dressing up. I decided that it was time for me to embrace my inner superhero and become Handi-Girl. I have a cape that only needs to be attached to an acceptable shirt and I have commissioned my mom to make me a suitable skirt. There is no way I am going to wear spandex pants -- I gained too much weight from steroids to scare the women and children (or maybe I should say men) of this town! It has to be black because that is the most slimming (and I really need that!). I am working on a symbol for my shirt, one that is recognizable, respectable and can easily be ironed on (I have those things where you can make your own stuff to iron on to clothes).

I will be the defender of the gimps, a symbol of the injustice we suffer at the hands of the non-ataxia challenged. With my cane and reaching tool I will stop those who want to park in handicapped parking "real quick" when there are those who really need it. When we have to fight to get decent medical care I will be at the forefront to protest the injustice of "the rich stay healthy and the sick stay poor." When the SSA plays the how-long-can-we-drag-this-out game, I will be there fighting to have our voices heard and to help those who need help find the resources to continue the good fight. Handi-Girl is going to join the ranks of the MS advocates (at her local NMSS chapter, of course) to show that we will not take the SSA rewriting our disease and telling us how our disease is regardless of what respected neurologists say about it. She will not tolerate their unfounded beliefs that our symptoms are not disabling and will work to get better representation for those suffering from what the SSA deems "mild and not disabling" diseases. Even if she has to gimp her way to every political figure or become a lobbyist herself (which I have been considering) she will not let those in power ruin her brethren.

Be prepared to see me make an ass of myself (nothing new there) by going about in my Handi-Girl outfit. I have beautiful plans for what I will do in it, like go to MS walks, advocate in it, maybe even start to attend some MS support groups in it, go to rallies (and if there are none, start one), the opportunities are endless! I know I said this before, but it bears repeating: The SSA messed with the wrong crackpot! I am not going to crawl away quietly with my tail between my legs and the more they f*ck with me the more determined I become.

Everyone's A Critic

Sometimes I wish I could get fired from my job. Do I have dreams? Do I have aspirations? Heck no. But I have a toilet bowl that is springtime fresh, according to the toilet bowl cleaner label. I don't do much outside of cook and clean for ungrateful persons-who-shall-not-be-named (*cough* Sister! Princess! *cough*). If someone cooked and cleaned for me I would be so grateful, I would not even complain if they put my kitchen towels in the bathroom. But, alas, no such luck for me.

I don't fold my shirts, I hang them up.
God forbid I forget that one! We couldn't possible fold our clothes and put them in our dressers! That is just silly talk. And if our dressers puke out their contents all over the floor, that is acceptable -- it makes finding something that much easier. Even though I labeled their drawers for them, to make it easier to organize and keep track of what goes where, they still like to start at the top and stuff in as much as possible regardless of what it is. The top drawer will be bursting with pajamas, shirts, shorts and unmentionables, but the bottom drawers will be empty.

I get hungry at night!
I never ever under any circumstances eat in bed. Never. So I do not understand the wrappers and dishes strewn about in their bedrooms. Have a snack before you go to bed, just don't take the box of doughnuts to bed with you. And if you have to take snack cakes and milk to bed, BRING THE DISHES BACK OUT! I will gladly do the dishes (because nobody else will) but I will not take them out of your room. And if I get bugs in my house, doom on you! I will take it out on your big round behinds!

I don't put my hairbrush/makeup bag/hairdryer/straightening iron/hair products there.
I do. When you don't put anything away you have to deal with where the person who does put things away puts them. And sometimes that means you will find your makeup bag in with the bathroom cleaners because I like to pitch crap under the sink when it takes over my sink. They tell me this like they think I care. Like I am worried about where I put their stuff when they leave it all over the place. Silly kids, I don't care if you don't want your stuff by the toilet bowl brush. If you don't like how I put it away, do it yourself, or do your hair with toilet germs, it doesn't bother me.

Did you wash my ______?
I gladly do the laundry. I will not pick it up off your floor so if you want it done drag it the 5 feet into the bathroom laundry basket. If it did not get washed you have several options: put it in the laundry basket and wait for it to come back around; wash it yourself, you can even borrow my antique washboard and take it to the river; wear it dirty; wear something else; or go naked. I am okay with all those options.

You made that for dinner?!
You know what my favorite meal is? Whatever someone else makes. I will never complain if someone cooks for me. I will praise it to the skies and back and eat with a grin on my face even if it tastes like something fresh from the manure pile. The other day I made a meat loaf and my sister said her's was better. Then the next day I made sloppy joes and again she thought she could have done better. She has IBS so she gets the runs from anything slightly spicy, so I made those meals more bland to help her. After the criticisms, I made stuff the way I like it -- with a little bite to it -- and enjoyed watching her race to the toilet. When I suggested she make the meals, she decided that she had never tasted anything so delicious in her whole life and that nobody can cook like me. Why I don't have my own cooking show is a mystery to her! All others pale in comparison to me.

Can you move your stuff over? I want to color here. Why are you painting seaweed?
I'm not painting seaweed, they are going to be flowers, thank you very little. I paint with oils and I like to layer the paint. Where you want to color is my art desk. You may use it, but do not touch my stuff because oils take a long time to dry and I don't want them smeared. If you push all my stuff around and scatter my painting utensils, I will get crabby. If the dogs chew up my brushes and paints (which the little one did -- he ate one of my white oil paints) I am going to take it out on your piggy bank. I don't care if I have to haul the change to the bank to cash it in. Please don't eat at my art desk, I do not want crumbs all over my stuff and in my paints. But as you have already dug into my stuff, please try to be respectful of my things.

I love my roommates more than anything but sometimes I get tired of being the maid to such slovenly pigs. It is a full time job keeping up after 3 people who do not do anything. If they eat something they just drop the wrapper, after a shower they wad the towels and leave them anywhere, they bunch up my kitchen towels after drying their hands so that I am forever going behind them and unbunching them so they don't get mildewy. I go around saying, like a mantra, "Don't leave that there! Pick that up! Put that away! That doesn't go there, put it where it belongs!" and so on. I made a map of where the trash can is outside for them so they wouldn't get lost, and I gave them a list of things that they can do and I won't get mad about. Like take out the trash when it is threatening to topple over. It is not a Janga game. We are not trying to see who can pile it the highest without making it fall over. It is okay for them to take it out when it is full, they don't have to wait for me to do it. Yesterday my little sister's room was bothering me so much I snapped. Her laundry was filling the living room because she has no organization in her room and thus no room for all her crap. I went into her room where she and her boyfriend/fiance were sleeping, yanked the covers off them (all the while praying they didn't sleep nude) and made them get up and clean that room. That is the benefit to being the older sister, you get to be bossy and get away with it. The good news is they got it clean enough to get the crap out of my living room and I was able to vacuum a small part of her room. Baby steps, but progress all the same.