Courage And A Little Hope

At the MS gym that I am now a proud card carrying member of, which I never saw coming due to my negative preconceived notion about it, they are making a quilt to raffle off as a fund raiser for the gym. They want everyone who is so inclined to to take a square, make a design that represents them and how they feel about MS, how they deal/fight it, and write why they chose that design. I took a big square and a little square, not out of greed but because they want people to make both if that is their wont, and it is my wont. I puzzled over what I would do. I tossed around different ideas, like making a big friendly dog with a blank look, because that is how I feel when I go in there. I go in happy to see everyone and feel like I slobber all over them, which I probably do but they are too nice to tell me so. I finally came up with my idea and am now going to share it with you. No need to thank me; I'm generous like that.

I am going to make on the big square the Chinese sign for courage and on the little square the sign for hope. I have always said that for me having MS is more about courage than hope, and if I ever get another tattoo -- highly unlikely, the 2 I have are more than enough -- I would get the symbol for courage.

Hope is all well and good in a passive kind of way. I do have hope for the future and what may come of studies about MS, but I can't put all my diseased eggs into that basket. I do not foresee a cure for MS in my life time and can only hope for better drugs to help slow it down. I hope for medicines with better efficacy and with less side effects to come down the pipelines soon, but don't want to pin all my hopes on that lest I be disappointed when they do not come down that clogged pipeline.

Courage is active and I like active. For me, hope is sitting back and waiting, whereas courage is facing what is. Do I have the courage to face what this disease has done and most likely will do to me? Some days I do. Other days when I think about what the future may hold for me, I lose my courage and get scared. Then I start wrestling with the "what ifs," which I HATE and try to remember that I need to deal with what is right now and worry about the possible outcomes when they come. I want the courage to look this disease in the face without flinching. I want the courage to deal with what may come and to accept it with grace. The courage to deal with how the public may react to me -- mainly because I struggle with that some days and want the courage to go out even on my worst days instead of hiding at home. This is a scary disease and I think "courage" should replace "hope" as our catch word. It takes a lot of courage to face this disease and I need as much as I can get. I don't want to be the Cowardly Lion anymore.

In My Defense

I got this comment the other day in reference to my blog post http://http://blindbeardsmsblog.blogspot.com/2009/03/i-hate-puberty.html.


Why do you need to be so critical, how about instead of venting your story off to the rest of the world you remember your own puberty and realize that she just might be embarrassed or scared? How about you try to make her feel better instead of making up a dumb story of how you're going to kill her. Guess what, every other mother has to deal with these issues and you can read that from other parent blogs or watch it on sitcoms. So get over it! Plus, if your daughter wants to play cash cab trivia, maybe you should just go along with it and then stump her. You sound like my mother: critical all the time, doesn't seem to care, and has no sense of humor other than negative sarcasm. I know she really does care, but would you want to be close to someone so cold? And about the bathroom issue, I assume not caring as much develops with age, but for the mean time, wouldn’t you rather they were embarrassed instead of flaunting their goodies to gods know who? Nonetheless, unless you are like the last commenter, trying to vent some steam, to read such negativity from someone who seems to be so negative and trying to prove she is so much better than two children and a bunch of teenagers. I’m sure if your daughter read this when she is older, she would feel bad and be embarrassed for being so ignorant. But you're the mother and if you weren't thinking about how witless youth can be, I'm not sure what you could have been planning for. Aside from that, your writing is quite superb. I don't know what you do for a living, but you can beyond any doubt be some kind of writer.

--Anonymous


I pondered this comment for almost 3.26 minutes last night, reread that post this morning and am now ready to add a little information that might make things more clear. I'm not Princess's mother; I am her aunt. I agree with the whole respecting-her-right-to-guard-her-goodies-like-they-are-precious-metals. In fact, we are very careful about her in the bathroom. We knock and let her know we need to come in so she has plenty of time to wrap herself head to toe in a towel.

It may sound like I am being cold and critical, but I am not. Or I am not trying to be at least. I still kiss on her and hug her throughout the day. I always tell her that I love her, have a good day at school and to not stop being adorable each morning when I drop her off at school. The problem is her teenager attitude. She is snarky, stubborn, quick to point out anything anyone says or does wrong, and 100% committed to her belief that what's mine is hers and what hers is hers, and gods help you if you touch anything of hers. A perfect example: she took my pit juice to school and "forgot" it, yet still popped a vein when she saw me using some of her old pit juice that she doesn't even want. I had to wear a pair of her socks the other day and she bitched and moaned about it until I really did want to chop her into bits and stuff her into the walls. She wears my socks and when she gets home from school, takes off her shoes and walks around in just my socks for the rest of the day, leaving them nasty and forever stained. She needed new brassieres but wanted me to go get a bunch for her to try on at her leisure here and then I return the ones that didn't work and get her more of the ones that did. She was mad that she had to go with me and try them on. She wouldn't talk to me the whole way to the store and when we were done she said, "that wasn't so bad." Last night she told me that she doesn't want anymore vampire shirts -- she is on a huge Twilight kick -- and to get her some werewolf shirts. Aye aye, Captain Craphead, let me get on that for you. She hates having to load the dishwasher so she loads it so nothing gets clean and when I showed her how to load it so things do get clean, she said that if we didn't like the way she does chores we shouldn't have her do them and just do them ourselves, to which we got a good laugh out of and she still has to load the dishwasher. Now she just has to do it again if she deliberately does it wrong.

When she starts up with an attitude that is going to get her into a lot of trouble, I give her a warning and let her try again before I lose my patience. Most days she will take the warning, other days... not so much. I do remember how it is to have your hormones all messed up and try to be patient and understanding about it, but some days she pushes me until I snap, and then, yes, I do think a quiet cell on death row would be nice. Lastly, she reads my blog posts and knows what I write so it is no surprise to her what is on here.

On a positive note about kids, we were playing Apples To Apples the other day and were reading out loud the cards that we had in our hands still when the game was done. Jabber's first card was "Ever glads," which amused us and Princess, in a rare moment of kindness for her brother, told him it was Everglades. His next card was "Canned Indians," which stumped us because we weren't sure what that could possibly mean. It was Canadians, but now we like to say, "Do you have Indians in a can? You do?! Well, you better let the poor guys out!" He also just had a conquer sore in his mouth. I hate those conquer sores; they hurt! Princess used to say that cracktice made perfect and called Jacuzzis, shaboozies. I miss those good ol' days when she was obsessed with Disney princesses and so sweet and funny. Some days I still see a glimpse of that, and I like those days.

Never Gonna Live That Down

What an eventful last few days we have had. Being snowed in has brought us so much closer and made us remember just how much we love each other. Well, not so much. It's been more like fighting and seeing who is the Queen of the Wii and that only depends on which game we are playing. I'm so out of practice on a ton of those games that Princess has been handing my ass to me more often than I get to hand hers to her. But today promises to be another snow day so I will get to hone my skills and maybe not be last in all the games. Sigh, dare to dream.

The other day Princess wanted to see what her zodiac sign was so she looked it up and announced that she was "Pissy." I about fell off the couch laughing and told her she is a Pisces, although Sugarbowl and I agree that Pissy is more fitting. Now we tease and heckle her to no end about being a Pissy and think we need to start a petition to have it officially changed. She doesn't see the humor in being a Pissy and thinks that her wonderful pre-teen attitude should not be taken into consideration. If anything she thinks we should start a petition to have a non-Catholic be able to be canonized and have her be the patron saint of tortured pre-teens. I think she should stick to being Pissy; she is no saint -- said by another non-saint.

Last week Sugarbowl was having abdominal pains. They kept getting worse and worse until she woke up one morning no longer able to bear the pain so I drove her to the emergency room, it being too early for any doctor's offices to be open. We spent several hours there while they took blood and x rays and finally a CT scan to make sure she wasn't having an appendicitis. And the official diagnosis? Wait for it... wait for it... She was full of sh*t! Literally! (I am writing this really early because if she knew I was telling this story we would have an even worse fighting day than yesterday and my poor butt can't take much more hitting). She had been under a lot of stress and was not emptying her bowels, even though she had been pooping, it was not enough. The CT scan came back with an "enlarged colon" and the nurse said it had to be really bad for them to note that. She is so embarrassed that she went to the emergency room to find out that she is full of sh*t. I'm not! It provided us with the punch line to every joke about her for the rest of her life! It will never get old. She could probably get disability before me with such a great diagnosis. Maybe I should have tried that one... "MS and full of sh*t," it's a sure thing!

Lastly, this has nothing to do with anyone I know, but it is so ridiculous I have to share it. We went to the children's museum a little while ago, before Mother Nature wanted to test our endurance and see how long we could be stuck in a house together before cabin fever sets in (must grab axe and chop up family...). There was a woman there that was wearing a homemade shirt that said, in puffy paint that she had most likely done herself, "single and looking." Why would anyone wear that shirt to a children's museum where most of the men there are with their families and probably not looking? Better yet, why would anyone make that shirt, never mind actually wearing it out and about?! I tried not to stare but I couldn't help it. It's not everyday that you see someone that incredibly dense and displaying such poor judgement. Not counting when I venture out, of course.

Who Needs Martha Stewart When You Have MS?

*Author's Note: I posted this one before, but after my last post I felt this one would be a good follow up. I know most of you -- if not all -- have read it, but it is still too true. The only difference is that I now have EVEN MORE stuff in my house. And some of the references are outdated, ie it has been a few more years since being diagnosed and my husband is now my ex.


I didn't go to the MS walk this year. I had several very good reasons why I skipped it: 1. Every time I go I get annoyed and/or frustrated by the people who push past rudely to get to the free stuff or don't move an inch when you say, "Excuse me." I'm glad people want to support MS stuff, but if they are there to help a good cause, why are they so rude to those of us suffering from the reason for the walk? I get irritated fighting the crowd and jostling for a chance to go to a booth. B. Last year when I went, I saw 2 ladies that the year before were doing well, but that year one had a trach because she needed the direst oxygen due to a really bad attack, and the other was in a wheelchair and very confused -- unable to follow a basic conversation. This scares me and saddens me very much. Quatro: I do not need anymore MS stuff.

When I was first diagnosed I wore MS shirts all the time so people would know why I was gimping around and burying my face into everything to be able to see it. Now, almost 3.5 years later, I no longer feel the need to tell anyone anything. I am sick to death of all this MS crap I have everywhere. I hate having people come to my house and feel like they entered a quarantined sick person's house. I am trying to put MS second in my life and not let it define me, but it is a stubborn second fiddle that wants to intrude in every facet of my life. I am trying to get away from decorating my house in MS decor, but the free stuff you get from everything makes it hard. I have, in no particular order, a gaggle of MS T-shirts that we now use mainly for sleep shirts. I say "we" because my little sister, Princess and I all wear them and could probably wear them every night for a week and still have clean ones left. I have an MSAA mouse pad that I don't use, I prefer my Spongebob one. I get 2 calendars every year, from NMSS and MSAA and I get very irritable by all the inspiring quotes on them. So much so that they are relegated to areas that I don't have to see them too much. I get the planners every year, the ones where you can track all your symptoms and problems on, which I don't use too often, I prefer a plain notebook. I have a Copaxone and Avonex carry bags that could be handy for travel to stuff books into. I have Copaxone plastic meds containers that I keep colored pencils in. I ditched the 7 day supply one, it was too small to be of use for me. I have about 50 styrofoam coolers that my meds were delivered in that my husband uses for his camping trips and which we give to anyone who needs a cheap cooler that no one cares what happens to. In my freezer are countless gel packs, some even have Copaxone emblazoned on them, which come in handy whenever a kid hurts their mouth. I have Rebif and Copaxone sticky notes that have taken over my life. No matter how many sticky messages I leave, they seem to multiply like cockroaches when no one is looking. I have pens for every DMD and MS society you can think of, some with thick places that you hold on to for shaky hands. I have a Betaseron first aid kit with a handy rope to wear around my neck, which will never happen in this life. I even have a Rebif mini fan with a cord to keep it around my neck and handy at all times. I wouldn't mind using this, but my nieces and nephews love it so much I hardly ever see it. I have plastic cups and mugs that scream about MS and I only use when all else is dirty. I have an Avonex water jug that could hold half the Platte if need be. Somewhere is a Copaxone Walkman with earphones that I have never used. I have an insulated Copaxone water bottle that I use in the back yard when in the pool. I have Rebif sunscreen and Copaxone chapstick. I have magnets, magnets, magnets, with the major DMD companies' numbers on them and ones to the special pharmacy for my special meds because I am special, and I mean that in an I-should-be-wearing-a-helmet kind of way. I would love to be classy and decorate my house in Martha Stewart, but I have a different theme in my house: Multiple Sclerosis. At least they are both MS but one is sold at K-Mart.

This Blog Is Brought To You By:

Copaxone, "Leave no area uncovered!"

Do you find yourself missing those maddeningly itchy mosquito bites in winter? Do you want to have so many lumps on your body that people think you sprouted more boobs? Are there still some areas on your refrigerator where you can see the fridge? Do you have some space left on your bookshelves? Are you not getting as much mail as you would like? Would you like more people to call you? Then you need Copaxone!

Copaxone can give you all the itchy injection sites you can scratch in a day, and even more for the next day! Why settle for 2 boobs when you can have countless? You will feel like you need mammograms for all 7 injection areas with Copaxone! We guarantee that you will be buried in so many magnets for your fridge that no one will ever doubt that a person with MS lives in your house! Each magnet comes stamped with the company name and phone number in case anyone else would like to call us.

We will help you fill up any empty areas of your bookshelves. The makers of Copaxone know that the 521 books you already have about MS are not nearly enough, so they will send you more, even if you didn't ask for them! We will even send you several copies of the same book so you can share with friends! Act now and we will even send you our daily planner that highlights all your possible injection sites on every page! Whip it out and impress people with how dedicated you are to all things MS!

Your mailbox will overflow with all our correspondence! We will send you more letters repeating the same things than you will ever care to open, let alone read! We don't want you to ever doubt how dedicated we are to you and you making sure to inject yourself every day! Your mail person will want to curse our names for sending so many love letters to you!

Forget a phone that doesn't ring! People will think you are the most popular person around with all the phone calls you will get from the makers of Copaxone! We will check in with you as much as possible to make sure you are having no problems with our product and to see if you received all our free gifts. You will find yourself avoiding the ringing phone instead of being glad some one finally called you!

Get Copaxone today and "leave no area uncovered!"

Cast Of Characters

A comment I recently got started the crusty wheels in my head a' turning:

"... I feel like I know you and your family (sugar bowl, princess etc.) Sort of like a familiar tv series that you get to know all the players."

That made me think that maybe I should give a more formal rundown of the main cast to this R rated drama that is my life. (Once upon a time I would have called it X rated, but things have really changed for me.) Princess is going to give her input here too, to help balance (?) it out. Youngest to oldest we are:

Jabber

Blindbeard says: He in an 8 year old ADHHHHHHD kid whose tongue is hung in the middle and flaps at both ends. There are only 2 thoughts rattling around in his head: boogers and video games, namely Mario and Luigi. His hair is a red/orange, more orange then red, so we also call him Pumpkin Top, like if he hits his head we tell him to be careful not to spill his pumpkin seeds, or to start using his pumpkin seeds to form a thought that doesn't involve boogers and video games, or, being a boy, his penis. You don't want his hands to touch your face or, God forbid!, get in your mouth because you run a VERY high risk of getting raging Shigella. But he is also a very creative kid who can entertain himself for hours with the simplest of things, like a pair of earmuffs and a bungee cord will keep him occupied for hours. Who knew that bungee cords and earmuffs could have such great conversations? I wouldn't have thought they would have much in common.

Princess says: He is an annoying 8 year old boy who is addicted to video games but only the video games we have here. He has to take his DS every where and loses his games, and sadly, we bought him more for Christmas. Sorry, I was asleep when you asked me and I had a dream you were drawing a cow that looked like a sink.

Princess

Blindbeard says: She is an 11 year old know-it-all who is highly intelligent and can be a good companion but hates shopping to the point that it drives me crazy to take her with me. She is worried someone might see her naked body and goes to great lengths to make sure no one does. She is one stubborn mule and will dig in her heels and not back down no matter what the consequences may be for doing so. She doesn't think her mother and I are funny when we know we are damn funny. She is breathing down my neck right now and is watching every word I type and correcting me about everything.

Princess says: I'm the best person ever! Don't put that! I don't think that! It makes me sound conceited. You know, I am going to go in and delete all this! I hate you.

Sugarbowl

Blindbeard says: That woman and I are either getting along great or at loggerheads about something or everything, depending on the day and whether she took her meds or not. She is very creative and she and I can play off each others wit and amuse ourselves for too long. She talks too loud, due to ear problems as a child, and will blast everyone out of the bleachers at Princess's basketball games, no matter how many times I try to shush her. Her car is a mobile dump that drives me insane to have to ride in it, so we take my car so she doesn't have to hear me bitch about what a disgusting mess her car is. She likes stupid pets and I have to pull out my bossy big sister to keep her from starting a petting zoo in her room. She is allergic to cleaning and one tired lazy slob, but I still loves her.

Princess says: I say nothing about her.

Blindbeard

Blindbeard says: I know I have a lot of faults. I am a clean, organized person by nature and living with slobs can make me very hard to live with at times. I do not share well, what's mine is mine and I will not share with you. I tend to not have a lot of empathy for others, and do not care what anyone thinks about me, only what I think about them. I have certain things that I do not like anyone else to touch, like my favorite pen. One time Sugarbowl took it to work because she couldn't find any other pens. She didn't tell me until she got back home because she knew I would pop a vein in my head if I knew. I now hide that pen better. I change the words to songs all the time, to suit my mood and what is happening around me. I am very literal and will miss a lot of things that are not meant to be taken literally, or it takes me awhile to figure it all out. I read boring books that no one else can understand why I would read, but I am an historical non fiction addict who can only go so long without my fix.

Princess says: You are a great big glob of greasy grimy gopher guts; smell so bad it drives me nuts. You like to go shopping way way way too much. You can be fun and funny when you want to, other times you are an ass hole (she actually said that! And told me I could write that!). You steal my animals, even though I recovered one. The other I will never recover (her dog). You yell at me to get ready even though you have nothing else to do. You talk constantly; you have diarrhea of the mouth (HYPOCRITE!). You think the couch is yours even though you DIDN'T EVEN HELP MOVE IT INTO THE HOUSE! (The couch is mine, for the record.) You read dumb books. You get up at the crack of dawn.

BB: Don't you have anything decent to say about me?
P: I don't think I do. But you can be my best friend at times.

Party In My Pants

And nobody is coming. There have been so many parties at my house, one would think we are a bunch of wild & crazy gals. Alas, we are not. We can't even pretend to be. But sometimes we like to think we are rockin' the place.

Princess's Party

Princess has been grounded for the last umpteen years for yelling at her mom to "SHUT UP" when her mother told her to turn off the wii and get ready for bed. That went over like the proverbial lead balloon. I was reading in bed and heard it all. I was surprised that Sugarbowl did not react worse than she did. I was afraid things were going to get so ugly I would have to pry my tired arse out of bed, don my striped referee shirt, grab my whistle that I use to get the dogs' attention and whip their butts back into shape. Sugarbowl did not go off on a yelling spree, but grounded her for a long time. The next morning she gave Princess the option to apologize and have her sentence reduced, but Princess is one stubborn mule and wouldn't back down. She told her mother that she could have said more! (Sound of all those lead balloons crashing to earth.) Now Princess is on a party of "I'm sorry now, so let's all be friends and unground me" and nobody is buying it. She's trying to play the martyr and show how innocent and sweet she is but the last 11 years are against her. So until her sentence is over -- Christmas day -- she will be partying by herself.


Sugarbowl's Party

So Sugarbowl boo hoo-ed and got herself a dog. He is a Chihuahua and mini pin mix and one cute little booger. He is also very resistant to house training. We toss his butt outside but he couldn't possibly pinch his stinkies out there. He can hold it until he gets back inside, thanks. The other day Sugarbowl had a date, which is a great story in itself, and came home late. Her room smelled like a fresh pile of poo, but she thought the cat boxes got too close to the furnace and it was pumping all that stinky air into her room, so she just went to sleep. When I had to poke my head into her room the next morning, I noticed the horrible smell, but thought the same thing about the cat boxes and maybe because she closes her door at night the stench was trapped in there. It was trapped all right, because Rupert (her dog) had a diarrhea party in there and squirted crap all over a bunch of her clothes. Sugarbowl says she was the only one who showed up for the party because Rupert sleeps in my bed and he can only come in her room to crap. She wants him to stay with her but she says -- to my great amusement -- that he strains his main butt hole vein to get away from her and get to me and will only use her room for a bathroom. She was so mad about all her clothes that were covered in crap, and her breathing in diarrhea air all night, that she gave me custody of Rupert for the last 2 days. I don't want custody of him. I already have, against my will, 2 dogs and DO NOT want a third dog. I actually only have one official dog, my yellow lab, the corgi is Princess's but for some reason that dog attached himself to me and only has 2 thoughts in his head, "Protect Blindbeard, and DESTROY!" Now Rupert has decided that he likes me best and with him and Widget in my bed, there is little room for me, but we sure do keep warm. Widget gets pretty pissy about Rupert in my bed and I have to break up their fights, which they usually like to have in my face, too often. It's a good thing I like dogs so much or they would all be sleeping on the floor. Damn my soft loving nature!

Lastly, I will leave you with this 12 Days of Christmas that Princess penned about all our pets. I hope you enjoy it as much as I have. (I'm going to condense it with comments.)

On the first day of Christmas my true love gave to me,
A Pembroke Welsh corgi.
2 golden labs,
3 crapping Chihuahuas
4 sneezing Stubbys (a stray cat that adopted me and has a chronic sinus infection)
5 cross eyed kitties (her Siamese cat that is cross eyed but the best hunter we have)
6 not-so-Angels (a cat that is a pain in the butt)
7 dirty Kiras (Sugarbowl's cat that doesn't "wipe" after using the cat box)
8 little Nellies (an outdoor cat of unknown origins)
9 Butterpads (her gerbil)
10 squeaking Squeakers (her other gerbil)
11 stinky dog farts
12 diarrhea parties.