Who Needs Martha Stewart When You Have MS?

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.

I'm Baaaaaaack!

Did you miss me? Because I missed you, yes every last one of you. Your beautiful smile, lovely eyes, gentle touch... oh wait, wrong website. I mean, I never go to websites like that! I am an upstanding person of strong values who would never soil my pure mind with such fabulous trash as that. Speaking of such, I ran into a profile on myspace that went on and on about how the Bible is their favorite book and they were looking for someone of similar values yet he was a swinger. Now I am not sure exactly how that all works, but I am pretty sure the Bible does not condone swinging. I haven't read the Bible for a few years (yes, I have read the whole Bible several times) but from what I remember, swingers seems to be the opposite of what the Bible is about. But I have been wrong before. There is nothing I love more than hypocrisy and irony, they are the bread and butter of my sorry life, so to not make a comment of some of this stuff is really hard for me. My little sister said I need to make a profile for myself that I can use just to comment of these types of things. I even have a great name picked out, "Butt Plug." It has such a nice ring to it. So if you get some snarky comments from a Butt Plug, that would be me. But if you do not try to portray yourself as holier-than-thou while having things that do not add up with that attitude, you will be safe from my venom.

Yesterday was my Barfday; I turned 34. That is no secret, which is a good thing because if it was it would be the worst kept secret in Nebraska. All day yesterday, everywhere we went, Princess went on and on about how it was my birthday and she could not believe I was 34. Wow, 34! Isn't it crazy that I am now 34?! That makes me almost 3.5 times older than her. How does it feel to be 34? I am getting so old (to a 10 year old). Who could believe that I can be 34 and not need an oxygen tank, walker, and a special chair that dumps my ass out of it for me? Personally, I have not found my 30's to be that bad and I do not think 30's is old, but what do I know? I need a Boy Scout to help my ancient arse across the street now. Other than that nothing new to report here. We are up to our eyeballs in boxes and frankly, my dears, I am sick to death of unpacking all my junk. My little sister said the next time she moves she is only taking a change of clothes and a toothbrush... or maybe just buy the toothbrush later. I have to agree with that. You never realize how much crap you have amassed until you have to move it all, especially when you move into a smaller house. So there is the Blindbeard/Butt Plug update. Its great to be back and I need to get to your blogs and see how you are doing. Hopefully better than me in my messy house and one-foot-in-the-grave-and-the-other-on-a-banana-peel self.

Forced Vaycay

Due to my recent move back to my home town, I do not have internet in my new home yet. I will be getting it on the 22nd, so until then try to amuse yourself. I have no worries about lack of amusements, there are plenty of fabulous sources of entertainment on here. I will be back on the 22nd, until then, don't you stop being adorable!

Kiss My What?

Due to recent events I have been looking into new housing for myself and Princess. I don't spend too much time worrying about whether people would want me or not, but whether I want to rent from them or not. I know I am a good tenant, I am clean, quiet and pay my bills on time. So it came as a big surprise when a recent possible landlord was very concerned about the fact that I am disabled and didn't have any recent references. I have been married for 6.5 years and with my husband for over 8 years -- I haven't exactly been renting anything in that time. She was too concerned by my not working, even though I am able to pay the deposit, first month's rent and even a few months in advance if need be. My husband is a champion saver and I am getting a sizeable divorce settlement that is squirreled away in my mother's care. Also my mom was willing to sign the lease for me and say that she would be willing to cover me if for some reason I was unable to pay the rent, which she knows won't happen because she knows how much money I currently have. My mom has almost perfect credit and works full time, she is an excellent "risk." But did this matter to said bitchy-possible-landlady? Heck no. She went on and on about having to talk to her attorney about what they would have to do to rent to a disabled person and what modifications would have to be made. I told her that I am not in a wheelchair and as the apartment has no stairs in it, to it or around it that I would not have a problem. I was also willing to sign an agreement that if anything happened to me that I would not hold them responsible. But all she could think about was my not having a job and being disabled and what that could mean to them. Now, if you read my blogs at all I am sure you can guess how I feel about this. I want to pull an Eminem and circle their house with my windows down, my system up, screaming I don't give a F*CK! And being the forgiving person that I am I put a curse on them: for that apartment to be open and generating NO money for quite some time. Gosh, I am such a good person it almost brings a tear to my eye. I have a new found sympathy for those who are discriminated against. I have never been a person to discriminate against anyone, but now I have made a sworn promise to the God/s that I believe in (don't want to get into that subject and offend anyone, especially as I believe that your beliefs are a personal thing) that I will never, ever, for ever never and forever discriminate against anyone for any reason. I know how it has made me feel, like a lesser person, not quite as good as everyone else, and I never want to make anyone feel that way. So to bitchy landlady, doom on you and may your apartments be either empty for extended periods of time or filled with tenants who destroy them and don't pay! But I'm not bitter or anything...

Why Boys Come From Jupiter

I would normally post this on my other blog, but this is too good of a story not to share. Growing up we used to say, "Boys go to Jupiter to get more stupider. Girls go to Mars to get candy bars." Not the most creative or painful insult in the world, but we thought it was. The other day, Princess (or my young ward, take your pick. She is not my biological child.) was talking about what people from other planets might look like. She is in that stage of unanswerable, ridiculous and annoying questions, "What would we do if hair grew from our backs and it was purple? What if horses rode on our backs? What if we thought cats screeching was music (after we heard some cats mating one day)? What would happen if we ate dog food and dogs ate our food? Don't you wish we could live on a cloud?" and so on and on and on. She liked the idea of people from Jupiter so much she decided to draw a picture of what they would look like. She called them, "Juperpeans" even though I thought they should be called, "Jupiterlings," but what do I know? Turns out that people from Jupiter have their arms and legs in all the wrong places, and their butts and heads are reversed. Lucky for me she labeled the parts because at first I thought she had drawn something way beyond her years or knowledge. Between the legs (I think they are legs anyway) were some... things hanging; big and long things. I'm no virgin so they looked suspiciously like testicles and I would have assumed they were if she had not labeled them for me as a butt. I enjoy that drawing so much I am going to keep it for her to see when she is old enough to see what that butt really looks like, but until then I am enjoying telling people that boys really are from Jupiter and I have proof. Of course I don't say this in front of her. I'm not ready for her to understand yet.

Nine Needles A Stabbing

And my arms look like a junkieeeeeeeeee's!
This last time that I got my Tysabri done they could not get an IV started on me; my veins would blow every time they tried to push the syringe of whatever-that-fluid-is into them. I blew (get it?) past my old record of 5 pricks (way too many pricks for any woman to deal with) into a new astounding 9 times! The last record was from the steroids, which we all know mess up your veins, and I was not particularly interested of breaking that record. It surprises me that I would be a hard person to get an IV started on, having garden hoses for veins, especially in my hands. I was not really worried about the difficulty in starting an IV on me, but my mother was. My mother is an RN (she got her BSN degree in her late 40's after my father walked out on us, an inspiring story of determination and tenacity that I can't relate to) and she was concerned about it. She was asking me all kinds of things, like if they considered trying my thumb, which she called the "nursing student spot," whether they thought about doing one on my leg, which would need a doctor's approval, or if they talked about starting a pick (right spelling? I don't know. I've never seen it in print, just heard the word.) line on me. Even before my mom was an RN she always worked in the medical field, so I took in medical terms with my baby food and beyond. We didn't get bruises, we got hematomas. Diarrhea? Never. But one could have loose stools. A runny nose? Not here. But you could have inflamed mucos membranes with discolored secretions. And God forbid we get a splinter! Out would come the needle and the bottle of rubbing alcohol. We hated the needle, so much so that we would rather have a 2x4 sticking out of our foot than deal with that painful extraction. So when anyone talks of things like pick lines, sub-q, IM and such I know what they are talking about. Even before I had MS I knew, but giving myself injections, both sub-q and IM, really brought it home for me. When she would come to the hospital to visit me when I was doing the steroids, she would check the bag, the rate of infusion, my blood pressure, all that fun stuff, just to make sure her baby was having it done right. Now with my arms all bruised and looking like the arse end of a drug binge, her best advice to me was to wear long sleeves so nobody would get the wrong idea. How pathetic. I expected better from the woman who asks for, "50 ccs of ketchup, STAT!"

Slow Lane

I always thought a great license plate for me would be NMBR 2, but the other day while I was tooling around town doing things that didn't need to be done (shopping) I was passed by a little hot rod that had the license plate "Fast Lane." My first thought was what a cop magnet such a vanity plate would be, then I thought how silly it would be if I had the same plate. I never speed because I have all the time in the world and no place to be at any given time. Also I don't work so if I got a speeding ticket my husband would have to pay it and how would I explain that I just had to get to that great sale to buy more crap I don't need? But that plate changed my mind as to the vanity plate I would get, if I ever get one. And, yes, you guessed it, it would be the title of this post. What a great license plate that would be! Me puttering along in the slow lane, lollagagging and rubbernecking at anything that caught my eye -- gotta keep a sharp eye out for those banners that say, "CLEARANCE SALE!!" I can no more pass up a great sale than I could sprout scales and live under water. I have a strict policy of never buying anything at full price, and am an object of jealousy for my great buys, everyone else in my family has to work and never gets to shop the sales like I do. I also think it would be great to be parked in the handicapped space with a license plate that said "slow lane." See that's funny because it's obvious! I love life in the slow lane, so peaceful, so much time to lollagag. You can keep your fast lane because I enjoy my slow lane so much more.