Dear Blindbeard

Dear Blindbeard,

Hi, What are sugar gliders and what do they look like? Laughed so much at the plastic bags that I cried and splattered my glasses so can hardly see now. Great fun, thanks.

Love,

Herrad

Dear Beautiful Herrad,

Sugar Gliders are like squirrels but they belong in the marsupials group. They are more closely related to a possum then a squirrel. Sugarbowl is obsessed with squirrels, so she got these RODENTS. This spring she got serious Squirrel Fever and started shucking her fat arse up the trees to try and rape the squirrel's nests for a baby squirrel. She fell out of a tree and sprained her cankle. I told her cows do not belong in trees, so I got the power of "I Told You So!" I'm not saying they are not cute, but they are so incredibly annoying that I am hard pressed to say anything nice about them and would seriously recommend you DO NOT get them unless you do not value your sleep or money: their diet consists of a lot of expensive fruits and nasty worms that keep Sugarbowl running to various pet stores just to satisfy their cravings. The little dog got ahold of a container of meal worms and ate them on my bed! Sugarbowl boo hoo-ed over the $5 that went down the drain while I had to rip all the covers off my bed and boil them in hot bleach water before I could use them again. I'd rather lose $5 than have to wash all my blankets.

In addition to that LOUD bark they do, at night no less, they make this noise like an angry swarm of bees when they get stressed. Sometimes I get so annoyed with them I go in there and rattle their cage just to see the pouch they hide in start to shake and have them become an angry swarm of bees. If any cat or dog gets too close to their cage, they start that noise. If a gnat farts near their cage, they make that noise. If I'm enjoying a show, they make that noise. I'm sorry they are so high-strung, but having them in the same house as me is making me as stressed as them. I don't have a pouch to hide in to make a bunch of loud annoying noises, so I have to broadcast it so everyone in the house knows how much I hate them. I'm starting to wish that cows did belong in trees and Sugarbowl had gotten a squirrel.

Love,

Blindbeard

Dear Blindbeard,

I am not good at typing. I enjoyed your blog? I am not very puter litterite. So, I have jade and aloe vera plants, living in fl. I do water at times they don't require a lot of water. I am secondary ms, for what that is worth? Tried almost all drugs my neuro told me to try. Hey my cat, rascal is with me. He is a great friend right here.

thx,

Susan

Dear Beautiful Susan,

Why does this letter/comment hurt my heart so much? Maybe because you are secondary MS and you sound like you could use a friend, which I'm sure after my readers see this letter you will have more friend requests than you can handle. I am glad you have Rascal. There is no better friend in the world than a loving and dedicated pet. I have too many dedicated pets and am convinced they are secretly plotting my death by tripping me and trying to make me fall down the stairs. Awww, nothing like such loving pets! Take care and I do not care how good you are on the computer, comment away!

Love,

Blindbeard

Me And My Tysabri

(Sung in the tune of "Me And My Llama" from Sesame Street.) This post is in response to Kimberly's comment about wishing to talk to me about Tysabri. Sorry, Kimberly, I can't figure out how to highlight your name to direct peeps to your blog because I am not very technologically smart -- what a glaring understatement that is! So, without further ado -- even though ado is so much fun to further -- here is my experience/thoughts on Tysabri.


Little Background

I started Tysabri almost 2.5 years ago, on my youngest nephew's birthday, after a long and arduous process of me jumping through flaming hoops, going through many long doctors' assessments, and signing my life away -- as if anyone would want my life! I have been on, in chronological order, Avonex, Copaxone, and Novantrone, with unsatisfactory results, some my dissatisfaction and some my neurologist's. I hated Avonex because it made me more tired, sick as hell, and even more depressed, which I had not thought possible. I hated that shot that hurt like a mother trucker and was glad when my neurologist said we needed to change meds because it was not doing a thing for me. Me, in my newly diagnosed state of not knowing much about anything MS or MS meds, thought that you had to be on it for a while to let it "build up in your system" before it would start working. In the 6 months that I was on Avonex I had at least 2 attacks. So we ditched Avonex (YEA! Horns tooting, confetti raining down...) and I went on Copaxone. I loved Copaxone because there was no sickness, no added depression or fatigue with it, and I could shoot up in my own home (my mom did my Avonex shots). The only side effect I had was itchy injection sites; they itch like a mosquito bite. And once I got too close to the muscle and that hurt like HELL! I was on Copaxone for 1.5 years and would still be on it if it would only work with me and reduce my attacks more. When I first switched I went the longest I had ever gone without an attack: 5 months. While on Copaxone I did Novantrone and found that I hate Novantrone as much as I hate Avonex (for different reasons) and the steroids combined. I was SICK SICK SICK for 5 days, stuck in my house for 2 weeks (couldn't risk getting any germs from anyone), and didn't lose a hair -- I was sooooo ready to lose this ratty nest on my head and rock a bald head or even a mullet wig worn sideways, that would have been so cool! So after all this my neurologist decided I needed to go on Tysabri and I concurred, having read up about it and deciding it sounded good.


My Brain On Tysabri

Camera pans to a perfectly cooked egg, because I do not feel fried, at least not from Tysabri. After 2 weeks free from any DMD, I started Tysabri. At first I did it once a month, but I would get what I call The Burn around the 3rd week. I would start getting a kicking up of my old MS symptoms and start feeling that fatigue that makes it impossible for me to be off the couch for too long. All the aches and pains would flare up and sometimes my little sister had to drive me to my infusion because I hurt too bad to drive myself safely. Now, before anyone gets up in arms and wants to brow beat me with a large book about MS, I did a lot of research about this and it is acceptable to do Tysabri every 3 weeks. I even did my research with a very painful razor cut in my arm pit, yet I pushed on anyway -- I'm a real trooper. Even though I have only been doing Tysabri a little over 2 years, I have had over 30 infusions, I can't do the math to give you the exact number so I may be underestimating the amount of times I have done it. I feel the best I have felt since MS barged into my life. In fact, I feel so good I sometimes forget what it felt like when I was on other DMDs and start thinking I could go off it because I'm obviously better -- the same thing I thought about my antidepressants and went off them years ago, only to have a "Major Depressive Episode" and realize why one stays on their meds even though they are feeling better. The only issues I have with Tysabri is that I have to drive downtown every 3 weeks, because I'm a whiny baby, and it takes them forever to get the whole party started. I'm an impatient person by nature and it takes 1 hour for the infusion and 1 hour of observation after (most adverse effects from Tysabri manifest within 2 hours of the starting of infusion). I get so impatient with sitting there for 2 hours I start to tap my fingernails and rock violently in the rocking armchairs they have in the infusion center. I understand that they have to order the medicine once I get there so that it doesn't get wasted, but I hate that it draws out the time I have to be there. I swear the pharmacy takes their sweet ass time mixing up the potion, then lollagags their way up to the infusion center, stopping to talk to everyone on their way. Because I have done Tysabri so many times, I only have to be detained for 45 minutes after the infusion, and I watch the clock to make sure I am not there 1 minute longer than I need to be. Sometimes I want to squeeze the bag to make it go faster, but the nurse told me that the reason it has to be so slow is because the medicine is toxic to the veins and has to be introduced slowly. I still don't care and would like to introduce the medicine faster and get the awkward first meeting over with quickly. (Tysabri, meet veins. Veins, this is my good friend Tysabri.)

I know there is a risk of PML with Tysabri, but I don't care (it is such a small risk anyway). I would rather get PML than go back to my rapidly deteriorating state before Tysabri. My neurologist told me, after I started Tysabri and something finally slowed my galloping MS, that he thought I would go SPMS within 2-3 years if we didn't find something to slow it down. Those are words to strike fear into the very core of me. I don't fear PML, but I do fear the idea of not being able to take care of myself.

Even though Tysabri has the highest rate of reduction for relapses, it is still not 100%. I still have a declining baseline and little nicks and gouges taken out of me, but (knock on wood) it is better than it was. My current neuro said that if I start not benefiting from Tysabri the way I was, then I will go off of it for awhile and start it again. Not sure what the current research says about that, but I am going to take her opinion on it. It scares me to think of going off of it because I do not want to go back to a raging case of MS, attacks almost constantly, only a few months reprieve between and never returning to my original baseline. No, thank you, but it was so kind of you to offer!

All in all, I feel better than I have since this disease moved in with me and would recommend Tysabri to anyone who has the option to do it. I can't think of any side effects -- not saying there are none, just that I do not have any that I am aware of besides my extreme impatience with having to sit there for too long, wondering if the friggin pharmacy people all fell into comas and no one seems to care except me. It has helped me tremendously and I hope it helps others as much.


Okay, I am done. Now I am off to Wal Mart to get a loaf of bread, stick of buttah, quart of milk and some lawn mower oil -- it's getting low.

Who Are You And What Have You Done With My REAL Neurologist?!

Has there been a recent increase in alien abductions in the Nebraska area? Should I go check the fields for crop circles? See if "send us more neurologists" has been written in the budding corn crops? I have no other explanation for why my neurologist has done a complete 180 and turned into a good neurologist other than she has had an anal probe done recently and got that annoying stick out of her hind quarters. I still can't wrap my head around it. I had an appointment with her yesterday and she was wonderful! I left there feeling good about her and myself. It is all so strange... I have almost never felt good about myself since my diagnosis. Maybe she got tired of my outspoken butt head ways, heard the grinding of the whet store as I sharpened my claws for attack, and decided she wanted to keep my private insurance money so she changed her ways. I don't know what happened but I like it. If this continues I may have to add her as a friend on one of the social networking sites I am on and start instant messaging her. I could send her a bunch of those annoying face things and we could talk sh*t about the nurses and doctors in her office.

She was so good and took everything I had to say seriously, even accepting my problems and acknowledging that I knew my body so it had to be as I said it was. She didn't try to tell me that what I am feeling is not what I am feeling and took it as fact. I poured out my heart to her and we worked out a plan of action to get me where we would like me to be. I am going to go to a pain management clinic to see what can be done and if there are other meds and things I can do to help me get some semblance of relief. I am also going to participate in a balance study where I go in and get assessed, then follow an exercise regimen and see if it helps. I will get a free membership to a local MS health club -- yes, I will be hobnobbing with other MSers -- and do their exercises to see how it helps my balance, if at all. Because I am so poor, I was considering quitting Tysabri and talked to her about going back on Copaxone. My co-pay for Tysabri is almost $400 a month while my co-pay with Copaxone is $5 a month. She does not want me to go off Tysabri because of my history of so many horrible attacks, so she is going to call the hospital where I get my infusions and see about getting me some financial aid. I told her the story of when I was using my little sister's arm for support and that ^&#%* woman asked us if we were gays and my response to her question and she got a huge laugh out of it. She told me I should be glad that I am not that woman because that is worse than having MS. I had to agree with her.

It is all so strange. I don't know what happened to my REAL neurologist, but if you find her, please do not return her. I am enjoying this new and improved neurologist so much more.

Thanks For The Memories

*Update: I forgot to add 2 more positive things about my ex, then I have nothing else nice to say about him -- don't want him to know I kind of enjoy his antics. Recently he helped me out of a monetary bind. We had an unfortunate incident where the dogs decided to chew up my big sister's pool. Nobody was interested in helping me pay for it because we could not decide which dog had done it, even though the vast majority voted for the little dog, which is not mine. My little sister got that dog for her daughter so I thought she should help pay for the pool. She said that she would have got rid of him long ago but I wouldn't let her because I do not believe that animals are disposable. The only time I get rid of an animal is when there is something absolutely unacceptable about it, like biting or too much aggression, and even then I try to work out the problem with it. So the whole amount of replacing my big sister's pool fell on me and my ex stepped up and helped me pay for it even though he didn't have to. Lastly, when I gained all that weight from doing the steroids, 55lbs in 10 months to refresh your memory, I was concerned that he would no longer find me attractive so I told him I was going to go on a diet. He told me not to do that to my body because it had been through so much already and to let the weight come off naturally. I was floored that a man would be so kind as to say that to his once-thin-wife, and truly mean it. There, I am done being nice to him. Whew! Glad that is over. Being nice is not my natural state and I am not very comfortable with it.


This morning, getting creamer for my coffee, I was unpleasantly surprised to find a thing of meal worms on top of our strawberries, right next to the sandwich cheese. I have a strong aversion to having anything like that in my fridge where I keep food, but it is a great diet tool. I go to forage in the fridge, see a vat of worms and loose my appetite. It never fails. In the early days of my marriage my husband and I went a few rounds about bait kept in the fridge. He had always kept it in the same fridge he ate out of and I could not tolerate it in the fridge I wanted to find only food in. We got a second fridge in the basement and he put his bait in there because I warned him that I was going to throw it out if it didn't get out of my fridge and he knew I meant it.

Recently my ex father-in-law was diagnosed with prostate cancer. My ex husband called me to ask about a good place to get a haircut, to make sure they were not too expensive and whether they did a good job or not. We yakked for a little bit about nothing of importance, and hung up. He called me back a few minutes later to tell me his dad had prostate cancer. He was so blase about it and I wasn't too upset either. When you spend your life as a drunken ass, you can't expect people to boo hoo about your cancer too much. Now that my ex is no longer at the mercy of his father's drunken rages, they have been able to form a kinship of sorts. They go hunting and fishing together. I asked him (my ex) if he would be too upset if his father died and he just said that he would miss having someone to hunt and fish with.

My ex, for all his asinine ways, has a core as soft as the inside of a milkweed. On our very first date he impressed me by stopping by his house because he had forgotten to feed his wild cats. Any man who would care about a bunch of rag tag cats like that was a-okay in my book. He works for UPRR, rides a Harley, is an obsessed outdoors man and looks like a rough and tumble kind of guy. I call him Pollywog, give him wedgies, pinch his chubby cheekies, give him facials, manicures and pedicures, kiss on him like he is an adorable child and the man loves it (he would probably die of embarrassment if he knew I just wrote all that). Because he looks so rough and tough, too many people in his life have treated him like he is rough and tough not knowing that he is a big softie who folds like origami at the first sign of tears, especially from me. He never puts on any kind of airs, he always is just what he is and I have a deep admiration for that.

He has been fishing a lot lately with his father. His father is not big on personal hygiene. The man used his tub to make his own beer in for a long time, has no teeth, doesn't bother to wear his dentures except on special occasions, and never uses pit juice. To say the man is ripe is a HUGE understatement. My ex called me yesterday to tell me that on the drive to the lake they were going to fish at, he had to keep his windows down the whole time because his dad smelled so bad. Later, in the boat, they got rained on and my ex was glad that his dad finally got a shower and was hoping he would be able to drive home without the windows down. They are fishing again today and my ex hopes they get rained on again, just to make sure. I told him he needed to throw some degreaser on his dad before it started to rain so they could have a pleasant drive back. He wasn't sure he brought any with them but thought that his car cleaning chemicals might do the job.

Ahhh, so many great memories brought back by the sight of meal worms in my fridge on the strawberries I was going to eat later today but now couldn't possibly. Guess that puts me on a diet whether I want to diet or not.

Pictures

Because I talk about it too much, here are some pictures from my recent wanderings. If you are not as much of a history geek as me, I understand and will not be offended if this post puts you to sleep. But for those of you who love to trespass as much as I do, feast your eyes! For the record, I never take anything, especially from a ghost town due to the old wives' tale that it will bring bad luck. And we all know that we MSers do not need any more bad luck. They are an old school house, gas station and an old store. Now I need to shower and get ready to wander some more! Tootles, BB.

Good Mood

*Update: I had a GRRRRReat birthday! It was one of my better. Sugarbowl and Princess went together to get me a flower pot that I have been coveting for too long, Sugarbowl made me a jello cake and my favorite dinner, sweet and sour chicken. I did win the Indy 500 with my racing lawn mower and get most of those spots that normal people would need a weed whacker to get. I didn't get as much planted as I would have liked, but the garden is in, so that is a relief. And, lastly, I have been plotting and planning and doing much maniacal laughing and hand rubbing in anticipation of fighting that ass hat of an ex landlord. Let the games begin!



That's right! I woke up in a good mood today. Must be the end of the world, time to start praying like hell and return all that crap you borrowed and were hoping to keep -- damn, that will cut down my personal library a ton. I am in such a good mood for 2 very good reasons:



#1: It is my barfday! I am finally 35! I have been counting down the days until my birthday for the last few months... okay, not really, I just had to pull a Princess there. I usually do not care one iota about my birthday except to ponder the adding of another year to my age. 35 seems like such a milestone, and not in a good way. I swear I can feel my nose hairs growing longer by the minute and ear hairs forming, ready to pop out and give me hairy old man ears. When I came into the kitchen to start my coffee, there were some Hello Kitty cupcakes on the table. I galloped into my little sister's room to tell her how awesome they were, and she was so thrilled to be woken up at 5:30am that she said, "Great. Now get the f*ck out of here and shut my door!" I have made a list of the things I am going to do today for my barfday and am chomping at the bit to get started.



First, I am going to go drive around on some back country roads looking for anything old. I mapped out where some old towns were -- ghost towns and such -- and am ready to inhale some dust. Usually I go alone, but Sugarbowl said she would go with me because it is "my day." She likes to see the old houses and cemeteries that I find, she just does not enjoy the process it takes to find these things: a lot of driving around in the middle of BFE. I am THRILLED to have company, so I did a lot of research last night to plot out areas that were once towns and still have stuff there. I am content to wander aimlessly, but I wanted this to be good for her, too.



Second, I am going to rattle my teeth on the riding lawn mower. I adore the riding lawn mower; it is the biggest thrill of my life right now. I love ripping around the yard and seeing how close I can get to things so that I don't have to use the weed whacker, which I detest. In anticipation of my b-day, I have been letting the grass grow the last few days so I could have the maximum amount of fun today. I can hardly wait to get out there and play Indy 500: Lawn Mower Edition.



Third, I am going to plant the seeds that I have been meaning to do for the last few weeks. I was going to work on it last night, but Sugarbowl saw me gathering my gardening tools and asked me to plant her seeds too. I told her we could do it together today. I love working in my garden and flower beds, but the heat of summer makes it impossible for me, so I can only do it on cool days, and today better be cool or I want a refund!



#2: Then it's WAR! Nothing gets me going like a good fight, especially when I am in the right. Our landlord has still not returned our security deposit. Nebraska law states that it must be returned within 14 days along with a detailed list of the deductions, if any, that were made. I went to their house yesterday and asked how that deposit was coming. His wife answered and said, "let me go get L. for you." She comes back and says that he is still working on the deductions, but it shouldn't be too much longer. With a sweet smile glued to my face, I tell her, "I'm sure as landlords you know that Nebraska law states that it must be returned within 14 days. I'm on a shoestring budget here and could really use that money." With a smile on her face, that doesn't touch her eyes, she tells me that they will get it to us soon, and they know where we live now so they know where to find us -- we live almost directly behind them.

We are giving them until Tuesday -- they get the extra time due to the holiday Monday -- then we are going to go file a claim with the small claims court. If the deductions are too much then we are going to small claims court. That house was filthy when we moved in and we took pictures to document the filth and damage that was already there. I cleaned the holy hell out of it before we left and we took pictures to document it. Sugarbowl took an old landlord of her's to small claims and won with the pictures that she had taken, so we have that in our corner too. I took on a much bigger adversary then some small town landlord, a hospital in the town that I moved here from. They were trying to bill me from being EPCed. Even though the law states that EPCs are covered by the county the person lives in, the hospital still tried to bill me, sent the bill to collections and even went to court over it. I had a heck of a time finding a lawyer that would take on that hospital, but I did find one and with a copy of the law in hand, he wrote up a letter to the court and I won the day. They still try to get me, but the last time they tried, just a few months ago, the court told them that they had no case and it is totally dismissed. Ha HA and HA, you bastards! Too bad I do my research and am determined to show these people what one little crackpot can do.

Ahhh, yes, the joy of a good birthday planned and knowing that I am prepared to stand up for myself. Our old landlord is detested in this town, so if we win against him we will probably be given a key to the city and crowned Mayors For Life. I should start my acceptance speech soon...

Hodge Podge

So many odds and ends and so little to make into a post of one subject. Guess I've never let that stop me from getting on here and spewing a bunch of malarkey before, so why start now? I know, I'm such a wild and crazy woman. And away they go!

*Attack Of The Money Sucking Flea Market is now playing in my neck of the woods. Don't bother to go and see it because you might get a good deal on some useless crap that I want and I can't let that happen. No matter how full my house is, I always need more useless crap in my life. Sugarbowl and I have not gotten any sleep the last 2 days because we can't wait to race down the road to the flea market and shop for ticks (sorry, bad joke, but it was right there, in my face, staring me down). When we got home yesterday we pulled out all our spoils from the day and piled them up in the middle of the living room so we could feast our eyes on them and talk about what a great deal we got on some of the stuff that is worth more than what we paid. Today is the last day which means that the purveyors will be even more willing to wheel and deal, because that beats having to haul it all back, and we will be there to help them lighten the load they have to haul home.

*I'm still not feeling great. After getting over the desire to spew my guts over everyone and everything in this house, I now am combating a sore throat and splitting headache. I'm supposed to do Tysabri tomorrow but think I'm going to call off.

*Sugarbowl, in her unending quest to plague the sh*t out of me, got herself some Sugar Gliders. I was angry at first because we are already an operating petting zoo, but she agreed that there will be no more pets brought into this house or I will start getting rid of some of hers. They were cute at first, but when we found out that the noises they make are LOUD, their cuteness dissipated quickly until they now are nothing more then vermin to me. They do this loud barking thing at night that sounds like a little yippy dog, the kind that makes your eardrums bleed from the sound of their bark. They did that for 22 minutes! BARK... 10 second interval... BARK... 20 seconds... BARK... 5 seconds... BARK... 25 seconds and I start to think it is all over... BARK! This all happened at 3:30 am. I never hurt animals, but after all that I started daydreaming about plastic bags sealed around 2 annoying Sugar Gliders...

A closing song for you. In the tune of Jingle Bells:

Off to the flea market
To shop for useless crap!
How many booths can I get through
Before I need my nap?

Ohhhh, jingle bells,
The flea market sells
Useless crap all day!
Up all night
Dying to wheel and deal
So get your ass out of my way, HEY!