Tecfidera; Notes From The Lobster Pot

Multiple Sclerosis sucks, but these MS disease modifying drugs are the bane of my existence. I started Tecfidera in April after trying and failing the 3 times a week Copaxone. I swear I am more old injection site lumps and dips than woman. It makes those shots such a hoot I wasn't sure how much more fun I could handle in my life and found myself "forgetting", skipping, and finally downright unwilling to do it to myself anymore. (Also I think the 3x a week Copaxone stings more.) As much as I would love to -- metaphorically speaking -- skip off into the sunset DMD free forever, I realize that is not a wise choice, especially after 10 years of being diagnosed, and increasing lesion burden in my spinal cord and in between the two hemispheres of my brain, causing cognitive problems. I had to choose between irreparable brain damage and, ugh, a DMD, there was no third door with a donkey and a cart behind it to choose instead.

As I said above, I started Tecfidera in April. My neurologist went over all the things I needed to know to get me started like, in her words, possible "brutal" nausea, and the flushing side effect. She told me taking it with rice was supposed to really help with nausea, which happens to be one of my favorite foods. My sister made me rice puddings for a few weeks because the fact that there was a kitchen in my house that actually had food in it made me want to throw up and die. I had read online that a big ol' greasy cheeseburger was actually best for the nausea but not ideal for anybody's diet especially as you take the med twice a day. Honestly, it was all just a matter of degrees. I would start feeling human again, think that maybe I could go and nibble on something, and that thought wasn't horrifically revolting, then see the time and it all made sense. I only had a few more hours until I had to take my next poison pill. I would stuff myself to the gills, take my pill, and hunker down, preparing for that nausea to hit, to make my whole body, down to my DNA, want to turn itself inside out to dump out any food that ever touched my insides. I've never been pregnant, but my sister had terrible morning sickness with both her pregnancies, and she and I were discussing nausea and it sounds like they are pretty comparable.

You know what got me through Tecfidera's mind numbingly, at many times completely debilitating nausea? Marijuana. I have done search after search to see how many people have used marijuana to get them through it and I have not found many who have said they did/are. I realize not everyone can do this, and I'm truly sorry for them because you don't have to suffer. You also don't have to pull out the six foot purple bong with Jimi Hendrix on it and start taking huge hits like you're a kid again. All things in moderation. When I start feeling the beginnings of the horror starting, I take a puff, sometimes two off a small pipe. When you take something for medicinal purposes like this, you really don't get "high" like you do if ripping off Jimi's purple haze. I can tell that I smoked, but I can still function. I go outside with my dogs and water my plants, etc. My head may be fuzzy around the edges but it's not in the toilet, and I can live with that. I knew I didn't want to sit around smoking pot forever, this was just temporary. I was keeping my eyes on the prize.

Tecfidera has cleared up my mental fog. I feel like I can think clearly again. There was NO WAY I was going to let the temporary nausea win -- it usually only lasts about six weeks. (Also I am not doing injections again, at least for awhile, a long while.) I don't want this mental clarity to go away. I feel like it would be a Flowers For Algernon situation. This is why I made the choice to smoke marijuana to get me through the nausea, and even smoking, my mind was more clear than it has been in a long time. Of course my neurologist was thrilled when I told her I was smoking to deal with the nausea.

Neuro: How have you been doing with the nausea?
Blindbeard: It's horrible. I started smoking pot because nothing helps.
Neuro almost falls off stool. Blindbeard watches passively, making no move to help. Neuro rights herself and Blindbeard is secretly disappointed she didn't hit the ground. Conversation continues as if these two women like each other.
N: You should really try to stick to the rice. That seems to be doing the trick.
BB: I've tried everything. Nothing works.
N: Well, the rice is what they recommend.
BB: I'm going to stick with my six foot purple bong. You want to take a hit and go get cheeseburgers?

The next major side effect of Tecfidera is the flushing. Oddly, my neurologist was much more interested in driving home the point that the flushing is really uncomfortable but temporary. Maybe some people get scared when their body starts feeling like they have the worst sunburn of their lives spreading its nefarious burning heat over your ears and cheeks, down your chest and back. Those 15-20 minutes sure do seem a lot longer when your arms are on fire and you have all your frozen vegetable tied to your face, ears, chest, and shoulders with those resistance bands you knew you were keeping around for some reason. When that flushing comes on, that's when I start feeling like a lobster in a boiling pot. When I was searching for others' experiences with the flushing, I came across one review where they said Tecfidera improved their hemorrhoids. Mental clarity and improved hemorrhoids, what can't Tecfidera do?!

Guide For The Newly Diagnosed: The Answer

This is an idea that I have been mulling over for awhile now. Next month will be my 9 year anniversary (cue the circus music) of being diagnosed and I have learned an obscene amount about MS since then. A truly tantalizing ton from tomes, and a lewdly large lump of life lessons. Think of how many little nuggets that we have learned the all too often (very) hard way, and think of how many things we would have liked someone to tell us when we were newly diagnosed. So, because where I am at in my disease course is a total snoregasm (from Bob's Burgers, I wish I'd made that word up!), I'm going to share some things that I have learned during this long strange trip. 

THE ANSWER

My diagnosis came out of the blue. I fell down some icy steps, left leg went numb, double vision in left eye, go see doctor, usual tests, and within a matter of 2-3 days was told I had MS. My life was like a puzzle that I was orderly putting together, the way I wanted, the way I had planned. MS took that puzzle and threw all the pieces in the air, it even mixed a few other puzzles in with my original puzzle for extra wackiness. I was so shocked, lost, scattered, scared, confused, overwhelmed, every word that you can think of like that, I was, as I'm sure most of us are in the beginning. I went to the MS walks and support groups, I talked to as many people with MS as possible trying to find out how they were okay with having MS and I was a mess. I wanted to know their secret. I wanted to know why they cared more about what casseroles people had brought than the fact that they had MS and they are only going to become more disabled (I hesitated writing that. I don't want to scare anyone; after 9 years I just started using a cane full time.). I wanted to know the answer. And here it is. The answer is Time. That's it. On those days when everything is just too much, wipe everything off of your to do list and put on it "breathe in and out." That is what you are going to do, providing you don't have to take care of others. Sometimes I would just sit, stare out the window and breathe in and out, that was my task for the day because I was too overwhelmed to take on anything more. 

In time you will start to care more about what casseroles were brought as you come to terms with having MS. At first I used to wear my MS shirts all the time so people knew what was wrong with me, now I never wear them. Why give away the answer when it's so much more fun to let them wonder? I even tell them when they ask that the answer is not as interesting as what they are imagining, because it's not. And, something I truly never thought would happen, I have even been able to put together a few parts of those puzzles that MS scattered. It has not been easy, sweet Mother of God it has not been easy, and The Answer is not an overnight cure, so it needs to be taken with 2 heaping tablespoonfuls of patience and I have been out of that since birth. While I'm waiting I'm going to go see what casseroles everyone brought.  I hope one is that jello one with the pretzels and whip cream, I freaking LOVE that stuff!

Today Is The 6th Day Of The Rest Of My Life

My new life as a non smoker. That's right, I did it! I quit smoking 6 long, hard, stressful, frustratingly slow, days ago. Days where I had to just hold on and know that tomorrow would be a little less horrible than today had been. Riding out cravings that had me gripping white knuckled on to anything near me. Trying not to be too bitchy with anyone who had the bad luck to come in my path. Reading to rags 7 Steps to a Smoke-Free Life, which is an excellent book for any of you who may need a little help along your own obstacle course of quitting smoking. In fact, that book helped me not fall off the wagon during a very bad time in my house right now. It recently came to light that Princess has not been handling her stress in a healthy way: She has been cutting herself. Now, in case you missed it, for all my crabbing about her bitchy ways -- and they can be very bitchy -- that little girl is the light of my life. I would die for her without even having to think about it. She is the reason I'm still on this planet, because she is still on it and I know I can't leave her until she no longer needs me. She and her mother have a very rough relationship, to put it mildly. Very mildly. I know that somewhere under all the hurt, misunderstanding, and loads of hate they have for each other at times, there is a drop of love. It may not be much, but at least it is there, and I hope that someday, when Princess is older, they can try to build a relationship of sorts, because this one is not very good. They are such oil and water it stresses me out sometimes trying to keep the peace around here. Sugarbowl's Borderline Personality Disorder makes things so rough, especially when she has not been taking her meds (which she has not taken for a while now) that it can be a lot of work keeping her from going over the edge about a perceived slight. If you have ever dealt with some one with BPD, you know how incredibly difficult it can be. When her BPD is fired up (it seems like she is good for awhile, then it breaks down and she is ultra sensitive and ready to take everything the wrong way and go into a HUGE RAGE over it) I feel like I have try to keep their dealings as minimal as possible. I try very hard to say things with as little negative inflection in my voice as possible, and if she still takes it as an attack, I have to hold back my own temper, and explain that she has misunderstood what I was really saying. And even then there are no guarantees that it will stop a rage. They will cling to what they think you meant, regardless of what you did mean, and fight with you about how they took what you said. It does not matter how many times you explain that that is not what you meant, they have their BPD up and can't be rational until it calms down again.

In all this BPD mess, I have a voice because I can lose my temper and throw down with Sugarbowl if she pushes me too far, which is saying something because I am very slow in getting to that level of anger. Princess can't say a word, or even twitch a facial muscle when her mother gets angry at her, and that repression is coming out in the wrong way. Communications came to a screeching halt for a few days because Sugarbowl was angry at me (and indirectly at Princess too) because I told her that Princess is cutting herself because of her mother. I should have made it more clear than that because Sugarbowl took that to mean that it is her fault, which is not what I meant. I meant that the problems she and her daughter have are not being handled in a healthy way, and I was trying to give her a heads up before Princess goes to counseling (she has an appointment) and she hears all this from someone else. I'm hoping that we can get through all the ugly that is on the horizon for us and come out the other side with some healthier ways of dealing with each other. Sugarbowl is going to look into counseling, but I would rather she take her meds on a regular basis, if I had to choose. All the counseling in the world is not going to change how she acts when in a BPD rage. I accept that she has Borderline and gets angry easily, but I do not think that is a free pass to do and say horrible things to people and not be held accountable for it. She may not be able to control the shortness of her temper, but she can control the words that come out of her mouth and her actions when angry. Princess does not have the luxury of being able to stand up to her mother like I do, so I have to run interference when Sugarbowl is raging. Right now Sugarbowl is upset about being told that Princess is hurting herself because of her mother, and doesn't want to say anything to Princess in case it adds to the problems she is having -- also as a passive-aggressive way of punishing Princess because her feelings have been hurt because she doesn't want to admit that she has hurt her daughter that deeply. I am the go between and the tension in this house is through the roof. I would rather we all not talk to each other than have any raging fights. As stressful as not talking is, the rages are a bajillion times worse. I think I deserve a HUGE pat on the back for not starting smoking again in the midst of all this crap. But I already broke my arm patting myself on the back, so I'm good. Besides, my focus is on Princess, and knowing that she is going to need me for some time to come makes me want to quit because I'm going to need all the time on this earth that I can get. That is helping me resist the sweet siren call of cigarettes. And what a sweet siren call that is! Darn you, cigarettes! Why do you have to be so delicious?! I look forward to the day that I no longer enjoy the smell of cigarettes. Pray for me.

Damn This Guilt!

I hate feeling guilty. I think guilt and jealousy are the 2 worst feelings there are. Both will eat you alive and destroy all reason. I'm not feeling any jealousy at the moment, but I am feeling guilty. Intellectually, I know I'm being dumb, but emotionally, I feel guilty. Feeling attack-y, and in a criminal amount of pain, I am not up to my usual sub par level of functioning, and Princess has been picking up the slack. Bless her buttons! She has been doing all the things I usually do without any complaint or grumbling, which she would do if I were feeling fine and made her do those things. She has made dinner the last couple of nights, and brushed off my apologies for being unable to do it with a terse, "I'm not a baby!" I know she's not a baby; she will be 13 in February, but I still hate having her do so much. I know it is the foster parent in me. I want kids to be kids and not have to worry about keeping things together. They shouldn't have to worry about whether the bills will be paid or not, making the meals, doing all the housework, etc etc. I believe in them having chores, but not doing most of the work. It bothers me beyond words to have Princess have to do so much. I don't want her to have to care for her aunt regardless of what a baby she is not. I want to do the basics to keep the house running, not her.

I worry about her being embarrassed to be seen in public with me. She says I'm being stupid. She doesn't care and isn't even slightly embarrassed. I worry about other kids treating her differently because she lives with a diseased person. I know how kids are; I know they don't want germs from someone who has a disease. I remember not wanting to take candy from disabled people on Halloween, thinking it would be tainted somehow. And I was right! Look at me! I worry that she may not want me to come to her basketball games because people will see me and know I'm her aunt. She says she doesn't care what people think -- excuse me while I wipe a tear from my eye -- and wants me there, even if she has to wheel me in on a hospital bed. She told me the other day that since I have been diagnosed, she sees people with disabilities in a different light. She sees them like she sees me: a regular person stuck in a body that doesn't work the way it should. If anything good has come out of my having MS, it is that. The fact that she sees beyond a person's disability and sees the person.

That little girl -- excuse me, young lady -- is the joy of my life. I love her more than I love anything else on this earth. I love her more than you should love something that can be taken away from you. The other day I hugged and kissed on her and told her that I would have no interest in this world if she is not in it. I would have no interest in this life if she is not a part of it, so she needs to make sure nothing happens to her. She said she has no intentions of having anything happen to her and that she feels the same way about me, so nothing can happen to me because she will always need me in her life. That helps lessen my guilt about not being able to do more around here right now. Doesn't wipe it out completely, but does help take some of the sting out of it. I'm glad she would rather have to make frozen pizzas for dinner than not have to and not have me. It makes me think I should believe her words and stop feeling so guilty about what I am.

Maybe I Shouldn't Say This. . .

But the posts that I think maybe I shouldn't post seem to be the ones that I get the most comments from. Sometimes, when getting ready to hit that publish button, I wonder if maybe I should not publish what I've written. But then I do it anyway, because I think that there may be others who can/will relate and maybe they will feel better knowing someone else is in the same ship o' fools (I have a place in the cargo hold on that ship). So here goes.

Why is the thought of suicide an almost constant companion for me? Now, before you all start calling the loony catcher and trying to get me EPC'ed, let me say RIGHT NOW that I have no intentions of acting on these feelings. Mainly because of my family. I don't want to hurt them, or leave that legacy to my nieces and nephews, but mostly because my little sister says she will put my dogs down and have me embalmed and sealed up air tight so my body will be around for decades. YUCK! I don't want my dogs put down because of my stupidity, but more than that, I do not want to be embalmed. The very thought of it makes my flesh crawl and my stomach sick. I want to be cremated. It seems natural and embalming seems the opposite of all things natural and pleasant. That is just me, and I respect every one's right to do as they please with their earthly remains. Being an earthly remain, I want to go back to the earth immediately. Not in four score and 7 years from now, not in a fortnight, not in half a fortnight. NOW! I don't think my carcass needs to be kept around and I know she would do it too. That keeps me far far away from any possible life ending things. I hope we are all clear on that. I don't want a bunch of touchy feely comments because they don't change how I feel about myself, even though they are sweet and give me warm fuzzies. Moving on.

Maybe it is this whole recent court thing. I got my "Unfavorable" decision already, no surprise there. Judge Moldy Twat decided that I could wait tables or go back to working as a sales rep in a department store. She pooh poohed my claims of pain because they are subjective and what do I know about my pain? Not a thing compared to her Most Honorable Rotten Crotch. So the process of appeals starts again. She did do me a favor by not dragging her saggy arse about getting her decision back to me, which probably strained her main butt plugged anus vein doing so, but I have to try and look on the bright side. The very thought of waiting 50 bajillion years for all the appeals to get moving makes me very tired and depressed. I'm going to file for SSI but I'm feeling so down about the whole thing that I would rather grab my little sister's 22 gauge and climb to the top of the court house, set my sights on a dried up old crotch yodeler and do it all for those of us who are taking it up the wazoo thanks to the SSA. My ex has a friend who's dad was dying of cancer and applied for SSDI to help out. When he got turned down, he went to the SSA and told them that he couldn't even wipe his own ass -- he was in a wheelchair -- let alone do the job they had come up with. He died 3 years after he initially applied and never got disability. Things like that fill me with so much hate and anger that it fires me up to beat the SSA and reminds me exactly why I won't bow out of this life and let them win.

I know my thoughts of suicide stem from my hideous depression, which is under control per Judge Old Moldy Crotch. I think my biggest mistake is not telling my shrinks, neurologist, neighborhood beggar, that I feel this way so much of the time. I hate admitting that sometimes I get so tired of having MS, that I would rather not have any life at all. I accept that I have MS. I cannot accept the limitations it imposes on me. I hate not having a say over my body. I hate being the way I am. My dragging leg, this damn fatigue that strictly limits my activities, the stupid hug that takes my breath away when it drags that hot knife down my body. The whole MS experience gets so old that I just want to be done with it some days. Other days, I have the strength to say, "F*ck it." In fact, most days I do have that strength, but I still have that nagging voice that is ready to pipe up at the first sign of weakness and tell me that I'm just a drain on my family and society, and maybe it is time to raise the white flag. As a sign of not having any intentions of doing anything to harm myself, I even keep razor blades in the house (they are great for scraping off hard water build up). I'm not going to cower in fear of what I may do and have nothing sharp in the house. I'm going to have the courage to realize that we all have options and I am opting to not act on any negative feelings I may have. I'm also opting to remember that my family would rather help me out and have me be here than save those few dollars and not have me here.

This is an ugly subject, but everyone has suicidal thoughts from time to time. Whether they are just a fleeting thought, or something that hangs out for awhile, they do surface. I don't like feeling this way. My family knows that I'm down, so I'm not allowed to be alone. I accept that I've made some bad decisions in the past and lost their trust, so I submit meekly to being babysat. If it keeps my dogs alive and me from being embalmed, it is worth it.

A Rant Unrelated To Anything

I just had my most darling little dog fixed yesterday. When I had adopted him from the Humane Society he weighed 3 pounds and they told me that he would be lucky to hit 10 pounds. He weighed in at 12 pounds. As a devoted adopter of only unwanted animals, I find the Humane Society very irritating. I also find all those animal rescue groups annoying for the exact same reason: their assumption that no one knows how to treat animals correctly except themselves. They make you lie to adopt an animal. Too often they charge an outrageous amount for an animal that risks extinction if someone doesn't come along and want it. So many animals are put down -- too many -- that you would think they would make it a little easier to adopt. And those animal rescue groups? Forget about it! They want way way way too much money, often want you to sign a contract outlining the homemade meals you will feed the animal, and want to do home visits. I have successfully raised several pets, one to 16 and am currently providing a loving and safe home for an almost 10 year old dog with horrible seizures and a disposition that is getting more bitchy as the day progresses. I don't make their meals, but they are not exactly starving, especially as I usually share what's on my plate too. I do not work in an animal testing lab, or put my animals through rigorous SATs or the like. I have found that their paws do not have the dexterity to hold a pencil well enough to shade in the correct circles so they invariably fail. And I know they are smarter than that. Well, kinda. My dogs sleep in bed with me and the littlest one is tucked in my robe right now. I don't hit my pets, except a swat on the butt for the biggest dog when he tries to hump my male cat. (That cat has only a stub of a tail due to the cruelty of some kids breaking it and the last thing he needs is a big dog trying to make babies with him.) I'm glad the Humane Society is there and they provide an excellent service to those animals who need it, but do they have to be such pompous ass hats? Do they have to treat me like I have no idea how animals should be treated? Like I only want to grab the dog, race to my car and start abusing it? And those animal rescues that insist on a home visit? Really? Are you going to interview my dogs and cats and make sure I am worthy? I'm not much of a liar in general, but the Humane Society makes me lie. I don't bother with the animal rescue groups because the money they want for their animals could buy me a new car. And a luxury vacation. And even a new set of luggage for that vacation. I also object to a home visit. It's ridiculous and insulting. I may be wrong, but I'm pretty sure there is a huge population out there that do treat animals well and they don't all work at the Humane Society or run an animal rescue. I want an animal to love and rule me and my house, but I'm not willing to be finger printed or have a criminal check done on me to adopt your pet. So, yes, I will lie like the cheap rug I am and take this most darling little dog. Now you can go back to being pompous and self righteous, Humane Society.

The Worst Companion EVER!

To say something is the worst companion ever is saying a lot. Shopping with Princess is never fun. She is only interested in pointing out everything ugly she comes across. I notice the ugly stuff but I am able to move on to things that may be of interest. Not her. She has to constantly show me everything horrible she finds. It's not exactly a good way to find things that are not horrible for me to spend my $2 on. Even more annoying is going to the library with her. She goes, finds the book or two that she wants then comes and finds me to look over my shoulder at my list of books that I want and runs ahead of me to grab them for me. As a hardcore historical nonfiction geek, I usually look at the books in the same general area as the books I have on my list, so I don't appreciate someone grabbing just that one when I want to look at all the ones near it. She just wants to hurry me up; she is not trying to help me, just speed things up. She likes to keep up a constant stream of talk about how the books I read are so boring, why do I look at the ones near the one I have on my list, couldn't I just grab a few and race out of there, how much she wants to beat me over the head with a huge reference book and drag me out by my hair, etc. etc. She's a great companion when it's something she is interested in, which is only a very few things outside of the house, but nothing else.

Having just passed the 3 week mark of unending joy with my knee, I have had plenty of time to ponder how pain is the worst companion EVER! I know it is, but when you haven't had a recent bout of acute pain, you can forget just how unfun it is. Lying in bed, keeping my throbbing knee company because it couldn't sleep anymore, I was thinking about the different kinds of pain that like to keep me company from time to time. (It is so thoughtful, it never wants me to be alone.) While my knee is a deep burning throb, my trigeminal neuralgia is a stabbing screaming pain. My legs burn and ache at night, and the muscle spasms that my MS Hug give me are like a hot knife being drawn down my body. Around my left eye I have a dull ache that I usually try not to take any pain meds for because I take so many for everything else, but sometimes I have to raise the white flag. I get tingling electric shocks up my right side that feel so gross they make my hair stand on end where they go up into my scalp. Luckily I don't get that one as often.

Chronic pain can drain all and any fun out of life. My good humor packed a bag for Reno and left me without even a Dear John letter. I'm trying to be patient with everyone around me, but patience is very hard to find right now. Sometimes I can't think around the pain and just have to hold on until the pain meds catch up -- I try not to play catch up, but sometimes it comes up so fast I get to play that most not fun game. My little world has shrunk even smaller with all this fun, and I don't care because until this pain starts to abate, my bed and couch are where you will find me. Not that anyone wants to find me right now, and I can't blame them. I don't want to find me either.

So Much Negativity

Ya know, I really wanted to write a blog post about some of the funnier things that have been going on around here. Like when we went to the local lakes here and Sugarbowl found everything disgusting on the beach and in the water. Or maybe I should say it found her. First she put her shoes next to 2 dead rotting fish, then she was attacked by a slimy clump of algae, and finally she stepped on a fish spine that some fish rudely left behind when it died and rotted on the beach. She and Acorn wanted to go to that particular beach because Acorn has big boobs and doesn't like to show them off, and Sugarbowl has a big butt and gut and doesn't want to show it off, so we had to go to a beach that no one else was at. They are ready to have others see their big body parts next time because that beach was obviously empty for a reason. I would have liked to write about that, but there is so much negativity floating around everyone right now that it has my undivided attention, and maybe if I vent it I can move on. Maybe.

Everyone in my family is hurt and angry at everyone else. It is such a mess that we would need a mediator to come in and help us all out because everyone is sure that they are right and everyone else is wrong. Mostly it is centered around my older sister and a situation that nobody can agree on. Sugarbowl has some hurt feelings towards me, but she and I are so used to fighting that we can be mad at each other and still function, mainly because we are BFFs and love each other no matter what happens. But my older sister... I'm no longer sure she loves any of us. Here is the Cliff Notes version of the whole thing.

The house that we were renting -- we finally moved -- was my older sister's house. We moved because they were having financial problems and decided to let the house go into foreclosure. The house payment was $1200 a month and we paid $1000, but they were having a hard time paying that extra $200. My mom helped us with the rent each month, so "my" part of the rent -- my mom paid mine and an extra $250 to help us out -- was $625 and Sugarbowl paid $375. The house payments had fallen behind by $5500 and my older sister had sold a piece of her land and could bring the house current but Sugarbowl and I had decided to go our separate ways by then, so she kept the money instead. When Sugarbowl heard that they decided to keep the money and let the house go, she thought that meant that we would not have to pay rent on a house that my older sister was letting go back to the bank. She thought dead wrong. My older sister still wanted us to pay rent. Sugarbowl was furious and moved out before she had to pay another month's rent to "line their pockets." My older sister said that I could take the appliances when I moved, so I was not as bothered about still paying rent on a house that they were not making any payments on, even though I thought she could have cut me a little slack and not exacted my full $625 each month. She thought she was cutting me slack by only having me pay my part and not the full $1000. Never mind that the money was coming from her disabled sister's account and her 68 year old mother. She needed that rent money. She has a lifestyle to maintain! (Sorry, a little anger seeped out there.) When Acorn moved in with me, she told my mom that the rent should really be $1000 again.

When Sugarbowl moved out, she left all the dirty cat boxes and the cat crap all over the basement floor. I had put my cat down months ago and was tired of cleaning up after her cats. I knew she was moving and she had planned on taking the cat boxes with her, so I didn't clean them. She went downstairs, took one look at the dirty, overflowing cat boxes, and decided that she would just buy new cat boxes. It angered me so much that I left all that mess because all the stuff in the basement was hers and I wanted it to soak up as much of that cat crap smell as possible. My older sister is mad that the basement was that bad and is feeling "used" because "her" house was so dirty and "trashed." They had left a Foosball table behind and they claim that a cat climbed up on the Foosball table, somehow squatted on those moving poles, and peed on it. I can understand how a cat with a UTI would do something like that, but the only cat that had been in that house with a UTI was one of hers that she had to put down after it had peed all over the house. She kept talking about how a cat had peed on and wrecked "a $400 Foosball table" like we should pay to replace it when they had left it down there for a year and a half. If it was so damn important, why did they leave it for so long? And I think the $7000 they made off of us for rent for a house that has been foreclosed on would cover that expense. She doesn't see it that way and is mad at us.

Remember those appliances that she said I could have? Well, apparently I misunderstood her saying that I could have them for meaning that I could have them. I only took the stove because the one here is so old. She decided that they needed that stove so we had to move it back. My mother and 69 year old stepfather moved that stove back so she could sell it and maybe make a little more money. Now here is where it gets really fun! The land that she sold a part of to help pay off some of their mounting debts, my mom bought for her. She didn't intend to buy it for her, but she helped them get the loan to buy it, then they couldn't make the payments so my mom paid the whole $70,000 for them! They made $45,000 off of the piece that they sold and didn't give my mom one dime of it because she looks at the land as "her inheritance." Never mind the fact that my mom may need that money some day if she should ever -- God forbid! -- need to go into a nursing home and it ate up any money she has and nobody would have an "inheritance," she got hers! Never mind the fact that this duplex I moved into is my mom's and a nicer stove would help the value. She could sell that stove and make, what? $100-$150? That and all the other little "loans" my mom has given her over the years would bring her "inheritance" to about $150,000, by my conservative estimate. I was digging around on the internet looking for information about Borderline Personality Disorder, which my little sister has, to see if there was a way she and I could communicate better about the things that are bothering her about me, when I stumbled on Narcissistic Personality Disorder. I finally found what my older sister has. She has ZERO empathy for anyone else. She is exploitative to other people, especially her family, and she is preoccupied with having the "perfect" life. She has to have the best of the best and their lifestyle is going to put them into bankruptcy. She has an arrogant, haughty way of dealing with people and wants to be admired and envied.

I don't want a big fight in the family, so I am going to keep my distance until we all are a little less angry about all this. I am going to try, but whenever I think about this whole situation it makes me so mad I want to go toe to toe with her and have it out. I don't think it would change anything, her being Narcissistic, she would never see anyone's side but her own in all this. But sometimes I really want to say some things that she would never forget!

Dear Blindbeard: The Agree To Disagree Edition

Sometimes you just gotta agree to disagree. These are a few of those times. But it doesn't mean I love you any less or that you are any less adorable, because every one knows that you are adorable!


Dear Blindbeard,

Frankly, I disagree with your perspective on the parking lot encounter. I just think that guy was, in his way, looking out for us all. So many people cheat and illegally use those parking placards. [I know, because my brother took mine for awhile before I caught him and took it back.] There aren't many handicapped parking police, so we have to keep an eye out for each other. Can you really say you were so offended by his simple query?

BTW, back in the day when my disability was invisible, someone actually spit on my windshield when I was in the store. Another time I was yelled at from across a parking lot. It's hard to explain under those circumstances, but I just take the bad along with the good, and appreciate having the privilege of close parking.

Webster


Dear Beautiful Webster,

I really can say I was VERY offended by his simple query because it all boils down to one thing for me: IT IS NO ONE'S BUSINESS WHAT MAY OR MAY NOT BE WRONG WITH ME! In fact, if he too "is like me" and has good days and bad days, shouldn't he of all people understand that even though to him I seem "so able" that maybe, just maybe, I have a similar problem to his? We have all seen people park in handicapped and thought that they sure didn't look like they needed it, but since being diagnosed, I now assume that they must have something wrong that is not apparent to me but must affect them in some way. I don't presume to judge their disability level and do not appreciate any one judging mine.

I realize that I sound very angry here, but I am not angry with you, my dear. I get angry every time I think of that man and want to hunt his pompous ass down and stuff my medical records up his wazoo. My sister was so angry with him because she said that he has no idea of what we all have been through since I have been diagnosed, ie my suicide attempt, my extremely low opinion of myself, my propensity to want to harm myself when I get too down, etc etc, and he has no business judging me.

I'm sorry that you have had people react that way to you, and you must be a much better person than I am because I would have yelled some very colorful words back at those people and started a rumble in that parking lot. It is just not any one's business and I do not appreciate people making it their business.

Love,
Blindbeard


Dear Blindbeard,


I am somewhat confused. Really.

Visiting a MS-related website I always expect to find something related.

But this isn't a case. But that's probably OK.

By the way, I, being a MS-er, am concentrating on natural MS cures.

I cured my MS in 1997 and have no exacerbations from since.

All best

Czes Kulvis


Dear Beautiful Czes Kulvis,

I can't be all MS all the time. It depresses me and bores me too much. Besides, I may have MS but that is only one part of my life and of me. If I had to talk all MS all the time I would crochet myself a noose with "Goodbye crewel world!" crocheted into it and hang myself. And as I can't crochet a thing, I choose to not talk MS all the time.

There are so many great MS websites out there that are all MS and I visit them to keep abreast of what's going on in the world of MS, but I have a feeling that is not what you really wanted to comment about. Call it a hunch, but I have a feeling you really wanted to talk about your "cure" for MS. While I am deeply interested -- yawn -- in your cure, I am going to stick with my own regime of dealing with my MS until science proves a better way of dealing with it. And if that way does indeed prove to be your way, I will become a most devoted minion to you. Until that time, I hope you remain exacerbation free for another 13 years.

Love,
Blindbeard

If I Said...

That an ex's wife is unattractive, would that sound like sour grapes? Even though we parted on good terms and I'm not convinced that was the wrong choice, can I still say that she is a little flaky and... silly, without sounding jealous? Because I'm not jealous and I know that those grapes aren't exactly to my taste, but it still sounds bad to me to point out these things about his wife.

I ran into an ex recently and we happened to be in a place where we could talk for awhile without getting in any one's way, sadly. I'm not hip on the long, "Sooooo, how have you been?" conversations because how do you sum up X amount of years and having MS and the havoc it wreaked upon my life without out feeling like the violins should be playing in the background? His wife was friendly enough, but she acted and said a few things that were, well, flaky and silly, and he and I met eyes when she did these things, like we were in agreement that what she had just said/done was a little flaky and silly. Apparently there is something there, because he did marry her, and even though I didn't think she was attractive, he must. That is a very unkind thing for me to say because nobody is nominating me for Miss Universe, and I'm sure there are plenty of people who thought the same thing when I got married. I was a skinny stick with such short hair that people always asked me if I were a lesbian. On second thought, maybe they thought my ex was getting lucky and I would bring a girlfriend into the mix... Who knows?

I also couldn't help wondering how things would have been if he and I had gotten married. How would he have handled my MS? Makes me think of that Sheryl Crow song, "Are You Strong Enough To Be My Man?" And, sadly, I'm not sure he could have dealt with it as well as my ex did. Could he have handled the spotlight being taken off of him and shined on a wife with a disease? Everyone asking how his wife is instead of fawning over him? He always had a way of making me feel like second best. Second best to his ex, that one girl he dated etc. He always gave left handed compliments -- and I'm left handed, so no offense to any lefties out there. "Yeah, I love you, but it makes me think of this one time with this one girl who I really loved... blah blah blah." It always made me feel like I would never measure up. So obviously she did measure up. I wonder if she has to always hear about some ex, if I am ever that ex that she is second best to. Does she get tired of always having everything traced back to some other situation with some other girl that leaves you feeling like you will never be on the same level as she is?

Maybe that is why he chose someone flaky and silly. She will always be willing to give up the spotlight to him and may not mind hearing about all those superior women who came before her. Or maybe I am too busy being flaky and silly and feasting on sour grapes to see the truth here. I don't regret he and I parting ways, but I am surprised at what was better than me.

I'm In Love With Mary Jane

That's right! I said it! Beings as I'm always the last to figure anything out, I just recently discovered how much marijuana helps my MS. Sure, I had heard about it and my ex was always trying to get me to do it, and he is not a smoker of any kind. He heard about Montel Williams smoking it and decided I needed to do it too. About 4 years ago I tried it because my left eyeball was killing me. It worked, but it made me hungry and tired -- 2 things I didn't need any help with after gaining 55 lbs from the steroids and struggling with a depression that wanted me to sleep all the time. Now after 4 years of getting to really know my MS and having tried all kinds of different meds to help me with pain and spasticity, I found something that works better.

My little sister came over one day when I was in a foul mood due to a killer pain in my legs and face. She had some wacky tobaccy so I asked her to share some with me. I could not believe how good I felt after smoking. The pain in my legs and face went away and suddenly my legs were not so stiff and I felt like I was walking like a normal person. I felt so good, I didn't want to sit. I wanted to walk and walk and walk, because I couldn't get over how great my legs felt. I slept like a baby on a double dose of Nyquil and felt so rested and not so stiff the next morning that I wanted to shout it from the roof tops that I'm in love with Mary Jane.

When I started doing more research about the effects of marijuana on MS, I was even more convinced that I need to smoke it. It may even slow down the disease progression. When my mom read all the stuff I had found, she wanted me to smoke it more than I already was, and my mom is a SQUARE! In fact, she drug me outside and sat on the porch with me to smoke because she said it is a bunch of sh*t that I can't do this legally (in Nebraska) and she would go to court with me to give anyone an earful that is feeling lucky enough to take on my mom. And my mom is one tough old bird.

The only down side to my newest favorite pass time is that I don't get "high" like back in the day when I didn't smoke it for medicinal reasons. Sure, I feel good, but I don't get all giggly and stuff. Maybe because I'm more interested in how great my body feels? I don't know and I don't care. I do know that it takes away my pain and lets me sleep better than I have in years. Ahhh, Mary Jane, lets run away together, like to Colorado, where we can love legally.

Bigger Than Me

I don't usually blog this late in the day but my eyeballs feel too dry and sore to close. This morning my littlest dog was hit and killed in the road. I adored that little thing. He adored me. He slept pressed up against me and if I moved he would readjust to be pressed up to me again. I went outside to call him because he wasn't with the big dogs and saw him lying in the road in front of the house. He had been hit so hard his eyeballs were knocked out but there was no blood, it was all internal. From that moment this whole day has felt like a bad dream that I can't wake up from. I have been swallowed up by a grief that is bigger than me right now and it has me thinking about other times my grief has been bigger than me.



There are the other pets that I have lost in my life. Those were like what I am feeling now but so far in the past that I can think back to that pet fondly without wringing more tears from my swollen eyelids. Then the obvious breakups that break the heart and leave me wondering that my sorrow doesn't show on the outside. When I'm hurting this bad, I am shocked that I can look normal to the untrained eye. I feel like my clothes should be as ragged and ripped up as my heart is. That all the ugly, bad feelings in me should be smeared across my face so the whole world knows how I'm feeling inside. So I don't have to try to smile and make small talk when I have to struggle to comprehend the most basic words.



I got the phone call at home when I was diagnosed. I knew that the doctor was going to call me after the MRI results, but was hoping that it would not be what I was dreading. When she told me that there was no other way to interpret the results other than MS, I could barely thank her and hang up the phone before I fell to the floor crying. <----This is where I got cut off last night by a thunderstorm. I have been pondering the times in my life when the pain has been bigger than me. Where you just have to keep breathing in and out and know that someday -- hopefully sooner rather than later -- the pain will come down to manageable size. The pain upon realizing that I have MS was so much bigger than me for so long, I didn't think it would ever subside and let me be something other than a big ball of pain. It did take a long time, but I learned a lot from it. I learned to be with the pain, cry when I feel like it, mourn when I need to, make no apologies for my sadness and know that someday it will be much better than it is right now. Today I have to focus on breathing in and out -- and remembering that someday it will be better.

"Finally An Adult!"

One of my old foster kids moved in with me. My little acorn is all grown up and ready to come back to the ol' oak tree. And this ol' oak tree was waiting with open branches for her to come back. She is 20 now. I got her at 12. 12! And she will be 21 in October. Ahh, how times flies when you're not having fun. She is my all time favorite foster kid. I always said that she and the oldest boy we had, with the 3 boys we got, should have been mine. These 2 kids and I bonded and I let the oldest boy go because he was only 3 and I didn't want to separate him from his brothers, even though it broke my heart to bits to let him go, I did it out of love.

When she got to go home she was 100% against it. She wouldn't pack anything more than an overnight bag to go home because she was "going to be right back." I packed up a bunch of her stuff, but she still left as much as she could at my house. After the courts said they could go home, I expected the girls -- there were 3 of them -- to ride with their parents, if for nothing else for their parents' feelings. Both the older girls rode home with me, only the youngest, 7 at the time, rode with her parents and I remember my shock at seeing her climb into the front seat with her parents and drive off with no one wearing a seat belt.

Taking my acorn to her parents' house, we held on to each other and cried and cried our goodbyes. I know it didn't make her parents happy to see how much she and I loved each other, but it was just a fact. The girls were with us for 15 months and when they were finally able to go home, their case worker gave us the option to keep them, but it was a package deal. We kept them all or none, and as the 7 year old was convinced that she "was gonna die!" if she didn't get to go home, we let them go. My acorn -- who I will now call Acorn -- went through a hell of a time with her parents. She suffered through serious depression, and dropped out of school. When they were with us, they were all straight A students. The 15 year old had dropped out of school before she came to us, but I don't play that game. She went back to school and had to do summer school before she went back to catch up, but she did catch up and, as I said, they were all straight A students.

The 7 year old, who is now 14 almost 15, says that if she could go back in time, she would tell the courts to not let them go home, because things were better with us. She says that even though she hated when she got in trouble and got grounded, she needs that. I say what I mean and mean what I say. If I told her to do something or she would get grounded, I meant it and I still love the memory of her telling me that someday she was going to come back and ground me and make me go to bed early. I can't wait for that day! Their parents try, but their mom is working full time and trying to keep it all together. They don't have the resources that my ex and I did. They don't have an extra car for the girls to use to get a job, or even get the practice to get their driver's licenses. I respect their mother for trying so hard, especially as it is exactly as my mom had to do to keep it all together for us. I respect their mother even more for telling Acorn that she shouldn't have made her come back to them, she should have let her stay with us. That to me is a true mother. She loves her daughter enough to want the best for her, even if it was letting her go.

Now Acorn is back with me and one of the first things she said was, "Now I am on my own. I finally get to be an adult!" I'm not so sure of how adult I am, but I am glad that she is ready to spread her wings and get to make her own decisions about her life. I always say that kids need a solid platform to jump off of to launch themselves into the world. It makes it so much easier to launch yourself if the platform is solid. Not that you can't launch yourself on an unstable platform, but I think you will be more successful with something solid behind you. I may not be an adult, but I am a solid platform that she can always count on.

This ol' oak tree is THRILLED to have her Acorn back, and looking forward to seeing her get her life going the way she wants it. I know there will be disappointments and things may not turn out the way she is planning, but that is just part of the game. And I am ready to rejoice or mourn with her every step of the way. Ahh, my little Acorn, how do I love thee? I will have to count the ways in a different blog. As usual, I have blathered on for too long.

All Are Guilty

I have not been blogging because so much is going on in my house and all of it is ugly. But because, as one person said to me, a blog is a place to be honest and expose your heart and soul, I am going to give an as honest and impartial run down as I can of all the crap that is floating in a big black cloud over my house.

My little sister and I have been having a lot of problems since about right after Christmas. If you have never dealt with someone with Borderline Personality Disorder, you are VERY lucky. It is a constant challenge. You need a thick skin and the capacity to forgive after they go into a rage and say the most horrible and (potentially) damaging things to you. I am slow to anger and quick to forgive, which is probably why she and I have remained friends throughout our lives and why I am not worried about us being friends again someday. No matter what she says to me, I NEVER allow myself to go certain places, even if she does. They will take anything you say, give it a different meaning than what you intended and get mad about it. Even after I say that that was not how I meant that phrase, she will still argue the whole thing based on how she perceived it, not on what I really was saying. I am no Job, so sometimes I do get tired of it and lose my patience with her. People have their limits and she can really push me past mine.

She has not been taking her meds for quite awhile because she has never been good about remembering to take pills and she thinks she has been doing really good without them. I think she needs to take her meds no matter how "good" she thinks she is doing without them. There is no room to breathe around her without them. Everything you say can and will be held against you and given different meanings than what you actually said. Honestly, I have not been taking the high road and have been dealing with her in the same way she deals with us. I remember what my ex husband said after they had their first huge blow out fight, he said that he had been biting his tongue long enough and is tired of it. Those words keep going around and around in my head like a broken record. She will tell you that he is an ass hole and that is why they got into that fight, but the truth is a little different than that. It was shortly after I was diagnosed and she and I were planning a trip to go see my dad in AZ. I started having an attack and was going to have to go do the steroids again. She was upset that my attack was putting off our trip and came over to my house to ask me when I would be better, when we could go on our trip, would I be ready next week? Would I feel better in the very near future? Was I going to be able to watch her kids while she was working? Were we ever going to be able to take that trip? I didn't have any fight in me; I was still reeling from my diagnosis and not exactly thrilled that I was having another attack just a few months after my last one. My ex said that I just sat there and took her anger, which I did. He lost his patience -- he cannot tolerate anyone saying or doing anything negative to me -- and told her to back the f*ck off and leave me alone. The whole thing escalated into a MASSIVE fight and the rest of that story is not pretty and not worth telling.

I tried to keep the peace around here but got tired of it and started giving it back the same way she was giving it to us. It all started over a sandwich. I had made grilled cheese sandwiches and tomato soup for dinner. Princess had a friend over and they were all playing games. I was tired of frozen foods and wanted to make something a little healthier for everyone, so I let them play their games and made dinner. Sugarbowl didn't like the bread I used for the sandwiches and kept making fun of the bread, saying how dry the crust was and so on. It irritated me because I was trying to make them something a little better than what I make when I am too tired to make a decent meal. So I took what was left of her sandwich off her plate and threw it to the dogs. She went into orbit and went off into a tirade that was embarrassing to Princess and I because Princess had a friend over. When I took her friend home, I told her that I was sorry that she had to see that, but sadly, that was not as bad as it usually is. Princess said, "that was actually really good for her. She usually is worse." And I couldn't disagree.

I try and protect Princess from her anger as much as I can. When she goes off on her, I try to get her to turn it onto me. Sometimes she fills me with so much hate I start thinking some extremely negative things about her and wish things that I don't really want to come true once my anger cools.

This post has gotten too long, but I needed to set the stage of how she is before I can tell the saga of our latest problems. I will post Part II later. Until next time, thank your lucky stars or whatever you thank, that you do not have to deal with some one who is Borderline.

That Damned Note

Yesterday we were talking about The Day Blindbeard Went Crazy, ie when I tried to kill myself. We were talking about the note I left, which was the second biggest mistake I made that day. They took the note and everyone wanted to talk about it. The cop who took me to the emergency room, the nurses and doctors in the psych ward, the mental health review board that I had to talk to to get out of the loony bin, I swear they printed it in the paper with my address and phone number for anyone else who wanted to discuss it with me. I left the note for my husband, not the rest of the world, but no one cared about that. Leaving that note pushed my "suicidal gesture" into an intent and that is what damned me to 5 days in the loony bin because it meant that I had every intent of finishing what I had started. I pulled out the note and reread it to Sugarbowl yesterday, and she said that if I never wanted to pull it out and read it to her again, she would be just fine with that, because the note is sad and it brings back the memories of that day. I'm going to share the note with you -- for the few who have not had a chance to discuss it with me -- because even though it has been almost 4 years since that day, I can still relate to a lot of the stuff I wrote in it, and maybe you can too.


I bought you the soups that you like, they are in the cupboard where we keep the soups and stuff. I don't know why you won't let me go, I don't understand what you are holding on to. There is NOTHING here! I am nothing, I have nothing, my future is nothing, my past is nothing, I have nothing to do, no point to still being alive. The only way I know of to make you hate me enough to let me go is to do something stupid so you will hate me. I know you hate what MS has made me. I know you hate that I don't work and do not keep the house perfect. I know you hate that all I can do is spend and run up bills. I know you hate my tiredness, that I go to bed early and that I do nothing but puzzles. I know that your hate is going to grow until we only make each other miserable. I know that you have that seed of hate for me deep in you, ever since I was diagnosed and you saw what the effects of my having a debilitating disease would do to me, that I could no longer be counted on to make a fortune, that I could no longer help out. All I can do is consume, consume food and products that are sold cheap at Walmart. All I can do is buy, spend, make more problems for you. I can't make you understand how much I hate myself for all this. How my nerves are rattled when I think of you coming home to me and seeing your hate for me grow. Seeing your anger when I am tired or when I am not walking perfectly in public, when it is obvious that I have something wrong with me and you have to be seen with me. You don't think I am bad enough for Novantrone, but you don't see how this MS is chipping away at me and slowly destroying me. You say you are willing to go through hell with me, but only if I am presentable to the public, you don't want them to see me as I am, gimping and lagging, not as fast as I used to be. You can't accept that I am not what I was, that I get tired, that I need rests... I know that you are hating me more as the days go by and nothing gets better, I want to be free of your hate. I want to be free from trying to live up to what you want me to be, I want to be free of the pressure of pretending to be what I am not. I don't want to push myself to be "perfect" for you, it wears me out and makes me worse. The stress is not your job and you being gone, the stress is you coming home and my having to be what I am not when you are here. I hate myself and want to free you from all responsibility for me... this is the only way I know how. You are now free from me and having to be chained to something that shames you. Go and find someone who is all the things you want, all the things I can't be. I have nothing to offer you. I have gave my all and am tired of pretending to be what I am not. I am freeing you and me by this....... [Blindbeard]

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.

This Email I Got

I'm sharing this because it is really interesting and puts a ton of things into perspective. Sometimes I really need to remember how much bigger everything is compared to my problems -- not that I don't know that, I just like to be reminded. I took out the cheesy text because this speaks for itself.

Pity, Party Of One, Your Table Is Ready

Yesterday I held a pity party for myself, against my own will. I tried to fight it but it wouldn't go away. Coming off of Tysabri and doing the oral steroids, I was hurting, irritable, edgy and unable to get any sleep. I did the steroids for 3 days and decided that the side effects are not worth it. My mouth tasted like I was sucking on an old penny that had been soaked in Robitussin and no matter how many times I brushed my teeth or ate mints, it wouldn't go away. I called my neurologist and told her this, my history of suicidal inclinations was in my favor, I am not going to finish my 5 days of steroids and the plan of having me do steroids for the next 6 months until Copaxone reaches its therapeutic levels has been scrapped. While trying to find a way to get my body comfortable, I spent too much time on Facebook and read all about every one's hot plans for the weekend, which sent my pity party into full swing.

For games I decided against Monopoly and went for Pin The Self Loathing On The Gimp. I fell into the old Why Can't I Be Normal trap and went round and round with that. I didn't want to admit it, but I was jealous of those who can go and do things, especially at night when I am counting down the minutes until I can go to bed. I want to jog again, walk my dog, read half the night, be able to keep up with Princess, shop all day with Sugarbowl. I want to be normal and feel like a 35 year old woman, not a 95 year old woman. I want to join in all the reindeer games and be able to stay up too late and rock it with a lampshade on my head. I do not want to be ME anymore. I hate the fact that MS has all the say over me and if I try to fight it I only hurt myself worse. If I try to push myself too far, I get too tired and my muscles start shaking, that overwhelming fatigue where if you don't rest you run a HUGE risk of hurting yourself.

Ugh! I have to stop this pity party NOW because I am only irritating myself more. Every once in awhile I have to vent this stuff and be with it so it can pass and I can get back to life. I hate feeling this way and I HATE feeling sorry for myself. It makes me even more of a bitchy jackass then usual, and nobody wants that. Luckily, my roomies were not interested in coming to my party and decided to tease and harass me to keep me from taking myself too seriously, so I do feel a little better and even started to laugh at the way they were walking like me and stumbling over everything while forgetting what they was doing 5 minutes ago. When holding a pity party, it is best to invite those who will not join in on the pity. I still wish I could party all night with a lampshade on my head, but at least I can admit that my dancing would look like the tin man in a rain storm and that image amuses me and makes me feel a little better.

Fabric Of My Soul

If you could take apart yourself, strip everything down to just your soul, what would be the very core of who you are? Your biggest passions in life. What makes you you, or makes you tick. The very fabric of my soul is 3 things. Just these 3 things that if I got rid of all the superfluous stuff would be left.

BOOKS!

The printed word is -- pardon the pun -- printed on my soul. I cannot be without a book or I get restless and crabby. I am a huge reader and will read anything if I can't get my hands on something better, even Sugarbowl's teen crap or my older sister's sappy romances. I never read just one book at a time; I'm always reading at least 2, although that feels like almost nothing to me. I like to read 3 or more, or I feel like I'm not getting any reading done. I can't understand people who don't read. It is incomprehensible to me. What do you do if you don't read? How do you go to sleep at night? No matter how tired I am, my eyes must go over printed words for at least a paragraph or it takes me way too long to get to sleep. A world without books would be a very dreary place and not a place I would want to live in.


Old Houses/Antiques

I love old abandoned houses. I love to photograph them and just take my time appreciating every last detail. They make my soul sing. I know that sounds cheesy, but it's true. I like to go alone and just let the house speak to me without someone else jabbering in my ear, which makes my family nervous, hence why I have a cell phone now. I like the antiques/houses of the common man. I can't relate to the rich and upper classes, being a common woman myself and assuming I would have been in the middle no matter what age I was born in. When I can get away and tear up crappy back roads, I am in heaven.

I love to go antique shopping and could spend all day looking at the old pictures. I have several old albums that I fill with the pictures that spoke to me and that I couldn't leave behind to molder in an antique store when they so obviously needed to come home with me. I have spent a lot of time studying fashions of the past 150 years so I would be able to date the pictures and know what I was looking at. It's amazing the great antiques you can find at a Flea Market or even garage sales and I am always on the look out for anything old -- except old men, sorry, gramps.


Princess

That's right. I love my family like nothing else, but Princess is the light of my life, the apple of my eye, the cream in my coffee. If something happened to that little girl, I don't think I would survive it. I don't want to live in a world without her. That world would cease to have anything for me if she was not a part of it. Yes, she drives me crazy, but I love her like nothing else. She doesn't believe me, but it's true. I would most likely off myself if something happened to her. I don't tell her that, but I do tell her that the world would have nothing to offer me without her an inhabitant on it. She can get me every time. She doesn't know how much she could really get out of me and that is a good thing, because I cannot resist that little girl.


I am very curious about the fabric of your souls, so please do tell. I like to know what makes other people tick, and please forgive me such a serious subject. I don't know what came over me. Probably this great book I'm reading, the old house I drove by yesterday, and Princess's sleeping face in my bed, reminding me of her sweet little face as a baby.