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.

Announcements

I have a few announcements to make, then it is back to all those fun things you were doing before I interrupted you. I'm such a killjoy.

*I think I'm having an attack. The pieces are coming together, like some rotten puzzle I would rather throw out than put together. Or like unraveling a big cable knit MS sweater that someone keeps on knitting, and knitting, and knitting, and KNITTING! (Sorry, just watched Pee Wee's Big Adventure.) It would explain why I was so slumpy for so long. I get this feeling when I'm getting attack-y. Like a mild bout of depression mixed with an amazing amount of fatigue. I let it simmer on the couch until new or worsening of old symptoms develop. I have been so wiped out, with no corresponding activity to explain it, that I am having a hard time staying awake, and that is not me. I'm falling asleep by 6:30 pm, after taking a 2 hour nap in the afternoon, then going to bed and sleeping until 4 am. I should feel well rested. But I don't. I only feel like I need a nap. My legs feel thick and hard to control, and the worst of all, I'm having itchy spots that feel like I'm wearing wool on a hot summer day. They crawl and tingle and feel really gross. Adding this all up, I decided I was going to have to take one for the team and call my neurologist.

*I should have waited until today to call her, instead of yesterday. It was my lucky day! They had a cancellation and I could haul my happy arse downtown to see her! I had already hauled my happy arse in to see my pain doctor for my hug, and he gave me a muscle relaxer that is not as sedating, and turned out to be manna from heaven, so I had Sugarbowl drive me, being deep in the throes of manna from heaven. I talked to my neurologist's nurse, and here is the problem: I cannot tell any story that involves her without adding the important fact that she has the most thick, luxurious mustache ever seen on a woman. Sugarbowl asked me if she was married, but I have never been able to tear my eyes away from her glorious mustache to look at her hands, so I don't know. But who wouldn't want to marry such a woman?! I guess a man who can't grow a great mustache and would feel inferior to her, that's who. Anyhoo, I told her that I knew my neuro would want me to pee in a cup and give another vial of blood, even though I have never had anything wrong with me whenever I am having MS problems, but I suppose it gives her pleasure to tell me that I still have MS. And I was right, she did want more of my pee and blood.

*Going to give more of my bodily fluids, I walk up to the desk and tell the receptionist that I was there to pee in a cup and have blood taken. She told me that I needed to get back in the elevator, go down this long hall, get into another elevator and take it to the third floor to the lab. Being in pain and cranky, I didn't bother to read the sign on the wall that said "Adult Intensive Care." She thought it was great and said that she doesn't get to see people that are so responsive very often, so it was a nice change of pace. She talked for so long, I about gave my urine sample to her floor. Sugarbowl enjoyed it so much, she was still laughing about it by the time we got to the lab, which was down a long hall and up another elevator.

*Nothing new about my neuro. Same ol' same ol'. She pooh poohed me as always, and even though Sugarbowl said I was bitchy, I thought I was being nicer to her than usual. I let slide the whole, "last MRI didn't show any lesions," without going the rounds about the inaccuracy of spinal MRIs. Sugarbowl says that if I am so unhappy with my neuro, I should find a new one. I agree with that, and some days I swear I am going to do it, but I do enjoy my anger with my current neuro and would hate to give up that pleasure. Besides, I feel like if I don't call her on these things, she may never learn and keep subjecting other unsuspecting saps to her old school ideas about MS. I want to ask her if she has to do continuing education and suggest some reading materials for her if so, and some reading materials if not.

*The last and most important announcement is that in the doctor's office, waiting for the nurse to come back with my MRI appointment -- did I mention that she has the most thick, luxurious mustache ever seen on a woman? -- I announced to Sugarbowl that I was craving KFC because I needed to swim in a bucket of coleslaw. She being the best chauffeur and sister EVER, got KFC on the way home, so I got to swim in my bucket of coleslaw before falling asleep on the couch by 6:30. I'm still picking cabbage out of my hair. I am a happy gimp.

Dear Blindbeard: The "It's All You, Mustanginblue" Edition

Dear Blindbeard,

I tend to have most suicidal thoughts when I think about how moronic the majority of people are. Since I can't take all the morons out of the world, I could instead take myself out and not have to suffer them anymore.

You know, now that you (well your sister to be exact) brought it up, I think I'd like to be embalmed and have my brother and sister have to display me in their homes all their lives. They could trade me off every Christmas! I could be posed on the couch and drunk guys could cop a feel and then later tell my sibling "Man, your sister's hot but kinda stiff."
(Truthfully I,too, want to be cremated and then thrown in a ditch for all I care.)

Mustanginblue


Dear Beautiful Mustanginblue,

This comment made me laugh so loud, and at such an early hour, Sugarbowl yelled down the stairs at me to "shut the hell up because some people have to work." In fact, I love your idea of being embalmed and displayed in various relatives houses so much that I may have to put that in my will. I may even add embalming my dog, too. They could prop me up in the yard in a twisted kind of nativity scene with my dog as the baby Jesus and me as one of the barnyard animals. That's pure genius and you have my undying admiration for coming up with such a fabulous idea!

As to the first part of your comment, I had an epiphany the other day about the "other half" of this world's population -- well, I guess we gimps are in the extreme minority, but that is beside the point, along with hair gel. When shopping recently, and feeling irritated with how people's eyes skitter off when you catch them checking you out, I thought, "Be careful, Honey, it could happen to you." And that is when the epiphany struck. In the blink of an eye, in less than a blink of an eye, something could befall you and you would be in the same rotting boat with me. You could get in an accident, get a stupid disease, heck, even break your leg and never walk the same again, then how would you want people to treat you? While expounding this point, and working myself into a lather, to Sugarbowl, she said that she had been meaning to ask me how I do want people to treat me. I asked her if it was her, how would she want to be treated? She said exactly like everyone else, but she still wasn't sure how to treat them. I asked her how she treats everyone else, and she said she tends to ignore other people, so I told her to ignore them, too. And please, for the sake of all that she holds holy, if you do meet their eye and get caught checking them out, don't try to act like you weren't. At least smile at them, or do something that doesn't make them feel less than human. I think that is what bothers me the most, that they won't meet my eye and that makes me feel like I'm less than human, whether they feel that way or not, that is how it makes me feel.

Love,
Blindbeard


Dear Blindbeard,

What are you reading right now? That is my question.

Mustanginblue


Dear Beautiful Mustanginblue,

What I am reading right now is an eclectic blend of all things really good. Something about the cold weather makes me want to curl up with some good fiction. Summer I tend to read only historical nonfiction, but when it starts cooling down, I need a good story to sink my teeth into. I did not have any fiction around that I have not read umpteen thousand times before, so I asked Princess if she had any good books I could read. She has been reading The Sword of Truth books and suggested I read those. I had this preconceived notion that they would be some romantical fantasy junk that wouldn't hold my interest, probably due to the cover art that looks like some romantical fantasy junk kind of books. I don't mind some fantasy; I enjoy books about worlds where odd things are the norm, so I figured I would give them 100 pages -- what I give every book to see if it grabs my attention or not -- and then try something else, because I'm not into romantical fantasy junk. I can admit when I'm wrong, and I was WRONG WRONG WRONG about those books! I have been sucked in and don't care if I never come back out. Luckily, there are 11 books in the series and I just read that he signed a contract to write 3 more, so I may never leave that world. I'm on the 3rd book and it blows my mind how someone can come up with these ideas, keep introducing new characters and story lines that are just as good as the first ones he had. The author, Terry Goodkind, is originally from Omaha, Nebraska, and that makes me proud. It's nice to have good things come from your state instead of embarrassing things.

Other than that, I'm reading about local history and was pleasantly surprised to find out that I live in a place steeped in interesting history. The town I now live in was a stop on the Mormon trail, and is only a few miles from a sacred Native American site that I have no intentions of burying my dead in for fear they may come back and kill me, like in Pet Semetary -- YIKES! I also found out that the house I live in was once a grange hall outside of town, which they moved in and used as a library for years. They also had a stage on the side I live in -- it's a duplex -- where they would put on plays and other programs for the town. Very cool.

So that is all the stuff I'm reading right now. Hope you aren't too sorry you asked.

Love,
Blindbeard

The Paradoxes Of MS

Right now I can think of 2 major paradoxes of MS. I'm sure there are more, but these are the 2 that are torturing me at the moment.

1. I'm always tired but I can never get any sleep. Sure, I sleep for about 5-6 hours a night, and sometimes I can squeeze in an hour nap, but more often I can't get any decent sleep. I probably wouldn't even get those 5-6 sub par hours of sleep at night if my night meds didn't knock me out. Even in the haze of my night drugs, I still get up 2-3 times to pee each night. I have cut down all liquids after 6 pm, but my bladder still wants me to get up to drain those 3 drops that it has produced in the 2 hours since my last bathroom visit. I wake up throughout the night and check the time to see how much sleep I've gotten since the last time I checked the clock. It's never as much as I had hoped to see. And lately, I have been getting up in the 3's instead of the 4's as I used to in the days of yore. I try and stay in bed until 4, but it is a struggle. One morning I spent 25 minutes messing with the dogs before I had to raise the white flag and get out of bed. In those 25 minutes I got the dogs so wound up by plucking hairs off their fluffy buns and trying to stick them up their noses, that it was get out of bed or risk being covered in stinky dog spit. I chose to get up with only 75% of my body covered in stinky dog spit. I didn't want the dogs to start plucking hairs off my fluffy buns and try to stick them up my nose. I can dish it out but I can't take it.

2. My MS Hug squeezes me so tight that the only way to get any relief is to wear something tighter. Across my back and chest, right where a bra strap goes, is a line of pain and tightness that is only made bearable by squeezing the sh*t out of it. I have been wearing my tightest cast iron sports bra to help ease the pain. It is so supportive that I could use a jackhammer all day and not get the slightest jiggle out of my unmentionables. Even now, I have an Ace bandage wrapped so tightly around my chest that I can't draw a deep breath, but if I don't wear it, I can't draw a deep breath from the pain and tightness from the hug. I have Sugarbowl and Princess beat on my back and rub it as hard as they can. The pure ecstasy from that makes me moan and groan like I'm in the deepest throes of passion -- not exactly something I want to do with my sister and niece. They are good sports about it and take turns so one can rest her arm while the other beats the crap out of me. Sometimes abuse feels sooooo good! Sugarbowl is the best when it comes to any MS related help I need. She has the arm support thing down just right. She understands that I need a strong arm that I grab, not grabbing my arm like my mom does. My mom grabs a hold of my arm and runs off, dragging me behind. Sugarbowl lets me take her arm and lets me set the pace. You would think that a woman who works in a nursing home would know better than to drag a gimp along, but she hasn't figured that out yet. Sugarbowl also has the beating of my back down to a science. She knows to work it across the line of pain with a combination of hard rubs and deep pounding of her fists. I was in so much pain the other day, but she had to go to work, and I wished I could afford to pay her to stay home and work me over like she was tenderizing meat. Alas, I could not afford to have her stay home so I wore a corset of Ace bandages all day, waiting for her to get back home and abuse me some more.

Like I said, these are the only 2 paradoxes that come to mind right now, only because they are the 2 that won't let me forget they exist. If you have others, please let me know. I'm always interested in others' sufferings, even though I feel like I'm running a huge risk by asking. I'm afraid that my body will decide that it needs to add those problems to my already impressive repertoire of pain and agony.

P.S. I am trying to put together another edition of Dear Blindbeard, so please send me any questions or comments you would like to have me respond to. Or any you would not like me to respond to; it's all the same to me.

Memories

Last night my little sister, being an unending font of wisdom, had left her window open all day so she turned up the heat to warm up the upstairs. I was already in bed, sleeping happily in my refreshingly cool bedroom, when she decided to do this. I woke up drenched in sweat with nary a blanket left on my bed after kicking them to the floor, convinced I would have to fight my way through tumbleweeds and cacti to get to the thermostat to restore breathing air that didn't dry up my poor nostrils. After turning the heat back down, I went back to my sweltering bed that reminded me of the hottest days of summer. I spent the next hour thinking about the lakes that we went to all summer, and wondering if I should pack my beach bag and head out to cool off. Ah, the lakes! What a great time that was. We had too much fun there. If we weren't trying to avoid those consummating their love in the water, we were having seaweed wars. Past the buoys, there grows the most fabulous, stinky, thick, luxurious field of seaweed. The trick is to get a massive amount, sneak up behind your prey, and dump the mass onto their head. You had to be on constant high alert or you risked being buried in a heap of that stuff. One weekend the place was swarming with whippersnappers who were way too mature to enjoy the natural games the lake offered. The girls, looking better in their bikinis than I have in a long time, were playing Frisbee while the boys tossed a football nearby, all trying to act like they didn't know the others were there. We were amassing piles of seaweed to destroy each other with and laughing like a rabid pack of hyenas when successful. Or picking seaweed out of our hair when unsuccessful. I'm sure all the whippersnappers were having a good time, but I'm even more sure that we had a better time. Nothing insures a great time more than the air thick with flying seaweed.

What would have been my 9 year wedding anniversary just passed. Depending on who you ask, the date would be either the 3rd or the 4th of November. It is actually the 3rd, but my ex, another font of unending wisdom, when filing for separation, put the date as the 4th. I called him to ask what our wedding anniversary is and he said, "The 4th!" as if he was 100% sure of the answer. I was very kind in my verbal abuse when I told him it is the 3rd. The man kept getting my birthday wrong when we were first dating. His ex's birthday was just a few weeks after mine so he kept switching the 2. One day, while he was sleeping, I took a permanent marker and wrote the month and day on one thigh and the year on the other. He found it very funny and has never forgotten my birthday since. I told him he was lucky I wasn't there to write our wedding anniversary on his legs. I can't think of my marriage as a failure because he and I are still friends, still meet up, and he still thinks I'm the best there is in this world. I swear I only keep that man around for egotistical reasons. He cannot believe that men are not lined up outside my door waiting to date me, and thinks I only wear a swimsuit around him to tease him, not to swim in. Never mind that we are swimming and he is the only one who would think me in a swimsuit is alluring, it is the only reason that makes sense to him. The only reason he filed for separation is because he wanted to buy some land and didn't want the hassle of having me have to sign the papers. He also doesn't want to leave me without insurance, so he isn't filing for divorce for that reason too. He and I understand that when we don't hate each other -- we do get mad at each other -- we still love each other. It also helps that he is always on my side and I can count on him to help me out when needed. Like when my car broke down, he called the repair shop to give them his credit card number to get it fixed for me. When he is not annoying the piss out of me, I kinda love him still. Dagnabbit! I'll never be rid of that man.

My mom manages my finances for me because some days my head is so fuzzy I don't keep track as well as I should. She also wants to make sure my money lasts for as long as possible, so she keeps me on a very short leash. I get a little tired of my short leash, to put it very mildly, so we had to have a talk recently. I let her know, as gently as possible, that it is not her, it's me. I want my freedom to see other mothers and am not sure I'm ready for a relationship of this magnitude yet. The nursing homes are full of mothers who need a good home and I felt that I should try others to see if she is really the mom for me. She found it all so funny that she said she would give me free access to my money and when it ran out, that was it and she wouldn't help me out. I was moved by her pleading so I decided to give her another chance. Now she stole my joke and threatens to breakup with me whenever this subject comes up. She also likes to tell everyone about how I wanted to breakup with her, but she leaves out her begging and pleading and my relenting. Yesterday, while Sugarbowl was talking to her, Sugarbowl told her some things I didn't want her to know and she started talking divorce again. Sugarbowl told her to think of the children! They have no choice in the matter and should not be made to suffer because of our little disagreements. We need to keep it together somehow and maybe couples therapy is something we should look into. Sugarbowl doesn't want us to divorce because my mom pays our utility bills and she pays a lump sum each month that includes all those bills. If my mom and I divorce, she would be paying more to cover all our expenses. I tell ya, if my mom doesn't watch her step, I am going to start frequenting the nursing homes and she will be out on her tight fisted rump with only memories to hold on to.