Round 2

*Update: We caught Princess' leg in time and after 2 days of high dose IV antibiotics we were declared safe to go home, especially as they know that if anything changes we will race her back in. Her appetite has returned with a vengeance and I told her that they only discharged us because they can't afford to feed her anymore. That and we were getting too noisy -- we were messing around and fighting for space on her bed when I tried to share it with her. I also oiled my hamster's wheel so I actually got almost 7 hours of sleep last night! (I know you were on the edge of your seat wondering if I would ever get around to it, so I wanted to set your mind at ease.)


*Author's Note: I forgot to mention that I will be working on smoking myself retarded again, and I mean that in the PC dictionary term: a total slowing, stunting of my mental processes, not as a derogatory word for anyone. Princess' room is on the 6th floor and they are working on some construction right outside her window with a huge crane, and we love watching them haul their cooler up and down each day. I want to get a case of beer for them to haul up and watch people's reactions to that.


Just as we were celebrating Princess' return to home, her leg started up again yesterday. The cut started weeping again and her leg started to get red and hot. Sugarbowl took her to the E.R. and they admitted her again. This time they are talking about doing exploratory surgery to see if there is a foreign object in her leg that is preventing it from healing. Good thing the lazy arses didn't unpack a darn thing yet, so all Sugarbowl had to do was drag it out of her room and pile it up in the living room, ready to haul it back in and take up residency in their room again (she got the same room). I unpack almost immediately whenever I return home from anywhere that I had to pack to go to. Even if I can only start it before I have to collapse in bed, I hit it first thing in the morning -- after my coffee, of course. Sugarbowl can't afford to lose another week of work because we are too poor, so we will be tag teaming it this time. I will stay with her most of the time and Sugarbowl will come when she can and relieve me when possible. So depending on my boredom levels, which promise to be sky high, I may blog more or less. Sometimes when I get too bored I can't do a thing but think about how bored I am; other times I have to do anything to keep from becoming destructive and destroying everything around me.

I didn't get any sleep last night. I was worried about Princess and had bad dreams all night. I laid in bed for most of the night with my beady, blood-shot eyes wide open, listening to my hamster run on his very squeaky wheel, wondered why I hadn't oiled it yet, and resisting the urge to tell him that his buns and thighs should be perfectly toned by now and he is more than ready for swimsuit season. I tossed and turned and broiled alive. I had to push the little dog off of me before I split my skin like an over-cooked hot dog. I got up to pee about 500 times and mashed pillows over my head to block out the horrible squeaking of his hideous wheel. I had visions of what this house will look like by the time I came back -- making me sweat even more -- and pondered whether I should leave a list of things that need to be done and not left for me to do when I get back. They will never see overflowing trash cans, sinks stacked to the ceiling with dirty dishes, the pets' empty water bowls, mountains of dirty, wet clothes left on the bathroom floor... I shudder to think of it all. They will sit on a pile of garbage, watch TV and never notice all the crap they are sitting on should not be there. Walk over all the clothes on the bathroom floor, forget to put down a towel when they shower, get the whole mess soaking wet and slow down my getting new linoleum down.

I hope Princess gets better soon and that the house doesn't resemble a garbage dump by the time I get back. I don't want to have to explain that we are not taking any more loads of sh*t, so please go to a different dump.

Unfresh

*Update: Princess is home from the hospital! YEA! This house stayed way too clean without everyone going behind me and messing it up. I didn't know what to do with such a clean house, besides enjoy it -- very odd! My stress level has returned to normal, which is good. I smoked myself completely retarded and my MS Hug held me in an even tighter grip while I worried about her.


Sorry for my prolonged silence. Believe it or not (great show!) we have not been having computer/Internet problems. I know, I know, how shocking. I wish it were that. Princess is in the hospital for a cut on her leg that went awry. She scraped both legs in basketball practice about a week before all this hullabaloo, one leg healed up, the other... well, not so much. It kept getting worse and Saturday she spiked a temp of 105, scaring the turds out of us and insuring herself a tepid bath. It took 45 minutes in the tub before her temp came down. Sugarbowl took her to the doctor the next day and they admitted her to the hospital right there. She is on IV antibiotics and has not been responding -- or her leg to be exact -- to them. They are now trying a drug that is not FDA approved for children, only adults, but Sugarbowl decided to do it because something needs to be done. The good thing is that while on this drug, and participating in this study to help get it FDA approved for children too, the costs for administering this drug and her care are covered. She has been in the hospital since Sunday and her earliest release date is Friday, if they see some great improvements, and even then she will probably still need IV antibiotics and home health to do those. It kills me to see her go through all this and I now understand my mom wishing she could take MS from me and go through it all herself. I would take this in a heartbeat if I could; I would take it before giving it to any of my family. But, alas, I can't.

Why the title of this post? So glad you asked! Let me tell you all about it:

*While we have been spending an ungodly amount of time in the hospital, the dogs have been left alone. The little dog apparently doesn't like to be left alone. The first day he got ahold of a decorative couch pillow and ripped all the stuffing out of it, making the living room look like a snow storm struck in just our house, and making me soooo happy to come home to that. I didn't learn my lesson and put him in the kennel the next day when I left, so he decided to move on to bigger things. He ripped off a huge chunk of the linoleum off the bathroom floor, exposing a serious mildew problem under all that hideous 70's flooring. I removed as much of the linoleum that I could without the proper tools for the job, and have been letting it dry so we can put down new linoleum. I hate that musty, unclean, unfresh smell of moldering ugly linoleum that has taken over the bathroom. After seeing all that, I couldn't help but think that that may be helping Princess have a putrid infection in her leg. I hate sub-par housing and am so glad we are moving next month -- after replacing the flooring, of course.

*My dog had a seizure, just before all this happened, that went on for almost 30 minutes. I gave it a chance to quit on it's own, but when it didn't I had to do something I really didn't want to do: I had to administer Valium rectally. I put on cleaning gloves because I didn't have any latex gloves, which I have now invested in for future use, and lifted his tail. I felt so dirty having to do it, but it was a labor of love. We keep track of his seizures to see how long they last, how often he gets them etc. And on our chart of Gussy's Seizures, Princess wrote how long it lasted and that I put "medicine up his butt." Glad we will have that charted for posterity.

That is my update for now, I will keep you informed of how everything goes and if I have to lift my dog's tail again. I really hope not.

Potpourri Of Irritants

I am one big stewing pot of irritation. I am trying to be patient and breathe deep before I attack, but when one is hurting it tends to shorten one's patience. At best I am extremely uncomfortable, at worst I am in an ungodly amount of pain that prevents me from forming coherent thoughts and getting any kind of rest. I couldn't find a place in my bed that had any comfort in it last night, so I tossed and turned and got up way too early to keep my pain company, because it was obviously lonely. I saw my neurologist yesterday and my little sister came with me, which turned out to be a good thing because I needed someone to restrain me. I had to go to the lab first and have the blood suckers suck some more of my blood, because the umpteen billion samples they have recently taken were apparently not enough. I sat in the waiting room so long I wanted to ask the receptionist if they were back there forging needles from a fire, but Sugarbowl wouldn't let me. I had to give another urine sample and have now wiped myself down with so many antibacterial moist towelettes I should be free from any V.D.s for the rest of my life. After all that fun, we had to walk back across town in their heated tubes over the main city streets back to my neurologist's office, where we had to wait for half an hour to get in. While waiting, I helped myself to an array of their magazines that I felt I may want to read someday... or not, but I took them anyway. I didn't even bother to try and hide my filching, just walked out with my arms stuffed full of their crappy magazines. So if anyone is interested in Garden & Guns let me know, I have the latest copy. We finally get to see the holy, sainted face of my neurologist and by then any good humor I had (none) has run off with all the pain meds I had taken earlier like the little whores they are. Sitting is painful because I don't want anything to touch my back, so I sat hunched over in the chair in an examining room trying hard not to tap my fingernails in a blatant show of impatience while Sugarbowl tried to keep me calm:


Blindbeard: What the puck are they doing? Organizing all their patients' charts by the amounts of blood taken? That should make me first in that pile!


Sugarbowl: Knock it off! They're probably really busy!


Blindbeard: Sooooo glad we raced down here to wait 50 years for them to pluck their nose hairs before they can see me!


Sugarbowl: If you don't stop it, I am going to restrain you and stuff a dirty sock in your mouth!


Blindbeard: This is BULLSH*T! I think I just saw the janitor go by and the lights are going off! Is she dictating her reports first then seeing me after?!

Sugarbowl: Be quiet! They might hear you! Don't make me bitch slap you, Bitch!

After plucking her nose hairs and dictating all her reports from the last month, my neurologist finally remembers I'm sitting impatiently in an exam room waiting for her to sail in, and sails in. I tell her all about the painful band around my back and chest, and she makes a nearly fatal error by telling me that what I am referring to as the "MS Hug" is not how it is usually "presented." Feeling myself turning green and on the verge of huge muscles popping out and tearing my clothes into shreds that miraculously still cover my delicates, I tell her, "Oh really? When I looked it up on the Internet, I found a lot of people describing it exactly as I am "presenting" it!" She conceded that I may be right, which I'm sure killed her to have to admit a person living in an MS body might know how it feels to have MS a teeny bit more than someone who got their information out of a text book. She ran me through the whole examination process and poked me with a bunch of toothpick-like things all over my body, which I found extremely annoying and wanted to shove them up her Uranus and ask her if they felt the same on both sides of her rectum walls. She beat me with her rubber hammer to check my reflexes while telling me that it was highly unlikely that I could possibly be having an attack because I'm on "Tay-say-breee." I resisted the urge to grab her rubber hammer and crack her upside the skull, and instead told her that many people DO have attacks on "Tie-sa-breee;" it does not have a reduction rate of 100% and therefore it is possible to have attacks. Again, she admitted that I was right, and I'm sure she had to resist the urge to hit me upside the head with her rubber hammer.

I had an MRI done last night and am awaiting those results. They wanted to do an ultrasound too, but unless they are going to ultrasound my boobs (where the pain is, along with across the middle of my back), which I highly doubt, I am not interested in going that route unless I have to. I have been really thinking about finding a new neurologist, but my current one is in the MS clinic that is supposed to be the best in this area. I need a neuro that takes me seriously and doesn't try to tell me that what I'm feeling is not what I'm feeling. I was feeling bad about ditching her and finding someone new, but that bad feeling is fading quickly as I deal with this pain that she tries to tell me is not what I know it is -- extremely painful and not normal for me. I hate her.

The "MS Hug" Or Girdle

I didn't want to give this post a clever name because I want people out there who are in the same ship o' fools as me to be able to find someone else in the same predicament. Whether my evil plot (camera pans over to me manically laughing and rubbing my hands together)
will work remains to be seen...

The pieces of the puzzle are starting to fall together. I have had this back pain for over a week now and my kidneys are not behind it all (darn it! Should have known it couldn't be as easy as acute renal failure). What started as a pain in my back has slowly, insidiously, and evilly spread around my chest in a painful band that is ironically called "The MS Hug" -- a name that is a cruel attempt to make light of something that is not like any hug I have ever had or ever want to get. It took me a while to figure out that that is what is going on. I've never had this before and I had one heck of a time finding any information about it. I tried to find something about it in the Multiple Sclerosis Owner's Manual (not the official name) that I got from my local MS chapter shortly after diagnosis, but it only glossed over it and didn't go into any detail. In fact, I got the impression that it was just a tight band around the chest with no pain involved -- stupid owner's manual! I hauled out all the books I have about MS, which is too many in case you were wondering, and was able to get some vague answers that lead me in the right direction. I did a search on the Internet and tried all the "official" MS websites and again found glossed over definitions about this damn girdle that won't ease up. But the good news in this dung heap of a symptom, is that I did find good information from others with a way with words and having the same nefarious problem. My fellow MSers, I apologize for not coming to you first. I should have known "The Establishment" wouldn't know f*ck about sh*t when it comes to living in an MS wracked body. Am I coming off as angry and bitter? Good! Because I am! Pain has a way of making one cross and ready to be euthanized.

Anyhoo, on to my problem. I have this tight band around my chest, just under my breasts where my bra should be fastened but I can't wear a bra right now because it hurts too bad. It is an uber pins-and-needles sensation with stabbing pains down into my abdomen and lower back. My back hurts to the touch and even sitting here is killing my back. I have been taking hot showers to try and ease the pain and subsequently draining the hot water tank, much to my roomies pleasure. Heat is not my friend in general, but I am hogging the heating pad in an attempt to calm "The Hug." (My little sister uses the heating pad to keep her red eyed tree frog warm -- or did.) It makes me not want to eat anything because my abdomen feels too tight to put anything into it. I feel like I can't draw a deep breath because it is too constricted and if I try it only sends more shooting pains. It is miserable and underrated because this is a serious pain. The only good thing about it is that I don't feel my trigeminal neuralgia with so much pain in my back and chest. But instead of waking up with a hideous pain in my face, I am kept awake by this "hug" and made all the more irritable by my utter inability to get any rest. I already take an ungodly amount of Neurotin for my TN so I thought that would help all this girdling -- ha ha and HA! I am pacing the floor waiting for the time when my neurologist's office opens to see what can be done to give me some relief and I will not accept any brushing off of this new problem. She doesn't want me coming in there with a battling ram to get something -- ANYTHING -- to ease this pain. If she thought I was an obstinate pain in her behind before, she is going to get a huge surprise when she has to deal with me in pain that is reaching the 10 point on her scale o' pain. I'll keep you posted on whether she lives through this or not.

Love and kisses,
Blindbeard

P.S. This may go without saying but I like to say redundant things anyway: I would love to hear how anyone else dealt with this problem and what worked for them. I am on the verge of chewing through the pharmacy walls if they won't give me some kind of pain medicine and helping myself to anything I can find. Ahh, the joy of MS! The gift that just keeps giving.

Meaning Of My Spongebob Quote

Or what it means to me at least. I like that quote because it leaves so much open to be interpreted. Maybe it means nothing to you -- and I respect that -- but to me it says that it just is. It doesn't matter where you put the wood shavings of life, they will still be wood shavings. Not necessarily bad wood shavings, just wood shavings (or chocolates if you would rather relate to Forrest Gump instead). Something I repeat to my family often when they bemoan my fate because, believe it or not, I try not to bemoan with them because it just is and all my bemoaning won't change a thing. Yeah, most days it sucks, but it just is, there is nothing to be done about it but shuffle my wood shavings into whatever receptacle is most fitting for my mood, whether that be a bucket, pail, toilet, barf pan or even a bed pan. I never really had the "why me's" because I can only answer myself, "why not me?" I wouldn't give this to anyone else regardless of how I feel about them. Not even my worst enemies because then I would have to feel a measure of sympathy for them that I am not willing to extend.

My mom always says she wishes it were her instead of me that got the MS, and I always say, "what a load of MANURE!" My mommy has her BSN in nursing that she got in extremely difficult circumstances. After my dad walked out she worked full time and went to school full time to try and make our lives better by being able to provide for us because my dad tried to get out of paying child support and was very successful in avoiding it for many years. (Wow. That was a run on sentence that could rival Defoe's record for Most-Words-With-The-Least-Punctuation.). She donates blood as often as possible, she volunteers with the Red Cross, and even does volunteer work at local schools. She is not someone who needs to be limited by MS. I never did any of the above and, the way I see it, I have less to offer (due to my selfish, lazy nature) then she does. She does far more for this world and all who inhabit it then I do, and it would be criminal to give her my MS just because, as a mother, she would rather take on the all bad things that happen to her chicks (she is a total mother hen).

No matter what it does to me, it still just is. The good, the bad, and the ugly -- and it can get very ugly (steroids anyone? Especially after 5 days of being revved up to superhuman levels, then the crash that leaves my unable to move off the couch for a good 2 days afterwards.) I'll admit I enjoy my bad attitude; I enjoy wearing it like a loving cloak wrapped around me; I enjoy the energy it gives me to push the limits of what I can and cannot do; I enjoy the humor it gives me to deal with this disease, even if I'm the only one amused; I enjoy the choice of where I want to put my wood shavings each day. It's a quote that really speaks to me. It says, "it just is, Blindbeard."

Celebrate? Grieve?

*Update: I have to agree, nothing can compare to King's early work. The Shining and Pet Cemetery scared the bajebus out of me, heck, even It had my hair standing on end until that ending (a big spider?! Really? That just does not scare me one iota.) But for a good story that pulls you in, I have to say that Koontz is hitting that mark for me still and I am now on book 4 in that box o' books. I am also willing to concede that maybe all his books are not as good and I got lucky with the ones I got in that box, but so far so good.


Today is my 4 year anniversary of being diagnosed. Not really sure what one should do on such a day. I certainly do not want to celebrate, yet I don't really feel like grieving either. How does one commemorate such a day? That is the big question. I am working on a little poem-type thing for this occasion, but am not done with it yet, so it will come at a later date. I would have had it done but I have a terrible pain in my back and suspect a kidney infection (darn you, kidneys! I thought we were friends!). I am going to spend the day keeping the couch and my books company.

*Side Note: I don't usually ready fiction, but my mom got a box of Dean Koontz books at an auction and, knowing what a huge reader I am, passed them on to me. Out of a dry spell when I had nothing to read -- which can render me ready for a straight jacket -- I picked up one of the books. I have to admit that I am hooked on Dean Koontz right now. I have read 2 of the books and am working on my 3rd and he has not let me down yet. Sugarbowl read one of the books I haven't read yet and really liked it, so that one is next for me after I finish my current one. I loved me some Stephen King growing up, but his newest books seem to have disappointing endings, so I left him and turned my back on "scary" books. Dean Koontz has brought me back into the fold and I have not found a disappointing ending yet. I would recommend him to anyone who wants a great book that grabs you and forces you into that world. The only downside I have found is that sometimes I don't want to leave that world, and that is the highest compliment I can give a book.

I Hate Puberty

The gods help me, Princess has been hit with the puberty/pre-teen stick hard! She may not live to see her next birthday and I'm not too sure how sad I am about that. I told her I am going to kill her and bury her in the manure pile in the backyard, then her dog will eat that manure pile and expose her body thereby insuring me a life sentence in prison, where I will enjoy the peace and quiet and freedom from a snarky little booger like her. I'm not sure I can take her actual teenage years if this is a taste of what's to come. When I did foster care, they liked to give me teenagers because I "did so well with them." Its really not that hard. Say what you mean and mean what you say. Don't try to be their buddy and don't try to force confidences with them. It also helped that I am not interested in their "secrets" because I know their secrets ain't that great; mine are better, and mine ain't that great either. Regardless of my lack of interest, they spilled their guts anyway. And I was right: their secrets ain't that great. Princess is already starting that know-it-all attitude. No matter how many times I tell her that I have already been through the 5th grade -- and yes, I passed it -- she still tries to stump me with nuggets of wisdom that she learned in school and has the audacity to be surprised that I know them. She is shocked that I don't spend my days in a corner, not knowing what to do with myself when she is not around to tell me how things should be done. I am hopelessly uncool and I have no idea how to function in this world without her to hold my hand and lead me through it. Never mind that I have made it 34 years without being committed to an institution for the mentally handicapped, and, believe it or not, they are not chasing me around with a big dog net to catch me and put me away before I can do any more harm to myself. Although I think she is hatching a plan to call them and tell them where I will be to make their jobs easier.

It's okay for everyone to barge in on me in the bathroom and check out my goodies, but GOD FORBID if I need something out of the bathroom while she is in there! She wraps herself in the shower curtain like I'm some Chester The Molester trying to rake my eyes over her body. I have been through puberty, too. Why do you think I can actually fill out a bra? It ain't all Kleenexes in there. I am 100% uninterested in how puberty works. I already know. I don't need to check her out because I remember it all. Jabber is even worse. He acts like his beans and weenies are the most sacred of all things and we are all dying to check out what we have never seen before. I changed his diapers and, something I'm not going to say to him, I was married for a few years and have seen my share of twigs and berries, so I don't need to check his out. Alas, my words are all in vain.

This morning we got into an argument about what time I get up each morning. She tried to tell me that I never get out of bed before 4:30am and it has always been that way. Beings as I'm the only one up each time I get up in the morning, and I have always had a strict rule that I DO NOT get out of bed before 4am, I felt pretty confident that I do not get out of bed before 4am, not 4:30am. She only gets up at 6am each morning because I get her up, and if she lollagags too long in bed I pull out the noise makers from New Year's and get her up that way. But what is my knowledge of my waking up times compared to an 11 year old's knowledge? Nothing.

Thank goodness I have her to tell me what I'm doing wrong and how to do it right, otherwise I would be drooling in a corner waiting for her to come home from school and remind me to breathe. Whew! Another bullet narrowly missed!