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7/24/2001 Hamilton, NJ Welcome to my Diary page. This is an experiment. More to come. Today I brought another site live. Lots of stress. My neck is in bad shape, I'm wearing a brace, and I'm in a ton of pain. I don't even know what I'm doing here. 8/1/2001 Home Well, I'm home. Yesterday I had an MRI, courtesy of Dr. Prager at RWJ Hamilton hospital. Dr. Silverstein read it for me. Essentially, I have a nasty huge disk in my neck which has ruptured. My spinal cord is compressed. My guitar playing is in jeopardy, as is typing or anything else involving my hands or feet. The worst part is that I can't get into a doctor for the next month. What is wrong with the medical business in this part of the country? In other news, I'm gonna miss Robert's diaries. 8/2/2001 Home Well, I went to my favorite urgent care doc today, and brought my free MRI (he was highly amused!) He sent me on to a local neurosurgeon, who, while fascinated with my green toenail polish, agrees that I need surgery. Unfortunately, this doctor is not on my insurance, so, if I decide to let this guy cut me, I will end up paying 35% of probably $15-20,000. I have found another doctor in the area, I will call him tomorrow. Some online research reveals that there are artificial disks in clinical trials. Unfortunately, I do not seem eligible for this. I fear that after this surgery I will not have the coordination to play guitar. It was hard enough from the damage of the last disk herniation... so much coordination lost. CG talks about having a relationship with my hands but when the telephone line is crimped, it is very hard to get clear messages to those hands. The guy I saw today wrote me a prescription for some steroids for the inflammation and some more percocet. I have a feeling I will be fighting the addiction battle once again before this is all over. I can't function without it, the only thing I can do is lay in bed and I can't do that. Feelings of worry about a new friend came to me today, and after emailing my friend, find that he's really hurting. Love, understanding, and warmth go his way. It is funny how just a tiny tremor in the pattern of things can mean volumes. Lots of posters all tubed up and ready to mail to the newly formed CGT Street Team. It continues to amaze me - the generousity of their fan base. 8/3/2001 Home Day two of Neurosurgeon Roulette. Today's entry refers me back to Monday's candidate, a Dr. Allen. He says that the surgery is too complicated for his practice to do and Dr. Allen and his colleague will be able to better handle it. Apparently I will be obtaining some new hardware for my neck. None of these doctors are on my insurance. This means that I will be paying 35% of everything, up to my $2000 out of pocket maximum. It's a good thing that September's NST didn't occur, I guess, so I will have that money. All this is pending on my insurance company deciding whether or not my doctors know what they are talking about and will pre-certify this surgery. Last time I had this surgery this process took a month, which I attribute to the residual weakness I had in my right arm after that little episode. If that'd happend now, I could sue them for delaying medical treatment. The biggest reason I am not a doctor right now is because the medical business is just too much determined by the insurance industry. Today's visit was actually with a rehabilitation physician, who says that I "should" be able to play the guitar after the surgery, if I don't use a strap. I am not sure how I am going to do this, the GC technique is pretty strap-dependent. I am looking at a strap that crosses in the back and goes over both shoulders. I also "should" get the strength and coordination back in my right hand, although some damage may be permanent, since there is narrowing of the spinal canal where the previous surgery was. As I wait for surgery, I get weaker on the right side, which is always very disturbing. Sent out 15 tubes of CGT posters. My sister in law is an Angel. She has been dragging me around town, to various doctors, and helping me with my errands. She is exhausted but yet she is staying with me because I can't drive (of course, wearing a hardshell neck brace didn't stop me from driving home from New Jersey on Wednesday) Hopefully, I will be ready for January in Italy. I may have to do some intensive work with someone after this is all over, and of course, my local Alexander instructor will be getting a call... Turned over my NJ client to support. I am missing a very important meeting in KC next week, and I am fearful that I will fall even more behind at work because of this whole mess. Once again, my health puts a stop to any forward progress I make. 8/4/2001 Home Lazy day, slept late. Went to Mars music with Mark, he bought some headphones. We both seem to be having an interest lately in sound mixing and had to restrain ourselves from buying a big mixing board. I looked at guitars, but didn't play, they didn't have any straps. Bert suggests I just get a foot rest and play without a strap. Bill had also suggested that, sort of how TG plays 12-string so I will try that. We bought some fish at PetSmart, Mark got me two see through fish, one iridescent purple and one iridescent green. Very sparkly. I bought Snuggie a stuffed squirrel. She grabbed it out of my hands before I could even take the tags off. Pam did lots of laundry. Tomorrow, that's what I'll be doing. Still eating percocet like candy, but it does help the pain. Worked on a durable power of attorney, if anything happens to me, I want Mark to be making the decisions. I miss listening to BPM&M in the car. Pat's drum style is strangely addictive. For a long time after Nashville, Heavy ConstruKCtion's drum parts were lodged in my brain. Strangely enough, what I can't get out of my head right now is a song by someone I'm worried about. I need to file expenses, send out directions for the poster people, and do my laundry. What I'll probably do instead is just vegetate. Creeping weakness in my right arm, it feels like it weighs a ton. I know this will get worse, and I also know from experience that it will get better after the surgery. Still, a little scary. 8/5/2001 Home Happy Birthday, Joe Mom and Dad have reached new levels of paranoia and installed a firewall. I guess this will be the next way for greedy people to get money out of the elderly, by preying on their internet "hacker" fears. In my 15 or so years of internet experience, I have yet to be infected by a virus. I've gotten a few in email, but then I'm smart enough not to run files or open emails from unknown persons. Sat around all day and did NOTHING but watched tv. Didn't wear the brace all day, which was ok if I sat still. I think the medrol is helping, the pain is a little better, the weakness in the arm is there and my toes are numb, though, so I know that even though the pain is less (and the Percocet helps too), the problem is still there. More addresses coming for CGT volunteers. I wish I could do this as a full time job. It is very gratifying to me to be able to help these artists who have better things to do with their time than mail out posters and worry about who is going to do their merch for them. A little laundry tonight. I am missing a very important company meeting in KC. I have a persistent fear that this will cause me to lose my job. I do not know why. I am very good at what I do, and my customers are very satisfied with the job I do. Isn't that what's important, more important than mixing with the boss I've not yet met? Tomorrow I am meeting with neurosurgeon #4, the one who will be performing my surgery (possibly along with neurosurgeon #5). This is a very scary prospect for me, having surgery in a small town like Raleigh. I am from Houston, which I consider to be the Mecca of medicine. Everyone I trust medically, and my vast medical history is there. This will be a leap of faith for me. 8/6/2001 Home Dr. Allen's office says they will call me tomorrow to schedule surgery. I hate waiting. They said I will be the first case of the day due to my latex allergy. Interesting day today watching the code red virus attempts on medtek.org. Mostly from the U.S., the hits are coming in bursts, about 10 every hour. KMO shut his server down because of the excessive hit rate. Hostway, who houses the medtek.org servers, says that their stuff is protected. That doesn't help the repeated requests by the virus. Everyone seems uptight in the house today. Job stress, home stress, not sure. I feel bad because there is not much I can do to help, either physically or emotionally. Back when I was a kid, Mom used to draw pictures of a little worm named
Willie. Today she sent me a new Willie, the first she's drawn in probably
30 years. A pretty good rendering of the brace I have to wear. I told Mom and Dad today not to come out for my surgery, which I know is difficult for them but is a necessary part of my healing. I know they understand but it's hard all around. Here is another Willie that Mom sent me... 8/7/2001 Home Worked a bit on merch details for the upcoming CGT tour. I think we have all of the holes filled in, except for maybe one slot in Austin. Shouldn't be too hard to fill. No word on the surgery. I hate waiting. Almost out of percocet, so that's gotta get taken care of soon. Slept without the brace last night and now I'm paying for it. 19:00 Most of all, I hate it when my health interferes with my life, and that's what it's doing. I am tempted to try to play guitar a bit. One of my favorite people, Scott Horowitz, is set to command his first mission on Thursday. He's going to ISS to bring up a new crew, and bring down the people that are up there. Ad Astra, Scott. I wish I could be there for him. I had promised him I'd work all his missions, but back then I didn't think I'd ever leave NASA. I miss Karen and Dan, and I miss the excitement. I don't miss the stupidity of NASA as a whole. A new one from Mom: 8/8/2001 Home Migraine today. One of those, screaming, puking, can't see, can't hear migraines. Woke up at 6 with it. Poor Pam came in from her morning walk, came up to kiss me good morning, and I ran out of the room to go puke again. Pam got her hair done, kind of red and blonde streaks, looks very cool. Makes me want to have mine done. It's already red-burgundy, about as odd as I can get. Can I get it a little odder? It cycles from purple to orange on about a 6 month cycle. KMO is in a very odd mood. Now he is talking about "stingray fellatio" and beating off shark attacks with your own leg. I love it when he gets like this, there is nobody who can make me laugh with such nonsense that all makes sense. My head still hurts. I'm lucky I only get these things every year or so. Some poor people get them all the time. 8/9/2001 Home Pain. Migraine echoes, back pain, arm pain. It's spread to my left arm now, a little weakness and pain. Spent 2 hours going to the doctor to pick up my pre-op packet and prescription for Percocet, which apparently can't be called in because too many people are grinding it up and snorting it. I can kind of understand, I mean, any one can call a prescription into a pharmacy, if they know the lingo. I used to call in stuff all the time when I worked at the doctor's office. 8/10/2001 Home Stress and angst, angst and stress. I hate conflict, backstabbing, oversensitivity. All of those in spades today, from everyone. Snotty remarks flying here and there, things taken the wrong way, or meant the wrong way. When I'm in a stresspool, I just want to run away. I'm stuck, though, unable to travel, unable to even drive myself away. I have to work, and I have to interact with people. It just seems everyone's on edge. Massive work frustration due to STUPID connectivity. I have to jump through hoops just to do simple troubleshooting. Locked up my work laptop innumerable times trying to connect to my client. Bad vibes make the situation worse. Being a person of some intelligence, I don't like it when others tell me how to think, what to like, or what to believe. Many people are attempting this with me lately, and I don't appreciate it. The president's "decision" causes much discussion in the house, and a sad heart for KMO, who is depending on this reasearch. The MDA certainly isn't going to help. Bright spot: sweet email from WS made me smile. Also from ST. Mom wants to buy me more jammies for my hospital stay. There is another Bernadini in this world, always a good thing to have! Many others are very welcome to Bite My Ass. 8/11/2001 Home Look out! There's a wildman orbiting your planet!
More major stress, yelling, arguing. Yuk. Took a nap to avoid conflict. Later, a trip to home depot to look at countertops. More confusion. Nasty thunderstorms, dinner at Fudd's. Fun with Paint Shop Pro as we think about possiblities with the kitchen. All the fun of being a homeowner with none of the fuss, sort of. Random daydreaming about somebody special, possibilities? Probably not. But he's nice to think about. Nice really to think about anyone, after what's happened. Which is a good sign, I guess. Dr. Sermas would be pleased. Tomorrow, work, work, and more work, must get all of the clients in good shape for my upcoming absence. The Trio too, got to make sure they're covered for their tour. The picture is Scott "Doc" Horowitz, currently on orbit. Maybe Stevie Ray will come through for me and send some Trio up. Probably not this flight. Is MOCHA on this flight? I don't even know. 8/12/2001 Home I think I'm sick or something. Nausea, sleepy, first hot, then cold. I'm going back to bed. Didn't get anything done. What a loser. 8/13/2001 Home Mom sent a new batch of Willie today, including a new one which, in Mom's own way, tells me that she is not happy with the family situation. I know that my parents voraciously read my diary, so all I'm going to say to this is message received and ignored (by me). If you have something to say, say it. Phone lines remain open... Speaking of which, a call I was looking forward to didn't come. Also an email from an old e-friend who is feeling ignored. Sad news, but she is right, I can't deal with the negativity right now. I wish I could be there for her but I'm just barely here for me. Avoiding answering another email from one of TATDML's jilted ex-lovers, who wants to be friends. I should answer that one. Tomorrow is pre-op time, and of course when you call the mechanic the car quits making noise and so has my neck. That is, until I hit my head in the pantry. Electric shocks. I used to hate people who insisted that I take blood this way or that and from here or there and now I have become one of those people. I know my left arm is no good for drawing blood unless you're really, really good. Hermann Hospital successfully ruined what's left of either arm, so I'm SOL anyway. Look out, WakeMed. Here comes your worst nightmare. Bill paying, work, and diary reading. Bad storms today. Snuggie got a haircut. Tacos for dinner, good stuff. ICQ messages chock full of yummy XML from KMO, the XML god. Like I understand what he is talking about. Still entertaining, if not a bit confusing. 8/14/2001 Home Pre-op today- very silly anesthesiologist. "You've had a couple of surgeries." (the number of majors is somewhere around 15, the number of times I've been knocked out is closer to 50) They really are proud of their drugs. Got the lab in trouble, they didn't have any non-latex stuff. I am really tired of healthcare workers who think that latex allergy is bullshit. I had two rad techs express that to me at the last hospital I visited. I set them straight. A little shopping, short but enjoyable emails from P and C and T and other initials... always good to hear from my friends. TATDML's ex-lover person wrote back, she is still sending him emails telling him what a loser he is. My advice: move on. SS announced basically to the entire company that I can't do my Crystal class, looking for someone to teach it. Development points out the painfully obvious, you can't teach Crystal in the 4 hours they allotted me. Duh. After many inquiries, I sent out an explanation to all of the Houston staff, they were quite concerned. Nice bunch of folks. 8/15/2001 Home Sadness reading the following article: http://www.cnn.com/2001/TECH/space/08/14/light.pollution/index.html
"There were 58 respondents," she said. "Forty wrote back that until
they did this they had never looked up at the stars before. The most
tragic thing was that they ... were 16 and 17 year old students.
Those who know me well know my standard nighttime posture of staring up at the sky. I've often said that it looks lonely to me when we don't have people on orbit... well, they're on orbit all the time now. I can't imagine teenagers not knowing the sky and the stars. Are we losing our sense of wonder? Today the fear set in. I usually don't get very nervous about this sort of thing, but this time, I feel like I'm just stepping into the unknown. What is the difference between surgery in Houston or Raleigh? WakeMed carries a great reputation, and Hermann nearly killed me due to negligence last time I was in there. I do not like fear and pretty much think that it's pointless. What is the point of getting worked up over things you have no control over? Still, my psyche screams out to cancel the surgery and just live with the pain. It hasn't been that bad lately. Unfortunately or fortunately, my medical mind knows what's best. Several people have suggested that I see a chiropracter for this. I am all for alternative medicine but I think the practice of chiropractic, as I've observed it, is dangerous. Very sweet email today from a friend who's been hurting. He's doing better, and I'm very relieved because I was quite worried. It is amazing how close you can feel to someone you've never really met. I feel like I know this person very well but I'm not even sure he knows what I look like. It is a very natural thing for me to form friendships electronically, and I often forget this is not the norm for many people. Lots of work stress, nudging me for time next week during my recovery, I'm not supposed to work for a month but that is really intended for people who go places to work. I don't have to get dressed or drive anywhere so we'll see how I feel. DD suggests that I contact my yet to be met manager about my future with the company. I constantly get the feeling that I am being pushed out. So maybe it is time to look at different aspects of our business and see where else I am welcome within Cerner. Flowers from the NASA bunch, my three beloved card buddies and Dan. A belated happy birthday and get well soon, combined. I miss playing spades at lunch and I miss crashing Kandi's preflight parties with Dan and Karen. There is no going back but sometimes I really wish I hadn't left. It's all ruined now, anyway. A big honor today- from the Pathways e-group as posted by SS: For those of you not at the SF show, Paul informed the Street Team that they had written a song in our honour, but they did not have a name for it. He then asked for suggestions. A fair number of people shouted out "Street Team!" or "Ode to the Stret Team!" but these I felt were a bit banal. Yeah, they get the message across but they're clunky and I feel we could come up with something more suitable. I don't even know what to begin to say to this. Wow. I'm glad we are helping and hope that we can help other artists in a similar manner. |