Okay all of you that read this blog, please sign up for twitter, and DM me @beowulf1877. Simply goto Twitter.com. It is free and I promise you get hooked! Or if you need toss me an email at beowulf1877@mchsi.com and I will send an invite.
For those of you looking for an update on what is going on here at the Mayo clinic. The reason we came down is we have been doubting the original Polymiositis diagnosis for quit some time now. Everything we have read on the disease, the homework we have done, and the comments of Dr Pissdrunk (Pestrunk) have just made us question what really is going on with Mary. So we came down here to the Mayo seeking information, verification, and/or a new diagnosis second opinion. Thus far, it seems we were correct in thinking that Mary has been misdiagnosed although the doctors haven’t exactly said it in those words yet. However, they have been using phrases like “A lot of red flags against it…” , ” This doesn’t look like any Poly I have ever seen…”, “Poly is inflamatory, and you don’t appear to be inflamatory…”, and “This does not appear to be a myopathy but more of a dystrophy”. Which all this to me says “We do not think this is Polymiositis, we are unsure of what it is, but we can pretty much tell you its not Poly.”
Hopefully after the comparative muscle biopsy on monday we will be able to tell more of whats going on. They want a new biopsy as well as a to look at the the original biopsy from Missou when Mary was 13. How does all this make me feel? Well I am happy that we might actually find out what this is and the possibility of new treatments that might work is very exciting. The scary part is how damaged has Mary’s muscles been over the last 14 years from this apparent misdiagnosis? Which allows the question, if Dr Pissdrunk had diagnosed correctly what was going on instead of just guessing(I say guessing, because of what has happened here this week, comments made here show that with all the evidence in front of him he ignored it) could Mary have had some semblance of a regular life?
Hopefully when finding what this is, we will have the answers, and maybe a way to get Mary back to almost normal. We can only hope. But the prospect seems to be there. They have pulled Mary off of her treatments, and kicked back her medications. Citing they are doing nothing and could possibly be doing more harm than good at this point. So in a nutshell, that is where we are. Still unsure, but unsure with hope. It will be a few weeks before we know the outcome of the biopsy’s, but like I said, hopefully we will have something.
That is where we are at. The biopsy will be done monday, then hopefully we can be on our way back and make it back home by Christmas evening.
So we are still here in Arizona; I do have to say it is very beautiful here, and I would seriously consider moving here for the winters. I might even consider actually moving here full time as long as first availability I would be able to buy a house in Canada to counter the extremely HOT summers here. I think that is a fair trade…
The scenery here is truly breath taking, and I could totally imagine buying a house somewhere in the mountains. The thought of watching these sunsets every night off of my back deck completely agrees with me. The only thing I cant get out of my mind, however, is since there is no grass here, where would the dogs go potty? I think they would be confused as to where to go, and the image of one of them lifting a leg on a cactus here makes my ass pucker for them.
So anyways, early monday morning we will back at the mayo for the Biopsy, then hopefully we can get on our way back home. Not looking forward to the 22 hour plus drive home. Honestly I cant wait to get back home. So much do to, get me office done, finish Christmas shopping, Christmas, and get ready for the next semester of school.
Merry Christmas to all, and hopefully the Christmas cards will arrive shortly before the end of the year. Trust me you will like them, they are awesome this year.
For those of you that don’t make it over to Mary’s blog to much, here are a couple of links to a couple of paintings she put up on Ebay. So if you like them PLEASE PLEASE bid on them and get one! Christmas is coming and I know you have somebody in mind that needs a little more art on their Wall!
Here a little more creative writing for you all. Please any feedback is greatly appreciated, even if you HATE it. Thank you. As with any story, I bear no witness to such events or similarity there of. 8>)
Heather
She was my pride and joy, Heather was her name and boy was she fast. Completely Black 1991 Isuzu Impulse, with tinted windows, All-Wheel-Drive, Turbo, 17” Lo-Pros, Racing Rims that weighed less than seventeen pounds a piece, Suspension that was designed by Lotus then enhanced by yours truly, Recaro Seating, Air Intake and every other possible engine modification I could possibly make. She was a true Wolf, 280 Horsepower of street burning madness. One of the few cars in the country at the time that could honestly do a four-wheel burnout, she was mine, and we were one.
On one of my trips back to Atlanta from Jefferson City, where I lived at the time, I was passing through Nashville. I had just stopped to fill Heather up with premium, checked the fluids, and tire pressures for the next few hours of driving. We were taking it easy tonight, a nice leisurely drive during the evening hours. It’s when I preferred to do my traveling. Heather ran better, got better mileage, and ran cooler, all in all its better to drive at night, its easier on your car. About thirty miles outside of Nashville a Black Trans Am blew by me. At first I paid no attention, another American Muscle that could run really fast in a straight line, but had no chance of staying on the road in the twisties. Another 30 miles down, the same car blew past me again skirting between me and another car I was passing. This time it was a dare, and Heather felt it too, as he missed my front bumper by inches, I felt Heather lurch forward. She was begging to take this guy on, the mountains were coming, and I knew I could take him there. I dropped the clutch, shifted from fifth to third, blipped the throttle to bring the RPM’s up before releasing the clutch again and hit the gas. Within a few minutes we were caught up to the T/A, and without even slowing I dived onto the shoulder and passed him as he passed another car on his right, his dare was matched by my threat, and the run was on.
For forty-five minutes we battled on Interstate 24, through the mountains, on the straights, passing with a careless recklessness that would make the devil shutter in fear. My adrenaline pumped through my veins, and sweat ran down my cheek as Rob Zombie “Dragula” cursed through the stereo. Heather never missed a beat; every downshift was met with the hiss of the blow off valve, up shifts brought the roar of the exhaust. Finally in one of the last stretches of extreme down hill curves I pulled the maneuver of all maneuvers. As we approached a pair of Semi-trucks side by side, there was only one lane left, and my opponent was occupying that lane. I was about to lose, and both of us knew it. Moving close to a 115 MPH I had to slow down or risk running into the back of the semi. For only reasons I can guess, the semi on the right started to float onto the right shoulder, leaving just enough room if I was fast enough, to buzz right in between the two haulers. With out thinking I took my opportunity and slid my foot to the floor to downshift back into fourth and hit the gas. Heather screamed forward and the sides of the trucks became a blur, as I approached the end of my tunnel the truck on the right began his move back into his lane. I felt my ass pucker as I popped out in front of both trucks and slid to the outermost left lane in front of the T/A. I had enough it was time to end this fun I looked down ten miles outside of Chattanooga and realized I needed fuel. I think my nemesis realized this also and backed off as I lost his headlamps in the distance behind me. I pulled onto the next off ramp and stopped to feed the monster that was Heather. After checking her fluids, temps, and pressures, I walked inside to pay the bill and grab some refreshments for myself. As I walked back outside my opponent was parked behind me fueling his ride and walking around Heather scratching his head.
“Nice Run! That was the most fun I have had in a while!” I shouted out as I strolled back to my car. Thinking to myself “I almost died tonight”
“Your one crazy SOB! I have not driven that hard in a LOONG time, that was some beautiful driving! What sort of car is this, I have never seen it before?”
“Thank you, I didn’t think I was going to make it between the semi’s” I said, trying to keep a calm voice. I then answered his question and the conversation moved to the events of the evening.
As our conversation continued, two police cars pulled up and stopped at the Gas pumps across from us. One officer got out and explained he had gotten complaints of two Black sports cars, running in excess of a 120 MPH through the mountains and asked if we had seen them. Both replied “no” and got in our cars and left.
A few weeks later, I was on a job interview with Cotton States Insurance, as I sat in the receptionists office waiting for my prospective new employer to walk through the door to begin the interview process, I looked up and saw my nemesis from a few weeks earlier. He was to become my new boss; I guess the world really is small. The entire interview consisted of cars, driving, and driver stories, never once talking about the Job or the Job requirements.
Saturday we leave for the Mayo in Pheonix. Hopefully the Doctors there will finally be able to have a stable diagnosis of Mary’s condition, and provide a solid treatment plan. At the very least give us a new direction to go. It should be fairly exciting on other fronts as neither one of us have ever been in Arizona before, so I hope we do get a chance to drive around and see some of the sites. One thing I know I would like to stop and see is the Meteor Crator that is on the way there. Hopefully we will get the oportunity to stop and see, probably pretty boring for Mary, however, for me it would be extremely interesting.
Other things, well…My mouth is still killing me, I have not had hardly any food in over a week now. Protein shakes, and lots of Milk. Let me tell you, Milk in massive amounts does NOT do a Body good. I have not pooped in three days!! Today I was in SO much pain I went back in to figure out what was going on, and found out that I have “Dry Socket”. I guess that is where the socket that is left actually dry’s up and starts to scab over. Normally not a bad thing if it was anywhere but your mouth. But since its in your mouth, it is tremendously painfull! I don’t wish this on anybody. I am SOOO hungry just for a piece of meat right now. And I am actually afraid to brush my teeth now! This sucks so bad! No pun intended…
Other notes, we got the Christmas card done! Thank you Kody! Wait ’till you guys start recieving them in the mail. This year’s card is great, it turned out awesome.
My office is turning out very nicely. I think if I actually got about two or three days solid to work on it, it will be done. I just gotta get those days. Very exciting to see it come together, also very satisfying knowing that I have done most of the work myself. I have had a lot of help though too, via my dad, Tony, and Jeremy, so many thanks to all of you. I am anxious to get done with this room so I can move onto the next room, which will be the bathroom. Loads of fun for me, and it gives me something to do when I am bored and looking for something other than watching TV to do. The only real thing stopping me from moving a lot faster is money. But its good, because I get to take my time on everything and get it just right. So it works out in the long run.
Anyways, I gotta get showered for my english exam.
Sorry I hadn’t written much this week. Its been one of THOSE weeks. I had oral surgery wednesday and I just have not been able to do much. Been pretty doped up for the last few days. When you dont go to the dentist for almost 13 years things tend to pile up until it just becomes necessary to do it. That finally happened, it was time to have a couple of wisdome teeth pulled, with about six fillins, and a cleaning. About four hours of dentistry all under sedation. I have to tell you, if you are like me and HATE the dentist, the Concious Sediation is the way to go. I really didn’t feel a thing and cant remember a thing about the whole ordeal. Just dealing with the pain afterwards. They had to cut one tooth all the way down to the Jawbone so that side is fairly sore. The other side is okay. Its just weird not having any teeth there.
So anyways, that was my week how was yours?
“Mid pleasures and palaces though we may roam, be it ever so humble, there’s no place like home.” John Howard Payne US actor & dramatist (1791 - 1852)
Midmorning the water is solid, not a break in its glass perfection. The reflection of the sun hit’s the water through a break in green foliage from paper white Birch that line the shore. First inspection of an old friend reveals nothing out of the ordinary or new, all is just as left. The wood stacked at the back of the Boat House to the left, the hoist that lifts the boat to shore to the far right, and White Giant Birch landscaping the yard, shoed and protected by green moss, even the ancient barren Oak carved into stairs running downhill.
A few steps onto the lush greenery feels comfortable and welcoming, a slight cushion to every step reminds the mind that no pain shall come from here, only comfort and joy. A black spotted, four-legged friend bounds from the car doors, rolls downhill, darts across the dock and takes a plunge.
The sweet musk of moss covering the rocks, and undergrowth of trees fills the air. Closer to the lake a slight rotten fish odor from a dead fish washed ashore from old age. The water is almost odorless, and clear. Slight hint of mold passes under your nose, most likely coming from the water logged wooden boards under the dock. Just as a complete sense of peace washes over, the sting of canine feces overwhelms everything else; the companion on this trip has just relieved himself after the long excursion to arrive at this destination.
A piddling dampness penetrates through a layer of nylon as a splash sounds with feet dangling in the water. Sitting on the dock after a few minutes the once frightened minnows come back to inspect the intruder. Recognition of an old friend brings a feast of microscopic dead bits of skin and microorganisms. Soon more gather for the feast and the tickling becomes unbearable, with a laugh of pleasure and a slight splash of water the chambermaids of the water scatter only to come back and find their meal missing.
Day moving into early evening the sun begins to drop and fade to orange. A long ray of orange light spans the entire length of the lake. A gentle roll of the lake relaxes, as the yodel of a male common Loon wards off competition. The females wail for attention sounding much like a long drawn out wolf howl, soon after the laughter of both begin in repetition to warn others to stay away.
In complete darkness only the dancing of fire awakens the evening. With Grandfather tending the flame, and Grandmother preparing food for the evening, a glance of warmth and comfort protects over the young as the elders of the family smile with a welcoming peace in their eyes. Dinner is simple yet entirely satisfying, hot dogs covered in chili, with cauliflower, chips, and cookies. A bite into such a simple yet delectable food brings tastes of smoke and charred bits of hotdog with a mouth warming spice of southern America. After a few bites, the tongue signals for a break, a piece of cauliflower drowned in ranch dressing brings the much needed cool down. A few sips of Pop tickle the palette before finishing the main course, followed by the sweet chocolaty goodness of soft brand chocolate chip cookies.
The black spotted friend returns to wish fair dreams and cuddle for warmth as fabric softener relaxes the spirit. A soft hug and kiss goodnight touches the soul with comfort and warmth, as eyes grow heavy with exhaustion. Soon the morning will come with the dampness of dew, and the call of the morning dove. All is right and good; forever our home is forever in our spirit.
This is only picture I have left of my families lake home in Minnesota. This was taken the last time Mary and I were there, before it got sold off. I wish I could have saved the place. But oh well, hopefully someday I will be able to buy it back, if not something that means just as much to me as this place did.
As your looking at the picture to your left would have been the “Boat” house, to your right would have been the dock, and right behind you would have been the house. All around you would have been surrounded by HUGE White Birch trees. Oh it was so Beautiful…
Look at what I did today!! I got in a 1st gen Mac Air with a busted up screen. So I ordered a brand new screen from powerbookmedic.com and put it in. While I was in there I decided to do a little modding and changed the color of the Apple Logo. I am willing to bet that, I may actually have one of the only Mac Air’s with this Mod since typically changing out the screen is not done on the airs. Ussually Apple just replaces the entire top half of the notebook. The reason they do this is that its almost impossible to get into the top half with out destroying the trim bezel. They use some un-godly commercial grade double side sticky tape to keep it togather. But with a little patience and a hair dryer set to high it was no match for me. Some severely hot fingers, a couple of new burns on the good ole tips, and I had that display out of there in no time. Well…actually about 30 minutes, but with a little patience it CAN be done. Nomatter what Apple tells you.
So while I was waiting on the new display to arrive I decided to take a look and see if I can change the glow logo to a nice blue color. This is how it went. First after getting the Air torn down completely I removed the piece of white paper stuck to the inside of the panel. I found that the logo is actually painted white after scraping a little with my trusty razor knife. So I went to the hardware store and purchased some 400, and 600 grit sand paper. Using some mineral spirits to help eat the paint I sanded away with the 400. I would recommend to anybody that does this to start with 600 or 800 grit, it may take longer but the result will be much nicer. Once the paint was removed I went back over the logo with 1500 grit and some water to get rid of the deep scratches and to polish it up a bit to bring back the transperancy. This actually took a LOOONG time. Had I used 800 grit in the first place I think it would have been much easier, and the result would have looked a bit better. Once I had the logo blocked, I used some rubbing compound by 3m to polish it back up and clean up the logo. After that I simply took some 3mil Vinyl and adhered it to the inside of the case. After rubbing all the bubbles out, I started reassembly. And hour and half later you see the result. I am very happy with it.
Okay well this post only ate up about a 1/2 an hour of my imprisonment in the computer lab. So off to find something else to do.