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The 48 hr. EEG are scheduled to be hooked up Friday at 1:30 PM. I will take pictures of the setup and get them up on the website if I am not too trashed that day. I had pictures from 2 years ago but they were lost in the disaster with my old, old computer, that lead to me getting my old computer, which blew up, leading to this new computer.
Why oh why must computers blow up for me?
That aside stay tuned for news.
Earth Hour Logo
Earth Hour / Earth Day is over everyone. And I had a great time running the telethon. It didn’t pull as many viewers as I’d have liked but it still did a nice pull of viewers. A 5.75 hour long telethon brought in quite a bit of interest. Out of it I got $20 dollars into the Alin S Fund which as you all know helps pay medical expenses. It was a fun way of raising a little bit of money to help things both at the World Wildlife Fund and my medical expenses. The total earnings were $40 dollars and as promised a direct 2/1 split was done. The entire 5.75 hour video is viewable here
By popular demand donations have been extended by 1 week until April 6th. That means all donations via the box below will continue to be split with World Wildlife Fund just like during the event! After April 6th this offer will be gone and any donations will solely benefit the Alin S Fund unless otherwise noted for another event!
And speak of the devil, it’s already 7 AM and I still have not gotten a minute of sleep. Excuse me while I go let the seizures put me to sleep.
Earth Hour Logo
This is final notice that the Earth Hour event to occur tonight is CONFIRMED. The event under no circumstances may be canceled except in the case of a life threatening medical emergency.
Please report to http://www.ustream.tv/channel/earth-hour-live-2009 at 8:00 PM tomorrow!
See this post below for more info
Or you can donate right here.
This post’s donation box depreciated. Replaced by new post.
Medical Logo
Yesterday went to my doctors office to get orders for a whole boatload of tests, and a few surgical procedures that we need to help diagnose my disease and hopefully point us in the right direction of a prognosis and possible treatment paths.
Tests ordered are.
We are also waiting on a few other things to be ordered after the completion of these, the next order batch is.
The above are all unconfirmed tests aside from the new wheelchair. They may or may not happen but are likely to be ordered.
All of the tests in the first “test block” are confirmed and will happen soon. Stay tuned.
Medical Code Red on front page
This is not your usual short news update. This is your usual I’M REALLY PISSED OFF UPDATE, mixed with regular news.
First things first, as of this Monday we had attained medical code red status which is used exclusively when there are emergency appointments being made and tended to. I will be updating the front page as we click through each appointment.
Yesterday we went to my neurologist Dr. Ikramudden who agreed with me that I need a 48 hour EEG done ASAP along with a 1 hour sleep deprived EEG done ASAP, sleep deprived EEG? That will be too easy, I can pull an all nighter easyyy. In fact it might happen tonight because of a little something that is really pissing me off that I will describe later in this post.
Today we go to my general doctor to get the orders for the EEGs and a barrage of other tests and Hopefully get the papers signed for a new wheelchair. Now that hopefully isn’t there because the doctor might not sign them, it’s because I might not have them ready by then because of that little thing thats really pissing me off as I mentioned earlier. I was working on a huge Rehab Institute of Chicago justification of medical necessity form, 11 pages long, not even including the individual component reports which will add another 10-20 pages to the cumulative report size and then add a page for the doctors letter stating I need a whole damn new chair. This form that I have been working on for the last four days on my laptop, staying up till 5:00 AM or so to really crank on, was finished today around 1:00 AM, I went to save the final copy and was met with a barrage of error messages, every way I tried to save it it wouldn’t work, it wouldn’t even print. Then I closed the print window and nearly screamed at the top of my lungs “WHAT THE !@$(! YOU PIECE OF @*%^” I was literally ready to chuck the computer through the window. At least 30 hours of work gone down the tubes, and to make it even worse I have a 2:00 PM deadline to meet, TODAY. Or these forms might not get signed for another few weeks. Getting them signed is easy, so the sooner the better. Once signed its off to the warzone to battle the three headed monster known as Aetna, and the time in the warzone can last a few days to many months. So the sooner I get the forms done the sooner we can go to war.
In lighter news the site has been updated changing the E-Mailing list button to the Subscribe to news feed button for simplicity of new users.
Gimme Da Cash!
Sunday we went to Cabela’s which is a large sporting goods store. We got me some underarmor shirts which are awesome for keeping warm or cool (depending on the type you buy) and also are great for keeping your skin dry to avoid pressure ulcers. They had a huge exhibit in the middle of the store which I took a large amount of pictures in along with the aquarium. After that we headed upstairs to the gun library and had a little gunny funniness.
Click the picture above to go to the gallery!
Yacktman Pavilion At Advocate Lutheran General Childrens Hospital
Sorry I have not gotten this news up quick enough. Since around thursday I have been pretty miserable with how many seizures I have been having. As you know I have intractible Epilepsy and have seizures randomly out of the blue for various reasons, usually never stemming from photic (light) stimulation. Anyways since Thursday I have been having a nasty amount of short absence seizures in which I completely black out and loose contact with the outside world and then reawaken. Thankfully they only last a few seconds so I am able to rebuild my memory that got fragmented. On Friday I had my first of two neurocognitive test series and I will be going in for another one this coming Friday. Hopefully this coming Friday I won’t have 10 or more seizures during the test. I am sure last week’s test results have been screwed up by all the seizures. Speaking of which as of today I am still having them every so often. This week we are going to go to my doctor on Wednesday to get a urgent order for a 3 day EEG along with some other tests to find out what is going on and also repeat my yearly tests. More updates to follow, this explains why medical is code orange.
Earth Hour Logo
As you all know Earth Hour is this month on the 28th at 8:30 Central Time until 9:30 PM central time. But theres something special amiss here. I have sent the following letter into the World Wildlife Fund in hopes they will publicize my website, blog, and video feed that will be coming back EXCLUSIVELY for earth hour.
The event will start at 8:00 PM, exactly 30 minutes before the actual start time. At this time, ALL non vital equipment in my room of the house (at the very least) will be powered off or switched to its battery if it is vital (laptop computer / cellular data system / respiratory maintenance equipment) All lights within the house will (hopefully) be shut off except for two emergency night lights both of which are low wattage lights. Via the cellular uplink I will be taking real time live earth hour calls via skype phone and running a live telethon on USTREAM available at http://www.ustream.tv/channel/earth-hour-live-2009 The show will actively collect money in a 50% / 50% split, 50% for benefit of Alin S Fund (not a 501 (c) 3 organization, reason: I can’t afford the registration costs along with a lawyer to handle it.) and 50% will be donated to the World Wildlife Fund (Operator of Earth Hour 2009)
All public gathering should be done on the USTREAM URL. Anyone is welcome provided they do not abuse the digital telethon facility.
All questions comments or concerns should be directed to.
Contact Name: Alin S
Contact’s Organization: Alin S Fund
Contact’s Position: Owner / Operator
I included my cell phone number, fax, and e-mail in my original letter so they can send me any forms or anything I need to fill out.
Your big question at this point is, Why suck yourself into yet another responsibility. Well the beauty of this is its simple, all I have to do at this point is advertise it a bit, and lets all get viral with this! I want to see at least 50 people in the UStream channel at any given time! Whether World Wildlife Federation supports and advertises it or not the 50% / 50% split of all donations will be used and the event will move on!
Another question may be, Why did you not do this last year. The answer is that around this time last year I was fresh out of my G-Tube surgery! I have up and coming surgery for Selective Dorsal Rhizotomies to hopefully repair my contractures in my legs but I will make sure the surgery is scheduled for after Earth Hour day.
Depending on the experience on this Earth Hour Telethon I may do telethons for other special events around the year.
The EarthHour Chicago team has not contacted me but they are following me on twitter, so the event is NOT officially sanctioned by them, yet. But I consider that a Pseudo-Official sanction.
Finalization of the event has occurred. The event will NOT be canceled unless there is an emergency.
I will keep all of you up to date on this event and its progress.
The new washer lid switch
A close up of me in the Menard's screws aisle
Today we had a few things to do. I didn’t tell you all but Sunday we dropped mom off at the airport to go down to Florida to see her mother (my grandmother) and get some stuff sorted out down there with medical and legal crap and blah blah blah. But onto the juicy news for today. Dad has been off of work since 6:00 PM last friday and since then we have had a broken washing machine, it will fill, spin, do everything, but it won’t drain. Sunday dad was to the point of beating the crap out of it, and we could hear clashing bangs coming from downstairs, but apparently those were just him taking it apart, or so he says, hehe. Anyways after nearly a day and a half of time burned he figured out that the lid switch was probably causing the problem, NOT the timer, which he bought a new one for $99 dollars on Friday, and what really blows here is they are NON RETURNABLE! We had to go to the same schmoe he brought the timer from on Friday today and buy a lid switch and cable and voila! The machine works, the only thing was he had to spend another few hours mucking about with the timer getting it to time correctly so it lands in the off position on the knob dial. Dad is also repainting the bathroom and making a important addition that is going to be helpful for mom and her bad back / leg. It is a handicap grab rail at the side of the toilet. But this is not a simple screw it into the stud type of thing, our house has no studs in that wall of the bathroom! First we were thinking of “Molly’s” which are bolts that “Open up” and make themselves much harder to pull out (pulling outwards) or shear (downward force) However our walls don’t have enough room for a Molly to fully function, so we decided to use some “Tapcon’s” They are a special type of screw designed for use in brick and concrete that lock tightly and will not go anywhere once put in place, at least no where easily. Between the wall and bricks in our house is about 3/4ths of an inch of dead air. So dad is going to tomorrow try this method out and hopefully it will be a really sturdy grab bar that mom can use. The process will be as follows, drill proper diameter hole for the Tapcon’s to go in, then insert the Tapcon’s and shoot them into the bricks as deep as allowable by the grab bar. There will be three Tapcon’s in each bracket, two brackets make the fore and aft portion of the grab bar. We estimated the shear force (Pulling downward) rating for the entire assembly to be 300 pounds, which will be more than enough. I will give more news on this tomorrow and hopefully have him snap some pictures of the “New” bathroom. It sadly will not be accessible to my wheelchair still, making it accessible would not be possible as widening the doorway is not possible since it’s a load bearing fixture, put simply if we widen that doorway the house may as well cave in on top of us. Theoretically we could do it but it would cost a small fortune, so I guess I will have to do with daily spongebaths, a weekly real bath in the tub, and commode and urinal for their respective businesses.
All this work has to be done by Wednesday at 1:45 since moms plane should arrive at 2:10 on Wednesday!
Go Back To Main Site Links
This came without much excitement. Both the photos and forums page now have buttons to return to the main site, no more bopping the back button 200 times to get back after looking through photos or the forum!
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