I was born on August 8th 1991. Two or more weeks premature. I spent the first three and a half years of my life in a Romanian orphanage, on the third year one of the caretakers attempted to kill me by throwing me down the stairs for complaining that she was stealing food. I suffered a Traumatic...
You all are probably about to scream, TRAITOR, ANDROID TRAITOR. SHUT UP! First of all I am a media and photography buff. Obviously the iPhone is better suited for photo and music as it is integrated into iTunes. Does this mean I am giving up on my Android, no I am going hybrid, my iPhone will be a Wi-Phone, WiFi only and work with my business telephone number which is nothing but a second Google Voice account. But as far as a primary day to day device it seems like Android / TeclaShield is the best way for me to go. It is also completely switch accessible and with my degrading arm performance I’m gonna need to use switches soon, or wire into a head array.
Oh heres the unboxing video.
Mel1′s Birthday Card
Thats me snuggled up with my harness Mel1 who I sleep with really often along with my other objects carrying a spirit. Well if you look at this blog post HERE you will see that a few of the special objects in my life hold spirits and talk to me and I the same in my own way mostly primarily by snuggling up with them etc. Like Mel1 and I our primary way of communication is by touch so I snuggle up with her and sleep with her very often. Not to mention that she resides on my wheelchair so shes touched a lot. Mel1 was born on feb 18 2008 so she is 5 years old now!
My wheelchair with all straps Mel1 Mel2 and Mel4
Theres really big news coming regarding my wheelchair soon, but I am not allowed to divulge that news yet. Keep your eyes on this blog as this thing will be the first place to get that news! So for now you can oogle my shiny wheelchair next to my bed. Yes see seating is all nice and shiny and silky.
Yesterday was International Margarita Day and so I celebrated by making myself a XL 28 oz margarita! Wow, you think my muscular control is crap, wait till you try me on alcohol! Skip to about 7min 15sec to see. 1 big Margarita and the bottle only said 7% alc by volume. GO FIGURE!
I’m still working on those videos from me and shawns day out bowling, I’ll probably have those done tomorrow or Monday. I have had a lot of other things going on.
(Picture of me flipping drive the bird removed, bit too vulgar for some.)
You know this hard drive crap has pissed me off to the point that it’s not even worth a damn video. They will be dropping off a new drive tomorrow. Your probably wondering “What now Alin, manage to crash more heads?” the answer is a no it’s a Toshiba with what sounds like Failing or Bad Bearings wanna hear what it sounds like, hit the link there and scroll down till you see Toshiba. The drive does it on and off, and runs very hot in comparison to any other hard drive I have used. Copying 20GB of files should not push the drive to 120 degrees and make it make that sound and force me to want to wrap it in an ice pack like the picture below. Man I have lovely luck with hard drives don’t I… NOT. Boy am I glad I have Amazon around who is replacing this one at no charge and no shipping fee because it’s such a ‘young’ drive to fail so quickly. 10 bucks to ship a drive back to Toshiba kind of sucks when the drive only cost 59. That’s where being an avid Amazon customer comes into play. The drive delivered Jan 2nd and exhibited this failure sign to my awareness and loud enough for me to notice it Feb 3rd. Normal return window is 30 days from the day the order is delivered, so I was one stinking day out of it when the drive decided to start screwing with me. They were quick to sweep that under the rug and issue a return label and issue an order for a new drive.
The above picture is a lasting message to the drive I am sending back… f*** you drive! At last I got my data off of you before you totally fail!
In a way I am lucky because the drive hasn’t FAILED yet and therefore I can move all my crap to one of my spares, kind of nice to get hard drives for christmas, cause then you got two spares laying around at any given time. Well one, because one drive is my bootable clone of my machine. Whaaaateeeever.
Me with the Chicago Auto Show 2013 sign
Here it is, Chicago Auto Show 2013! It started yesterday and I got in on all the cool goodies. I got to go see the new Toyota Tundra get unveiled and also got some cool goodies. I also saw the new Ram ProMaster truck which reminds me of the old Dodge Sprinter vans. Lot’s of cool little toys I got, USB flash drives about 32GB worth of them! FOR FREE! I took a lot of video. I did an interview with Honda about their electric car concept, their Accord CNG (Compressed Natural Gas). In addition to this I interviewed the ProMaster and the Kia Soul. The weather coming home was horrible, I was up at 5 AM to get to the show and slept for about an hour in the car on the way home, my powerchair is too comfortable. There are So many videos this year I decided to make a playlist to house them all, the amount of photos is also larger than any previous auto show.
Nice and tightly adjusted. My new Special CARES harness
Moving on you see me above strapped in with a CARES harness in my IRIS, well thats not really what the CARES harness is for but I can’t afford some airline seats let alone Mom and dad would throw a cow, they aren’t furniture in their opinion. To me airline seats are probably the ultimate in exotic home theater furniture that will last forever. If it can take abuse of commercial rowdy passengers it can take the abuse of a family. But still I wanted to kinda show you how the thing works so I used my IRIS which is probably about approximately the right thickness, and width of an ultra luxury first class seat, definitely not coach. But anyway I bring without further delay the crappy unedited CARES harness unboxing and test fitting. Oh and I wanted to try it out cause you know me, if it’s a harness or strap of some sort I GOTTA MESS WITH IT! Right below there’s a video of me with my CARES harness.
Figures that something with so many straps is going to be attracting to my autism and sensory issues, how soft silky and smooth it is was really surprising so as I usually do with things I like the feel of I wrapped it around my arm and part on my lips and wherever I could feel it. So surprised at how soft the material is, oh and SHINY!
Return ticket and validation codes
OK, Moving on. In the photo above is one of my best friends Shawn holding up a ‘boarding pass’ to board our van to go home, we went bowling and had lots of fun. I took lots of photos and we will be bowling quite often. I also took some photos which this blog post will be UPDATED to reflect, I will have those out sometime tomorrow.
Me & Darren from TribulationExpress and my Quickie IRIS Wheelchair
Wow, I’ve been sleeping like total crap and I haven’t been doing too great. So I wasn’t so ‘Quickie’ on getting this blog post or this news out that my Quickie has arrived! And shut up Rocky, it’s a damn wheelchair! It’s got nothing to do with sex, though this thing I am sure will attract plenty of girls with the awesome sparkly blue paint job it’s got. Anyway moving on. The wheelchair was trucked by Darren from TribulationExpress all the way from NJ to my house. Hit the picture above for untrucking photos. Compare and contrast. UPS Freight would have cost me $800 to get the chair here but Darren got it here for $200 in a shorter timeframe too with real time tracking via phone call or text message.
That all said I had lots of fun the subsequent two evenings, I was actually up all night working on the chair the evening it was delivered, I was just too excited and happy to sleep. My freedom to travel by AIR has been delivered. But this chair is only half of the components needed, the other half delivered yesterday, more on that in a bit.
The seating on the chair is not suitable for my needs due to the way it is fitted for a 17 year old girl. Surprisingly though the seating does fit me but does it provide proper support where it is needed like a proprly evaluated seating system. That will be a big fat NO. While the seating may be workable for a short term a long term seating solution is NEEDED and will cost about $3000 total including accessories like mounting hardware and positioning straps. That being said I am in a CRITICAL need for donations. I usually don’t make ‘open outcry’ for money but read below for some stuff as to what is going on with me financially and you will see why I am going open outcry.
LETS DO SOME MATH.
Credit Card Debt held for Cindy H. (Wheelchair & Freight + new seatbelt) $1500
Credit Card Debt held by self for medical purchases (Wheelchair & Freight + New Seatbelt and Ankle Straps ) $600
Ok so that doesn’t look too horrible doess it? $2100 dollars of credit card debt with 0% interest rates. WRONG. DEAD WRONG. it gets WORSE. PLENTY WORSE. At least Cindy H. Will hopefully find funds to pay her debt back. But that’s besides the point of this open outcry. And she is in a situation very similar to mine. So getting the funds to pay for her wheelchair is the same thing, a fundraising operation. And 0% Interest doesn’t last forever.
My Permobil Power Wheelchair is in need of repairs so let’s run over that quote.
My tilt system actuator is going bad and I need a new one. Total cost of just the actuator $1089 not including service to install the thing.
Batteries, yeah 3 years old and they are wearing down, time for new ones. Oh that’s only gonna ding me up for $1024 not including service to put them in
Original wheelchair dealer was a con didn’t give me my anti tip wheels that my chair shipped with nor the cushions, or at least thats what I am lead to believe by my current dealer. I will do an official inquiry to Permobil on Monday but guess what, those anti tip wheels, I NEED them. I have twice now nearly gone over forward where anti tip wheels would have stopped the scare dead in its tracks, this is bull to the tune of $475 again not including service fee!
Oh and lets not forget Permobil’s own absurdity here. All I need is a switch for my Permolock C assembly on my wheelchair that lets me lock into the car. But NO they don’t sell the switch on it’s own. They only sell the whole chair assembly. ALL I NEED IS ONE STINKING SWITCH. Nope I gotta fork over another friggen $770 and lets not forget the labor is not included! That is insane, switches fail, and yet if th switch goes bad the whole lock assembly needs replacement. Feh!
And so the grand total to bring my chair into safe and optimum operating condition, that does not even bring into account any seating modifications that I need to reduce pain nor any control modifications to make the chair easier for me to drive and keep me able to drive it through the course of this disease I have… is…
Here it is… $3358 dollars. You heard me that is over $3.25K dollars, crap your pants yet? Theres more…
Let’s add that to my current revolving credit debt, and since this cannot be paid using Amazon Storecard or BillMeLater which offers interest free financing on anything over a certain threshold, all this will accrue interest at approximately figure 17.99% instantly, choosing my AMEX card with the lowest interest rate, but the card would be more than maxed out because it only has a $2000 limit, in fact ALL of my cards don’t have a sufficient credit line! The only card that comes close is my Amazon card with a lofty $3200 line, but I can’t use that anywhere but Amazon and unfortunately my wheelchair dealer is not Amazon.com Wheelchairs , but even with that credit card it would be impossible to pay back an amount that large before the interest free runs out, and then there goes the insane 24.99% APR on that card!
On what little income I ‘take home’ with me each month $100 I am lucky to be able to pay back debt.
So let’s add all that debt up
Currently held debt - $2100
Pending repair debt - $3358 should I choose to accept it and figure out how the hell to divy it up across all my credit cards and put up with all the interest.
Total Debt $5458
People that is insane, $5458 of debt. Remember back to my fundraiser for the air conditioning and heating system . The debt that I would be holding would only be $2000 shy of a freaking whole house central air and heat system. And as stated above that debt figure does not include any of the modifications to my chair for drivability or seating. Those modifications can only be approximated. Based off of MSRP’s and some limited information I have
Head Array $5000
New Headrest $750
Oncoming Modification Debt – $5750
Total Debt + Oncoming Modification Debt = HOLY… $11208
That does not even figure in the estimated $3000 for a suitable seating system for my IRIS wheelchair, lets go ahead and throw that on the plate to fund. Mind you that $3000 will NOT be reimbursed by Medicare(less) nor Medic-offer-no-aid because our lovely government does not believe that someone in a powered wheelchair deserves to have a complex positioning manual wheelchair with tilt and proper seating ready to go at a moments notice should the power wheelchair fail. Really? Medicare and Medicaid, How the hell do you expect for me to get to the bathroom to use the toilet without a suitable wheelchair more less be able to get to a doctors appointmnt or my bloody monthly tracheostomy change. So after throwing that on the plate You get yourself a number that will probably result in most of my blog readers crapping their pants, that is If you have lasted this long without already crapping your pants. FREAKIN’ $14208
Ok lets see here, I have seen nice cars MSRP for $14208, and you can get a damn nice used car for $14208. Hell watching on the Velocity channel on television I have seen some REALLY nice antique cars go for far less than that, restored and running. This healthcare world makes me sick-er
But your probably reading this and saying Alin, what is wrong with you, what are you doing making an open outcry for money when all this is covered by Medicare… ITS NOT.
QUOTE from my wheelchair dealer. “So I found out that our not- so- new company policy is that, if the chair was not provided by X and the repairs are over $250, we would need payment up front and we would service and bill unassigned. So if Medicare pays, you get reimbursed.”Well that’s just lovely like I can afford to pay $12108? up front?
$3000 of which will never find its way back to me.
So lets go ahead and do a little bit of reverse math, getting rid of the stuff that can be reimbursed to me if I somehow get the money to pay up front. Repair Debt = $3358 + Mod Debt = 5750 Total Reimbursable = $9108
You read that right, that is more money than the A/C system in fact it leaves about $2000 to spare which would easily pay off the majority of the Currently Held Debt of $2100
Your probably thinking, “these figures are too big for me to even make a difference.” Hold the phone buddy!
Lets use the power of numbers now. And look at last month’s visitor statistics
Total Unique Visitors January 2013
Ok, see that box up there, 10786 people visited this site. If every one of them gave one dollar then I would have THE ENTIRE $14208 paid in full within a month and a half or less of this blog post. Now not everyone can afford that but a lot of people can afford 50 cents, even then this entire $14208 would be PAID IN FULL in 3 months.
Now think about this, Making Home Accessible Fund is a $220,000 fund goal. if 10,000 people donated ONE DOLLAR for 22 months the goal would be met and the groundbreaking could occur and the house could be made 100% accessible for me and my special needs.
Now you see how even 50 cents can make a BIG change especially when multiplied across a lot of people.
Don’t have money to give? Then facebook, tweet, whatever you use to share this blog post, this website, or the fundraising control panel any way you can spread the word helps! Even good old school printing the blog post and handing it to friends or word of mouth. Sharing helps! GO VIRAL!
Also coming in the next few days, hopefully I will actually sleep better and then subsequently be better about blogging I will unbox and show my CARES Harness which is a special harness to help me support my upper body while on an airplane, look like a pilot outside of the cockpit. Funny enough I do know how to fly a jet so if it all goes down soul plane style and they ask out back “Anyone know how to fly this thing pilot and co-pilot are dead” I’ll be the first one to raise my hands and scream “I DO! Even followed the BYOH Bring Your Own Harness rule!”