Alin's Site

Yeah yeah yeah I know the blog has stagnated a bit.

As some of you may have noticed from a previous blog post “Oh and those of you who actually really pay attention to this blog, which I am hoping the majority of you DO! you may have noticed that the womb and latex shirt have DISAPPEARED from the blog. That is because the orders for them have been canceled or otherwise reversed / rescinded.” Well that freed up some of my monthly allowance and I have more coming next month! So I decided to use my money to get myself MORE PVC rain gear, ever since I got my BLUE RAINCOAT I have been absolutely OBSESSED with rain gear. But that’s just typical for an amish like me… for we shun fancy things like electricity… wait thats a quote from a Weird Al song, What I meant to say is But that’s just typical for an autistic like me, for we obsess on certain things very often.

So this one WONDERFUL seller named Alma on eBay who sold me the blue raincoat had a lot more gear for sale today and always puts gear up for sale and tells me before she puts it up for sale, makes me feel special.

As you know Autistics very commonly acquire interests / sensory obsessions after a ‘first exposure’ well this blue raincoat was my true ‘first exposure’ to actual serious rain gear that is unlined and super warm smooth shiny and just awesome in all senses, smell, sight, taste, sound, touch. All of it. I am sure that I will have acquired an interest in rainwear at this point.

So your probably chomping to take a preview at what ‘sensory food’ i got on the way! And also a glimpse at a piece that is similar to my blue raincoat but not quite mine yet, still gotta see if my low bid wins.

Here you go, the stuff im gonna be getting.

PVC / Nylon Pants

I used to have a wonderful BLUE pair of SHINY PVC / Nylon pants that somehow got ruined or thrown away well I got these to replace them and they are very noisy and awesome according to the seller. Woohoo!!! I love noisy nylon and PVC

Heavy HUGE raincoat

I couldn’t help but bid on this one, this raincoat is HUGE. And smooth inside and out like my one I have. Slightly less shiny but probably just as clingy and noisy and nice!!!

“New PVC Vinyl Misty Harbor Raincoat Slicker Rain Jacket with Visor Hood, Wet Look inside, Zipper & Snaps, & Pockets.  It is in NEW condition it has not been worn. Men’s Large with

flat measurements of:
Chest 53″
Back Length 31 1/2″
Sleeve Length Pit to cuff 21 ½”"

In other words, its HUGE, I’ll be enveloped in this jacket for sure! How to make one Alin Happy, envelop him in heavy PVC!

PVC Bib Overalls AND Jacket

Whats better than getting a clingy PVC coat? Getting clingy PVC overalls to go with it that are nice and crinkly nice awesome PVC. Boy will I love all of my new Sensory Food.

I Will be sure to take photos when I get all of it and you bet I will be wearing all 3 items at once (including the bib overalls so technically 4 layers) and then my blue jacket to top it all off, wooo 5 layers of nice PVC!

The facebook message that started it

Well you see the Facebook message above. Well I posted that Tuesday, little did I know that my friend Greg owner of newsdemon.com would end up suddenly ORDERING one for me with next day shipping and it arriving on my door step TODAY. Yes for about 2 hours this Kindle was a UK (Unidentified Kindle) I looked everywhere thinking it was fraud, checked my accounts, checked everything for charges and saw none. Then thought back to this message from Greg. “14 hours ago Greg: “Sent you a little something in the mail. I think it will arrive today (fingers crossed). Let me know how you like it.” Then I E-Mailed Greg and he replied “I saw your post on Facebook and just thought you could use it.  You have always been helpful for newsdemon, so I had my assistant order you one.” Me and mom were like OH MY GOD!!!!

SO a very good day today!!!

Trach Burn + Solarcaine

Ok so yesterday I took a really DUMB move with my trach. I decided that in accordance to a little article I read about killing off bacteria and fungus I would expose my trach to my UV-C Sterilizer light, yeah it’s a little handheld wand type thing and it DID say DO NOT EXPOSE SKIN OR EYES DIRECTLY. Well I didn’t DIRECTLY put it on my trach area and it STILL did this, this is essentially mild sunburn, only generated by a handheld device. I did this in hopes of killing the fungus or bacteria, no dice, just a big burn! OW OW OW! Thanks to dad bringing me solarcaine tonight It  feels a bit better and hopefully will heal fast. To mitigate the bacteria or fungus I took silver nitrate to the area, as I will from now on. Infected and local to a tiny area, kill it with Silver, fungus, Kill it with Silver. No more of this UV crap!!! So yeah they should change the label on the UV wand to “don’t point this thing at your skin or body or eyes PERIOD not even indirectly! and especially don’t point it at your trach!” Oh well lesson learned the hard way. Hoping for fast healing!!!

Weight Chart

I never have brought my weight up on my blog. I am underweight and have to watch my weight carefully. LOOK AT WHAT HAS BEEN HAPPENING THE LAST 3 DAYS IN A ROW. 3 pounds lost in 3 days, GIVE ME A DANG BREAK. Time to break out the high calorie stuff and also pump more into my g-tube.

All in all things are OK aside from the trach-burn. It’s not Sunburn its Trachburn

Moon in da clouds

Its been a very long time since I took a single nature oriented photo and I thought the moon looked pretty cool in the clouds on sunday so I took a pair of photos. One with flash and another without, they both came out quite cool! It almost looks like LIGHTNING In the clouds! So definitely a good moon photographing night! Sadly last night the sky was clearer the moon fuller but unfortunately it was too low in the sky for me to get anything with all the tree cover. Oh well!

Slight infection eh?

Rather than BORE the entire blog with details on a daily basis on YET ANOTHER trach site infection I decided I would wait and see what happens, yep, is infected. After 3 days on antibiotic cream it’s looking eons better than when we started. Oh well, tell me people, do you enjoy seeing the before / after or do you prefer it this way just seeing the interim and the after. honestly I think I want to go back ti the before and after system.

1Password + Mac OS X Lion

Well well well looks like us OS X Lion beta testers got a little love from the 1Password team at agilebits.com which is a GOOD thing. Because I use it to instantly fill forms and passwords with a two stroke of my Command and \ key at the same time. Woohoo!!! It WAS working but when Apple pushed another update of Lion to us testers it broke because it used an older method of getting into Safari that Lion no longer supports but now they got it using the new method so all is well

Me and one of the awesome nurses, she has a nice smile

Yesterday I got my tracheostomy tube changed. As usual I had it done in the OR. 1:00 PM was the procedure start time, a little late and then 1:05 PM was when i was KO’ed and I woke up around 1:30 PM. we Finally got home and settled in around 3:30 or so. Mom went to the gift shop and registered in a frequent-flier program because she buys things there often. As a gift they gave her the choice between a blue elephant and a pink monkey with swirls she chose the pink monkey for me. I really love my little monkey and I took a lot of pictures with the nurses and with my friend Alma from the rehab office. I hope you enjoy this post. I plan to take pictures next time too.

All zipped up and happy

I also got this awesome soft smooth warm unlined shiny shiny awesome PVC raincoat today that I had ordered for myself. I have decided to give myself a little bit of money to spend on myself to ‘feed’ my autistic needs and desires each month so I ordered this coat shown above and below in the video.

and a few other things shown below which I will blog about when I get them..

I need to get more sensory food.

Clock is gone since trach is changed

THE HEALTHCARE SHUTDOWN HAS BEEN AVERTED!

I president Alin have a press release written from the Oval Office a.k.a. my bathroom. I have communicated with someone from the state medical department and they are going to fix my healthcare up. I am going to go on the privatized plan but all my doctors are covered under my hospital so they are going to get the hospital covered and that will do a “Domino” effect coverage on ALL of my doctors. So all is good! It is still a possibility of having some hiccups and bumps in the road but there will NOT be a healthcare shutdown.

And yes I mean it. I typed this blog post while sitting on the toilet!

April 2011 Stats

Downtrend in unique visitors in April however a continued uptrend in repeat visitations. looking good!

(CLOCK REMOVED SEE HEALTHCARE NOT SO SHUTDOWNY AFTER ALL POST) It’s just like what they had going for the big Government Shutdown fiasco. Well we are dealing with something much more crucial. My healthcare could come to a screeching halt on June 1st and become so sub standard that it would be a severe threat to my life. To the point it could very well kill me. My 8000 dollars a month Dornase Alfa would come to a grinding halt, I need that to prevent my trach from plugging up and my lungs from plugging up, I could literally die of internal suffocation. My 5000 dollars a month Tobramyacin would come to a grinding halt too, I need that to prevent my lungs from becoming infected Both drugs in the end are nebulizers that I take to control my lung secretions and ward off infection! Thankfully my Tracheostomy change for July and my Baclofen pump refill will be covered ONE TIME exceptions under this so called ‘new’ healthcare plan in Illinois called Illinicare and Aetna Betterhealth which are privatization of the Medicaid system unless you are a wavered individual. My supplies, trach and feeding won’t be covered either under this ‘new’ plan. Thankfully I am going on Medicare as of Aug 1. But what do we do between June 1 and Aug 1?!?!

Well that is where I President Alin stand along with the house and senate here, we are doing everything we can to stop the Healthcare Shutdown from happening and we guarantee that one way or another we have a emergency contingency plan. Oh wait, this is a house not a government, bah whatever. to those of you who get the joke. Though the rest of this joke is not a joke at all, if that clock runs out and I don’t have some sort of healthcare plan in place I could very well be screwed!

Let there be lots of prayers for me and that we halt this countdown clock sooner than later!

Once on Medicare I will receive the QMB (Qualified Medicare Beneficiary) Waiver and be reverted to old school Medicaid Why can’t they just keep me on regular old Medicaid till I switch to Medicare? Well that I find out tomorrow when I speak to the state healthcare director.