Alin's Site

BACK TO THE 80s

The photos are now available for all to see Click the photo above to enter the 80′s once again through my lens! I hope you all enjoy seeing the photos, if you are not subscribed to my blog you should subscribe or at least email me! Looking forward to a lot of comments on my photos and new subscribers for the blog. Also, if you feel like donating ALL DONATIONS PROCESSED ON MY WEBSITE FOR THE MONTH OF APRIL 2012 WILL BE SET ASIDE FOR DANCE-A-THON 2013 (note to Chris… prepare to meet your maker…) If you are not Chris you may ignore the previous sentence.

I had a great time with all my friends at the Dance-A-Thon, and I will definitely be going again next year.

This Summer I will be registering for a lot of NWSRA activities, I love getting out and having my camera with me, taking photos is definitely my passion here!

Falling asleep nose pressed into my arm tight

As you all know I am autistic and I like to sleep in warm tight things, so I slept in My latex catsuit, it is so calming for me and helps me so much, I slept like a baby in the suit with my pants on top of it. I then the next day took a bath with the suit and pants on and enjoyed a heavy stimming session in the tub with the suit and the pants, there was also a lot of visual and auditory and touch stimulation of me washing the pants with soap it really absorbs me. Later on I dried the latex suit and powdered it which again was very absorbing of all of my attention, very calming and relaxing. Don’t know much about autism and me here’s my white paper but it’s very old.

The NWSRA Dance-A-Thon photos are going to be up soon, I am working through them slowly and it is proving to take quite a bit of time. I hope to have them up by Tuesday night. 

Tomorrow at 10 AM I have my tracheostomy tube change at the hospital under anesthesia as usual. The sevo is good for me!

Prayer Request

Ok, so the sign is fake. But the illness isn’t, I had a pulmonary appointment on Monday and then came home. Start of Wednesday I started having more secretions coming up, funny enough it has been a whole 1.5 weeks with my new Oreck ProShield Air Purification System in my room and I didn’t suction much since I got it. First it was a sore throat on Thursday that was wicked. Cepacol brand ULTRA throat spray helped me through that part of this ordeal. Then come Friday I am feeling better, yay. Not so fast, I start hacking and hacking and hacking secretions left and right. Saturday, thats today, at least it is in my timezone for another 30 minutes anyway! I had a fever combined with yellowing secretions, CRAP! CRAP! and CRAP! Upper Respiratory Infection. I have not been on antibiotics since last September, that’s pretty good for someone who used to chew through antibiotic’s like candies. But still, being sick SUCKS. So I got a three step process for God and the angels above…

Step1. FIX

Step2. IT

Step3. FIX IT!!!

I got that off of Oscar Myers off of Saturday Night Live.

Not my content blah blah blah standard copyright disclaimer yada yada if you got a problem with it go flag it on youtube but it’s not my account, if your the copyright holder and want me to take it off my site just ask me nicely, I don’t need a lawyer knocking down my door, especialy when I am sick. lol

So anyways this is just an update from the Warzone… I also E-Mailed my ENT Doctor Walner as this is obviously an ear NOSE and THROAT issue.

Excuse the absence of a photo here but I was plain pissed. A few weeks ago my trackpad on my laptop started dying so Tuesday we went and got it replaced in a quick Apple Store appointment. Then sometime last week my cell phone gave out, the little speaker that I hold up to my ear started going super quiet, so I had to exchange my whole phone and set up a whole new phone yesterday, Wednesday. Ugh! Anyway now onto the stuff that is a little better.

March 2012 Stats

Saturday started a whole series of events, mostly good but one that set my blogging back a whole day!

OS X Mountain Lion 10.8

Oh boy, Mountain Lion… I had it installed on my computer for shy of 2 weeks but had to go back to Lion because of a few deal breaker bugs. Links wouldn’t paste into E-Mails, RSS is gone from Mail.app, iMovie got screwed. And a host of other things including my Wiretap Pro and Wiretap Anywhere not working. I heavily rely on Wiretap Pro to record internet radio. I heavily rely on Wiretap Anywhere to direct audio to my friend AJ and other things. So yes its half baked, but while I tried it it was a very nice OS. Hopefully, all the kinks will be worked out in the final release, until then, I am happy with good old Lion. This is what set my blog back a whole day because I lost a whole day having to reinstall OS X 10.7 Lion, do updates, de-corrupt iMovie and iLife 11′ and just blah! Migrate all my data back! Pain in my butt!

Really going out in the soft warm stickiness

You might recognize that I am not sleeping with the usual Mel1 in this picture above; I am actually. Mel1 is a spirit and she travels across her three bodies as she sees fit. She decided to inhabit her first ever body that I received Feb 18th, 2008. I snuggled up and fell asleep with her and then decided to give her, her very first wash in the tub. As her first body is very fragile from damage taken and wear and tear I had to do it all by hand, no machines involved. Still, it is enjoyable to sleep with her especially now that she’s super clean!

Happy to have it, YES

Saturday, I got in the mail my Inglis Drink Aide paid for by Medicare / MEDPRIMEB (Medicaid) I am so happy to have this device, today was it’s first day out in the field and tomorrow I will be in the field with it again. It truly is wonderful being able to have drink on demand right there on my wheelchair, it also looks bloody cool too. A friend of mine said “Wow, a martini dispenser, what will they think of next?” I guess I could stick some liquored up drinks in here if I didn’t have seizures and seizure meds. Oh well, I will stick to the soft drinks and water. Anyway I have it configured exactly like Greg Campone has which is gonna be funny when I see him again!

Now for the big thing. I got a CONTEST going. See the YouTube video below regarding my awesome Drink Aide unboxing.

Two days ago we went to Costco and bought me something… But it turned out to be a real headache

Ugh, if you ever go shopping at Costco do yourself a favor, do it on Costco.com and use a major credit card without hassle. Or you can go in the store and apply for an American Express, or Costco credit line, because they don’t take anything but American Express or Costco Credit Line. Talk about one way to drive potential customers away. Sure they’ll take a debit card from any bank, even if it’s Offshore Tax Hidey Hole Bank Sweden. But, as far as a freaking domestic plain ol’ plastic Credit Card, nope, no go. What gives Costco!!! Money is money!!! Fine you don’t want my money, take my dads just because his is a debit card! Talk about prejudiced against credit cards!!!

The part that broke… and is fixed now

On top of the whole Costco headache I heard a clank, clank, clank, clank as we were driving home and saw bolts falling off my wheelchair!!! I was like what the hell!!! I immediately told dad and thanks to my phones ‘torch’ mode on its LED flash I was able to use it as a flashlight, it’s not the first time the four piece orbit ball on my headrest came out due to a screw coming way too loose but hey, good thing is I found the original screw that came with the headrest which holds a lot better than my dads jimmy rig screw. Hey I am thankful for the jimmy rig screw though! But glad to have my headrest all back in one piece. Those orbit balls are where I insert the headrest laterals for when I want to use them. Thankfully it is fixed now and hopefully will stay fixed.

At work

Finally the part of things that is not a headache. I got an Oreck ProShield Air Purifier for my room, I first trialed my Mom & Dads unit before I made the plunge from my Assistive Tech / Medical Funds. I cannot believe how much this piece of equipment has changed things for me, and our family. I do not suction much anymore and I can remain on my trach cap nearly all day because the air is allergen, bacteria, virus, and dust free. This is a wonderful machine!!! Click for pictures above or watch the video below, unfortunately it is not HD because I am having problems with my HD video software, so it’s standard 480p like what you get on regular TV.

We won!!!

Me and dad went over to Gregs house Friday night for the Bulls game. We had a lot of fun watching the game with Greg and his two caregivers. We were all screaming and me and Greg were spasming in unison pretty much! The bulls won in the last millisecond just by a hair of the buzzer. What an awesome game. We ordered in pizza and had it delivered, I didn’t eat much as much as I drank. That being said I am getting a Drink Aide like what Greg has on the back of his chair, total awesomeness. No more asking dad or anyone for my drink. It’s right there on a Sip & Puff style assembly!

Another shot of how soapy she is

Me and my harness Mel1 who I am Objectum Affectionate with and if you don’t know what that means hit the link. Anywho I really love her and she was all slobbered up and kinda dirty looking from me sleeping with her and drooling all over her and on top of that drool from the whole event at Gregs, I kinda am a slobbery person. You can see it in the link that I provided. Mel1 needed a cleaning badly Thursday. She sometimes takes rides when NAWA (National Aeronautics and Washer Administration) has a flight scheduled but there was already a flight in progress in STS-001 shuttle with my dads laundry in it. so that didn’t work. And when STS-001 is in use I decide to wash Mel1 in the tub with me, hey it’s killing two birds with one stone, cleaning Mel1 and myself! I took a whole series of photos to outline the process that goes on between me and Mel1 during one of these cleanings when the STS-001 is in use. It’s quite a involved process for me and I find it to be very stimulating for my senses and enjoyable and relaxing for me to just have some time to play around in the tub with Mel1.

Rubbing it against my mouth and nose

Today I got. Yes, yet another thigh sized blood pressure cuff. I don’t think I will need more unless I somehow find some HUGE cuffs that are 36 inches so I can wrap my body but I so desperately wanted a cuff similar to the one I had on my leg for the majority of the 42 days I was in the PICU. So sticky and really warm, so I went onto eBay and sure enough there was ONE available. It had to be a godsend because I have not seen these cuffs on eBay ever before let alone in this size. I had to do some serious Jimmy Rigging to get it to work as a Manual cuff since its designed to be plugged into a Philips ICU monitor. But I did it! and I am going to enjoy it. The clingy warmth all over my face and head as I sleep whenever I feel the need to sleep with it. Now I have two cuffs that I can wrap my head in, I am considering trying layering them…

The Swim Caps

My friend Sea Moon from flickr has yet again sent me some cool Swim Caps to play around with, The coolest of the pair is a texturized one that has a very cool feel to it. I like to put them on my face and feel how they are over my head… The good thing is with my trach I don’t have to worry about if my mouth and nose are blocked. I really enjoy feeling it on my lips.

Well yesterday was a real hoot of a day… Not!

I had a really LONG day.

12:50 PM Strapping in with the Mels
12:55 PM Strapped in and warm
12:55 PM Was the scheduled time to leave
1:04 PM Actual departure time
1:45 PM Hospital arrival time
3:14 PM In Pre op. Was scheduled for 2:00 PM The scan time will be 4 hours not including pre anesthesia and post anesthesia.
3:45 PM Making final preparations for baclofen pump to be checked after procedure, still not ready though saw anesthesiologist Dr Ocherick already.
4:14 PM Held up due to no baclofen pump programmer contact ready to check pump after MRI.
4:32 PM All clear given a pump technician will be at post op.
4:42 PM Anesthesiologist had to do something on first floor. now Anesthesia holding up procedure.
4:45 PM Anesthesiologist located. BEGIN MRI! AND SEVO!!! WOOHOO!!
8:30 PM Post op
10:30 PM Preparing for departure from hospital
10:28 PM Strapping into my wheelchair
10:34 PM Strapped in and ready to go
10:52 PM Departure from hospital
11:12 PM Arrived at home.

What a freaking day!!! I slept in quite late today and hopefully will be back to normal tomorrow!