Alin's Site

November 30, 2008

Doubling of E-Mails / Lag / Blog Subscriptions wonked

Filed under: Uncategorized — Alin S @ 9:14 PM

 

Website Repairs Image

Website Repairs Image

 

 

This whole FeedBlitz thing is 100% new and foreign to me, so please bear with me as I get it all set and adjusted, there may be doubles of E-Mail’s coming into your box, and some may not come at their proper time. (1 hour or less from post time)

However, I am working to make this all work smoothly and this is the first large transition my site has had to make in a long time!

Blog subscription’s service is DOWN at this time. I am working with FeedBlitz to fix this issue on my account. For the time being no one can create a new subscription or delete their current one! I hope to get this fixed quickly tomorrow or Tuesday!

Bunch-O-Website fixes

Filed under: Uncategorized — Alin S @ 8:39 PM

 

Website Repairs Image

Website Repairs Image

 

 

First things first, the blog failure has been cleared, you should receive this post within one hour after I post it! I have switched all of you over to a new system known as FeedBlitz, it works very similar to the old FeedBurner system that I am going to miss using. However this new system is a bit more complex at my end. But it is definitely packed with more features! It also has a lot of simple features for you guys. It has things like the ability to subscribe via our original E-Mail system, a brand spankin’ new Skype system, AOL Instant Messenger, Yahoo Instant Messenger, Twitter, and MSN Instant Messenger. This system will hopefully work much better for us.

I also went around the site and changed anything pointing to FeedBurner to point to FeedBlitz, Please contact me using the Contact Me page if there are any I seem to have missed!

I have also changed over the E-Mailing List subscription page, it is no where near as good looking as the FeedBurner box but will have to work!

Note the new PatientsLikeMe box is now available on all pages!

If you see any unusual differences in the sidebar on any page please contact me using the Contact Me page.

November 29, 2008

A big fat blog failure

Filed under: Uncategorized — Alin S @ 9:40 PM

 

A Big Fat Failure

A Big Fat Failure

 

 

Houston we have a problem, it has come to my attention today that our FeedBurner E-Mail system has gone down hard. It has been down for quite a few days now and most of you may not have noticed the outage, I sure have not. I have contacted technical support however nothing will likely be done till Monday, until the feed is fixed I will be manually sending the news updates via E-Mail. I hope to have this failure fixed soon.

Oh and, Happy Thanksgiving.

November 26, 2008

Computer repairs not done mad at Apple fun at Target

Filed under: Uncategorized — Alin S @ 8:17 PM

 

Me in front of the Apple store

Me in front of the Apple store

 

 

We took my laptop to Apple today to get it repaired and then went to Target.

At Target we had some fun. Mom rode one of the scooters there, it was quite funny us racing down the aisles. She was really good for being a first time driver on one of those. Though I won easy being the scooter only went maybe 3.5 miles per hour and my chair tops out around 6. She does not usually use the scooters but this was not our regular Target that’s smaller. This was one of those huge Target Greatlands stores with the grocery store inside of it. Too bad I couldn’t get a picture of us together haha, would be kind of a blind leading the blind picture.

About 30 minutes Later Apple calls and our fun comes crashing down. They are calling to say they won’t repair it under warranty due to “liquid damage” me and mom were furious. This computer is an alternative augmentative communication device. I cannot write and nor do I communicate any other way than verbally without this laptop. I even sometimes use it when I have selective mutism attacks to speak for me. So I medically need this laptop. And apparently Apple does not care. So Apple corporate is going to hear from me. We went to the store and I looked at the damage and it appears to possibly be a medication or feeding formula, it can’t be anything else since its a white color. We said close it up and we will take it somewhere else. That somewhere else is my overbed hospital table, yep you heard that right, I am going to fix it myself. I have fixed many laptops before including my own. The thing is you have to be “Certified” Well how does apple verify that I opened it and it wasn’t my friend who lives in Chicago who has an active certification did it. They can’t thus they just have to accept it.

I got the parts on eBay.com for $141 which is not bad compared to what apple would have charged me and then labor!

If you can donate please do, will help us absorb the cost of the parts!

Oh and HAPPY TURKEY DAY tomorrow! I will take some pictures.

Computer going in for repairs expect delays

Filed under: Uncategorized — Alin S @ 12:28 PM

 

Me in front of the Apple store

Me in front of the Apple store

 

 

We are taking in my laptop for repairs today to the CD drive and Keyboard so expect delays on E-Mail.

November 24, 2008

Domain

Filed under: Uncategorized — Alin S @ 4:32 PM

 

Domain Name in browser

Domain Name in browser

 

 

iguido.com’s server hosting package expired today which resulted in our long outage from 2:00 AM till 11:00 AM. All features are repaired as of now. All websites including www.alinssite.info and disabledplanet.iguido.com are working now.

November 21, 2008

Long Grove Nov 15th 2008 gallery is up

Filed under: Uncategorized — Alin S @ 7:05 PM
Mom and Tom Singing

Mom and Tom Singing

Took me long enough to get this gallery up.

Cough Assist picture gallery is up

Filed under: Uncategorized — Alin S @ 6:45 PM
Me and my Cough Assist Machine

Me and my Cough Assist Machine

I took these pictures on the 13th of this month. It took me almost 10 days to get them up here. I am running quite slow right now since I have a huge E-Mail back log. However everything that comes in on the same day is being answered same day. It’s just old stuff that I have to skip to keep up with current E-Mails. All HUMAN sent emails are being answered quickly. I am backlogged mainly on forum notices.

Fighting the cold weather

Filed under: Uncategorized — Alin S @ 4:22 PM
Me in my Ski Mask

Me in my Ski Mask

I get cold very easily in cooler temperatures. Anything under 65F (18.3C) and I am reaching for a coat. Anything below 45F (7.2C) and I have my whole kit on, which is made up of the following.

Me in my Ski Mask

Me in my Ski Mask

The first and probably most important is my neoprene spandex mix “dive hood” that is designed for cold weather tactical use. I cannot wear a hooded coat or anything thicker than this because of the laterals on my Stealth 2QCR headrest, wearing something thicker would make it impossible to get the laterals to lock in. With this we are able to still lock in the laterals almost as normally, it’s just a bit of a tighter fit in the headrest for my head, which I don’t mind. I have to have this dive hood since I get cold on my head extremely easily.

Silky Polyester Shirt

Silky Polyester Shirt

I avoid wearing cotton, cotton sweats, becomes wet and then causes chills. Wearing polyester has always helped for me as I don’t sweat in polyester as much as I do in cotton, for most people its the reverse of this. I use the specialized polyester wicking shirts quite often, they are especially useful on warmer days when my back is likely to sweat in my wheelchair, that way I don’t wind up bathing my back in a wet cotton T-Shirt of sweat. The polyester shirts are also silky and soft which is a feeling i really like. I also wear polyester pants (not shown) but no matter what I do I still sweat in my private area’s due to the vinyl incontinence cover on my wheelchair cushion, which I am definitely thinking of removing as I am not incontinent, and if I do get the suprapubic catheter I will likely ask them to clamp my urethra shut so that no urine can pass through to my penis and it all be routed through the suprapubic tube.

NRS Mystery Neoprene gloves

NRS Mystery Neoprene gloves

These are my newest addition to my arsenal, they are Mystery Neoprene gloves that are available at Altrec through this link. I buy a lot of my gear through Altrec for two reasons, I have a close friend named Aubrey who works there, and she keeps close tabs on my purchases. Altrec as a company is also easy to deal with with great prices and an awesome customer service team which Aubrey is a member of. But thats enough of the Altrec plug. I got these Neoprene gloves which are 2mm Neoprene like my Neoprene shirt, on the back its 1.0mm Mystery Neoprene which is patented to the NRS company that manufactures them, on the palm its 0.5mm hydroskin Neoprene. My Neoprene shirt is 2mm Neoprene everywhere so I was a bit nervous as to if the gloves wouldn’t be warm enough to handle the cold temperature. Definitely yes, in fact they are a bit too warm. Yesterday it was a 29F (-1.6C) degree day and when I came home and took off my gloves my hands were slightly sweaty! So these gloves are perfect for the ultra cold weather we get sometimes and whenever my hands are freezing. They are a very tight fit which allows me to type and do things that you normally have major difficulty with gloves on, with minor difficulty. The only thing I am trying to figure out is how the heck to get them to work with the stupid touch pad on my laptop.

Me in my NRS Neoprene shirt

Me in my NRS Neoprene shirt

I have not worn my Neoprene shirt out of the house yet, I am saving that for sub zero conditions that need an extra warm layer under the coat that retains any heat you put into it. However I currently tend to wear my Neoprene shirt when I am sleeping since it is tight and warm and gives me an odd sense of comfort. I also love how smooth and rubbery it is to the touch, I like to lay on my side and rub my arm till I fall asleep. This is one of my ultra cold weather gear pieces. Wearing neoprene clothing is becoming common in some autism groups, especially ones that I am in. I wonder what causes it to be so dang comfortable.

My Rubberized Nylon Coat

My Rubberized Nylon Coat

SHown above is another good piece of my cold weather gear, it is a microfleece lined rubberized nylon coat. Although it is very thin it is extremely warm, even in 29F (-1.6C) degree weather yesterday. I also like that the outside is rubberized nylon since those kind of materials feel good to me and on warmer days i like to wrap that around my hands when I don’t necessarily need gloves but just some shielding from wind and some warmth. I also like that the inside is microfleece since some of the furrier things can cause my neck to spasm when you put it on my neck. It is hooded but we just stuff that inside and or have it positioned in such a way it protects the front of my neck.

My scarf on my chair

My scarf on my chair

Attatched to my powerchair is a nice black scarf that is about 4-5 inches wide and is made of very heat retentive micro fiber or something. Either way it is extremely comfortable and almost looks like it came with the chair. we keep this on the chair all the time in the winter. If it’s not cold enough we use it more to keep the back of my neck warm.

So now all of you know how I keep warm in the cold. How do you do it. Tell me in your comments!

Photo gallery is attatched, click any picture to go to it!

November 20, 2008

MDA clinic visit #1 done

Filed under: Uncategorized — Alin S @ 10:50 PM

 

MDA Muscular Dystrophy Association Logo

MDA Muscular Dystrophy Association Logo

 

Today as I had mentioned a week ago we went to the MDA clinic downtown at UIC Chicago, the drive both ways wasn’t too bad but it was a bit of a disappointment today. The woman at the counter was a bit curt with mom when she crossed over the “Patient Privacy Barrier” which is a stupid thing that has to be enforced so people don’t feel, invaded, and also due to the stupid HIPAA laws. Mom got upset but the woman ended up being very caring and gave her and me hugs before sending us in back with our nurse. After that the nurse took my vitals and we began being bombarded with doctors. First we had a respiratory therapist come in and take a FVC (forced vital capacity) which I will get the results for on Monday, and then the speech language pathologist, nutritionist and their associate came in. After that I mentioned the neck brace and the OWNER of Ballert orthopedic supplies came in the room, I had lots of fun talking with him and gave him the card for my website. He might even possibly have me help re-do the Ballert Orthopedic Supplies (link) website. We discussed different types of braces and ironically I had been researching the Ossur Miami J & Aspen for a while and he said that would be one of our top options, along with the Ossur Aspen, and the Ossur Atlas brace. After him we saw the OT and PT and then they sent in the neurology residents and then FINALLY the actual neurologist after nearly two and a half hours of being bombarded by various professionals. They did their usual examination which got painful at the arms and legs and neck as usual so I had to take my painkiller. The thing that me and mom got a bit annoyed with is the fact that we still can’t get the genetic testing from Athena, they want more records, and more test results, before we can go to Athena. And then they mentioned a follow up which we said, not till we do the athena. It’s just too dam hard driving downtown and back. Either way I don’t mind phoning around and pushing copies around, what I DO mind is having to go back downtown repeatedly which I don’t think will need to happen much once they get more test results and see what tests I have had and can take at my hospital.

The entire visit was about three hours!

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