Alin's Site

September 29, 2011

Memoirs of a geisha… I mean stove… sorry. Memoirs of a stove. and Rett Syndrome, it’s FINAL!!! and a B-Day Card and granulation tissue and a new program to help me write better posts!

Filed under: Uncategorized — Alin S @ 11:49 PM
The special people old and new

The special people old and new

See the picture above showing our old stove and our new stove comparison shots, big difference huh. Well there’s a big difference both looks wise and mentally for me. That old yellow stove was the first stove I EVER saw coming into America. The first stove I had ever cooked upon. And finally the first stove that I and my love codename MyBigMouth cooked upon. Those events made the stove very sentimental to me so I had to take pictures of it before we got rid of it, and I had to embellish one of the pictures with our photos. The old stove was a very treasured object to us, or at least me… But it was falling apart, two of the burners didn’t work, the oven handle was getting wobbly, the knobs some of them were cracked, but we still loved and used that stove till some special people at Sears approached my Mom and Dad with a stove that literally sang out “This is your stove” The stove was very inexpensive thanks to the special people and probably the God energy that pushed my Mom and Dad to go to Sears that day. But, either way I am happy. The new stove is REALLY COOL! It has a special spot on the surface, did I mention it’s a flat top? Yeah every time I walk by it and see a fingerprint or something I am compelled to polish it, a bit of Stove OCD going there. Anyway this special spot is called TURBO BOIL ELEMENT and It indeed does what it says on the cook top! It will boil a full tea kettle in 3 minutes or less. I haven’t timed it, but it’s bloody fast. It’s a Kenmore range, those of you interested in model and make can E-Mail me. Then there’s the Warm and Ready zone that does exactly that, keeps food warm while in the pot while using very VERY low watts per hour. An awesome stove it is!

Not a holiday card but as good as one! My official Rett Diagnosis!

Not a holiday card but as good as one! My official Rett Diagnosis!

Shown above is my OFFICIAL diagnosis of Atypical Rett Syndrome, we are so happy to have this, it finally gives us a security in knowing what I have and me no longer being one giant unknown. I was officially diagnosed with Rett Syndrome Yesterday at 2:40 PM CDT. Yes I have it down to the minute! Yeah it’s in the holiday cards library, it’s not exactly a holiday card but it’s close enough and extremely valuable!

Dan card inside

Dan card inside

A friend of mine in the UK sent me this funny as hell card, so I scanned it as I do all cards. Funny though that I never saw this type of card here in the states. Guess that the British have certain Exclusive cards.

 

Oh and I got this cool new program called Grammarian Pro X2 which really fixes up my writing big time. So that being said my blog post’s will look a lot cleaner and read a lot better. I plan to go back through my whole blog and run it through the program and fix the grammar and capitalization and things; eventually… But that is a back burner thing.

Another one… Great

Another one… Great

Yet again, I got another huge granulation tissue on my tracheostomy. I have to use steroid cream on it for a week and then see if I need to zap it.

September 23, 2011

My new MountNMover system! and Pulmozyme Hell

Filed under: Uncategorized — Alin S @ 5:43 PM
Totally mounted

Totally mounted

Well Well Well after many months of fighting with Medicaid and Medicare.. I FINALLY HAVE MY FREAKING MOUNT-N-MOVER! Took me forever to get but its custom made for my needs and the tray is custom for my laptop and they sent me an extra tray for the laptop or whatever I want to use it for. I am really happy to have this on my wheelchair, click the photo for more pictures.

 

In other news we have been going through hell with my nebulizer medication Dornase Alfa / Pulmozyme that is used to help loosen my secretions and help me breathe. Everyone is denying it, FINALLY someone overturned their appeal but now the system is down so they can’t fill it at the pharmacy until the system is up. Thankfully I think I have enough supply to hold me over, if not our pharmacy is good about holding people over till computers come up. Why the hell do computers not have back up machines when it is health critical, and even in that case a back up for the back up and a back up for the back ups back up and then we need a back up to the back ups back up backup machine? MAKE SENSE!?!? I didn’t think so, just back the damn crap up like 10 times on running systems is what I am saying.

September 21, 2011

My new Leather Lighted Kindle Cover and Trach Zap!

Filed under: Uncategorized — Alin S @ 12:09 AM
I am happy I like it a lot

I am happy I like it a lot

Last Friday evening I ordered myself a Kindle Leather Cover in Black with the built in light. It is incredibly easy to use and incredibly secure for my kindle. It smells good too even!!! It feels really nice to the touch, like a nice heavy leather jacket. Almost like a leather bound book! It really feels nice in my hands and it is really awesome for reading at night!

 

I didn’t even bother making a public photo and public debacle of the stinking trach site this time, right where that last granulation tissue was another one took its place quickly. So I contacted Dr. Walner and we both worked together sending and receiving digital imagery and well I zapped it, hope it stays gone for a while!

September 10, 2011

Ear infection… and August 2011 stats

Filed under: Uncategorized — Alin S @ 1:28 AM
Ear infection (Mind the bluetooth headset... it's not at fault, I DONT THINK IT IS!)

Ear infection (Mind the bluetooth headset... it's not at fault, I DONT THINK IT IS!)

Well not much to say aside from I have a new GP doctor named Doctor Katz and she is AWESOME and today we found out I have a middle ear infection in my right ear (AGAIN) so I was put on Zithromax and Ciprodex. Greatt NO the bluetooth is not at fault.

August 2011 Stats

August 2011 Stats

September 9, 2011

Not too late to mail in birthday cards

Filed under: Uncategorized — Alin S @ 2:05 AM

Geez I have been having a lot of people asking me, oh no it’s september 9th, it’s too late to send a birthday card. NO IT IS NOT. Birthday cards will be accepted and scanned into the archive as late as November 30th (postmark date) at which that is the opening of Christmas Season and the close of Birthday Season. Anywho keep the cards coming. I’ll keep the light… err.. scanner on!

September 4, 2011

Sevo’s done, check out my ride, panic in my neck, card from Nathan,

Filed under: Uncategorized — Alin S @ 12:38 AM
Freshly awoken high on sevo

Freshly awoken high on sevo

Well the sevo deed has been done! and there are some photos on flickr of the wait and post op process and then me going home. I didn’t get a shot in preop cause the preop nurses are all in a hurry to get you into the OR. Which in my case is a good thing as I loove the sevo and the nitrous and the gas anesthesia. It is a great antidepressant. Sevoflurane for home use please to help insomnia and depression LOL :P JUST KIDDING, I know it is HIGHLY improbable that Sevoflurane will ever be released for home use. Anyway I had some great fun and the nurses and I even got to do something fun with my discharge papers, yeah if you go look at the flickr photos by clicking above you will actually see it says ACTIVITIES: HUG A NURSE. Which I did many times at the hospital. :) They are awesome there! Heck they even give you a card for using their hospital, thats pretty cool! Though I do wonder if that card gets billed to Medicaid / Medicare as a “Misc Expense”

Our new Ambulance Decal

Our new Ambulance Decal

Check out my ride, my van is officially an ambulance and therefore we needed a way to make it obvious without investing in expensive stuff so we got some custom magnets that state “PRIVATE AMBULANCE IN SERVICE DO NOT FOLLOW DO NOT TOW”

You would expect a picture here but there isn’t one due to how horrible the below segment is…

Ugh last night I slept like crap because I felt my trach site with my finger and felt what I think is the upper edge of the cuff of my tracheostomy tube, and I had never ever felt the weird sensation against my fingers before so it sent me straight into a panic / anxiety attack, I am still a bit anxious to hear from the doctor what the hell it is. However today I feel like I have a hangover because that’s how panic’s affect me, they make me really SLOOOOW the next day

Nathan card front

Nathan card front

Thanks Nathan for the card, I am really happy to have you as a friend. You are an awesome guy. :) HUGS.

September 1, 2011

Sevo countdown is on!!!

Filed under: Uncategorized — Alin S @ 11:45 PM

I know it’s a bit late for me to get this clock up and running but whatever. ITS SEVO TIME TOMORROW!!!

I will give an update tomorrow night however my doctor has a lot of stuff to do, trach change, bronchoscopy, granulation tissue removal. I’ll make sure he keeps CONCISE notes!

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