Hey y'all, I know it's been a while since I blogged.....
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I've pretty much been taking it easy....

There's been a few incidents regarding my kidney, I reached my one year "transplant-versary" on June 24th, Yay!

I had bloodwork done as usual at my appointment, and the doctor noticed protein in my urine, which isn't necessarily a good thing, but can be harmful in the long run, so he requested a biopsy to check whether it's the kidney function or my medication causing the problem. Well, it's not the kidney, so we're working on reducing the medication to see if that solves the problem.
 
Then the following labwork showed a small spike in antibodies in my blood. Which basically means my body is prepping up for an "attack" on the foreign kidney. An early precursor to rejection. So I had to go down to the hospital and get an 8 hour ivig transfusion. Standard procedure the doctor assures us. I go in next Friday for a second one.

The other thing I've been doing is a Netflix binge with Dani. 10 seasons of "Supernatural" in 4 weeks!! We laughed, cried, cheered, rolled our eyes, and made snarky comments at the TV screen every day. Now we can't wait for Season 11 on Netflix & Season 12 on CW. Of course it airs the same time as another show Randy & I watch, but that's what the DVR is for.

Another thing that happened recently is that I'm now formally employed as an "ASL Expert" for SignOn C.P.R.. An online company where people can practice sign language from the comfort of their own home.  This is my first "salaried" job since 2005!! I'll continue to look for another part-time or full-time job as well, but being in a small rural town with no reliable transportation is tricky. Hoping another online job would come by. If y'all want, check out my resume.

Now that the summer is half over and kids go back to school mid-August, it's time to dust off the laptop and start working again!

Have a great summer!!

 Day 5 - Fun

What do Deafblind people do for fun? All kinds of stuff!

Some like reading books, some do crafts, some play sports...I used to downhilll ski, horseback riding, be on a dart league and do needlework. I watch sports on TV, hockey and football and NCAA Basketball (Go Shockers! Heh).

There's really no limit on what we can't do, just with a little modifications, we can do pretty much whatever our heart desires....

Here's a variety of videos showing a variety of fun things deafblind people participate in:
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So, if us deafblind people can do all this.....what's stopping you?

Day 4 - Technology

As you see from past posts I mention a lot of technology that assist deafblind people in their daily lives. I mainly use the Magnifier option on my laptop that enlarges the screen for me as I still have useable sight. Other technology is the visual alert pager I mentioned yesterday. I also have an iPad that was provided by iCanConnect, a government subsidy program that provides deafblind people with the technology they need to connect with the world around them. If you have combined vision and hearing loss, you should check if you qualify for this program.

Here's a video showing all the technology I mentioned over the past few days:
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I hope you're enjoying and learning something new, feel free to ask me anything else!

Day 3 - Daily Living

 How we go about our daily lives also depends on how deaf and blind we are. The adaptations I use are mainly Low Vision tactics as well as a Visual Alert system which flashes a lamp plugged into it when the phone, door or alarm goes off. I also wear a pager that vibrates to the alerts too.

Below is my old video explaining some more daily living tactics that I and other deafblind individuals can use. It's open captioned but not voiced, sorry.
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Again, any questions? Shoot me a message!

Day 2 - Communication

Our means of communicating with others around us vary a lot. It really depends on a variety of factors: degree of loss, age of onset of loss, and personal preference.

I grew up being able to speak and communicate efficiently one-on-one for the most part, I can still do that but I prefer having an ASL interpreter for: important or complicated issues, groups, a far away speaker, and the like.
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Another communication option is using a Braille computer with a communicator option that allows the user to connect via bluetooth with any iOs phone and message back and forth with another person.

Other ways are explained in this video below that is captioned for the "signing impaired". Just click the "CC" in the bottom right corner.
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I hope this is educational so far, give me a shoutout for any more questions or information.

The last week of June is Helen Keller Deafblind Awareness Week as declared by President Ronald Reagan in 1984.

As I've said countless times, being Deafblind doesn't mean "totally deaf and totally blind", and people wonder how do we "live".  So all week I will focus on a different topic and invite y'all into our world of being Deafblind. As you read these explanations just remember it's just part of our lives and we don't need sympathy or "amazement" 

​Day 1 - Getting Around

As I say, deafblindness varies in different degrees so the tools we use to get around vary as much as our vision and hearing loss. Some people don't need anything and can get around fine on their own, others prefer a white cane, a guide dog, or a sighted guide. 

One technology tool one may use is a GPS App on our smartphone synced by Bluetooth to a BrailleNote to read directions in Braille. We can use this while walking or riding transit to determine where we are. A simpler method would be to have a business card holder holding cards with various destinations printed on them (as well as braille for the person to identify) to show the taxi or bus driver where you'd like to go.

Some deafblind individuals rather use SSPs (Support Service Providers) who basically are their eyes and ears. The SSP drives the individual around and guides them and relays all information to them - layout of the room, who's present, what's happening, and sometimes do basic interpreting (but are not permitted to do full interpreting). SSPs are available in only a few states, or even just a few cities. We need an expansion of this great program and somehow make it National.

If you ever get a chance to guide a deafblind person (or a person with blindness or low vision), here's a great video to teach you how to do this. Just keep in mind to ask if they need assistance first.

So if you have any questions about how deafblind people get around, just comment below and I'll be glad to answer.