update on me

[Kristina1]

I haven't posted in a while so I wanted to update.

One of the main reasons I haven't been on here is... I'm writing a book!

Or trying to. It has nothing to do with ALS or anything autobiographical. It's a scifi/fantasy romance. I've long been an avid fantasy reader, and always had stories of my own. I tried writing them a few times over the years but never felt the drive to finish them.

Well I'm finally feeling that motivation...or maybe it's that I'm home with little to do for hours each day and the clock is ticking on my ability to type with fingers. I can use the middle finger on each hand to peck the keys. The other fingers are useless. I am trying to learn to type with a headmouse but it's very slow and frustrating with many errors, so im going as fast as I can with my remaining fingers. They tire out which means I have to choose between social media and my book, and ive been choosing my book. I'm about 1/3 the way through it (ive written 33K words).

As far as everything else.. I think my neuro is excellent and my clinic has been an incredible resource, but when I have visits I get this feeling that I am a very sick person and that I'm dying. And while that may be true, I don't feel like that when I'm at home. I often feel pretty good about myself. Not that I'm getting better because I'm not. But I feel like I might have years, like things might be slower than average, and I feel positive. Going to clinic, especially my neuro in particular, often pops that bubble. It's hard to explain. Does anyone else feel that?

I finally got my custom PWC through insurance and I love it. It's a much better fit and comfort than my loaner one was. I'm still walking at home, but use a wheelchair outside the home.

BiPAP at night is definitely helping me!

We also got PCA services set up which is a huge load off my husband. We applied for my son as well (he's 6 with severe autism and comorbid conditions) so it really is such a help.

My kids and I traveled to be with my parents and siblings for Christmas. We had a beautiful time with family, then returned day after Christmas to surprise the kids with a kitten. She is so sweet. Playful with kids and snuggly and comforting with me.

I guess that's it. I hope you all had a wonderful holiday and New Year!

 

[Nikki J]

Great to hear from you Kristina! I was getting concerned and about to email you to check in.

Glad you have been away for such an exciting reason. Do let us know when you are done writing.

It sounds like things are really going well and I am happy to hear.

I too have a love hate relationship with clinic. It makes me think about things that I mostly ignore

Happy you had a good holiday and congratulations on your new family member. A picture would be nice if you can? What is her name?

 

[Kristina1]

Let's see if this works

 

[Nikki J]

Oh she is adorable!

 

[KarenNWendyn]

Kristina good to hear from you, and I’m so happy for you that you’re doing this. You sound so positive and hopeful. It’s nice to focus on something other than ALS. That just might keep you going longer. More power to you.

Your kids and kitty are adorable.

I’ve been writing a book on living with ALS, but your book sounds so much more interesting and fun. Sounds like it keeps you engaged. I take long breaks from writing mine.

 

[Kristina1]

Thanks! Her name is Minerva, or Minnie for short. She's named after Minerva Mcgonagall from Harry Potter. My older two kids wanted a HP name because my mom's cats are named Tonks and Luna (also from HP).

Thanks Karen! My book is definitely more frivolous than something serious like you are writing. It's a nice escape but I don't know that it will leave any lasting impact like yours. Still i hope it will make people happy, and it's enjoyable for me.

 

[KarenNWendyn]

Still i hope it will make people happy, and it's enjoyable for me.

And that’s what matters most.

So I take it that your Minerva is a Gryffindor.

 

[KimT]

Kristina,

I've been keeping track of you on FB and saw your PWC. I'm so glad you're writing a book!

Happy 2019. Don't let the clinic get you down. That's what ALS support meetings do to me. Our local representative said she didn't get close to any members because they are all dying. She also said we shouldn't turn our meeting into a complaining session.

 

[azgirl]

good for you, writing a book. It's all about finding positive ways to spend your time and writing is something we can do until the end. Such great therapy I have found.I hated head mouse and found I was much faster with head stylus.. It looked ridiculous but functional.I started practicing with eyegaze as soon as my fingers failed and so glad I did!

clinic I dreaded but came away each time with useful advice or new equipment.

a pet is so soothing, and your Minnie is adorabl.e.

 

[Kristina1]

Kim that's so horrible!!! Is there anyone you can complain to about this person leading the group?

azgirl yes writing is very therapeutic! i will have to try head stylus... how does eye gaze compare to head mouse? is the keyboard and clicking/right clicking easier to do?

if anyone else wants to be FB friends just PM me. I check in there more often since it is so quick and easy.

 

[azgirl]

all the clicking is easier with eyegaze.

 

[affected]

this is awesome Kristina - I am a huge fantasy fan.

I can't wait for your book!

 

[wishmobbing]

You go, girl! Happy proceedings with your book! Thank you for checking in and sharing charming pictures.

Apart from the reality check clinic visits you seem to have found a good way to deal with this beast. I remember you saying you chose your avatar because it makes you happy. That's the secret. Do stuff you enjoy.

 

[diagnosed2016]

Kittens make everything better

 

[chally]

Sounds great love positive attitude

Chally