Day 1-why I write/social media

Welcome to day one of the National Health Blog Post Month! NHBPM from WEGO Health will have bloggers posting 30 for 30-a blog a day for November, using prompts to guide them. Today the choices are: why I write about my health, or what I like about social media/the Internet/online health communities. I actually am going to combine these today-as my yesterday/Halloween is a perfect fit.

My pain tends to be worse at night, so my day usually is late afternoon through early morning. I sleep when most people are working & am up all night. I started blogging-usually after midnight...after seeing how a soldier with PTSD was told that blogging & talking about his life could help. The show was the PBS show Sherlock, the soldier Dr. Watson. It seemed to help him & so I started doing a picture a day/blog. I use photography as a coping mechanism, & so doing a picture a day blog seemed like a good fit. Example? Tuesday night. Mom & dad had gone to see my 2 nephews & babysat while my brother & his wife were out. It really depressed me that I was stuck at home, not going to a great costume party, or seeing my adorable nephews, & not out buying candy & decorating my front door for kids. It was a normal night inside, as usual. Mom brought home 2 cute sugar cookies, & determined to not be sad I started taking pictures & created a happy Halloween picture card to send to my family. After finishing that, I started painting using the ArtRage app on my iPad. Being able to pull up all sorts of various paints/drawing pencils/art supply apps (without the mess or expense) has become a lifesaver to so many disabled people, whether they are physically or emotional handicapped. After sketching out the flower I started painting it using watercolors-this specific app has a feature where you can bring up a photograph to refer to & actually pull colors from it to paint with. It is as close to painting as you can get, & there's no way a certain fuzzy bunny can jump up in bed & mess up wet paint.

Around 2 AM I needed a break so I turned to AMC's Fearfest Halloween marathon & as you can see the screams of the actors had her ears raised most of the night. I watch a lot of tv & Netflix streaming movies, & it so helps me refocus my mind off of the pain. During a commercial I went & took a picture of the gorgeous full moon. The yard was bright with reflected light, & I just stood in the chilly air for a bit in the silenced glow. After hours of terror, I fell asleep around 7 AM. Dad woke me up letting me know my brother & family were coming by, & after walking the 20 steps or so to the back porch, dad & I watched the first of the hilarious Zombieland as mom got the house baby friendly. My sister-in-law & my 1 & 1/2 year old nephew were dressed as Lucy & Charlie Brown, & my brother was Obi Kenobi & my nephew was a perfect blonde Luke Skywalker. It was if they worked out how to get 2 of my favorite things from childhood together meeting! I was so sore after so came back as they left & watched more Fearfest, read some more of my kindle ghost story, took another moon shot & inverted it, & as a treat lit a ton of candles.

I got depressed again & so I reached out to my online community. I cannot stress how much having someone who can relate exactly to what you feel physically & emotionally helps. I know at any time of the day/night I can find a friend, online, who I can talk to-it is such a great feeling. Having that accessible network is crucial to coping & survival. Without being able to gt out my emotions & talk I would be an absolute basket case. I'm so lucky to have hat-I can't imagine being housebound without the technology of today. I consider myself so lucky that I am sick in a time where I am never alone-there is always someone I can reach out to-as awful as life can be I am blessed with that knowledge.

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Simply Sunday

As I sit listening to my beloved rain that I love but my evil body hates, I focus on the little good things that have happened in the past few days. Chai bunny remembered how much she loved to get in bed with me for bunny massages, & has been up with me, getting her ears, little face, head & jaw rubbed no less than 15 times at least the past few days. She has a place on her tummy which entails a vet visit tomorrow or Tuesday, but today I'm concentrating on her fuzzy face.

I finished my 4th book this year! It was almost 700 pages & involved me checking it out from our ebook library 4 times, but totally worth it-the first book in the Girl with the Dragon Tattoo series. I just got book 2 from the library. Chai bunny & I shared a strawberry today...her first & she loved it! I got several free ebooks & a few on sale that I can't wait to read-& Amazon held their word-I got my replacement Kindle last week & it is working great! Great tv tonight which is always a good focus off pain point, as well as my books. There are times in my new life when thinking about the good, even if tiny actually does take my focus off pain for a small little while, & that's a massive help.

Housebound holidays

So often being a sick housebound person feels really tough when everyone is at the beach, at a cookout, or at a holiday party. Granted the holiday is about the men & women who serve with honor & bravery to keep us safe-& yet we all take advantage of the awesome sales & South Park marathons. Obviously we can balance both-but being stuck at home feels like any other day. I decided to treat myself a bit, & got 7 Nordic crime ebooks discounted hugely today. I let myself relax more & enjoy marathons, & try not to feel guilty that I'm not able to work or do the things most normal people do. I also really let the thought sink in that I could be a sick person stuck in another country where I have no rights-access to medical care or help. The thought of living my life without the huge advantages I have could be a much worse life.

 

My last day of the #HAWMC month challenge

Today, this last day of making up the missed days from this month, we are to find a picture on Flickr & connect it to our health focus. I'm cheating a bit...but let me explain. Last night I went out to take a picture of the super moon. After getting back upstairs & into my room, I started to fall. I caught myself & only fell halfway-ish, but the little slip ended up leaving me bruised, my toes bent backwards, & all of the force of it jamming into my pinched nerve. It hurt, & I woke up so very sore & tired today. I laid down on the heating pad which helped, had my iPad on Pandora radio (a channel based on instrumental music), read on my kindle, & played Words with Friends. I was in pain but I was content. I had the perfect position to have healing heat, music, a great book, & a good game going where I was actually keeping up. I fell asleep. Hours go by & I wake up. My body & back feel like I've been in a car wreck. I can't manage to get up for an hour. I take my morphine & wait for it to work, & I reflect back on today, with my moment of contentment.

 

 

Day 13 (ahhh Friday!) 10 things I can't live without WEGO #HAWMC

Ok, other than my parents who took me in after I got disabled & housebound, etc, here are some things that keep me GOING. Whether it is acts or material things, here is a how to ten for me...

1. My house rabbit, Chai. She is my little nurse. Jumps on my bed to check on me, jumps up & frolics often, & fills me with joy when I have none.

 

2. My iPod. When waiting at various doctor waiting rooms, blocking out everything & letting dad be my ears is crucial. Sitting in uncomfortable chairs & smelling the various scents of people & their vices-smoke, too much perfume...my brain's pain center goes into overdrive. Closing my eyes & turning up my music with my body folded into myself gets me through.

 

3. My iPad (no, I'm not an Apple spokesperson!) keeps me connected to the outside world. My Flickr pic project, blogging, Facebook, twitter, not to mention losing myself & trying to focus on games, Netflix, entertainment, etc. I count my blessed stars daily for this magic machine that isn't too heavy for my weak body to carry!

 

4. My cheap not smart cell phone camera. To not document this illness would mean the end of me.

 

5. My new baby Kindle. After not being able to hold books open & read, ebooks got me back to reading. I used to read 3-6 books a week, then one for 5 years. Since getting my kindle in mid-February I've read 3 books already!

6. Art. I do all of it through painting apps on my iPad as I can't stand the paint fumes or hold brushes, etc, I can paint again with oils, watercolors, etc. :)

 

7. As a vegetarian, I eat Amy's organic veggie/vegan meals once a day. Also Lean Cuisine veggie meals, & the veggie Kashi meals. They save me-I microwave them & as I can't stand for more than 3-5 mins I can sit & wait. I so miss cooking properly, but I count my blessings that these products are available. (no pic but Chai bunny's a veggie eater too!)

 

8. Little surprises...at times like this one, when looking down, crying, the blown glass light fixture reflected in my iPod at my neuro office, are always a little extra I live for...

 

9. Pills, from pain meds to magnesium to ice packs & heating pads. A necessary evil.

10. My doctors. They understand me-they know me-they honestly care. I don't know what I will do without them when we move. How will I ever find them again? My sadness at the thought.

 

 

Finished reading my 2nd book!

Thanks to my kindle & the ability to read again because of ridiculous 'handicaps' I've finished my 2nd book in many years. It was a far cry from my 1st, Agatha Christie, but every bit as wonderful. Being able to get lost in books again has been so fun. People lose & gain all sorts of things with any longterm illness, & among things like living with my parents, not being allowed to drive, not able to cook much, buy my own groceries, get a normal haircut, wear makeup, & a million other things-small & huge-they add up to a level of grief that's humbling & humiliating.

I finished the first book of The Hunger Games & loved it-yes I'm 41 but her struggles to survive resonated with me in a way that's hard to explain. I watch & now read a lot of gritty things, & a lot of that is because I try & take mental lessons on survival from each story. For some it might be depressing-for me it's training. This pic is a photograph put through 2 apps & I call it the Teardrop Nebula. I think Katniss from the Hunger Games would love it & hate it-hating the emotion of tears & being weak, loving the clouds & stars out hunting in District 12.

 

I'm now reading (& halfway through) The Snowman & a tiny bit through book one of Game of Thrones. One a cracked detective in Norway, & the other a magical mystical world of epic fantasy. They too will be on my survival training guides ;)

 

The stars in my eyes hope-ebooks save me

After getting my beloved little Kindle, I have bought & gotten free a ton of books, as well as checked out ebooks from our library. Knowing how much I want to finish The Hunger Games trilogy, start the Game of Thrones series, several Nordic thrillers, a WWII true account, etc it gives me the silent knowing that staying around will include all of these magical adventures, & help take my focus away from the pain.

 

 

Happy spiney valentines!

 This is a couple of days late...but wanted to share my valentines day. The night before my parents surprised me with a little, adorable, perfectly tiny Kindle as a combined early March birthday, Easter, & any other spring holiday you can think of-it's perfect for me, & I took it with me to my neuro appt on V-Day. I absolutely love it, & have already started a ton of new free books. ;)

It even let's me underline & write notes to my heart's content!

 

How ebooks helped bring me back to reading

 I will always love a physical book...the feel, the weight, the particular paper used, the smell, the cover art. After I got sick, I found the mere combination of holding a book open while reading was exhausting. After 7-8 pages I wouldn't be able to continue. I couldn't believe it-it sounds impossible to not be able to simply read. I used to read 3-5 books a week, & losing that was another of my great griefs of being chronically sick. After I got an iPad, I got the kindle app, & recently started checking out ebooks from the library & getting free or cheap books through the Amazon kindle store. I find that having black pages & white letters helps tremendously. 

Today, I finished my 1st book in 5 years. Although my joy is tempered by the tear stained pained eyes from what morphine can't cancel out, I still am so proud of myself. It sounds so pathetic, but going from reading 5 long novels a week to nothing in 5 years, well, I find my joy where I can. 

P.S. my book was 'Sleeping Murder', by the brilliant Agatha Christie-a Ms. Marple mystery

 

 

Epic kindle giveaway!

 A cool virtual shirt...& I got loads of free books, & now that I'm so extra sick, those books will help get me through the rough nights!

 

 

new year, new books, new headphones

I spent most of New Year's Eve watching a Big Bang Theory marathon, reading my new books that were free on Kindle or the 3 books I won from Mira Ink. As my headphones-the earbuds that are noise isolating...necessary for survival in my waiting room hours-broke last week, I used some Christmas money and got some new ones for under ten bucks. I wasn't expecting them to get here until after the new year, but a happy surprise hit when they arrived yesterday. They are fantastic-they really drown out the outside noise and amplify the music, movies, tv, etc. really well. 

I slept through the midnight mark-and woke up around 3:30 AM. I got up, read some, watched Netflix, and tried to forget that my last kiss was over 6 years ago. And it wasn't a good one. Ugh. All in all though with my last glass of champagne and new headphones and new books, it was pretty tops considering. Happy new year to all of you-wishing you laughter, peace, great snapshot moments, surprising little joys, and fun this new year. xxxooo