Oxygen Mask On, Head Firmly In Sand

When I was a freshman in high school, I knew I didn’t want children. I was told by other girls, and many adult women, that I would change my mind. the one woman who supported my fourteen year-old declaration was my aunt Prindle. I remember a heart-to-heart we had on my grandparents’s front steps in which she told me what a wonderful young woman I was becoming, and to always stick to my guns. I wavered over the kid thing at times, especially when I thought I was in love. Mostly, I felt a sense of duty to have children, knowing I’d be one of the good parents. I still know this to be true, but given my health issues over the last decade plus, and my active alcoholism before that, I know the decision not to have children was the right one.

Today, I am reminding myself of this often considered selfish decision after a mental break down. Not because of my mental pop, but because I needed a reminder that I do make good decisions for myself, for what might be considered selfish reasons.

I am sticking my head firmly in the sand.

I lived that way for many years and it suited me well, until it didn’t. I came to a point several years ago when I wanted to know what was going on in the world, finally giving in to that sense of not only civic duty, but humanist duty. I didn’t always handle it gracefully, like after the Aurora movie theatre shooting when I left my friend a sobbing message because she lived in Colorado and how was I to know she wasn’t at the theatre, nor even in the state that day? After that, as if I flipped a switch to off, shootings no longer dropped me to my knees. A callous had finally grown on my heart like on a stringed instrument player’s fingers, and I still don’t know if that’s a good thing.

That callous may prevent me from a breakdown with every shooting, but I have yet to harden my heart against what is happening to my country. And today I broke. Out of the blue. No warning. I’ve worked hard on my mental health in recent years and thought I was pretty well adjusted. I just picked up and moved to a new state for pity’s sake, I can do anything! Ha, right. Not this. I can’t do this.

Do what exactly?

cope. Okay, I suppose I did have some warning that I was on the verge of a break, the other day when the travel bans happened and it was too awful to believe and I felt so powerless to do anything and I projected my fear and disgust onto Facebook and those who voted for that man and then felt terrible for it.

the day my friend decided to work on sitting for the bar even though her own mental health is in question, because she knows lawyers are going to be needed, the day all the pain from around the world was projected on social media, that day should have been my warning, when I felt a sense of powerlessness so strong as to drop me to my knees, my powerlessness to do anything for my fellow human being.

I can handle it, I told myself. I need to know what’s going on, I told myself. It’s my duty as an American. I can handle checking the Associated Press every day. I’ll just cut back on what I read on social media. I’ll cut back on feeling all the pain, because as a damned empath, I feel the pain of others in my core.

And today I broke. No warning. Snap. Too much pressure on the rubber band. I didn’t shatter a coffee maker or throw a cell phone, I just decided I didn’t give a fuck and didn’t want to see what’s coming. I didn’t want my life to end, but I didn’t really want it to go on, either. I googled whether you can call a suicide hotline if you aren’t actively suicidal, just in so much pain that you don’t want to see what’s coming, and found the National Suicide Prevention Lifeline. I’ve retweeted that number countless times, never once imagining I’d be looking it up for myself. I still don’t know if I should call it.

I asked my friend Ricardo if he knew if one could call a suicide hotline even if they didn’t have a gun to their head, explaining that I didn’t want to keep the line busy in case someone who did have a gun to their head needed the line. Ricardo said my selflessness never ceases to amaze him. And here I berate myself daily for being self centered.

So I fed my dog and quietly told David I was taking my laptop to the bedroom to process some things emotionally and probably to break down so he might want to keep his son out of the room. I really didn’t mean for him to come inn, I just didn’t want his son to see me lose it. David came in after I closed the door and found me sobbing on the bed. He held me for awhile and as my tears soaked his fleece, I thought about all those couples the day JFK was assassinated. Is the sense of despair the same?

After my tears slowed and David got some Gatorade in me, I told him I thought I’d write a blog post and share my pain. Not to burden anyone with it, but because I know I’m not a lone. I know there are millions of us out there feeling the exact same way, and maybe there’s someone out there right now contemplating the gun in the closet or the liquor store up the street. For right now, I’m choosing my sober life. I hope you will, too. If you’re protecting sobriety that is. Hey, if you’re a normal drinker, will you drink one or twelve for me? thanks. and if you’re contemplating ending it all, please click that link above. I haven’t ruled out calling it myself, though I feel a little better after all this writing.

There’s a ten year-old playing his video game out there in the living room, as well as all those other children in this country and the world who need us adults to keep them as happy and safe as we can. In order for me to be there for him, I need to put the oxygen mask on myself first, and for right now, that means putting my head in the sand. Well, except when the ACLU emails me. I can avoid social media, but not email. I just wish I could do more for them than donate the money I don’t have. I’m a disabled woman. I’m one of the one’s they’re fighting for, I suppose. then my survivor’s guilt slips in. You don’t need fighting for. You’re blind, you have MS, and you’re white. You aren’t going to lose benefits (hopefully). Nothing is going to happen to you. I am a woman though, and it’s always been scary being a woman. So much more so now. Ugh.

I tried to find my usual cheery conclusion, but there isn’t one. Not today. This too shall pass. In four years.

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Filed under mental health, politics, sobriety, spoons, twitter me this

A Melancholy Joy

I jotted down those words on Christmas Eve because they so perfectly described how I was feeling, and the more I’ve thought about them, I’ve realized how they also sum up 2016 for me. This year has been absolutely life altering, both on a personal level and as an American. I did some travel in the early part of the year to see Josh Groban in concert, attend Rays spring training games, and visit with Florida friends. I returned home to get ready for a hysterectomy in the same month. I keep telling myself I should have feelings about now being barren, but I just don’t, ha! Not long after I recovered, My relationship ended and I fell in love again, and moved to Washington. Whoa, right? I watched Brexit unfolding on Twitter and prayed America would learn from Britain’s decision, and my hopes sank into fear and disbelief as my country elected, deep breath, I cannot write his name.

It’s hard for me to believe the turns my life has taken this year, some wonderful turns. I want to hate 2016 for all the awful, the terrorist attacks, the shootings, the steps backward in civil liberties, but I can’t help but love 2016 for what it has done for my mental health and writing. I completed the first draft of my memoir for National Novel Writing Month and am actively working on draft two. I took a fiction writing class and feel more in touch with my creative side than I remember being in a very long time. I have a file now rich with story ideas and character traits and observations. While working on draft two of the memoir, I’ve noticed how much I’ve learned about telling a story.

I thought that writing my own story would be easier than fiction. I know all the twists and turns, so it should be easy to write, right? Ha! Not only is it just as challenging to shape each sentence, it’s been taxing mentally to spend so much time in my past, especially during the holidays. That’s where the melancholy joy set in, when I received a Christmas card from my uncle and realized that I would not be getting one of his awesome hugs this year for the holidays or my birthday, the hug that he pours all his love and feeling into. I ran my fingers over the textured, glittery card as if it were braille and an ache grew in my chest and dissolved into tears. David and his son were putting up the tree, anticipation and excitement palpable, and my own joy at being here began warring with my sadness. Which one wins? The one you feed. I let the melancholy come, let myself feel it so it could pass, and moved on. I had a wonderful Christmas with my new family. David got me a soprano ukulele for my birthday, which was yesterday. I want so badly to play with it right now, but I promised myself I could have it as a reward if I worked on rewrites and posted a blog. Discipline baby!

So, 2016 comes to a close. I know many of us are ready to see the back of it. So much death this year. I won’t rehash it since we all know, we were all here, and we’ve all had our fair share of hardships along with worldwide hurt. I hope that 2017 will be better, I cling to that hope, though the pragmatist in me says, “hold on, darlin’. It’s only just begun.” I’ll focus on my art. I’ll work on making this book be the best it can be so I can share my silver linings and hope with the world. That’s my goal for 2017, to publish, yes, but most importantly, to continue to be a bright spot, continue to let my light shine. my goal is to make people smile, whether it be David or his family, a stranger on the street, a stranger on Twitter, or a reader of my blog and (hopefully) book. Let’s all strive for that, yeah? Let’s all hold on to our asses and protect those around us and love. All you need is love, right John Lennon?

Happy New Year! We can do it!

Ooooh now I can go play with my ukulele!

Here’s the first song to make its way into my memoir. It appeared during work on the second draft today.

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Filed under baseball, birthday, family, gratitude, mental health, music, twitter me this, writing

A Cardboard Box Tried To Eat Me

A webinar jinxed me. More specifically, a Can Do Multiple Sclerosis webinar. I found these webinars after David mentioned wanting some ideas for dinners (he’s a great cook), and I went searching for foods good for MS to add into our stir fries.. I certainly never meant to change his diet when I moved here, but he became intrigued with my management of cholesterol without medication, noticing that he felt better physically when he ate the stuff I eat. I have sworn off red meat, sadly. I feel like death warmed over after I eat it. Ah, the joys of getting older. Bye bye bacon.

Ro, I thought this post was about how a webinar jinxed you.

Ok yes, yes. So I listened to the latest one and it was about sleep and MS. These webinars are super informative, reinforcing a lot of the stuff I’ve learned about MS on my own over the years, either online or by adapting stuff to suit my needs. So a lot of it is sort of reeducation I suppose. the webinar mentioned often how important sleep is, which I think most of us know, but they brought up something interesting I hadn’t thought of, which is fall prevention. Of course, if we’re over tired or fatigued, we’re at a greater risk of falling. I’ve done pretty well avoiding falls, even with MS Induced vertigo and blindness. I don’t have a lot of problems with sleep, knock on wood, the biggest one being having a hard time getting back to sleep sometimes after I have to get up and answer nature’s call. They went through an awesome relaxation exercise, and recommended doing that during the night when insomnia hits. As if my body wanted me to practice, I couldn’t fall asleep right away that night after getting up, but unfortunately, I was too sleepy to have the energy to practice the relaxation exercise. Is this a chicken/egg issue? I put my current falling asleep audio book on under my pillow and eventually fell asleep to the dulcet tones of Alan Cumming reading Scott Westerfeld’s LEVIATHAN trilogy. I’m nearly done with the third book for the umpteenth time. I wonder what my next comfort, fall asleep listen will be.

I didn’t feel tired or unrefreshed when I woke up yesterday. We went about our usual lazy Sunday, and when I fed Jayden, I noticed that I’d need to empty dog food from the new bag into his food container. the box from Amazon had been sitting behind my desk for a week. I laid it flat, cut it open, and carried the thirty pound bag into the kitchen, leaving the open box on the floor.

David offered to pour the bag of food into the Vittles Vault but I assured him I’d been doing it for years and had a system, and I do, but after bending over, slowly filling the container to capacity, my back barked at me and I told David that ok, he could do it next time. We had a laugh over Jayden waiting for permission to snatch up the spilled kibble on the floor and I left the kitchen to return my scissors to my desk drawer.

Ok class, who remembers where I had opened the Amazon box containing a thirty pound bag of dog food?

Why do falls seem to happen in slow motion? Remembering it now, I can see myself walking as if in quick sand, my left foot encountering the box on the floor, my hands slowly coming up in front of me, scissors in the left one. I can hear my thoughts, how far am I from the computer? Shit, don’t break the computer, don’t fall into the desk with the computers, where’s Jayden, don’t want to fall on him, oh he’s in the kitchen ok falling falling falling.

the scissors didn’t enter my mind until after the fall was complete. Perhaps the part of my brain that controls my left hand was nice an alert, more so than the short term memory part at least.

I even swore in slow motion. David can vouch for that. He heard the whole thing from the kitchen and said I seemed to fall in steps. “Oh fuck…oh fuck….oh fuck!”

After I landed and took stock, realizing I had landed half inside the box, crushing the other half, I burst out laughing, imagining the scene in Ace Ventura: Pet Detective, where Jim Carey is snooping in the storage closet at the mental hospital and tries to hide in a box. He’s wearing a pink ballet tutu and high top shoes and ends up sprawling out of the box as it gives way around him. I couldn’t stop the hysteria. David came in and bent down to feel my position and after being certain I was ok, gave me a hand to get up. But I discovered that my left leg was folded into the box and I couldn’t stand, so I began laughing even harder and pulled his hand down to show him how I was trapped. He got my leg free and pulled me up and it was then that I noticed the scissors. That could have been very bad.

David asked if I was sure I was ok, because the laughter had sounded like a combination of mirth and pain. I took a physical inventory and sure enough, my left hip was not happy. Upon further reflection, I think the hysterical laughter was a bit of an emotional pop. It’s been a sad couple of months for David and his friends, since one of them has been dying. We received word yesterday that his friend had passed on. I never met him, but feeling the love and sadness from those who knew him, I knew he had been a special person. It’s an odd thing when a death watch is over. You’re filled with sadness with the knowledge that the person you love is dying and then when it’s over, there’s a sense of relief, and then guilt over feeling that relief. None of this was about me, but I felt David’s pain, and had for months, so I think I just sort of popped when I found myself trapped in a cardboard box. Emotions are powerful and strange things.

So, the webinar jinxed me. I obviously don’t believe that, but you know how when someone injures themselves in a really stupid way and their friends are like, you should say you got into a fight with a guy who wouldn’t give up his seat to a pregnant lady or something rather than admit you were playing Pokemon Go and ran into a tree.

Jayden Quirk

Sometimes after feeding and relieving Jayden, I get back into bed for awhile, and other times I get up and sit at my desk. Jayden always goes to his bed after he’s fed and relieved. We only have one dog bed, and we move it back and forth from the bedroom to the spot under my desk where he can be near me. Sometimes I forget to move the bed when I sit at my desk, and this morning, I was reading Twitter when I felt Jayden beside me. “Oh! You want your bed?” I went into the bedroom for it, Jayden trailing behind me. I put it under my desk and he curled up happily. It always warms my heart. It’s the simple things, everyone. Don’t forget to let the simple things make you happy.

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Filed under Amazon, Audio books, blind blunders, funnies, humor as coping skill, Jayden, jayden quirks, spoons, twitter me this

Let it snow! Let it um, snow…oh crap it’s gonna snow

Happy holidays, everyone! Whoa wait, what? Who am I and what have you done with Ro? Yeah yeah yeah, so I’m not all bah humbug this year, what can I say? something about being a part of a happy family with a child, in the cold, with the scent of a pine candle on a warmer next to my computer has made me embrace the holidays like I haven’t done since I was newly sober and life was shiny and new. Hmmm, shiny new life, happy with the holidays. coincidence? I think not.

Anyway, snow. The first time it snowed here a week ago, it felt magical. We woke up to everything covered in sparkling white, at least that’s how I imagined it. The kids had the day off thanks to the once monthly teacher planning day, and the sounds of happy children filled the air.

I put on the heavy winter coat I bought at Value Village over my normal layers, added a heavy crochet scarf (granny squares sewed together that was supposed to be a bed coverlet that I gave up on) and my new fur lined boots and went outside with Jayden. We walked up and down the street with the kids and I marveled at the feel and sound of crunching underfoot. David’s ten year-old kept brushing piles of snow off Jayden’s nose. the kids filled a wheelbarrow full of snow from people’s cars to build an ice fort in the front yard of the house across the street from David’s. There was so much joy!

Then I started feeling the cold and my scarf was getting kind of gross since I had it wrapped around my nose and mouth and did you know that cold makes your nose run?

When we stepped into the house, my body instantly began baking in my layers, my boots squeaking as snow melted and I realized my feet, and Jayden’s, were wet and tracking snow into the house. Not so magical, I thought.

I peeled off layers and dried our feet and settled in to drink coffee and read some Twitter while the kids played outside. When it was time for Jayden to have a pee, I bundled up, wrapped the scarf around my face, laced my feet into my boots, and went back outside to enjoy the snow again. David’s son came into the yard and pelted me with a snowball. It was on!

I picked up the nicely packed snowball and rubbed it up, imagining red stitches against the white, my fingers across four seams. I narrowed my eyes at the giggling child at the plate, wound up and let fly. It went way left and was most definitely a wild pitch. A runner on third would have scored easily. All the ten year-old’s snowballs hit me squarely. Hmmm, this isn’t fun like I remember it the few times it snowed in Tucson when I was sighted, I thought, as a kid, or as an adult at the pool hall when we scooped snow off of cars to throw at each other since it didn’t stick on the ground. That night had been the first time I’d driven in the snow,, and last, unbeknownst to me. It looked like warp speed on the Starship Enterprise as the flakes were caught in the beams of my headlights.

This time, there was no snowball fight with friends in a parking lot and no warp speed stars. the kids went off to a friend’s house and with no happy little voices frolicking around, just Jayden and me crunching around in the snow alone, we went inside to where it was warm and where David, accustomed to the Washington weather, waited with coffee and a hug.

The snow turned to ice after some lovely freezing rain and temperatures, and I got used to bundling up for the minute it takes Jayden to relieve himself. Apparently, this weather hasn’t been normal around these parts for quite some time, though more snow is coming. Just in time for the frigid air, a big box full of winter clothes arrived on my doorstep from a Rays fan friend in Florida. She’d lived in the Pacific Northwest for awhile, and those clothes were going unused, so now I have a variety of sweaters to choose from, rather than this Rays shirt, or that Rays tank top, with this Rays hoodie, or that one. She even sent a hooded wool coat. thanks, friend!

I think I’ll wrap this up and go make some chocolate peanut butter candy to see how the boys like it. I get to make Mom’s old favorite holiday sweets now that there are plenty of people to enjoy them.

Merry Christmas!

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Filed under baseball, coffeeholic, crochet, family, gratitude, holiday, Jayden, mom, num num food, relieving, sobriety, twitter me this, weather, working dog

I’m Home

It wasn’t a geographical in the AA sense of things, since I wasn’t running away from something, I was running to something. And I think I’ve found way more than I bargained for.

That was the thought running through my head this morning that made me run to my computer after refilling my coffee, knowing I needed to write a blog post. I got out of bed early today since I lay awake thinking of how close I was to finishing the first draft of the memoir – finally. I used NaNoWriMo this year to fully commit to the memoir. I studied memoir in October, reading “The Memoir Project” by Marion Roach. The book was recommended on Twitter by Josh Hanagarne @JoshHanagarne), author of “The World’s Strongest Librarian”, and I will be forever grateful to him for that recommendation. The book showed me how to structure the memoir and how to plan to write it. It showed me to find the message I wanted to convey, and that helped me narrow down which parts of my life were relevant.

What I have is a 50,550 (cool number, eh?) word sketch draft of this memoir, with the ending I imagined while doing my prep work.

I have a finished, first terrible draft of a book!

I’m pretty sure it’ll be longer than what I have now, because as I wrote, I would remember things that will need to go in, but I just jotted those down as notes to be added during rewrites. I’ll be learning Windows and Jaws *gulp* for the editing process, because the Mac and Voiceover is sorely lacking in the word processing department. Luckily, I’m in the right place with a Windows geek who can help me with that. Pray for him. *wink wink*

When last I posted, I listed all the challenges I’d been through with my benefits. I had planned to post again with fun stories about moving here, and I’ll still do that, but not in this post. Today I just wanted to post about finishing my first draft, because the feeling is incredible. I’ve finished multiple drafts of two short stories now, and those felt great, but finishing the first draft of this memoir, a book that’s been fighting to get out since way back when I had a Blogger blog, feels absolutely incredible.

I think it’s this move to Washington. It felt like home before I ever got here, and I’m so grateful it has felt more and more like home the longer I’ve been here. My creativity has grown in leaps and bounds here. I can stand outside in the front yard and just be, just listen and feel and smell. It’s so alive here! Everything is alive. Grass, trees, the nearby ocean that I smell when I step outside, everything is living, including me.

Without a doubt, I know this is home now. though I suppose we’ll see what I say in February, eh?

I’ve had to put some money down on warm stuff, but not much. I got thermal underwear on Amazon that I wear every day under my sweats and three tops, ha! David’s, and now my, friend took me to Value Village for a member’s only sale. This woman knows how to bargain hunt! I got two winter coats and a bunch of warm stuff to wear around the house. I’m currently wearing wool socks, thermal pants, sweats, a tight tank top, thermal shirt, fleece shirt, hoodie, NaNoWriMo beanie, and fingerless gloves. I’m pretty much warm, ha! I freaking love it!

It’s not so fun when it’s wet, but I’m getting used to it. The raincoat I bought for guide dog school hangs in the mud room, ready to grab to keep dry, and I’m waiting on a rain coat I ordered from GDB for Jayden. I certainly never expected to be buying a doggy raincoat. I never expected to move to Washington, either, so it just goes to show how unreliable expectations are. Tip: don’t have expectations, and prepare yourself for the unexpected.

Near the end of October, while I was preparing for NaNoWriMo and taking a fiction writing class, we met up with some of David’s family and went to the Hobuck beach at Neah Bay. David, his son, and cousins, all surfed. In the cold. I’ll be trying it in the summer if all goes as planned. Hey now, watch those expectations.

For Thanksgiving, we went to David’s parents’s house for salmon dinner. A lot of Salmon is eaten here, which is excellent, because salmon is a good anti-inflammatory food. Antiinflammation food? Hmmm. Anyway, we eat a lot of salmon and I love it.

There have been challenges. I’m still ironing out all the benefits stuff. It turns out that Medicare does follow you from state to state, but if you have a Medicare advantage plan like I had in Arizona, tying Medicaid and Medicare together with an insurance company like United Healthcare, you have to do more than just cancel your state’s Medicaid. Unbeknownst to me, my Medicare stuck to Arizona even after I cancelled Medicaid, and the only reason I found out was because when my new doctor tried to write a neurology referral, my new health group didn’t take my Arizona insurance, which I thought I had cancelled. Long story short, I had to call Medicare and get on a basic plan, and get on a prescription drug plan. As far as I understand it, everything should be straightened out on December 1, and I’ll officially be a Washingtonian, *knock on wood*.

I wasn’t planning on going into all that, but the fingers write what the fingers write. I have another call to make about my Medicaid, because I have a navigator woman with my medical group, who said I should not be on that ridiculous spend down thing. So fingers crossed she’s right.

So there’s another update for you, my one dear reader *cough* Torie *cough*. I’m thinking as I revise the memoir, maybe I’ll post things that end up on the cutting room floor. Though perhaps not until I know for sure. Better safe than sorry.

***Tip*** When taking your dog to the beach, no matter how short a leash you have him on, he’s still at risk for beach gut. Did you know that’s a thing? Yup, that’s a thing. My did Jayden get sick. Silver lining: I took him to the neighbor’s vet, which I really liked.

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Filed under accomplishment, coffeeholic, family, GDB, gratitude, holiday, Jaws, Jayden, Microsoft, num num food, twitter me this, vet visit, Voiceover, weather, writing

Moving State with a Disability

I’ve needed to write a post about moving and simply have not gotten around to it. Then this morning, it occurred to me how I can sum it all up with the aid of lists. So let’s see how this works. I’ll attempt to briefly sum up the reason for the move, and then add some lists. Ready? Here we go.

I’ll not give details, but B and I split up and tried to stay in the house in Tucson as roommates, since I didn’t exactly have easy options for moving out. Life tends to offer little choice when living on disability, as I’ve learned all too well. Our lease was up at the end of September, and we were going to go month-to-month while I figured out what I was going to do.

I had a plane ticket to Washington to test things out. Doctors have told me for years to move to a cooler climate, and it seemed as though the Universe were nudging me to finally act on that advice. I had met someone on an iPhone app called Vorail, which is a voice only social network. You can see why the blind flocked to it, ha! His name is David and we quickly formed an intense friendship. He came to Tucson in early July and we clicked.

So, August 15 was to be the start of a test here in Washington, but then it turned out that B and I would not be going month-to-month after the lease was up, so I had nothing to return to.

I packed everything up and put it into storage in Tucson and brought with me to Washington, three suitcases, a backpack, and Jayden.

Crazy right?

I could drone on about the travel day, but really there’s not much to say, other than I bawled my eyes out that morning after the movers came back and took my bed and my friend picked me up to drive me to the airport. Thanks Maritza, miss you! Leaving Tucson, the only city in which I’ve ever lived, for good? I didn’t yet know. Tears rolled down my face as the plane taxied and a man behind me told stories to his son about the things he saw out the window, how the airport had looked decades ago. I cried as I thought about my grandpa having been the accountant for the airport and how, at his retirement party, he was presented with two cakes made up to look like Alka-Seltzer tablets.

The roller coaster of emotion I had been on for months was taking another loop-the-loop. I was so excited to get here to David, to meet his nine year-old son, to see the house I’d heard so much of over vorail and FaceTime, to meet his family, to be near the ocean, but I was leaving my entire life behind. I was so grateful I had Jayden with me.

So that, in a nutshell, is the how and why I have been in Washington state for two months. Now for the lists of things I’ve experienced and learned that I think will be valuable for other disabled people contemplating a move to a different state. *Disclaimer: The following experiences have been my own and may not be the same for every state and/or every person with a disability.

Moving state when you live on disability

• Transferring your benefits is nerve wracking and scary, especially if you have a chronic condition like I do.

You can’t have benefits in two different states, but you’re limited as to how long you can be out of the state where you have current benefits. In other words, if you have an emergency situation, your hospital is covered by Medicare, but any medications are covered by your state, in my case AZ. I had a bout of diverticulitis after being here two weeks, Medicare covered my hospital but my medications weren’t covered. While I was recovering and sick from antibiotics, I was helping the hospital via the phone to get my AZ insurance stuff settled.

Rule of thumb: as far as I can tell Medicare is national and follows you. Medicaid is by state.

• Refill your medications before you go, and try to have more than a month on you.

Luckily, I was able to get three months of my meds before i left Tucson, all but my MS medication Gilenya. That’s been another scary thing, since I knew I’d be between insurance coverage. Luckily, I can get Gilenya straight from the pharma company temporarily until I get my insurance stuff settled, which is still a work in progress but will take a second post to explain. Maybe next Sunday ha!

• Do all this insurance research stuff before you leave your state.

I did not. Everything was happening so fast before I left Tucson, that figuring out benefits wasn’t high on my to do list. I thought, how different can it be? Mistake. Big mistake. Don’t assume anything. Medicare and your Social Security benefits are the only things that stay the same, but the majority of your day-to-day medical care, like doctors appointments, medications, and medical tests are covered by your new state’s Medicaid and those programs are vastly different. Luckily I now have Washington state benefits and the application process was much less of a headache than it was in Arizona, that’s for sure. But, their program is much, much more confusing than AZ.

* Be prepared for stress as you learn your new benefits plan.

Because I was honest about the chunk of my inheritance from Gamma I get every month, and because I can’t pay David rent lest his benefits get affected, I am not considered medically needy, which means I have a deductible of $3,400. Which resets every six months. I need to keep track of all my medical receipts and submit them to Medicaid every six months to prove I’ve met the deductible, or spend down as they call it. This means my Gilenya would need to be paid for out of pocket before the spend down is met. Thank God the Pharma company is helping, because I cannot miss a dose, and I don’t have $1,200 laying around every month.

• You’ll need a credit card.

I should say that all this is just one person’s experience, so don’t take what I write here as fact for everyone in every state with every disability. I could have done all this with no credit card, had I had plenty of time to get everything arranged, but I needed to put my stuff in storage and had no credit card. I don’t know what people do who don’t have a good support system, I really don’t. I’m also pretty scared about what’s going to happen with my medical stuff with no credit card and this spend down thing, but luckily there’s an agency here whose primary purpose is to help the disabled navigate the system. It’s called the Whatcom Alliance for Health Advancement (WAHA), and they helped me feel a little better about how I’m going to handle things.

• Take plenty of time to plan a move to a different state.

That’s my advice to anyone on benefits due to their disability. Give yourself plenty of time if possible. Moving is expensive for anyone, and when you have to worry about your benefits, the whole thing gets very overwhelming. Disabled housing takes years to get, so you’ll need to have a place to stay where you’re welcome for an extended period of time. If your temporary address is with another person on benefits, be aware that your presence might very much affect their benefits, which will affect yours since you won’t be considered to have shelter expenses.

Those bullet points are the things I can think of today that other folks on benefits might benefit (haha) from knowing before a big move. The most disheartening thing about all this has been feeling like I’m not supposed to fall in love with a blind guy. I’ve known that benefits are not family friendly, and now I really know it. I feel like, oh you’re disabled? Oh we forgot to tell you that you don’t have the freedom to pick up and move where you like, or to fall in love with who you like. I’ll be applying for disabled housing since combining incomes when you’re on benefits just does not work. How lovely.

and for Heaven’s sake, if you get a little extra from a family inheritance, be prepared for it to hinder more than help. Do I use it to buy the things I need for life in a cold climate that’s good for my health, or to pay my medical bills I’ll wrack up thanks to my health? My dad said, honesty is the best policy, unless it isn’t.

I wanted to end this post with more entertaining facts about my move, but I’m feeling rather mentally unstable today. Writing fun stuff would probably help, but I’m so tired after writing the frustrating stuff. I suppose this is motivation to write again soon, eh? I realized today that I’ve neglected the blog so much because I wasn’t living life. Now that I’ve moved, I’m living again! I know I was meant to move here, know it with all my being and I won’t let all the red tape kill my happiness. Not totally anyway. I need to have days like today to remind myself of how good I have it.

My next post will include pointers for moving from a hot climate to a cold one, and a story about a drone that nearly drove my dog insane.

***Parting thoughts: If your poop bag malfunctions first thing on Sunday morning, be prepared to have a shitty day.***

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Filed under accomplishment, family, fellowship, Gamma, gratitude, humor as coping skill, Jayden, transitioning

Link as Catalyst for Quick Post

Hello from Ro Land. This is just a quick post to say that a huge update, I mean HUGE, is needed here, but the catalyst for my posting this quickly is to share a link about five people who have made the best of their vision loss and found great careers. I was contacted here and given this link, and I always love positive stories about people deciding not to lay down and give up. So, please enjoy this article.

Speaking of people not giving up when they experience vision loss, have I got a story for you! Guess who’s not in Arizona right now? This girl!

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Filed under accomplishment, Adjustment to blindness, plugs, They landed here

Pants on Fire

“After my last post about accidental olive oil, I promised a friend I would write the story of setting my pants on fire. There was also interest in my brief mention of scissors in the fridge and milk on the counter after my Y2K party, so I’ll explain a little more about that, too.

At the end of March, I had an abdominal surgery. Just laparoscopic; I wasn’t cut open, but I did have four holes in my belly. I was given a belly binder thing, to help with pain relief. I lovingly referred to it as my girdle. who knew that it would also save me from bad burns, too?

I was putting chickpeas on to boil after soaking them over night, so my gas flame was on as high as it would go, and I was experimenting with adding fresh onion and garlic to the water to flavor the beans.

I was slicing fresh garlic directly into the pot, when I began to sniff the air, like a dog who caught a yummy scent on the breeze. Is something burning, I thought as I cut slice after slice into the water.

(I can hear all you cooks thinking, you’re supposed to mash fresh garlic, what are you doing slicing it?)

As I sniffed the air, trying to decide what was burning, I felt heat on my belly. I threw the rest of the garlic into the water, the knife onto the counter, and batted at my belly, burning my fingers in the process.

You know in books, when the protagonist tells you that time seemed to slow? That is absolutely, 100% true. Thinking back, it still seems like the whole experience took minutes, but I’m certain that the first sniff to the oh shit I’m on fire realization, only took a few seconds. Before I could think about it, I ran to the sink, flipped it on, picked up the sprayer and shot water at my belly.

After the fire was out and my fingers were only slightly prickling with pain, I inspected my pants. The drawstring had caught fire, the knot still tied, but the bow now split into four burnt strands. The embers at the end of those strands had managed to burn a whole in my shirt, as well as the pants. the only thing that saved me from a burn on my belly, was my post-surgical belly binder, my girdle, which had not a tactile mark on it. Do hospitals collaborate with NASA or something?

Lesson learned: do not cut the veggies over the pot of boiling water.

On the scissors in the fridge comment from my last post

Someone on Twitter said it sounded like one helluva party. It was a great party. I turned twenty-one the day before Y2K, so I used money I had gotten from Christmas and my birthday and stocked my dad’s fridge full of booze. I had informed him he would need to not be home as I was throwing a party. Looking back, I’m kinda surprised he was just like, okay. Um, thanks Dad?

I had taken a picture of my fridge before the party, showing off all the bottles of beer. I took pictures the next day, too. All the beer was gone, except for the case of Milwaukee’s Beast, I mean Best that someone had brought and no one drank. There, on the middle shelf, were the kitchen scissors. Across the kitchen from the fridge, the milk sat on the counter, gone warm. I don’t have any idea when or how this happened. Sighted readers, sorry but while I might still have said pictures in an old folder on my hard drive, I have no way of finding them.

Last thoughts

I see the doctor tomorrow to get my cholesterol results, so wish me luck!

Is there a cooking and/or healthy eating question you have, or do you want more blunder-type stories? Feel free to ask in the comments or on Twitter, since a combination of the two is how this post was born. I am revamping my blog. I got bored of writing all the book posts, and while I was seeing traffic on my stat counter, I wasn’t interacting with readers. I miss those days, so talk to me!

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Filed under new year, num num food, twitter me this

Accidental Olive Oil

A total lifestyle change can mean many things. It can mean no more drinking alcohol or caffeine, the cessation of smoking cigarettes, getting plenty of rest, adopting frequent exercise, or changing ones eating habits for the better. I’ve now done all of these. Except stopping caffeine. Coffee is my last vice. Nothing could make me give it up. Well, unless it threatened to kill me, I suppose. *Twitch*

Something I’ve learned about myself in my late thirties, is that I dearly enjoy living. In January after some physical symptoms I was having stumped my neurologist he sent me to my primary care physician, who decided to check my electrolyte and iron levels, and added a cholesterol test to my blood work as an afterthought. A few days later, I received a letter informing me that my cholesterol was high and my doctor recommended meds. I had a decision to make. I did not want more medication.

High cholesterol was most likely not what caused the symptoms I was having in December. My PCP narrowed it down to seasonal changes and needing more water. the more water thing flummoxed me since, other than black coffee, water is all I drink. But, turned out I needed more. I’m grateful my doctor added that last minute cholesterol test that day. She’s thorough like that and that’s why I love her.

When I received that letter, I made an appointment with her to discuss my options.. I wallowed for a week, eating everything I knew was bad, and then I hit the internet and taught myself about cholesterol and how to lower it with diet. I decided I would do it naturally because I did not want more medication. I’m on enough, thank you very much.

What I learned was that everything converts to fat. Duh, right? But that there are good fats and bad fats and hiding fats and hiding sugar which converts to fat and packaging labels lie and cholesterol raising ingredients are everywhere and man, it’s a dangerous world.

So basically, if I wanted to stay away from more medication, I would need to prepare all my food from scratch. Well, I told myself, here’s the push you need to finally begin preparing your own food.

I’d known for awhile that this had to happen, that the way I was eating was terribly unhealthy, like Frozen dinners (even those referring to choices that are healthy or cuisines that are lean) or fast food burgers that B picked up on the way home from work,yum. I would try and order the healthier items when we’d do take-out from restaurants, *cough* labels lie, but I was fooling myself, desiring the easy way out.

You know that phrase, nothing worth doing is easy?

In the weeks leading up to my doctor appointment, I began eating foods I prepared. I had a left over box of pasta in the cabinet so I would sauté fresh veggies and toss them with olive oil and pasta. I changed my frosted mini wheats for Quaker Old Fashioned Oats. None of that quick, packaged stuff with the yummy fruit. Remember those hidden sugars? Nothing processed for me, baby. I switched to 1% milk for my oatmeal and added raisins and honey. I made fruit salads with apples and grapes in non-fat, plain Greek yogurt for lunch. When I went back to my doctor I had lost seven pounds in two weeks.

I told her all the dietary changes I had made. I explained about exercising on week days. She congratulated me on the weight loss and said what I was doing was working. No pasta though. That converts to sugar which converts to fat and up goes your cholesterol. She said I could have a side of pasta sometimes. Who wants to put in the work of boiling pasta for a side dish though? Not this girl. I finished the box of pasta and bought no more.

My doctor was concerned that nothing I had mentioned included protein, so I added chicken to my list of things to learn to cook as well as beans. I now make hummus from scratch. I make it so from scratch in fact, that I buy five pound bags of raw chickpeas, soak them, and boil them. I want to know exactly what is in my food. I don’t trust those lying labels any more than I trust a lot of lawyers. This is my health, and if I’m going so far as to not take a drug that many people take and trust, I’m going to be serious about lowering my cholesterol another way.

*Cough* Except for dinner on weekends. Hey, a girl needs french fries sometimes.

Is this where olive oil comes in? Not yet. Well sort of. We are at the part of the post that involves olive oil, yes. Just not french fries.

Another thing I’ve changed about my life, is the addition of podcasts. I read something somewhere about podcasts being an excellent source for story ideas and examples of dialogue. That was my intention when I began listening to podcasts, to jot down dialogue ticks from listening to real people speak, and to add to my well of ideas. Who knew that learning more about the world would be so rewarding? That has been a welcome side effect.

My weekday routine now includes listening to NPR’s Fresh Air every morning while I prepare and eat my oatmeal, make the bed, and clean my teeth. Yesterday, I had to fast before going to get my blood drawn. It was the first check of my cholesterol since the lifestyle change. I’ll get the results next week. Hash tag fingers crossed. (I wrote out the words hash tag because I’ve taken to saying them when I speak, in case you were wondering, which you probably weren’t.)

Since I didn’t eat my oatmeal for breakfast yesterday, I didn’t listen to Fresh Air, so I listened to it today while I prepared my oatmeal. Every day while it’s cooking I grind beans for a cup of coffee and grab my agave nectar, almonds, and Greek yogurt. I cook raisins in with the oatmeal so they’re nice and plump, and doctor the mixture when it’s done nuking.

When I pulled the yogurt out of the fridge, the container felt as though there were liquid in it. I knew I was running low since tomorrow is grocery day, and sometimes yogurt gets a bit liquidy. (My Mac is telling me that liquidy is not a word, but on my blog, it is.)

the microwave beeped and, like always, I added a spoon full of yogurt to the hot oats. My attention was drawn away from the episode of fresh air when the spoon didn’t feel nearly as heavy as it usually does when full of Greek yogurt. I shrugged and tipped the spoon over the bowl.

It was then that I thought about the old Greek yogurt container in which I keep my olive oil, in the cabinet. I keep my oil this way so that I can ladle it out with my aluminum measuring spoons, bent in such a way that they are miniature ladles. I was taught this technique by a rehab counselor when i was newly blind. I’d pour my liquids into a cup, ladle the needed amount with the measuring spoon, then use a funnel to pour the liquid back into its container. Oil is such a mess though, that I simply keep it in a yogurt container I can easily ladle out of. I keep salt in an old butter container. Cinnamon, too. Just level off with the flat edge of a butter knife.

Luckily only one spoonful of olive oil made it into my oatmeal. I added my two spoonfuls of Greek yogurt and a handful of almonds, stirred it all up, and prayed. I could taste the olive oil, but just barely. I bet anyone who didn’t know it was there, wouldn’t taste it. I thought hmmm, if I ever need to add even more olive oil to my diet than I already eat, I can just add a spoonful to my oatmeal.

How the olive oil got into the refrigerator right in front of where I keep the Greek yogurt, I’ll never know. It’s kinda like the day after my Y2K party, when I found the milk on the counter, and the scissors in the fridge. Only these days, I’m completely sober.

If I have any readers left after my unintentional hiatus, tell me, should I tell the story of setting my pants on fire while cooking chickpeas?

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Filed under blind blunders, blind tips, coffeeholic, doc, gratitude, humor as coping skill, num num food

Ro Goes to florida 2016

So, back in 2014, the Tampa Bay Rays family on Twitter decided it was going to get me to St. Petersburg for the opening series of the season. This involved fundraising via Paypal to raise the money for my flights and hotel, as well as game tickets and food. The Rays got wind of this and donated a suite for three games, so tickets were covered. Sweet! the rest of the trip was completely funded by cash donations. How freaking cool is that? All those strangers new how much I love the team, and that since I was on a fixed income thanks to my disabilities, I’d never be able to afford to attend games in St. Petersburg at Tropicana Field. So they made it happen. You can read about the donations and stuff here, and about the trip through the #RoToTrop category on my blog.

Just before the idea for that trip came to fruition, I fell in love with singer Josh Groban, @JoshGroban thanks to William Shatner, @WilliamShatner, constantly tweeting a love fest about the guy. I looked Josh Groban up on iTunes one night out of annoyance at Shatner and his man crush, and holy wow OMG Josh Groban wow oh this music holy crap let me just buy this album and that one and that one and I followed him on twitter and stalked him er I mean his timeline and fell absolutely and totally head over heals in love. He’s pretty much the only one on my freebie card now, though, unlike Ross Gellar’s, mine is not laminated.

Ok so what do my trip to Florida to see the Rays back in ’14, and my slight obsession with Josh Groban have to do with one another?

My friend Professor Twain, @PRTwain tweeted me one day last year to inform me that my Josh, I mean, that Josh Groban will be performing in Clearwater, FL on March 1, right as the Rays begin Spring Training.

A plan was born.

A generous Rays family member donated frequent flyer miles. My flights are booked.

Another generous Rays family member donated hotel points in clearwater. Those hotel nights are booked.

Another generous Rays family member donated hotel points for my stay in Port Charlotte for spring training games. those nights are booked.

another generous Rays family member donated two concert tickets for me to see my Josh groban, dangit, for me to see, ahem, Josh Groban on March 1.

pardon me while I scream.

All that was taken care of within two days of us announcing the trip on Twitter. Two days. It’s amazing how much happens when so many people love a person. I still, even after that first trip, am astounded that the person all these people love is me.

thank you. thank you, a thousand times thank you. My friends and followers know my life isn’t a cake walk but, though I’m blind, I always see the silver linings. These people are such a radiant silver lining, they shine like the brightest of stars.

We’re still raising money via my Paypal page using my email, raynaadi @ gmail . com

We raised enough that first day for me to be able to reimburse the person who donated hotel points, but who had to pay cash for the last night since he was out of points. That’s quite a bit of money. So amazing right? A Rays family member bought two seats each at two games in Port Charlotte and one in Ft. Myers, just in case they sold out. I’m hoping to be able to reimburse this person with further donations.

*Squeak* Josh Groban just shuffled in, singing Bring Him Home from Les Miserables and I get to hear him sing it in person! OH MY!

Anyway, so we raised $270 right after we announced the trip and I reimbursed #200 of that, so my current donations tally is $70.

I’d like to reimburse monies for the game tickets, which totaled $210,and cash for meals, checked baggage and tips for airport assistants would help. Did you know people at airports who assist the disabled work on tips?

Itinerary and Logistics

I’ll be flying from tucson to Tampa on Monday, February 29. When i told my friend yesterday that I feel like flying on leap year day might make me end up in an alternate dimension, he accused me of reading too much. guilty as charged. I’ve got a ride from the airport to the hotel covered.

Tuesday, March 1 – I’ll have time for visiting in the Tampa area before the Josh Groban concert. We’ve kicked around the idea on Twitter to have lunch at Evan Longoria’s restaurant, Ducky’s. I figure that would be a great place to congregate and hang out. March 1 is the only time I’ll have available in the Tampa St. Pete area. Transportation is needed.

Wednesday, March 2 – It’s down to Port Charlotte and the Rays spring training facility. Woo! I’ve got that trip covered. Who’s going to the game? It’s Nationals at Rays at 1pm. Let’s meet up! Maybe dinner after?

Thursday, March 3 – Baltimore at Rays 1pm. this game is not covered. I’m staying in Port Charlotte, so I just need a buddy to attend the game with, maybe grab dinner, and a ride back to the hotel.

Friday, March 4 – Rays at Boston in Fort Myers at 1pm. This game is also not covered. I’ll need a ride from Port Charlotte and back.

Saturday, March 5 – Rays at Baltimore in Sarasota at 7pm. This game is covered. Who else is going?

Sunday, March 6 – I fly back home. Awww. I need a ride from Port Charlotte to the Tampa Airport. My flight leaves at 4pm so I should probably be at the airport between 2pm and 2:30pm. ***This ride is covered as of a few hours of posting this!***

So, there it is. If you’re interested in helping with transportation, contact me on Twitter@Raynaadi. Any vehicle I ride in must have air conditioning. I swear I’m not picky, but my MS makes me sick if I get over heated. I will also have my yellow lab guide dog with me and he’s trained to ride in the foot well of the front passenger seat between my feet. If you don’t want a dog in your car, it’s probably best not to volunteer for transportation. Also, I’ll only get in the car with people I’ve talked with on Twitter, and who others I know have met in person at games. Lastly, I won’t get in a vehicle if the driver has had any alcohol. It’s not just me i’ve gotta worry about, but my guide dog too.

We can do this, right? I’m so excited and grateful! Wow!

I’ll update this post with the donations tally as well as keep track of transportation volunteers. I can’t wait to hang out with my florida family again!

~*Meeting the person who started it all*~

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Filed under baseball, evan longoria, family, fellowship, gratitude, Jayden, leap year, music, spoons, twitter me this, wow