Category Archives: humor as coping skill

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

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

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

December’s Audio Books Et Cetera

I’m fighting a migraine and it’s my birthday (12/30) as I write this and I’m waiting for my requested birthday dinner of 5 Guys, Burgers and Fries but my stomach is a little queasy from the migraine so no fair. December has not been kind to me. I’ve got a mystery bug that sent me in a panic to the neurologist after I almost passed out on stage while singing in the Tucson Girls Chorus 30th Anniversary concert. I thought for sure my MS was in one hell of a relapse but my MRI was clean, so the neuro tested me for an evil virus which I was sure I was dying from but that came back negative so the neuro sent me to my primary care doc and turned the mystery over to her. I see her next month. the neuro thinks I’ve got a bug that’s exacerbating normal MS symptoms like fatigue and dizziness. I get super breathless and light headed with the slightest of elevation changes. I’ll have a day of feeling better and then the next day I’m back to square one. Sitting in a normal chair is difficult since I feel like I’m going to topple out of it. I worked on my novel in the first part of the month after taking a week to recover from NaNoWriMo, then this bug hit and I’ve been useless. That’s about all I’m going to say on that right now since I’m fighting a depression that would love to grab hold while I’m weak so let’s move on to books, shall we? Oh, I checked my stat counter today to give me the motivation to care about this post and you’re still reading, so I’ll keep writing. comment sometimes, will ya? I’m fragile. tee hee. A ear end book recap/top ten list is coming at the beginning of next year.

*Seven books this month*

106. “The Twelve: A Novel” (The Passage Trilogy book 2) by Justin Cronin – narrated by Scott Brick

finished December 31

Ok so I really don’t think I’ll be finished with this on December 31 but it’ll be damn close and it’s a long book, as was the first book in this trilogy, so I’m counting it since I’m over half finished as of today, the 30th. Book two has been so much better than book one, which was good but very draggy. Lots of blood. Lots and lots of blood. Not quite your typical post apocalyptic. The third book is out next year and I’ll definitely read it to see how the trilogy concludes. And, Scott Brick. Need I say more?

Ok now I’m writing this on December 31 and last night the book started having an X-Files feel. Oooooh! Government conspiracy in the apocalypse? yes please!

Ok so it’s December 31 and I’ll be finishing this book tonight. I haven’t been able to put it down all day.

@jccronin

105. “The Passage” (The Passage Trilogy book 1) by Justin Cronin – narrated by Scott Brick, link Adenrele Ojo and link Abby Craden

Finished December 26

After I tied Ricardo up and made him read my favorite zombie trilogy back-to-back, he told me about this series, narrated by Scott Brick so I decided to read it since it’s Scott Brick and I kinda felt bad for abusively forcing Ricardo into that zombie series even though he did like it.

‘passage’ was good but after the first part, I was very angry and I can’t say why because spoilers but the book redeemed itself and I stopped being angry. Ricardo said he liked the second book better and I have to agree. This book was super laggy with navel gazing, a publishing term I just learned from my friend Lauren which means talking about stuff that doesn’t matter. On and on some passages (hey, passages, the Passage har har) went. Just get on with it, I thought often. It was a good book though. Very reminiscent of Stephen King’s “The Stand” but with a lot more blood. A lot.

The two female narrators read brief segments, the second of which being diary entries. As a warning to the listener, Scott Brick interrupts the second woman with things like, missing pages or illegible, and it made me jump to hear his voice suddenly haha.

good book, but there were times I wanted to skip through or just stop reading all together. Be patient, and I don’t think you’ll be sorry if you like bloody post apocalyptic thrillers.

104. “Daughter of Smoke and Bone” (Daughter of Smoke and Bone book 1) by Laini Taylor – narrated by Khristine Hvam

Finished December 17

I put off reading the Justin Cronin books because my friend Lauren wanted me to read this with her and would you believe it, she kept stopping reading it? I mean, my goodness. She’s reading it again now though which is good since I can’t wait to talk about it.

This book reminded me a lot of Diana Rowland’s kara Gillian series, but for young adults. It has an awesome fantasy element, angels and demons in an urban setting, with portals into other places. Oh and the protagonist has bright blue hair and tattoos. What’s not to love? the writing is absolutely exquisite, with passages that made my breath catch in my chest they were so hauntingly beautiful. then in the next breath, the characters would do something funny. It’s the perfect balance of beauty, humor, magic, world building and character development. I can’t wait for the next two books, which I bought with iTunes gift cards my uncle and aunt gave me for Christmas and my birthday. Weee!

Just wait until you find out what the wishbone is for…oh and the teeth…

This book is the closest to my novel that I’ve read since I began writing it back in November, well except for the achingly beautiful prose which mine doesn’t have yet in this first draft. Muahhaha!

@lainitaylor

103. “Champion” (Legend book 3) by Marie Lu – narrated by Steven Kaplan and Mariel Stern

Finished December 14

What an excellent trilogy! Bleak dystopia, heart breaking romance, awesome narration and the most epic fighter jet scene I think I’ve ever read in a book. Highly, highly recommend this trilogy if you like YA.

102. “Prodigy” (Legend book 2) by Marie Lu – narrated by Steven Kaplan and Mariel Stern

Finished December 10

Wait, the epic fighter jet scene, that was in this book, not book three. Why, why do I not write stuff about these books right as I finish them? I seem to remember at least jotting down notes. My brain this month, blame my brain.

I think all I’ve got is so good, go read, so good haha. click the links I provide to Audible and read about the books there, what do you think I am, a publisher’s summary blog? Haha! Ok I think I need dinner. Loopy much? Books? What? Oh right, books. I think the first book in this trilogy is in November’s book post.

101. “Kill Shot” (Icarus book 1) by Aria Michaels – narrated by Rhiannon Angell

finished December 9

This was a daily deal and I wish Kate Rudd had narrated. It screamed for her voice. the narrator was ok but there were two characters she did super high pitched that made my brain throb.

It was an entertaining read, though several times i found myself thinking, was this book self published? There was a glaring error of continuity at one point, where these teenagers are hunkered down in the basement of the high school after this solar flare causes all hell to break loose, and they’re in the basement for days. When the protagonist has to venture out she thinks to herself how different everything looks from when they walked to school that morning. *record scratching sound* Nooooo, back up and read what you wrote. Didn’t realize they’d be in the basement that long or something?

turns out the novel was self published. the reviews on the book are from people who were asked to review the book by the narrator. It all makes sense. I’ve got nothing against self publishing, but I’d like to see this book and the sequel get a traditional publisher and professional editors. Just a good polishing and this book would shine.

Ooooh, I did jot a one word note on this book: anyways. The characters kept saying it and that word is one of my pet peeves. Also, everyone kept saying the protagonist’s name. How are you feeling, name? How’s the weather, name? Name, what should we do now? And not her full name. Her nickname. It got so old! I still enjoyed the book though; I can’t lie.

@AriaMichaelsYA

100. “A Dangerous Fortune” by Ken Follett – narrated by Michael Page

Finished December 5

Ken Follett at his best, wow. This was such a good book. This book takes us into the inner workings of the banking world of the late 1800’s. It shows what happens when families have too much power and will do anything, anything, to keep it. Ricardo recommended this book and I could not put it down. Excellent!

***

Happy New Year and happy wedding day to Evan Longoria!

@Evan3Longoria Anyone who says they weren’t nervous on their wedding day is a liar! It’s a great kind of nervous! Excited to see my bride @jaimeedmondson. from Twitter for iPhone Dec 31, 2015, 12:07:17 PM

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Filed under 2015 Monthly Audio Book Lists, Audio books, birthday, Choir, doc, evan longoria, family, gratitude, humor as coping skill, iTunes, new year, rambles, spoons, twitter me this, writing

Even in my morning desire to rage, I didn’t have the urge to smash it like a bullpen phone.

Welcome to another episode oF *CROWD CHANTS THE WORDS* SLEEP! DEPRIVED! FUN! WITH YOUR HOST, RO, THE RAYS DUCHESS OF THE ARIZONA TERRITORIES!

I HAVE THE TIARA TO PROVE IT.

NO REALLY, I DO. I WAS SERIOUSLY TEMPTED TO WEAR IT TO MY LAST STEROID TREATMENT YESTERDAY. I HADN’T HAD THE ENERGY TO BATHE THE DAY BEFORE AND BLOW OUT MY HAIR SO I STUCK MY RAYS CAP ON YESTERDAY AND ALMOST PUT THE TIARA ON OVER IT. I THINK I HAVE EXPERIENCED A LITTLE OF WHAT IT’S LIKE TO BE IN A MANIC PHASE. I MENTIONED IN YESTERDAY’S POST THAT I LISTENED TO THAT GNARLES BARKLEY SONG CRAZY ALL THE WAY TO THE HOSPITAL. JUST ON REPEAT. THE DRIVER WAS A SPEED RACER TOO, SO IT WAS A SERIOUSLY FUN RIDE TO THE HOSPITAL. I KINDA WISH I HAD WORN THE TIARA.

Davis just informed me on Twitter that I was yelling. I hate it when I knock caps lock on and don’t notice it. Was I yelling in this post? Well, it would fit. I’m feeling crazy again this morning as the hours tick by. I don’t know for sure when I woke up. I try not to check the time so I don’t obsess but then I needed an ibuprofin and I always note the time when I take one since I take the 600mg pill and I don’t want to overload my kidneys. When I checked the time it was 3:00am and I had been laying awake for quite awhile. *groan*

So I lay there some more and then just gave up and got out of bed. I ended up reading through all my short stories here when I grabbed the link to the archives page to send to my new neuropathic friend. (His title. I like it.)

My writing schedule has been killed these last two weeks with all the medical stuff that came up so suddenly. I don’t know how I’ve managed to get a post up every day for NaBloPoMo. I’m sure the last few don’t make much sense. At least this morning I’m co-hearing ok that’s me trying to use Dictate on the Mac to spell a word and it’s just not working. Coherent There we go! Oh, it’s ent not ant.

Did I already write that I see the neurologist today? Maybe I’m not coherent if I already forgot what I’ve written. I’ve mentioned it on Twitter so that might be where I wrote it. this is why I shut Twitter down when I’m working on the novel haha.

It’s only 5:12. My alarm is going off in just under two hours. At least it’s not a three hour infusion today with travel to and from the hospital mixed in. I’m hoping to talk to my friend Shupa this afternoon after I get home. I’ve been drawing on her strength the last few days without her knowing it. Sometimes you just reach out through the ether to people who understand what you’ve going through.

I can’t quite seem to get silly like I have in past sleep deprived posts. Hmmm.

You know what sucks? Steroids. usually they’re awesome. this go round? Not so much. usually they increase your apetitie. Oh God I can’t type that word hahaha. Apetitie. What? Ok is a brain lesion effecting my finger nerves? Appetite. Ok had to type it super slow. Anyway, usually food is awesome right? I love food. And in the past on steroids when the hunger would hit and it hits fast, it was fun to wolf down food and appease the hunger monster. I mean it comes on FAST. It’s like, you better feed me now bitch, or there’ll be hell to pay. but yesterday? Hunger hit, had to eat but the thought of food was disgusting. I had my usual lunch at about 3pm after I got home and had to clean up cat mess and it was like forcing down my turkey and radish sandwich that I usually love. Then I went and got a light massage, therapist going easy on me just to help relax the muscles but not exacerbate anything. I had told B before my massage that I had no idea what I might want to eat after so I’d just make PB & J. I mean one can always eat PB & J right?

When I got home I decided I wouldn’t eat. But then the hunger hit and there was no choice. I had to force down that PB & J. I am not enjoying this.

My vertigo is pretty bad. I think if my eyes worked, I’d be noticing some vision issues. It’s hard to explain what I feel since I can’t see, but I feel my eyes trying to do something. It reminds me of the nystagmus I had as a kid. That’s where your eyes vibrate. It used to happen to me at night when I turned the lights out to sleep. I’d have to turn the bedside light on and stare at it to make my eyes stop vibrating. That’s almost how they feel now.

So I don’t know how much success the steroids were. I don’t know if the doc will order another MRI. Several have asked me that. I didn’t have a second MRI in the past after steroids, but that was after being treated at the hospital, so who knows what Dr. v will want. I’m looking forward to this week being over but I am grateful I see him today.

I’m just plopping my hat on today. Don’t worry, I won’t put the tiara on. I am becoming one of those people who goes out with hair overdo for a wash. Nooooooo!!!! I just have not had the energy to shower after treatment this week and I can’t do it in the mornings because bathing takes all my energy. So…body spray it is! I hope I don’t stink. I don’t think I do. I haven’t sweat. It’s been really beautiful here weather wise.

So I’m just sitting here drinking coffee, flipping over to Twitter and carrying on conversations. The heater is on. the air from the vent in my den is so loud I have to adjust the volume of my screen reader when it turns off and on .

Oh no, the hunger wolf is prowling. I’d really rather have breakfast close to the time I’ll be leaving to my appointment but when this wolf gets hungry, it gets really hard to ignore, like a dog who is demanding attention. I think I only have one more bowl of Special K left in the box. *sob*

I’m going to get some green tea later with my prescription. My massage therapist said green tea is good to help the body adjust after high doses of steroids. I didn’t ask how he knows that. Maybe I should see if I can get ARod on the line for his tips. Bah ha ha! I assure you my phone is safe from harm. Even in my morning desire to rage, I didn’t have the urge to smash it like a bullpen phone.

Dammit hungry. Maybe I can manage a slice of bread with some peanut butter. Hmmm. Yeah that sounds good. I’ll go try and eat that and report back.

Ok, that was pretty tasty. I stuck a half a banana on there. Jayden was happy with this development. A taste of peanut butter and a half a banana? Nom.

Only problem is I forgot to take a Zantac this morning. Steroid heartburn sucks. Just popped one so hopefully it’s not too late.

I think I’m done rambling about nothing. I’m getting sleepy. Go figured. Three hours till I leave for the doctor. Tick Tock.

Today’s song of the day:

I really like how WordPress handles youtube videos now. Just plop the link in and WP does the rest.

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Filed under coffeeholic, doc, gratitude, humor as coping skill, iPhone, Jayden, mental health, NaBloPoMo 2014, num num food, rambles, random stuff, screen reader, silly girl, Sleep Deprived Fun, spoons, twitter me this, weather, youtube

Take your Benadryl with your Solumedrol so you won’t go quite as craaaaaazy

So if any patient with MS stumbles across the post and you are about to go in for a solumedrol infusion, when you arrive for your treatment the nurses might hand you some Tylenol and Benedryl and you might wonder what it’s for and the nurses will tell you it’s what the doctor ordered but you can refuse it if you want.

If you’re like me, you’re probably going in for Solumedrol because your MS is flairing up a bit and you’re probably sick and tired of being sick and tired and you know the steroids are going to bring relif from your body aches and give you more energy than you’ve had in forever so the thought of taking Benedryl is abhorrant because everyone knows that crap knocks you out right?

Sorry this thing is full of typos. I just got done with four days of going into an infusion center for meds and I came home to cat shit all over my bed. Do you know how not fun that is to clean up when you’re blind?

Anyway, trust me on this, dear MS patient. Take the Benedruyl. The doc probably ordered two, you ccan try just one, today I took both because yesterday, during my third day of treatment, I got anxiety so bad they kept having to stop the infusion.

Steroids can make you crazy. They didn’t for me the first two times I had them but those were times of deep stress and duress. This time I went in relatively healthy expect for the MS flairing up so the steroids did number on my mental health. I’ve also got an anxiety disorder now that I take daily Lexapro for so the general consensus is that the steroids flaired up my anxiety bad.

This morning I was so nuts I felt like Carrie from homeland. I asked my mental health professional boyfriend is this what’ it’s like to be bipolar because yesterday I just wanted to sleep and this morning I was weepy and wanting to walk around raging.

I took the Benedryl today. both of them. And I zoned out, mildly sedated, listening to Josh Groban while the Solumedrol infused. I still feel sluggish now but it’s far better than raging, let me tell you.

I’m done now. I see the neurologist tomorrow and I’ll probably get a prednisone pill to taper off at home. Oh, pick up some Zantac too. Take on in the morning before your breakfast, and eat something for breakfast before you get your infusion. Take another Zantac before dinner. Trust me, steroid heartburn SUCKS.

Ok, that’s it. I harte that this crap has happened during the NaBloPoMo because the last thing i’ve wanted to worry about it posting every day but dammit, I must hahaha. O crap I’m feeling crazy again. I listned to that Gnarles Barkley song all thwe way to treatment this morning.

Let’s see if WordPress embedded that.

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Filed under cats, humor as coping skill, Jayden, mental health, NaBloPoMo 2014, spoons, youtube

“White Trash Zombie Apocalypse” by Diana Rowland – narrated by Allison McLemore

Hi School Zombie Apocalypse!! Two exclamation points, don’t forget the two exclamation points. I imagine this movie like a Sharknado with zombies. Hmmm, Zombnado?

Wait, is this a post about a movie?

Well it’s a movie in the book, yes. A zombie moving is being filmed in Angel Crawford’s home town and she can’t help but enjoy watching the fake zombies shamble around, that is until they are no longer fake zombies but real zombies after her. Oh yeah, and she has to take the GED test thanks to her probation and the stupid rain just won’t stop.

Turns out a lot of rain in Louisiana is a very bad thing.

There was a scene in this one that had me in tears and when I told Diana Rowland that on Twitter, she was very happy. Pssst, it’s us writer’s goal to make you cry.

There’s only one more WTZ book to review this year. I love these books! Hey, got any pudding?

Rating: So good!

“White Trash Zombie Apocalypse” at Audible

My schedule next week for my steroid treatments isn’t yet confirmed and that’s kind of bothering me. Dr. V’s MA said I’d hear from the hospital but I haven’t yet. I called the MA today and left a message just following up since it’s the end of the week tomorrow and I’m supposed to start treatment on Monday. I don’t know about you, but when I need treatment to calm my brain lesions down, I kinda want to know it’s scheduled good to go, you know?

I had a woman come today and clean my house. That was very very weird. When we moved in here I had to admit to myself that I didn’t have the energy to give it the good deep cleaning it needs. It was clean when we moved in obviously, and while I had hoped to just keep that up on my own, it wasn’t going to happen. It’s a very strange feeling to be chilling in your house while another person works hard to clean it. She’s sort of the family cleaning lady, having done my uncle’s house for years and Gamma’s house for the last few years of her life. Now she’s doing my house. Just need to get my dad on board to give up his cleaning haha!

I soaked in a nice freshly scrubbed bathtub this afternoon and the water melted away all my weird feelings. I need to spoil my body right now.

Now Playing: “Everybody Hurts” from “In Time: The Best Of R.E.M. 1988-2003” (R.E.M.)

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Filed under 2014 Book List, Audio books, family, Gamma, gratitude, humor as coping skill, misty eyes, NaBloPoMo 2014, spoons, twitter me this

“Mr. Mercedes: A Novel” by Stephen King – narrated by Will Patton – A Health Update and Dark Mood Lifted

It pleases me that the book I’m up to on the list is a book I hated because I’m in a dark mood. I’ll go in to that in the life part of the post.

This book sucked. Or rather it sucked as a Stephen King book. It just wasn’t a Stephen King book. It was a Michael Connelly book with maybe some more violence and blood, but it was not a Stephen King book with some scary town like Derry or a clown or a haunted hotel or a Yellow Card Man.

It was a detective novel. A detective novel with no mystery at that. You know who the bad guy is because there are chapters written from his point of view. There was literally no mystery, not for the reader anyway. Connelly has written from the bad guy’s point of view before too but I don’t remember feeling like there wasn’t any mystery left for me.

This book started with so much promise! I remember being riveted from the first but then it just went on and on and on and was boring. If Will Patton hadn’t been the narrator, I don’t think I would have finished it. I returned it to Audible. That’s how much I didn’t like the book.

I had jotted a note for myself that read: Blatant, not subtle, foreshadowing that goes nowhere. Lexapro. I remember the foreshadowing bit, thinking that was my mystery but no. I don’t remember what it was that I thought was foreshadowing, just that it went nowhere. I don’t really remember the Lexapro part of my note to myself. Thinking back to the character that might have applied to, I’m guessing my thought had been that Lexapro wasn’t used correctly or something. I can’t remember.

I think the story had merit. I just wish he had published it under his old pseudonym so I didn’t go into it expecting a Stephen King novel.

Rating: Meh

“Mr. Mercedes” at Audible

Now for my dark mood. I shouldn’t say it’s dark as in depressed dark, just dark as in crap that thing I was worried about actually happened. usually when I worry myself to death over something, it never comes to pass. I shouldn’t even say I was worrying to death because I really don’t do that these days being on the aforementioned Lexapro.

I was worried about my MRI results though, and that worry turned out not to be for nothing. My new neuro was point blank in telling me I have four active lesions on my brain which means the MS is active and we need to act now. As he was talking I could feel my eyes getting wider and wider. Four active lesions? How did I not have any symptoms? How had I not lost the use of a limb? My hearing? My ability to breathe?

He said sometimes there are no symptoms. Since I’ve been home with time to think though, there have been symptoms, just small ones. My last two MS attacks were kind of huge, losing the vision in both eyes, so little symptoms like fatigue lasting for days, right foot cramping, joints hurting to touch, I just wrote off as getting older and having a chronic illness.

Four active brain lesions. He was able to see my old lesions from the MRI without contrast, the MRI with contrast lighting up the new ones. Unfortunately he doesn’t have my old MRI’s to compare to be able to tell how old these new lesions might be. That doesn’t really matter, the point is now.

I’m going to start IV steroids on Monday to “calm the brain down” as he put it. While I’m not looking forward to spending hours at the hospital and dealing with paratransit, yay steroids! Steroids kill all my pain! Yes, they suck too because they make you really hungry and give you hot flashes but no pain you guys! No pain!

Me and my silver linings.

I see Dr. V again next week and he’ll have the results of the blood test that got drawn today. I was so afraid he would push the old interferon injections on me like my last neuro but no! He said there are much better drugs now. The one we’re hoping I can take is a pill but I was tested for some virus that fifty percent of Americans have and if I have it, I can’t have the pill. I’ll find out more about this mystery virus but for now, I can’t remember what he called it.

If I can’t have the pill, the next one he would want me to do is a once monthly infusion of some drug. Again, I was in such shock from the MRI results I didn’t think to jot down the names of this stuff. I think from here on out I’ll be doing voice memos of my doctor appointments haha! I don’t think I’d mind even the once monthly infusion of a drug as long as it doesn’t kill my quality of life like the interferon injections did. And I wouldn’t have to give myself a shot every other day.

Ok so wow, my mood doesn’t feel so dark after writing that. I’m just really grateful I decided to get back under a neurologist’s care when I did and so grateful my Rays Twitter Family friend found me this neurology clinic all the way from florida. Thank you, Nurse K!

I do need to own the fact that I have neglected my health as far as the MS goes since 2008 because of my resentment at the MS itself and the doctors and the medications that didn’t keep me from going blind. My stubbornness is the reason for these four active lesions. I had no idea B was worried until I heard the relief in his voice when he asked what the next step was and I said treatment.

I won’t neglect the MS again. That’s my solemn vow.

I wonder what next week will be like. I’m looking at it as an adventure for Jayden and me. And no pain next week! Weeeee! Oh speaking of pain, I got a prescription for ibuprofin since I take so much of it it was breaking the bank haha!

Oh, please cross your fingers that my insurance will pay for the steroid infusions I need. I’d be lying if I said I wasn’t a little worried about that.

Jayden was just barking in his sleep. I’m glad he’s good an relaxed. He was off at the neuro this morning and I think it was because he could feel my tension. I’ll make next week fun for him even if it’s not fun for me haha.

Oh, when B asked if there was anything he could do, I told him chocolate would be happy making. I expected a Hershey’s Bar or something. He got me a box of Whitman’s! Such a good boyfriend.

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Filed under 2014 Book List, Audio books, baseball, doc, fellowship, gratitude, humor as coping skill, Jayden, mental health, NaBloPoMo 2014, spoons, twitter me this

“My Life as a White Trash Zombie” by Diana Rowland – narrated by Allison McLemore

Thank you thank you thank you Audible for daily deals that turn me on to books like this. I’m in love with the White Trash Zombie books! Oh yes, there are more than one. Yay!

Angel Crawford is a drug addicted self proclaimed white trash loser in Louisiana who wakes in the hospital after what she remembers as a terrible car accident to discover her body uninjured and a judgmental bitchy nurse telling her she overdosed. A couple cops tell her she was found naked on the side of the road. Why then, does Angel remember screaming metal and all that blood?

Turns out a terrific cure for drug addiction is zombification! the only downfall is one must eat brains.

This new and different twist to zombies is freaking awesome! The very human parts of Angel as she learns how to live life as a brain eater was often times gut wrenching and the addiction part of it all was spot on. It had me in tears a few times, just feeling for Angel as she faced the emotional demons all us addicts and alcoholics do when we can no longer numb out with substances and must face ourselves. This book was so much fun and I’ve listened to it again. The first reading of it had me laughing so hard in bed at times I asked B if he had heard me in the other room. Allison McLemore is freaking fantastic and really brings Angel to life, dropping jokes and one liners with a sweet southern drawl. I recommend this book to anyone! I do warn you, some of the scenes are a bit stomach turning as Angel is learning how to consume the brains she needs to live. Live? Stay alive? Keep her body going? Not rot? Super zombie powers, activate!

Rating: Marriage Material

‘White Trash Zombie’ at Audible

It’s fitting I was up to this book on the list today since I once chatted with the author, Diana Rowland, on Twitter about how we find an MRI relaxing and even have slept in the machines. I had an MRI today. Just a routine one, not one under the duress of f severe flairs. I’m establishing care with a new neurologist and he wants a baseline and to see what my brain looks like. I wonder if my brain is baseball shaped.

It was awesome, they let me pick Josh Groban radio to listen to on the headphones in the MRI machine. Unfortunately it was a Pandora like station so there were artists other than Josh Groban too but they were all relaxing.

I find the MRI comforting. The bangs and vibrations are meditative. I used to think I was just really weird until Diana Rowland tweeted one day about sleeping in the MRI machine. Kindred spirits!

She’s awesome! There are two more White Trash Zombie books in the future. I’ve read the four that are out. Hehehe had my braaaaaaaaain looked at today bwah ha ha!

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Filed under 2014 Book List, Audio books, humor as coping skill, misty eyes, NaBloPoMo 2014, sobriety, spoons, twitter me this

May have been my last crabs

It has ben so hard for me to think of a post, let alone write one, every day for NaBloPoMo this year. I learned a new term on the Patients Like Me forumyesterday. I don’t feel like doing a link so look at yesterday’s post if you don’t know what I’m talking about. Anyway the term is “cog fog”. Love ! That’s definitely me. I have no mental energy and my arms are sore because B and I went out to eat tonight to Joe’s Crab Shack.

I could barely crack open the crab legs to get the meat. My hands are losing dexterity and my arms were aching from holding my hands over the bucket and trying to crack the crabs.

I’m hoping this is temporary but I’m feeling more and more weakness as time goes on and my last two big MS relapses were after tooth infections. So, you do the math.

Fingers are crossed this doesn’t get any worse.

Did the subject line make you think I was referring to the venereal disease?

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Filed under humor as coping skill, NaBloPoMo 2013, spoons