Friday, February 26, 2016

This Week in My Life: Week 8 of 2016

Update on the car drama:

Took the car to a different place and was told that 1. the part had been put in totally incorrectly by the previous place and that 2. the real problem was something else entirely and that 3. it would cost about $400 to fix. Great. So the total with the part (that maybe wasn't even needed) + a rental car for one day + a new fuel pump + labor, the grand total came to $550. That would have paid for the new tires the car desperately needs, but oh well. At least the car is working again!

The view from here:

book + coffee + blanket = happiness

my mom made me this delicious breakfast burrito

it's looking and feeling a lot like spring out there
not at all typical for a MN february

On the MS:

Various paresthesias have been continuing, and now a more troubling issue has joined them: significant weakness of the left arm. Much like how I enjoyed making faces in the mirror when I had Bell's Palsy, I'm morbidly fascinated by this. Holding both arms above my head, or straight out, or in any position really, my left arm will slowly dip down lower and lower. It started yesterday and doesn't seem any worse today, but is also not any better. I experienced this before during my first awful year of MS struggles, especially difficult because I was trying to finish my master's degree in horn performance at the time and holding my horn up with my left arm was a major challenge. I'm still not sure how I completed my master's recital for this reason alone.

What I read this week:

  • Reread my beloved favorite, To Kill a Mockingbird. It's as great as ever. So many dear characters and plenty of tears.
  • Crimson Shore. Another thrilling adventure (ending with a massive cliffhanger) with one another beloved character, Special Agent Aloysius Pendergast.
  • About three-quarters through Tess Gerritsen's Playing With Fire. This author usually writes medical thrillers, but this book centers around a piece of music for violin. Turns out Gerritsen is some kind of superwoman  - not only is she a doctor and a bestselling author, but she also wrote a 7-minute composition for violin and piano to go with the book. I bought a recording and it's pretty cool to listen to while reading the book since the piece of music is such an essential part of the story.

Wednesday, February 24, 2016

Texts from Chronic Pain

Saw this BuzzFeed list on Facebook yesterday, and had to share. It is so very spot on. Today's my birthday, so I especially enjoyed #5. If you have chronic pain or know anyone who does, you'll enjoy these (or maybe learn something about what life with chronic pain is like).

There is a bit of profanity, so consider this your warning. Texts from Chronic Pain

Thanks for this, BuzzFeed, and for using your massive platform to cover an important and often ignored topic!

Saturday, February 20, 2016

This Week in My Life: Week 7 of 2016

The view from here:

I've got a nasty cold with horribly congested sinuses.
I've only been sick like this one other time since the MS diagnosis, as opposed to at least a few times a year previously.
I like to say that there are certain benefits to having an overactive immune system.

Yes, more time staring at piles of tires.
I like that this picture is blurry, because that's kind of how I was seeing the world yesterday.

Update on the car situation and reason #2 why yesterday sucked. The part I ordered arrived yesterday, so I took the car in. I planned to have the courtesy car bring me home while it was being worked on, but turns out, this place doesn't have a courtesy car! They thought it would take around an hour. There happens to be a Mexican place right next door that I happened to have a gift card for, so I thought this would be fine. There's also a thrift store in the same little strip mall, so I stopped there first to buy a book, since dining alone without a book didn't sound fun. After eating, I returned to the car place. It wasn't done yet, so I sat down by all the tires and continued to read my book. (One perk of the cold: I wasn't overwhelmed by the smell of rubber like I usually am in there.) And then THREE more hours passed. So the one hour estimate became FOUR hours. Then when they were finally done, the verdict was that the part I'd spent $110 on that they told me I needed did ABSOLUTELY NOTHING to fix the problem!!! They didn't charge me anything for the labor and said they thought the real problem was maybe this other thing and suggested a different place to go to get that fixed. Hopefully next week's update will be a happier tale.

spent Valentine's Day with friends celebrating our love for the horn

What I made this week:
A Bacon/Broccoli/Basil Frittata
(I actually made this last week but forgot to post it then.)
What I read this week:

Finished Imagine. I'm now 100% positive I read this before.

Started and finished Defending Jacob and Left Neglected and The Reader, the latter being the thrift store book I read all day yesterday. All of these were good (The Reader being my least favorite by far, mostly because I had trouble really caring for any of the characters. I felt some empathy for them, more towards the end of the book, but I was too put off by a lot of what they did.) Left Neglected (by the author of another great read, Still Alice) was definitely my favorite. 

Next on my reading docket - rereading To Kill a Mockingbird (after the loss of Harper Lee) and reading Crimson Shore

Once again, I'll end with wishes that next week is better than this one!!

Friday, February 19, 2016

TWIML - Delay!

For those of you readers waiting on bated breath for the Week 7 edition of TWIML, you're going to have to wait  an extra day this week. I'm feeling awful with a nasty cold and I've had a really terrible, horrible, no good, very bad kind of day, so I'm just going to wait until tomorrow. See you then!

Friday, February 12, 2016

This Week in My Life: Week 6 of 2016

I totally failed this week on the remember-to-take-pictures front, especially aggravating since I had an unprecedented FOUR social encounters with various friends. Since not a single picture from any of these encounters exists, you'll just have to take my word for it that I wasn't an isolated somewhat-antisocial introvert this week.

The view from here:
spent HOURS reading a book waiting for my car to
1. have an oil change and then later on the same day, 2. figure out what on earth is wrong
as some major car problems have developed
Then, I spent hours trying to figure out how/where to buy a car part at a reasonable not-exorbitant-highway-robbery price. Plus, since I loooove cars and totally understand the language so well, all this internet-ing was loads of fun. And the reward for my struggles was the privilege of paying $120. And that doesn't include the labor part that will come later. Plus, I have weekend plans out of town, and now I don't how if I can get there, because the car currently can't handle it. Liz Lemon captures my current feelings perfectly:

this bush is very pretty during the winter.
the rest of the year? not so much.

whatever, i guess the sparkling white stuff can be *kind of* pretty, sometimes.

What I read this week:

Big Magic. Loved it as I knew I would!

Halfway through Imagine. I'm almost positive I've read this before, but I'm going to finish it anyway. I think it's a good book, but the author's whole scandal with plagiarism and presenting made-up things as facts, obviously casts a major pall over it. 

getting my practice on back in 1997

This week was decent overall, but today has really sucked, so let's hope next week is better!!

Friday, February 5, 2016

This Week in My Life: Week 5 of 2016

Major accomplishment this week:

I had a Winter Storm named after me, NBD. I obviously made sure said storm didn't affect me whatsoever and I also made sure it led to a snow day for my niece. All in a day's work. One of my greatest accomplishments, really. In all seriousness, though, I was way too excited when I heard the name of the storm.  And I was just a little disappointed no one made one of those fake weather pictures with my head on it, like people did of the Jonas brothers in the last storm.

I mean really, people, would this be too much to ask?

But in sad news, a blizzard IS heading my way this weekend. I'm just glad this won't have my name on it.

The view from here:

a nice Winter sunset

a trip to the library
i worked at this very library for around 5 years
the neatness of these shelves is NOT up to my standards!

couldn't fall asleep one night because these lights were flashing outside my window for around an hour!
drove me crazy. not sure what it was, but they pulled a car over and stayed there for way too long.

I had a lot of police action in my life this week. On my way home from a trip to Walgreens to pay all of my money for a measly 9 pills, I accidentally drove through a major standoff-type police situation. Lots of cops, lots of guns, including at least one huge gun. (Not exactly a common sight in this small Midwestern city.) Oops. In my defense, they hadn't made it really clear the road was blocked off on the one side, and I just followed the car in front of me around what I later realized was an attempt at blocking the road. It was too late when I realized what was going on. (Actually, I still have NO CLUE what was going on. Nothing in any of the news sources has reported anything. I guess this is a good thing, as whatever was going one was apparently resolved without any shootings/deaths/etc as I'm sure that would have been reported. Still, though, not knowing is driving me crazy!)

Things I made this week:

egg sandwich on a biscuit with peppers, onions, pepperjack cheese,
crispy BACON, & avocado mash with lime juice + cayenne

Lots of origami Valentine's Day card for my Etsy shop:

What I read this week:

Finished A Fireproof Home for the Bride (loved it!!), started and finished Now You See Me (pretty good), and started Big Magic (LOVE this author and already loving this book!).

How I'm feeling this week:

For most of the week, TERRIBLE! Now, incredibly relieved and starting to feel back to my normal.


I'm so over winter, so I'm taking it back to February 2012, when I spent around 10 days in California with my friends Heather & Brian. Lots of beach time, hiking, ziplining, kayaking, whale watching, batting cages, great food, and great company.

Wednesday, February 3, 2016

Lyrica Insurance Saga: Sweet Resolution At Last

The Backstory:

my miracle drug
I've had severe chronic nerve pain in my feet and legs for around 8 years now. After around a year of trying various drugs and combinations of drugs, I finally found some relief with a very high dose of Lyrica (300 mg 3x/day). This dose is quite a bit higher than the FDA-approved maximum of 600 mg a day. Lyrica at this high dose certainly comes with negative side effects, but it also was a complete lifesaver and gives me back some quality of life that was impossible without it.

I've gone through the Prior Authorization process several times over the years and always managed to get it approved. Until...

Evil Insurance Company Says No:

Doctor submitted the required info and then the insurance company said DENIED, but you can appeal if you want. They said I was approved for 2x/day. Cutting the dose by one-third with this highly addictive drug causes serious, debilitating withdrawal symptoms (not to mention doesn't work as well, duh). I paid around $200 out of pocket for LESS THAN ONE WEEK'S WORTH of the drug while starting the appeal process. I live paycheck-to-paycheck and $200 is quite a lot of money in my situation. Knowing I couldn't afford to keep buying the drug at these outrageous prices and afraid I might ultimately not win the appeal, I decided to try the 2x/day dose. Having gone through brief periods of total withdrawal in the past, I knew this wouldn't be a good experience, and it wasn't. These past several days, my pain has been significantly worse, and I've felt very ill. Nausea, diarrhea, headaches, and generally just feeling not right. Knowing this wasn't sustainable, I started looking into going to Mexico (or sending someone else - my sistar started looking at plane tickets right away) to try to buy the drugs there at a more affordable price.

In the meantime, I filled out the paperwork for the appeal. I also talked to my doctor's office and they immediately started an appeal of their own.  And then...


I knew the doctor had an appointment for an oral appeal via phone this week. That happened today, and then I got the call - IT WAS APPROVED!!!!!!!!!! I literally started sobbing in relief. (I've been crying quite a lot the past several days in desperation and anguish and fear, so relief-sobbing was a nice change.) I am so very relieved and will be taking my full dosage again starting today. I'm sure it will take a few days to feel normal (my normal anyway) again.

A Gif to Express My Current Feelings:


Thanks to those who've been following along in this saga and supporting me. I hope none of you have to experience this kind of insurance/medication trauma!