Wednesday, March 16, 2016

WTINW: The Two Year Anniversary

Profound apologies for a brief interruption of my favorite week of the year (rounds 1 and 2 of the tournament!).

As it happens, this week also marks an important anniversary: Two years ago this week, I had my first major symptom flare, first realizing that something was 'wrong'. 

It was much longer before we realized that 'what was wrong' was not easy to pin down and was not going to just go away. But that one day marked the turning point. The line between 'okay' and 'not'.

There are many stories to tell.... of how my symptoms evolved, of the warning signs leading up to The Incident, of my slow education of how the world of medicine works: the players, the silos, the competing goals.... I've mostly avoided telling them because, well, they are all long.

Today I think I will just try to explain what happened that day, and where I am right now. 

The Incident:

One evening 2 years ago, I sat propped up on the couch with my laptop, (probably reading and watching basketball stuff), and my cheek started to feel 'twingy'. Since I'd had my wisdom teeth out a few months before, and I'd had a hard time healing from it, I thought maybe it was related to that -- an exposed nerve or something.

But through the evening it started to creep further up my face and down my neck, until it was at the top of my head/scalp... and then it started to spread down my back, arm, hand, fingers... side, leg, and by the time I went to sleep last night, had reached my foot.

Suffice it to say that I was more than a little bit concerned. But I was tired, and after all, had not been feeling well for awhile... and sleep has been my magic cure-all since I was a small child. So I went to sleep planning to make a doctor appointment in the morning if it was still going on.

And then it was morning. And it was not only still there, but seemed to be getting worse. And not only was there this 'twingy-ness', but in the shower I realized that I could feel hot water on the left side of my back but not on the right. And at that point, I was getting pretty close to freaking out.

I managed to calmly pull out my phone, and started typing numbers.... and realized with a shock that my fingers were not cooperating. At which point I finally sort-of did freak out and drove to the hospital, reasoning that it was either going to just go away and I would feel like an idiot, or it was going to get worse, and I should probably drive to a medical center while I was still able to.

I made it to the hospital without incident, found my way to the front desk (Baptist is a crazy maze, just saying), nervously looked around and said something like:
So... I'm 30-something years old.
And I know that I am not having a stroke.
But I really need for someone to tell me that I'm not having a stroke.

The emergency department was very thorough, running all sorts of tests and CT scans and MRI's, but after ruling out the major players, and deciding that I wasn't in any immediate danger, sent me home with instructions to come back if it got worse, and follow up with a doctor in any case.

Thus began my journey through the medical system.

Since That Day:

There have been a ton of symptoms affecting nearly every group of organs -- from GI issues to weird dark patches of skin to weight changes to vision.... but many of them have come under control by becoming Celiac-level ruthless about gluten and dairy. (Which is a story all its own).

But then there are the stubborn ones that just don't seem to budge... The symptoms that linger, and might get worse during a flare but never quite resolve, like the other flare-stuff...

Many of these symptoms fit under Complex or Hemiplegic Migraine, and many of them fit under ME/Chronic Fatigue Syndrome, which are the two official labels I have for this crazy illness.

But there's one thing to consider that I feel remains unexplained:

At no point in the two years since The Incident have I fully regained the feeling in the right side of my face. Every day, all the time, right side of face can feel pressure but not sharpness or hot/cold. 

Which sort of begs the question, if it's a migraine, why is it a constant state that never goes away? And to my knowledge, all the numbness/weakness on my right side is not the usual sort of thing that happens with Chronic Fatigue? Plus all the other stuff that happens as a flare, which we sort-of ignore now that it's 'under control'...

The big elephant in the room is of course "MS". And for the better part of a year we chased that. The very short answer is: the MRI was inconclusive, and it hasn't changed. So the door is still open a small crack, but with the severity of symptoms, we'd expect there to be more evidence. Second and Third opinions concur.

I absolutely understand the labels the doctors have settled on. But at the same time feel like it's fair to push back on that a little and say 'it seems like there's lot about this that we don't understand and can't explain'.

And also, I think it's fair to say that despite the labels, I still don't fit in a convenient 'box' in the system, with a checklist, treatment protocol, and support group to go along with it.

For these reasons, I still in many ways feel 'undiagnosed' although my doctors would have valid reasons for telling you that's not the case.

So.... What does this mean; Outside of the flares, what, exactly, is 'wrong'?

The Current Symptom Breakdown 
(Partial list of the major everyday issues)

Numbness on my right side. 

- 'Numbness' is a little vague -- I can feel pressure but not hot or cold, or sharpness.

- Always on my right side. Often sometimes extending from the top of my head all the way to my toes, but always in my face. (The first question people ask is usually about whether it might be a pinched nerve in my spine... We know it's not because we checked, but also because a pinched nerve in my spine wouldn't be causing numbness in my cheek, eye, etc.)

- I also did a nerve conduction test, where they ran electricity through the nerves in my arm and my face, and they were working fine. (Which rules out something like carpal tunnel causing the issues with my right hand.)

Burning Pins and Needles on my right side.

- At different places, different intensities, but is always there, most often 'settling' in my face, and side/hip.

- People tend to relate this to the tingling that happens to people as part of a migraine aura, and that is definitely a good theory, but there is something I realized I don't communicate very well about this --

- Before finding medicine that could help it, the normal every day amount of pain was equal to when I burned my hand on the stove and burned all my fingerprints off. Every day. All the time. Constant. Often flaring up much worse than that. These days, with medicine it tends to range around a bad muscle cramp or bad sunburn. But just knowing that there's a ceiling on it is a relief, and helps me ignore it.

Motor Control Issues

- My right side has taken a big hit. And when the numbness and/or pins and needles 'settle' into fingers, foot, arm, leg, etc, motor control really goes out the window. Even after 'recovering' from an episode, I never quiet get it back.

- It's not that noticeable to the outside world, because I overcompensate with my left side, but it's actually one of the more frustrating things to deal with. My right hand is much slower than the left when I type... have trouble throwing overhand because my fingers won't know when to release it... it's easier to eat left-handed...


I've been using a walking stick lately, which seems like a new thing, but the truth is I really needed it all along (which is yet another story.)

But 'dizziness' is kindof a vague term there are a couple types:

Feeling lightheaded/like I'm going to pass out. If I stand long enough without moving, it feels like I have to will myself to stay upright. (Very noticeable standing in line at the store or standing to pray at church...)

Spatial awareness and vision issues. This one is harder to explain, but if you've ever had a new pair of glasses, or looked through a warped piece of glass, it's like that. Not 'blurry'. It's more like "wavy" and "flat". "Flat" meaning...

I don't really have depth perception. I can't tell how fast objects are moving, or how close or far away they are. Driving in daylight is okay most of the time but at night almost never.

So it's also hard to tell if the floor is slanted or if I'm about to run into something. There are a lot of days that the walking stick is less about steadiness and more about spatial awareness.

There are days that I would be totally fine without it if I could just always run my hand against a wall to orient myself (which was how I got away without using it for so long). The trouble is that other people don't know that's what's going on, walk between me and the wall, or don't know that I will have trouble walking around them, and walking down a crowded hallway becomes much more difficult than it should be.

- As a side note, this is one of those things that's really different out of the house vs in the house... At home, were everything except the cat is stationary, I move much free-er and faster... and wind up covered in bruises from all the things I've walked into. So it's not better at home, it's just that I know if I run into something it's the coffee table, and not a small child, so I'll let go of being careful for awhile.

Vision Issues:

See 'Dizziness'

Memory Issues:

Here's the thing about fatigue/energy.... Usually something happens before my body says 'no mas'. And that something is that my brain completely stops working.

Left/right, backwards/forwards. I cannot add and subtract units of time to save my life. I have to set a reminder on my phone for absolutely everything. Siri has been a life-saver.

-  I can still figure things out, it just takes me much longer than it should. I have to write everything out, draw pictures, rely heavily on external-data-storage in physical tangible forms that I can see....

...and also, rely on alternate inputs. So if I have a fork in one hand and a piece of paper in the other... "which one to throw away" becomes a problem-solving activity, where I think about things like "which one is heavier".

Physical Fatigue

at a certain point, my body just stops working. After walking a lap around a track, my right side starts dragging, I get really stiff, I have to think and concentrate about movement to make it happen, so thinking and walking or talking and walking is usually not great and either causes spacial awareness issues or crazy conversations with misunderstandings and miscommunication.

From the very beginning this was one of the most frustrating things to explain. Right before The Incident, I ran a 5k race that felt like Death. It felt like I'd had the soul sucked out of me. And I say that as a person who has run many many races out of shape. I've run with 8 year-olds who like to sprint/walk the whole way, and with much faster siblings and friends... this was nothing like that. This was like I had the full-blown flu and was on mile 20 of a marathon.

From the very beginning I kept saying that my body wasn't working right. It gets stiff and hard to move, it feels heavier than it should... it breaks down and just doesn't want to work.

The problem is, I can "pass" all sorts of strength tests. First of all, Yes. I can do anything once. Through sheer willpower I can force myself to pull a box down from the attic. But what you don't see is the aftermath -- the fact that it used all my energy for the day, that I slipped on the stairs, that I wasn't able to cook dinner later that night...

And there's also the drastic and sudden drop from where I was -- I was never a great athlete, but I was at a point where a 5 mile run was normal, had run a RAGNAR, and started half marathon training...

- Also, different tests reveal different things -- just last week the physical therapist did a timed walking test and I did not meet the standard for a normal 80 year old. Where was that test two years ago...

So what does all of this mean? Two years into this, How am I?

There are days that I am frustrated and angry.
There are days that I am hopeful and content.
There are days I would tell you I'm really good, forgetting how much smaller life has become in order to have 'really good' days.

I am grateful for supportive friends and family.
I am grateful to have (finally) found a good group of caring doctors and medical folks who want to find ways to deal with the symptoms even if we can't fully explain the cause.

I am confident that God is leading this somewhere.
But impatient to get there.

I am leaps and bounds beyond where I was a year ago, or two years ago.

..."I'm okay". But I'd like to be Well.

*WTINW: Ways That I'm Not Well

Tuesday, March 15, 2016

Wildcat Sports: Tournament Time!

How glorious and wonderful and fun is March. SEC tournament win, fantastic games from other teams, bracket selection, predictions. This is why I love March!

BTW: Saturday Sports is on Tuesday due to tournament schedules. 

Field Reports:

My staff reporters were on the scene in BBNashville, sending in pictures of a town jam packed with blue and triumphant revelry.

What Happened:

We Beat Alabama
The KSR Highlights
Sea of Blue Highlights and Notes
Long-form Takeaways from Sea of Blue

We Beat Georgia
The KSR Highlights
Sea of Blue Highlights and Notes
Long-form Takeaways from Sea of Blue

We Beat Texas A&M 
(and were crowned kings of the SEC)
The KSR Highlights
Sea of Blue Highlights and Notes


Friday night's quadruple overtime UConn vs Indiana game is why March is The Best Month Ever.

Calipari went on an epic rant about seeding and selecting the bracket. The best part was when every person afterwards kept saying "Cal is just crazy, I don't even know what that was.... except that he's right..." Sea of Blue KSR

Also there was something about knowing he's Italian because of his nose... Coach, you're wearing a high-fashion track suit and giant rings that you show off with all your gesturing. (Yes, #stereotypes, I'm just saying. He brought it up!)

But fugeddaboutit. The teams that bad-seeding hurts are the teams we play.

Not everything about March is the best, though... March announcers are the *worst*. Adding to all the usual annoyances are the extra announcers who normally cover other stuff, and haven't watched college basketball all season.

You have one job. Everything else is forgiven if you will at least Call The Plays In The Game In Front Of You. 

I do not need to know that it is wine week, or which player would be matched with which wine. (Yes, this actually happened. No, it was not one of the 'girl' announcers who did it.)

Other terrible things: The 2 hour reality show called Selection Sunday. It got so bad someone leaked the full bracket 30 minutes in. Full disclosure: I didn't actually watch this year, in what turned out to be one of my best decisions ever.

What's Next:

The Big Dance, of course.

The whole printable bracket

Fast Facts on every team

Here's all sorts of stats to sort out Kentucky's path to the final four.

Roundup of Bracket Challenges (some with rewards for good picking)
Winston-Salem Aldi Bracket Challenge
ESPN Tournament Challenge
Sea of Blue
Courier-Journal Contest
USA Today
And don't forget the NCAA's own contest (because, you know, irony. because, betting on college sports is illegal?)
Long list of more

Family and Friends: The group is officially live at the usual place! Email me for info. Or dad. Or one of the siblings. The usual rules apply: Up to 3 entries allowed, generous prize-package sponsored by The Florida Wildcat, himself!

First Round:

Kentucky vs. Stony Brook (approximately) 9:40 p.m.

Second Round:

Seriously? you want me to jinx it? (But okay, it might be Indiana).

More Wildcat Sports

Monday, March 14, 2016

Music: Basketball Nights

ESPN is using The Nights by Avicii for their #ChampWeek montage, and it is the perfect kick-butt take-no-prisoners live-life-Alive answer to Mondays.

Welcome to a glorious new week, with all the adventure, challenges, and fun it will bring.

And hit the ground running! with big goals, and wild leaps of faith. (And Basketball.)

Avicii -- The Nights

When thunder clouds start pouring down
Light a fire they can't put out
Carve your name into those shining stars
He said, "Go venture far beyond these shores.
Don't forsake this life of yours.
I'll guide you home no matter where you are." 
Live A Life You Will Remember

More Music Mondays

Friday, March 11, 2016

Links and Lists: Five Great Not-Candy Easter Basket Gifts

Easter is quickly approaching, and I was reminded of The Great Stocking Dilemma: when someone has food restrictions, what do you give them instead of candy? Not just from a gluten or dairy perspective, but also diabetics (or just health-conscious folks) avoiding sugar....

So I thought a great Friday Five might be to come up with fun, easy, small gift ideas that would be a great substitute for candy.


Part of the reason candy is such a popular thing is that it's so easy for the gift-giver. Walk into any grocery store and somewhere between produce and the cash registers you will walk into a Wall Of Sugar And Chocolate.

So I tried to think of ideas that are just as easy to find -- stuff found at regular grocery stores, and won't require any extra planning or hoop-jumping.

Also... It's not really a kid-focused list. Best guess for kids would be those small toys that can fit in plastic eggs?

Also.... I decided to avoid Gluten-Free/Sugar-Free type substitute-candy because it can be difficult for the gift-giver to filter through confusing packaging. The whole point is to find gift-ideas that are easy!

Well, enough with the ground-rules, let's get to the good stuff!

The Friday 5 Small Gift Ideas That Aren't Candy:

- Coffee or Tea. Coffee or Tea. I absolutely love finding my favorite coffee in my stocking or Easter basket! K-cups seem especially appropriate since they are sort-of candy-sized, but whole bean is a wonderful treat, too. One caveat: probably steer clear of the flavored versions -- hazelnut/vanilla bean/mocha-almond... (Amazon)

Kitchen Chachkies: A fun dish towel or pot holder, or special mug or nested measuring cups. I usually forget that the grocery store carries these things, and look for them at Target or Crate and Barrel, but there are sometimes fun, unique items hidden between the paper plates and cleaning supplies. (Amazon)

- Small Gift Cards. I love getting small $5 gift cards that give me permission to 'splurge' on the occasional impulse item. Great small-amount card ideas: iTunes, Whole Foods, Starbucks, or Amazon... (Amazon)

- Journals and Pens, Notecards, or Coloring Books. Adult coloring books are crazy trendy right now; therapeutic and relaxing, and something about 'mindfulness'.... I haven't tried it yet, but I've been thinking about jumping on the bandwagon... (Amazon)

- A Favorite Magazine. Real Simple, Our State, Garden and Gun.... National Geographic... Wired.... Especially if it's an edition related to a special interest of the 'gift-ee' (Amazon)

I would love suggestions, what are your favorite small-gift ideas that aren't candy?

More Links and Lists

Wednesday, March 9, 2016

Life: The Stewardship of Glorious Days II

Profound apologies, but due to Abundant Sunshine, blog will be closed until Friday.

The Ansel Adams: Eloquent Light Exhibit opens on Friday at Reynolda House..... the meantime, you might be able to find me with a book on their front lawn.

More SoGD*
*Stewardship of Glorious Days

Monday, March 7, 2016

Music Monday: Itzhak Perlman and J. S. Bach

I've been a little 'meh' about music the past few days, seeking out quiet and stillness.

So I'm pulling from my when in doubt, in emergency, brake glass stash and finding Bach. and Perlman. Together.

Like Peanut Butter and Chocolate. Just what I needed this week.

Bach - Solo Violin Sonatas

Listen Free With Amazon Prime

Sonata No1, parts 1-3 on Youtube

My first introduction to Itzhak Perlman was on Sesame Street. Later I was able to see his dress rehearsal for a performance with the Orlando Philharmonic, either through the school Suzuki group or FSYO. And so he became one of the heroes of my childhood and teenage years.

But watching the Sesame Street appearance again I realized with a shock that I am not just the girl learning to play violin anymore, but also the one using a walking stick to get around, and avoiding stairs.

Good grief, music is a mixed bag these days, magnifying everything that is easy and hard, good and bad, old life vs new life.

It's a tempting moment to overthink all of this.

Instead I think I will load the iphone, and take a cup of coffee and a new book out into the bright sunshine of a beautiful day, with a beautiful soundtrack.

More Music Mondays

Saturday, March 5, 2016

Wildcat Sports: Welcome to March

It's officially my favorite month of the year, yal!

March is just the absolute best. We can put winter behind us, and head outside again. Throw open the windows and get a bit of a break on the electric bill. And oh yeah, Wall To Wall Basketball to celebrate spring and life and bring joy to your heart.

You can have Valentine's Day and Birthdays and Hippity Hop baskets. (Just to be clear: keeping the Resurrection. 'Jesus' parts of holidays are all 'keeps'.) Give me March Madness and I am one happy girl.

But before we get to the big dance, we still have to close out the regular season and make our way through the conference tournaments.

Which makes it a great time to check in on the competition -- catch up on the teams that are supposed to make a big run, or might be set for a surprise upset.

As much as I love Kentucky Basketball, I love College Basketball even more, and even if Kentucky is having a rough year, I will love watching the tournament and picking bracket upsets and testing out my new 'system', and setting up the annual Family and Friends pool....

Welcome to March, let the games begin!

If it's Saturday, you may not want to watch.

5 losses on Saturdays, and I just want to suggest maybe we should adjust the schedule. Just sayin.

Here's what happened.

And oh yeah, and Vandy stormed the court. I forgot about that.

The recovery road trip to Florida

Aka: the game in which everyone showed up, played hard, and the shots were in our favor.

Also: the reason why Hope Springs Eternal even through the rough season we've had.

A good day in the Sunshine State

Notes, stats, and Other takeaways

Catch up on everyone else's season:



Everyone Else

Weird fact for a weird year: 

BC might finish the season without a single conference win in football or basketball. 

Next Up

LSU March 5, 2:00 PM

SEC Tournament March 9-13

Seeds? Here's your handy guide.

More Wildcat Sports

Friday, March 4, 2016

Links and Lists: Healthcare and Health IT Twitter Chats

This week's Friday Five: Healthcare Social Media. Before embarking on my crazy health journey, I was more than a little bit anti-social media. True fact: my twitter account is less than a year old.

It turns out that yes, social media is a strange world, and I am definitely not the personality type to want to live full-time in the marketing - communications world.. But.

But, then I stumbled on my first Twitter Chat, which just happened to be #patientchat, with some wonderful folks who also saw how broken the medical system was, and wanted to identify the problems, and empower patients and doctors to find better solutions.

Through Twitter, I found 'mah people'. And it has been a huge help to know that the obstacles I've run into were not just because I was clueless, but because the system really is a crazy mess.

Eyes Opened.

There are many more Twitter Chats out there, these are just the top ones that I've enjoyed lurking or participating in.

Five Healthcare Tweetchats great for sharing information and making connections:

#patientchat - Promoting ePatients and Patient Advocacy
Every Other Friday at 1:00 PM (Eastern)
Hosted by @patientchat and @Intakeme
More Info

#hcsm - Healthcare Social Media
Sundays at 9:00 PM (Eastern)
Hosted by @HealthSocMed
More Info

#hcsmca - Healthcare Social Media Canada
(has a lot of crossover with US participants)
Wednesdays 1:00 PM (Eastern)
Hosted by @hcsmca
More Info

#HITsm - Heath IT and the role of Social Media
Fridays at 12:00 PM (Eastern)
Hosted by @HealthStandards
More Info

#HCLDR - Health Care Leader
Tuesdays at 8:30 PM (Eastern)
Hosted by @hcldr
More Info

Bonus: Two I haven't been able to check out yet, but want to:

More Info

More Info

Are there any I missed? What are your favorite non-healthcare Twitter chats? What's your take on social media -- great innovation to stay connected, or necessary evil?

List and Schedule of Healthcare Twitter Chats

More Links and Lists

Wednesday, March 2, 2016

Local: Winston-Salem's Bond Proposals

In the 2014 election, there were what seemed like a ton of city bond proposals on the ballot.

So I was curious and wanted to check in... what's the progress, how is the money being spent, and it looks like there are some new county proposals on the horizon, so where do they fit in?

There is an awesome navigator to look at how the proposals have been implemented in each Ward online at this link. And the summary is at this link.

But I kindof took a detour and started looking at the upcoming bond proposals that might be on the ballot this go-around. These are from the County, not the City, and it should be interesting to see what makes it to the voters, and whether voters will be influenced by having just past a set of bonds from the City.

Potential Upcoming Forsyth Bond Proposals:

Forsyth Tech: $65 - $70 Million*
*depends on whether a state bond package is passed
$8 million for main campus renovations
$18 million to renovate the former WSFCS Career Center
$21 million to replace the current library with a Learning Commons with meeting rooms, study space, maker spaces and more.
$6.4 million for an additional facility for auto-tech and racing-tech programs and other needs.
$16.6 million to create an aviation center near Smith Reynolds Airport.

Parks and Rec: $10 million
$3 million for upgrades at Tanglewood Park
$800,000 to replace or add playgrounds at various parks
$850,000 for master plan projects for Horizons Park
$5 million to build an agricultural multi-use event center in a county park.
$300,000 complete the Triad Park section of a Piedmont greenway.

Winston-Salem/Forsyth County Schools: $325.8 million*
*Expected. Proposal has not yet been submitted.

SciWorks and Children’s Museum: $25 million
To build a joint museum off Third Street on the old sheriff’s office property.

County courthouse $82.5 million or $120 million*
*Expected. Proposal has not yet been submitted
To either expand or build a new county courthouse. Estimates due in April.

According to new debt-capacity models presented Thursday, the commissioners could issue anywhere from $263.1 million to $579 million in bonds over several years, with the corresponding increase to the property tax rate ranging from 4.5 cents to 9.7 cents.

Winston-Salem Journal Article