506. A Beautiful View

Matt and 2 Team Member from OAS (Oregon Adaptive Sports)

Yup, Matt Hankey is definitely tougher than I am. Diahanne (the Pool Ninja) and her younger son, Dylan, took Matt skiing. Dylan’s a skier and he thought this up. They went through OAS – Oregon Adaptive Sports. I found this pic (below). Would you have the courage to do that? Personally, I’d rather sit in the chalet and drink hot cocoa. (With handcrafted vanilla and peppermint marshmallows cut into hearts.)

oregonadaptivesports.org

Matt is tough bc I gave him a speech about how he should put his mental/emotional armor on. I did gymnastics extremely briefly and badly, but my kinesthetic memory is strong. The first time I “ran” on land (w M37 at Planet Rehab) I cried (in secret). So I was thrilled that Matt was going skiing, but concerned since he probably hadn’t felt the wind on his face since before the AVM ruptured.

I needn’t have worried. He LOVED it. He told me, we were going SO FAST!! And he got to do the steering, although D and D were “encouraging” him to use his left arm so it was a therapeutic exercise LOL.

Apparently Matt still has a need for speed.

I’ve done this before – given him long email pep talks that he responds to with a single pithy sentence, typed with one finger but saturated with meaning and born from an understanding of Survivorship. I knew I wanted to write about the Ski Trip but hadn’t connected with anyone yet. Last Tuesday Matt posted a pic on Instagram –the colors are superb. The mountains are spectacular. His smile is real.

Me to Coach R: Shirley wants to know if you like her new dress.

Last Thursday, April 6, was the 5th Year Anniversary of Matt’s AVM Rupture. I call it, Shirley’s Birthday. Shirley is my (FEROCIOUS) Wolf, Ed’s apprentice.

Ed with Trainer D

Ed needs an apprentice because the next day, Friday, April 7, was his 86th birthday (the 6th Anniversary of my AVM Rupture). This is naturally a difficult time of year. But the last few months have been particularly rough (after I published my Eagle Update) – I realized that I don’t really talk about my symptoms, maybe I should – but I get tired of it. Anyway, I really appreciate your prayers on an ongoing basis. But let me just say that in the midst of trouble, I knew that it’s a basic scriptural principle to see things that are Not Seen. And when I applied myself to this there was overwhelming confirmation of God’s care, protection, and faithfulness – and that all of this TOTALLY fits the pattern of how He does things. (Which is not to say that it’s not scary – because it is – but in a chilling and exhilarating sort of way.) PS. I took a hit around the New Year but I’m getting stronger and stronger.

Eagle Update – Dec 2016

 

I had been wondering how to “celebrate” Shirley and Ed’s birthdays. It turns out that Dylan and Diahanne took care of it. They got all Matt’s gear to his house the night before and left for the mountain (Mt. Bachelor) at 5am the next morning. Then they proceeded to have what Matt termed as “an Epic Ski day.” Apparently it was totally lit.

 

David setting up mats for my Cartwheel. Randy was totally in favor bc he is a wrestler and I was not asking him to spot me. Trainer D is a gymnast so he was the Chosen One.  He didn’t think I was serious but when I wouldn’t let it rest he got the mats out even though he looked rather green in the face.  I’ve never seen him sweat like that.

I wrote at the end of Trainer D’s book about the time he allowed me to try a cartwheel. (Ch. 15 “Cartwheel” – Vol 2. Learning How to Live.) I compared it to how a dear friend of mine took her son to the beach (he’s a transplant survivor and also has awful shellfish allergies) – she is a surgeon herself and planned out all the emergency routes to the nearest facilities and brought everything she needed to keep him alive long enough to get there in case anything happened. It was important bc he hadn’t been to the beach before, and so much of his childhood was spent as an inpatient getting the transplant that she was bound and determined to give him that experience. She calculated the risk and made arrangements.

As a Survivor I have been so grateful that I found David and Randy, who are willing and able to vouch for my safety so I can try things, experience new things, and remember old ones. Okay, so I might have badgered David into the cartwheel thing, but that’s neither here nor there.

When Matt posted that pic on Instagram he hashtagged it #beautifulview. That was the part that made me cry. I tried hard to remember the last truly beautiful view I saw.

It was in Africa. 6 years ago in the hills of Burundi, when we went on a picnic at a Tea Plantation. While I am learning to manage my symptoms better and better, this means I need to pay attention to the effects of travel on my body. Right now the rule is that I must take a Muscle Relaxant Rx prior to every plane ride and car ride (1 hour+) because travel takes its toll on me more than I’ve been admitting. So for now I am most comfortable within a 30 mile radius of my parents’ house.

If I REALLY wanted to go to the beach or skiing, I have an amazing bunch of friends who would make that happen in a heartbeat. But I’ve decided that it wouldn’t be worth it for me. But it warms my heart to know that I’ve got people who would arrange it for me if I asked them.

I cannot overstate the significance of someone giving a Survivor an experience. There are very serious concerns that go along with interacting with someone with a complicated health history. It is not a responsibility to be taken lightly.

My theory is that the best peeps (like D and R) aren’t thinking of the safety implications at first – they just respond instinctively out of human compassion. But it turns out that they have the knowledge and heart to take on the responsibility. That’s what Dylan and Diahanne did. Thank you so much.

 

PS.  we did great on Matt’s Shredded Grace fundraiser.  Now we’re looking to the future.  I’m working on the vid from one of the events last month.  Stay tuned.  Meanwhile, go buy the guys’ books.  It’s always nonprofit and will help Matt walk again.  They are HILARIOUS chronicles of Recovery.  I seriously could not make this stuff up.

Learning How on Amazon – *Always* NonProfit

 

#ShreddedGrace

IMG_8075.JPG

I am in full on Event Mode. Prayers appreciated bc I haven’t been feeling my best and this is incredibly grueling. Good news: Better breathing during #CoachR ‘s endless ladder/#squats regimen. 🔁 Bad news: My back is sad and my hips are grumpy today. I sat in my #wheelchair while I worked the table at the Gym this morning. I use the chair when I need to – I have a choice. Matt doesn’t. That’s why I’m doing this. Events on Sat 11 and 18. Please show some support by wearing some shades. Post a pic and hashtag #shreddedgrace – Thanks

505. 12/16 Update – 2 months and look what happened!!

31478000842_b676c29446_z

Dear Beloved, I sent my last update two months ago, launching my Trainer Books and Shredded Grace.  Look what happened!! (Click the image below to watch the video of Matt walking in the pool.)  This quick video was taken by Krissy,  (half of Mark and Krissy, family friends who have stood by Matt – Mark manages Matt’s medical funds and makes sure the money is being spent on stuff that works.  Spoiler Alert:  we’re funding this bc Pool Therapy WORKS. )   Matt is in the pool, working hard under the guidance of Pool Ninja Diahanne.   It’s EXACTLY what I asked God for when we began this adventure.  No, wait – it’s better.  Watch how hard Matt is working to pick up his feet.  Every step is a choice – a deliberate decision you  make to send the signal from your brain to your leg.

Click for Video of Matt walking with Diahanne!!!

Click for Video of Matt walking with Diahanne!!!

 

Your generosity is making this possible.  I was 30 when my brain bled – I had a career, fantastic insurance, and savings that fund my Recovery.  Matt was 16.  The transition from boyhood to manhood is tough enough, but when you add in a cataclysmic medical event….  We’re more than halfway to our very modest goal of a year of pool therapy.  For perspective, Matt has been in his chair for almost 5 years.  This is about access to care.  Please help:  Give Forward

I launched Shredded Grace two months ago all of a sudden bc I was anticipating medical drama and wanted to do it before the onslaught.  I asked you to pray about my hip (labral tears, potential surgery) and “XYZ.”  Update:  No surgery at present.  YES!!!!  Things got worse before they got better, but Coach Randy’s PT ministrations are working, and I am pleased with my current pain and functionality status and am in a position to regain strength and stamina and pursue more.  There were a gazillion tests for XYZ and zero answers. So Trainer David threw the gauntlet down AGAIN and challenged me to take care of basic things that had fallen by the wayside  (eating food 3x/day as opposed to 2x.  I know – this sounds ridiculous, but I’m working on baby steps :)).  Jessica Smurfette RD and my entire medical team have united in support of this goal and I am being observed closely.

Happily, I was able to do a few speaking events before the downturn, and I spoke and STOOD for the first time ever at a Conference in September.  I was so grateful to take part and very happy I did not fall down.  I did grip the podium really hard.  I have also been able to do more things around the house – simple things that allow me to hold on to something while doing the work, e.g. do dishes, fold laundry, etc.  I train so I have the breath and balance to speak and to live.  It’s working.

Do I wish there had been conclusive results to all those tests?  Of course.  But I was pleased that I’m now able to manage a process like this and was happy that my medical pros stepped up to the plate when I asked them to think outside the box bc I have a lot of factors in play.   I used my Medical Resume.   I didn’t get clear cut answers, but I’m confident we made an intelligent effort.So for now I’m content to take a little medical vacation, concentrate on my gait, exercises, and nutrition,  help Matt walk again, and enjoy these next couple of months with my family.

Uncertainty is a problem for me simply because there has been so much of it, starting with that time I went to work on April 7, 2011, and never came home.  But in the absence of definitive answers I’m happy in the things I know to be true no matter what.

31570246086_ee97c7d0d3_z

 

Wishing you and your family a joyful close to 2016 and a healthy 2017!

Ann/Ning

PS.  Check out my new Podcast!  Basically, I just sit there and crack myself up for 5-10 minutes.  Come hang out with me!  It’s the audio version of my blog.  Available on iTunes and Podbean.

iTunes Podcast
PPS.  If you’re new around here, I only invade your inbox once or twice yearly.  I am following in the footsteps of Daddy , who sent out email updates when I first got sick, starting with this one:  276.  Losing Heart.    Almost 6 years have passed and my emails are A LOT funnier than poor Daddy’s.

 

Learning How on Amazon - it's all Non Profit!!  All Online 2017 sales go to help Matt walk again.

Learning How on Amazon – it’s all Non Profit!! All Online 2017 sales go to help Matt walk again.

504. How to Create and Use a Medical Resume

31229334821_5eb0ab0810_k

I just got a text from my dear childhood friend and college roomate, S, whose baby sister had brain surgery for a tumor several years ago and who is being advised by her medical team to get another surgery done by EOY.  She has an active tumor and symptoms (particularly eyesight) have been aggravated lately.

She was looking for someone to ask a second opinion so of course I was like, I LOVE my neuro.  Go see her.  And then I cried my eyes out.  I still am.  But then I figured I’d publish this post bc this method has been very helpful to me especially as I’ve met new docs and sought their advice concerning specific issues or procedures.

Update:  No labral tear hip surgery for me, at least right now.  Coach R’s “Physical Therapy” is working.  He’s an Athletic Trainer/medical professional and all and knows what he’s doing (it helps that he’s got almost 3 years of data on my gait and is also a Strength Coach) but I maintain that he’s totally just making this up in his head.  Which is okay (I just like to say sassy things) since it’s totally working.  Sometimes I’m like, Owww!  and he just looks at me with the slit eyes like, We should do this anyway.  And one day my right leg FREAKED OUT so he just held the patella in place or something and made me finish the set.

If you’re wondering how Trainer D and Smurfette are doing, they are fine and dandy.  Except Animal Muppet yelled at me for a WHOLE HOUR a couple weeks ago bc he found out I had stopped eating food again.  :/  Quote from yesterday:  How are your neurotransmitters?   Seriously, D – I am so embarrassed for you right now.  Who asks that sort of thing?  I don’t even know what that means.

Meanwhile, I’m much more interested in the fact that Smurfette is rocking a new long bob after donating her curls to Locks of Love.  High 5,  Smurfette!!

I’m also starting a podcast.  I will launch formally when I send my next email update.  But check it out on iTunes.

podcast-cover

Back to the Medical Resume thing:  Mine has become much shorter  over the years.  Assume the doc will only glance at it briefly.  What do you want them to know, and what do YOU want to know?  Go in there with a goal (e.g. Information on Pros and Cons of X, Images and Tests, advice on how to approach a problem) and signal intent to pursue this seriously by managing your own time and the doctor’s schedule by accomplishing your agenda and getting what you need with a minimum of fuss.  If you lay it out on paper they know you mean business and can serve you better and faster.  Also, bring a friend or family member so you can compare notes later.

This image is an example – it’s what I used for my Ortho Surgeon.

I know, I know – the majority of the population will not need a Medical Resume.  But there are some of us who are so EXCRUCIATINGLY COOL that we will have a template we customize for each new doctor.  This is a tool you can use to help yourself get the level of care you want.  It’s also a great idea for a family member of friend to do for a loved one who is not able to create one for him/herself, and also for people facing a new diagnosis.  It keeps everyone on track at the appointment, especially if you’re new at this and nervous, or an old hand…frankly, I’m ALWAYS nervous.

Note to D:  This is YOUR body and your decision.  The best thing you can do is get insight from professionals.  It’s scary and it stinks, but be guided by their expertise even if it’s not what you want to hear.  You want the best outcome for the long term.  I’m sorry.  SNIFF.  Big Hugs and lots of prayers for you and your whole family, xoxo ning.

This Walk to the Car took 5 Years

IMG_4626.JPG

The first time I picked up a kid it was 18 month old Ezra. It was soon after I came home and I leaned against a wall and picked him up but totally overshot bc of lack of spatial awareness and motor control and bonked his little head against a cabinet. I was horrified but he was completely silent and just rubbed his noggin silently and let me hug him.

5 yrs later we were leaving church and little brother P2 wasn’t wearing shoes. (I’ve been on vacation with E and R.) “But Aunty Ning Ning, if I walk on the street my feet will get dirty.” I was the only adult around so I picked Peter up and walked to the car. It was only 30 seconds, but I waited a LONG time to be able to do that.

RecoveryLand has been rough lately and my symptoms have gotten aggravated. But moments like this remind me why I spend so much time and energy training. I train for real life – weekends, holidays, and vacations…and for walks to the car with a squirmy kid so his feet don’t get dirty. Not on my watch, P2. Aunty Ning has a thing about feet. 😏😜

503. The Eye of the Tiger

24946415633_375f74cda9_z

It’s Monday!  Welcome to the new work week.  I confess, I’m exhausted – and we haven’t even started yet.  But I’ll rally – it’s a good thing I’m a Tan.  We have the Eye of the Tiger.  🙂

Thank you for praying for Sassy Smurf.  She is doing well in her post-seizure recovery – no additional episodes, PTL just adjusting to the new parameters and deciding what to do next.  Please continue to pray, and for me, too.  Recalibration II is encountering some wrinkles.

PS. Are you on Instagram? Follow me @iheartrecovery

Learning How on Amazon - it's all NONPROFIT!

Learning How on Amazon – it’s all NONPROFIT!

500. Happy New Year!

23965094461_6d862409f1_z

Hi, everyone – I’m just checking in to wish you all a Happy New Year and tell you how crazy and fabulous it has been.

  • Mom Bjorlie is doing well at home, PTL. Thank you so much for praying for her – and please continue to do so.
  • Mrs. Ridgely is in hospice for real this time. Please pray for comfort for her and her dear family. I’m glad for her, but sad for all of us.

I took the picture above the weekend after Mom Bjorlie got super sick. Ruthie had flown to MI to be with the family, and Mommy had gone to Ernie’s house to help wrangle the Wild Ones. Ruthie traditionally takes a #beforechurchtans picture on Sunday so I took one on her behalf. Except it was just one Tan since Daddy was unavailable for the photo op.

But Daddy and I took good care of each other while Mommy was away! I took a series of hilarious surreptitious selfies as proof. Here we are in the car. (We are parked and he is doing something on his phone. Don’t worry, he’s not sleep driving).

23751983970_3cab0f486d_z

That weekend I flew solo at the Christmas Tea. Thank the Lord it went well! I shared Mrs. Ridgely’s story and some of my own. Here is the audio. I think it’s 26 minutes or something. See if you recognize the laughing voices J. I also explained why we skipped from volume 1 to volume 4 – and explained to the guys that they came to Tea, too, even though they’re male!! (Their books will be published sometime in 2016. I haven’t actually finished Trainer D’s, which is why his is still a T-shirt.)

23421228603_3fe8a83ecf_z

And then Mommy came home and we flew down to see Boo Boo and Co. YAY!! I was thrilled for the opportunity to speak at the Tea here, too. Despite being very ill for the weeks leading up to tea, Boo Boo delivered a beautiful and bountiful Tea Time that we all enjoyed thoroughly. Ninja Mommy was on hand to help out and I’m sure it was hilarious and gratifying to see the pattern of hospitality she established for us replicated in Boo Boo’s unique way. Yeah. Let’s call it “unique.”

23419445704_09f5abb1f0_z

I have been lobbying for a dog but I am getting no traction re. my adoption plans. Mommy’s like, It doesn’t matter what the dog looks like, bc Tippy ain’t happening.  This was Boo Boo’s 2 cents:

24021558996_6d06ccf4e8_z

So I’m spending quality time with Skittles.

24047664905_539cd74910_z 23965095431_37f9b9a39b_z

And I’m doing my duty. This is me stretching with Coach R’s rope after a “run” at the Southern Gym and me with the Total Gym here at Ai Ai’s. Trainer D was thrilled to see me and the Total Gym, btw.

23679812319_eb50b6896b_z 23939982432_aa0d37f721_z

BTW, all this Training has totally paid off. I went with Boo Boo to her gym and her teacher remembered me and said I was so much better. That’s the consensus. Another friend at church told I had “a focus” while speaking at Tea this year that I didn’t have a couple years ago, and my voice was louder, too. PTL. This is exactly the effect I was going for. I’m able to do a lot more physically and mentally – I still have to spend a lot of time sleeping and resting, but I know when and how to rest better, and am less tempted to try and muscle through a situation because I’m more aware of my limits. Basically, I’m learning to use the “active” time I do have more effectively.

Before she left, Mommy told Boo Boo like 3x that Ning needs to buy some clothes. ROTFLOL. So Boo Boo helped me buy some clothes and Mommy will be happy bc they are not all polar fleece vests. I also decided it was time to buy new sneakers. I have bought far fewer sneakers in 2015, whereas I bought ~4 sets of 3+ in 2014 bc the toe wear was so uneven from my gait. It’s getting better! Or I’m getting cheaper. You pick.

23939505042_23ec2b7a3f_z

Just kidding. It’s getting better. Thanks, guys!

And it really is just guys right now. I’m on hiatus from Ninja CMD bc I’m not doing great getting poked, and Gen just stopped doing massage. SNIFF. But I’m glad for her bc I’m fully supportive of people making life choices that are good for them and their family, and I hope she’s able to enjoy concentrating on surgeoning only for a while. And she’s so sweet, she’s like, if you need help, just say so and I’ll come help you. Sniff.

So that’s what’s been going on. I came across a few blog posts from the last couple years as I started Training with the guys and found Gen. Wow – it was crazy. I forgot how much adjusting my body had to do to get to this next level. But essentially, they got me through it. We made progress and pulled back as necessary. Smurfette intervened when things got rough dietarily, and now things are better although definitely still a work in progress. As I made gains in “running” in my machine I felt my lung capacity increasing to the point that I really did feel super loud while speaking at Tea this year. But I also felt major discomfort in my hips even though I was “running” at a relatively low % of body weight as I increased my speed. But now I’ve come to a compromise – I run faster, but only do intervals, and my hips are happy. They, and other body parts, do occasionally get very grumpy, but I have many more self-help techniques in my toolkit to use, and when I really need assistance I know I can call in the big guns.

23102221985_682a63270c_oThe biggest thing I’m thankful for right now, though, is that I’ve been sleeping so much better. I had to pull the plug on my blog etc. bc things got rough with everything happening, and Uncle Bus, then Aunty Haigouhy, and then Mrs. Ridgely, and then I started having super awful dreams about 6 months ago that required intervention on multiple levels. Plus, I realized after Tea here at Boo Boo’s that I haven’t really paused for breath since Mrs. Ridgely was diagnosed. I immediately consoled myself by writing her book even though it was so sad for me (FYI, I haven’t read it since I wrote it, although the word on the street is that it’s really good) and my arm was hurting like anything. I’d just show up and stick out my right forearm and ask my people to “please fix this” so I could finish typing. But I slept for days after tea and realized I needed the break. And then I realized that I’m not having those awful dreams that have troubled me for so long. When I say “awful,” that’s an understatement. If I have shared any details with you, thank you so much for your prayer support in this matter. I still occasionally have excruciatingly sad ones that are tinged with reality but I’m learning to embrace the sad. Or at least to live with it peaceably. Because sad things happen to all of us – and I know for sure that the sad things that have happened to me have made my heart bigger and more compassionate.

I Kings 4.29 And God gave Solomon wisdom and understanding exceeding much, and largeness of heart, even as the sand that is on the sea shore.

But while sad things hit me pretty hard, happy things do, too. This year has been rough, but I have SO many things to be thankful for.

Happy New Year!

 

499. A Thanksgiving Update from Ann/Ning 2015

23126190865_7873368483_o

It’s been a happy year, and a sad one, too. 

It was sad because since I wrote last year’s Thanksgiving letter we had to say goodbye to some very dear ones I considered family.  Dan UncleUncle Bus, and Aunty Haigouhy.  Sniff.  Sniffle.  
 
But it was also happy in that I found out that saying goodbye to them gave me a chance to test out my new post-injury robustness level, and I have not melted into a puddle entirely.  In fact, I enjoyed 3 entire months of low or no pain!!!  I’m strong enough for this on many levels, and I thank God for His grace and for giving me a Team of individuals who are both kind and exceptionally skilled so that they are equipped to help me through the day-to-day aspects of living in a body like this, to pursue higher levels of health, help me reach my goals, and keep me laughing along the way.  
 
This is truly one of the most wonderful miracles of my Recovery.  I couldn’t have imagined people like this.  Individually, you might call my connection with this kind of professional help a happy coincidence.  But when it kept on happening with astonishing regularity and with little or no effort on my part, I gave myself permission to have very high standards since collectively Team Tanimal has the hand of the Lord written all over it.
 
17384558241_e0d2a08d78_bThe consensus is that it has been an indisputably sad and stressful time, and it stands to reason that it would manifest itself somehow.  And although I have done well in some areas, my PTSD got aggravated.  If you recall, I was diagnosed with Delayed Onset PTSD early this year. But the great thing is that I have multiple watchful people who keep tabs on me, and the right kind of professional help for this specific problem.  The end result is that although it’s been rough, I am SO much more comfortable in my own skin than this time last year.
 
It’s a good thing, because I’ve had to armor up for the latest engagement.  My dear friend, Carol Ridgely is sick.  Mrs. Ridgely has an aggressive cancer so I consoled myself by writing a book and asking her to be my coauthor. She is totally hardcore. It’s like THROWDOWN: Carol Ridgely. God saved Carol from an awful life on the street and a heart full of hatred. He saved me from a lifetime of anger and bitterness. We’ve been tight since she got a liver transplant at Georgetown U in ‘99 when I was a freshman.  It’s my privilege now to tell her story.  I incorporated some original source material she wrote back in 1992 right after she became a Christian.  One of the best things about writing is that your really have to decide if you believe something is true before you write it down for public consumption.  This process has been so encouraging for me. 
 

It's NonProfit!! go to Amazon

It’s NonProfit!! go to Amazon

I know I say this every time, but please forgive me for my appalling correspondence skills.  I’ve had to pull the plug on a lot of things out of necessity.  I haven’t blogged regularly since the summer because I needed to prioritize eating sleeping, and breathing, but I started book writing in the interim.  I was working on Learning How volumes 2 and 3 (starring Trainer D and Coach R) but when Mrs. Ridgely was diagnosed I bumped the guys (thanks, guys!) and skipped straight to Volume 4: Learning How to Sing a New Song. It’s what I would have said to her if stamina weren’t an issue and we could just sit around for hours and talk. It’s about what happened to her, what happened to me, how it’s been an arduous road, but how it makes so much sense and how the path has been strewn with marks of indelible grace…And it’s about how we prepare for life, and prepare for death.
 
As always, everything is all NonProfit. 
 
Thank you for your prayers and support. 
 
Love, Ann|Ning
PS.  Happy Thanksgiving from the Tans!

PPS.  Now that Mrs. Ridgely’s book is published I’m hibernating again.  Bye for now!!

492. I Love Mondays

492. I Love Mondays