360. Postcards

 

Since I’ve been traveling I send my peeps postcards to let them know how I’m doing. They told me they wanted to know I survived Oregon and I’m also sending Trainer D and Coach R my ORFR stats. I print pictures in the 4×6 size at Costco, stamp them, and send them off in the mail. Postcards are my favorite no-hassle way to keep people informed since I’m admittedly challenged in the correspondence area. It’s easy on me, they receive the relevant info, get to look at a fun pic, and happily move on to the next thing competing for their attention.

Although I need people with mad skills (I have neither time/money for anything else) I strive to make it as easy as possible for my providers to work with me. In addition to making our sessions entertaining (I tend to choose people who make them entertaining for me as well, although often unintentionally) I also provide timely reminders regarding notable occasions, e.g. Mother’s Day, Father’s Day etc. This is one of the little things I can offer along with the free laughs. 🙂

The picture up top is one of the designs I’ve used during this trip. Below is what I wrote to CMD. I wanted to make sure she knows I’m doing my duty. While I’m resting on the acupuncture table she goes to her office, consults my chart, and then returns to the treatment table to tell me that based on her calculations I should have finished my supply of herbs and ordered more already. Then she goes out front to talk to Mommy regarding if I’m taking my medicine as I ought. FYI she called me a baby last time I saw her. Not “baby” as a term of endearment – “a baby” – under her breath. Mm hmm. I told you she keeps me on a real short leash.

343. Strength and Honor

I have gotten to the point where I hesitate to tell CMD and Trainer D that I’m hurting bc I know what happens next. I’ve actually taken to hiding my hands in the folds of my shirt when on the acupuncture table in the fond hope that she’ll forget about them. But last week I was hurting so much I decided that I shouldn’t try to evade treatment and I should take the help where I could get it. My next appointment was at The Gym so I emailed Trainer D and asked him to spend some time specifically working on my problem areas and educating me about my muscles.

The first time he really got into the Mr. Miyagi thing (formerly he had primarily used an elbow but made cryptic references to other methods) was a couple of weeks ago. “How’s your hip?” he inquired. “It’s kind of bothering me, but I’m not really caring right now,” I said. That was code for Ain’t nothin’ need adjusting over here, thanks. Let’s lift some weights.

He didn’t get, or pretended not to get, my meaning. And so both sides ended up getting treated. I then voiced the growing concern that my shoulders are completely different shapes and asked if he could fix that. I was thinking we’d do strengthening on the left. I was wrong. The immediate plan of care was to break down the weird muscle tissue that has taken up residence on my right shoulder since it has been compensating for my left side’s weakness. The muscle tissue build-up is abnormal enough to be of great interest to Trainer D, who is fascinated by this sort of thing. He actually had me move from the table to a chair at the Training “reception” desk so he could achieve greater leverage. That weekend I kept on checking to see if there was a handprint on my back. Ouch! I mostly felt the pain and just had to accept his reassurances that this was for my good on faith and based on past experience.

But a couple weeks later on Thursday I couldn’t sleep except for about an hour around midnight. Part of the problem was that my right shoulder was really bothering me. It was so bad I immediately emailed N2 (my new neurologist) for a new script and asked for help at the Gym again but prefaced it with, Hey, D, I know I asked you to do this and all but if I pass out we’re going to have a very long discussion when I come to.

The AED [defibrillator] is right over there, he informed helpfully.

[Thanks, Buddy.  So glad to know you’ve got my  back.  Incidentally, I verified that he knows how to use one.  “With my eyes closed,” was the comforting reply.]

The end result is that I have some residual soreness but overall my shoulder feels SO much better. It was the right decision to ask for help. Maybe I’ll stop hiding my hands at acupuncture…Well…maybe I’m not ready for that yet.  [Update:  I went to CMD Monday morning and hid my hands shamelessly.]

One day when we were busy building my good muscles instead of breaking down the bad ones Trainer D used the phrase “strength and honor” a couple of times on me (presumably from his mental database of motivational phrases – thankfully, this one was in English so I actually understood it). I couldn’t help laughing out loud bc I recognized the line from Gladiator and it has always tickled me pink. It’s what the gladiators say when they grasp each other’s shoulders right before they walk out into the arena.

I love that “strength and honor” are the two values that made it into a major Hollywood film as the motto of extremely manly men who are forced to fight for their lives. It’s funny to me because I think of it every time my shoulder hurts and remember that the phrase originates in Proverbs 31 – the chapter about ideal womanhood.

“Strength and honor are her clothing;
and she shall rejoice in time to come.” (Proverbs 31.25 KJV)

Much has been written on the topic of Biblical womanhood from all kinds of perspectives. But for me the fact that “strength and honor” are valued is the bottom line.

169. The Treatment of Women [Why did people like *Kate & Leopold?*]

331. All Smiles

Last week I was on the treatment table at acupuncture and CMD said tentatively, “I know you’re scared…but it would be better if I worked on your hand…”  And then she gave me a very winning “trust-me-I’m a professional” smile.

I immediately started whimpering and wriggling to indicate, “No” and rubbed my left hand vigorously with my right to indicate that I have been doing the acupressure self-massage she told me to do in lieu of the actual poking.  (That particular limb hurts a lot when it gets poked.)  She laughed at my reaction and I began laughing, too, which was good since it distracted her from any more talk of working on my hand.

“Oh….” She said, leaning closer, “I see your face needs work.”  My facial weakness has improved, but when I show more emotion my mouth gets more crooked.  So she immediately set about unwrapping new needles and putting them in my face.  I close my eyes for face work since she’s told me it’s better if I don’t look anyway.

If I smile for a picture my mouth is reasonably symmetrical, but when  I just smile during the course of the day it can be quite lopsided.  I don’t really care, though – the smile is a low-priority symptom in the grand scheme of things.  I would rather attend to the weird numbness on my face, anyway – but hey, if we’re prioritizing I’ve got a whole other list of symptoms I’d fix first before that.

I’ve just assumed that my smile will improve as a byproduct of time and acupuncture.  As the right side of my face has improved, though, I’ve appreciated its restoration as it caught me by surprise.  One random day I touched the right side of my face and told Mommy, trying hard not to cry, that I had forgotten what it was like to have a body part that feels like this.  Honestly, it’s the most “normal” feeling part of me.

It still doesn’t function 100% in the smile department but thankfully I’m surrounded by a bunch of people with beautiful smiles that I appreciate liberally. I went through my camera pictures trying to find my favorite smiles and they were disproportionately Peter-heavy!

317. Quizzical

The Diagram in CMD’s office

For the first time in almost three years I’m being asked to process information and reproduce it verbally upon request. Well, actually, no – I had to do this sort of thing for my neuro-psychs during cognitive evaluations. (Heh, heh. Try again, buddy. Heh heh. Try again.) But the context I’m thinking of now is a non-rehabilitation environment. When I go see Trainer D it’s like a quiz show. In the future I have hopes of filming a new reality series on my phone – we just need to recruit his trainer friends to be cast members.

But for now I’m the only contestant on the quiz show we like to call Personal Training. Trainer D will talk, use some big words for different muscles, point to parts of the weight machine, and then ask, “So what are you supposed to concentrate on?” If I’m having a good moment I’ll offer something like, “Ummmm…don’t arch my back?” More often I’ll cast my eyes blankly about the room and say something like, “Umm….don’t fall down?”

Happily, Mr. Miyagi is knowledgeable but not picky. He will accept whatever answer I give him graciously, and then he stands nearby to make sure my arm doesn’t snap off etc. Or at least he has promised to catch it on the way down. A few weeks ago he was doing the usual, can you feel XYZ muscle firing? and I told him, “You’re asking for a whole lot of self-awareness…” (I didn’t fall down, did I? What more do you want from me?!?! 🙂 ) Self-awareness is not my forte presently. Oftentimes I can’t sense things properly and my vision and hearing can play confusing tricks on me. When I do sense things I’m not always able to judge whether or not an activity is an appropriate challenge –e.g. tall kneeling – I think it’s supposed to hurt that much. So I often need my peeps to be able to intuit that I’m in distress or I just need a rest, since it’s not likely that I’ll be able to offer such feedback on my own.

127. How to Enjoy the Rehabilitation Process

In return, they like to know that I’ve absorbed the information they are sharing with me – e.g. quiz time at The Gym. CMD also likes quiz time. Leading up to my summer vacay she’d ask me to demonstrate the acupressure facial self-massage techniques she showed me so I could do them while I was away. I got it wrong three weeks in a row. I’d be rubbing my face, touching what I thought were appropriate points, and a couple minutes in she’d be like…Okay…you can stop now. And then I’d go study the diagram in her office some more.

These days no one’s going to argue with me if I say, “My head hurts and I’m going to go lie down.” Indeed, I often omit the “head hurting” part because it only twinges a bit, and I do not want to alarm Tanpo since I know the danger is past but it is still fresh in his mind. One of the blessings of being cognitively intact, though, is the ability to be stretched mentally. Sure, it’s funny when my brain is floppy and I can’t remember anything other than “don’t fall down” and I forget how to do the right facial massage on my crooked smirk (PS. It’s getting better!) It can be a little frustrating, too, when I can’t process all the information I want to, but it also forces me to boil down everything getting tossed into my pot of Recovery Soup so it’s reduced to the most salient points: e.g. don’t fall down, use your core, and breathe.

149. Why I Choose Therapy

This is why I surround myself with experts in RecoveryLand – they have special knowledge that I need. It took me a while to figure that out, but I’m fully bought in. I have been blessed to work with several highly proficient and truly caring practitioners since I got sick. My method has been simple: once I understood the importance of what was happening and the value of a skilled professional, I started asking God to lead me to the right people. (Before I thought of asking He just gave me people I needed even though I didnt know I needed them.) This method actually works in every context, though. It’s always a good idea to build a network of individuals who are smarter than you are, especially in areas you wouldn’t call your “strengths.” You never know when you’ll be calling on their expertise.

56. Expertise – What are you good at?

149. Why I Choose Therapy…

…and trust the Pros to help me recover.

Let me clarify in case anyone ever comes across this post in their internet research:  When I talk about “Therapy” and “Recovery” I mean the kind of rehabilitation you receive after a stroke, car accident, joint replacement, etc.  I am also referring to alternative medicine, but I couldn’t think of a short and comprehensive title.  If you are looking for information on substance abuse recovery or psychological therapy, please do keep reading as this might still be helpful, or at least interesting.  Also, my condition is not permanent (kind of – jury’s still out, somewhat) and non-degenerative.  One more thing – my immune system is not deemed to be compromised, so do not worry if your children/dog sneeze on me (I’m talking to you, B&G).  Not that I’m inviting sneezes – it’s just that you needn’t worry about your kids wearing surgical masks while in my presence.

When I first starting going to The Place (ARHM, my first outpatient rehab hospital) I was still getting accustomed to RecoveryLand’s layout and it was so early in my treatment there that I hadn’t yet been paired up with A (6).  So I asked E (10  – remember, my numbering system isn’t chronological) if I was just going to get better in time and why I had to do therapy.  Well, she said, it’s likely you’re going to heal with time, but until then…[what do you do?]

1.  Therapy is about living life.

As I prepared to be discharged from The Place after ~6 months, I had major anxiety over getting “kicked out.”  A (6) explained to me that there was nothing to be nervous about; the idea was that I’d eventually return, and that therapy is about learning to live life.  I didn’t take the “living life” concept seriously until I really thought about it for months after, and he was right.  (Side note:  I hate it when A’s right!  I said that to Mom in the parking lot after receiving another medical vote for a recovery that would be less than 100%.  Okay, fine.  Let’s go for 99.9..I extrapolated this idea from a convo with Je. PS. Props to docs who have to say unpopular things.)

It’s true in that I practice what I learned in therapy as I sit in a chair, eat a meal, type this at my computer, and basically, while I do everything else when I’m awake.  Yes, I learned how to sit on a mat in the gym, and how to get up from the gym floor if I had a fall, but I sit, fall, and get up in the real world.  And I go to the store and eat at restaurants and climb the stairs at church.

What E said to me was absolutely on target in a thought-provoking way.  Maybe I would get better by just waiting this thing out.  But in the meantime I still want to get my own cup of water when I’m thirsty, and venture out into the community.  So I’ve learned the skills that help me to do what I want to do in the real world by practicing them in a controlled environment under the supervision of licensed professionals. There’s also a huge achievement factor in RecoveryLand – you have to set goals in therapy, and the point is to figure out ways to reach them, even if it takes a while.  Progress is closely monitored and systematically measured so you can tell if you need to adjust your strategy, or if your plan of attack is proving to be effective, it’s easy to celebrate.

2.     I’d rather be doing something (even if it doesn’t work) than nothing.

Have you seen my medical disclaimer (click on the link and scroll down)?  I really do stand by that – e.g. there is a school of thought that says, I love Vision Therapy – there’s no other way to train the brain to “see” the best ways your eyes can see.  There’s another school of thought that simply says, I don’t believe in that – that doesn’t work.  Reading is difficult for me at present, but when my Eye Doc told me to go home and research VT before deciding to go this route it took me two seconds to understand that this course of treatment is a source of debate, although I have chosen to immerse myself in an environment of pro-VTers.  So yeah – everyone needs to do his/her homework and decide what the best course of treatment is for him/her.

At my next appointment I told my Eye Doc, I’d rather do this even if it doesn’t work than nothing.  I’m ignoring the question of “does it work?” at the moment and just saying, Seriously?  Sitting on your hands and hoping for the best is an option?  Well, it’s a bad option, IMHO.  (Side note: Remember that my condition is in flux.  I am not referring to dealing with a permanent condition. Learning to live wheelchair or prosthetic-style = huge heavy lifting.  )  I’m NOT saying, God helps those who help themselves (that is not scriptural, BTW), I’m just saying that my personality does not lend itself to inaction.  I need the idea of goal-setting and a professional to break achievement into baby steps.

So I chose VT with a well-rounded view of the discipline, and I was encouraged to pursue the necessary research by my VT Practice, and I recommend research to you as a good course of action before pursuing any kind of treatment.

Admittedly, I chose acupuncture with somewhat less (okay, zero) research.  I just went to CMD based on my Uncle/Aunt’s recommendation, and the vague knowledge that Chinese people having been doing this sort of thing for a long time and people all over the world love acupuncture, so I wanted to try it, especially since I had nothing to lose.  Like I told CMD on day 1, my primary goal is pain relief (check!  Goal met), any other relief I can get from her ministrations I will treat as a welcome surprise.

3.     Therapy and Alternative Medicine have changed the way I think.

I’m still ignoring the “does it work?” question.  Well, let me list the following items – these may be interpreted either as improvement due to treatment or coincidence, depending on your persuasion:

a.      Vision:  My neurologist saw me 3-4 months after I started VT.  I had not seen her since starting treatment.  She immediately noticed that I was using my eyes to look at her while talking in a way I had not been able to before, and that my nstagmus (jumpy eyes) had improved (except when looking up).

b.     Vision:  My tests (e.g. those crazy looking space goggles) indicate my left eye is “waking up” – meaning that I am using my eyes in a way I was unable to pre-injury.

c.      CM:  The only relief I’m willing to state emphatically (since I’m naturally tentative about these things) is that I have much less pain in my left side since starting to see CMD.   Other things I’m still processing but have happily noticed:  greater mobility in the right (weaker) side of my face, more freedom of movement in my left hip, overall improvement in my gait.

 

Regardless of how I answer the question, “does it work?” I am fully confident in saying that I would not have played the piano at church on Sunday had I not been a VT patient.  My Eye Doc asked me to set a goal, so I did – being added back in to the roster by April (check!  Goal met).  I got to choose any goal I wanted to, so I chose a very functional activity that impacts my life and it happened because there’s a practice full of Doctors and helpers down the street from me who all thought that yes, it would be perfectly natural and attainable for me to play for a group and look at the hymn book like I used to do.  So I did the exercises I didn’t like and made my cryptic notations on my music sheets and practiced because being in the VT environment made me think it was possible, and further, a natural next step in recovery for me.

I told Mom last week that one day I’d come to a curb and step up/down it without thinking…but not today.  Today I still need to think hard about navigating curbs, but this and so many other things (even something as simple as using a public restroom) are no longer barriers to me participating in life since I know how to approach all these little individual tasks since doctors and therapists taught me how.

I also am even more cognizant of what I eat since CMD can tell all sorts of things by just looking at me.  Not kidding.  I feel like she’s got spy cameras in my kitchen.  But this is a good thing, mind you, given my body issues at present, and also because I definitely need the highest quality fuel right now.  And I’m able to cook more now since  I practiced at The Place and have examined the faux diner at Planet Rehab, and consulted knowledgeable people on how to do this.  I occasionally see patients cooking in the kitchen when I pass by during PT, so I figure that if they can do it, so can I.

Also, the fact that CMD shows zero surprise when I tell her this or that feels better is good for me since she expects improvement, so I feel more optimistic.  Do you remember when I wrote 131. My Expectation is?  The day after I posted it I remembered one of my favorite entries in The Valley of Vision – a collection of Puritan Prayers & Devotions.  This is “Repose” –  p.298 in my version, gifted to me by Drs. M&S when they stayed with me during my Happy Summer of 2010 in Oregon.

 Repose – from The Valley of Vision

Heavenly Father,

My faith is in thee,

My expectation is from thee,

My love goes out toward thee,

I believe thee,

accept thy Word,

acquiesce in thy will,

rely on thy promises,

trust thy providence.

I bless thee that the court of conscience

proves me to be thine.

I do not need signs and wonders to believe,

for thy Word is sure truth.

I have cast my anchor in the port of peace,

knowing that present and future

are in nail-pierced hands.

Thou art so good, wise, just holy,

that no mistake is possible to thee.

Thou art fountain and source of all law;

what thou commandest is mine to obey.

I yield to thy sovereignty all that I am and have;

do thou with me as thou wilt.

Thou hast given me silence in my heart

in place of murmurings and complaints.

Keep my wishes from growing into willings,

my willings from becoming fault-finding

with thy providences,

and have mercy on me.

If I sin and am rebellious, help me to repent;

then take away my mourning and give me music;

remove my sackcloth and adorn me with beauty;

take away my sighs and fill my mouth with songs;

and when I am restored and rest in thee

give me summer weather in my heart.

PS.  Thank you for your prayers and support for my piano playing adventure.  It went well (without incident).  More later.

118. Let’s do the fiery cup thing! (Acupuncture & Cupping, Anyone?)

Joshua at Class –  Feb ’12

I have made reference to Acupuncture Ed and what Acupuncture is supposed to look like, but I haven’t actually written about my experience thus far.  If you are considering Chinese Medicine, here’s my take on it.   Please just be aware of my disclaimer (click on the link and then scroll down to “Please note, esp if you’re sick”) and make sure to do your own research and choose the treatment that is best for you.  Here’s something I learned in my own research to get you started: an important designation to look for is “L.Ac,” or “licensed acupuncturist.”  Wikipedia told me that in the U.S., “L.Ac.s generally receive from 2500 to 4000 hours of training in Chinese medical theory, acupuncture, and basic bioscience. The amount of training required for healthcare providers who are not L.Ac.s varies from none to a few hundred hours, and in Hawaii the practice of acupuncture requires full training as a licensed acupuncturist.”  Fascinating, no?  Apparently there’s also a Master’s Degree you can get from the national commission, and there might be other desirable designations to look for, but in my case, I needn’t have worried since CMD has all sorts of professional recognition and a lot of street cred, too.

I started acupuncture a couple of months ago.  I had often thought of it since I got sick but this is the first time during my recovery that I was able to prioritize it.  I was too unaware of life in general when we first came home, and I couldn’t bear to go anywhere besides the doctor’s office when my leg got bad this past Summer, but now I’m in a position (emotionally and physically) to choose my own course of treatment, and I chose this.  It has almost been 2 years since my injury, and the sooner you start treatment the better – so I know I’m a little late to the party, but better late than never, right?  I found my CMD (Chinese Medicine Doctor) since she helped my Uncle (JE’s Dad) when he was here visiting from Malaysia and had a really bad back problem.  :/.  But the acupuncture really helped.  My Aunt also went since she was having knee problems, and got relief from those symptoms.  They referred me to CMD and it was an excellent move – She’s got umpteen years of experience gained on 3 different continents and in settings ranging from hospital to private practice and it wasn’t hard for a newbie like me to tell that she knew what she was doing.  Otherwise I wouldn’t let her near me with needles/fire/electricity.

That’s right, I said “fire.”  Not only does CMD do acupuncture, she does cupping, moxibustion and herbal medicine.  Cupping and moxibustion are where the fire comes in.  She’s only done moxibustion on me once, but cupping happens pretty much during every visit.  During my first appointment I was lying face-down on the treatment table so I couldn’t really see what was going on.  Then I heard a large ripping sound.  The cup makes the ripping sound when it comes off of your skin since the vacuum created by burning up all the oxygen in the cup prior to putting it on your skin is being broken.  “What’s that?” I asked. “That’s cupping,” said CMD.  “Ooh, this is like Karate Kid with Jackie Chan!” I informed CMD.

She hadn’t seen it.  So much for my pop culture reference.  I am talking about the recent (a few years ago) remake of the 80’s classic.   Jackie Chan is Mr. Miyagi to Jaden Smith’s Daniel-san.  When Dre (the karate kid) gets pummeled by a bunch of bullies early in the film, Mr. Han (Jackie Chan) rescues him and does cupping to relieve Dre’s pain.  At the end of the movie there’s the classic tournament scene where the Bad Teacher tells his student to break Dre’s leg.  Dre ends up lying on a table and tries to convince Mr. Han to help him return to the tournament to fight.  C’mon, Dre urges, let’s do the fiery cup thing!  But Mr. Han is distressed and wishes Dre would just concede and not end up with a more serious injury.  Why, he asks, does Dre feel so obliged to fight?

Dre pauses for a moment and tells Mr. Han, “Because I don’t want to be scared anymore.”  No matter what happens (win or lose), Dre just wants to be able to leave the building without looking over his shoulder for the rest of his life.  Jackie Chan is convinced by the boy’s answer to get out his cups, light a flame, and then Dre limps back out to the mat to win the fight and the respect of his tormentors.

So that is how I found out what cupping is.  I think cupping has gained more of a mainstream presence lately and acupuncture is already there.  If you’re wondering, the needles usually don’t hurt.  If I make the slightest sound of discomfort, CMD immediately notices and adjusts accordingly.  This usually happens in the non-often event that a needle touches a hair follicle.  Otherwise, I feel a tiny prick (like a rubber band snap) when the needle goes in, and then I can forget about it once it’s there.

I have extremely uncooperative veins.  I tried to donate blood once at Intel and I’m not kidding – 3 or 4 people came and went on the opposite side of the Red Cross bus while I was still lying there, trying to squeeze out the minimum unit for donation.  A RCWorker even had to hold my arm for the last 10 minutes to aid drainage.  In the hospital, putting an IV in was routinely difficult.  I used to amuse myself during breaks at The Place by counting the holes in my wrists, but I gave up after a while since there are too many holes and I didn’t want to strain my eyes.

In general, I don’t like being poked (example:  being scoped by the PDG/ENT), so it’s heavily ironic that I have willingly signed up to be poked A LOT – 3x/week, and more recently, 2x/week.  I am willing to do this since I think treatment has had positive effects thus far – give me a while to solidify the results and I’ll report back.  After the poking, CMD will usually attach some leads from a little box that generates an electrical current to the needles.  She’ll find a level suitable for me and then I get to rest.  I like that part – you get to lie there while the needles etc. work their magic.  I get good naps in – that’s what I mean when I say I’m usually able to forget about the needles.

Just so I’m aware, though, CMD will remind me if I have needles in my head/arm etc. so I’ll be careful not to fall into such a deep sleep that I touch them accidentally.  (Side note:  Your experience with acupuncture might be more of a needles-only proposition.  Since I have quite a few issues, though, I think I’m getting the whole enchilada.)  I’ll often do the tricks NP4 taught me to help myself relax and not get stressed out by the treatment.  Relaxation is critical for me since, like Dre, I don’t want to be afraid anymore, either.  What happened already happened – and whatever happens in the future will be okay, too.

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13B. Worst Case Scenario

Ed says… (2 of 2)

..I am silly for thinking that the 2-hour school delay would apply to medical appointments, and this is what real acupuncture looks like.

Ed says… (1 of 2)

…he’s glad I’ve started acupuncture but he doesn’t think it qualifies me to practice on him.