Thanks so much for praying! My x-rays indicate that my bones look good – now I just have to wait to be told if there’s anything to be done about the not-bones. :).
Thanks so much for praying! My x-rays indicate that my bones look good – now I just have to wait to be told if there’s anything to be done about the not-bones. :).
To: Trainer D
Re: My joints are grumpy.
So…..my ankle might have gotten a little worse. What was a very minor grade 1 last week is now a “moderate” sprain that Gen wants me to wear a brace for. She also popped something back into place – it was gross. It’s not constantly painful or anything but my foot was really dragging on the AlterG [on Thursday]. My elbows are also acting up. And my vigilant PCP wants X rays of everything just in case so I told her while she’s at it can she please also do the knee and the hip bc I’d like to get the green light again to exercise (or at least that’s my plan – last time I got cleared was by an ortho in 2012). So my joints need you to be nice to me tomorrow, please :).
I decided not to tell Trainer D anything about my joints and planned to show up on Friday and see what would happen but I broke down and told him beforehand (email above) that my joints are complaining. Things escalated quickly since I felt that weird twinge on my ankle while I was “running” in the AlterG. After a few paces I was like, Meh, and forgot about it. But the following week it was harder to ignore even though, as I assured Coach R, “I tried to do nothing dumb over the weekend.” It is awfully convenient that Gen is an ortho, so she can check out all my joints and works on them weekly. But then I decided I should do my duty and tell my PCP. I was like, I’m not sure I really need to see anyone…I’m just asking for a referral just in case.
She, being way on top of this situation, emailed me immediately saying, We’re going to need x-rays of all that.
Today the man at the reception desk looked at the order and was like, Wow, so you’re getting a lot done, huh? Yeah. It turned out to be 6 – left ankle, knee, hip and shoulder, plus both elbows. I figured we might as well do everything at once.
The last time I did this was in 2012. I had just been discharged from The Place and the hemiparesis surfaced. I thought something was really wrong so I got the full work up. Sadly, A6 had just cut me loose so he wasn’t around to help me out. The really great thing now, I told him a couple weeks ago in the park, is that I have a bunch of people scheduled throughout the week to watch out for me and fix things as necessary.
I know that was my original premise – but I don’t always act like that was my intention since I kind of like to have my own way. A lot. Example: my goal this past Thursday was to keep my shoes on and my brace and sock intact even though Coach R had made cryptic references to ROM (Range of Motion) manipulation when I had emailed him about what was going on a couple days before. Everything stayed on my foot but that did not deter him from investigating.
By that evening, though, I knew for sure that things were malfunctioning in a way even I couldn’t ignore so I wrote Trainer D the email above. The good news is that I got to sit or lie down for the whole session today before I went for my x-rays. The bad news is that he did a lot of head shaking with knit brows when he examined the muscles near my ankle and lower leg. And then there was a lot of writhing, trying to wiggle away, verbal protests like, “Go away!” and other manifestations of momentary ingratitude on my part as he attended to the ankle, hip, and shoulder. My reaction was the unfiltered version of how I’ve been acting with Gen and CMD lately, who, BTW, have been in fine form.
My entire left side feels better, though, so I’m glad, even though it felt worse at the time. So now I just have to wait for my results. I told both Trainers, I already limp, walk with a cane, own a walker and a wheelchair….this really isn’t that bad. I meant that whatever happened to my ankle isn’t making my gait look a lot worse since it wasn’t that pretty to begin with. But it does affect my confidence. I miss my air cast – just like I miss Z, the one who used to carry me around Vibra :).
I’m also just uncomfortable all over. This is mostly likely a carry-over from being stressed out, but it’s been building for a while. For the first time I’ve noticed that Coach R has had to exert increasing amounts of leverage to stretch me. There was a time when I had seen assisted stretching being done, but it was wholly unnecessary for me– my own body weight was more than sufficient for me to roll into the splits in every direction.
Is that me shaking, or you? I asked on Thursday while my left leg was extended ceiling-ward. Both, I think, he said – it’s a good thing he has a strong grip otherwise I’m pretty sure my leg would’ve snapped back and hit him in the head.
Ah, well – even if it had, he’s the type that would recover quickly. I, on the other hand, lack that kind of elasticity. What are small potatoes for most people can turn out to be Big Potatoes for me. My old PCP put things in perspective for me: Your immune system is not compromised. But if you get a stuffy nose I want to hear about it.
So please pray I get a good report from all my x-rays and everything that needs healing gets healed up pronto! Thanks :)
Some of us like having our picture taken.
Some others…not so much.
Originally posted Nov ’12. This is my favorite Dr. Frankenstein story ever. I was finished with one exercise one day at The Place so PT6 cast his eyes around the room and said (kind of to himself), “Let’s try…”
“Uh oh,” I thought. “I know that tone of voice.” At that time I still looked down a lot but as I sat on the mat I saw a giant blue blob approach out of the right corner of my eye. It was PT6 – he was toting a large blue bolster down the aisle. He told me that I was supposed to sit on the bolster (a sausage-shaped padded form) with my legs extended and use my core muscles to stay on.
The first challenge was to somehow get myself on the bolster. I’m not as limber as I used to be and my injury has made even turning over in bed a challenge, so hoisting myself onto that blue cylinder while it was rolling around was hard, even though PT6 was trying to hold it still for me. Once I was on board with legs sticking out straight in front of me I tried with all my might to stay on the bolster. PT6 was right behind me, trying to calm the spastic rolling that was going on. Suddenly I heard him speak somewhere in the vicinity of my left ear: “Are you using your core?”
I was straining so hard I thought I had pulled a stomach muscle, but I mustered enough energy to breathe a meek, “Yes,” and refocused on staying on the bolster. On the inside I was thinking, “This was your idea in the first place!”
I’ve asked several of my PT’s and the consensus is that I need a strong core since lying in my hospital bed for a long time invited atrophy into my situation, and a strong core is also supposed to help compensate for my ataxia. More simply put, I think of it as helping me with my “wiggle – wobble” problem.
PT37 has come up with some core exercises I hadn’t encountered before, and a couple of weeks ago I finished up a set and she asked, “How do you feel?”
“I have abs of steel,” I told her, “Except they’re covered in some extra layers so you can’t tell.” We both laughed and then I think she confiscated my cane so we could do something else. At that point I was no longer laughing.
I am so used to being told to use my core that it is one of the mental refrains that form the soundtrack of my life now. The first time I stood up PT1 told me to be “Tall tall tall like a tree tree tree.” I was still in a mental fog, but I understood what she was saying and the sing-song repetition stuck with me. My core is like that figurative tree trunk and I have found that it really is helpful to engage those muscles when walking – it helps me walk faster and fall less.
The “solution” of using your core is so prevalent in my life I now look on it as the answer to almost anything. Are you wondering if you should go shopping on Black Friday? Use your core. Does your elbow hurt? Use your core. Do you want fries or apple slices with that? (cough *fries* cough) Use your core.
You get the idea. Seriously, though – the concept of core usage merits consideration by everyone, I think. Since when you come up against a crisis in your life, or find yourself between a rock and a hard place at work your actions will likely be informed by your core values. Even if you’re not in crisis mode now, you will be sooner or later…that’s just what life on Earth is like. So it’s a good idea to sort out those core beliefs before hand.
I celebrated 3 years of walking on Sunday, September 21. 3 Years! I know, I told an AT at the Running Gym as we chatted while I was on a recumbent bike, You’re like ‘3 years and it still looks like THAT?!’
Ok, maybe I’m the one who really thinks like that – but to people who saw me early on when I was a brand new walker, or still in a wheelchair, I’m vastly improved.
After going to Oregon I decided to mark this anniversary by going to see Dr. A6 Frankenstein (the one who taught me to walk). He is no longer working at The Place, but at a private practice and we eventually settled on meeting at a favorite park near our houses. He was on his way to go pick up the kids so we got to enjoy the weather for an hour. If he shows up too early the kids are not amused – it’s like, Dad – we’re not done playing.
He saw Mommy and me from a distance and when I tried to go give him a hug I realized I was going to have to do all the work since he was busy standing there, scrutinizing my gait. Guys – let me just state this up front: unless this kind of looking is part of your profession you cannot get away with it. It was hysterical – I wasn’t anxious about seeing him after all this time (since Dec ’11) since we’ve corresponded and he’s read some of my writing and my writing voice is very similar to my speaking voice, so I felt like it was quite natural.
He’s the same, but apparently I’m quite different. C’mon, let’s take a walk, I said after a while. By this point Mommy had gone home and J (Team Tanimal’s Recreational Director) had joined us. She now has the distinction of meeting A2 (my main PT in Oregon), A6 at the park, and this week she’s taking me to see Coach R (I’m thrilled bc this means we get to play after I work out).
We walked around a nearby play structure and I asked him, So what’s different?
His reply was immediate and absolute. Another difference was that I talked to him freely. When I was at The Place talking + walking was a multitasking scenario I wasn’t deemed ready for yet. So I told him how I used to take Hannah and Joshie to this park and made them wait, hoping the ice cream truck would be arriving soon. It would be so hot and they’d be hiding under a bridge or a slide for some shade and I’d be like, Don’t worry, kids, the truck is gonna come soon – I can feel it in my bones!
The best part, though, was when we were just sitting at a picnic table with J.
A6: You’re more verbal.
Me: I know, right?!?!
On the next episode of Hoarding: Buried Alive…
We were at GWH recently and P2 commandeered the donut holes Ruthie had gotten for the kids. He wasn’t eating them all – he just insisted on holding them.
The first time I walked on a treadmill without a harness was early on at The Place when I had just become an outpatient. My compassionate PT, P (this was before I had been paired with A6), stood next to me and said encouragingly, Look at all the calories you’re burning! The total was 14. PS. I thought I was gonna die. She then reconsidered upon studying my early post-inpatient frame and commented, We need to feed you a doughnut or something! Yeah, the time for doughnuts has passed.
About a month ago Coach R noticed my left hand jumping around wildly when I tried to give myself some flat-handed support with it. He does this thing where he drags two treatment tables together and pretends they’re parallel bars. This is so I feel “safe” so there’s no reason for me not to do what he says apart from sheer obstinacy. So when I tried to rest my left hand on the table it was hopping around which didn’t help my form. So Coach R resurrected the idea of Theraputty and cut me a nice new chunk to take home.
I haven’t played with Theraputty in eons but now I’m obsessed with it since I really want to work on my left hand – hence all the carrying books, coloring with my left hand, etc. I carry it in my purse and squeeze it whenever I’m in the car. One exercise is to make a small doughnut and then stretch it out like this:
I asked Coach R, When’s the last time you had a doughnut? Sadly, he had no recollection. I had a bagel yesterday, he offered hopefully.
A bagel, while similar in that it has a hole in the middle, is not a doughnut.
Coach R gets an A for effort.
Hello! I realized over the last couple weeks that my physical symptoms get really aggravated when I get stressed out. I know, you’re like, duh. So maybe I’m not the sharpest crayon in the box at times, but hey – I have other merits. :)
I got super stressed a couple of weekends ago and on that Monday I saw both Trainer D and Coach R. I see them more than I see anyone else right now, and there’s a lot of quiet time built in to our Training sessions. Plus I transitioned to operating on a full-disclosure model with them in July so it’s natural that I tell them things, especially since my concern was about my long-term Recovery prospects.
The response I got from both of them was immediate and staunch support. What a great way to start the week – thanks, guys! However, I’m glad to report that the issue is now resolved and I’m breathing easier. By the end of last week, though, before I had received word on anything, I had already decided that I oughtn’t to worry about this and was significantly more relaxed but the physical damage had already been done and I’m still on the mend from it.
The pain in my left shoulder was excruciating, and my legs and hips (esp. on the left) were uncooperative and (to quote M) “grumpy.” CMD alerted me to a lump on my left knee. It wasn’t painful or anything, and Trainer D and Coach R both examined it and said they weren’t concerned mechanically, but it was in a weird place. When I showed Gen (my unofficial Ortho) she said she wasn’t concerned, either, but we’ll watch it and if it changes we might brace it during certain activities. But since it doesn’t hurt I already stopped caring about it a while ago.
More currently, though, my (leg) muscles have been super tight lately. Coach R says I’m usually tighter on Mondays but yesterday (Thursday) my right side was tighter than it had been a few days before (!!). Trainer D recently asked me “When’s the last time Gen worked on your hip?” after he repeatedly queried, “Where do you feel this stretch?” And I kept on answering “the front of my left hip.” (That was the “wrong” answer.) Gen did indeed work on the hip this week and I’m better for it, although I protested loudly for a while. Yesterday, though, I said to Coach R, Do you see anything funny on my ankle? No, he didn’t see anything, but when I told him it hurt occasionally (started on Monday in the AlterG and then I forgot about it until Wednesday) he put a finger right on the spot. Does it hurt here? Me: Ummm, owwwww [you can stop touching it now.]
It was a CMD moment, except without the needles, fire, or electricity. He’s not concerned and neither am I – I mean, I totally forgot to tell him about it on Monday bc I can’t feel anything most of the time. He says it’s a very minor (Grade 1) sprain of something I can’t remember the name of. I told CMD today and she covered it with herbs and did some extra poking and stuff. I’m going to try not to aggravate it.
So that’s what last week was like. This is what RecoveryLand looks like. I had Tuesday “off” (no appointments) and I was so excited bc I haven’t had a free day in a long time and planned to go to Costco with Mommy. I know it sounds mundane, but it’s the routine stuff of life that makes me happy since so much of what was familiar to me will not be coming back. We made it to Costco and I put on my game face, intending to fly solo and collect the items on my list, but I jumped ship after 10 min, texted Mommy, and asked if we could go home since my eyes and dizziness were really bothering me. We came home and I slept for a long time.
But I ended the week strong with Coach R and Trainer D and treatment sessions with Gen and CMD. We went outside for the first time today at The Gym. Trainer D refused to let me wear my gait belt or hold his hand. He also indicated that holding on to the railing was off limits by asking, “When was the last time you had a tetanus shot?” Mmm hmm. Seriously, though, there were some exceptions and I was allowed some support at times, while he went through a PT-style training session.It was great in that it’s a hybrid of Personal Training and Physical Therapy he seems to know instinctively and from his own experience. I know he’s just making this stuff up, and he’s like, That’s part of the job. After we had that “spirited discussion” about his growing “concern” regarding the timing of my pain reporting relative to our workouts he chose to ignore my bluster and program some less strenuous time into Training since he thought I was showing signs of too much wear/fatigue. I’m glad he’s watching since I’m still having trouble mentally processing when he tells me to switch sides (right vs. left). Like I told Mommy once, I’m glad somebody’s watching, bc it sure ain’t me!
CMD asked me how JJ is doing today (I love that they know each other now!) so we spoke briefly about the work in Burundi. I reminded her how I had been there right before my bleed and how I had stayed home from work the day before. God was watching you, was her comment. I couldn’t agree more.
I love how Ed R. Blueberry has been welcomed into our family without question. To the kids, especially, he is simply part of the landscape of our lives. One day when Ezra was maybe a young 3 I went upstairs to nap at his house and he came running after me holding Ed. “Aunty Ning Ning – you forgot Ed!” He said it in his little Ezzie voice. Wasn’t that sweet?
The above pic is from Summer 2013, so it’s kind of old. This is what happened:
Josh: You wanna watch me play a game?
Boo Boo: Sorry, honey, I’ve got to wash the dishes.
Josh: I wasn’t talking to you, I was talking to Ed.
Even Tanpo has gotten used to Ed. I must admit, I have taken somewhat of a naughty delight in making Ed invade Daddy’s personal space, making Ed sit on Dad’s chair, books, desk, etc. – anywhere that requires Dad to take notice of Ed and move him. Daddy has referred to poor Eddie in the past as “Your animal” and simply, “this.”
Originally Posted Nov ’12. While I was at the 3rd Hospital I was awake enough to interact with visitors when they came to see me. I was still unsure if the situation was real or not – I just felt awful so let me just issue another blanket apology for any and all misbehavior that might have occurred on my part.
One day may Oregonian parents, DnA came to see me after Therapy. We sat down and I quizzed A with questions like, “What year were you married?” and “How many years were you in E?” (they lived overseas as missionaries). After she answered all my questions correctly I gave up and turned to D. “Well, it looks like A,” I told him.
We chatted for a while and D gestured over to my dinner tray. Dinner was early there. “Are you going to eat in front of us?” he asked me. “No,” I answered truthfully, “I don’t want anyone to see me like this.” I don’t think they heard that last part because they were already gathering their things and making motions to go since they wanted to make sure I got some sustenance down my throat while it was still warm. They needn’t have worried since the food cart the dinner trays sat in had amazing heat retention capabilities and it usually took my food a while to cool to the temperature at which I could ingest it safely.
Mom heard what I had said, though, and made a sort of “Oh, my poor baby” sound. I think she knew about my eating concerns since I had told her “I’m like an animal” the day before.
The shock of eating messily was pretty hard on me. Being able to swallow enough to get my PEG removed was a blessing, but relearning how to put food in my mouth etc. was not my favorite part of hospitalization. Not being able to get up and wash my hands as often as I wanted to also bothered me. I have long admired my cousin-in-law, CT for his skill at dissecting a crab with surgical precision using only a pair of chopsticks. He can thus eat crabs and lobsters very neatly without messing up his hands, which is not the norm at Chinese restaurants.
But eating hasn’t been the only “messy” part of recovery. PT37 “ran” me around Planet Rehab last Thursday and I couldn’t help laughing as we passed through the waiting room and I thought of what those people must have been thinking as we passed by – PT37 gripping my gait belt and me loping/galloping along. I heard the uneven rhythm of my limpy gait (even though I’m trying not to limp) and it made me laugh even more.
Mommy tells me I’m more “voluble” now that I’ve sustained a brain injury, but I actually try and control what I reveal emotionally, even though I’m in the Me: Unfiltered stage. I’m probably more “Me” than I was before this happened, FYI. But most of the time I’ve got my game face on since it’s been my experience that it’s sometimes “too much” for people to know 100% of what I’m really feeling. To clarify, I do not change the feeling itself, I just control the manifestation of it so that it’s a diluted, more palatable version of what I’m feeling that my friends/loved ones can grapple with more easily. This is not me trying to be brave – it’s a self-serving exercise in that toning the feeling down for public consumption allows me to participate more fully in life.
But even this “game face” version of my experience is a calculated exposure on my part. When I said, “I don’t want anyone to see me like this,” I didn’t realize it at the time but that ship had already sailed. All sorts of pictures and posts regarding my illness have been floating around in cyberspace since I got sick – and an army of people around the world have prayed for me as a result (thank you!). I was horrified at the hospital since I was just discovering my limitations but my parents knew it could have been so much worse and so wanted to document what they saw as achievements. The result is a bunch of pictures of me in a wheelchair looking unhappy. I have read old emails from Dad that literally celebrate the fact that I swallowed my own saliva. When I woke up I saw no reason to celebrate anything. But now I do. The fact that I did not fall off the Physio Ball at therapy last week is a reason to celebrate. So is the fact that I made it to Tuesday night meeting, although I had a little walking trouble on the way out.
I told my friends, (the Polish-Indian-“Russian”) S’s, that the “game face” exposures are intended to keep things real. Even though it might be “a lot” for people to digest when they’re busy trying to earn a living and raise a family I have embraced the idea that people are going to see me “like this” since A) it’s inevitable and B) I don’t want people to mistakenly think, “Oh, she’s handling this so well.” Because I’m not. I’m just good at faking things (like, I’m not dizzy. Nope!). So I hope that knowing I wanted to cry at therapy a few times this past week might help you do your duty at the office. Or the fact that I’m on my fourth neuro-psych might encourage you to seek professional help if you need it (if you’re a believer, though, make sure to run everything you hear through the filter of scripture). In any case, it’s a new day and I’ve got to go put my contacts and my game face on.
I originally posted this in October ’12. This week I got I special note in the mail from JEPK’s mom, and she enclosed the gift of some beautiful cherry blossom stamps – sorry I forgot to photograph them! I love cherry blossoms. There are trees that bloom nicely outside of the parking garage at work so when I got back from Africa in late March ’11 and was working from D.C. I asked my colleague C, “Did I miss the cherry blossoms?” as we IM’d one morning. She checked on her daily walk (I used to cross paths with her and J occasionally) during lunch and reported back to me that I had not missed them.
When I got home I slept downstairs in front of the T.V. and I was very confused about the things I saw on the news. I was conscious of the Royal Wedding (I think the nurses had been talking about it so I dreamed about it), but everything else that happened during the larger part of April-May 2011 I missed entirely since I was asleep. Even when I’m not asleep I live under a bit of a rock, but getting sick just exacerbated things. One day I couldn’t stand it anymore so I asked, “Mommy, they caught Osama?” She confirmed that yes, that had happened before I woke up.
A few days ago I heard about the car bombing even before it hit the airwaves. I didn’t miss anything since J told me about it. A couple of days later her sister RSKL talked to me about it, too. It had been particularly unsettling since there is a large K contingency in the Mother Country, and this act of violence had occurred on the street where a cousin who had recently visited us here was walking on a work break shortly before the explosion. Thank God she was spared.
A couple years ago another family at church lost a beautiful young niece/cousin in another car bombing. Our loved ones are often not spared and those who remain must mourn and keep on living life. For many people that life is lived within a conflict zone that doesn’t exactly invite peace of mind. But home is home, and peace of mind must often be Divinely superimposed on a situation.
A few years ago Mr. R (K&I’s dad) told me that nothing was going to happen to me that God didn’t know about. Mrs. R (their mom) also told me that no one was going to “tie my bow” (like when you put a ribbon on a present) better than the Lord would. I was really stressed out (to the point of psychosomatic symptoms) and was afraid of all the messy loose ends I was facing at the moment. In retrospect I’m amazed at how they told me these things with such conviction. “How did they know?” I asked myself. But the answer demystifies their adamancy: Experience. They spoke with certainty because of their own experience.
Several years ago when Dad had cancer I cried in the parking lot at church but tried really hard to hold back the tears because I told my friends, “I don’t want to indulge.” But when she saw I was really struggling, JEPK stepped forward to give me a hug that said I could cry all I wanted and it would be fine. It was the kind of comfort born out of experience – the kind of hug only someone who has known great familial sickness and sadness can give.
When I was in Burundi I met some people who had every reason to be angry and bitter, but had chosen not to let the violence that had robbed them as younger people poison their adulthood. They were now choosing to pour out their lives to serve “the least of these” of their country and I was amazed at how quietly and resolutely they worked after how much they had endured. The war years formed a generation’s collective experience and the people I’m thinking of chose to take their experience of God’s grace in the midst of tragedy and applied it to their lives as they looked to a brighter future.
So for all you folks in the Mother Country, thank you so much for praying for me over the past ~18 mo. Now it’s my turn to pray for you. And I’m not the only one over here who thinks of your anxiety and prays for your peace. There are so many of you over there that your collective experience of God’s grace must be astounding. If I could travel I’d go visit you and ask you to tell me about it over a very large meal :).