Tag Archive | hope

Reality is Sugar Free

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Some of my doctors are better than others at providing a clear view of reality, while others offer the sugar coated version. Some are extremely confident while others provide wiggle and waffle room. I would, sociologically speaking, find it fascinating if it wasn’t my future we were discussing.

I visited one of the top spine rehab neurologists in the country yesterday. I’m glad I didn’t get my hopes up before the visit, but I am also glad I went so this can be settled once and for all.

His phrasing refreshingly sugar free, so I am going to provide a  summary of our discussion here.

Dr: What is it that you think I can help you with today? What brings you here?
Me: Well, I haven’t seen a neurologist for my spine since I was a child, after the initial injury occurred, and based on a recommendation from my physical therapist I wanted an evaluation of current status and what I might expect for healing, and if you could do anything for the other bothersome symptoms I have like stomach issues, bowel/bladder, leg twitches while sleeping, balance trouble, leg weakness, things like that. And I wanted to see if you had any information on how this might effect vestibular function or migraines. (I think I rambled on a bit actually but that was basically what I tried to say)

He gave me a good long stare.

Dr: I have reviewed your charts. I see your xray here (points to screen) and this is not a healthy spine, I would be amazed if you didn’t have balance issues and leg twitches. I saw your vestibular testing, some of that was rediculous to give to you, you have impartial messages going through half your body, of course your brain is confused by that, that doesn’t indicate malfunction, that indicates adaptation to so many years of your central nervous system doing its best.

He then did a standard neuro exam – watched me walk up and down a very long hallway, hit reflex points in knees, feet, ankles, arms with his rubber hammer, had me try to push against his hands in various positions to check strength. He noted the weakness, abnormal reflexes, difference in size and temperature of my legs.

He made that face they always do when they confirm spinal nerve damage. Even when they know, they don’t like to see it. I don’t like it either.

He seems like he wants to dismiss me, and I almost panic, this can’t be it, I waited 4 months to see him, drove 2 hours, and walked 20 min, waited an hour past my time. I was getting my questions answered.

Me: Would it be worthwhile at this point to do any testing to evaluate the nerve health, like EMG or anything else to see how the nerves are functioning now? Either to help with physical therapy or provide information as to the extent of the damage? Give me realistic expectations?

Dr: No. It would not be useful. We use those tests as pass/fail, the numbers are irrelevant for treatment. You have already failed without further testing, you have signs of severe nerve damage. If we tested you, your numbers may come out high or low, but they will come out as abnormal, which we already know, so its a waste of time and money.

Me: Oh. I see. So I was once told that I might expect some healing every 10 years or so, the rate of nerve growth. Is that still true based on recent medicine?

Dr: Only the Good God knows if you may expect some healing, but some doctors do say some stupid things, don’t they? This type of damage is not known to be reversible and at some point it may be time to stop seeing doctors and get on and live your life as you can.

I had to blink that back, totally was not expecting that response.

Me: Okay… but what about some of the other secondary symptoms. I’d really like to sleep better. Anything to help my legs stop moving and twitching? Or to keep my stomach moving along to prevent the heartburn and constipation? Or to give me better sensation to know when it is time to use the bathroom instead of watching the clock?

Dr: We don’t have any magic pills for you. Again, with the damage and curve still left in in your spine I would expect some considerable irritation and twitching. You should ask a GI about those other issues. What I will do for you is contact your vestibular therapist and add some exercises to your plan that will help with balance, make you more confident, and reduce falls. I’m also referring you to a vestibular neurologist. There’s nothing more we can do for your spine. You should know it is very strong now, between the fusion and the hardware, your spine itself is quite safe and protected within its armor. You could still pull a muscle, but there is nothing you could do to hurt your spine, even drive a truck over it. hehehe

He recommended Otago and Tinetti exercises. I looked them up and found that they are mostly for older adults fall prevention. Hmm. Seems like my CNS has aged prematurely. Here is info on Otago and here is some on Tinetti exercises, each has a pdf to download and youtube of course has many videos too.

So I guess I appreciated his attempt to give me confidence and lighten the mood. I believed him, every word. My spine is solid. The damage has not changed much since I was 12, I don’t really expect it to change much, better or worse, so I guess I can accept that. It isn’t something that needs monitored. OK. I am fine with one less doctor, really I am.

And I agree that I don’t need any more painful, expensive tests to prove what we already know. Fine. Move on.

Somewhere I was maybe hoping for some radical new treatment, something cool with stem cells, or a brand new medicine that speeds up nerve transmission, or something that filters out these random twitches, an implant, an electrode…but no such luck. Its ok. I’m ok. I’m glad I asked.

 

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Need a Lift?

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Ever had your car broken down on the highway, had to pull over, watch all the other cars zoom past you, life goes on full speed while you wait for help?

That’s how I’ve been feeling every day. Watching healthy people pass me by.  Live their lives without me, at a pace I cannot keep up with. It’s not anyone’s fault now. I can’t expect them to wait for me. They can’t expect me to keep up. And so I’m on a different track, like an alternate reality, life in the slow lane.

I suppose I’ve always had a taste of this, a bit of exclusion for this reason or that. But now the reasons have multiplied, yes like rabbits, why did my mind go there, and I’m finding that I’m not really included anywhere now. Exclusion has become the rule. I am a ghost in my own life.

And just like when stranded on the side of the road, I have no escape route. My body seems to have more than a simple flat tire, not that I would know how to change that myself anyway, but someone would, eventually. Nope. I have one of those issues, that when you lift the hood, multiple people stare and scratch their heads, going “hmm, not even sure how she made it this far, what a mess in here”.

And then I think, ok, what if I do find someone that figures it all out and can actually fix me? How am I supposed to get back into traffic? After all this time just drive back in without getting run over? I think not. but that seems lightyears away if not impossible, so whatever…

OK, enough with this bad highway metaphor. you get it. Just a thought I had.

What I’m trying to say is that I’m completely worn out by all the medical tests these doctors are ordering, and all of the abnormal results that prompt more tests and referrals to more doctors. At first, doctors were saying, I need to accept my new reality, lower my expectations, this is as good as it gets. They were not listening to my symptoms but painting their own conclusions about me. I kept complaining and using different words until I got sent for some tests. I think they were thinking nothing would come of it, but let’s satisfy the crazy lady.

But then wait. She actually has abnormal reflexes in her visual and auditory system? Could this explain the sensory overwhelm she has been describing for years now that has been dismissed as anxiety? YES

Do I have anxiety? yes, not denying that, but this is different, and please give me credit to know if I am anxious or if my nervous system is giving me a similar feeling due to an autonomic response. Well they do now.

Turns out I have ocularmotor issues, visual processing delays, saccadic dysmetria, hyperreactive auditory and visual stimuli with little suppression. I have loads of other cool words I could insert from my test results that I don’t feel like looking up right now. My world is literally overwhelming my nerves. So all of the wacko, wonky CNS stuff, like feeling lightheaded, sweaty, tightness in chest, nauseous – all very similar to anxiety – can be brought on by ordinary sounds, smells and sights. More intensity means I have more intense reactions, similar to motion sickness. Its like I have sensory input sickness. My vestibular system is overloaded and confused.

Okay. So I’ve had balance issues for nearly 30 years, maybe all of it wasn’t from the spinal cord injury, but made worse from it? And the migraines are a product of a worn out nervous system trying to make sense of the world. See isn’t this fun? I don’t blame those doctors for pushing me aside, what a freaking mess.

And I know this is not written clearly. Apparently thats something I have also lost, the ability to think, recall, and use thoughts in a proper sequence. I’ve been avoiding writing much due to all my issues and frustrations and irritating red underlines on the page to correct. But maybe I shouldn’t. Maybe I should trust that whoever reads this can put it back in the proper order and you all just may enjoy a daily puzzle, who knows. See I’m still snarky so I know I’m still here hidden in this mess of confused neurons.

Anyhow I met a new vestibular rehab therapist today that has dared to give me some hope. You all know how dangerous that can be, to be given hope once you have gotten to a stage of acceptance, only to have it yanked away again. I’m so afraid to walk that line, and yet I must if I am going to keep trying to battle this and get well, or as well as possible. I could really use some support so I’m not sitting on the side of the highway all alone.

What do you want to do today?

What if there was no tomorrow? What if you couldn’t rely on tomorrow and another tomorrow and another to delay your dreams, goals and desires? What do you want to do today?

This video is from one of our favorite shows, Phineas and Ferb. Everyday these boys fight summer boredom by coming up with something outrageous to do. So many catch phrases and twisted plots, nerdy humor, and awesome musical numbers. Everyday they say I know what I want to do today. And then they do it. Whether it is building a roller coaster, a time machine, a winter wonderland, robot clones…And of course their pet platypus is actually a secret agent fighting against an evil scientist and no one knows… We just love this show.

I’m guessing most of you spend most of your time doing things you don’t want to do. You trudge through life, running endless errands, doing tedious chores. Maybe you don’t hate your job, but most people seem awful happy to get a day off. But then how do you spend your day off? Escaping life in front of the TV? Are you bored? Tired? Do you even know it?

When is the last time you truly felt alive?

Hmmm.

I’m not sure most of us are actually living. If you are, please ignore this. I do know some people that skydive and run with the bulls or climb Mt Everest or whatever. Or I know some people that are going back to school to pursue the career they actually wanted. Living can take very different forms but I do think some key ideas are central.

How to feel alive:

  1. Do something you want to do everyday, not only out of obligation
  2. Tackle your fears – you decide which ones need tackling
  3. Have multiple goals, little ones and big ones, and not all of them related to self-improvement, some are just for fun because you want to do them
  4. Practice mindfulness, live in the moment, experience everything NOW

I think that’s how to get started. I say I think, because I am not truly living. I can’t tell you the last time I felt alive. It has been years, many years. I am idling through life right now, going through the motions of what needs to get done. I enjoy moments, not saying that I don’t. This is different. I might enjoy leveling up in my video game, or that snuggly feeling watching a movie with my kids on my lap. Those are nice. But they don’t fuel me, keep me going, or make me feel alive, move me towards a greater goal, define me, fill me with awe or rock my world if you will.

I want to be amazed. I want to be overjoyed. I want to be excited. I want to feel.

I want to learn. I want to create. I want to grow. I want to experience. I want to share.

I want to feel alive.

So I’m going to start a list full of things I want to do, fears I want to tackle, and goals I want to accomplish. I would list it now for you, but I can’t. My list is sadly empty. White space and crickets. I don’t know what I want. Hmm. So I guess then

Goal #1 – figure out what I want and make a list

There I started it!!

Running, running

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Running, running to catch a star
She needs to go, go so far
away
from there and here
she is
Blindly leaping, crazed, and dazed
Idiots they are amazed
by her
They are running, running to catch a lie
stick a needle in your eye
promises broken, again she cries
screaming silently, can’t you hear
from there and here
she is
Running, running to catch a thief
A stolen life, eternal grief
lost
before being found
Her shooting star, was shot down
nearly lifeless to the ground
Running, running, to catch release
She needs to find that life can cease
to chase her
from there and here
She is
Blindly leaping, abused and bruised
lost and confused
seeking
only
peace

Learning to Trust…Myself

Trust is Hard. But that’s okay because hard is a marvelous improvement on impossible.

At some point I stopped listening to myself and what I need or want. Did I ever listen? Actually maybe not. I was never permitted to create my own identity as a child. I never went through the finding myself stage as an adolescent. I believe I am doing that now. Teenage angst at age 40, yeah, that’s exactly what I need. Yay.

I am noticing that in the midst of this angst, once in a while I notice little sparks of wonderfulness. These sparks are so startling and so powerful they stop me in my tracks and fuel me for days. What was that? Why did it happen? How can I make it happen again? Is it possible I can feel good one day? Is it okay to hope? Is it safe to dream yet?

After some of these sparks, I noticed a difference in myself. It’s tough to put this in words because it is only a hazy sort of feeling. But I noticed something more solid inside of me. Less dead? Less empty? Something instead of nothing. When you have perpetual nothing, believe me a spark of something almost knocks you over.

I recall caring about stuff, having dreams and motivation, being driven towards goals and achieving, hell overachieving – but I don’t think those were my goals or dreams. Not entirely anyway. I’m still unraveling. It’s not such a painful process at the moment, only a slow one. Like walking through deep water with my eyes closed. Slow going and once in a while I feel something new. Mostly I just keep trudging along because I don’t know what else to do.

But when I feel this new something, I have less doubts in myself. I used to feel confident in my choices and decisions. I used to walk around with a fierce internal driving force, yes a quietly burning one, but still there it was driving me towards my future that I planned. This new confidence, although fleeting, is making small ripples of change. I’ve been stuck for years now, without a plan, unemployed, waiting, healing, recovering. I’m hopeful these glimpses, these sparks of strength and confidence will keep coming, and will help me to learn to trust myself, my judgment and my decisions. Feeling like every decision you ever made has been wrong tends to undermine your own trust, a major component in PTSD. So I’ve been working quite hard to go back and look at those decisions with compassion, understand I did the best I could with the tools I had available at the time, and that truthfully, there is no way of knowing if past decisions were bad, maybe they would have had different outcomes but not necessarily better outcomes.

 

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I was fortunate enough to catch a glimpse of one of these handsome fellows perched in a tree the other morning after I dropped the kids off at school. I was unable to capture my own photo sadly, so I’ve borrowed one here to show you. We have a decent population of peregrine falcons and their bright white chests always catch my attention if their size didn’t. These birds are huge, majestic, strong, fast, and beautiful. They tend to sit just like this with their wings out a bit, I imagine ready for flight in an instant.

Why am I telling about this bird? Because of how I feel when I see one. I feel alive. Instant tingles of joy spread through my body. I feel lucky. I feel stronger, like his strength is on loan to me. I feel like we did something right, well, after we screwed up and nearly killed them all unintentionally with that whole DDT nightmare. These birds almost disappeared, due to humans, but humans saved them and now they choose to live in my trees and grace me with their presence.

I guess these birds remind me that we can change the world, or at least make an impact. Our actions do matter. We can wipe out species or bring them back. We can lift up and support people or cut them down and trample them. We can choose to ignore our problems or we can work on improving the situation. Change takes time, but when it works, it works beautifully.

I’m applying this to my own recovery and trying to be more patient with myself, and to celebrate improvements no matter how small. This helps to build trust in myself that I can care for me, and that I’ll stop hurting me. When you self-harm, self-sabotage, and self-punish you see yourself as an enemy too. I hope this makes sense because I rewrote three times and I still think it may be out of sequence somewhat, but its the best I can do with it. I’m trying to show how my thinking is changing, that I’m starting feel alive in fleeting moments, which leads to new self care behaviors (like establishing and protecting my boundaries, eating healthier, getting social support, making friends, better hygiene, etc), which builds trust in myself and stops the self loathing cycle.

 

 

 

 

 

 

 

 

emotional overload, again

I started outpatient physical therapy to help strengthen and balance my back and legs after my surgery. I knew this was likely to trigger flashbacks from teenage PT, me learning to walk again after my first surgery. And it did. It was hard, but I think I managed well. I made sure I had a female therapist when I made the appointment to decrease my anxiety about someone touching me. I kept myself grounded by telling myself the year, that I am a mom, listing things I could make for lunch.
Session went well, whenever I was triggered, I just brought myself back and instead of telling myself I am a stupid freak, I told myself it was understandable this situation was triggering.

Big trigger when she videotaped me walking. Teen PT did that with me in a swimsuit. Teen lawyers did that to prove my freakyness for AF’s malpractice suit against my surgeon. Both were horrible, humiliating times I was not in control and no one could help me. But some breathing and grounding got me through it. I know she noticed something wrong, but I think she thought I was embarrassed, tired from our workout, but not triggered. She assured me my face would not be in the video, only legs for gait analysis, and that it will help her design my care plan.

She was completely awesome. This PT lady was smart, had empathy, had no trouble with my questions or my special requests.

Near the end of the hour, we started discussing how my leg previously never had any muscle retention. That I worked furiously each day to keep it from sliding backwards, yet I woke up each morning weaker again, no growth, no tone, because of improper nerve signals.

She tested my spatial recognition, my proprioreceptors by forcing me to look away and keep my hands off my leg during the motions. It feels wrong, and a bit dizzying, but if I concentrate, I can do this. This is new from the recent surgery decompressing the spinal nerves. 

PT lady said with this, it is possible that new muscle can now be rebuilt, actual progress and forward potential after being stuck for 27 years. I am still too afraid to hope for this, even though I am already seeing small gains since the surgery. Seeing should be believing, but I know too much that seeing can be deceptive also.

Hope for someone like me, does not come easily, and has a huge cost when things don’t work out. So I remain safely curious. Curiosity keeps me moving and trying – without fear of devastation.

Except I felt a little hope with her words. No matter how much I tried not to.

Then I felt foolish and afraid for feeling hope.

Then I wanted to share my hope with my mom.

That’s when I brokedown. Too much. I made it to my car and cried. Oh mom, how much I wanted to share GOOD news with you….no matter how troubled our past, I do know the pain you felt when I was paralyzed. I somehow thought this news might heal some of that pain, bring us closer. Perhaps not, but I will never know. Just know I forgive your mistreatment of me when I could not walk, I think you did your best to cope and only had denial. 

So I started PT, had several flashbacks, remained grounded while being touched, let myself feel some hope by accident, and I missed my mom.

A full day…all in an hour.

Surgery success

I’m home from the hospital and mending nicely already from back surgery. I’m in less pain than I was pre-surgery, generally, unless I’m walking up stairs or doing extensive physical therapy.

Here’s the news, something I’m afraid to type, for fear of believing in it or making it not true. But this surgeon was able to correct the problems caused during my childhood surgery. He says to me, “I decompressed the nerve completely. You now have fully restored communication.”

And then he left and I was so groggy, but as the next few days I started waking up from anesthesia and getting stronger, and the neural assessments on my legs were equal. I could lift my right toes and hold them there. I could lift my right knee off the bed. I could stand and walk and feel my legs beneath me.

I still think I’m dreaming.

27 years I’ve had a weak leg. And he fixed it? I went in for a fusion at L4 to Ilium. But I gave him permission to inspect and revise original fusion as needed. He found the compressed area up around T12. And he fixed it. He FIXED it!!!!! I’ll detail the surgery itself in another post.

I have sensations in my belly, bladder, and my legs that are foreign to me but I think are supposed to be there, things I haven’t been able to feel all these years. And even better, the horrible blinding, crushing pain I’ve had in my legs..is gone. Just like that. The pain that no meds, no position, no exercise, nothing helped. It was a constant. No more twitches and electrical zaps making me yelp.

So I can’t let myself believe this is true, because good things don’t happen to me. I don’t get fixed. Something is going to happen, like the swelling will go down and something will shift and it will all return. I’m so afraid to be happy. I keep almost crying with joy, but then hold it back when I fill my head with fears and doubts.

But the truth is…I’m better. I’ve still got a weaker leg, but it responds to me now and is already stronger than last week. Like it’s been sleeping and it’s ready to work now. I have a long road ahead, but physical therapists said I might walk without a limp one day. She said I might even run. OK typing that started the tears. I want it so badly, to run free. To feel strong. To look ahead and not at the ground. Can it be true? Please?