Resigned

What is this new feeling I have lately? It seems to be a new flavor, a mixture of several. I’m feeling calmer, not exactly at peace, but not so turbulent either. The sadness is still there, a deep underlying sadness that I’m sure will always be there. I have less anger.  I have less ambition and determination, less fight in me. I think this is a good transformation, or if not good as I don’t like weighing in with good and bad, lets say a necessary transformation, though it feels odd.

I think perhaps my spirit is finally broken, tamed, like a wild horse, I have been broken. Even more, I’m the wild horse forced to live out its days on a carousel. carousel-1703273_1920.jpgI am resigned to live my new life, accepting the constraints of the saddle and bridle and staying within the limits set upon me. I’ve been trying to be free for far too long. I don’t need freedom to do good. There is much I can do from here and it will have to be enough. I can be grateful to keep moving, if only in circles.

I searched for words for this feeling and I read the synonyms for resigned, I feel this is exactly where I am right now. Look at this list…tame, agreeable, long-suffering, stoical, patient, tolerant, gentle, quiet, ready…I could describe how each of these words fits me.

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A few days ago this feeling settled in and said hello. I’ll describe that day here, because it has taken me several days to say hello back.

I can’t rely on my memory any more. When smartphones first came out I ridiculed people for spending so much money on a device. Now I can’t live without mine, as it truly thinks for me, reminding me all day long about what I’m supposed to be doing. So I check it as usual and see kiddo has a baseball game. No problem. No other conflicts. I know I may have to drive him, so I plan my time so that I am rested.

When he gets home from school I look again and see it is an away game at a ballpark I am unfamiliar with..and I map it and see it will take nearly an hour to get there. I remain calm as I tell kiddo we have to leave very soon. He asks for his uniform. Crap. I forgot to wash it. All my checking on the game and calendar nothing jogged my memory for this detail. So I add “wash baseball uniform” to my calendar so I don’t forget again and he has to wear it dirty for this game, luckily he didn’t do much sliding it didn’t look terrible.

I throw away my feeling of failure, no time for that. I feel calm again. Kiddo needs a snack. Make him a sandwich to eat in the car, except I forgot to go shopping, used up the bread this morning. Crap. quickly slice some cheese and grab pretzels. That feeling in my stomach again, like I should be doing better, but I have to ignore that. I make coffee while he gets dressed.

Out in the car my phone wont let me get the address for the gps. We are already late. I can’t think clearly. I call hubby from the driveway for the address. I enter it the address and pull out while it it loading. But then I can’t see the screen on my phone. I hand the phone to kiddo and ask him to adjust the brightness, I had it turned way down and couldn’t see it in the sun. He didn’t know how. What? How does he not know this, its just just his kindle, but I have no time to feel irritated. At the next red light I adjust the phone myself and see the gps is still not loaded. I know I have to get on the highway but I have no idea where to go after that. Anxiety is rising. Breathe. Its okay. I pull over and really look at my phone. I notice the cellular data is turned off…oh yeah, I did that at his last game when I was playing a game on my phone and didn’t want to use data. Crap. That has been off for 3 days.

I turn data back on and my phone blows up with all the queued MMS texts that could not come through. Crap. All that missed info – yup, thats why I didn’t know his last practice was a different time, and so much from school, but no time now to feel stupid. GPS is loading finally so I get back on the road. I don’t look at the clock. We are late, I already know we are late, and the clock won’t change that and I don’t want to feel nervous while driving. Kiddo is chatting about his school day. I can barely understand him, my head is racing and I have to focus on driving, but I say “uh-huh” a few times.

We make it off the highway, and into these terrible, but beautiful, twisty turny hilly roads. I’m getting motion sick and driving slower than the speed limit. Crap. We are so late and I can’t even drive full speed. We go through forest lined roads, past green mucky ponds, further into the valley. We make it to the ballpark, and can’t find his team, there are several fields and games. We spot his uniform color and I see the closest parking lot is full, so I continue on. We got there. Sigh of relief. He grabs his gear and heads to the field. I stay in the car.

Why do I stay in the car? So many reasons, where to start.

  1. my limp. Okay so this place is full of steep hills and slippery gravel. I did not want to attempt that steep hill and the only other way that was not so steep was about a quarter mile away and through the grass fields, still difficult. Even with my walking stick and new knee brace, these distances look like miles and miles to me, it is just so difficult to walk across. And I feel stupid, like everyone must see me coming.
  2. neuro issues. It was hot out and no shady places to sit even if I did manage to get myself down there, so I stay in car with AC running, my meds make me dangerously heat intolerant on top of the struggles I have to self regulate due to nerve damage. Sitting in full sun also triggers migraines
  3. my limp and social issues. no places to sit at all, I would have to carry my own chair which would be very difficult on the already difficult terrain. If I had ever spoken to the other parents, yes I’m sure one of them would carry a chair for me, but then I feel like I would be stuck sitting with that person and forced to be social. I can barely manage my own life I don’t want to hear about theirs, it is too much, never knowing what people might share or ask me.
  4. anxiety. If I managed to get myself down there and find a place to sit, I didn’t see any place to be quiet. Some of his games I can put a chair at the end of the line of parents off by myself enough that I feel I have my own space. But here with so many games going on at once, cars and people constantly coming and going, There was no way to position myself safely, I’d be jumpy and startled the entire time, and I can’t do that – I have to drive back home
  5. mental fatigue. I can’t pay attention to the game. Sorry kiddo, I’m proud of you for working hard, but baseball is dreadfully boring and I have no clue what is happening even when I do try to focus it makes no sense and my mind wanders. I usually bring my camera when I sit near the game but in my car I can close my eyes, read a little, play a game on my phone. And they last for hours, too exhausting to pay attention that long to anything. So I try to watch for when its his turn at bat and a few key plays when I hear the crowd get excited, otherwise I reserve my energy for the return drive

Thats about it I think, though I think I jumbled them up a bit even though I tried to organize it in a nice numbered list, hope it makes sense.

I’m just trying to illustrate how this simple task of getting my kid to his game is not simple for me. I can barely do it. I try to be grateful that I can still do it, at least be useful and get him where he needs to be. But it is difficult to watch the other healthy parents, hooting and hollering, running down that gravel covered hill like its nothing, carrying chairs and coolers, sitting and chatting with their friends, they seem to really enjoy the experience. I don’t know this, of course. I’m only giving my observations and they seem to enjoy the game and the social time with the other parents. I’m not a part of that world. I live in a different one. Am I jealous of the other parents? In some ways, yes that is likely what I am feeling. Anger that my life is so difficult. But I can’t stay there long or it festers. Acknowledge and keep moving because life does not slow down for me.

My life is often surreal. Like I’m in slow motion or everyone else is on fast forward. They walk and talk and think faster than I can. I am no longer trying to keep up.

I am resigned.

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I rolled in it. So what

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I wrote about my bad mood and bad attitude yesterday. It felt a little like I was rolling around in the mud, getting good and covered, feeling it ooze out between my toes, clump up in my hair, even crunch down on some grit in my molars once in a while.

I think that bad mood needed validation because I feel so much better today even though absolutely nothing else has changed.

But I’m generally not allowed to gripe, moan, complain, vent, or bitch. I’m supposed to roll with the punches and keep on smiling. Usually I can. But lately it has been getting harder to smile and I wasn’t sure why. The thing is, these punches, they actually knock me out, flat into the mud. Each time I drag myself back up and keep limping along. But for a little while, I’m going to stay down here and roll around in this mud. Stop hiding.

I can’t exactly go on strike, but I can lighten my load a little while I stay here and make mudpies. I’m supposed to go to an awards banquet tonight. I’ve been so worried how to handle it, how to smile for that long, how to pay attention and get out of conversation I don’t want to be in…screw it. No one needs me to eat chicken tonight. My husband can go without me while I make mud angels.

I think if I embrace this dank muddy place I’m in, instead of trying to hide from it, I’ll be much better off. Besides. Mud can be really great. Think hot springs and mud masks. Mud wrestling? Well…not my thing but hey some people like it. Adobe houses. Clay pottery. Yeah. I’m just going to stay here in my deep dark pit and see what happens if I stare at it directly.

Behind Sad Eyes, Green Eyes, Blue Eyes

I’ve had the echo of a song in my head for days and was struggling to place it. My memory gaps have hit especially hard in the musical and lyrics area. I can no longer sing along to songs I’ve known my entire life. I kept getting the phrase about sad eyes and this haunting melody, and thanks to the miracle of google I figured out it was The Who “Behind Blue Eyes”. Makes sense I made it sad in my memory since this song expresses such pain. My eyes are not blue, they are green, but they are sad, always sad, even when I smile and laugh, the sadness never disappears. I see it in the mirror, I see it in every picture, others see it too – if they actually look.

I wanted to share the song here, and I found a lovely cover instead, by Janet Devlin, who may be a magical Irish elf, her voice gives me chills. Be sure to check out her other songs when you get a chance. Her singing this song gave more meaning to me. I look a bit like her. Or I used to, a few years ago. When I visited Ireland everyone thought I belonged there, finally no one thought I was too pale. My hair was redder before the whites took over and I had to color it browner than my natural shade, because I’m allergic to red dye, of course.

Anyways, here’s the song, have a listen, then I’ll talk about why its on my mind.

I am not well. I am not doing well. I am not feeling well.

I need to find a way out of this hole. I’m not sure that this is depression exactly, as I’m eating well, exercising, have good hygiene, going through all the motions that usually stop when depression hits. Some of the grief has lifted for losing my parents so that has actually improved.

But my attitude is terrible. I’m angry, irritable, annoyed at the world. I really don’t want bothered. I’m finding every human to be a huge nuisance and I keep them as far from me as possible.

My life is difficult. I spend my days doing physical therapy, brain rehab, and vestibular balance exercises – all to keep from getting worse – nothing seems to be improving. I’m tired from this constant effort and getting nowhere. But if I stop I do decline rapidly, so I know its important. My knee complaining in its brace and my new sciatic pain is proof of that. I have to keep up my strength and flexibility or I hurt myself when I try to do something so outrageous, ya know, like walk on a slightly uneven path to take a photo of a wildflower. That was over a week ago and I’m still in so much pain I can barely walk across a room. I am waiting to see an ortho for the nice popping sound my knee is making.

Yes I’m complaining. I’m in a sorry state of mind, a dark, foul pit. I don’t like it here. But I can’t pretend I’m not here and conjure up some rainbows.

I stopped at the liquor store the other day, held the bottle in my hand, put it back on the shelf, and went back out to my car to cry. I have not used alcohol to escape or hurt myself in years. I was very close to it. I wanted some freedom to not feel like this. But I know it will hurt me, cost me loads in recovery, and cost my family too. So I put it back.

It seems my only tool is distraction in the form of video games, netflix, and sleep. I can’t keep up on the video games any more, so I play them and try not to care that I don’t do well, my reactions are so slow now, my visual processing delayed. I exist in this zombie state of tv and light sleep mainly that passes the time when I can’t do anything else.

I actually hate my life. I do not look forward to anything. I hate that I wake up each day. I try to be grateful and feel horrible that I genuinely am not. I don’t want this. Yes I know it could be worse. I could be blind or deaf or in a wheel chair. I don’t feel grateful to sort of be able to kind of walk a little.

My daughter was being silly this morning, and for a normal human this would have been silly. They were ringing a bell and placing it on each other. She got it ringing and came up behind me and touched it to my ear. I screamed in pain and lost my balance, barely catching myself on the counter. It is hours later and I can still feel the fullness in my ear, the tingling in my face, the pain in my head, and the after effects of that much adrenaline. I nearly blacked out. From a random sound near my ear. Yes the doctors have documented all sorts of abnormal acoustic reflexes for me that activate my central nervous system. No the doctors can’t do a damn thing about it. My daughter was scared to death by my reaction and I had to minimize the pain I actually felt, try to gather myself together, recover, and get them off to school with partial tunnel/slanted vision. Sometimes I’m not sure I should be driving like this, but I seem to be able to see through it as long as I’m careful. I never take chances, I wait until no cars are there before I pull out. Sometimes I can’t see well enough, and then I don’t drive. My ears are still ringing, screaming from this morning. My nerves have otherwise mostly calmed back down.

I hate living like this. How am I suppose to heal from PTSD when my world is actually hazardous to me, when ordinary objects: sights, smells, sounds – can overload my brain and ruin my day in a second? So yeah. I am paranoid. Looking for things that will hurt me, make it so I might not be able to walk or drive home. I have gotten stranded too many times. I have people relying on me, with schedules, or it might not be so bad to be patient and wait it out.

New doc adds chronic pain syndrome. Basically means I’m a nervous wreck. Yeah seems to fit.

I’ve just been stuck here too long. 3 years now since I stopped working. I’m in the middle of applying for disability which is not a fun process listing everything wrong with you. I know that’s part of this dark mood, that horrible paperwork.

Another part I still the constant stress from Hubby and this broken relationship. Most days right now my dislike and resentment for him border on hate. I have repeatedly told him I have no feelings for him and he continues to try to get affection from me. I have no where to go, no money, no family. I can’t leave him and he won’t go, so I am stuck in this house with him. We try to be good to each other, make a pleasant home for the kids while giving each other space. But then he gets lonely and “forgets” some of my biggest triggers, like touching me while I’m sleeping. He did it again this morning. Maybe another wife would like to be woken up with a foot rub, but for me it is terrifying, and I hate having to tell him to stop, and I hate the mental workout it takes me to be able to say stop, and I hate the anger I feel, and I hate the fear, and I hate the fatigue that comes afterward. Just leave me alone.

I feel like other people get a break from stupid life, get to enjoy things like games, concerts, movies, festivals, amusement parks, sports, camping, boating, painting, writing, reading.

I have nothing. I can’t tolerate anything for long. I lost my ability to create, and I can barely experience what others have created without causing myself pain. I’m trying to find balance….trying….but these scales seem tipped, not in my favor at the moment and I don’t know if my rotten attitude is blocking the solution or this is how it has to be.

Opposite of Lonely

I don’t often feel lonely, not the way I hear others describe it. I looked it up in a dictionary and thesaurus, and curiously, could not find an opposite for lonely that makes sense to me.

Lonely is defined as the one of the most terrible things in the world: Sad because one has no friends or company, isolated, alone, lonesome, friendless, with no one to turn to, forsaken, abandoned, rejected, unloved, unwanted, outcast, deserted, uninhabited, unfrequented, unpopulated, desolate, isolated, remote, out of the way, secluded, off the beaten track/path, in the back of beyond, godforsaken; in

the middle of nowhere.

Opposite? Populous. Crowded.

I do have a longing for meaningful connections in my life. Love and acceptance from people you can trust. I have a deep, dark, pain, an emptiness much greater than loneliness, because I know it will never be filled. I’ve looked into the depths of this chasm, and it is seemingly bottomless. It seems I’m safe as long as I only glance at it, no jumping in.

For me, acquaintance people are nearly always a nuisance, a stressor. Hell even the current people in my life that are supposed to be loving, supportive, combat loneliness, like my husband and in-laws cause stress and conflict. My kids are the only people I enjoy time with, and even then after a bit , I still feel crowded, smothered, like I can’t think or breathe. When I am alone, I feel peaceful. When I am with others, the tolerance clock starts clicking and I have limited time before I bolt, hide, isolate myself and recover from the constant scrutiny, questions, confusion, misunderstandings, obligations, words…so many endless words attacking my system.

It wears me out to nod, smile, be polite, figure out how to respond, sense danger, protect myself. Talking is my least favorite activity. I’d rather go to the dentist than have to chitchat with some random person. Is it my turn to talk? What did they just say? Are they lying right now? What time is it? Is that a TV show they’re talking about? Is this something I’m supposed to know snd recall or are they telling me something new? Ugh. Too stressful

Add multiple people and this feeling is exponentially heightened, to being the opposite of lonely, I get a strong need to be alone, to escape.

I’m not heartless. I do wish all these people well. I just don’t want to hear about it, sorry. Most things people tell me I can’t do anything about and I feel uncomfortable having to express sympathy or advice. Most people I start diagnosing their personality disorders, recognize cognitive distortions popping up, and of course I must remain silent. People don’t want to know this. They don’t actually want to change their own behavior or think about their thoughts. And they would be insulted or embarrassed, even though they are the one oversharing to me. It is only socially acceptable to offer support like, oh you poor thing that sounds difficult for you. They just want to hear it sucks, for validation.

I’ve found when I interact online, I can control the pace and intensity and don’t get overwhelmed. Each time I venture out to a real life Meetup, it is not a positive experience.

I’m not sure that’s bad or unhealthy. At this point in my life, if I feel satisfied by this level of connection, than maybe I need to stop trying to force myself into a more social, extroverted role just because I’m supposed to be lonely this way.

I’ve been reading “Quiet” by Susan Cain and embracing my introverted self. I don’t think I need fixed. When I socialize it is to complete a task, or because others want me there. I get nothing but stress from most gatherings otherwise.

I watched the Netflix series “Atypical” which was fantastic. I’m not an expert on autism to know if they portrayed this accurately at all. It was entertaining, but also I indentified strongly with his social struggles. I don’t think I’m autistic. But I do think I’m atypical and that my brain can’t be changed much at this point. I don’t connect and form bonds or relationships like most others do. I’m highly sensitive, tuned into emotions, which is the autistic difference. My hyperactive neurons though gives me high scores on tests for autism, overwhelmed by sensory input, can’t look people in the eye, don’t make friends, can’t work in groups, hate loud noises and bright lights, take things too literally at times, repetitive soothing behaviors, trouble following conversation, it goes on and on. Fascinating really. So it seems that autism may be caused by too many neural connections, a lack of pruning, is one theory. I’ve read similar theories for anxiety and PTSD, our connections stay strong reinforcing past memories to keep us vigilant and safe.

This is me rambling and I hope not being stupid or offensive with these curious thoughts. I only look for similarities to figure out the puzzle of me. I don’t claim to be right, ever.

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.

 

Some questions have more than one right answer

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Taking tests in school I never much cared for multiple choice tests that allowed for more than one right answer, as in check all that apply. I always had an uneasy feeling that I was being tricked somehow, or that I was missing something.

I get the feeling my doctors are feeling the same way right now as they sort through my symptoms and test results. It seems that I have more than one reason for some of my symptoms, and they could be working together in some cases. Don’t worry, I’ll explain.

So let’s narrow this down to one issue I have right now out of the dozens. We are actively working on vestibular dysfunction. The vestibular system is a complex combination of eyes, ears and central nervous nervous. I have several abnormal symptoms, but I want to focus on just one to show how difficult this process is. I have trouble standing on uneven surfaces. By trouble, I mean I get disoriented, a dizzy, lightheaded feeling comes over me, my vision dims, my chest tightens and it gets difficult to breathe, my knees buckle and sway, my leg muscles spasm and tighten, I get nauseous…depending on what it is I fall over, nearly pass out, or need help getting off the surface. Examples are squishy snow, mud and sand. Memory foam. It takes forever to find shoes without memory foam now, but it is absolutely evil. Basically any type of foam. They have a blue bit of foam they keep pulling out at the doctors or physical therapy that I now refer to as the blue bit of doom. It looks like this.71-ZQEqun2L._SL1351_.jpg

Seems innocent enough. But when I stand on that, I completely malfunction. Okay, the first time it was a complete shock to everyone and I did almost fall and we all went “what the heck was that?” But now they pull it out, and I say I cant stand on that, they give me a bar to hold onto and a couple of spotters and allow me to ease my weight onto it.

So it shows a problem with my nerves, that part is clear. But where? The physical therapist was explaining to me that my legs don’t seem to be getting clear signals back to my brain. When we encounter squishy surfaces it engages our balance system and our brain has to make all  these tiny corrections of flex and relax. It seemed like the “relax” portion of the messages were not coming back, so my legs would get tighter and tighter only, never correcting for this position, completely lost and confused.

So I’ve been mentioning this to several different doctors now and with the new data, it may not be all from my lumbar spinal cord injury, but a processing delay in my brain as well. Like all these confused signals jam up my brain and it can’t keep up like it used to. This is my current understanding anyway.

What do I do with that? Meet more doctors of course. I see a spine rehab specialist tomorrow to see if he can help sort out which of this stuff is coming from the spine and which is coming from the brain and then maybe we can make a plan after that. I’m extremely anxious but also a bit eager to meet this new doc tomorrow. He is basically the guy I should have met nearly 30 years after my first back surgery went wrong and my parents didn’t let me have aftercare. I’m hopeful he may have some tips or meds for me to help with all the issues that come along with a spinal injury at waist level: bowel, bladder, digestion, twitching legs, legs moving in sleep, muscle spasms, muscle weakness, drop foot, knee pain…. and now how it has affected my central nervous system, chronic sleep issues, migraines.

I’m very curious if he has another piece of this puzzle, and maybe some advice to make my life slightly more comfortable. It’s going to be difficult and embarrassing to discuss some of these private issues, but I feel I’m up to it. I have my notecard with a checklist so I don’t forget anything. I takes months to get in and see a doctor like this, better be prepared for your 10 minutes with him. I’m only half joking. I’m sure I will be assessed by a PA or fellow or student thoroughly and then the doctor will try to dismiss me, and it will be up to me to make my case both interesting and valid. I’m also being realistic. I understand I have had this injury since I was 12. I am not asking for a cure and I know it isn’t likely that they can improve the conditions of the nerves themselves at this point. But I want to hear him tell me that AFTER he has done some testing and really considered my situation. Which I know means hours of poking and prodding, likely some nerve conduction tests which are not pleasant at all. And hopefully some other tests or procedures that I don’t even know exist that is brand new and high tech and showing promise with incomplete injuries like mine. I’m just so tired of them giving up on me before even starting, so please new doctor, please be open minded.

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.