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Internal Conflicts

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I am not at peace. Nothing in me is at peace. I sense the battle, I feel like I am fighting, and its because I am. Even within myself, my own systems, my own body parts are at odds, creating pain and conflict.

I could give so many examples, literal and more abstract. The point I’m trying to make is a concrete one today though, as I discover yet another physical issue, a malfunction, a deformity of my bones. I can poke fun a bit today, because yesterday I cried. I’m done crying so I am dealing with this the only way I know how.

So my big toe has been hurting. Not a major concern to me, it has hurt most of my life, but much more so recently. It aches after I walk. I assumed it was due to a few factors: a horse stepped on it when I was about 7 and I received no medical care, it is on my weaker leg with drop foot, I stomp and stub and don’t walk properly on that foot for most of my life. I figured it was hurting more now perhaps because I am walking better? Using my toe more? hmm. Or do I have more feeling in that foot now since the recent back surgery? Was it always hurting this much? Not sure.

What I do know is that it never used to look like a zombie toe. Yep. Now after I walk, especially on uneven ground like gravel or hills, my toes fills with blood, like internal bruises. Black plague? Despite appearances I don’t think so…so I went for an xray and my doctor says nothing is broken, maybe I sprained it, and I should get new shoes. Umm okay.

6 weeks and a new pair of shoes later, I still have zombie toe. I saw a podiatrist yesterday. After more xrays, he is confused, and comes in the room with my favorite phrase. Wait for it, you know what’s coming, right?

“I’ve never seen this before”

Sigh

Okay what special lottery did I win this time? Apparently my toe joint did not grow correctly.  It has been this way for most of my life. Oh! The joint is too small, missing the cup, bulbous portion to support and lock, to provide balance. It is up too high and needs to travel too far to reach the ground, my foot needs to twist and flex to support me. My toe is hyperflexing at that joint, busting blood vessels. Not a birth defect but a growth defect, possibly related to scoliosis, or possibly that horse injured the growth plate, but it doesn’t look like it was ever injured or broken, just never grew properly. Apparently, limping on it for 28 years has concealed this issue, actually done me a favor but now that I’m putting all of my weight and attempting to correct my gait to use a proper heel toe roll step instead of the drag slap I was using, it is stressing my malformed toe.

Seriously

So I still can’t walk correctly or get up to jogging without breaking my toe off. Okay. Sure.

What the FUCK?? OKay, I am trying to keep my cool, but why does the universe not want me to walk or run?? Why is this so damn hard? I want to kick this stupid life in the face but it would hurt my stupid deformed toes so I won’t.

So now what? Well they sent me home with a make shift support brace made out of tape, spray glued onto my foot, that’s supposed to last several days if I keep it dry. I can retape it then myself maybe. Then they made molds of my feet and are making me custom orthotics to support my freaky feet. I’ll get those in a few weeks.

They said it will be very painful, because we need to move the bones, like braces on teeth, it will be a slow process. Part support and part correction from years of walking incorrectly. Tight ligaments, weak muscles, loose joints, a real mess. He added a new rx to my PT regimen for my foot for stretching and strengthening to help with gait. I may never walk without a limp. Yeah okay, just what I wanted to hear.

This tape already affects how I walk, since I can’t flex my foot, it is hurting my knee and hip to compensate. I feel all off balance, and its just some tape. Not looking forward to stiff orthotics in my shoes. That’s just me complaining, sorry. I’ll do it, and I’ll be okay. But I guess I was using my foot to make up for the lack of flexibility, now that my spine is fused to my pelvis, I am walking totally different than prior to this surgery. I feel like an android with new programming, just working out the kinks to walking 4.2, please wait.

I may have always been destined to have a limp, even without the neurological issues that arose from the back surgery. The shape of my foot is so strange. My mind is blown.

I struggled to find shoes that fit me comfortably as a kid, even before the surgery, and I was delayed in many motor skills, like I was 10 before I could ride a bike without training wheels. I was ridiculed for this, never taken to a doctor to see why.

I want to hate my body each time I get more news of my freakiness. I hold back tears until I reach my car in the parking lot each time a doctor says, woah that’s odd, and gets all confused about how to proceed. I want to start over with healthy bones and nerves. I imagine for moments what life must be like for people that just get up and walk with no effort, but that isn’t helpful. I can’t fight this. I can’t hate it, that would be hating me, and I know that gets me nowhere and I’m tired of being nowhere.

No, I need to accept this too, work on compassionately comforting my pain, coming up with a treatment plan to correct or at least slow the progress from getting worse. I need to protect myself. Those quick thoughts that yes, my parents should have done this for me 30 years ago pass over me, overwhelm me with anger and sadness, but then I let it out and let it go. That’s over. Its up to me now. I’m here and ready to do what needs to be done.

I have a feeling all of my bones are formed wrong if they xrayed everything and I don’t just have scoliosis but some other bone/nerve disease. I know my shoulders have similar issues like my toes. I’d bet you anything my hip, knee and finger pain would find anomalies if we investigated. I mean I use a weirdo mouse for my thumb pain and have braces periodically for my ankle, knee, elbow….hmmm. I’m trying to find the connection, asthma, migraines, scoliosis, joint problems, balance issues, muscle cramps, weakness and twitches, leg movement during sleep, sensory issues, feeling cold, fatigue, sleep issues. I found CMT which has some similarities but my feet don’t look like that, not yet anyway. I read some people did not get diagnosed until age 60-70 because it progressed slowly their whole lives. I think I may mention it to my neurologist anyway, get them thinking more holistically if I can. I know this is all connected somehow. I feel so certain my mom did not have fibromyalgia but whatever this mystery condition is, and that I have it, and so do my kids. Maybe genetic testing can be done? I’ll have to ask. I feel so certain that if I didn’t have the trauma component I would already be diagnosed. But I can’t stay on that thought either. Just keep pushing onward.

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I am Grief

It is starting to feel like I am grief, not like I am grieving, not like it is a process, or an emotion that moves through me, but a state of being that is me and completely has consumed me from so many directions.

When I allow myself to feel the sadness, I can’t see to type through the tears, so I need to hold it back to that familiar dull choking feeling that is now my life. That no one wants to see or acknowledge. Yes I am still sad today. Yes it sucks. Yes I need more time. I don’t want to apologize for how I am any more. I don’t want to explain it any more. I want it to be understood. But this is my life – I don’t get what I want.

I do feel moments of happiness with my kids, I do, but it is heavy, weighed down by this sadness, like I have an upper limit, or this shadow turning everything good a bit blurry.

I miss my mom. So much. So many things I want to show her, share with her, apologize for, explain to her. I see her everywhere, the songs she liked, the candy she liked, flowers she liked. I have paintings I started for her

I am also hurting as I realize I have not been treated very well here. I realized I did not receive one sympathy card, no flowers, no casseroles. Not even from my in-laws. Nada nothing. I did get one phone call from an aunt, the wife of my mom’s brother checked on me. That’s it. No one else reached out to me at all. Same for when AF died the year before. I know that was complicated, but everyone pretended it didn’t happen. I have lost both of my parents in the space of a year and a half, both were not even 70.

Then AF declared for the world to see that he never loved me, in his Will.

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That broke me. I crumbled. Whatever was holding me together for so many years was shattered then. I lost myself. I became suicidal. I lost my job. I was hospitalized. Then as I was recovering my mom got cancer and didn’t tell me. I had pushed her away while I was healing. I didn’t speak to her during her last year on earth because AF broke me. He stole her from me again. Just like as a child, he kept her from me, creating fear by telling me she hated me and never wanted me.

Hubby is still not understanding. He is not gentle or comforting for me. His volatile moods and rough responses are too much for me to handle right now so I generally avoid him. When I do specifically ask him to do something for me and I think he understands, he does not follow through, leaving me hurt and confused, feeling betrayed all over again. I say please don’t tell ___ to your mom, it will get around to your sisters and come back to torment me and I don’t want to deal with all of that. He agrees. Then an hour later I hear him, he is telling his mom ___ on the phone. (Next day his sisters text me about it…I hate drama, wanted to avoid it, none of their business, didn’t matter, leave me alone, I give vague responses until it settles down) I ask him later why he did that? He yells at me. It is my fault again. How was he supposed to know. Sigh. Do I give up or do I try again?

I don’t understand. I have such little trust as it is, these events don’t help. I am spiraled into emotional flashbacks because he can’t do what he tells me he will do. Did he not agree with me in the first place? Am I not important enough to grant or remember this request? Was he lying to shut me up, make me happy, with no intention of not telling? The doubts flood my brain as I try to make sense of what happened. And he says, Sorry (but he says it so rough like a bark, not sincere), whatever, What’s the big deal.

Then we are trying to plan a party for his parents. It keeps getting more and more complicated, with his one sister coming in from out of state, the one married to the guy I accused of being a creep a few years ago. That plus they are adding more events to the day, a family photo, lunch, dinner, coffee and dessert, all in different locations. I told hubby that I was concerned I may not be able to do all of that. Then he said to his sister on the phone that I may be too tired, not have enough energy to do all of that. My heart sunk. Is he ashamed of me? He can avoid this topic but not the one I asked him to? So I texted his sister after he hung up “Hey I’m not sure he explained it very well, I want to do everything you have planned and it sounds like a great day for everyone and your parents, but I am still struggling with social anxiety and other symptoms of ptsd that may make it difficult for me to do so many events all in one day. I don’t want to let you all down, I will do my best to manage but wanted you to be aware.” She texted back “ok”

So I am trying to be real with the only people in my life. I keep hoping they will one day be more accepting, accommodating, instead of only me being forced to hide my symptoms and smile pretty for them so they aren’t uncomfortable. I have no idea how I married into such an unsupportive group, I suppose some part of me knew this, guaranteeing my isolation and continuation of what was familiar. They aren’t pedophiles and psychopaths, but dysfunction runs rampant.

Maybe a supportive functional family is a myth.

I am trying to manage this grief that keeps trying to swallow me whole. But I noticed I have forgotten how to smile. It is no longer natural. I started practicing in a mirror and those muscles feel so heavy and I can only produce an odd crooked grin.

I am turning 40 very soon. I have no plans. No party. No friends. No extended family, just my kids.They are the only humans I feel safe with, can feel happy with. I hate how much I need them. My daughter is my best friend, we talk about everything. I already fear the day when they grow a bit older and I lose them. Then I will truly be alone on this planet. Until then I will try to cherish the moments and try to make this creepy grin into a real smile and try not to think about how unimportant I am to everyone else.

Good day dear cane

I have officially put my cane into the back of my closet. Woot! Woot! I am walking steadily and with more strength each day. I don’t feel like I am limping.

I am incredibly slow, yet each step is solid. My stride is wider and more natural now. I am spending more time on the weak leg so it is more step-step and less stepppp-hop. 

It has been five months since my back surgery. The strength and balance gains in my weak leg are nothing short of phenomenal. After 27 years of feeling it grow weaker, this simply doesn’t seem possible, like it isn’t my leg. I have advanced weights and color levels in physical therapy. I am rebuilding muscle and nerve pathways.

I have cried a few times at PT, out of surprise and joy from my new strength and control. The therapists beam with delight and cheer me on, all knowing my story, well, my scoliosis story. I feel real and accepted there and cared for.

I still have a long way to go. My success is relative. My walking distance before my leg fatigues is 540 feet, but used to be 100. I have worked up to using 2 pound weights with my arms. I still have negative range of motion in my ankle, unable to bend it up to a right angle, but I am only 1 degree away now, started at 5. 

I have many other metrics and measurements we are tracking. Some seem so pathetic as I regain core body strength from this surgery. Using my arms is still very painful. Pain wraps arounds my ribs and lasts for days for attempting something simple, like lifting a canteloupe.

Every day I do a bit more and try to be patient with the slow pace. The surgeon told me it would take a year to recover, but hearing those words and living those words are two different things entirely.

I want to walk my dog. She is about 50 pounds. I can’t do it yet. I can however, just this week push and turn a grocery cart without assistance, if it doesn’t have much in it. That was a major triumph to buy some (light) groceries by myself, without kids or hubby – or a cane – to help. I was tired and hurting a bit, but mostly just grinning like a fool at my accomplishment.

Listen to me

Listen to me

Hear my words, feel my thoughts

Before you react

Can’t you see what you do to me

Silence my words, invalidate my thoughts

Because you

Are more important

Your needs matter

And I don’t

I am not what you say I am

I am starting to know me

Too bad you don’t or won’t

Losing hope

Because you don’t even know

How to listen

Out of the crisis zone

Little guy is an awesome good natured little guy and handled his birthday disappointment beautifully. When his one and only guest arrived, he beamed with joy, and had a wonderful, if cozy party.

Hubby handled my absence and entertained the mother that stayed. He told me that the same thing happened to her a few weeks ago…no one showed for her daughters party. Summer is apparently a difficult time with sports and vacations and split homes.

Little guy did not seem to notice my absence, so absorbed in his friend. That was good.

We decided to take him out to a movie to extend the fun on our own since his party was so short. I was nervous, already feeling down and out of sorts, and not having been to a movie theater in a couple years. But I wanted to try.

At the theater, the previews had started already when we arrived. The theater was loud and dark and crowded. We could not find enough seats together and my anxiety was building. It started to feel dangerous. I was having trouble seeing and hearing, and now struggling to breathe and remain grounded. Crap, crap, crap.

Hubby started walking to the front with kiddos and I backed up to the back wall, leaned there and hugged my back support pillow, trying to breathe and focus. Hubby came back for me, looking torn, does he follow me or his kids. An usher came and asked how many seats we needed, and just laughed and walked away when we said how many.  Hubby pointed to some in the middle and by then I was near panic and could not pass by or touch those strangers knees. I wanted to get out of there. So I did.

I left the theater and sat in the food court by myself. It was bright and quiet out there. I did several grounding exercises and felt normal thoughts returning. What was I going to do for 90 minutes now? What was I going to say to kids for why I left? I could not get back in, hubby had the ticket stubs. I was thinking of ways to explain my situation without sounding entirely insane when hubby texted that he found seats and would come and get me.

He didn’t give up on me! I was so grateful.

The theater seat was horribly uncomfortable, curved ergonomically for someone that can bend their spine. I did my best to adjust and use my pillow but I was really hurting by the end. Other than that, the movie was cute enough, I started to calm down after about 30 minutes, and was pleased to be there with everyone and not excluded.

Being excluded sometimes hurts worse than the pain or anxiety, I am finding. It makes me feel I am not good enough and let everyone down.

I need to fight harder to find ways to be a part of my own life.

Best part was my lesson I learned from my 8 yr old on rolling with it and having fun anyway. We were cuddling later that evening and he sweetly said to me, “today isn’t exactly how I thought it would be…but it was a good day” and he hugged me. I told him I was so happy he had a good day and that I loved him.

And in THAT moment, everything was right in both of our worlds I think. Man I love that kid.

Hiding and crying

I can’t look at him. See his pain. He is crushed. My 8 yr old has a birthday party today. We are not good at social stuff and don’t know any parents in town. He sent invitations out in class and no one rsvp’d yes or no, so I assumed there would be some yesses that just show up.

Nope.

We are sitting here with pizza, cake, balloons, streamers, an empty house, and a devastated kid staring out the window in case someone shows up.

I don’t know what we are doing wrong. I don’t know how to fit into this small town if they never let me.

I feel like this is all my fault and I have failed him. He is supposed to be laughing and playing games. Not feeling like a loser. I don’t know how to fix this.

So I come up to my room, it is unbearable to watch him any more. I check my email and get a reminder from the ecard service I always used for my mom’s birthday. Her birthday is tomorrow.

Now I miss her and feel like I screwed that up too. I can never tell her happy birthday ever again. She’s just gone.

I don’t know what to do, except cry. I hope hubby doesn’t need me, because this is not stopping any time soon.

I’m sorry kiddo.

I’m sorry mom.

I love you both and I do my best. Sometimes it isn’t good enough.

Turtles can’t do yoga

Such an odd feeling to be trapped in your own body. Since my back surgery in April I keep having these odd moments of panic, nearly like claustrophobia, but the small, tight space I am confined within is my own body.

My initial back surgery as a child fused most of my spine but left a few vertebrae at the base in the lumbar L4-S1 and up in my neck free to turn and twist. My recent surgery extended the fusion and internal hardware to give me more stability against my scoliosis and kyphosis. My lumbar discs had deterioriated and disappeared. I had air gaps in my spinal column from so much slipping motion between my vertebrae. This has been corrected. I am no longer in pain. The nerve has been decompressed. I am getting stronger every day. However I had to sacrifice even more of my precious little flexibility.

This may not sound like much to those of you with a bendy, twisty spine. You can’t imagine what it is like to have a solid, rigid backbone. You can’t imagine having perfect posture and never being able to stretch your side muscles, do a sit up, arch or curl your back. I also can’t jump, as your spine is a natural shock absorber, being solid puts all that force onto one spot like a sledge hammer. Not that I was very jumpy, but jostly things like hay rides or roller coasters are quite painful. I have moments when tears come to my eyes now, out of frustration, not pain. I feel like I’m trapped in a shell.

The extra hardware alongside the original hardware have completely eliminated all the twisting. Good for pain. But it feels so odd. Like I am in a full body cast. I simply can’t move.

I can no longer rest my head on Hubby’s shoulder when snuggling in bed. I can barely reach the floor, if I drop or spill something. I have to do a combination of a sumo wrestler squat/ballerina lunge since I can only bend within my hip joint itself, nothing in my back at all. I started driving again this week, and I can barely see for backing up, only having motion in my neck, no longer able to twist at all. I can’t see or get items from the back of the fridge or cupboards. I can’t tuck in my kids, I have to hug them before they get in bed. I can’t reach my dogs’ tummy when they lay on the floor, only with my feet. I can tie my own shoes now, but I have to hold my breath and stretch first. I can’t do even the little bit of yoga I used to do.

I will get used to my new body given more time. I’ll keep working on my leg flexibility too. And I am so happy to walk around without the pain, truly I am. I only wanted to document how odd this experience has been as well, to reach for something that should be within reach, but it may as well be a million miles away because your unbendable body will not let you get there. Kind of like trying to stick your elbow in your ear.

And the toughest part perhaps has been Hubby thinking I am pushing him away, rejecting him. I just can’t get there from here. I can’t get comfortable. I can’t bend and lean into him. All I have is my arms.

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I feel like a turtle with a hard awkward shell. Turtles can’t do yoga either, and they always seem quite peaceful. I know I’ll be alright eventually.