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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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Accept or Fight

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When another doctor tells you that what you want is not possible and you need to accept that and set more realistic goals for yourself, do you do it or do you keep fighting for what you want?

I have seen a team of neurologists and neuropsychologists now.  They are all singing a similar tune. That I am different. That I have to accept that I cannot return to the previous version of me that I recall before the brain injuries. (I’m not sure if I have discussed the extent of my brain injuries here, I haven’t wanted to talk much about it and writing was so difficult before. But I have some serious cognitive dysfunction, memory gaps, processing delays, visual lags and disturbances, sensory overload….it goes on.) That skills like creativity, and certain personality changes, once altered, do not heal and come back, at least not identical to what they once were. I may be able to enhance what I have, but I will never be who I used to be.

I may never be able to do what I used to do.

Every time I think of this as a fleeting thought, the tears return.

Another esteemed doctor told me this again yesterday. They are well educated, at a great hospital, known for their expertise, and my gut trusts them. However, there is also something in me that is screaming they are wrong. Doctors once told me I may never walk again, that my weakened leg would never regain muscle tone. Well look who is out there attempting to jog. So I don’t accept “never” as a final diagnosis. I feel like I’m still in here, just slowed down.

He recommended I either apply for disability or try to work with a vocational counselor, but he doesn’t think I can keep up with the pace and demands of a job. That was harsh, but possibly true. I may be overestimating my stamina at this point because I want to be better.

He said that I am still traumatized, understandably, and that for me, the trauma never stopped. 40 years of trauma. He said that would be enough to break anyone. But add all my medical issues and it was like adding gasoline to a fire. And then on top of that, a stressful marital relationship, he says it was a cascade of events and none of them were good for brain health.

We talked about my social support network, and I said I’m all alone, completely. I have a few online friends and my counselor. We talked about how I isolate myself and why. I told him about how I have low tolerance for people, no matter how much I try, I can’t enjoy being with them, or think they aren’t good people when they make fun of others, are greedy, I catch them lying or cheating, etc. I said I try to turn down my moral standards but I can’t. He said something I never heard before. He said of course you can’t. You have never felt safe in your life. As soon as someone says or does something that makes them have any possibility of being a bad person, you go into self protection mode and either stop talking, leave the room, or hide or whichever other skills you have learned to avoid conflict and being noticed. This is to keep yourself safe. It makes perfect sense and is your core belief stronger than all others. Safety comes first.

My jaw dropped, and I felt angry a bit, kind of embarrassed, and I wanted to say he was wrong, to fight that, but as it sunk in, and so many social interactions spanning 40 years flashed across my mind. Holy crap. He is right.

Here I was thinking I was over my trauma and it didn’t matter any more. That I was an introvert and yeah maybe I was wired differently, or maybe on the aspberger spectrum, or maybe just get annoyed with small talk and petty people. But no. Every social decision ever has come down to safety.

He said the right trauma based psychologist may be able to assist me with that component and he would help me to locate one near me to work with. He said I can’t live the rest of my life alone, or I will continue to deterioriate.

I don’t know. I feel like I’ve tried. I feel like the people that accepted me never accepted the real me and when I do reveal the real me people run for the hills, unable to handle me. So maybe someone can help me find this tightrope skill of balance of how to build a relationship that I feel safe in, connected to the other person in a real way, without overwhelming the other person with my intensity.

I think figuring that out will help me in any job I may come to have in the future, whether I go through the disabled workers board or get one on my own.

I do know that I want to be a part of the world and connected to people, to good genuine people, and I just don’t know how.

I do know I’m not ready to give up and get on disability and never work again. I think I still have something to offer. I’m still smart in some ways, just really slow, and get tired out quickly. I’m hopeful the new migraine meds will start helping with some of that too. I’m hopeful that my family is done adding trauma to my life and I can finally move ahead on my own. My parents are gone, my brothers aren’t speaking to me. The hole hurts, but an empty hole is a dull ache, not like the tortuous pain of constant flaming daggers tossed at you.

I forgot to get you up

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That’s what my daughter said to me this morning. “Sorry Mom, I forgot to get you up”

My heart sank into a pool of shame. My daughter should not have to get me up. I try telling her I am already up, try to fake it that I was up and that everything is fine, but she can see how slow I am moving, that I am speaking slowly too.

Some people ask if I am a night owl when they see me online late at night. I say yes. But in reality my sleep issues keep me awake at night. I have trouble falling asleep, trouble staying asleep, trouble getting into deep sleep, trouble with horrific nightmares, trouble with sleep panic attacks, trouble with hypervigilance (I need all the lights on, lock the doors, close the blinds, tv on for grounding noise). PTSD tends to keep me awake until about 4am, so it is difficult to get up at 6am to help kiddo get ready for school and drive her at 7am.

I try to be gentle with myself. I know I am doing my best. I know I don’t sleep well. I know I am not out partying or something that should make feel guilty – And yet I still do – I feel guilty and ashamed and weak and stupid. I don’t want to be like this. I want to be strong and reliable, especially for my kids.

Driving this morning was extremely difficult and I am not even sure I should have been doing it. I felt like I was a bit drunk, like my thoughts were moving through molasses. I have to tell myself how to get dressed and drive, each step spoken out loud.

Seriously middle school starting at 7am is torture. This time of year is terrible and it will get worse with time change in a couple weeks. I will walk around even more zombie like. Doctors have not been able to help me with this. Therapists have not been able to help me with this. I feel better in the summer when I don’t have to get up so early. I have decided it is not SAD, it is not light deprivation or depression, it is sleep deprivation. My mom schedule is what wears me out this time of year. I do have depression, not denying that, but I don’t think it gets suddenly worse when school starts. I think I get physically exhausted.

I do nap during the day, but my hyperarousal only allows me to sleep for about 15 minutes at a time. If I do manage to sleep longer, the nightmares get me and I wake up sweating, screaming and the fear from those last for hours, while the images can haunt me for weeks, months sometimes depending how bad they are.

I am sleeping separate from Hubby right now, which helps a little to reduce the hypervigilance and multiple triggers and anxiety. Unfortunately we do not have a guest room, so we take turns who gets to sleep in the living room to spare our sore backs and necks from the old sofa or recliner.

Melatonin helps me get to sleep sometimes, but can make the nightmares worse. Keeping up on vitamin D helps. Too much of either makes me very hard to wake up in the morning. Exercise helps and except on very bad days I am doing my best to stay active and keep up on my physical therapy routine.

I don’t want any of this, but this is my battle to fight. I am so tired. I don’t feel like I am winning. Hell I don’t even feel like I am breaking even yet. Is this a winnable war? I am not so sure. I think I need to accept this is my life and make it work rather than keep trying for something impossible.

Operation: Feel Better

Last week something changed, another switch flipped and I decided I was tired of feeling like me. Tired. Drained. Empty.

I re-read my DBT binder from intensive outpatient therapy. Hmmm. I am not doing well with self care. In fact I was self hurting.

  • I was staying up until nearly 4am every night and staying in my room until noon.
  • I was not doing basic hygiene regularly, only when I needed to go somewhere outside the house, which is usually only once per week. (Actually two consecutive days, but my worn out brain figured yesterdays shower was good enough)
  • I was only going outside for counseling, dr appointments, running light errands. Not actually spending time outside, just walking from the house to the car.
  • I was not getting daily or even much weekly exercise.
  • I was eating poorly, even binged a few times.

So I did not suddenly see all of this in myself. No. What I saw was my children, turning into depressed couch potatoes. My children, who normally have so much energy we can’t contain it, barely able to move. My children saying, nah, don’t feel like a bike ride or going to the playground. My children lounging in yesterday’s filthy clothes, too tired to change. My children cranky, irritable, snapping at each other instead of playfully making jokes.

Wow. The transformation was incredible. What happened? They had no schedule or structure with school being out. We can’t afford any sports this summer with me not working, so they are all just home, with nothing to do. And with me in bed, partly recovering from surgery, partly my odd sleep schedule, they had transformed and were showing signs of depression.

My brain hurt at this realization.

My stupid binder was right. I was hurting myself. And my kids.

I tried telling hubby my concerns and he was quite unresponsive. He is working so much he was unable to comment on the changes I am seeing.

So I decided on my own to make a change. Because I am mom, I can do this. I can do for them what I can’t for myself.

I told the kids that starting tomorrow we would have one daily activity. It has some rules. They can help me choose the location, give input, but ultimately it is up to me. Here are the rules I created.

  • We will drive to this location, it is far enough from home to require this
  • We will spend at least 30 minutes outside (unless terrible weather)
  • We will be active during the 30 minutes, moving our bodies, walking, playing, etc
  • We will go to a new location every day

So we started this mandatory anti couch potato activity 4 days ago. We have gone to 2 playgrounds and 2 nature preserves. We have invented new games. We learned eggplants have purple flowers. We explored a lean-to someone built in the forest.

When we got home, they asked about setting up the badminton net instead of heading back to the couch. We all played badminton. That was a bonus, not forced or mandatory. The neighbor kids saw us playing and asked to join. Awesome! Yes!

So this is working. I started taking melatonin at night to get back on track. That plus daily sun and exercise is helping me sleep-at night.

I may not be making money, but I am a damn good mom, and I am finally seeing how important I am to them. I am giving them life long lessons, values, hopes, strength. All the things I need. Maybe, just a fleeting thought here, is it possible I do have these things, because if I see them in my children it is a reflection of me? Can I give what I don’t have? Maybe I am not as empty as I feel, it is all somehow hidden from me. Does any of this make sense?

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.

 

Botox for Depression and PTSD?? Maybe

I’ve had Botox, and I never thought I would. But not for cosmetic reasons. And I think I may be experiencing more than the intended benefits to my treatment.

I’ve always had migraines, but I’ve lost a year of my life to nearly daily symptoms of uncontrolled, unmanageable hemiplegic migraines. I tried changing my diet, managing stress, losing weight, adding anti seizure meds, calcium channel blockers, magnesium infusions…and I was still suffering. My neurologist suggested Botox and I kept putting it off, wanting to try everything else first. I was skeptical that it would be effective, how could paralyzing the muscles outside your head affect the inside of your head? It didn’t make sense to me. Plus I was not keen on having 50 needles poked into my head, silly me.

But I did the research, and I agreed to give it a try. I was at the point that I had nothing to lose. My quality of life could not get worse. I either spent every second in fear of a migraine, about to get a migraine, in the middle of a migraine, or recovering from one. An attack would last days to weeks, with the muscle weakness not recovering in between.

I had Botox for migraines in the end of March. That same day of my treatment, my mother passed away. Two weeks later I had spinal surgery. Needless to say, but I’m saying it anyway to be exceedingly clear, this a HIGHLY stressful time period. I should be suffering a worsening of depression, PTSD, migraines, etc right now.

But I’m not. I feel good.

Huh? What’s up with that?

I tried giving myself and my new counselors credit, which I did a little, but it didn’t add up. Something had drastically shifted in my brain. I feel lighter. I realized I haven’t been fighting away suicidal thoughts and images all day long. I’ve felt loved, and connected to my family. Instead of the horrifying void, the usual ache of emptiness, I feel the warmth when my kids hug me. This is new, spectacularly new, and amazing.

So I started thinking. Of course I started thinking, it is what I do best. Start up the old analytical engine. What happened? Why now? What lifted my depression? What did I do differently? I racked my brain until I had what I thought at the time was a silly thought. Hmmm, I never had Botox before… that was new.

Now you may be wondering if the Botox worked for my migraines, and I am pleased to report that I have not had a migraine since right after waking up from surgery, 5 weeks ago! This is the longest stretch of migraine free time I have had in years, and no hemiplegia. So is that enough to account for the shift in mood? Perhaps…but I don’t think so, because I used to only have a few migraines a year and still battled some level of depression and suicidal ideation most of the time prior to the hemiplegia.

So I did some research, and it turns out that Botox is actually being explored as a treatment for Depression. I was stunned. I’ll share some of the links to the research here in a bit, but the main idea for why it may work is fairly simple. Botox in your forehead prevents you from making several negative expressions, especially frowning and furrowing the brow from sadness, concern, anxiety, and fear. Preventing the face from expressing the emotion breaks the feedback loop those muscles send to the brain – the exact science behind preventing migraines actually. Put simply –  It gives the brain a rest and gets you unstuck, out of the rut.

So your brain gets less “I’m sad” feedback from your face. That’s a good thing. But take this a step further. You manage to go out grocery shopping, guess what, the people there get less “I’m sad” feedback from you too. They smile at you warmly because you no longer seem unapproachable. Suddenly your world is full of more positive social interactions instead of everyone asking you what is wrong.

I used to think the smile I plastered on my face was a good mask, a good disguise for my pain. But I can tell you now, after seeing the grimace actually gone, it wasn’t a good disguise at all. I only thought I was hiding it. It was still there in my eyes. This kinda wrecks a lot of what I thought I knew, but, that’s okay, because I didn’t like the world I knew.

Here are some of the guys studying the effects of Botox for Depression, Dr. Finzi and Dr Rosenthal. Here’s an excerpt from the results of their double blind clinical research:

Comparing the scores at the six week visit versus baseline, there was a significant improvement in the OBA group compared to the placebo group; there was a 47.0% reduction in MADRS scores for OBA, versus a 20.6% reduction for placebo subjects…

The MADRS is an interview given by clinicians to assess depression. I’ve included screenshots of it here (taken from http://narr.bmap.ucla.edu/docs/MADRSstructuredInterview.pdf) in case you are curious of the questions it asks. It is short, but because it involves a face to face discussion with the patient, it can provide an accurate snapshot of mood and functioning. They usually give me the Beck Inventory to fill out myself at my counselor’s office, which is similar, but I think could be less accurate.

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The conclusion of Finzi and Rosenthals study stated “There are several possible mechanisms by which OBA(Botox) may help alleviate depression. First, frowning may affect the way people feel about themselves when they look in the mirror and the way others respond to them. OBA, by reducing the level of frowning may cause others to respond in a way that influences mood favorably. Happier facial expressions may influence mood by facilitating more positive social interactions with others (Heckmann et al., 2003). Finally, in line with the facial feedback hypothesis that inspired this study, frowning may in and of itself be depressogenic . Thus, reduction in frowning may be in and of itself therapeutic. We suggest that the brain continuously monitors the relative valence of facial expressions and that mood responds accordingly. We term this emotional proprioception (Finzi, 2013), and suggest that it represents an important pathway for the brains’ evaluation of emotional states. According to this model, the brain continuously assesses the extent of facial muscle contraction and muscle tension by proprioception. One can view the state of corrugator muscle tension as part of a neuronal circuit involving the brainstem, with motor input from the facial nerve and sensory afferents from facial and trigeminal cranial nerves. OBA treatment of the corrugator muscle, would interrupt the normal circuitry, reduce distress signals to the brain and thereby influence mood in a favorable way. This model is also supported by work showing that OBA treatment of the frown muscles modifies emotional perception (Niedenthal et al., 2009; Neal and Chartrand, 2011) and amygdala activation (Hennenlotter et al., 2009). “

I am excited and hopeful by this research and by my own results. As someone who has literally tried dozens of psychiatric meds over the past two decades, all with little, no, or worsening affect of my mood, thoughts, suicidal feelings and imagery, lack of connection to others around me. I think my nervous system has always been on the fritz, overworked and overwhelmed since an early age. My parents didn’t smile at me. I didn’t learn to smile, I learned to frown or be tense. I learned not to cry. I learned to suppress. Botox in my forehead took away my control of that tension and suppression and gave those tired muscles a break, and possibly, those tired nerves a break too. Make sense?

Some of the scientists seem very against this treatment, despite early evidence it works well. I can tell you that I had no cosmetic concerns. I don’t even wear makeup on a regular basis. I’m so fair skinned I have avoided the sun my entire life, so I don’t have wrinkles yet, only freckles. The Botox did make me appear more relaxed and less sad, but not younger. I was actually more self conscious of my appearance as the injection sites left red marks across my pale forehead that looked like the big dipper constellation that took weeks to disappear. I did not feel better about that. And yet I was already not frowning and not showing my pain as obviously, random strangers were not making the “you look tired, rough day?” comments to me.

And as I said, this antidepressant effect was not my intended goal. I was attending therapy to decrease suicidal thoughts and thought I had months or years to go. I was just bopping around the house when I realized they weren’t there, and then I had to think really hard about when was the last time I had one, (it’s a myth you always miss something when its is gone) so I checked my journal and it was the day before Botox. It is in my journal. Nothing entered after that. Woah, right? No pill has ever done that.

Now did my mother’s death and those events give me some soul searching and freedom of spirit also? Yes of course. And the success of my spinal surgery was of uplifting. Maybe all of these things needed to happen in combination. Maybe only one alone would have only given me partial relief.

I’m not going to waste it though. I’m going to use my newly found mental energy to continue healing, focus on my PTSD therapy, creating and conquering goals that used to seem impossible because I was consumed with simply wanting to be alive and fighting off those dark thoughts. I want to be a better me, a better wife, a better mom. Me…but healthy. Hard to envision, but still I do want it, and I won’t give up.

Because don’t get me wrong. I’m not cured. Although I think Botox may have helped me get further down my recovery path, I still have stuck points and fears and social anxiety and insomnia and nightmares…and the list goes on. But my depression has lightened, I can even feel some hope trying to sneak in, like a foreign invader.

I joke and smile and sincerely enjoy more moments of each day. I still struggle each day too. I still struggle to get up out of bed, to take care of myself, to remind myself I am worth all this trouble. The difference is now when I struggle, I don’t immediately think death would be better. In fact, I’m starting to think that’s a horrible idea, and that I really should stick around and start living this life for me, somehow. I don’t know how yet, but I’m confident there is a life for me on this planet. Somehow. (That is supposed to sound triumphant, not corny, so if you get it, you get it, if you don’t, well, then you haven’t been plagued by suicidal thoughts for most of your life)

Surgery story, part 7, going home

On Monday about 8 am, the Dr told me I was going home that day! I was shocked. It was only day 5 and we had originally planned 7 days in the hospital.

I called hubby at work and asked if he could get off work and how soon. I wanted him there with me for the final discharge instructions and physical therapy so he knew how to help me get home. I was suddenly feeling afraid and overwhelmed, not ready to leave the safe hospital world that I had grown used to and wanted hubby there to support me as well.

Hubby called back and said he was leaving work, heading home to change, then would be up to the hospital. I expected him around 10 or 11. I told him which soft, loose pants to bring me, which top, and decided to go without underwear or bra as the elastic would be too painful on my incisions. I did not think to ask for my coat, thinking the cold rain would remind him of my need for that.

So much happened that final day. More blood work. Visits from so many doctors, physical therapists, occupational therapists, pharmacists, home care coordinators, social workers..so many people on a team making sure I was going to be safe and healthy at home.

It was a whirlwind of information, and I wished hubby would hurry. My lunch came and I called, he still had not left home. I was getting angry and hurt now that he didn’t do what he said he was going to do, and that I was all alone, and that he was going to miss the important information.

Sure enough about 2pm PT lady came for me and still no hubby. We went to the gym to practice the stairs to make sure I could get into my home and up to my bedroom. She had me walk without the walker a little, just holding her arm and hand, and that felt amazing. Then we practiced getting in and out of a car safely. I have to do it without bending or twisting- not so easy, that’s why we practice the maneuver.

This lady saw how thin my right leg was and asked about the atrophy. I explained that this surgery corrected 27 years of nerve compression, that I’m stronger and can feel it now. She nearly cried for me, and I nearly cried too, but I wasn’t letting myself believe it yet. Not for about 2 more weeks.

She gave me some other challenges, let’s see if you can walk up the stairs leading with the right leg then. I hadn’t even attempted that in 27 years. I said OK. It took a moment of staring before my leg did what I wanted, something PT calls ‘motor planning’, but then I did it.

Step up. Step up. Pulling myself up with my little right leg. It started quivering after about 4 steps, so we stopped to rest, but I felt like I climbed mount Everest. She wanted to see me lead with it going down now. I was scared. It used to buckle and give out. But I had two railings and a safety strap under my arms, so I said OK.

Step down? Yes! It held! I couldn’t believe my eyes or other senses. That couldn’t be my leg. I went down the 4 steps, very slowly, letting my right leg bear my weight for the first time in adulthood.

When I got to the bottom, my leg was hot, trembling, flexing. I could feel muscles inside of it. Angry little muscles, yes. But muscles working and firing. Such an amazing feeling. I so wished hubby had been there to see this.

PT lady wheeled me back to my hallway and said she was sad I was leaving today, she would love to keep working with me. Then she asked me to walk some more to see how it recovered. It hadn’t. My leg was quivering jelly. I was going to push through and drag it along and she made me stop. She said never push a muscle past fatigue, only up to fatigue.

I was shocked and it showed on my face. I explained that I was used to pushing past that point. She got a little upset and said she can’t imagine any physical therapist asking me to do that, that pushing past fatigue only causes pain, once you lose quality of motion you are doing harm not good. She asked me who told me to do that?

I said it was my dad….she put a hand on my shoulder and said she was sorry and we had a quiet moment of understanding. Wow. And woah.

So many years of abuse, and pain. I felt it all lift and float away in that moment when she understood. Because I understood. It wasn’t me. AF was a sadist. He enjoyed my pain. He taught me to hurt myself, to ignore signals to rest. He would say things like “no pain, no gain” or “nothing in life is easy” or “pain isn’t real it’s all in your mind, you can choose to feel it or not” or “quitters never win”. He was full of sayings like that to fill me with shame for wanting to rest. Well no more.

Now it got confusing as back in my room, the pain from PT was overwhelming. Dr ordered me Tramadol, a weaker narcotic i had not tried yet. I was willing to try, the pain was bad enough, and i figured it might help for the car ride too. The pill and fatigue made me spacey, but I swear two different doctors, a nurse, and the home care rep all gave me different instructions regarding my bandages and suture removal. Again why I wanted hubby there.

Finally about 3pm he did arrive. At that point we were only waiting for the final discharge which took another hour or so. I tried telling him all the information he missed before I forgot, which overwhelmed him, and he could tell I was annoyed but he didn’t know why. I was also dreading the car ride. Nearly two hours of bumpy torture coming soon….

A young girl arrived with a wheelchair. I asked hubby for my coat as he out his on, and he looked frightened. Ummm….I  didn’t bring you one, you didn’t ask for one. I tried not to be too hurt and annoyed by his thoughtlessness as nothing could be done now.  I was packed into the wheelchair, a pillow behind me, and all my gifts on top of me.

The ride down was alright, but it took hubby about 45 minutes to retrieve the truck from the parking garage. By the time he pulled up, I was in excruciating pain from sitting in an awkward unsupported position. I kept trying to shift in the chair but nothing helped. My spine was on fire.

They said I was not allowed to sit still for a 2 hour car trip and that we had to plan a stop at least once to get out and walk for 10 minutes on the way home to keep blood flowing or something. We pulled into a rest stop about half way home. I got myself out of the truck, but it took an enormous effort. I was stiff and sore. Hubby gave me the walker, but I couldn’t make it move in the parking lot. There was too much resistance compared to the smooth hospital hallway. I went about 5 feet and started crying, tears streaming down my face from pain, fear, and frustration. I asked hubby to walk me back with his arm, the walker was too difficult. It was much harder to get in the vehicle this time than at the hospital, I had to push through the pain and the chills from walking in the cold rain without a coat made all my sore muscles angry and tight. Once back in the truck, he cranked up the heat until the chills subsided, then we headed home again. I hoped it was worth it to follow that advice to stop and walk because everything hurt so much worse now. Every bump in the road went directly into my spine and there was no way to soften the blow.

Finally we made it home. I struggled to get out of the truck. I could barely move. Every muscle was stiff and in spasms. Hubby got me to our porch steps, somehow I went up, only three but it felt like I was ripping apart inside with each step. In the house he had a chair for me near the door. Nice, but it had a curved back so I couldn’t actually lean back on it without causing extra pain, even with the pillows. I sat there a moment and decided it would be best to get in bed.

Upstairs.

We started the longest, slowest journey. Step up, moan, whimper, breathe, pause, step up, grimace, whine, breathe, pause, step up, ouch, groan, breathe, pause….until I made it to my room.

Then I stared at my bed. My flat, non hospital bed. And I lost it. I started sobbing. Why did I come home? I wasn’t ready! That trip was horrible torture and now I don’t have an adjustable bed, I can’t do this. I should have stayed in the hospital longer.

Hubby stared at me all bug eyed and helpless as men do with crying women, but even worse because if he touched me it would likely hurt, and he usually says the wrong thing, so he just stared in silence.

In a moment I calmed down, tried to roll into bed, but it was too low and i yelped in pain. Hubby had bought some wedge shaped pillows and asked if I wanted to try it. It made it easier to roll and I got in, but it seemed so hard, like laying on cement! I could feel with my hands that it was soft though, it was only my sore back making it feel hard.

Hubby brought me ice gel packs and slid them under me, covered me with blankets, and then I just waited for the pain to ease. I took a tramadol they sent me home with, but it only made me nauseous and did nothing for the pain. Somehow I made it through the night, by breathing, visualizing, and distracting myself with tv and candy.

I wanted hubby with me that night but was afraid he would bump me in his sleep. We placed a giant body pillow between us in the bed as a barrier, later we named it the “chastity pillow” to be funny, but it effectively kept us apart and me safe.

I discovered I could walk to our bathroom without the walker by holding the dresser, the bedframe, and the walls. PT lady calls this furniture walking. My tiny room and hallway really made the walker impossible upstairs. Plus I wasn’t having balance issues, I was ready to walk on my own and try out my new legs.

Just as soon as I napped.