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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.

Surgery story, part 6

Saturday morning I woke up feeling hungry, actually hungry, stomach growling and everything. My liquid breakfast was not satisfying at all. The beef broth was gross, plain chicken broth I can handle but this stuff was vile.

When the doctor came in I asked to be advanced to real food, maybe some fruit? He was concerned I had not had a bowel movement yet and I countered logically that I have had no solid food yet…I mean I’m good but I can’t make something out of nothing.

PT guy came for me and we walked to the end of the hall by the nurses station, then he gave me a ride in the wheelchair to the PT room. I remembered a room like this from being 12, various ramps, bars, steps, platforms, even half a car for practicing. He took me to the steps, tied a safety belt up around my armpits, and asked me to walk up the stairs. First I tried it using both railings, then with only one side like I have at home. I felt it pull in my hips and back, but my legs felt strong. I got to the top much more easily than I thought I would be able. Down was even easier. I may have audibly woohooed here, as he gave me a puzzled look. I explained i couldn’t do this easily before surgery, that my leg was much stronger now. I did it twice and started to get tired so we stopped.

He didn’t wheel me back to my room, only back to my hallway. He asked me to walk the rest of the way. I was already tired but he said we needed to build up my stamina. So I did it. Slowly. I think some molasses covered snails passed me actually. But I did it. Woohoo for stamina.

Back in my room an aide came in to help get me cleaned up and changed into a fresh gown. Her idea of helping was different from mine though. She put everything in the bathroom, walked me there and left. I told her I couldn’t bend or reach my legs or back and could she help? Her response was that she had a horrible headache, about to explode, and had to go sit down. So I got back in bed half clean with what I could reach by myself and I would ask hubby to help me when he got in later.

I was disappointed when lunch was more broth and jello. I asked the nurse if the orders were changed? She said not yet, but she saw drs notes that he was going to. I said OK. But then i told her how hungry i was and that i was dying for some fruit. She came back in with a few fruit cups hidden in her pocket. I could have kissed her! She smiled and said Shhhh like it was a big secret and I smiled back before digging into the best tasting pears of my life.

Then I heard a familiar voice, my son. Hubby had brought my kids to visit. They looked scared at first, I tried to let them know I was ok. My youngest got in bed with me, I put a pillow on my belly so he didn’t bump my incision. He liked putting my bed up and down. They brought me flowers, a stuffed bear, candy, and a duck figurine. My middle guy didn’t make eye contact with me, he was struggling. My daughter was chattering away telling me about her week.

Then a helicopter flew near, my room was next to the landing pad. And my youngest seriously must have had his own flashback or something like it. He says, that’s like the one I rode in…I can’t feel my legs…I can’t see…

I yelled to hubby to catch him before he hit the ground and he just made it. He nearly passed out, was all in a cold sweat. We gave him ginger ale and turned on the TV. Hmmm. Guess little guy remembers his icu trip to the special childrens hospital in the helicopter about 2 years ago when he was only 5. And seeing his mom in pain and inflated and all bruised everywhere was bad enough without the helicopter reminder. Poor little guy. He was OK though.

My sis in law arrived soon to take the kids to her house for the night. We planned the timing so their visit with me would be brief, for them, and for me too.

Then I heard another familiar voice. My oldest brother was there. I was somewhat surprised he had come, especially since  earlier today was mom’s actual funeral. Hubby said he brought his whole family, so I decided to visit with them out in the hallway, not enough space in my tiny room.

I was shocked that walking was getting easy, that I had already recovered from PT earlier. I stood and walked and chatted with my brother, his wife and several of his kids until I got too tired and shaky. I felt special and loved. He said the funeral went well and he was so pleased my surgery went so well I was up and walking.

When I got back in bed, I realized I may have overdone it. Ok definitely had overdone it. My back went into spasms. That wonderful nurse saw this and brought me a giant sack of ice nearly as big as me, asked me to roll to my side,  and lean against the ice like giant frozen body pillow. The ice helped in a few minutes and I fell asleep. I woke up soon, feeling very cold, but much better. I asked hubby to move the ice and I was thrilled to see dinner had come, with mashed potatoes! Real food! Nothing tasted great, but with my numb tongue and growing hunger it didn’t matter much. My belly needed food. I still didn’t eat much, I felt full right away, but it was a satisfied feeling.

I slept well that night, in between the poking and prodding of course, and the constant calls from my roommate. She was 79, often not entirely lucid, quite loud, quite demanding. She would ask for nonsensical items with the call button and whoever answered was always polite and always sent someone to check on her.

The next day my sis in law came to visit, the one that went to my mom’s memorial. She brought more flowers.

I didn’t have so many visitors or support during my surgery when I was 12. I was alone for nearly all of it. AF stopped by most evenings after work. Mom only came once when my brother drove her, too afraid to drive to the big city. So for 2 weeks, I was alone there. Alone for all of the tests and PT for a newly paralyzed girl. I don’t remember being afraid or lonely. Abused kids aren’t entitled to feel that. So I didn’t. But I feel it now. I look at my kids, and can’t imagine ever leaving them alone. So I feel now what I couldn’t then, and I understand the depth of my pain and PTSD. I’m ready to care for this woman, that as a child was uncared for. I’m no longer ashamed of the girl within. I understand her, and want to help her.

Surgery story, part 5

My stomach announced its awakening with intense cramps that tugged at my incision. I knew this was a good sign, but it did not feel good. By morning I was happy to say yes when the nurse asked if I was passing gas. One of those things you don’t miss until it’s gone I suppose.

My surgeon came in to see me that morning and I was so happy to see him. He told me briefly about my surgery, that it was a success, that he decompressed the nerve and restored full function, that he stabilized and restored balance, but we would talk more later and all I had to do now was rest and heal. He was beaming, happy for me, and proud of his work. His positive energy is contagious.

He said he had to catch a plane and would be out of the country for 2 weeks but his team would take great care of me and call him every day.

I stopped him leaving by asking about my numb tongue.

Suddenly his face changed. His smile left. I had never seen him like this.

There were a few events that could have caused trauma to your tongue though we did our best to minimize it.

One was a serious complication you need to know about, and could have been life threatening if you were at any other hospital not equipped to handle it.

(OK I wasn’t really liking this conversation. No one said anything about complications. I had no idea what he was saying, and it was super scary, he was so serious)

While you were sedated, already deep under anesthesia you had an extremely rare laryngospasm causing you to not receive oxygen for some time. It was required that you be extubated, as you crushed the tube, treated with medications to relieve the spasm and reopen your airway before a new breathing tube could be inserted. This is an extremely dangerous situation and you need to make sure all your doctors are aware of this before any future surgeries you may have so they will be prepared for this possibility. You are fortunate you were at this hospital with my team when it happened.

(Oh f*ck that doesn’t sound good. Wow. Thanks for not letting me die?? Alrighty then. But all I said out loud was)

oh…ok

So even though every care was taken, it is possible your tongue was pinched during this process as it had to be done quickly.  Also during the transcranial nerve monitoring an electric current is delivered through your scalp that causes your facial muscles to contract, including the tongue. It is possible all of this has caused some trauma and irritation to the nerve roots of the tongue that should reverse in time.

(What he actually said was longer than this, included more medical terms, and scary stuff like various direct mouth injections, flipping me over, packing my mouth with gauze, hard to see my face when I’m laying on it and contractions with current need to be strong enough to travel the length of my spine…and I got really tired listening to him. I couldn’t hear anymore of what I had been through. He answered my question…and then some…for my tongue might be numb. But he had no idea how long to expect. He said if it was still numb two days after surgery, then it would likely take weeks or months)

Oh…OK…thanks

He peeled back my bandage to peek at my incision (rolling over wasnt AS bad today) and said it looked good, only some mild drainage on the bottom. Then he left.

After a liquid breakfast, PT came in again. This guy wanted me to take a walk. I raised my eyebrows and thought skeptical thoughts, but of course I said OK. I always say OK. My hand was still inflated, but I could get my thumb and pinky wrapped a bit around the walker today, mostly I still had to rest it there on top. But this walker had wheels, so I didn’t have to lift it like the one I had when I was 12. I only had to push it slightly and it moved. I no longer hated this walker, it was becoming my friend, my path towards freedom.

Look at me go! I could race past ummm, no one actually. But I didn’t care. It felt so good to be walking, well, emotionally good. Physically it hurt. Each step pulled and tugged on my back and belly. PT guy asked me to walk out to the hallway. I walked past my roommate, first time I had seen her, and eventually I made it to the door. He asked me to stand and rest a moment, then head in the direction of the elevators ahead. I was slowing down, which I didn’t know was possible. PT guy guided me to turn around and head back. By the time I reached my bed, I was sweating and breathing hard. I had walked about 30 feet and needed a nap.

When I woke up I noticed my left arm hurting, and noticed swelling around the IV. I called the nurse. She took it out, I had blown another vein. This one didn’t inflate too badly. She started looking for a spot to start a new IV and I was bruised and swollen or bandaged everywhere. They were doing several blood tests to check electrolytes and hemoglobin to see how i was recovering from the blood loss, so i had bandaids everywhere. The nurse called a special IV team in that used a vein finder, it shone a red light and like magic my veins appear. Even with the special team and tools, it took 5 more attempts to get one in, and it was nearly in my right armpit, not exactly comfortable.

After a liquid lunch PT guy returned and wanted me to start using the regular bathroom in my room. I wished I had the closer bed, the walk seemed so far, but of course I said OK. I’d do about anything to upgrade from the bedside commode. I still needed an escort to walk with me, but they left me alone in there, much better.

Then transport guy came with a wheelchair and said time for x-rays. Again? PT guy was still there, so he put two pillows in the wheelchair and showed me how to get in and instructed the guy to be gentle. I had to hold my Walker on my lap/feet so I could have it with me to stand for the x-ray.

The standing x-ray was easy. Then she wanted me to lie on the hard metal table. I should have refused, but everything else was going so well I thought I would try and be compliant. It hurt. It hurt for several hours. And it was for another abdominal x-ray because the one yesterday in my bed wasn’t a clear picture. My stomach is fine! It will be fine soon!

A Dr came up later and asked me again about passing gas, yes, passing stool, no.

Then an aide comes in and says she has an enema for me. What? ??? I was so tired, in too much pain to fight. She has me stand and lean forward and comes at me with a squeeze bottle. Let’s just say the contents did not go where she thought it did, which was fine with me, as I didn’t need it. I also didn’t need to be all wet now. She handed me a towel and left and I shook my head in disbelief.

I slept until my liquid dinner. I confirmed each time that I do not like orange jello. But the cherry ice was superb. I tried not to think about why my throat hurt, that I had a rare complication and was within a minute of death. I used to wish for death. Was that my wish being granted? Did something happen to change it though? Why am I not only alive, but with this amazing outcome of restored sense and strength in my legs?   I feel so many new sensations, the blanket, my toes rubbing together, the coarse texture of the hospital grippy socks. I also notice a lack of pain, no more crushing, or zapping, or twitching, or jumping. My legs are calm, happy, and move when I ask them to. I fall asleep moving my toes and ankles up and down, up and down, up and down.

I wake up with pain in my arm. Yup, the vein has blown. The nurse stops the pump and removes the IV. I tell her how difficult it was to place that one and that it only lasted 8 hours. I asked to please have no IV since it was only fluids, and I was drinking fine, not vomiting. She asked Dr and I got permission to go overnight without IV if I promised to drink a certain amount of water. I agreed.

Without the IV, my arms started deflating, and I started peeing unbelievable amounts. I overflowed the measuring ‘hats’ they place to keep track. My poor bladder couldn’t hardly keep up, I’m sure my kidneys were tired too. By morning my hand and arms were normal size and I was exhausted. I couldn’t help wondering if they were giving me too much fluids all along. I felt SO much better without that IV.