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Posts Tagged ‘recovery’

In my quest for alternative pain relief, I’ve recently had a couple massages. The first one was quite gentle and while it was enjoyable, the effects weren’t lasting beyond about an hour. So for the next one, I told the massage therapist to dig a little deeper, work on the muscles. The muscles in my back and neck are very, very tight, she admitted, but after working on them pretty hard, she said she felt they’d softened a little bit.

I felt okay during the day, but by early evening, the muscles in my back, neck and head were just screaming at me. Moving hurt. Breathing hurt. I was wishing for some bigtime pain meds, which don’t really exist. I have no idea if further massages are a good idea – if they can actually cause a more permenant softening of my hard and stubborn muscles, or if those muscles will just hurt more at the intrusion. Must do some research on that before the next scheduled appointment.

I was a bit nervous about my assessment for the pain clinic this morning, imagining this making my early-morning stiffness even more extreme. While you have to be in chronic pain to get into the program, you also have to have the stamina to hang out in their program all day.

I made it to my appointment on time, and it didn’t even feel hideously early. They asked me all kinds of questions about my pain and functioning, including one I hate. They asked me to rate my pain on a scale of one to ten, ten being the most unbearable pain you’ve experienced. This was a question I got in the hospital a lot, whenever I told them anything hurt.

The thing is, the ruptured colon totally reset the definition of number 10 for me. Compared to that, nothing else gets higher than maybe a 5 or 6. I figure the rupture probably occured around 9 pm, given that I suddenly felt a great deal more pain than before and ended up collapsing on the bathroom floor. But I didn’t get into surgery until 11 am. Add to that the dehydration caused profuse sweating from the pain and the fact that they wouldn’t allow me any liquids, and I felt really, really bad. I felt so bad that when the surgeon told me one possible outcome of the sugery was death, I didn’t care. I really didn’t. This is basically what I thought: “Okay, whatever. Just knock me out now.” During what could have been my last conscious moments on this earth, strapped down to the operating table, all I could do was complain that the mask put over my face to sedate me didn’t have a good enough seal and I wasn’t reaching unconscious fast enough. “Why am I still here?”

They say you can’t remember pain, and I’ve always found that to be crap. I remember my legs hurting when I was a child, remember how the pain felt. I can easily remember how badly my body aches when the FMS really flares, how migraines feel, how labour and delivery felt. But I cannot remember the pain of the rupture. I cannot bring it to mind at all. I only remember feeling miserable and moaning over and over, like a mantra, “It hurts, it hurts, it hurts.” I felt badly about that, worrying that I was upsetting my mother, who was standing beside my bed helpless to do anything at all to make it better, but I could not stop the moaning. I remember begging for sedation, not understanding why they couldn’t just knock me out that moment, even if they weren’t ready to operate.

Needless to say, that experience really messes up the bell curve when it comes to rating my pain. Assigning a number to a feeling is difficult enough as it is. So when they asked me the question this morning, I decided to remove the rupture from the curve, since it was pulling everything out of wack. I decided that when the nurse says that number 10 is the worst pain ever, she really didn’t mean pain that makes you uncaring of your own death, perhaps even welcoming of it. I decided that unmedicated childbirth could be the worst pain, or maybe the vicious migraines I’ve had, which make me want to hide in a dark room and not move, but have never had me contemplating death – those could be the 10.

After the assessment, which included many questions about my life and how I handle my FMS, the doctor told me that she wasn’t sure how much their program could really do for me. A lot of what they do, she said, was help people come to terms with their conditions and then learn how to appropriately pace themselves, something the doctor thinks I have done long ago. (J disagreed when I told him, saying I don’t know how to pace myself at all). Despite that, she did think that maybe they could still help. She said knowing something (how to hande one’s illness, for example) and doing it are not the same thing, and perhaps having everything in one place and working thought it intensively would be of benefit to me. That was pretty much the conclusion I had come to as well (although I was secretly hoping they knew some stuff I don’t already, and this meeting kind of popped that bubble).

All that being said, they rejected me. Thanks to my Nap, I’m not at the point where I could handle the intensity of their course. That was what I feared would happen. However, she suggested re-evaluating me in September. She did say that it was just a matter of time. I just need to recover from, as she put it ‘this insult to your body’ and eventually they will accept me.

I consoled myself when I left by popping over to a large and marvelous garden centre near there and getting a couple little plants for the few gaps still in my front garden. Green things make everything better in spring. 

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Wrote this yesterday, didn’t get around to posting it until today. What can you do …

You know what I just realized? Today is my 2-month anniversary of waking up from the coma. That’s it – just two short months. I woke up on February 29th, which is kind of cool. Also, I woke up on day 18 of my coma. Eighteen is a very significant number in Judaism. The letters all have number values, and the word ‘chai,’ which means ‘life,’ has the number value of 18. So coming to life again on the 18th day is also pretty cool.

It is very, very hard to imagine that it has only been two months.

I remember how helpless I felt. The rehab nurses would come in every day to work on my muscles and would try to get me to move my legs – just lift the knee, lift the ankle – and my traitorous legs refused to move.

My hands were in claws, curled up. The times I was awake and no one was in fussing with something medical, I would go over the physio exercises I had been given for my hands and arms, over and over again. I wanted to be able to write again, to feed myself.

I remember the first time I fed myself all alone. The nurse poured my box of cereal into a bowl and put a cloth on my chest to serve as a bib. I dragged the bowl onto my chest and, ham-fisted, spooned the cereal in. A fair amount only made it onto the bib. I still got tired of eating it before it was finished. I hadn’t the energy or strength to put the bowl back on the table, though, and had to wait for the nurse, bowl on my chest.

When I got a little stronger, I would insist on eating dinner myself, slowly cutting off a small peice of meat and manovering it to my mouth. J and my SIL admitted later that it drove them both crazy to watch how slow and awkward I was, that they wanted to just grab the cutlery and feed me.

I remember that I always felt as thought I could not breathe properly, and that was partly because I couldn’t. For at least the first week, they’d put me back on oxygen for nights, and randomly throughout the day when my oxygen fell low. They tested me constantly, checking my oxygen level, blood sugar level, blood pressure. Four times a day, they stuck a needle in my fingers for the blood sugar. Three times a day, they stuck a needle in my belly to give me heprin ( blood thinner to prevent clots). Those burned like a match being held to my skin and the bruising lasted so long the last of them has only just faded.

I insisted on having a fan blowing at me all the time, because then I felt like I could breathe. My family quickly learned to stay out of its path. After a while, it didn’t have to blow directly at me, and then I graduated to not needing it at all. I still can’t breathe properly, though. I still have pleurisy, which means the lining of my lungs is inflamed. I cannot take a deep breath, but I can take a deeper one than I could a week ago. Hiccups feel exactly like a hard punch in the chest, so when I have the misfortune to get them, I sound like this: “Hic! OW! Hic! OW!”

The first time the nurses tried to get me to sit, they pulled me up into sitting position on the side of my bed, three of them surrounding me. I put my fists on the bed to steady myself and they let go. And, just like a small baby, I began to topple over even as I tried to hold myself up.

So they sat me in a chair instead. They took a harness, the kind one would use on a small whale and, rolling me to one side, they put in on the bed. Rolling me to the other side, they had it completely under me. The hooked the loops on each corner up to a machine hanging from the ceiling and lifted me off the bed, swung me over to the chair and lowered me. The first time I sat in the chair I stayed half an hour before I was exhausted, and was lifted back.

As soon as I got comfortable in the chair, the nurses insisted I get there myself. They were always upping the ante. They placed a walker in front of me and hauled me to my feet. As I stood, feeling excruciating pain in my calves and feet, I looked down. My feet were slightly curled under and looked exactly like my grandmother’s feet had and in that moment, I believed I would never again walk normally.

Once I got used to the two-step shuffle it took to get from bed to chair, the nurses handed me the walker, pointed to the hall and said, “Go.” I made it 25 steps the first time. They counted. I was as delighted as a small child and celebrated by buzzing around the ICU in my wheelchair, with the nurses cheering.

I made it 50 steps the next day.

Today, I walked the regular loop with Jasper at the dog park. I walked for half an hour, which means that loop took me about twice as long as it used to, but still, I made it through the whole loop. And that was after getting a few groceries and before picking up the kids and taking Asher to get a new fiddle.

Look at me – you’ll see no hint of what I’ve gone through. It’s all written on my body underneath my clothes, the deep red scars on my belly, my torso, under my left arm. They are my constant reminder of much I’ve gone through to get back here. That, and the looks I sometimes see on the faces of my parents and J. Two months clearly is not as long for them as it is for me.

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Miracle

Miracle: an effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to a supernatural cause; such an effect or event manifesting or considered as a work of God.

That is so not me.

I’m starting to get out and about more. The first day I went to pick up the kids from school Maya, who was home ‘sick’ was mortified. “But, everyone will want to talk to you!” This is her idea of hell – being the center of attention. When I was first sick, basically no one bothered to take the kids to school for the first week, and when it was time to return, Maya got two good friends to form what they called the ‘hug patrol.’ The friends’ job was to watch for approaching teachers who may want to show her some sympathy and distract them at all costs.

The truth is, I don’t love being the center of attention either, but I was looking forward to seeing all the people I hadn’t seen in a while and I accepted that people would be pleased to see me up and about. I got enough of that reaction from hospital visitors to understand that.

Yesterday, I went a step further and went into the Jewish community center where J works. I couldn’t go two steps without someone new coming up to marvel at my continued existance. I understand that this is going to keep happening for a while and even appreciate it. We live in a fairly small and, we found out, incredibly supportive community and that means lots and lots of people who worried about me and are delighted to see me back in my old routine.

I am very gracious, I swear, but at times it is difficult to squash down my real self, the cynical and bitingly-sarcastic self who threatens to rise up when people call me a walking miracle. That’s the phrase that keeps popping up: walking miracle. I have a really hard time with this, I have to admit. I didn’t do anything miraculous. If my car had slid off the road into the woods and I’d manage to survive, hanging from my seat belt for two weeks until rescuers found me, that would be a mirace. All I did was not die. I didn’t even have to work at it personally. The doctors just stuck me on every kind of life support imaginable and my body was strong enough to heal rather than succumb. It’s a very good thing, but not a very miraculous thing.

I aso don’t think I am particularly strong or tough. I did work hard at getting better once I was conscious but really, who wouldn’t? And it wasn’t like I had a choice. The fact that I am now walking around when one and half months ago I I woke up without the use of my legs is great. It is amazing even, the way the human body can heal. But it isn’t a miracle. No one ever said I couldn’t or wouldn’t walk. It was always inevitable. The only issue was how long it would take.

I don’t say any of this to the people who come up to me with eyes shining in amazement at seeing me, but it is becoming more of an effort to keep up my gracious and sunny response to all this, more of an act. But keep it up I will, as I have an image to maintain: walking miracle.

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She lives!

Fortunately, Maya’s ability to heal with unbelievable speed seems to be trumping the need to torment me with her misery. That, and those Tylenol 2s. I feed her half every 4 hours like clock-work and except for whining about all the food she wishes she could eat, Maya is doing really well.

Moments after I posted my last blog entry and told Maya it was time to leave, she said to me, “I just want you to know that if this hurts at all or goes wrong in any way, I’m blaming you completely.” She was serious.

I said, “Maya, I am completely aware that anything that goes on in your life at any point and involving anything will be blamed on me.” I was serious.

Right after the surgery treatment, I got to see her in the recovery room, and she was amusingly dopey. I asked if she wanted water. She stared at me blankly for a good five seconds before responding, “No.” A few minutes later, she asked, “Why are we here?” I told her, “You dental surgery – remember?” Five second pause. “Yes.” She then reached up and touched her frozen upper lip and asked, “Is this my lip?” When I told her it was, she said, “Are you sure?” like it was actually possible to confuse with something else.

It actually brought back memories of feeling like that when coming out of sedation, where the thought would formulate in my head but take forever to actually get out my mouth. (I’ve been sedated a few times – wisdom teeth, molar extraction, appendix, boob tumour. It sucks.)

(I also felt like that when I was sick after Boo was born, lying in the ER room, feverish and haemoraging. That was a bit different, though, because I think that was something more like shock. And in that case, I didn’t answer. I just lay there, thinking stuff but finding it just too much of an effort to bother to communicate with anyone. I even felt badly that it might be freaking them out, but not badly enough to fight my way out of it. Only when I realized Boo was hungry and I had to tell J how to latch her on did I get the strength to shake it off and communicate.)

Maya seemed to come out of it really quickly, which is something I never managed. I was marveling at how well she was doing as we headed out to the parking lot when I noticed that she was heading off the curb as we walked down the sidewalk. I just grabbed her coat and redirected her.

Then we ordered Evan Almighty on our ‘on demand’ cable and ate ice cream. Compared to my pre-Weight Watchers days, I didn’t eat much, but I still think I ate too much. And the movie was stupid. It would have been completely unbearable without Steve Carroll. But Maya was happy with both the movie and the ice cream, so the afternoon was a success.

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