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Posts Tagged ‘illness’

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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I just got a comment on an old post, in which I had some photos of my soapstone carvings. It caused me to go look at the post once again and I saw that pluckymama had recommended, in the comments, a TV series to follow up on my Six Feet Under binge. I told her I would check it out, but instead got well enough to stop watching endling DVDs on my laptop and never did.

So then I ended up in the hospital. When I was first getting better, I found television overwhelming. I did not have the hand strength to hold a book or magazine and, worried that I would get bored as I managed to stay awake longer (initially, when I wasn’t being medically fussed with or in therapy, I slept), they’d drag in a TV for me. The first time, I watched part of an entertainment program but found it too hard to concentrate after a few minutes and had them turn it off. The second time, they put on Raiders of the Lost Ark, one of my very favourite movies. I think I made it half an hour that time. Even knowing the plot, watching required too much concentration.

But gradually, my concentration improved. At the same time, so did my hand strength and just about the time I was capable of holding open a People magazine, I had the brain power to read it.

J started bringing in DVDs to watch. I requested a season of Will and Grace a friend owns. He showed up with a series I’d never heard of that his receptionist had borrowed from someone else to give to me, as she swore I’d love it. Hand over the Will and Grace, I insisted.

When I was almost finished that, my former rabbi and current friend popped in for a visit and spotted the DVDs on my table. “Oh,” he said, “Firefly! I loved that series.” Well, if the rabbi says it’s good …

So I watched it, one DVD after another, really only stopping long enough to be polite to visitors, and be dragged off to physiotherapy, until I’d finished the whole thing. Then I went back and watched all the episodes with commentary. I love Firefly. My only regret in getting sucked into this thing is that stupid FOX cancelled it after only 11 episodes.

Basically, this is just a big, long apology to pluckymama for not listening to her earlier.

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It is spectacular gardening weather, as it was yesterday and the day before, and I am lying up in bed with the laptop propped on my lap and the dog using my legs for his pillow. I am too tired to garden. The other day, I gamely set to pulling some weeds that have already raised their ugly heads and I managed 3 before I ran out of steam. It’s a wee bit frustrating, but I just remind myself that it is less than 2 months since I woke up and they told me I’d need 3 months of rehab after I got out of the ICU, and then I’m just happy to be lying in my own room enjoying the nice breeze and yelling at my kids out the open window and stop worrying about the weeds, too much.

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I did worry about my dumb dog, though, who refuses to leave my side even if it means not really getting enough exercise. I took him for his check-up and shots and mentioned his lethargy to the vet. She firmly established herself in my good books by telling me that Jasper is clearly a very intelligent dog, as doodles tend to be, and he’s probably just a little freaked by my disappearance and reappearance and he’s going to stick close until he feels assured enough that I’m not going to disappear again. At least he made it easy to get him completely dematted and brushed out. He’s once again my fluffy puppy.

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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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More coma yammering

Now along with the sore throat, I have an achy chest and cough. Blech.

In hospital, I was completely paranoid about getting ill. I didn’t want anything to slow down my escape. If someone emailed and said something like, “I’m pretty much over my cold now and thought I’d pop by for a visit,” I’d bluntly reply that I’d love to see them, once they were completely over that cold. It worked, but now I’m thinking I held off those viruses by sheer force of will and once I got home and let my guard down, they pounced.

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I’ve had a lot of people ask me what it is like to wake up from a coma and if I remember anything from that time. The answer is pretty boring, I’m afraid. I remember nothing. I had a few weird, menacing dreams, which doesn’t much account for 18 days of being out of it. The reason for this is that they gave me some drug that caused me to forget – the same one they give you when they yank a tooth.

A small part of me is a bit irritated by that, since I too am curious about what was going on in my head during that time. Did I hear my friends and family telling me to love me and to hang on? A bigger part is relieved, because there were several times when I did rouse myself and all I did was try to rip the tubes attached to me out, deeply aggitated. They had to sedate me. Near the time I woke up for good, I did have a few smaller wakings and attempted to communicate with J, before giving up in apparent frustration and falling back asleep. So it doesn’t sound as if the whole experience was too pleasant, and I’m happy to be relieved of the burden of any such memories.

Th effects lingered, though, and much of my first couple of days awake is also gone, although I do remember bits and pieces. One thing I don’t really remember but is damn funny is that at one point a nurse came into the room and said something about end my condition. J responded. I then got angry at him and told him not to answer for me and he doesn’t know more about my illness that I do. Of course, he did. At that point he hadn’t even told me I’d been in a coma. He just walked over and pointed to the bank of blinking machines behind me and said, “I just need to press one of these buttons and I’ll send you right back where you came from.”

It is weird that other people know more about me than I do. Nurses were always coming into my room so emotional to see me sitting up and talking and I had no idea who they were. Once, after about two weeks, when I thought I knew all about what had happened to me, a nurse came in and started gushing about how happy she was that my eyelashes hadn’t fallen out, because that was some wicked eye infection I’d had. Huh? It is very disconcerting to hear something like that from a total stranger. J later comfirmed that in the first week my eyes had gotten infected and crusty. He’s never mentioned it because he forgot it, admid all the more significant things that had happened.

And just a couple of days ago, when I was showing J my now healed and no longer bandaged incision scar, I pointed to another scar about the size of a dime, round and deep, about an inch from the incision and said, “I have no idea where this thing came from.” He said, “Oh that. It was from a tube they put in to drain an abcess under your incision. There’s one on the other side too.” So I looked closely and sure enough, lower down between my scar and colostomy, there is another round scar I’d missed before.

So I’d have to say that my experience of being in a coma is one of having my intimate knowledge of my own body taken away from me. It is now a map of trauma – with many other scars from other tubes – that I had to learn about from others.

And since they lived through it and I slept through it, it is really more their experience than mine. In fact, I’d say another experience of being in a coma is waking up to find one’s friends and family all kind of shell-shocked. Visitor after visitor would walk in an just marvel that I was talking to them. I’ve had friends burst into tears just hearing my voice on the phone. That’s all just completely weird to me.

So I’d have to say that while recovering from being in a coma sucks, it’s less traumatic to be the one in the coma than the ones watching a loved one in the coma. And I’d highly recommend avoiding both experiences.

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I have a cold. My throat is really sore and goopy and I am wiped and achy. The sore throat started Monday evening. I only arrived home Friday evening. I swear, the moment I saw my chidren they must have infected me.

Both Maya and Asher were home Monday for supposed illness, but they got awfully perky and annoying and I regretted letting them stay home. The next day, Maya was fine and Asher was much worse. He stayed home again and acted as a sick child should, lying around like a blob and sleeping a lot. The two of us crawled into my bed an snoozed away a good part of the day. Now he’s back to his old self and I still feel like crap.

Part of the crappy feeling might be that I am officially painkiller-free. I’d like to say I am drug-free, but they have me on a great pile of other things, so I can’t. Anyway, I kept forgetting to take the painkiller on time the last few days and didn’t notice much of a difference, so my last dose wore off at around 1 am and I haven’t taken any since. It might not sound like a lot of time to you, but to me it is huge. I haven’t gone this long without taking those stupid narcotics since the doctor put me on them, several years ago.

My goal in getting off the heavy stuff was to avoid withdrawal as much as possible. I have experienced it several times (when I would forget to take my pills on time for some reason and a couple times in the hospital when they messed up my dosing) and it sucks in a very big way. I had a big argument in the hospital with J over this, as he wanted me to go cold turkey and get it over with. I kept saying, “I’m not going through withdrawal. I’m weaning slowly,” like a broken record, or possibly a stubborn child. The pharmacist came up to talk about it and said both our arguments had merit and I told her, “But I’m the patient and he isn’t and I’m not going through withdrawal.” I already have enough shit to deal with.

I think he secretly thought I would drag my feet at the end, that the closer I got, the slower I’d go. He underestimated my will to be free of this stuff.

So I am happy to report no withdrawal symptoms so far, just crappy FMS ones. I love spring (who doesn’t?) but it is hell on my body. I think I’ll take a nice little nap.  

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This post is easy as I am writing it from home. I am not home permanently. I am allowed out for a few hours at a time. I got to be home for Friday night dinner, which was great. The only difficult part is going back.

I realized that there has been no clear explanation of what happened to me. Well, let’s just say narcotics are bad, bad things. I was taking narcotic painkillers for the fibromyalgia. I figured out several months ago that the stupid things don’t work and it was time to wean myself off them. It’s not a quick process, but I had made significant process. What I didn’t know was that my colon was becoming impacted. (I don’t want to go into too much detail, given the nature of the topic, but turns out you can get a great big clog while still pooping, sometimes even regularly.)

So, I ended up with a little hole in my colon. This is bad. The evening it happened, I developed a really, really bad pain in my abdomen. I have regular bouts of excruciating pain caused by my irritable bowel which I deal with by getting a really hot bath until it passes. Thinking this was what I was facing, I got in the bath. The pain kept getting worse and worse. I’ve had two kids without any medications and that pain doesn’t hold a candle to how this felt. I finally asked J to phone 911.

The ambulance people were awful, but maybe I’ll complain more about that later. At least I got to the hospital. I was in the ER for about 12 hours while they figured out what was up and sent me to surgery. They missed the hole at first and by the time I went into surgery, they were facing fixing a 12 cm tear. Needless to say, those 12 hours were among the worst of my entire life. The pain was extreme and (correctly) they wouldn’t let me have anything to drink. I believe at the end I was literally begging them to just make the pain go away.

The surgeon came and explained I had a hole in my colon and needed surgery. He also told me that he didn’t know if he could pull me through in front of my mother. Ah, that famous surgeon lack of bedside manners. I was in so much pain I literally didn’t care. I was just waiting for unconsciousness. But my poor mother just got to deal with the extra fear that added during my surgery.

It didn’t go well. Actually, that depends on your perspective, since afterward, the surgeon apparently told my family he was surprised I survived it. So in that regards it went well: I lived. But I went into septic shock and my organs began to fail. I ended up in the ICU on every kind of life support imaginable.

I was in a coma for the next 18 days. It was touch and go for a while. It is bizarre for me to contemplate because by the time I knew about it, I was on the mend. All my friends and family were clearly traumatized by the experience and even though I was at the center of it, I emerged emotionally unscathed. The body is pretty scathed though (how come that is never used at the opposite of ‘unscathed’?). But I’m trucking right along in physio and can even walk, very slowly, up the stairs. My tentative release date is April 9th, months earlier than initially estimated.

I’m a lucky woman.

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but at least Maya is feeling better.

I haven’t written must about J’s celiac disease, mostly because it doesn’t much affect our lives. He had it when I met him and has had it since he was a baby. Of course, little was known about the disease back then and his parents were erroneously told he’d outgrown it when he was 6 years, but he was re-diagnosed when he was 19. This means he’s lived with it for over 20 years and we’d pretty much adjusted a lot time ago. He has been having fun with all the new gluten-free products that have come out in the past several years. When he was a kid, it was rice, rice and more rice.

Which doesn’t mean it hasn’t affected our lives at all. For one, whenever we go to New York, he drags me to all the gluten-free restaurants (which are actually getting pretty good). For another, we avoided giving our children anything with gluten until they were a year old. Celiac disease, the latest theory goes, involves a genetic component, but also requires some sort of trigger, or challenge to the immune system, to cause someone to develop the disease. In J’s case, it was the early introduction of gluten when he was an infant. For other people, it doesn’t happen until adulthood, and often people have no idea why it begins.

We have a great family doctor who is very aware of the issues and any time one of my kids comes in with some sort of stomach complaint or hard-to-figure-out illness, she sends them off for a blood test. The test measures the level of a certain antibody produced by the gut when it is reacting to gluten negatively – to put it simplistically.

So when I took Asher in to see our doctor a couple of weeks ago because he’s always tired and run down, is pale and has big dark circles under his eyes and loosing weight, her first move was to send him for the test. This time, it came back positive.

It still isn’t conclusive. The next step is a stomach biopsy to confirm it, but first we have to get to a specialist. And until he gets that biopsy, we have to keep feeding him gluten or the test won’t be accurate. This, of course, is driving me nuts. I look at his pale face as I hand him a piece of pizza and cringe a little inside, feeling like I’m poisoning him.

If he is celiac, it is probably one of the least awful chronic illnesses we could have to deal with, since we already know the ropes and as long as he follows the diet, he’ll live a normal life. So that is good. But I can’t help but think of him being unable to eat anything at birthday parties, having to watch everyone else eating pizza during pizza day at school, and going through his adolescence having to avoid all the fast food his friends will be eating (at least he’ll be a lot healthier). It isn’t the worst thing, but it still sucks.

And there’s my selfish distress too. Before we had kids, I used to experiment with baking for J. I perfected a GF banana bread and have several great cookie recipes. I was even experimenting with bread. But then the kids arrived and the stores began to stock GF products and I stopped making the effort (poor neglected J). But if Asher is positively diagnosed, I’m going to have to come up with more variety. I’ve already promised to work on challah and matzah balls. It’s going to be a lot of extra work for me, not wanting my boy to feel deprived. (My husband, sure. But my boy? Never.)

Asher took the news very calmly, for the most part, telling me that he’d always expected this to happen at some point. Weird kid.

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