I usually like to take a little time on New Year's Eve to reflect on the year that was and to get motivated about the year that will be. I generally do this at New Year's because I haven't taken the time out during the rest of the year to really pause and reflect - and let's face it, New Year's is a convenient time to do so. However, given the circumstances of the past year (some of which have been described here, others to be left for another day), 2006 was all about reflection and insight. This is not to suggest that I've now got it completely figured out - that would be remarkably arrogant of me (see, insight!) - but I've learned a few things along the rough, rocky road that was 2006:
1. Love the ones you've got while you've still got them: a particularly hard lesson this year, due to the sudden and tragic loss of my brother-in-law in a drunk driving accident last April. Trav, not a day goes by when I don't think about you - we miss you and wish you were still with us.
2. Health above wealth: self-explanatory, I think.
3. Protect the public health care system: although there were a few bumps along the way, the overall level of health care that I received while in the hospital was excellent. I was fortunate to have great nurses, fantastic doctors and the best surgeons around. And I didn't have to worry about whether I had enough private insurance or whether I would have to mortgage my house to cover my treatment. There's something to be said about supporting a public health system that is able to provide a high level of care regardless of a patient's income level.
4. Turning 30 isn't so bad: I'm just happy to be here - although I can't imagine what 40 will feel like...
5. You don't have to be everything to everyone all of the time: otherwise known as letting go of your deeply rooted inner desire to be Superwoman. You probably don't hear much about Superwoman anymore because the stress of having to please everyone likely killed her.
And perhaps the most important lesson of all:
Be thankful for what you have and never take anything for granted
Happy New Year!
Sunday, December 31, 2006
Saturday, December 16, 2006
A Couple of Rough Days
Just when you think everything is going so well...
I attempted to venture out of the house for the first time on Thursday. It had been exactly one week since I was discharged from the hospital and two weeks from the surgery. I thought I would head out with my mother to do a bit of Christmas shopping, but after about 15 minutes in the store, I started to swoon. And not because I saw some wildly attractive Christmas ornaments. My mom and I left the store and went immediately home, where I ended up spending the rest of the day lying on the couch, nursing a nagging headache.
The next day was worse. I have a bit of a history of migraine headaches and yesterday's headache was one of the worst ever. There were a bunch of other symptoms too (nausea, extreme chills, back pain, etc.) and I started to feel worried that maybe something had gone wrong with the surgery or maybe I had an infection of some sort. My husband called the Home Care nurse, who told us that it was probably nothing to worry about, but that maybe we should go to a Medicentre to have a doctor check it out just to be safe. So off we go to the Medicentre - my husband, my mother-in-law and me, with the wind whipping outside and the streets slippery from ice rain.
Luckily, the doctor was able to rule out any problems stemming from the surgery and ruled that the primary diagnosis was just a migraine. I walk out with some delightful anti-nauseaunts, anti-inflammatories and pain killers. My mother, meanwhile, who is not very good in a crisis, had tracked us down at the Medicentre and my husband managed to calm her down. She still drove to our home in the freezing rain to reassure herself that everything was in fact fine, and that I wasn't lying to her again (back story: when I got really sick with the colitis in January, my mother could sense that something was wrong but everytime she asked me, I told her that I was fine and there was nothing to worry about. So imagine her surprise when in early February, my husband told her that I had been admitted to the hospital. Moral of the story: never lie to your mother, because when she discovers the truth, she will never let you forget it.)
So I spent most of today in a bit of a drug-induced haze - it is possible that I might have overdone it a bit last night. It looks like I will still be stuck in the house for the foreseeable future. As the doctor said last night, I have to remember that I had major surgery and some days will be better than others; the main thing is to take it easy. A difficult thing to do, given that the holiday season is almost upon us. But luckily, most people seem to understand - unfortunately, not everyone, but that's a different story.
I attempted to venture out of the house for the first time on Thursday. It had been exactly one week since I was discharged from the hospital and two weeks from the surgery. I thought I would head out with my mother to do a bit of Christmas shopping, but after about 15 minutes in the store, I started to swoon. And not because I saw some wildly attractive Christmas ornaments. My mom and I left the store and went immediately home, where I ended up spending the rest of the day lying on the couch, nursing a nagging headache.
The next day was worse. I have a bit of a history of migraine headaches and yesterday's headache was one of the worst ever. There were a bunch of other symptoms too (nausea, extreme chills, back pain, etc.) and I started to feel worried that maybe something had gone wrong with the surgery or maybe I had an infection of some sort. My husband called the Home Care nurse, who told us that it was probably nothing to worry about, but that maybe we should go to a Medicentre to have a doctor check it out just to be safe. So off we go to the Medicentre - my husband, my mother-in-law and me, with the wind whipping outside and the streets slippery from ice rain.
Luckily, the doctor was able to rule out any problems stemming from the surgery and ruled that the primary diagnosis was just a migraine. I walk out with some delightful anti-nauseaunts, anti-inflammatories and pain killers. My mother, meanwhile, who is not very good in a crisis, had tracked us down at the Medicentre and my husband managed to calm her down. She still drove to our home in the freezing rain to reassure herself that everything was in fact fine, and that I wasn't lying to her again (back story: when I got really sick with the colitis in January, my mother could sense that something was wrong but everytime she asked me, I told her that I was fine and there was nothing to worry about. So imagine her surprise when in early February, my husband told her that I had been admitted to the hospital. Moral of the story: never lie to your mother, because when she discovers the truth, she will never let you forget it.)
So I spent most of today in a bit of a drug-induced haze - it is possible that I might have overdone it a bit last night. It looks like I will still be stuck in the house for the foreseeable future. As the doctor said last night, I have to remember that I had major surgery and some days will be better than others; the main thing is to take it easy. A difficult thing to do, given that the holiday season is almost upon us. But luckily, most people seem to understand - unfortunately, not everyone, but that's a different story.
Monday, December 11, 2006
Out, Not Yet About
I'm out of the hospital! Very good news indeed.
My surgery was on Nov. 29 and it seems that everything went very well (knock wood). The surgery, which I was told would take about 6 to 7 hours, instead took only 3 1/2. The surgeons said that it was "textbook" and that it could not have gone any more smoothly. Instead of a two week hospital stay, I was out in 8 days. Again, very good news. The overall experience this time was far different from the last time (in Feb-March of this year) and was, in general, much more positive.
So I am home now and deep into the healing process. Although I have been out for a few days, I am still frustratingly low on energy and uncomfortable in my abdominal area (hooray for painkillers!). I haven't actually ventured outside of the house yet, so I'm starting to get a little stir crazy. But I know that it was pretty major surgery and that I need to take it easy for the next few weeks in order to heal properly and to get ready for my next, and hopefully last, surgery in two or three months' time.
My general mood right now: extremely grateful. I am doing much better now than I was doing a few short months ago. Keep knocking that wood.
My surgery was on Nov. 29 and it seems that everything went very well (knock wood). The surgery, which I was told would take about 6 to 7 hours, instead took only 3 1/2. The surgeons said that it was "textbook" and that it could not have gone any more smoothly. Instead of a two week hospital stay, I was out in 8 days. Again, very good news. The overall experience this time was far different from the last time (in Feb-March of this year) and was, in general, much more positive.
So I am home now and deep into the healing process. Although I have been out for a few days, I am still frustratingly low on energy and uncomfortable in my abdominal area (hooray for painkillers!). I haven't actually ventured outside of the house yet, so I'm starting to get a little stir crazy. But I know that it was pretty major surgery and that I need to take it easy for the next few weeks in order to heal properly and to get ready for my next, and hopefully last, surgery in two or three months' time.
My general mood right now: extremely grateful. I am doing much better now than I was doing a few short months ago. Keep knocking that wood.
Monday, November 27, 2006
A Very Long Introduction...
Warning: LONG. So. Very. Long.
I was first diagnosed with ulcerative colitis in grade 12 – it was a pretty minor thing at the time and all I had to do was take some medication for a few months and I was fine. In fact, I was so fine that many years passed – maybe about 8 – before I had another attack. It seemed to start up again after I finished law school and started articling about 4 years ago – clearly, an extremely stressful time in my life. Even though I started having attacks here and there, it was always more of an inconvenience that could be treated with some pills, no problem. I had no idea that it could get as serious as it eventually did.
In November 2004, I had a major flare-up – again, triggered by stress with work (we were coming up to year end and I was trying to meet my targets for the year), stress with family, and stress with wedding planning (my now-husband and I got engaged in July 2004) – I was already worried about getting things together Christmas and coordinating the holidays with my family and my future in-laws, and it just got to be too much. So that was the first time I went on prednisone (for those of you who don't know, prednisone is a corticosteriod used to treat moderate to severe colitis attacks, however prolonged use can lead to serious side effects). It worked really well, though.
I always found it funny that doctors always said that what you eat isn’t a problem in colitis – it didn’t seem to make much sense to me that what you put into your body wouldn’t affect your colon. I had started to see a homeopath, who made some diet recommendations for me that at the time I thought were rather drastic and strict. But between the steroids and the diet changes, I seemed to get a lot better. So much better, in fact, that I stopped taking the drugs altogether a few months before my wedding.
We got married in September last year. The wedding was fantastic – the food was unreal and I ate everything on my plate, even though it was against the diet. In fact, I was feeling so good that I scrapped the diet a few weeks earlier. We went to Portugal on our honeymoon and the food was awesome. It felt so good to eat so well after I had been restricting myself for months.
So we returned from the honeymoon and headed back to the office. My job can often be a bit hectic, but it got crazy busy after we came back. And I don’t know exactly when it started, but I got sick again, probably sometime in December 2005. Same yearly stresses as before, but amplified. The family demands were also unprecedented – we were completely booked with family functions and events from 10:00 am on Dec 24 to 10:00 pm on Dec 26 – and then I had to go right back to work. So I got sicker and sicker, without really realizing it.
In January, I started the medication again and went back on the homeopathic diet. My attacks were rapidly becoming worse and worse. I was exhausted because I couldn’t sleep through the night – I would get up so many times with sudden painful cramps forcing me to go to the bathroom. At work, I would have to leave my office almost every hour to go to the washroom – and I was working on a major file at the time, which made matters worse. I couldn’t really eat anything – every time I tried to eat something, I would immediately get sharp pains in my abdomen trigerring yet another attack and I would have to immediately excuse myself from meetings in order to reach the washrooms in time.
I got really depressed. My husband would come home and I would cry in his arms almost every night. I didn’t want to leave the house unless I absolutely had to – so only for work. I remember one time Paul and I were going grocery shopping – I had gone to the bathroom at the house before we left, and the store was only 5 minutes away – by the time we got there, I had to run to find another bathroom. I couldn’t sit through a movie. I didn’t feel comfortable seeing friends or going to anyone’s house. I was sitting on pins and needles, waiting for the next sudden attack.
I felt like I was losing it. I had never had an attack this bad ever before. I went to see my doctor the first Monday in February. He was really concerned – he said that I needed to take a week off from work and if I didn’t show any marked improvement by the following Monday, I would need to go into the hospital for treatment. I was terrified – I had never been in the hospital for anything before. I thought to myself, there is no way I am going in – I was going to take that week off and I was going to get better.
Well, instead of getting better that week, it seemed to get even worse. I was going to the bathroom about 15-20 times a day. I could only drink Ensures for nourishment. Friday morning rolled around and I was in such tremendous pain – and I hadn’t slept the entire night. I asked Paul if he could take the day off of work so that he could take me to the hospital. Terrified or not, I didn’t feel that there was any other choice.
So we called up the doctor on Friday morning to let him make the arrangements with the hospital, and off we went. I am admitted, my doctor comes to see me, and I am put on the standard treatment of intra-venous high-dose steroids. Plus, I was highly dehydrated so I was going to get pumped full of saline solution. Don’t worry, said the doctor, most people respond to this treatment and you should be out of the hospital in 7 to 10 days.
So, 7 to 10 days ended up dragging to 6 ½ weeks in the hospital. Apparently, the standard treatment of the IV steroids didn’t work for me. So they tried to give me another round. For a few days it looked promising, and then I crashed again. I got really weak. I lost over 30 pounds of my body weight – I think the lowest I got down to was about 102 lbs. I kept passing out, which I had never ever done before. I needed 3 blood transfusions. I was forcing food down my throat and drinking 4-5 ensures a day, but I kept getting worse. And yet, I didn’t think I was that bad. I thought that if I was just patient, I could ride it out and I would be out of here in no time.
The doctors started talking to me about surgery about week 4. I refused to believe that I needed it. Give it time, I thought, it will get better. And around that time, it still seemed possible. But at the disease rapidly increased its assault on my colon, my treatment options were quickly becoming fewer and fewer. As one of my doctors told me, if I did nothing, I would die. Or I could have my colon removed and live. Come on, I thought, it can’t really be that serious. This is just colitis, right?
I remember the moment I truly realized that the surgery was the only realistic option left. It was a Wednesday, about 5 weeks in, my doctor came to see me and told me that I would need another – that would have been my third – blood transfusion. I was crushed, because I had been trying so hard to get better and I realized that all my efforts were in vain. I was so upset and so terrified – I was completely gripped with fear. I wasn’t scared that I would die during the operation or anything – I was afraid of more pain, I was afraid of the unknown, and I afraid of having to deal with the changes in my body.
My surgeon came in on his day off to do my procedure on Sunday, March 12. It took about 5 or 6 hours (so I'm told) and I spent a few more hours in the recovery room afterwards, before being wheeled back to my own room in the surgical unit. I don't remember much those first few hours after surgery - I do recall being a bit delirious and clicking like crazy on my self-administered morphine drip. Come to think of it, the morphine was the best part of the whole experience.
Apparently, it was a good thing that I didn’t wait any longer to get the surgery done – the surgeon told my husband that my colon was so weak, so eaten away, that he could have poked his finger right through it. And still, I didn’t think that I was that sick.
After the surgery, everything seemed to happen so fast. I had so many tubes sticking out of every part of me, which were removed day by day. By this time, I had grown completely dependent on the hospital. I was terrified when they took away my morphine. I was scared when they wanted me to get up and walk around. I was afraid of eating solid food again. I was really afraid of going home – it felt like I had been in the hospital so long that I couldn’t even remember what home was like. And what if something went wrong when I was at home? Who would help me? Would I get to the doctor in time? What would happen to me?
But eight days after surgery, I was ready to go home. Really, really ready. It must be sign that things are improving when you no longer want needles stuck into you twice a day. When the hospital "food" just doesn't cut it anymore and you're dreaming of garlic toast. When you want your own home and your own bed and your pyjamas. Yes.
Alas, I'm due to go back in on Wednesday, Nov 29 for more surgery. It is expected that I will stay in the hospital this time for 10 days to two weeks post-op. I am not looking forward to going, but it is a necessary evil. So, I thought I would start this blog to relate some of my experiences during the last few months and, let's face it, to kill sometime between morphine shots and hospital dinners.
I was first diagnosed with ulcerative colitis in grade 12 – it was a pretty minor thing at the time and all I had to do was take some medication for a few months and I was fine. In fact, I was so fine that many years passed – maybe about 8 – before I had another attack. It seemed to start up again after I finished law school and started articling about 4 years ago – clearly, an extremely stressful time in my life. Even though I started having attacks here and there, it was always more of an inconvenience that could be treated with some pills, no problem. I had no idea that it could get as serious as it eventually did.
In November 2004, I had a major flare-up – again, triggered by stress with work (we were coming up to year end and I was trying to meet my targets for the year), stress with family, and stress with wedding planning (my now-husband and I got engaged in July 2004) – I was already worried about getting things together Christmas and coordinating the holidays with my family and my future in-laws, and it just got to be too much. So that was the first time I went on prednisone (for those of you who don't know, prednisone is a corticosteriod used to treat moderate to severe colitis attacks, however prolonged use can lead to serious side effects). It worked really well, though.
I always found it funny that doctors always said that what you eat isn’t a problem in colitis – it didn’t seem to make much sense to me that what you put into your body wouldn’t affect your colon. I had started to see a homeopath, who made some diet recommendations for me that at the time I thought were rather drastic and strict. But between the steroids and the diet changes, I seemed to get a lot better. So much better, in fact, that I stopped taking the drugs altogether a few months before my wedding.
We got married in September last year. The wedding was fantastic – the food was unreal and I ate everything on my plate, even though it was against the diet. In fact, I was feeling so good that I scrapped the diet a few weeks earlier. We went to Portugal on our honeymoon and the food was awesome. It felt so good to eat so well after I had been restricting myself for months.
So we returned from the honeymoon and headed back to the office. My job can often be a bit hectic, but it got crazy busy after we came back. And I don’t know exactly when it started, but I got sick again, probably sometime in December 2005. Same yearly stresses as before, but amplified. The family demands were also unprecedented – we were completely booked with family functions and events from 10:00 am on Dec 24 to 10:00 pm on Dec 26 – and then I had to go right back to work. So I got sicker and sicker, without really realizing it.
In January, I started the medication again and went back on the homeopathic diet. My attacks were rapidly becoming worse and worse. I was exhausted because I couldn’t sleep through the night – I would get up so many times with sudden painful cramps forcing me to go to the bathroom. At work, I would have to leave my office almost every hour to go to the washroom – and I was working on a major file at the time, which made matters worse. I couldn’t really eat anything – every time I tried to eat something, I would immediately get sharp pains in my abdomen trigerring yet another attack and I would have to immediately excuse myself from meetings in order to reach the washrooms in time.
I got really depressed. My husband would come home and I would cry in his arms almost every night. I didn’t want to leave the house unless I absolutely had to – so only for work. I remember one time Paul and I were going grocery shopping – I had gone to the bathroom at the house before we left, and the store was only 5 minutes away – by the time we got there, I had to run to find another bathroom. I couldn’t sit through a movie. I didn’t feel comfortable seeing friends or going to anyone’s house. I was sitting on pins and needles, waiting for the next sudden attack.
I felt like I was losing it. I had never had an attack this bad ever before. I went to see my doctor the first Monday in February. He was really concerned – he said that I needed to take a week off from work and if I didn’t show any marked improvement by the following Monday, I would need to go into the hospital for treatment. I was terrified – I had never been in the hospital for anything before. I thought to myself, there is no way I am going in – I was going to take that week off and I was going to get better.
Well, instead of getting better that week, it seemed to get even worse. I was going to the bathroom about 15-20 times a day. I could only drink Ensures for nourishment. Friday morning rolled around and I was in such tremendous pain – and I hadn’t slept the entire night. I asked Paul if he could take the day off of work so that he could take me to the hospital. Terrified or not, I didn’t feel that there was any other choice.
So we called up the doctor on Friday morning to let him make the arrangements with the hospital, and off we went. I am admitted, my doctor comes to see me, and I am put on the standard treatment of intra-venous high-dose steroids. Plus, I was highly dehydrated so I was going to get pumped full of saline solution. Don’t worry, said the doctor, most people respond to this treatment and you should be out of the hospital in 7 to 10 days.
So, 7 to 10 days ended up dragging to 6 ½ weeks in the hospital. Apparently, the standard treatment of the IV steroids didn’t work for me. So they tried to give me another round. For a few days it looked promising, and then I crashed again. I got really weak. I lost over 30 pounds of my body weight – I think the lowest I got down to was about 102 lbs. I kept passing out, which I had never ever done before. I needed 3 blood transfusions. I was forcing food down my throat and drinking 4-5 ensures a day, but I kept getting worse. And yet, I didn’t think I was that bad. I thought that if I was just patient, I could ride it out and I would be out of here in no time.
The doctors started talking to me about surgery about week 4. I refused to believe that I needed it. Give it time, I thought, it will get better. And around that time, it still seemed possible. But at the disease rapidly increased its assault on my colon, my treatment options were quickly becoming fewer and fewer. As one of my doctors told me, if I did nothing, I would die. Or I could have my colon removed and live. Come on, I thought, it can’t really be that serious. This is just colitis, right?
I remember the moment I truly realized that the surgery was the only realistic option left. It was a Wednesday, about 5 weeks in, my doctor came to see me and told me that I would need another – that would have been my third – blood transfusion. I was crushed, because I had been trying so hard to get better and I realized that all my efforts were in vain. I was so upset and so terrified – I was completely gripped with fear. I wasn’t scared that I would die during the operation or anything – I was afraid of more pain, I was afraid of the unknown, and I afraid of having to deal with the changes in my body.
My surgeon came in on his day off to do my procedure on Sunday, March 12. It took about 5 or 6 hours (so I'm told) and I spent a few more hours in the recovery room afterwards, before being wheeled back to my own room in the surgical unit. I don't remember much those first few hours after surgery - I do recall being a bit delirious and clicking like crazy on my self-administered morphine drip. Come to think of it, the morphine was the best part of the whole experience.
Apparently, it was a good thing that I didn’t wait any longer to get the surgery done – the surgeon told my husband that my colon was so weak, so eaten away, that he could have poked his finger right through it. And still, I didn’t think that I was that sick.
After the surgery, everything seemed to happen so fast. I had so many tubes sticking out of every part of me, which were removed day by day. By this time, I had grown completely dependent on the hospital. I was terrified when they took away my morphine. I was scared when they wanted me to get up and walk around. I was afraid of eating solid food again. I was really afraid of going home – it felt like I had been in the hospital so long that I couldn’t even remember what home was like. And what if something went wrong when I was at home? Who would help me? Would I get to the doctor in time? What would happen to me?
But eight days after surgery, I was ready to go home. Really, really ready. It must be sign that things are improving when you no longer want needles stuck into you twice a day. When the hospital "food" just doesn't cut it anymore and you're dreaming of garlic toast. When you want your own home and your own bed and your pyjamas. Yes.
Alas, I'm due to go back in on Wednesday, Nov 29 for more surgery. It is expected that I will stay in the hospital this time for 10 days to two weeks post-op. I am not looking forward to going, but it is a necessary evil. So, I thought I would start this blog to relate some of my experiences during the last few months and, let's face it, to kill sometime between morphine shots and hospital dinners.
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