First off, I have a confession to make... I've been cheating on this blog. There's another blog in my life. I realised after much consideration and thought that I'd like to blog about more than just lupus. Which is the main reason I haven't posted on here is almost a month.
There have been lupus developments. As you know, after I complained to my rheumy about this persistent rash, he increased my Plaquenil dosage to 400 mg 7 days a week (from 5 days a week). Plaquenil's effects aren't noticeable immediately. It does take anywhere from a month or more to see anything change. So, initially, the rash stayed. But slowly, after about a month, the rash started subsiding. Within 6 weeks it was gone. I was meant to go in for a follow-up appointment on Aug 18, but I didn't go for my blood test on time and the doctor wanted blood work results when he saw me.
With the rash gone, and with renewed energy, I thought I was over the hump. Then something interesting started happening. I'm not quite sure when it started (another reason I really should blog more often), but I started feeling achy when I got out of bed. Kind of like the achy feeling you get when you have the flu. Sort of a whole body ache and not a localized pain. I let it go for a while, thinking it was the AC that was causing my joints to stiffen but the ache hasn't gone away.
I finally ended up getting my blood test on Sep 8 and have an appointment with my rheumy on Sep 27. I'll be sure to bring this up with him. I've never had joint pain before so I have no idea what it's supposed to feel like. I always thought it would be a sharp pain, not a dull ache... but I really don't know. Also, while I'm no longer as fatigued as I was a month ago, I can feel my stress levels rising. A lot of it has to do with juggling Camran's school requirements with the baby and establishing a routine for both of them. I'm hoping the pressure and stress ease within a couple weeks.
I'll keep you posted on this new development.
On another note, I finally went to see my family doctor. I needed a new prescription for Keppra and I took the opportunity to discuss the need to continue with this medication. I haven't had a seizure or any related seizure activity in over 2 years. While the medication isn't hindering my lifestyle in any way, it does have an impact on my budget. The medication costs me $20 a month and that's WITH my insurance paying for 80% of it. I wouldn't be sorry to see it go. On the other hand, I don't want to risk another seizure and risk having my driver's license revoked again. I don't think I could bear another year of that. Since Dr. Licorish is getting increasingly difficult to get a hold of, my family doctor has referred me to another neurologist. Still waiting for a call from his/her office for an appointment. I'll keep you posted on this one too.
Saturday, September 17, 2011
Friday, August 19, 2011
There's more to life than Lupus
I was re-reading my last post and realised that it was a huge shift from my usual banter. I was about to delete the post and subsequent pages but then I stopped. Let's face it, my life isn't just about Lupus anymore. I have so many things that make up my life. Lupus, yes, but also other things such as parenting, money matters, spirituality, marriage, housekeeping, family relations, work and work-life balance. It's been a while since I've written only about lupus so you may have already sensed my deviation but now I'm making it official. I will not change the name of the blog because it all started with Lupus and that's one constant in my life that won't go away. I'm also keeping my Four Principals because I quite like them.
My last post centered around money. I like budgeting, saving up for something big, juggling life's little surprises with limited resources and seeing my cash flow stay in the positive through thick and thin. As you know, I paid off all my debt at the beginning of this year with the intention of NEVER going down that path again. We still use our credit cards but we make sure we pay them off in full every month, at the same time earning Air Miles (more about that in another post). So far, this has been fine but, let's face it, I'm on maternity leave and currently bring home 55% of what I normally would. We don't have any extra money for nice-to-haves. For example, our towel warmer (and drier in one) died. We had bought it when we moved into this house, three and a half years ago, so it was expected to die soon enough but a new towel warmer (which, let's face it, is a luxury item) costs $300. I don't have un-earmarked $300 lying around. So, we're going to make do with drying towels the good old fashioned way: on a hook beside the shower. *Gasp* not on a hook beside the shower!!! The towel warmer was wonderful especially during our long Canadian winters but it's a luxury item we can do without for a few months. Maybe in the near future we will purchase a new one but for now, while I'm on maternity leave, we will manage without it.
There are other things that we make do without but sometimes things work out for the better. I love chocolate cake!! Absolutely just love it. My sister and I used to get a large McCain's chocolate cake and finish it in one afternoon. Glorious days when neither of us had to worry about pesky things like weight gain or tummy aches or diarrhea. Until recently, when the mood struck, I would go to the 24-hour grocery store nearby and buy their clearance chocolate cakes for $12.99. Lovely double chocolate fudge cakes that tasted even yummier after nuking for 12 seconds. Alas, those days couldn't last forever. When you're income gets slashed, you cut out little luxuries. For me, it was the chocolate cakes. That didn't mean the cravings went away. I just got smarter about what I wanted. I discovered cake mix! So, now, I get a box of devil's food cake mix for $1.50 and whipped frosting ($4.60) if I'm feeling really dangerous and I get a full 2-layer 8-inch cake for $6 instead of $13. Most times, I just eat the chocolate cake as is, nuked for 7 seconds - yummy!!! Total cost $1.50 and total time 35 minutes.
There's a wonderful sense of accomplishment when you reduce spending and learn to be content with the decision. I love my cake mixes and even when I go back to work, I'll continue to bake, frost and decorate my own cakes. Today was the first day we used the "hook beside the shower". The towel was dry by lunch time and I folded it and put it in a neat pile beside the tub. It worked!
My last post centered around money. I like budgeting, saving up for something big, juggling life's little surprises with limited resources and seeing my cash flow stay in the positive through thick and thin. As you know, I paid off all my debt at the beginning of this year with the intention of NEVER going down that path again. We still use our credit cards but we make sure we pay them off in full every month, at the same time earning Air Miles (more about that in another post). So far, this has been fine but, let's face it, I'm on maternity leave and currently bring home 55% of what I normally would. We don't have any extra money for nice-to-haves. For example, our towel warmer (and drier in one) died. We had bought it when we moved into this house, three and a half years ago, so it was expected to die soon enough but a new towel warmer (which, let's face it, is a luxury item) costs $300. I don't have un-earmarked $300 lying around. So, we're going to make do with drying towels the good old fashioned way: on a hook beside the shower. *Gasp* not on a hook beside the shower!!! The towel warmer was wonderful especially during our long Canadian winters but it's a luxury item we can do without for a few months. Maybe in the near future we will purchase a new one but for now, while I'm on maternity leave, we will manage without it.
There are other things that we make do without but sometimes things work out for the better. I love chocolate cake!! Absolutely just love it. My sister and I used to get a large McCain's chocolate cake and finish it in one afternoon. Glorious days when neither of us had to worry about pesky things like weight gain or tummy aches or diarrhea. Until recently, when the mood struck, I would go to the 24-hour grocery store nearby and buy their clearance chocolate cakes for $12.99. Lovely double chocolate fudge cakes that tasted even yummier after nuking for 12 seconds. Alas, those days couldn't last forever. When you're income gets slashed, you cut out little luxuries. For me, it was the chocolate cakes. That didn't mean the cravings went away. I just got smarter about what I wanted. I discovered cake mix! So, now, I get a box of devil's food cake mix for $1.50 and whipped frosting ($4.60) if I'm feeling really dangerous and I get a full 2-layer 8-inch cake for $6 instead of $13. Most times, I just eat the chocolate cake as is, nuked for 7 seconds - yummy!!! Total cost $1.50 and total time 35 minutes.
There's a wonderful sense of accomplishment when you reduce spending and learn to be content with the decision. I love my cake mixes and even when I go back to work, I'll continue to bake, frost and decorate my own cakes. Today was the first day we used the "hook beside the shower". The towel was dry by lunch time and I folded it and put it in a neat pile beside the tub. It worked!
Thursday, July 21, 2011
Let's talk about lupus
I had mentioned in an earlier post that pre-lupus rash returned on my face, neck and upper chest area around early May. Since then, the rash hasn't actually gone away completely. I started taking Prednisone for a while and it did lessen considerably during that time but promptly returned after I tapered the steroids.
Finally, I thought it would be best to speak to my rhumatologist about this. I called him on Tuesday this week and asked if he could check my bloodwork from June 27th for any abnormalities. His office called back and said that there wasn't anything glaring but the doctor wanted to see me anyway. So, I went over to the office yesterday and we went through my bloodwork, line by line. Turns out that my double stranded DNA numbers were elevated by 100 points compared to December 2010. All other counts (hemoglobin, white blood cell, iron) were all better than December's numbers. Judging from the rash and my reduced energy levels, my doctor recommended that I increase my Plaquenil dose from 5 days a week to 7 days a week. He suggested I try that until August 18th and, if that doesn't help or if my condition worsens, then to start 10mg of Prednisone.
That suited me just fine but it wasn't easy. I've spoken about being authoritative before but I've never had to act upon it the way I had to yesterday. I had to keep going back to the fact that the rash has been there since May and has not gone down. I had to describe my lack of energy in the mornings and absolute "need" to go down for a nap in the afternoons. I had to ask him to go through the blood test results line by line. In other words, I had to take charge of my own condition. I'm not saying anything against my doctor. I totally understand that he's erring on the side of caution when it comes to dispensing steroids which are very harsh drugs with serious side effects. Still, I had to practically force him to do something. We've sat back and waited in the past and it has led to serious flares. This time, I cannot take that chance. Not with an infant who's totally dependent on me.
Personally, I don't think the increased Plaquenil dose will make a difference. Still, we'll see what happens. I'll keep you posted.
Finally, I thought it would be best to speak to my rhumatologist about this. I called him on Tuesday this week and asked if he could check my bloodwork from June 27th for any abnormalities. His office called back and said that there wasn't anything glaring but the doctor wanted to see me anyway. So, I went over to the office yesterday and we went through my bloodwork, line by line. Turns out that my double stranded DNA numbers were elevated by 100 points compared to December 2010. All other counts (hemoglobin, white blood cell, iron) were all better than December's numbers. Judging from the rash and my reduced energy levels, my doctor recommended that I increase my Plaquenil dose from 5 days a week to 7 days a week. He suggested I try that until August 18th and, if that doesn't help or if my condition worsens, then to start 10mg of Prednisone.
That suited me just fine but it wasn't easy. I've spoken about being authoritative before but I've never had to act upon it the way I had to yesterday. I had to keep going back to the fact that the rash has been there since May and has not gone down. I had to describe my lack of energy in the mornings and absolute "need" to go down for a nap in the afternoons. I had to ask him to go through the blood test results line by line. In other words, I had to take charge of my own condition. I'm not saying anything against my doctor. I totally understand that he's erring on the side of caution when it comes to dispensing steroids which are very harsh drugs with serious side effects. Still, I had to practically force him to do something. We've sat back and waited in the past and it has led to serious flares. This time, I cannot take that chance. Not with an infant who's totally dependent on me.
Personally, I don't think the increased Plaquenil dose will make a difference. Still, we'll see what happens. I'll keep you posted.
Friday, July 15, 2011
The Definition of Contentment
Being a planner by nature, I'm always planning for the next thing. Most times this results in me not actually enjoying what I have in front of me, in the present. I can't say there has been one single time when everything has gone according to plan. Still I continue to plan.
After much evaluation, I think the reason I plan so much is because I have this inherent drive to succeed. Try as I do, I cannot sit back and just let life happen. I feel having some plan is better than just winging it. I'm sure the true "live in the moment" sort of people will disagree with me because planning for the future takes away from living in the day. And for those who believe in destiny and fate, well, we all know that everything comes from God and gets taken away by Him. So then it doesn't really matter how much you plan, you do (or do not) get only that which is in your destiny.
Having acknowledged that, I am trying to learn to live in the day, whether or not things go according to my plan. My first opportunity came yesterday.
Back in February, I registered (and paid upfront) Camran for swimming lessons to keep him busy over the summer break. Half hour swimming lessons everyday for 8 weeks, for a total of 80 lessons. I planned it in such a way that he would start at Level 1 and pass each level and so by the end of the summer would have completed Level 4 (a proficient enough swimmer). I didn't take the time to actually read the curriculum... I just assumed that by going everyday, he would definitely pass each level. Also, the fact that he's been taking preschool lessons since he was 3.
Then destiny, fate or God took over, reminding me, once again, that my plans were worth nothing.
Camran didn't pass Level 1.
This threw a solid wrench in my plans for him being a super swimmer by the end of the summer. Camran, of course, was undeterred that he had to repeat the level. For him, passing the course was less important than the opportunity to actually swim everyday. That, my friends, is the essence of life. The difference between a pure 6 year-old mind and that of a control freak Aries adult.
I had to take a step back. Sure, he wouldn't be swimming laps by September, but he was having a blast each day. Instead of looking at 6 weeks into the future, I needed to look at what was happening today. Instead of dwelling on the things that he didn't achieve, I needed to see the things that he did achieve.
My contentment comes from watching Camran jump around in the pool, dunk his head under, splash around with his new friends. I always thought that if you were content, you would stop striving for better. Now I see that contentment is not about remaining stagnant... rather it's about appreciating all experiences - good and bad. It's about being positive and looking at the glass half full. It's about looking at mistakes as opportunities for improvement. Contentment doesn't mean being happy all the time. Contentment does mean being satisfied. Being able to live under any circumstances.
I'm going to enjoy the journey because the summer of 2011 will never happen again. That is about the only thing that I can be truly sure of.
At the end of the day, I didn't have to worry about Camran repeating Level 1 because his instructor passed him. He will be starting Level 2 on Monday. But the quasi-failing grade was a real eye-opener for me.
After much evaluation, I think the reason I plan so much is because I have this inherent drive to succeed. Try as I do, I cannot sit back and just let life happen. I feel having some plan is better than just winging it. I'm sure the true "live in the moment" sort of people will disagree with me because planning for the future takes away from living in the day. And for those who believe in destiny and fate, well, we all know that everything comes from God and gets taken away by Him. So then it doesn't really matter how much you plan, you do (or do not) get only that which is in your destiny.
Having acknowledged that, I am trying to learn to live in the day, whether or not things go according to my plan. My first opportunity came yesterday.
Back in February, I registered (and paid upfront) Camran for swimming lessons to keep him busy over the summer break. Half hour swimming lessons everyday for 8 weeks, for a total of 80 lessons. I planned it in such a way that he would start at Level 1 and pass each level and so by the end of the summer would have completed Level 4 (a proficient enough swimmer). I didn't take the time to actually read the curriculum... I just assumed that by going everyday, he would definitely pass each level. Also, the fact that he's been taking preschool lessons since he was 3.
Then destiny, fate or God took over, reminding me, once again, that my plans were worth nothing.
Camran didn't pass Level 1.
This threw a solid wrench in my plans for him being a super swimmer by the end of the summer. Camran, of course, was undeterred that he had to repeat the level. For him, passing the course was less important than the opportunity to actually swim everyday. That, my friends, is the essence of life. The difference between a pure 6 year-old mind and that of a control freak Aries adult.
I had to take a step back. Sure, he wouldn't be swimming laps by September, but he was having a blast each day. Instead of looking at 6 weeks into the future, I needed to look at what was happening today. Instead of dwelling on the things that he didn't achieve, I needed to see the things that he did achieve.
My contentment comes from watching Camran jump around in the pool, dunk his head under, splash around with his new friends. I always thought that if you were content, you would stop striving for better. Now I see that contentment is not about remaining stagnant... rather it's about appreciating all experiences - good and bad. It's about being positive and looking at the glass half full. It's about looking at mistakes as opportunities for improvement. Contentment doesn't mean being happy all the time. Contentment does mean being satisfied. Being able to live under any circumstances.
I'm going to enjoy the journey because the summer of 2011 will never happen again. That is about the only thing that I can be truly sure of.
At the end of the day, I didn't have to worry about Camran repeating Level 1 because his instructor passed him. He will be starting Level 2 on Monday. But the quasi-failing grade was a real eye-opener for me.
Sunday, July 10, 2011
Why does timeshare have a bad rap?
This year marks our 10-year anniversary as owners of timeshare at Carriage Hills Resort. And what a positive decade!
It was early 2001 when I got a call from a telemarketer saying that we were selected to receive a free night's stay at Horseshoe Resort close to Barrie, Ontario. At the time, Aamir and I weren't making tons of money and our "vacations" were week-long stays at local motels. Going to a "fancy" resort in cottage country sounded very appealing, even if it was only for one night. The only caveat was that we had to attend a 2-hour information seminar in order to receive the coupon. What the heck, I thought. 2 hours for two full days and a night at a resort seemed like it was worth a shot.
Aamir and I went up north to Horseshoe Resort one Sunday morning (much too early) to attend the seminar at their presentation centre. Five hours, and some serious sales pressure later, we signed on the dotted line and the salesperson popped open a bottle of champagne. We had just purchased a 2-bedroom condo at Carriage Hills Resort, a Gold Crown RCI affiliate resort. We could use the unit for one week a year, at any time, depending on availability. If we didn't want to return to Carriage Hills, we could deposit our unit to RCI and exchange to go anywhere in the world. The catch: an $18,000 mortgage and annual maintenance fees for the resort (which, at the time, were $500 per annum)! Were we happy with the purchase? Absolutely! Could we afford it? Absolutely not!
Legally we had 10 days to cancel the transaction without any obligation. Everything looked great on paper but the cost was astronomical. How were we going to afford the additional monthly mortgage payment? After seven days of deliberation, we decided to call our sales rep and inform him that we wanted to cancel. Of course, the guy wanted to hear none of it. He met us at a coffee shop close to our house (we didn't have to travel all the way to horseshoe valley that time) and heard us out. He counter-offered to reduce the mortgage to $11,000 and offer us an "every-other-year" option whereby we would get the 2-bedroom unit every even year and could spread it out over a two year period. He was so darn convincing, we accepted his offer. After all, he just saved us $9,000!
So, that year, we split our week into a 3-night stay and a 4-night stay at Carriage Hills Resort and absolutely loved our time there. The place was serene, relaxing, we had our own kitchen, access to a barbecue, indoor/outdoor pool - it was the best vacation we'd had since our bank-breaking honeymoon. Needless to say we returned from both trips completely convinced that we had made a good decision. In 2002, we exchanged our bonus week for a 2 bedroom condo at Pompano Beach in Florida. This place was GORGEOUS!! And we were 100% sold on our decision.
Since then, we have been on numerous vacations courtesy of our timeshare at Carriage Hills Resort and RCI:
We plan on taking many more vacations with our timeshare and, contrary to what others think about this "scam", I still firmly believe that it was one of our more valuable purchases. While the maintenance fees have now gone up to $925 every other year (eep!), it's still a fraction of the cost of hotels for 7 nights. We have a large variety of places to choose from and the only thing determining where we go is cost of flights and our own schedules.
I'll write more about traveling on a budget very soon.
It was early 2001 when I got a call from a telemarketer saying that we were selected to receive a free night's stay at Horseshoe Resort close to Barrie, Ontario. At the time, Aamir and I weren't making tons of money and our "vacations" were week-long stays at local motels. Going to a "fancy" resort in cottage country sounded very appealing, even if it was only for one night. The only caveat was that we had to attend a 2-hour information seminar in order to receive the coupon. What the heck, I thought. 2 hours for two full days and a night at a resort seemed like it was worth a shot.
Aamir and I went up north to Horseshoe Resort one Sunday morning (much too early) to attend the seminar at their presentation centre. Five hours, and some serious sales pressure later, we signed on the dotted line and the salesperson popped open a bottle of champagne. We had just purchased a 2-bedroom condo at Carriage Hills Resort, a Gold Crown RCI affiliate resort. We could use the unit for one week a year, at any time, depending on availability. If we didn't want to return to Carriage Hills, we could deposit our unit to RCI and exchange to go anywhere in the world. The catch: an $18,000 mortgage and annual maintenance fees for the resort (which, at the time, were $500 per annum)! Were we happy with the purchase? Absolutely! Could we afford it? Absolutely not!
Legally we had 10 days to cancel the transaction without any obligation. Everything looked great on paper but the cost was astronomical. How were we going to afford the additional monthly mortgage payment? After seven days of deliberation, we decided to call our sales rep and inform him that we wanted to cancel. Of course, the guy wanted to hear none of it. He met us at a coffee shop close to our house (we didn't have to travel all the way to horseshoe valley that time) and heard us out. He counter-offered to reduce the mortgage to $11,000 and offer us an "every-other-year" option whereby we would get the 2-bedroom unit every even year and could spread it out over a two year period. He was so darn convincing, we accepted his offer. After all, he just saved us $9,000!
So, that year, we split our week into a 3-night stay and a 4-night stay at Carriage Hills Resort and absolutely loved our time there. The place was serene, relaxing, we had our own kitchen, access to a barbecue, indoor/outdoor pool - it was the best vacation we'd had since our bank-breaking honeymoon. Needless to say we returned from both trips completely convinced that we had made a good decision. In 2002, we exchanged our bonus week for a 2 bedroom condo at Pompano Beach in Florida. This place was GORGEOUS!! And we were 100% sold on our decision.
Since then, we have been on numerous vacations courtesy of our timeshare at Carriage Hills Resort and RCI:
- 2002 - Pompano Beach, Florida - we visited Orlando (Disney World) and Miami (South Beach)
- 2004 - Weston, Florida - Aamir, my MIL, my SIL and her husband went to Florida for a family wedding and stayed at a resort exchanged through RCI
- 2005 - Carriage Hills - Camran's first vacation at 5 months
- 2007 - Carriage Hills
- 2008 - Carriage Hills
- 2009 - Carriage Hills
- 2010 - Malaysia - my MIL and FIL went to the mountains of Malaysia
- 2010 - New Hampshire - we toured all of New England (New Hampshire, Vermont, Maine, Connecticut, Boston
- 2011 - Quebec - toured Quebec City and Mt. Tremblant - also Rayan's first vacation at 2 months
We plan on taking many more vacations with our timeshare and, contrary to what others think about this "scam", I still firmly believe that it was one of our more valuable purchases. While the maintenance fees have now gone up to $925 every other year (eep!), it's still a fraction of the cost of hotels for 7 nights. We have a large variety of places to choose from and the only thing determining where we go is cost of flights and our own schedules.
I'll write more about traveling on a budget very soon.
Friday, July 8, 2011
When discipline turns into family time
I am a firm believer in the notion that experiences are better investments than material objects. If I had $1000, I would rather spend it on a vacation than a new TV. Aamir and I differ vastly on this. He would buy the TV (or laptop, or gaming console or some other depreciating asset). This would be the exact reason why I prefer to engage Camran in various after-school activities while he buys him video games and toys, creating a sure recipe for conflict of time, and resulting in too many fights and timeouts for the little guy.
I finally had enough yesterday. Little Camran decided that he preferred to continue playing his PSP (and mouthing off to me to boot) instead of taking 20 minutes to eat lunch. After 20 minutes of timeouts which accomplished nothing, I finally informed him that he had lost his "electronic" privileges (PS3, PSP, TV, movies and computer time) for 6 days. Pretty steep for a kid who spends 3-4 hours a day in front of some screen or another. He grudgingly agreed (after I threatened to double it to 12 days if he didn't) to finally calm down and eat his lunch.
Today was his first full day of non-screen time. He did the following without prompting (where normally the entire day would be a struggle): Woke up happily at 7am, brushed his teeth, made his bed, ate his entire breakfast in record time, made a peek-a-boo craft toy for Rayan, changed for swimming lessons, packed his towel and clothes, had an amazing class, ate his entire lunch, did 4 pages of English, 2 pages of Math, did a 3-D puzzle, ate his entire dinner, got ready for baseball, played a good game, changed into pajamas and slept promptly at 8:30pm. The entire day went by without a single fight!
To be honest, when Camran plays his video games or watches TV, he's entertained and I get some much-valued "me" time. But of course, that's such a parenting cop out. I'll admit, I wasn't too thrilled about having to spend all day with him in his full misery. It's funny how you can learn things about yourself when situations present themselves. Camran learned to spend a whole day without electronics and without being sullen and argumentative - he daren't lest I extend his punishment (but really who cares why).
And I learned that, sometimes, drastic measures can result in positive outcomes!
I finally had enough yesterday. Little Camran decided that he preferred to continue playing his PSP (and mouthing off to me to boot) instead of taking 20 minutes to eat lunch. After 20 minutes of timeouts which accomplished nothing, I finally informed him that he had lost his "electronic" privileges (PS3, PSP, TV, movies and computer time) for 6 days. Pretty steep for a kid who spends 3-4 hours a day in front of some screen or another. He grudgingly agreed (after I threatened to double it to 12 days if he didn't) to finally calm down and eat his lunch.
Today was his first full day of non-screen time. He did the following without prompting (where normally the entire day would be a struggle): Woke up happily at 7am, brushed his teeth, made his bed, ate his entire breakfast in record time, made a peek-a-boo craft toy for Rayan, changed for swimming lessons, packed his towel and clothes, had an amazing class, ate his entire lunch, did 4 pages of English, 2 pages of Math, did a 3-D puzzle, ate his entire dinner, got ready for baseball, played a good game, changed into pajamas and slept promptly at 8:30pm. The entire day went by without a single fight!
To be honest, when Camran plays his video games or watches TV, he's entertained and I get some much-valued "me" time. But of course, that's such a parenting cop out. I'll admit, I wasn't too thrilled about having to spend all day with him in his full misery. It's funny how you can learn things about yourself when situations present themselves. Camran learned to spend a whole day without electronics and without being sullen and argumentative - he daren't lest I extend his punishment (but really who cares why).
And I learned that, sometimes, drastic measures can result in positive outcomes!
Sunday, July 3, 2011
Family first
After my last post, I sort of suspected my first blog post would be about family but I never thought I would have so much to report. This past weekend was a long weekend for us. It was Canada Day on Friday, July 1 so Aamir and everyone else were off from work on Friday. The sisters-in-law and their respective families came over that day, we had barbecue, played Carrom (google it!), laughed, and had a great time all over. I baked chocolate chip muffins and they were absolutely divine!! I'm a sucker for chocolate anyway but these muffins were apparently really good because 24 muffins disappeared within hours of making them.
On Saturday, I allowed Camran to take a break from his usual egg breakfast and made some pancakes. We added blueberries and chocolate chips to the batter and made them into flower shapes (from a mould). Once again, these chocolate blueberry pancakes were amazing. I must have had at least half a dozen pancakes on my own! Camran had another 3 or 4.
Inspired by the success of the muffins and the pancakes, I looked up some layer-cake recipes. I found an interesting clown cake recipe on All Recipes and thought it would be a neat idea for Rayan's 1st birthday cake. Of course, I should preface this by saying that I hate cooking and any form of food creation beyond boiling pasta/rice and the most basic stir fries is loathsome. Baking a cake, even from cake mix, is SO not my thing. Still, I have vowed to try and do more family stuff and that, unfortunately, includes cooking for them.
So, this morning, on Rayan's 3-month birthday, we turned a trip to Walmart into family time. The cake took about 5 hours to prepare with all the cooling and frosting. I didn't find gel food colouring so I used the regular liquid stuff. As a result the colours weren't as vibrant as the original recipe. Still, at the end of the day it turned out really well. The most important thing is that Aamir and Camran were both sufficiently impressed by my amateur baking skills and I had a ton of fun making it.
All in all, it was a successful weekend as far as family time went. After the success of these baking experiments, I definitely think there will be more cooking and baking in the books over the summer. It would appear that my family actually likes my creations.
On Saturday, I allowed Camran to take a break from his usual egg breakfast and made some pancakes. We added blueberries and chocolate chips to the batter and made them into flower shapes (from a mould). Once again, these chocolate blueberry pancakes were amazing. I must have had at least half a dozen pancakes on my own! Camran had another 3 or 4.
Inspired by the success of the muffins and the pancakes, I looked up some layer-cake recipes. I found an interesting clown cake recipe on All Recipes and thought it would be a neat idea for Rayan's 1st birthday cake. Of course, I should preface this by saying that I hate cooking and any form of food creation beyond boiling pasta/rice and the most basic stir fries is loathsome. Baking a cake, even from cake mix, is SO not my thing. Still, I have vowed to try and do more family stuff and that, unfortunately, includes cooking for them.
So, this morning, on Rayan's 3-month birthday, we turned a trip to Walmart into family time. The cake took about 5 hours to prepare with all the cooling and frosting. I didn't find gel food colouring so I used the regular liquid stuff. As a result the colours weren't as vibrant as the original recipe. Still, at the end of the day it turned out really well. The most important thing is that Aamir and Camran were both sufficiently impressed by my amateur baking skills and I had a ton of fun making it.
All in all, it was a successful weekend as far as family time went. After the success of these baking experiments, I definitely think there will be more cooking and baking in the books over the summer. It would appear that my family actually likes my creations.
Thursday, June 30, 2011
A new beginning...
I think it's time to move on.
I have spent the last 2 years of my life dealing. Most of the posts on this blog have been about coping with what life has thrown my way. I was always such a planner but the past 2 years have been a real eye-opener. I have dealt with events and circumstances that I would never have dreamed possible to deal with. Through writing, praying, bearing and patience. But it was hard. Writing this blog has helped me tremendously. I was able to put down my thoughts, fears, hopes and aspirations for the vague uncertainty that had become my life. I thank my followers (official and unofficial) who have stayed with me through this trying journey. Make no mistake, it was difficult. But allowing myself to admit defeat and then finding ways of overcoming and clawing my way back was such an enlightening experience, I wouldn't take it back for anything.
Having said that, it's high time I started looking ahead instead of what I left behind. In no particular order, and to be observed as soon as possible, here are the things that I'm implementing effective immediately.
1. Focus on spirituality. I feel better when I pray. I have a sense of peace and calmness. Prayers - as many times a day as possible. Without excuse.
2. Give to charity. Regularly. A smile, an encouraging word, an ear to one who needs to talk. Those are all things that I intend on giving freely from now on. You don't need a research study to know that when you're in a bad mood, a smile or a good laugh makes you feel better. I'm also talking about money. I like giving money (and stuff) away. It's the same feeling of calm and peace I get when I pray. After I return to work I will be setting aside $40 a month for the poor and needy. Until then, I will be dispensing smiles without reserve. :)
3. Make time for my family. Between Lupus, pregnancy, child birth and a new baby, I am ashamed to admit that I haven't been the most attentive wife. The simple things my husband and I used to do... having long chats before bed, watching movies on Friday nights... those things just don't happen anymore. I've been so caught up in what I need to do for myself that I haven't thought about our connection. Now that I've finally got some semblance of control with lupus, it's time to reconnect with my (now 2) kids and husband for quality family times.
4. Be content with what I have. Particularly, but not limited to, material possessions. It's true that if you aren't content with what you have, you will never be happy with what you get. It will never be enough. This has always been true for me. I have always wanted the next level up, the next $300 income, the "ideal" child and husband. I need to start looking at the wonderful things around me and thanking God for them. I have to remind myself to look at all that I do have that other "better" people possibly don't. Two lovely kids (yes, they are really lovely), a fantastic relationship with my husband, a wonderful extended family, a good job with good money (had to force myself to write that one but it's true), and the intelligence and will power to counter the ill-effects of a chronic illness.
Going forward, my posts will be centered around these 4 themes and I will report back on how I'm doing with them. I will use this blog as a means to keep me in check.
I have spent the last 2 years of my life dealing. Most of the posts on this blog have been about coping with what life has thrown my way. I was always such a planner but the past 2 years have been a real eye-opener. I have dealt with events and circumstances that I would never have dreamed possible to deal with. Through writing, praying, bearing and patience. But it was hard. Writing this blog has helped me tremendously. I was able to put down my thoughts, fears, hopes and aspirations for the vague uncertainty that had become my life. I thank my followers (official and unofficial) who have stayed with me through this trying journey. Make no mistake, it was difficult. But allowing myself to admit defeat and then finding ways of overcoming and clawing my way back was such an enlightening experience, I wouldn't take it back for anything.
Having said that, it's high time I started looking ahead instead of what I left behind. In no particular order, and to be observed as soon as possible, here are the things that I'm implementing effective immediately.
1. Focus on spirituality. I feel better when I pray. I have a sense of peace and calmness. Prayers - as many times a day as possible. Without excuse.
2. Give to charity. Regularly. A smile, an encouraging word, an ear to one who needs to talk. Those are all things that I intend on giving freely from now on. You don't need a research study to know that when you're in a bad mood, a smile or a good laugh makes you feel better. I'm also talking about money. I like giving money (and stuff) away. It's the same feeling of calm and peace I get when I pray. After I return to work I will be setting aside $40 a month for the poor and needy. Until then, I will be dispensing smiles without reserve. :)
3. Make time for my family. Between Lupus, pregnancy, child birth and a new baby, I am ashamed to admit that I haven't been the most attentive wife. The simple things my husband and I used to do... having long chats before bed, watching movies on Friday nights... those things just don't happen anymore. I've been so caught up in what I need to do for myself that I haven't thought about our connection. Now that I've finally got some semblance of control with lupus, it's time to reconnect with my (now 2) kids and husband for quality family times.
4. Be content with what I have. Particularly, but not limited to, material possessions. It's true that if you aren't content with what you have, you will never be happy with what you get. It will never be enough. This has always been true for me. I have always wanted the next level up, the next $300 income, the "ideal" child and husband. I need to start looking at the wonderful things around me and thanking God for them. I have to remind myself to look at all that I do have that other "better" people possibly don't. Two lovely kids (yes, they are really lovely), a fantastic relationship with my husband, a wonderful extended family, a good job with good money (had to force myself to write that one but it's true), and the intelligence and will power to counter the ill-effects of a chronic illness.
Going forward, my posts will be centered around these 4 themes and I will report back on how I'm doing with them. I will use this blog as a means to keep me in check.
Saturday, June 18, 2011
Prednisone again
One of the early signs of a flare is a facial rash. This is not the "typical" early sign but the last time I went through a major flare, the rash was present for almost a month. I never did anything about it at that time and it escalated into a fever and then a full-fledged flare.
Well, after my mother left Canada on April 29th, I noticed a small facial rash. It didn't go away with my usual creams. In fact, it got worse. I let it fester for a few more weeks but after a month, I realised that this was something more than just allergies. It was right around this time when the sleep deprivation was really starting to get to me. Rayan was going through his 6-week growth spurt and was waking up every 2 hours and feeding for 45 mins at a time. That, coupled with the added stress of not knowing if he was getting enough milk, and I was feeling pretty rundown.
Enter Prednisone.
Normally, I'm not a fan of Prednisone but I do know that it works instantly. I started taking it in the last week in May. Just 5 mg a day after breakfast. Within 2 days of taking it, the rash started to subside. Also, by this time, Rayan had started taking less time to feed and he fed less often. Could be considered coincidence but I'll give Prednisone the credit.
After a week of taking the meds, I thought it was time to stop. The little pills had served their purpose and I didn't want to overuse them. I stopped a few days before we went away for our Quebec vacation. Well, by the time we left for Quebec, the rash was back in full force! At the last minute, I packed 7 little Prednisone pills and took them with us. Once again, by the 2nd day, the rash started to clear up.
I've been on Prednisone for 2 weeks now and just ordered another refill. The rash hasn't disappeared completely but I am feeling a lot better. Even with only 6-7 hours of interrupted sleep a night, I don't have the overwhelming urge to just drop everything and go for a nap. Rayan has become a lot more predictable with his feedings and usually lasts a minimum of 2.5 hours between feedings. Generally, it's more like 3+ hours. He's also sleeping a 5 hour stretch at night so that's helping me loads.
The point of this story is... Prednisone works for me. I like it and taking a small dose like 5 mg a day doesn't sound effective but it's just enough for me to ward off an impending flare. I'm almost certain my bloodwork won't show flare activity and I'll have that tiny white pill to thank for that.
Well, after my mother left Canada on April 29th, I noticed a small facial rash. It didn't go away with my usual creams. In fact, it got worse. I let it fester for a few more weeks but after a month, I realised that this was something more than just allergies. It was right around this time when the sleep deprivation was really starting to get to me. Rayan was going through his 6-week growth spurt and was waking up every 2 hours and feeding for 45 mins at a time. That, coupled with the added stress of not knowing if he was getting enough milk, and I was feeling pretty rundown.
Enter Prednisone.
Normally, I'm not a fan of Prednisone but I do know that it works instantly. I started taking it in the last week in May. Just 5 mg a day after breakfast. Within 2 days of taking it, the rash started to subside. Also, by this time, Rayan had started taking less time to feed and he fed less often. Could be considered coincidence but I'll give Prednisone the credit.
After a week of taking the meds, I thought it was time to stop. The little pills had served their purpose and I didn't want to overuse them. I stopped a few days before we went away for our Quebec vacation. Well, by the time we left for Quebec, the rash was back in full force! At the last minute, I packed 7 little Prednisone pills and took them with us. Once again, by the 2nd day, the rash started to clear up.
I've been on Prednisone for 2 weeks now and just ordered another refill. The rash hasn't disappeared completely but I am feeling a lot better. Even with only 6-7 hours of interrupted sleep a night, I don't have the overwhelming urge to just drop everything and go for a nap. Rayan has become a lot more predictable with his feedings and usually lasts a minimum of 2.5 hours between feedings. Generally, it's more like 3+ hours. He's also sleeping a 5 hour stretch at night so that's helping me loads.
The point of this story is... Prednisone works for me. I like it and taking a small dose like 5 mg a day doesn't sound effective but it's just enough for me to ward off an impending flare. I'm almost certain my bloodwork won't show flare activity and I'll have that tiny white pill to thank for that.
Friday, May 20, 2011
The true test of keeping lupus at bay... a baby!
I really have been delinquent about updating my blog, haven't I? What can I say... I've had my hands sort of full lately.
So, I had my baby on April 3, 2011... a strapping lad we decided to call Rayan Armaan. He was born 7 lbs 3 oz, 21 inches in length in a drug-free birthing experience. In this day and age, giving birth without pain medication is unheard of. I mean, the facility is available to you. Why would anyone voluntarily choose pain over, well, no pain? For me, the answer is pretty simple. After living with a chronic illness, I've learned to appreciate what real pain is. I mean, if I can go through weeks of fatigue, fever and malaise for no reason other than another meaningless lupus flare, then I think I can endure a few hours of pain to actually have something tangible and gorgeous in my hands. Call me crazy!
And gorgeous he is... my miracle baby. He was born at 9:59 pm wailing happily. The most memorable thing about that night (besides the 15 mins of continuous screaming on my part), was when he immediately stopped crying the minute they put his naked body on my chest.
Now, here we are 6 weeks later and I'm still doing fine. Sort of. Truthfully speaking, having Rayan around has been a real test for me. I mean, I knew having 2 kids was going to be hard. But I think I was thinking about 2 children. Not one child and a baby. A baby who needs to nurse every 2 to 3 hours. Yes, that means around the clock. That means waking up in the middle of the night to feed him for 45 mins and crawling back into bed, only to wake up again after an hour. Camran had slept through the night by the time he was 2 weeks old. Not this one. He's a strong boy and needs his food. And, since I am adamantly breastfeeding, no one can really step in and care for him in the middle of the night.
So, at this point, aside from taking care of 2 kids, there are two main things I'm trying to keep up with. Sleeping and eating. We all know, from my experience of past, that those two things have been crucial in keeping those awful lupus flares at bay. Sleeping is still relatively easy. I nap when the baby naps when Camran is at school. Eating is a little harder but I have learned the art of wolfing down food in under 5 minutes. I eat a lot, but I make sure I don't take more than 5 minutes at any meal time.
The other major stressor for me is being "too busy". So, even though I still have to take Camran for his activities in the evening, I make sure that I'm in bed (maybe not asleep but definitely relaxing) by 8:30 pm every night. Rayan and I tuck Camran into bed and then we retire to my bedroom for the night. The baby doesn't always sleep but just holding him to calm him down is enough. I don't stress if he's wailing with tummy pains... it happens. He's generally pretty good about falling asleep as long as I hold him close to me as he drifts off.
And I have absolutely no problem doing that.
So, I had my baby on April 3, 2011... a strapping lad we decided to call Rayan Armaan. He was born 7 lbs 3 oz, 21 inches in length in a drug-free birthing experience. In this day and age, giving birth without pain medication is unheard of. I mean, the facility is available to you. Why would anyone voluntarily choose pain over, well, no pain? For me, the answer is pretty simple. After living with a chronic illness, I've learned to appreciate what real pain is. I mean, if I can go through weeks of fatigue, fever and malaise for no reason other than another meaningless lupus flare, then I think I can endure a few hours of pain to actually have something tangible and gorgeous in my hands. Call me crazy!
And gorgeous he is... my miracle baby. He was born at 9:59 pm wailing happily. The most memorable thing about that night (besides the 15 mins of continuous screaming on my part), was when he immediately stopped crying the minute they put his naked body on my chest.
Now, here we are 6 weeks later and I'm still doing fine. Sort of. Truthfully speaking, having Rayan around has been a real test for me. I mean, I knew having 2 kids was going to be hard. But I think I was thinking about 2 children. Not one child and a baby. A baby who needs to nurse every 2 to 3 hours. Yes, that means around the clock. That means waking up in the middle of the night to feed him for 45 mins and crawling back into bed, only to wake up again after an hour. Camran had slept through the night by the time he was 2 weeks old. Not this one. He's a strong boy and needs his food. And, since I am adamantly breastfeeding, no one can really step in and care for him in the middle of the night.
So, at this point, aside from taking care of 2 kids, there are two main things I'm trying to keep up with. Sleeping and eating. We all know, from my experience of past, that those two things have been crucial in keeping those awful lupus flares at bay. Sleeping is still relatively easy. I nap when the baby naps when Camran is at school. Eating is a little harder but I have learned the art of wolfing down food in under 5 minutes. I eat a lot, but I make sure I don't take more than 5 minutes at any meal time.
The other major stressor for me is being "too busy". So, even though I still have to take Camran for his activities in the evening, I make sure that I'm in bed (maybe not asleep but definitely relaxing) by 8:30 pm every night. Rayan and I tuck Camran into bed and then we retire to my bedroom for the night. The baby doesn't always sleep but just holding him to calm him down is enough. I don't stress if he's wailing with tummy pains... it happens. He's generally pretty good about falling asleep as long as I hold him close to me as he drifts off.
And I have absolutely no problem doing that.
Friday, December 10, 2010
Surprise!
I remember a post long ago where I said that decisions are made by us but the universe conspires to make things happen in a certain grand design. Well, it turns out that God had plans about my future, which I obviously didn't know about when I wrote my last big post.
I went back to work and everything seemed to be working out just fine. I'd learned to manage the stresses of work and the stresses of home and find the balance somewhere in between. Then, on August 2, I was thrown another curve ball. And I had NO idea how to react.
Shockingly, I found out I was pregnant! Almost 5 weeks along, based on my best guess calculation. That day was a holiday from work and we had just returned from vacation. I was so shocked, I think I spent that entire day in denial. The next day I called Dr. Laskin's office and they had me come in that afternoon for a blood test to confirm. They called me back within a couple hours and confirmed. Yes, I was indeed pregnant. And due on Apr 7, 2011.
Still, I refused to believe it. Even if it was true, I thought it would end the same way the others had - at the 8-week marker and without warning. I wasn't holding my breath. Dr. Laskin's office called me in for an ultrasound at 7 weeks and then again at 8 weeks. Miraculously , both ultrasounds were perfectly normal and the baby was growing well, it seemed.
I started wondering whether maybe this one was going to last but I didn't breathe easy until the 12-week ultrasound on September 25 and I heard the heartbeat. A strong 163 bpm heartbeat. On November 10, we found out that it's a boy. Yes, another one. And told Camran who is over the moon happy.
I am coming up to 6 months on Dec 16 and I've felt the baby move several times. I'm seeing Dr. Laskin every 4 weeks and Dr. Shilletto every 4 weeks. I get an ultrasound every 4 weeks and I'm part of this prenatal study that Dr. Laskin is working on. I haven't had any flare-like symptoms and the initial first trimester fatigue has disappeared too.
Over the upcoming x-mas holidays, we will be moving Camran's furniture into the guest bedroom and converting Camran's old room into a nursery for the baby. We've started thinking about names but haven't really agreed on anything. I know I won't rest easy about this pregnancy until I have the baby in my arms. There are too many possible complications and too many possible risks that I refuse to contemplate and I refuse to plan for.
I'm still terrified about having two kids. No one I speak to is in the same boat with a chronic illness and a full-time job. But more on curveballs and decisions in another post... I'll let you guys digest this one first.
I went back to work and everything seemed to be working out just fine. I'd learned to manage the stresses of work and the stresses of home and find the balance somewhere in between. Then, on August 2, I was thrown another curve ball. And I had NO idea how to react.
Shockingly, I found out I was pregnant! Almost 5 weeks along, based on my best guess calculation. That day was a holiday from work and we had just returned from vacation. I was so shocked, I think I spent that entire day in denial. The next day I called Dr. Laskin's office and they had me come in that afternoon for a blood test to confirm. They called me back within a couple hours and confirmed. Yes, I was indeed pregnant. And due on Apr 7, 2011.
Still, I refused to believe it. Even if it was true, I thought it would end the same way the others had - at the 8-week marker and without warning. I wasn't holding my breath. Dr. Laskin's office called me in for an ultrasound at 7 weeks and then again at 8 weeks. Miraculously , both ultrasounds were perfectly normal and the baby was growing well, it seemed.
I started wondering whether maybe this one was going to last but I didn't breathe easy until the 12-week ultrasound on September 25 and I heard the heartbeat. A strong 163 bpm heartbeat. On November 10, we found out that it's a boy. Yes, another one. And told Camran who is over the moon happy.
I am coming up to 6 months on Dec 16 and I've felt the baby move several times. I'm seeing Dr. Laskin every 4 weeks and Dr. Shilletto every 4 weeks. I get an ultrasound every 4 weeks and I'm part of this prenatal study that Dr. Laskin is working on. I haven't had any flare-like symptoms and the initial first trimester fatigue has disappeared too.
Over the upcoming x-mas holidays, we will be moving Camran's furniture into the guest bedroom and converting Camran's old room into a nursery for the baby. We've started thinking about names but haven't really agreed on anything. I know I won't rest easy about this pregnancy until I have the baby in my arms. There are too many possible complications and too many possible risks that I refuse to contemplate and I refuse to plan for.
I'm still terrified about having two kids. No one I speak to is in the same boat with a chronic illness and a full-time job. But more on curveballs and decisions in another post... I'll let you guys digest this one first.
Thursday, May 6, 2010
Great news!
I had a neurologist appointment on Tuesday this week and she said I could finally get my driver's license back! She said she would send the letter to the ministry on Tuesday so I'm expecting to hear back from them in two weeks.
Following-up on last week's posts, I'm feeling great again. I did rest up on the weekend and have managed to stay calm and relaxed at work and at home. I have slept enough this past week and I'm feeling quite well. Whatever that was a week ago, has now gone and I'm hoping that I've finally figured out how to deal with this illness without drowning.
Following-up on last week's posts, I'm feeling great again. I did rest up on the weekend and have managed to stay calm and relaxed at work and at home. I have slept enough this past week and I'm feeling quite well. Whatever that was a week ago, has now gone and I'm hoping that I've finally figured out how to deal with this illness without drowning.
Friday, April 30, 2010
Busy but fine
It was another very busy day today but I didn't feel sick. I slept early enough last night, as planned, and woke up fine. The pain in the back of my eyes is gone - for good, I hope. I tried to take it all in stride today and it was a productive day. I got tons done and managed to stay calm through it all. I'm glad it's the weekend, though. I hope to get more sleep the next couple of days and, hopefully, by Monday, I'll be brand new again.
Thursday, April 29, 2010
So far so good
I felt alright today. I didn't go to bed till 11:30 pm last night and woke up at 6 am today but I was fine all day and actually got a lot of work done. No fever and the ache in the back of my eyes was gone. No headache either. I left work at 4:30 pm today - usual time and came home and relaxed. I'm going to attempt to sleep before 10 pm tonight and, hopefully, by the weekend should be fine again.
Wednesday, April 28, 2010
Time for the ultimate test
Back in January 2009, I had to pull a few late nighters at work (like, serious late nights till 10 pm). Around that time, I started going through a flare. It was the stress of working late and working on time-consuming, minuscule spreadsheets. I went through a crazy flare that lasted about 10 days. The fever came about 2 days after the dull ache in the back of my eyes started. I ignored it, of course, and it blew into a full-fledged flare. I didn't have meds at the time but the late nights stopped and the fever went away on its own.
Today, I had to work late again. Not like the last time where I was at work till 10 pm but late enough. And I wasn't looking at spreadsheets today but I felt the familiar ache in the my back of my eyes. It's clear that I've stressed my body. Now, I need to figure this out. If I take it easy the next few days, will it go away on its own or will I need to call for reinforcements? Will this dull ache progress into a fever? Will I need to resort to the Prednisone? Let's see... I'll keep you posted.
Today, I had to work late again. Not like the last time where I was at work till 10 pm but late enough. And I wasn't looking at spreadsheets today but I felt the familiar ache in the my back of my eyes. It's clear that I've stressed my body. Now, I need to figure this out. If I take it easy the next few days, will it go away on its own or will I need to call for reinforcements? Will this dull ache progress into a fever? Will I need to resort to the Prednisone? Let's see... I'll keep you posted.
Thursday, April 22, 2010
7.5 months later
I remember that day so clearly. Tuesday, September 8, 2009. I remember twitching a little when I grabbed my cereal box from under the counter. I remember putting my cereal bowl into the microwave and the uncontrollable convulsions that overtook my body. I remember seeing the cute paramedic leaning down and asking me what my name was and what day it was. I didn't remember it at the time - I'd just come out of a grand mal seizure - but I remember it well now. I remember lying on the stretcher in emergency, wondering what was going on with my body. Why it was failing me like this.
It's been 7.5 months since that day. I thank god everyday for all that I have now. My health, my happiness, my peace of mind, my family. I have learned so much over the last 7.5 months. Perhaps most importantly, I've learned to stop feeling guilty. I don't feel guilty about sleeping more if I need to. I don't feel guilty about working late if I need to. I don't feel guilty about going out with my friends when I want to. I don't feel guilty about spending money on myself. I don't feel guilty - period. And that in itself has lifted this gigantic, invisible weight off my shoulders.
I have learned that I can't do it all. I'm not having another child. I'm not going to finish my undergraduate degree. I might not get a promotion anytime soon. But I'm at peace. I have learned to appreciate all that I have. I have learned to accept that my life is predestined, but I haven't stopped dreaming. I believe that in the face of what I went through, I have emerged a more confident person and, if there are more trials ahead of me, I know I will manage.
I've lost and I've regained and I've learned that losing isn't so bad after all - as long as you can see what you gained out of the loss.
It's been 7.5 months since that day. I thank god everyday for all that I have now. My health, my happiness, my peace of mind, my family. I have learned so much over the last 7.5 months. Perhaps most importantly, I've learned to stop feeling guilty. I don't feel guilty about sleeping more if I need to. I don't feel guilty about working late if I need to. I don't feel guilty about going out with my friends when I want to. I don't feel guilty about spending money on myself. I don't feel guilty - period. And that in itself has lifted this gigantic, invisible weight off my shoulders.
I have learned that I can't do it all. I'm not having another child. I'm not going to finish my undergraduate degree. I might not get a promotion anytime soon. But I'm at peace. I have learned to appreciate all that I have. I have learned to accept that my life is predestined, but I haven't stopped dreaming. I believe that in the face of what I went through, I have emerged a more confident person and, if there are more trials ahead of me, I know I will manage.
I've lost and I've regained and I've learned that losing isn't so bad after all - as long as you can see what you gained out of the loss.
Friday, April 2, 2010
Sleep problems
I struggle with sleep. Ever since I've been back at work, I'm having trouble getting into a routine. I know I need 9 hours of sleep at a minimum. If I wake up at 6 am, I need to be in bed by 9 pm. In theory anyway. Now, that's where the problem comes in.
See, I come home by 5:30 pm. I change out of my work clothes and get to work right away on eating dinner and preparing mine and Camran's lunch for the next day. I also clean up the kitchen, load the dishwasher and wash the non-dishwasher dishes. I usually finish around 7 pm at which point, Camran generally comes home from karate and I start his bedtime routine (which includes looking over his homework if he had school, go through his word lists, bath, brush teeth, settle into bed, read a book, stay with him while he says his surahs and duas and then 5 mins of quiet time). By that time it's generally 8:15 pm to 8:30 pm. Then I go for a shower, change into pajamas, tune into Jango, write a blog post, read the blogs I follow, catch up on facebook or other stuff I can't do at work which usually brings me to at least 9:30 pm. By that time, Aamir comes upstairs and watches TV.
Since I've started working, it now takes me up to 90 mins to fall asleep. I toss and turn and I just can't sleep. This is a foreign feeling for me. Before I got sick (or maybe it was because of the impending ill health), I used to be able to sleep as soon as my head hit the pillow. These days I don't sleep till 11 pm! That's too late. You'd think after all the stuff I have to do, I would just pass right out, right? But that doesn't happen. And it's not that I just don't need the sleep (like those wonderful Prednisone days). I do have trouble waking up the next morning and, even though I don't get sleepy during the day, I can feel myself depleted of energy by the time I have to repeat the evening routine the following day. The following night, I generally fall asleep within 30 mins but I don't think this is healthy.
So, at best, I'm getting 8 hours of sleep and, at worse, I get 7 hours of sleep. Not a big deal for a normal, non-lupite, I suppose. But given this condition, I really need to get more sleep. Ideally, I should be asleep by 9 pm, meaning I should be in bed by 8:30 pm. The worse part is that I'm not even including any of the extra stuff that I would like to do - like working out, spending time with Aamir, working on my novel, or spending time with friends.
I know this will pass and I just need to get into the groove but, it's hard while I figure all this out. Working full-time and caring for a child all while having a chronic illness is hard. It's times like this when I am very happy with my decision to stop trying for another child. Having a 2nd child to care for would be unthinkable in my condition - never mind being pregnant and trying to do all of the above.
See, I come home by 5:30 pm. I change out of my work clothes and get to work right away on eating dinner and preparing mine and Camran's lunch for the next day. I also clean up the kitchen, load the dishwasher and wash the non-dishwasher dishes. I usually finish around 7 pm at which point, Camran generally comes home from karate and I start his bedtime routine (which includes looking over his homework if he had school, go through his word lists, bath, brush teeth, settle into bed, read a book, stay with him while he says his surahs and duas and then 5 mins of quiet time). By that time it's generally 8:15 pm to 8:30 pm. Then I go for a shower, change into pajamas, tune into Jango, write a blog post, read the blogs I follow, catch up on facebook or other stuff I can't do at work which usually brings me to at least 9:30 pm. By that time, Aamir comes upstairs and watches TV.
Since I've started working, it now takes me up to 90 mins to fall asleep. I toss and turn and I just can't sleep. This is a foreign feeling for me. Before I got sick (or maybe it was because of the impending ill health), I used to be able to sleep as soon as my head hit the pillow. These days I don't sleep till 11 pm! That's too late. You'd think after all the stuff I have to do, I would just pass right out, right? But that doesn't happen. And it's not that I just don't need the sleep (like those wonderful Prednisone days). I do have trouble waking up the next morning and, even though I don't get sleepy during the day, I can feel myself depleted of energy by the time I have to repeat the evening routine the following day. The following night, I generally fall asleep within 30 mins but I don't think this is healthy.
So, at best, I'm getting 8 hours of sleep and, at worse, I get 7 hours of sleep. Not a big deal for a normal, non-lupite, I suppose. But given this condition, I really need to get more sleep. Ideally, I should be asleep by 9 pm, meaning I should be in bed by 8:30 pm. The worse part is that I'm not even including any of the extra stuff that I would like to do - like working out, spending time with Aamir, working on my novel, or spending time with friends.
I know this will pass and I just need to get into the groove but, it's hard while I figure all this out. Working full-time and caring for a child all while having a chronic illness is hard. It's times like this when I am very happy with my decision to stop trying for another child. Having a 2nd child to care for would be unthinkable in my condition - never mind being pregnant and trying to do all of the above.
Saturday, March 27, 2010
How much is too much?
I was reading a blog post "Giving up isn't giving in" from a blog I follow, Despite Lupus. Something in the post struck me. Sara Gorman talks about giving in and allowing yourself concessions because of the disease. She says that when you try to "fight" the disease and do everything the way you would when you were feeling 100%, that just makes the condition worse. Doing too much and pushing yourself beyond your own limit causes flares.
But, my question is, how do you know how much is too much? I understand now that trying for another baby is too much. Attempting to finish my degree is too much. Taking the cheaper and longer commute is too much. But I do not believe (and never did believe) that going back to work and working towards a promotion is too much. I do not believe that my goal of sending Camran to private school is too much.
I'll go back to an older post where I said that everything in this universe (and beyond) is part of a grand design - God's grand design. Events unfold in life and guide us along the way to make the choices we do. I was all set to try again for Baby #2 this cycle. Then I stumbled upon a message board on Babycenter.com called "Parents of Only Children" and within 48 hours I was convinced that I should just leave well enough alone and stop trying for another baby, realising that getting pregnant again would wreak havoc on my body all over again. My stumbling upon the message board and reading the posts led me to make my decision. It was my stumbling upon the board that was part of the grand design. The decision was mine (though I'm not trying to say that it wasn't all predestined - I was meant to make that decision all along - I just needed to have events take place before I could make the decision).
Last week, I found out that the VP of my department is pregnant. An event has unfolded that will, no doubt, have an effect on my future with the department. Her life has inexorably affected mine. Things like this reinforce my belief that everything that's meant to happen does happen one way or another. I'm back at work and I feel energetic when I'm there. This just shows me that my being at work is the right thing to do and is not too much for me, not in my books.
Not only am I really, really positive about my life at the moment, I'm really hopeful about the future too. This illness has brought me closer to understanding things about myself that I took for granted in the past. I know my limitations and I know what I need to focus on to stay healthy and at peace. If there was ever a time when I thought to myself "Why me?", I fully understand the answer to that question today.
But, my question is, how do you know how much is too much? I understand now that trying for another baby is too much. Attempting to finish my degree is too much. Taking the cheaper and longer commute is too much. But I do not believe (and never did believe) that going back to work and working towards a promotion is too much. I do not believe that my goal of sending Camran to private school is too much.
I'll go back to an older post where I said that everything in this universe (and beyond) is part of a grand design - God's grand design. Events unfold in life and guide us along the way to make the choices we do. I was all set to try again for Baby #2 this cycle. Then I stumbled upon a message board on Babycenter.com called "Parents of Only Children" and within 48 hours I was convinced that I should just leave well enough alone and stop trying for another baby, realising that getting pregnant again would wreak havoc on my body all over again. My stumbling upon the message board and reading the posts led me to make my decision. It was my stumbling upon the board that was part of the grand design. The decision was mine (though I'm not trying to say that it wasn't all predestined - I was meant to make that decision all along - I just needed to have events take place before I could make the decision).
Last week, I found out that the VP of my department is pregnant. An event has unfolded that will, no doubt, have an effect on my future with the department. Her life has inexorably affected mine. Things like this reinforce my belief that everything that's meant to happen does happen one way or another. I'm back at work and I feel energetic when I'm there. This just shows me that my being at work is the right thing to do and is not too much for me, not in my books.
Not only am I really, really positive about my life at the moment, I'm really hopeful about the future too. This illness has brought me closer to understanding things about myself that I took for granted in the past. I know my limitations and I know what I need to focus on to stay healthy and at peace. If there was ever a time when I thought to myself "Why me?", I fully understand the answer to that question today.
Wednesday, March 10, 2010
Perinatologist appointment
I had my appointment with the Perinatologist today. He was super nice! What a difference from my regular ob-gyn!! In a nutshell, he said that miscarriages, in general, just happen. Most times it's because of chromosomal abnormalities and have nothing to do with any real "problem". However, in light of the fact that I have been newly diagnosed with Lupus, the general consensus is that the disease must be under control before getting pregnant for the overall health of the mother and the baby. He said the ideal state would be to be on the lowest medication possible to have the disease under control. I told him that I've been flare-free for 6 months now but I've been in remission for 13 months in the past without medication, so 6 months doesn't mean much.
He said that the best thing for me to do is to get back in touch with Dr. Carl Laskin (the best in North American in rheumatology and perinatology) since I've seen him in the past. He said that Dr. Laskin would run bloodwork and give the go ahead based on that on whether we can start trying for another baby and when.
Once I get pregnant, I would see Dr. Shilletto as my primary ob-gyn and deliver the baby at North York General Hospital (not Mt. Sinai or York Central). He also said that I should see a new Neurologist at North York General. That's perfectly fine by me - I never did like Dr. Licorish much anyway.
Now, I must share this... Aamir and I have been talking about just stopping now and not trying for another baby - ever. We have Camran and he's the perfect little child. He is intelligent, quick-witted and cute. Do we really want to risk trying for another baby, risk another flare, risk another miscarriage, risk another seizure and go back to the whole diaper/crying/feeding stage all over again? Taking all that into consideration, I was completely OK with stopping while we're ahead. Well, let's see what happens. I mean, just because the doctors say that it's ok to have another child, doesn't mean that we have to have another one, right? I'll still book the appointment with Dr. Laskin in case there's an oops pregnancy but I don't know if we're actually going to actively try anymore. I promise to keep you posted.
He said that the best thing for me to do is to get back in touch with Dr. Carl Laskin (the best in North American in rheumatology and perinatology) since I've seen him in the past. He said that Dr. Laskin would run bloodwork and give the go ahead based on that on whether we can start trying for another baby and when.
Once I get pregnant, I would see Dr. Shilletto as my primary ob-gyn and deliver the baby at North York General Hospital (not Mt. Sinai or York Central). He also said that I should see a new Neurologist at North York General. That's perfectly fine by me - I never did like Dr. Licorish much anyway.
Now, I must share this... Aamir and I have been talking about just stopping now and not trying for another baby - ever. We have Camran and he's the perfect little child. He is intelligent, quick-witted and cute. Do we really want to risk trying for another baby, risk another flare, risk another miscarriage, risk another seizure and go back to the whole diaper/crying/feeding stage all over again? Taking all that into consideration, I was completely OK with stopping while we're ahead. Well, let's see what happens. I mean, just because the doctors say that it's ok to have another child, doesn't mean that we have to have another one, right? I'll still book the appointment with Dr. Laskin in case there's an oops pregnancy but I don't know if we're actually going to actively try anymore. I promise to keep you posted.
Tuesday, March 2, 2010
It has begun...
I went back to work for the first time in 9.5 months. It was amazing. I actually enjoyed myself and the slight pain in the back of my neck at the end of the day actually made me feel accomplished.
KM, my replacement, went through all of the open projects that she will be transitioning over to me. I used my brain. I asked good questions. I had an hour long conversation about "stuff" with my boss. I saw a whole bunch of people who looked genuinely happy to see me.
I'm glad I took the easy way out and took tomorrow off. I need a break. It was information overload today and, even though I loved every minute of it, I'm happy I have a break tomorrow. Also, waking up at 5:30 am to get dressed for work was not the most pleasant thing in the world. I'm looking forward to just sleeping in tomorrow till 7 am - haha.
KM, my replacement, went through all of the open projects that she will be transitioning over to me. I used my brain. I asked good questions. I had an hour long conversation about "stuff" with my boss. I saw a whole bunch of people who looked genuinely happy to see me.
I'm glad I took the easy way out and took tomorrow off. I need a break. It was information overload today and, even though I loved every minute of it, I'm happy I have a break tomorrow. Also, waking up at 5:30 am to get dressed for work was not the most pleasant thing in the world. I'm looking forward to just sleeping in tomorrow till 7 am - haha.
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