My Journey with Lupus

New and old pains

2011-09-17T02:10:00.000-04:00

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.

There's more to life than Lupus

2011-08-19T15:01:00.000-04:00

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!

Let's talk about lupus

2011-07-21T21:55:00.000-04:00

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.

The Definition of Contentment

2011-07-15T08:38:00.001-04:00

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.

Why does timeshare have a bad rap?

2011-07-10T00:30:00.000-04:00

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:

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

If you google timeshare, you'll see a whole host of websites that offer to sell your timeshare unit and hundred of online forums for people who are trying to get rid of their "scam". The resale value of the timeshare is negligible so my opinion is that if you've already paid over $10K into the plan, why not make the best of it.

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.

When discipline turns into family time

2011-07-08T00:47:00.001-04:00

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!

Family first

2011-07-03T23:14:00.002-04:00

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.

A new beginning...

2011-06-30T23:49:00.002-04:00

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.

Prednisone again

2011-06-18T02:53:00.003-04:00

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.

The true test of keeping lupus at bay... a baby!

2011-05-20T05:18:00.002-04:00

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.

Surprise!

2010-12-10T08:05:00.004-05:00

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.

Great news!

2010-05-06T20:26:00.004-04:00

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.

Busy but fine

2010-04-30T22:06:00.003-04:00

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.

So far so good

2010-04-29T21:09:00.002-04:00

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.

Time for the ultimate test

2010-04-28T22:27:00.002-04:00

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.

7.5 months later

2010-04-22T20:27:00.002-04:00

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.

Sleep problems

2010-04-02T21:35:00.003-04:00

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.

How much is too much?

2010-03-27T02:15:00.003-04:00

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.

Perinatologist appointment

2010-03-10T22:09:00.003-05:00

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.

It has begun...

2010-03-02T22:03:00.002-05:00

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.

2010-02-26T10:01:00.002-05:00

I haven't posted here in a long time but that's a good thing. It just means that life is almost normal now. I sleep well, I stay awake all day, I'm almost done with my novel. In general, life is pretty good right now.

My in-laws return from their 3-month trip this Monday and I return to work on Tuesday. Only 2 days next week and the week after that. I'm so looking forward to going back.

I know this gradual return to work is a good thing, and it's what the doctor recommended, but I wish I was going back full-time already. I'm longing for routine again. I overslept this morning because I couldn't sleep last night and Camran had to miss school. And today was "Special Helper" day too. He was so sad. I made it up to him by allowing him to have Cheerios for breakfast (instead of eggs and turkey) and extra time on his PS3. That made him a little happier. I just feel like if I was back into a proper routine, I wouldn't have the option of sleeping in or staying up late at night, you know?

Anyway, the important thing is that I'm well enough now to go back to what I consider a normal life.

29 days

2010-01-29T21:16:00.003-05:00

It has been 29 days since I've been completely off Prednisone. So far so good. My appetite is back to normal - meaning I don't want to wolf down an entire three-course meal every two hours. My weight is at 112 lbs (51 kg) which I'm very happy with. I still nap every now and then and this past week I napped almost everyday but I'm not concerned about that. I think it's better to nap now whenever I can.

So, in a couple of days, it will be exactly 4 weeks before I go back to work. I feel like there's still lots to accomplish before I go back. I have to complete and submit my novel before the end of February. It's coming all fairly well. I'm almost eager to get this one done so I can start on the next one.

One final thing. I met with my ob-gyn about the new Lupus diagnosis and when she thinks it would be ok to start trying again for baby #2. She has referred me to a high-risk ob-gyn so I'm waiting for an appointment with him. This particular doctor is at North York General Hospital. It should take a month before I get the appointment, though. Until then, we just have to sit tight.

Closer to going back

2010-01-21T21:16:00.003-05:00

It has been a while - a few updates on the Lupus front. I had my last rheumy appointment on Jan 8 and he was pleased with the bloodwork. He said the Prednisone effects will stay in my system for about a month. We discussed a return-to-work date and settled on Mar 2, going back on a gradual return to work. So, the first two weeks, it'll be two days a week, then three days a week for the next two weeks, then four days a week for another two weeks and finally back to work full-time on Apr 12. Right after my 30th birthday.

Sounds weird that I'm leaving my 20s behind in a few weeks. I can't believe all the things that have happened in the last 10 years. Some good, some bad but I've taken something away from every one of those experiences. I had a son, I lost two unborn babies, I was in health-limbo for two years and I was finally diagnosed with something. I found a wonderful company to work for and I'm glad I'm going back there. I've been able to get all the material things I thought were just a distant dream 10 years ago. From all the things that have happened, the one thing that I've learned, is that God's will is in everything. I was such a planner - always have been. Then I realised that I can plan and have goals and dreams but if they're in my destiny, they'll come true. I've learned to make compromises on the things that aren't in my destiny - the things I know I can't change and I've learned to be happy with those compromises and accept them as willful changes in my life. I wouldn't have given up any one of those life experiences because I do believe I've emerged a stronger woman because of it. A woman who has learned to accept things but learned never to give up finding the good out of the bad.

I've been toying with an idea lately. I want to send Camran to private school. Private schools here are grossly expensive but they so far outweigh the public school systems that it seems like a reasonable way to spend money. This is one of those things, that I feel are part of mine, Aamir's and Camran's destiny (or not). The whole reason I started to look at private school is because they re-zoned our school boundaries and the french school that is our "home" school is too far from home and I'm not too keen on the facilities. I did try to talk to our school Trustee and she said that the school board just changed those boundaries and would not be changed again anytime soon. I feel... and I could be wrong, of course... I feel that this happened for a reason. And my whole logic of sending Camran to private school was a result of this event (the re-zoning) that was out of my control. Let's see. We're looking at Sep 2011, when he goes into Grade 1. He's an intelligent boy and gobbles up anything we throw his way. Plus, I look at the benefit of him getting the bilingual IB Diploma (in french AND english) and it seems like a good idea. I graduated with the IB Diploma and in english only and I still think, 11 years later, that it is THE best university preparatory course. Now, I just have to come up with an extra $25,000 a year! But I'm confident that it'll happen and, if it doesn't, then at least I know that I'd tried everything in my power. The rest was up to God and He felt it wasn't the right option.

That's about it. Pretty heavy for a Thursday night. Be back soon. Hugs.

New Year... no time for failure

2010-01-03T21:36:00.002-05:00

Well, the new year is upon us in a big bad way. The temperature in Toronto hasn't gone above minus ten the last three days. The blowing snow cuts through your skin like a precision laser-sharpened swiss army knife. You don't feel it till it leaves you in a pool of blood. Yes, it is that dramatic. And it makes you appreciate the wonderful weather that spring, summer and fall brings.

I'm not one for making new year's resolutions. I stopped making them when I was in the tenth grade and I realised that I never, ever stick to them. I'd rather make smaller, more achievable, more "stickable" goals. So, this year's resolution is simple. Do not skip breakfast. Do not substitute coffee for a nutritious morning meal. Sounds simple enough, right? I think it's something that I will be able to stick to the entire year. Maybe next year I might make a more solid (read universally appealing) resolution. For now, at this stage in my life, I think breakfast is the most important thing I can commit to.

I came off the Prednisone completely on Jan 1. Surprisingly, I have felt absolutely NO effects of dropping the medication. I was expecting to be miserably lethargic, like I was with the last two reductions. On the contrary, I've been energetic and I've been sleeping pretty well at night too. I even stayed up on the first day till almost 2 am and still woke up feeling perfectly fine. That's a pretty good start for 2010, wouldn't you think?

On another note, I've reconnected with some of my friends. I really think I need to get out more. It's too bad that I can't drive but if I can still find a way to get out and meet my friends, then I know I'll be ok when I finally do get my license back. We're also having a small get-together at our house on Jan 23. I'm finally up to having people over and tired of being a recluse. Hope it goes well and my health keeps up.

Happy new year to all of you! Hope the start of this new decade brings a world of good things for everyone. Some of the highlights of the year for me.... one of my friends is to have a baby and I'm ecstatic for her - what a way to start the decade! One of my cousins is getting married. I turn 30 (wow!!) and my mum turns 50 (bigger wow!). I will celebrate my 12th wedding anniversary. I will submit my first manuscript to Harlequin.

Milestones with my readers... feel free to comment here.

It DOES get better

2009-12-22T22:41:00.002-05:00

So, I was a little presumptuous in my last post about not being ready for the reduction. I did get used to it and by Friday I was able to go without an afternoon nap. Not that I'm avoiding taking a nap when I need it. I sleep when I need to but I don't feel that overwhelming desire to sleep right then and there, on the spot. I've been back to normal since yesterday. However, I will trust my initial instinct and reduce to 0mg on Jan 1, not on Dec 28. I think it will do me good to get used to this slowly. Once I go to 0 mg, there's no turning back.

I've been thinking of my gradual return to work schedule. Probably do 2 weeks of 2 days, 2 weeks of 3 days, 2 weeks of 4 days and then go back 5 days a week by Apr 12. I think that's reasonable. But only time will tell.

Harder than expected

2009-12-17T00:23:00.002-05:00

I would have thought that going from 5 mg to 2.5 mg of Prednisone wouldn't be so hard but I've been proven wrong, yet again. The first day was fine, nothing out of the ordinary. Then, on Tue and Wed, I started feeling the effects. I've been lethargic and sleepy all day long and I had a nagging headache all day on Wed. I'm wondering if maybe I'm not ready to reduce the dose yet. I'm going to give it one more day and, if things don't improve, I'll go back to 5 mg. My Rheumy did say that it might appear as if I'm going through a flare for the first 3 days after the reduction. That would mean I should start feeling normal by Fri considering I'm not going to count Mon since, for some reason, the reduction doesn't affect me on the day I actually reduce. Strange. The only other time, I felt the reduction was when I went from 7.5 mg to 5 mg. I was totally expecting that, though, since your body naturally produces 7.5 mg of cortisone and by going down to 5 mg, you're forcing your body to start producing again. But, this reduction difficulty came out of the blue.

I was supposed to taper to 0 mg on Dec 28, but I might just postpone to Jan 1. I'm not going back to work till Mar 2 so I have time.

Returning to Normalcy

2009-12-14T15:44:00.002-05:00

It's been a couple of weeks since I've posted here. It's been an interesting two weeks. First off, I reduced my Prednisone down to 2.5 mg today. I had my regular afternoon nap for 45 mins and was fine after that. Let's see how the next 2 weeks go. More importantly, I am curious to see how I am without the medication at all.

My mother-in-law and father-in-law left for India last week and the week leading up to it were pretty hectic. Not because I was involved in their packing or anything. More because I was taking over some of my mother-in-law's responsibilities. In a way, I think it's a good thing. It's not a whole lot but enough to have a few additional things on my daily to-do list. It's a good thing because they're going to be gone till March 8 and I plan on going back to work on a gradual return to work schedule on March 2. This is a good primer for me to get into the habit of doing a bit more but in the comfort of my own home.

I had a long chat with my VP last Friday. She had no idea about what was going on with me. About the seizure, about the driver's license, about the lupus, nothing - she had no clue. I was a so mad with Liz for not having told her but then I learned that Liz has been in and out of the hospital herself over the last 2 months. I must call her and see how she's doing as well.

On another note, I got approved for long term disability and got my first cheque for the period Nov 20-Dec 11. I should be getting cheques on Jan 11, Feb 11 and Mar 11 before I go back to work.

I have a few appointments lined up in the next month: Family doctor appointment on Dec 17. Rheumatologist appointment on Jan 8. Obstetrician appointment on Jan 27 (I never did end up seeing her for my post-op appointment after the miscarriage because I was in Dubai and then in the hospital). I will talk to her about when it would be safe to try for another baby.

Update

2009-11-30T17:31:00.002-05:00

I just realised that I haven't updated this blog in ten days. I guess there hasn't been much to report. Things have been going fairly smooth the last few days.

I reduced my Prednisone down to 5 mg today. I was supposed to reduce it on Nov 26 but I didn't because that was the day I had to be at Camran's school for his Observation Day. Then on Friday, we had a dinner party at our house for Eid and I knew I would be busy and required to stay up late. Then, on Saturday, I had to go with Aamir for Karaoke for the finals and I knew that would also be a late night. Anyway, so I ended up just reducing the dose today. Let's see how it goes.

I also had my rheumatologist follow-up appointment today. All looks good as far as blood work is concerned. My complete blood count was all within the normal range, including iron. I asked him about my rash and he said that this rash would not even be considered a mild rash from Lupus standards but he did note a faint rash. He recommended that I use a moisturizer with a high SPF because it might be worsening due to the sun. He did say that even though it's autumn and there really isn't much sun these days, the UV rays still come down through the clouds. So, got it, need a high SPF moisturizer.

That's about it. I hope you're keeping up with my other blog too. Just finished 19,500 words of my novel and it seems to be progressing well. Ciao.

Things About My Invisible Illness You May Not Know

2009-11-20T09:31:00.002-05:00

1. The illness(es) I live with: Lupus, Seizure disorder
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: 2005 regularly but on and off since 1993
4. The biggest adjustment I’ve had to make is: stopping when things get crazy
5. Most people assume: I am just fine or not doing enough to get better.
6. The hardest part about mornings are: getting out of bed and staying out of it.
7. My favorite medical TV show is: Who has time for TV
8. A gadget I couldn’t live without is: my laptop & BlackBerry
9. The hardest part about nights are: insomnia bc of Prednisone
10. Each day I take _about 8_ pills & vitamins.
11. Regarding alternative treatments I: Not ready for alternative treatments yet except for eating a proper diet.
12. If I had to choose between an invisible illness or visible I would choose: visible
13. Regarding working and career: I think I'll be ready to go back in 2 months
14. People would be surprised to know: I love my meds - they make me feel better
15. The hardest thing to accept about my new reality has been: this is it. This is my life now.
16. Something I never thought I could do with my illness that I did was: Be a stay-at-home mom and keep myself busy all day
17. The commercials about my illness: I've never seen one for any of the diseases I have.
18. Something I really miss doing since I was diagnosed is: driving. My license was revoked after I had a seizure.
19. It was really hard to have to give up: being in control of everything
20. A new hobby I have taken up since my diagnosis is: Writing a blog and a romance novel for Harlequin. It has maintained my sanity.
21. If I could have one day of feeling normal again I would: spend it playing with the family.
22. My illness has taught me: accept that everything happens with God's will
23. Want to know a secret? One thing people say that gets under my skin is: "If you'd get out and exercise more...."
24. But I love it when people: help when I really need it.
25. My favorite motto, scripture, quote that gets me through tough times is: This will pass
26. When someone is diagnosed I’d like to tell them: It's overwhelming and scary but you will be OK.
27. Something that has surprised me about living with an illness is: how many other people have the same issues I have.
28. The nicest thing someone did for me when I wasn’t feeling well was: taking care of Camran so I could just deal with the pain on my own time.
29. The fact that you read this: means you want to know about what's wrong with me :)

So sleepy...

2009-11-18T20:43:00.002-05:00

I don't know why... but I'm sleepy all over again. I suppose this is normal since I've reduce my Prednisone down to 7.5mg. No more insomnia here. I must say, I was quite enjoying staying awake till all hours of the night, in the peace and quiet, and then waking up 3 hours later, totally refreshed and energized. Guess that can't be too good for the body.

Well, I'm paying for it now. Today I had to nap in the afternoon. Normally when I nap mid-day, I just doze, never fully going into the REM stage. This afternoon, I fell into Camran's bed as he played his PS3 and woke up an hour later to a quiet, empty room. I think I even had a dream in that hour. But it was good. I definitely woke up feeling a lot more energized.

Taper continues

2009-11-12T21:00:00.002-05:00

I tapered Prednisone to 7.5mg today. I slept really well last night but around 1:30 pm, after lunch, I started to get really sleepy. The good thing was that I just needed 15 minutes of shuteye and I was well-rested and alert again. I'm taking that as a good sign.

Another piece of news... my weight went up to 106.6 lbs (48.5 kg) today. A whole pound and a half from 2 days ago. I'm sure part of that is the Prednisone working but part of it is the amount of food I'm consuming. I eat every 2 hours. Of course, the Prednisone makes me hungry all the time so I hope I can keep up with this eating even after I go back to work.

One natural consequence of putting on weight is that I'm getting pudgy. Yes, around the middle (which never really went away after I had Camran). So, I started a new exercise regime. Just 3 different exercises working on abs, upper thighs and upper arms (started with 2 sets x 15 reps). I plan on continuing this for the next 12 weeks and work up to a more rigorous routine once I'm back at work. Tomorrow I'm also going to start my walking "program". Just a quick walk around the block to start. The weather is cool now, but some long underwear, my down-filled jacket, hat and gloves should keep me protected. Once the winter really hits, I might have to stop with all the snow on the ground. Although, really, that's not an excuse since I have amazing winter boots now.

In other words, I'm all out of excuses to not live a fairly normal life. Aside from the fact that I'm taking 8 pills a day, I'm feeling alright. The definite plus to all this is that I know now that the pills work in the event I'm faced with another flare. Just that makes me feel so much better. The familiar feeling of having control (or at least some semblance of it) is coming back. :)

Update

2009-11-10T21:21:00.002-05:00

I had an appointment with my neurologist this afternoon. Turns out the 2nd EEG test I did back in October was completely normal. The "slowing" that had shown back in September was not detected this time. Having said that, she said I should continue with Keppra at the current dose (1000mg/day) till at least September 2010 and then, if there is no further seizure activity, we can start tapering that dose.

I took the opportunity to ask her if Keppra was ok to use during pregnancy. At some point in 2010, I would like to try having another baby. I know that Predinisone and Plaquenil are both ok during pregnancy but there are virtually no studies on Keppra. She said it should be fine to use Keppra during pregnancy but she did advise to take a high dose of Folic Acid (minimum 5 mg) before I actually get pregnant. She said the most impact these drugs have on a fetus are physical and spinal deformities and those are determined in the first 6 weeks of life in the womb, well before a woman even knows she's pregnant. She also said that there are two high-risk obstetricians at York Central Hospital who I would most likely be referred to should I get pregnant. That made me feel better. I messaged a friend of mine from work who was on a 5mg dose of folic acid after her first miscarriage (her 2nd baby is perfectly healthy) and she said she was taking something called PregVit. It is a prescription drug, not over the counter so I have to ask my rheumy about that at my Nov 30 appointment. It will be in God's hands after that.

My weight reached 105 lbs today which I was grateful for, but I have a problem which has been getting more serious over the last week. I have nausea all the time. It started with random bouts throughout the day which would get better after I ate something but the last two days, the nausea has been constant and I've come close to vomiting a couple of times. The only thing I think of is that nausea is a side effect of the Plaquenil. I've been on Plaquenil for 2 months now but I didn't think the effects would show so soon. In fact, I was under the impression that Plaquenil didn't have side effects at all (besides the eye thing). I guess we'll wait and see how it goes. I have to remember to mention this to the rheumy on Nov 30 too.

Other than that, the insomnia continues randomly. I was awake till 4 am last night (or this morning) but the good news is that the insomnia is much less frequent than it was a couple of weeks ago. I do sleep well most nights these days.

I'm going to taper my Prednisone to 7.5 mg starting Nov 12. Here's hoping that goes alright. So far, the tapering has been going well (thank God) so I'm hoping I can taper to zero mg without incident and keep it that way.

Expressing yourself

2009-11-07T23:07:00.002-05:00

I was speaking with my sister-in-law today and I came to the conclusion that life doesn't always come together the way we plan it. We were talking about fate vs. destiny and how much control our decisions in life really have over our eventual fate. Are we already destined to be in a certain place at a certain time? Or do the choices we make over the course of our lives actually influence where we're going to end up.

I've had plenty of opportunity to think about this. Take Lupus, for example. the cause of lupus is unknown. I don't believe I did anything harmful to myself for getting this supposed "genetic" disease. They don't even know what combination of genes cause the disease. Therefore, I believe, it's safe to say, that I had no input in whether this disease would become part of my life or not. Ergo, since it was out of my control, the only other being that would have had the power to put this in my life would be God.

Now, obviously, I will not judge how God makes His decisions. I've been dealt with something - no questions asked and no options otherwise. How I choose to deal with it, though, is the real test. This is where it gets tricky so try to follow.

I have the choice of wallowing in self-pity, staying home, lying in bed and getting depressed. All those things are within my reach and people don't know enough about the disease to actually dispute my feelings. I could take that route and totally get away with it. On the other hand, I could take the medication diligently, make myself useful when I'm feeling good, do whatever I can to express myself and be able to talk about my views on the situation (my way is to blog). But, above all, I can take this "forced" rest as an opportunity and a sign from God that I should be more diligent about what is required of me as a muslim.

Before I got really sick, I used to make excuses for why I couldn't perform the five daily prayers. I was busy, I was at work, I was out, I couldn't make it home on time. There were a plethora of excuses. I could have even prayed kaza, but then there would be the excuse of being too tired at the end of the night to make up for the other four times that I had missed. I knew it was wrong. I didn't shouldn't have had any excuses but I made them anyway.

Now I'm sick and I'm stuck at home. Like I said, I could use the time to surf the internet or just lay in bed. Or I could get my ass up, interrupt whatever I'm doing (which, let's face it, isn't really that important in the grand scheme of things), make wodhu and stand for prayer. It's simple really. No excuses, no reason not to do it. And in my salah, the one dua I make (amongst others), is to help me deal with whatever He has in store for me. For sabr, for guidance, for faith in His decisions.

I'm finding it gets easier every day. Most of all, there is a sense of peace in my heart. I know now that there was a purpose to all this happening to me and I'm grateful that I've been able to find that purpose. There may be other reasons which I may or may not discover as time goes on and which God, in his infinite wisdom, may or may not reveal to me. But He has revealed one reason and I'm taking it. It's a basic thing really, almost nothing to write a whole blog post about, but in its simplicity lies its significance. For me, anyway.

Nostalgia

2009-11-01T00:53:00.002-04:00

I have recently discovered Elvis Presley's music and I can understand why he was considered the King of Rock. His music is awesome and I keep listening to some of the older songs over and over again on You Tube, especially as I write my novel.

Anyway, I thought of reading about Elvis' troubled life on Wikipedia. His bio brought be to Priscilla Presley's bio and I remembered her being on Dallas for a while. Remember Dallas, the TV show from the 70s and 80s? Well, I had all but forgotten but then I decided to search for the Dallas intro on You Tube and wham! Nostalgia hit me from no where. Tears sprung into my eyes as I remembered every scene from that intro, watching it on Friday nights right before bedtime. My mum never let me actually watch the show because she said the content was too adult for me at the time. I must've been between 4 and 7 years old (can't be sure) but she would let me watch that intro and it has been etched in my memory forever, lying dormant, to come back in vivid pictures as it played again in front of eyes today. I still remember being completely in love with John Ross, who, I was reading just now, was just about my age on the show.

Isn't it funny how you never forget certain things. How you don't want to forget certain things. I would never have imagined back then that nearly 25 years later, I would be listening to the theme song from Dallas in the middle of the night and weeping. How much of those dormant memories shape us as adults? I happened to remember the intro from Dallas but those shiny buildings and the cattle ranch has indelibly been etched in my psyche. Enough to move me to tears apparently.

Sometimes I wonder where I'll be 25 years from now. Whether I'll remember these days of angst and uncertainty and think that it was all foolish because I'll be wiser. I used to think it was so unfair that my mother got to watch the show and I had to go to bed. But I do the exact same thing to Camran now. He's in bed by 7:30 pm and Aamir and I watch our movies after that. Such is the circle of life.

More Tapering

2009-10-30T13:37:00.003-04:00

I reduced my Predisone by another 2.5 mg yesterday down to 10 mg per day. I get sleepy a lot more these days than when I was on the 15 mg per day dose. That could also be the weather. Toronto weather in October/November is just miserable.

I have to go in for another blood test in three weeks. I'm feeling a lot better now so I'm hoping that I stay that way and that my blood work shows it.

I've been sleeping the last 2 nights too. Not sure if that's because of the Prednisone taper or just that my body's wary of sleep depravation. It almost seems like I don't sleep for 2 nights (or very little at 2-3 hrs a night) and then sleep a full 10 hours on the third night. I can't wait to be off this medication.

I left a message with Dr. Licorish's office for a follow-up appointment to the EEG I did last week. Haven't heard back yet. I also left a message for RBC Insurance. They were supposed to call me back early this week with an answer on whether my LTD was approved or not. Haven't heard back from her either. Looks like I'll have to follow-up again next week.

New Blog

2009-10-26T23:49:00.001-04:00

I finally started my romance novel blog. Here's the link. You're welcome to visit anythime.

http://awriterslife-sadaf.blogspot.com/

2nd EEG and Other Stories

2009-10-21T23:39:00.002-04:00

I had my follow-up EEG today. It was a lot more goopy than I remember it being. And I don't remember the flashing lights last time. Got to the hospital at 9:15 am as they asked and didn't leave till 10:45 am. The technician said that the results take 2 weeks to come back. I need to make a follow-up appointment with Dr. Licorish (neurologist). The last time she said the EEG showed a definite "slowing" of brain waves. Apparently, "slow" brain waves are indicative of previous seizure disorders. This EEG should show the brain activity back to normal. We'll know in two weeks.

I've realised that I can't eat fast food anymore. The last time I ate McDonalds my stomach was upset. We ate at Burger King today and it tasted so good but I spent way too much time in the bathroom afterwards. Is that TMI?? Slowly but surely everything that I considered remotely "fun" is inaccessible. I can't even eat a hamburger anymore!

Staying home does have its advantages, I must say. I certainly have more time to do stuff. My weight hasn't gone up yet (still wavering between 100-101 lbs) but I think that's because I sort of dropped the ball on eating every 2 hours like I should be. I get to spend more time with Camran. I get to write whenever I feel like. I get to sleep whenever. If I could drive, this would be perfect. Except the money bit. If I could stay home all the time, I would. But not having enough money to play with doesn't make staying home worthwhile. It's fine for a little while as I get better, but it's not a long term situation. I will be going back to work at the beginning of February. Maybe even by Feb 1. Start with 2 days a week for a couple of weeks and work up from there. That is, of course, if they approve my LTD. If I get declined for LTD then I have to go back to work immediately. Not the ideal situation since I really don't know how I'll react to further steroid dosage decreases but I can't stay home with absolutely no income. Impossible.

Speaking of dosage reductions, a week has passed since the lowered dose of 12.5 mg of Prednisone. So far, I have noticed no changes in my symptoms. Still have insomnia. On Monday night, I didn't sleep at all. Finally fell asleep at 5:30 am on Tuesday morning and then had to wake up after an hour and half to get Camran ready for school. I thought I would crash after I dropped him off but that didn't happen. I was wide awake. I slept last night. Let's see what happens tonight. It's 12:24 am right now and I'm still wide awake.

Day 2 of Taper

2009-10-16T20:07:00.003-04:00

Today was Day 2 of the Taper, with a capital T. I slept fine last night and, though I had to lay down this afternoon around lunch time, I didn't actually sleep so I should be fine to sleep tonight.

I had my phone interview with RBC Insurance today. She asked me all sorts of questions about how I'm feeling, what the prognosis is and what my typical day looks like. I was truthful in saying that I'm coping with the side effects of the medication, particularly the steroids. My days are unpredictable and I need naps or rest periods (where I just need to close my eyes) throughout the day and at a moment's notice. I told her I want to get back to work as soon as possible not just because of the money but also because staying at home ,with no car, and being dependent on others is difficult for someone who has always been independent. She was non-committal, of course, but she said she'll forward the information to the clinical specialist and see if it is sufficient to make a decision or if they need more information. Either way, she will get back to me by the end of next week or early the following week.

I'm trying my best to be diligent about my daily prayers these days too. Haven't managed to wake up for Fajr prayers yet but I try to do the other 4. And I involve Camran too. He seems to be enthusiastic about it. I've told him to recite the surahs he knows (only 2 so far but it's something) and follow my lead with the actions. He sounds so cute, whispering the surahs. Then after he does salaam, he crosses his legs and does dua, asking God for more toys, naturally. Must teach him about worldly things... soon.

I inquired about karate lessons for him too. I think the discipline will be good for him. Plus it's a life skill he won't regret having. The cost wasn't too bad either. It comes out to $105 per month and that includes uniforms. My sister-in-law, and I are going there on Monday with the boys for their assessment. The sensei said that some 4 year-olds aren't ready yet so she has to assess Camran. My nephew has already been for one "semester" of karate so I don't think it should be a problem for him.

Still plugging away diligently at the romance novel.

Good News

2009-10-14T22:57:00.003-04:00

I had my follow-up rheumatologist appointment today. My blood work showed some serious improvements. WBC is back to 6 (it was 1.7 when I left the hospital). Hemoglobin is withing normal limits too, though on the low end. I definitely feel a lot better.

Based on this information, he suggested that I start tapering my Prednisone by 2.5 mg at a time every 2 weeks, starting tomorrow. So, starting on Oct 15, I will take 12.5 mg of Prednisone for a minimum of 2 weeks or however long it takes for me to feel good again because my body will react negatively to the reduction in dosage, even something as small as 2.5 mg. Once my body gets used to the 12.5 mg, I should go down to 10 mg and then to 7.5 mg and then to 5 mg. He said the change from 7.5 mg to 5 mg is usually the hardest and takes the longest.

Dr. Sugai was saying that having blood work that reflects the patient's overall "feeling" is a good sign. For most patients, the blood work and their general feeling is not consistent. This means the disease will be easier to manage because my outward symptoms are reflective of what's going on inside my body, for me anyway. He said that the next time I start to feel run down or see a fever coming on, I could possibly go in and get blood work done and then call the office for a phone conversation or appointment to start the Prednisone up again to control the flare.

We also talked about my returning to work. He asked me when I was thinking of going back and I said February 2010. He agreed and said that I should talk to my employer about returning on a modified schedule. He suggested starting with 2 days a week and building it up slowly. I have a follow-up with him on November 30 and another appointment on January 8. We should be able to draw up a return-to-work plan by the Jan appointment, hopefully.

I was very pleased with today's appointment as I feel that I'm on the road to finally managing this disease. Of course, I know I still have to deal with the effects of reducing the Prednisone and coming off it completely but I'm hoping, God willing, that it's a quick and easy journey for me.

Now I just have to follow-up with York Central Hospital on that EEG test that they were supposed to schedule me for. Stay tuned.

Good news on my romance novel. I finally wrote down a plot last night. I'm very pleased with it and feel like I can finally start writing my novel in earnest. I'm going to start another blog to document this. I'll post a link as soon as it's set up.

Thanksgiving weekend update

2009-10-12T21:32:00.003-04:00

This weekend was the Thanksgiving long weekend in Canada. On Saturday, we were out running errands again. I had to refill my prescription for Keppra and Plaquenil and buy groceries for next week.

I went on my mystery shopping assignment on Saturday too. I was surprisingly nervous but it was easier and quicker than I thought. I submitted my report by 10:30 pm but I haven't heard back on whether the report was acceptable or not. I'm still not entirely convinced this isn't a scam so I'm not signing up for any more assignments until I hear back with confirmation that they're going to pay me my $13.

On Sunday, Aamir's uncle invited us for lunch at this Chinese place in Brampton (west end of the greater Toronto area and about 40 mins from my place). The food was pretty good and I ate like a pig, naturally. Gotta love the steroids! Anyway, then his uncle and aunt came back to our place and we ended up playing cards till 1 am. It was fun and I didn't lose every single hand I played like I normally do.

Today was a relaxing day. I prepared Camran's lunch for tomorrow and cut up his chicken for the rest of this week. Prince Camran only likes the barbecue whole chicken from Loblaws. I was grateful to God that I don't have the joint pain because all that cutting and chopping would not do good for my finger joints. I don't have the joint pain problem and my fingers were still a little stiff after that. I prepared my tuna salad for the week too so I'm set till next weekend.

This week on Wednesday I have my follow-up Rheumy appointment. He's going to go over the blood work I did last week and hopefully start tapering my Prednisone dosage. Not looking forward to that as I've heard some pretty bad horror stories of the taper process. We'll see. I'm on a pretty low dose now anyway (only 15 mg a day) so hopefully, it won't be horrible.

Couple of things to do tomorrow:
- Call work and retrieve my personal folder from my drive at work
- Call York Central Hospital and follow-up on my EEG test appointment
- Work on my romance novel

Speaking of my romance novel... I'm stuck. I thought I had a plot but now I'm second guessing myself. Instinct tells me that I should just write and worry about logistics later but the planner in me tells me to outline everything before I spend hours and hours writing. My goal of writing 1500 words a day has been suspended for the moment till I get the plot issue figured out.

Mystery Shopping

2009-10-09T20:12:00.004-04:00

My romance novel isn't progressing as well as I thought it would. I have about 6000 words so far and I'm floundering (I think). I was reading "Writing Romance" by Vanessa Grant and realised that my characters are not as well developed. Apparently when you know your hero and heroine intimately, the story sort of writes itself with the broad direction you give it through your basic premise. I'll try it and see if that works.

On another note, I signed up for mystery shopping assignments. There are companies out there who hire mystery shoppers for other companies (usually retail, sometimes restaurants) and these mystery shoppers pretend to be real shoppers and check for things like store appearance, customer service, etc. and then write up a detailed report on their experience. I didn't think I would get anything so soon but I have my first assignment tomorrow. I'll let you know how it goes.

Oh yeah, about the lupus... I'm feeling great these days. I've been feeling energetic. I actually slept last night. Passed out is more like it. I was dead to the world till 6 am this morning. It was great!

Follow-up with Neurologist

2009-10-06T20:37:00.004-04:00

I went for follow-up appointments today with the Neurologist and Infectious Disease doctors at York Central Hospital. Dr. Licorish, the neuro, recommended that I stay on Keppra. She said that most people get used to the side effects and it really does cut the incidents of seizures significantly. She said I should stay on it for at least a year or two and then wean off slowly. I could come off it now but there would be the risk of having another seizure which I'm not willing to take. So, for now, I continue with the Keppra. I told her about the anxiety and restlessness that I felt and she said that, over time, I would get used to it. But I was at a high risk of having another seizure if I stopped the medication. She wants me to go for another EEG and then follow-up with her again. Also, the infectious disesase doctor said that there doesn't appear to be any kind of infection in my system so I don't need to see him again. So that's a positive thing.

I thought the insomnia had gone but I still suffer from it. I slept at 4 am again this morning and woke up to take Camran. The good thing about staying up late at night when everyone else is asleep is that I get to write my novel. I've made some good progress and I have about 8,000 words down on paper. Not all of it is perfect and I might edit most of it but at least it's down. I have 3,300 words of good solid novel prose written. The rest is a lot of filler stuff but it's important all the same. I have a goal of writing 1,500 words every day and I should be done by mid-November, leaving me with over a month of editing and rewriting. I should still be able to meet my December 31 deadline.

Shout out

2009-10-03T20:49:00.005-04:00

Just wanted to post a "We're thinking of you" shout out to my cousin, Almaas, who's going through a rough time right now.

Gone with the insomnia

2009-10-03T19:51:00.005-04:00

Last night, for the first time in a week, I slept uninterrupted. Camran didn't crawl into my bed till dawn, so I actually got 7 hours of uninterrupted sleep. Complete bliss. So, it appears that I've overcome the insomnia. Of course, as Aamir would say, a single data point is not sufficient to draw an accurate conclusion. I'll keep you posted on the insomnia situation.

I was supposed to go for my routine lupus blood test today but the lab closed early for some reason. This was in preparation for my appointment with Dr. Sugai (Rheumy) on Oct 14. Labs are all closed on Sunday so I'm going to have to do this blood test next week sometime. I have an appointment with the Infectious Disease doctor, Dr. Chen, on Wednesday at York Central Hospital, so I might just go down to their lab and get it done there. They take like, 12 vials of blood for these tests.

Aamir bought these HUGE prime rib steaks last night (he tells me they were about 1 lb each - that's half a kilo!!). We broiled them in the oven for 20 mins and, let me tell you, these steaks were better than any Keg prime rib! And I would never ever say that unless I meant it! I steamed some asparagus with them and it was a perfect meal. I could only finish half of mine so I had the other half for dinner tonight. Clearly, I'm feeling a lot better!

I also continued working on my romance novel. I wasn't too happy with my plot last night so I got a recent Harlequin book from the library today just to see how far off the mark I was. I think my story/characters are just fine. So far I have about 5 pages down of my story and I need to write about 200. I 've set a goal for myself (surprise, surprise). I am aiming to send out my manuscript to the Mills & Boon office by December 31. I'm banking on the fact that most people are going to be busy with the holidays to have time to submit manuscripts so there will be less of a "pile" to contend with.

Insomnia and Ideas

2009-10-01T23:04:00.009-04:00

I haven't slept a full night's sleep since Friday, September 25. Last night (or this morning), I slept at 4 am and woke up again at 6:45 am to get Camran ready for school. After dropping him off, I crashed and slept for another three and a half hours but it was a fitful sleep and I kept having strange dreams which I couldn't remember after waking.

Other than that, I'm feeling a lot better. The side effects of the medication are starting to minimize. Either that or I'm just getting used to them. I eat practically every two hours but my weight is still 100 lbs (just looking at my last post). I went to see my family doctor today and he prescribed me sleeping pills to aid with the insomnia but I'm not interested in taking anymore pills.

Other notable events: Aamir mailed out my Long Term Disability forms today (as planned). I prepared a monthly budget to manage our finances better (as planned). We bought Camran his winter jacket and snow pants as well as a warmer fall jacket (as planned). I love it when things go according to plan.

About my romance novel; last night I listened to a podcast by the editors of the Harlequin Romance series and I think I really have the makings of a decent novel. It needs to be refined - and written - but I do believe I have the main elements down. I've also been reading "Writing a Romance Novel for Dummies". It's written by the executive editor of Harlequin so the information is similar from the podcast. I think I'm ready to start refining my outline and then actually writing my book. In one of my previous posts, I mentioned the money aspect of writing Harlequin romances. Well, I researched the money aspect of it and the bottom line is that I can't quit my day job yet. First time authors only get an advance of $1,000-$1,500 for the entire novel - that is, only if the publisher buys the manuscript, of course. Still, it's not a bad bit of pocket change. I might start another blog about how that whole process is going.

One out of four aint bad

2009-09-28T21:40:00.005-04:00

I only managed to accomplish the first out of the four To Do items in my last post. Still, I guess one out of four aint bad. The fact that I can do even one of those things is incredible. I'll work on the other three tomorrow.

I completed my portion of LTD forms. I also got a call from Dr. Sugai's office saying that his section of the forms were ready for pick-up. I'll go at some point this week and pick them up. The LTD application form should go out to the insurance company by the end of this week.

Interestingly enough, I have a really bad cold. Runny nose mostly and a sore throat. Aamir gave me the sickness but I don't think it's serious. Both Aamir and Camran had it last week and both got better within two days. Today was day number one for me. Technically, I should be better by mid-week.

I should also report that on Sep 16, I was 94 lbs. Today, almost 2 weeks later, I am 100 lbs.

I was supposed to go to the library today and pick up three books that are available for pick-up but it got late by the time I put Camran to bed. Plus Aamir was trying to connect our PC to the PS3 using the wireless internet - it worked.

Rising energy levels

2009-09-28T01:28:00.008-04:00

I realised yesterday that I have it all wrong. Instead of going with my own personality and setting a goal for myself, I was wallowing in pain and trying to be someone I'm not, i.e. the pitiful sickly person.

So, here's the plan. I'm going back to work on Mon, Jan 4, 2010. Full time.

Now that I have a goal, I feel better. I haven't communicated this goal to anyone yet. Things may not work out and I might have to change that date. But, as of right now, I plan on getting back to work on that date. I need a target. That's just me. I can't just "wait" for life to happen to me and I've never been a "wait and see" type of person. I need to know NOW.

I also realised that I need to do something till that date. My energy level was pretty high today so, instead of buying barbecue chicken from the store for Camran's lunches next week and paying $7.99, I made my own chicken. I broiled it in the oven in garlic and lemon and it turned out pretty good.

I also ordered a whole bunch of books from the public library on various subjects, like Lupus (of course), writing a romance novel and parenting. I need to keep busy till that Jan 4 date.

List of things to do for tomorrow:

Print out and complete LTD forms
Retrieve Personal folder from work
Organize payment plan for debt with Aamir
Follow-up with Dr. Licorish (I hate the Keppra)

I feel so much better now that I have a back-to-work date in mind. I figure even if I can't drive, I can still go back to work. I'm a planner by nature, you see. I need goals and objectives even if I sometimes procrastinate and things don't go according to my perfect plan.

Good Week

2009-09-26T21:06:00.003-04:00

I've been going crazy researching the side effects of the various drugs I'm taking to control my situation. The verdict: Too many to mention! Keppra makes me feel like I'm drunk. I feel like my words come out slurred (although, admitedly, no one else notices) and my limbs move slower than I would like them to. While the thoughts inside my head are pretty coherent and normal, they don't quite sound right when I try to articulate them. I've been on Keppra regularly for two weeks now and the side effects don't seem to lessening. I'm assuming my brain will get used to the slower activity but I've been unable to find out exactly how long it takes to get used to this medication. According to my Google searches, it varies by person.

Thursday and Friday were excellent days for me, relatively speaking. On Thursday, I went with my father-in-law to drop Camran off at school, showered, ate a few times, picked him up from school and went to Shoppers Drugmart for a brief shopping trip. Friday was much the same as far as my energy levels were concerned. We went out today to run various errands. We left the house at 10:30 am and didn't return till 4 pm. Then after about an hour, Aamir decided he wanted to go grocery shopping. Since I had stuff on my list, Camran and I went too. It was too much for a single day. Tomorrow we have to go a cousin's kids' birthday party. I also have to prepare chicken for Camran's lunches for next week. Judging from my energy levels the past couple days, I don't think it's going to be a problem.

The thing about this illness, I'm finding, is that you have to take your body's cues. When you feel tired and your body begs rest, take a nap. Today was a hectic day and I think I packed in too much into six hours. I would never admit that in the past. Now it feels almost therapeutic to admit that there is such a thing as too much. It's ok to be tired. It's ok to have limitations.

That said, one of the things that I think I really need to start working on... writing my Harlequin romance novel. I have a storyline already. I want to start writing it. I was on the Harlequin website today and it said it could take up to a year for a novel to get published if it is selected. Based on that, if I want to make any extra money at all, I better start moving. At least it will give me something productive (and potentially money-making) to do during the day. Maybe I can post snippets here after I'm done and you can tell me what you think.

Follow-up with rheumatologist

2009-09-23T21:37:00.008-04:00

I had my rheumatologist appointment this morning. Dr. Sugai and I spoke for an hour - it was the longest doctor's appointment I've ever had!! It turns out my case is not as cut and dry as most. Not that most Lupus cases are cut and dry! Turns out there has been considerable discussion about me and my medical case in the York Central Hospital physicians' world. Dr. Sugai spoke to the attending physician (Dr. Lam) and the other Rheumatologist (Dr. Kagal) on seperate occasions about my specific case.

In a nutshell, I do have lupus and the seizure is probably attributed to the disease. Here's what he said:
- I should continue with 15mg of Prednisone a day till October 14 and then go back for a follow-up appointment with Dr. Sugai.
- I need to continue with the Plaquenil 5 days a week
- I need to continue with the 500 mg of Keppra and schedule an appointment with the neurologist (Dr. Licorish) so she can monitor the Keppra dosage, prescription and side effects.
- I have to go in for a repeat blood test before my October 14 appointment.
- The Keppra is making my brain activity slower than normal (including speech) but that's normal. I guess eventually my brain will realize that this state is normal and will "forget" my normal self of 3 weeks ago. The brain is a complex organ. The good thing is that the MRI showed nothing wrong with my brain so that's encouraging. I do know the neurologist had wanted to do another EEG test. I'll keep you posted on that one.

Other than that, today was a pretty good day. I was a little lightheaded but not too much. I managed to keep Camran on a fairly good schedule all day and he actually listened to me with minimal coaxing. I think he's finally getting used to my being home and my being the primary caregiver once again.

Getting more done

2009-09-21T22:16:00.005-04:00

I made some calls this morning and set up appointments with my family doctor and my Rheumatologist. How I'm going to get to my appointments is another story. I received a letter from the Ministry of Transportation today saying that I had to mail my driver's license in immediately. I don't really want to rely on my father-in-law for rides but I don't have much choice.

I got through Eid fine. The family came over and I lasted the whole day without going upstairs for a nap. That's a major accomplishment for me. Of course, by 8 pm I dropped into bed shamelessly.

I started filling out my LTD forms. I'm almost done. I just have to put down all my prescriptions and their dosages. It made me feel really sad to complete the form since I've always been on the "employer" side and never the patient side. I just hope they approve me as mt short-term disability will run out at the end of November and after that I'll be income-less.

Today was not such a good day, physically. The good news is that my ears aren't blocked anymore. I did, however, have a headache for most of the day. I managed to avoid taking Tylenol, though, as I don't really need anymore medication. I just rubbed Vicks on my forehead and coped that way (kind of like our school nurse would do). I didn't nap today but I did lay down a lot. And I spent time with my son for the first time in weeks. I think he really misses me which causes him to misbehave and not listen to anyone. I think he gets genuinely scared that I might not come back from the hospital someday. It must be hard for a 4 year-old. I ended up making his breakfast, lunch, dinner and the next day's snack and lunch for school. So, I guess I accomplished enough.

One of our aunts came to visit me today and the first words out of her mouth "You look really good!". That was pretty much what everyone said at Eid too. No one really understands that I feel miserable inside. Maybe I need to get better at expressing my pain at the risk of sounding whiney. The good news is that my energy levels seem to be increasing. I can do more everyday. Tomorrow is another day...

Finding out

2009-09-18T21:17:00.005-04:00

So, it has been confirmed. I have lupus. I've suspected for a while now but it took a seizure for the doctors and everyone else around me to confirm. On August 31, 2009, I finally convinced my Rheumatologist that the continuous high fevers weren't normal. He prescribed Prednisone which is a steroid generally used during lupus flares. He told me to use it for six weeks and then come back for a follow-up. The medication started working almost instantly. Within two days, the fever was gone.

Unfortunately, the improvements were not to last. On September 8, the first day of Kindergarten for my son, I had a seizure in the kitchen as I prepared breakfast. My son witnessed my collapse to the floor and ran to get my mother-in-law (whom we live with). She called the ambulance was called as I lay on the kitchen floor in a dazed sort of phase.

They took me to the hospital, ran a CT Scan, MRI, Lumbar Puncture and a series of various blood tests and confirmed that the seizure was most likely caused by lupus which I most certainly had.

It's funny how there was a sense of relief in knowing that I had something and that the fevers weren't arbitrary. Now I am on 15 mg of Prednisone for the lupus flare, on 500 mg of Keppra for the seizure and on hydrochloroquine for the lupus.

I'm back home but there are a number of restrictions on my life which I'm still trying to deal with. For starters, I can't drive because of the seizure. I haven't received the official letter from the Ministry of Transportation yet but it's just a matter of time. Secondly, I have a cold so my ears are blocked almost constantly as long as I'm vertical. I can be lying down or on my belly and my ears are fine. Any time I walk around, they get severely blocked and I can't hear anything. This is really starting to bother me now, almost a week later. Third, I probably won't be able to go back to work anytime soon and will have to apply for long term disability. The sense of complete helplessness is threatening to consume me and this blog appears to be the only way to cope.

I want to have another baby. I had two miscarriages, probably both attributed to the lupus in September 2008 and May 2009. The disease needs to be under control before I can consider conceiving again. I'm not quite sure what "under control" means but I do realise it's going to be a while.

For now, I just have to take it one day at a time. Next steps are getting through Eid, which is on Sunday, and interacting happily with the family. And completing the LTD forms that my employer sent over to me yesterday. Once I get through those, then I have to focus on Camran, my son. I've been sort of mean to him lately. He's just dealing the best way he knows and sometimes that means he doesn't always listen to me and I get frustrated and mad. Unacceptable and I need to work on that.

I think that's enough for now. I'll keep you posted.