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.
Friday, October 30, 2009
Monday, October 26, 2009
New Blog
I finally started my romance novel blog. Here's the link. You're welcome to visit anythime.
http://awriterslife-sadaf.blogspot.com/
http://awriterslife-sadaf.blogspot.com/
Wednesday, October 21, 2009
2nd EEG and Other Stories
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.
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.
Friday, October 16, 2009
Day 2 of Taper
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.
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.
Wednesday, October 14, 2009
Good News
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.
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.
Monday, October 12, 2009
Thanksgiving weekend update
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.
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.
Friday, October 9, 2009
Mystery Shopping
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!
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!
Tuesday, October 6, 2009
Follow-up with Neurologist
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.
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.
Saturday, October 3, 2009
Shout out
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
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.
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.
Thursday, October 1, 2009
Insomnia and Ideas
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.
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.
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