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.
Tuesday, December 22, 2009
Thursday, December 17, 2009
Harder than expected
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.
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.
Monday, December 14, 2009
Returning to Normalcy
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.
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.
Monday, November 30, 2009
Update
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.
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.
Friday, November 20, 2009
Things About My Invisible Illness You May Not Know
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 :)
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 :)
Wednesday, November 18, 2009
So sleepy...
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.
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.
Thursday, November 12, 2009
Taper continues
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. :)
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. :)
Tuesday, November 10, 2009
Update
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.
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.
Saturday, November 7, 2009
Expressing yourself
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.
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.
Sunday, November 1, 2009
Nostalgia
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.
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.
Friday, October 30, 2009
More Tapering
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.
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.
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.
Monday, September 28, 2009
One out of four aint bad
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.
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
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.
Saturday, September 26, 2009
Good Week
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.
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.
Wednesday, September 23, 2009
Follow-up with rheumatologist
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.
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.
Monday, September 21, 2009
Getting more done
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...
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...
Friday, September 18, 2009
Finding out
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.
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.
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