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.

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 :)

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.

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. :)

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.

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.

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.