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.

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:

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

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

Good Week

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

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

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

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

Follow-up with rheumatologist

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

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

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

Getting more done

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

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

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

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

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

Finding out

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.