Saturday, September 17, 2011

New and old pains

First off, I have a confession to make... I've been cheating on this blog.  There's another blog in my life.  I realised after much consideration and thought that I'd like to blog about more than just lupus.  Which is the main reason I haven't posted on here is almost a month.

There have been lupus developments.  As you know, after I complained to my rheumy about this persistent rash, he increased my Plaquenil dosage to 400 mg 7 days a week (from 5 days a week).  Plaquenil's effects aren't noticeable immediately.  It does take anywhere from a month or more to see anything change.  So, initially, the rash stayed.  But slowly, after about a month, the rash started subsiding.  Within 6 weeks it was gone.  I was meant to go in for a follow-up appointment on Aug 18, but I didn't go for my blood test on time and the doctor wanted blood work results when he saw me.

With the rash gone, and with renewed energy, I thought I was over the hump.  Then something interesting started happening.  I'm not quite sure when it started (another reason I really should blog more often), but I started feeling achy when I got out of bed.  Kind of like the achy feeling you get when you have the flu.  Sort of a whole body ache and not a localized pain.  I let it go for a while, thinking it was the AC that was causing my joints to stiffen but the ache hasn't gone away.

I finally ended up getting my blood test on Sep 8 and have an appointment with my rheumy on Sep 27.  I'll be sure to bring this up with him.  I've never had joint pain before so I have no idea what it's supposed to feel like.  I always thought it would be a sharp pain, not a dull ache... but I really don't know.  Also, while I'm no longer as fatigued as I was a month ago, I can feel my stress levels rising.  A lot of it has to do with juggling Camran's school requirements with the baby and establishing a routine for both of them.  I'm hoping the pressure and stress ease within a couple weeks.

I'll keep you posted on this new development.

On another note, I finally went to see my family doctor.  I needed a new prescription for Keppra and I took the opportunity to discuss the need to continue with this medication.  I haven't had a seizure or any related seizure activity in over 2 years.  While the medication isn't hindering my lifestyle in any way, it does have an impact on my budget.  The medication costs me $20 a month and that's WITH my insurance paying for 80% of it.  I wouldn't be sorry to see it go.  On the other hand, I don't want to risk another seizure and risk having my driver's license revoked again.  I don't think I could bear another year of that.  Since Dr. Licorish is getting increasingly difficult to get a hold of, my family doctor has referred me to another neurologist.  Still waiting for a call from his/her office for an appointment.  I'll keep you posted on this one too.

Friday, August 19, 2011

There's more to life than Lupus

I was re-reading my last post and realised that it was a huge shift from my usual banter.  I was about to delete the post and subsequent pages but then I stopped.  Let's face it, my life isn't just about Lupus anymore.  I have so many things that make up my life.  Lupus, yes, but also other things such as parenting, money matters, spirituality, marriage, housekeeping, family relations, work and work-life balance.  It's been a while since I've written only about lupus so you may have already sensed my deviation but now I'm making it official.  I will not change the name of the blog because it all started with Lupus and that's one constant in my life that won't go away.  I'm also keeping my Four Principals because I quite like them.

My last post centered around money.  I like budgeting, saving up for something big, juggling life's little surprises with limited resources and seeing my cash flow stay in the positive through thick and thin.  As you know, I paid off all my debt at the beginning of this year with the intention of NEVER going down that path again.  We still use our credit cards but we make sure we pay them off in full every month, at the same time earning Air Miles (more about that in another post).  So far, this has been fine but, let's face it, I'm on maternity leave and currently bring home 55% of what I normally would.  We don't have any extra money for nice-to-haves.  For example, our towel warmer (and drier in one) died.  We had bought it when we moved into this house, three and a half years ago, so it was expected to die soon enough but a new towel warmer (which, let's face it, is a luxury item) costs $300.  I don't have un-earmarked $300 lying around.  So, we're going to make do with drying towels the good old fashioned way: on a hook beside the shower.  *Gasp* not on a hook beside the shower!!!  The towel warmer was wonderful especially during our long Canadian winters but it's a luxury item we can do without for a few months.  Maybe in the near future we will purchase a new one but for now, while I'm on maternity leave, we will manage without it.

There are other things that we make do without but sometimes things work out for the better.  I love chocolate cake!!  Absolutely just love it.  My sister and I used to get a large McCain's chocolate cake and finish it in one afternoon.  Glorious days when neither of us had to worry about pesky things like weight gain or tummy aches or diarrhea.  Until recently, when the mood struck, I would go to the 24-hour grocery store nearby and buy their clearance chocolate cakes for $12.99.  Lovely double chocolate fudge cakes that tasted even yummier after nuking for 12 seconds.  Alas, those days couldn't last forever.  When you're income gets slashed, you cut out little luxuries.  For me, it was the chocolate cakes.  That didn't mean the cravings went away.  I just got smarter about what I wanted.  I discovered cake mix!  So, now, I get a box of devil's food cake mix for $1.50 and whipped frosting ($4.60) if I'm feeling really dangerous and I get a full 2-layer 8-inch cake for $6 instead of $13.  Most times, I just eat the chocolate cake as is, nuked for 7 seconds - yummy!!!  Total cost $1.50 and total time 35 minutes.

There's a wonderful sense of accomplishment when you reduce spending and learn to be content with the decision.  I love my cake mixes and even when I go back to work, I'll continue to bake, frost and decorate my own cakes.  Today was the first day we used the "hook beside the shower".  The towel was dry by lunch time and I folded it and put it in a neat pile beside the tub.  It worked!

Thursday, July 21, 2011

Let's talk about lupus

I had mentioned in an earlier post that pre-lupus rash returned on my face, neck and upper chest area around early May.  Since then, the rash hasn't actually gone away completely.  I started taking Prednisone for a while and it did lessen considerably during that time but promptly returned after I tapered the steroids.

Finally, I thought it would be best to speak to my rhumatologist about this.  I called him on Tuesday this week and asked if he could check my bloodwork from June 27th for any abnormalities.  His office called back and said that there wasn't anything glaring but the doctor wanted to see me anyway.  So, I went over to the office yesterday and we went through my bloodwork, line by line.  Turns out that my double stranded DNA numbers were elevated by 100 points compared to December 2010.  All other counts (hemoglobin, white blood cell, iron) were all better than December's numbers.  Judging from the rash and my reduced energy levels, my doctor recommended that I increase my Plaquenil dose from 5 days a week to 7 days a week.  He suggested I try that until August 18th and, if that doesn't help or if my condition worsens, then to start 10mg of Prednisone.

That suited me just fine but it wasn't easy.  I've spoken about being authoritative before but I've never had to act upon it the way I had to yesterday.  I had to keep going back to the fact that the rash has been there since May and has not gone down.  I had to describe my lack of energy in the mornings and absolute "need" to go down for a nap in the afternoons.  I had to ask him to go through the blood test results line by line.  In other words, I had to take charge of my own condition.  I'm not saying anything against my doctor.  I totally understand that he's erring on the side of caution when it comes to dispensing steroids which are very harsh drugs with serious side effects.  Still, I had to practically force him to do something.  We've sat back and waited in the past and it has led to serious flares.  This time, I cannot take that chance.  Not with an infant who's totally dependent on me.

Personally, I don't think the increased Plaquenil dose will make a difference.  Still, we'll see what happens.  I'll keep you posted.