Curry, Cauliflower, Cranberries & The Golden Rule

It’s the first really cold night of the season and I’m keeping myself warm with an oven full of curried cauliflower with cranberries.  Who knew that particular C-combination would be sooo delicious?  I popped it in the oven late tonight to pack for Monday’s lunch and it’s been a challenge to hold back from eating it all! Check out Choosing Raw’s super easy recipe here.

The change in weather and the upcoming Christmas season have unleashed the hacking and flu-ridden, bone chilling, Raynaud’s inducing temperatures, and tempting seasonal goodies and drinks (the kinds that are more likely to encourage Lupus than keep it at bay). I need to be careful, especially with my white blood cell count dipping back down to 1.5. This time around, my rheumatologist seems unconcerned, so much so that there’s been no talk of increasing my meds. I’m pleased with this of course, but it has left me very confused.  Why so laid back the second time and so panicked the first? I’m not sure how concerned I should be, if at all!  I will email my rheumatology nurse this week, but in the meantime, I’ll follow what I’ve learned is the golden rule when it comes to these matters: When in doubt, REST.

So, a peaceful rest to you, my friends, and a happy, cozy week ahead.  :)

Another Day, Another Blood Test

“My veins are really small, so you will probably have to try both arms,” I suggested as I wriggled out of my winter jacket.  Snapping on his gloves, the lab tech retorted,

“Why do I have to?”

I could feel my face scrunch in confusion.  Is that supposed to be a joke, buddy?  After a moment, he chortled out a laugh in confirmation.  He started to prod my left arm in an attempt to coerce a useable vein out of hiding.  Unsuccessful, he took his glove off and tried again.  I stared at his bear finger.  Was it really doing a better job than it’s gloved counterpart?

“You can release your fist now,” He said as I watched the red flow into the first of five thin, long tubes.  My fist was, in fact, released (I think I know the drill by now), but I had left my fingers curled, so that the tips were hidden from view.  It was very cold that day and the short run from the parkade had my Raynaud’s out in full force.  I had been inside for at least fifteen minutes, but I could see that three of my fingers were still yellow, nearly glowing against the purple and red of my slowly recovering hand.  Reluctantly, I fully extended my fingers.

“Oh my God!  What happened to your hand!”

Although fully expected, I felt a bit put out by this reaction. For a moment, I was angry:

Hellooo, this is a frickin’ hospital blood lab, buddy.  People come here because there is something wrong with them, so no, nothing has “happened” to my hand, it’s just the way it is because I’m sick.  You know, SICK, like everyone else around here.  Get it??

Feeling silly and mean for my inner tantrum, I tried to murmur an explanation.  “Oh, it’s because I have Lupus, which gives me Raynaud’s and…”  He nodded politely and didn’t say another word until he handed me the urine sample bottle I needed to fill.  I noticed that we both avoided eye contact.  My yellow hand tingled as I took the bottle from him.  Oh Raynaud’s, making things a bit awkward today, aren’t you?

Generally, Raynaud’s doesn’t bother me very much.  I’m used to the pain now, I know how to warm up, how long it takes, what to expect, and it’s easy to hide (well, except during blood tests).  I tried taking pills for it back in the day when it just started and I was being a wuss about it, but they made me sleepy and I couldn’t drive when I was on it, so I sucked it up and learned to live with it.  I find it interesting, actually. Because of the colour changes, I have the ability to see the healing process of my hands and feet.  It’s like I’m see through.  That’s kind of cool, right?

Okay, so with all this blood test talk coming up again, I suppose I should give you a long overdue “lupie status update:”

I’m back to weaning off Evil P again. I’ve been on 2.5 mg every second day for a about a month and this week, I started to take it every third day.  In two to three weeks, I will take it every fourth and so on.  After all the decreased white blood cell nonsense, Dr. H has taken Big M off my medication list.  It’s actually official, people:  Big M is not for me.  She wants to see if my lupus can remain stable on just plaquenil before trying another medication.  I was shocked.  Is it really possible that my lupus is stable enough to just be on plaquenil again?  It feels hard to believe and I won’t get my hopes up too high, but it feels good to know that I’ve gone from 14 pills a day (and four rounds of chemo) to the possibility of only two in a year and four months.  It’s been a long road and I know it’s not over yet, but I feel rewarded, even if it’s just a possibility.  My little Raynaud’s story was from my monthly blood test two days ago, so we’ll see what my body has to say about this whole thing…

And so, I prepare for another chilly day, where I will most likely be tucking my little, yellow hands in my sleeve while I watch my keepers chat over lunch.  And if that is, in fact, all there is on the lupie menu today, then life is pretty damn good.

 

Today is for Lupus

The rain forces my chin towards my chest as I tiptoe across the parking lot towards my car.  Puddles lie camouflaged on the drenched concrete.  I splash around like an awkard duckling, an unwilling playmate to the onslaught of rain.  I’m slightly annoyed, but not enough to run.  My muscles tense as the colour drains from of my fingertips and toes.

My head hurts.  My thoughts hurt.  I need a nap.

Today has “Lupus” written all over it.  It’s “World Lupus Day.”  It’s also “Lupus Awareness Month” in the U.S.  The slightly irritated part of me thinks that I, along with everyone else in the world, could care less.  The usually optimistic part of me scolds me for being such a grump.

So, what does a Lupie girl do on a day like today?  How do I recognize and acknowledge the millions of people who live with me on this mad, crazy, Lupie world?  I did it by doing the best and sometimes, the hardest thing for any Lupie to do:  I listened to my body.

I took a nap.

http://www.worldlupusday.org/

Beam me up, Dermy

The door opens and my eyes drift from the paperback in my hand down to the black shoes gliding past my toes.   I tuck Jane Austen’s Pride & Prejudice in the open gap of my shoulder bag and adjust myself to face the newest specialist on Elena’s roster of Lupus warriors.  I shook my dermatologist’s hand and smiled uncontrollably.  

My skin specialist was Captain Jean-Luc Picard.  

Okay, so obviously he wasn’t actually Jean-Luc Picard and the dermatology clinic was hardly the Starship Enterprise, but his resemblance in voice (yes, he had the accent too) and manner made our 45 minutes together extremely amusing.

I was referred to Dr. Picard (let’s call him Dr. Picard, shall we?) when I went to my GP about a year ago with tiny sores on the tips of my fingers.  They looked like mini, fleshy mine fields that stung with every touch.  I hid them very well, as I hid all my painful secrets and as always, only one Keeper was privy to the sight.  He had encouraged me to go to my GP after they failed to heal in the upcoming weeks.  To make things even more pleasing, my nails were discoloured and grew out in a distorted curve.  My chest and joint inflammation were also at an all time high, affecting my ability to breathe and giving me a slight limp.  We were going through a severe cold snap at the time and my Raynaud’s had my fingers and toes white and bloodless for the majority of my days.  My butterfly rash was constant, flashing the red alert as it sat angrily atop my cheeks.  I had seen better days to say the least.  

Months later, when the referral came through, the sores had finally healed up but it had taken months to do so.  My appointment with him was supposed to have happened in August, but I was busy confusing the doctors with my brain inflammation shenanigans.  My nails improved as well, but I noticed when I checked out of the hospital, portions of my nails were black and discoloured.  That disappeared too, with the exception of one baby toe nail.  I was feeling odd about going to see the dermatologist after so much time had passed, but I decided to go anyway.  

Dr. Picard held my eyes for the duration of our conversation, gesturing solemnly (yet quite pleasantly) during his detailed (and at times, perhaps overly so) explanation of why the skin on the tips of my fingers had decided to explode.  It took great effort to stay connected to what he was saying as I found myself drifting off on the lilt of his British accent, thinking of the great fun I would have blogging about him when I got home.  I watched him nod gravely as I explained my symptoms.  

“It’s because of the Lupus, you see,”  Dr. Picard stated as he sat scribbling on my file.   Oh… right.  Of course.  Somehow a part me thought it had to be something else.  It can’t ALL be Lupus, can it?  There must be something it CAN’T do.

“The Raynaud’s restricts the blood to your fingertips and when it is particularly bad for long stretches, sores and malformed or discoloured fingernails result.”  How absurd it was to watch this serious, sincere clone of a starship captain, explain in detail the preventative measures that can be taken from the kinds of lotions, cleansers, brand of thermal sock and boot, even price points and the difference between no name and brand name.  At one point, he told me to put on my jacket, telling me to feel free to put on my mittens – “Don’t be embarrassed, I know how it is.”  I almost laughed.  Not because I didn’t believe him, but because it felt so odd to speak of my Raynaud’s pain as a topic that was worthy of lengthy discussion and of enough concern that he wanted to have my follow-up appointment in the hot summer month of July so that my hands and toes would not get cold as he examined me.  

I asked about my increased risk of cancer, which is quoted on several of the drugs I am/have/will take (Chemo (Cyclophosphomide), Imuran, Methyltrexate) and if I should be checking the moles on my body.  A lengthy discussion ensued on how and what to check for, tips on taking pictures of moles, to an assurance that I would not have to take off my underwear for a full body examination.  Oh, and while waiting in the examination room, to please keep my jacket on over my gown and please, don’t take off my socks and shoes until he comes in.  It was of the utmost importance that I keep warm until the very last second.  My hands and feet were giddy from all the attention. 

As I stumble around on this strange voyage of healing and discovery, I am finding that a good, kind, caring doctor does more for me than explain the science of my disease, but gives within their sincere and concerned demeanour a validation for all the pain I have felt these past eight years.  It makes it all worthwhile to finally have someone say that it was REAL, that I didn’t over-exaggerate how much it hurt, and that HOLY SHIT, someone really wants me to know that my life doesn’t have to be that way, that I can actually have a life of real quality.

 Dr. Picard had decoded the mystery of the exploding fingertips and I thanked him accordingly for all the time and info he had given me.  I imagine that the real Captain Picard, in response to the possibility of living a quality “Lupus Life,” would say:

“Make it so.”