Archive | August, 2010

Sweet Gherkins! I am a Ninja of my Craft!

20 Aug

This has to be one of the coolest features- not just because it is about my art, but because well, as some of you may be aware of, I was a bit of an alternative sort of Ninja back in a different life time.  But more on that another time….I’m in a bit of a rush as the witching hour is upon us and nobody has had a complete meltdown just yet but I think I must go spread some merriment and delegate.

Check it out!  Fantastic blog!

the :ninja blogs!: Series – Ninjas of their Crafts.

xo

Bek

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A Letter to Patients With Chronic Disease…

18 Aug

I think this blog entry, from distractible.org, offers an interesting perspective… Food for thought for those of us living with chronic illness and food for thought to everyone in the medical profession who may come in contact with PEOPLE with chronic illness.  I do suggest that folks who think that those of us with chronic illness are just negative and whiny, especially about the medical profession, read the comments after the letter from Dr. Rob.

Be sure to add your comment there, or here. That is totally up to you, my dearies :-)

Here’s the link:

A Letter to Patients With Chronic Disease.

xo

Bek

The Sun Will Come Out Tomorrow.

9 Aug

Hello!

Here I am!  No really, I’m here!  Stop rubbing your eyes. This is not a mirage. I am actually updating my blog with a brand spankin’ new entry.

So, how has everyone been?

We are coming up on the end of the summer, or at least the end of summer vacation for those of us with kids.  In our little nook of Florida, school actually started today for some counties, and starts for ours next Monday.

My last blog entry involved trying to raise funds to send Alex to a special Aspie camp in Ohio.  An extra huge Thank You to those generous folks who contributed!   Unfortunately, we had made plans based on my first few weeks of methotrexate therapy, when I was feeling alive and awake for the first time in years.  I swear, I though the one or two days of fatigue would be manageable.

But things changed as we upped my dosage.

And the fatigue started to spread as some of the joint pain started to dissipate.

And it spread over me like molasses, gripping my feet then slowly weighing the rest of me down.

I started to imagine the methotrexate pills as Liliputian military lashing Gulliver to the ground.

And at first the ties on my body and brain would loosen after a few days.  I’d have 2 days of exhaustion, sleeping around the clock.  I have not slept so deep since before I carried Alex in my belly, and certainly not in the 7 years since. I am his guardian, his advocate.  I am hypersensitive to sound and smell.  I am always alert, just in case. Because I know it would take nothing short of a car alarm blaring an inch from our bed to wake the baldman up.  So I am in bed, muscles tense, dreams shut out, senses alert.

But methotrexate sinks me into this strange isolation tank as I start to nod off and for two out of seven days the world carries on as I dream vividly, and soak my clothes and the bed sheets with pouring sweat, and wake only in the evening, to recharge with pedialyte and whatever I think I may be able to keep down before resuming this odd sleep, and the handful of medications that keep me alive.

Then I was having a couple of days of fatigue, but not sleep-coma fatigue- more like sleeping away the morning, waking up around noon, and then actually functioning for a couple of hours.

Then we upped the dosage, twice, and each additional little pill sucked more life from me, even though the labs showed that it was also cooling the inflammation in my body and my markers dropped to within normal ranges.  I have a good doctor though, who sees his patients fully, and his thought was that as I wasn’t feeling better then we must continue looking for answers and testing treatments, as numbers mean nothing when you feel like crap.

I slept 3 days of every 7, then 3.5 of every 7, until finally, today, I realized that I had slept 5 out of seven days, and felt like I could sleep the next 24-48 and still be exhausted.  My body started hurting from lack of use instead of swollen and misshapen joints.   My muscles hurt as though I was running a marathon everyday, as my meds made me contract every one and hold the tension, even while sleeping.  Everything felt so pulled that just taking a single step, or sitting up at the edge of the bed, threatened to break me.

I weighed the pros, and the cons, and realized that I had traded an existence that had been modified to fit around the pain and fatigue of rheumatoid arthritis for one that was built around the pain and fatigue of the treatments for rheumatoid arthritis.

I had panic rising up in my chest last night, that I don’t want it anymore.  The idea of Thursday coming up fast and the idea of taking those pills again filled me with dread, I am feeling so cornered, so trapped.

So I called the doctor.

And I am stopping methotrexate now. I will not take my dose this week for the first time since the beginning of May.  I will continue to take the Plaquenil and the tiny doses of Prednisone.  In the beginning of September I will have my next labs and appointment with my Rheumatologist and we will work from there.

For me, this treatment was worse than the pain and stiffness, and the fevers inched higher on the meds than they did off of them.  It didn’t matter anymore that my joints felt better than back in May, because I can’t use them if I am sleeping this much…  This experience for me has been like getting the flu every week- I’m either coming down with it, in the thick of it, or getting over it.  The getting over it and coming down with it parts keep getting smaller, so that I feel like I have a five minute stopover and my next flight is from another concourse.  And Alex needs me.  And not just during those little glimpses of OK.

So I am done.  Another medication that I had a crap reaction to.   I’m allergic to most of the meds they use to treat inflammation, at least the ones with a mellow side effect profile. I’m giving my body one week to sleep the rest of the toxic soup away and then I’m going to do some hard planning. Time for balance.

Oh broken body, please accept something without protest.

But it can’t do that, as what kind of battle strategy would that be.  Auto-immune disease is a bitch.  It feels strange accepting and caring for a busted up body that keeps trying to derail all progress.

I must be stealthy and ninja like. I must be ruthless, ferocious.

Game on, body. GAME ON.

Xo

Bek

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