“Both abundance and lack [of abundance] exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend." - Sarah Ban Breathnach

Tuesday, September 28, 2010

The Waiting Game

I was finally able to get my labs done yesterday.  I cut my morning rest short, and I arrived at the lab at 11:40 am.  They close at 12 pm for lunch.  My timing couldn't have been better.  Twenty minutes layer, I was staring at a tray full of vials filled with my blood.  An awful lot of them.

I called my husband, feeling triumphant that I had completed that task.  When I greeted him, he said, "What's wrong?  You sound terrible."  Yep, he's that good.  I guess I didn't sound as triumphant as I felt.  He could tell the ordeal had wiped me out, just by hearing me say, "Hi, babe."

So now I wait.  I wait for my doctor to get back test results that will tell her nothing... and then the test results that will tell me everything.  Am I XMRV positive? Or will I test positive for one of the other viruses they've discovered?  We'll see.  Once I know, I can decide on a course of treatment.  See if I should wait for more science or go for HAART treatment. 

Have I ever mentioned how impatient I am?  Let the torture begin.

Tuesday, September 21, 2010

Baseline, Part II

A note about my list of activities.  Everything on the list is subject to my energy envelope.  I find that I fill most of my days with low to moderate energy activities.  But even on my best energy day, I can only tolerate up to eight moderate energy activities.  If I add any of the higher energy activities, that number plunges dramatically. 

Sometimes, I'll piggy-back high energy activities.  I tolerate two high energy activities in one day better than I tolerate two high energy activities in separate days, especially if it's the next day.  It's like serving my sentences concurrently rather than consecutively.

I have pain in my hips and neck always.  Sometimes I have pain in my back.  I get mild headaches a coupleof times a week.  I get a substantial headache about once a month.  My current level of pain is a steady three.  On my worst days, it bumps up to a five.  On a good day, for example right after my massage, it drops to a two.

I'm not quite sure how to quantify brain fog.  My memory is completely unreliable, even if I have it written down on the calendar.  I blurt out the wrong word several times during the course of the day.  I have a hard time finding words, and sometimes my mind just goes completely blank, like a white board wiped clean.  It takes me several uncomfortable seconds (10 or more) to retrieve my thought processes.  Sometimes, if someone reminds me what I was talking about, I can pick up where I left off.  Sometimes it's just gone, and I move on.

Did I leave anything out?

Sunday, September 19, 2010


Things that are very low energy, that I tolerate extremely well with no need for any kind of rest after.
watching TV
playing on the computer
resting (duh)

Things that are moderate energy, that I tolerate well.  I may need a small rest immediately after.
wearing my negative heel exercise shoes for daily activities
doing laundry
up to five minutes tidying my home
picking up my daughter after school (30 minute round trip total)
putting dinner into the crockpot
visit in my home (up to 30 minutes)
visit on the telephone (up to 20 minutes)
reading on the computer

Things that are high energy, that I tolerate fairly well.  I definitely need a rest immediately after and a recuperation day the following day.
visit outside my home (up to 45 minutes)

Things that are high energy, that I barely tolerate.  I need a rest immediately after and several recuperation days.
doctor's visit
going out to dinner
watching my son play water polo (up to one hour, home games only)
any event (up to 30 minutes) such as meetings with teachers or a baby shower

Anything not on the list is too energy intensive with too little benefit for me to include in my life.

Friday, September 17, 2010


It's hard to go to the doctor's and tell her what's wrong.  It's hard to tell anyone what's wrong, because I spend so much of my energy, so much of my waking hours burying the problem, pushing it under the surface, trying to minimize it so I can have a normal life. 

Pain?  Sure, there's pain, but I've trained my mind not to dwell on it.  Yes, I'm so tired my bones and muscles barely function, but I sit at my computer and write, or play games, and I trick myself into thinking that I'm lazy and wasting time, when really, it's the only thing I can do.  I sit on the couch and crochet while watching TV, and I talk with my girls, not acknowledging that I am here because I can't get up, walk over, and stand in front of the stove for 15 minutes cooking dinner.  Or even stand there long enough to pop the freaking corn dogs in the oven.

I nag at my boys, insist they get their jobs done before going outside, pretending I'm just being a good mom teaching them responsibility, when really I'm begging them inside, please, do this, my work, for me with a cheerful heart.  Please, little child, help me, because I am more helpless than you.

How long, my God, my beloved Father?  How will you know when I've suffered enough?  Ho will you know that it's too much for them?  People have lived with this disease for decades, although living is perhaps too strong a word.  How much longer for me?

Monday, September 13, 2010


So, I went to the doctor today.  The last time I had seen her was two and a half years ago.  At that time, we were wading through all the tests to eliminate all other possibilities.  I wouldn't exactly say that we're back to square one, but it's probably no more than square three.

So, I need to get some labs done.  Look to see if I have lupus, Lyme, mono AGAIN.  She wouldn't prescribe Klonopin for me just yet.  She also didn't seem to be jumping up and down about the LDN.  I asked if she'd heard about the XMRV studies, and she said they were "inconclusive."  I told her there were people out here that have tested positive for XMRV and started taking HAART therapy and have been getting better.  She does support me getting tested for XMRV (I mean, what is she going to say, I'm paying for it), and she says she'll keep an open mind if I come back positive.  She would want me to consult with an ID first, just to cover her back if she does go out on a limb and prescribe the HAART meds for me.

What slight glimmer of hope did she offer me in the interim?  She gave me samples of Cymbalta.  She said many of her patients have shown significant improvement on it.  I told her that the pain is minimal for me, that the fatigue is a much greater concern.  Still, she thinks I should give it a try.  I didn't remember in the office that Cymbalta is an anti-depressive; for some reason, I was thinking it was a sleep aid.  Probably because the commercials are so similar.  I did not tolerate antidepressants well in the past; they increased my insomnia, made me feel really wired.  And I am NOT giving up my sex life.  It's the only part of LIFE that I really have left, and I'm not going to jeopardize it.  If there are any sexual side effects, we're done.

As you can see, I'm not thrilled with how things went today.  Add to it that my appointment took two and a half hours, and by the time I got in to see the doctor, I was a trembling, emotional mess.  Totally screwed up today, and I know I'll be reaping the payback tomorrow.

Still... the most important thing that happened today is that we are moving forward with the XMRV testing.  Klonopin and LDN are for interim relief, in my opinion.  I believe the HAART treatment is what will really be helpful in returning my life back to me. 

Sunday, September 5, 2010

Faith and Hope

Sunday is a time of reflecting and renewal for me.  I loved this message, and I thought I would share it to all who embrace their challenges with faith.

Wednesday, September 1, 2010

First Stop

This is what I'm going to do when I get better: