Schooled

Answer:  Christmas, the time change, and back-to-school.
Question:  What are "Things That Kick My Butt."

Oh, I mourn the end of summer.  I'm one of those moms who enjoys having their kids around.  Do you know that I did not hear the words "I'm bored" once?  Lazy days spent together, working on a puzzle or lounging in the pool.  It was delightful!

Then comes the mad dash to get haircuts, school supplies, and new clothes.  Worry keeps me up the night before, and then the dreaded alarm clock rudely demands I wake before my body tells me it's time.  Of course, I can't get back to sleep after, either.  Disrupted sleep and stress are taking their toll.  I'm dragging.  My energy window has caved in, and my activity threshold is almost non-existent. 

So once again, I must rein in my enthusiasm.  Be patient, and nurse my body through these changes.  Patience, bah.  I've been excited about testing my wings.  I want to begin small excursions out of the house.  Just half an hour, say to the park or just sitting at the mall, once a week.  It looks like that will have to wait a little bit longer.  Once again, this disease reminds me who's really in control here.

Patterns

As I'm trying to navigate the latest changes in my health, I look for patterns that help me manage my time and energy the best I can.  So here's what I have figured out right now.

I have an energy window from about 10 am to 7 pm where I feel pretty good.  12 to 3 pm are my very best hours.  I try to schedule most of my activities for this magic window of time.

In addition, I'm finding that I have an activity threshold.  This is where I'm learning.  I can tolerate an activity for a certain period of time.  My body is very clear in warning me when I start to cross that threshold.  The first thing I notice is that my cognition begins to wane.  Next, my eyes begin to twitch, and the more stress, the more I twitch.  Finally, if I've really pushed it, then I have muscle weakness and shaking.

My goal these days is to discover my activity threshold.  In my excitement over my new-found energy, I have a tendency to try something and ignore my body's signals that I'm overdoing it.  Although I bounce back and recuperate faster than I did before, I'm sure that the bouncing back and forth can't be good for me.  I can only imagine that staying within my activity threshold would help me heal even faster.

XMRV Treatment: Five Months

I have been on ARVs (anti-retrovirals) for five months now, and I have experienced no side effects.  I continue to see a steady improvement in my health.  I would say that I have gone from about 20-25% at my lowest in February to about 35% now.

The greatest improvement has been in the symptom of fatigue.  It used to weigh on me like a suit of weights, making every movement and activity feel so much more difficult than normal.  The lifting is like the sun breaking through the fog, and it has had a huge impact on my overall mood.  It's been better than any anti-depressant I've ever tried.

My pain has been lessening as well.  It's hard to tell if my cognition is improving.  Sometimes I think it is, but it is the first thing to go when I overdo it.

One challenge I face as I start feeling a little better is which activity to add to my life.  There's a whole list of things that I want to do, that I should do, that I once dreamed of doing.  I haven't had to prioritize in a long time.  Everything was off the table before, and I chose my activities based solely on necessity and urgency. 

Suddenly, I have choices in front of me.  And each day I seem to choose a different combination based on my whims.  One day, I spent a little individual time with each of my kids.  One day, I went to a water polo tournament (about two hours).  Another, I had friends over to swim.  And another, I went to a party at a friends house.  See?  One or two "big" days a week, and the rest of the time I'm recovering or preparing for it.  I'm not sure I'm adjusting to my new healthier me very well.

I feel like I have found the perfect regimen for me.  I have the ARVs, which I believe are stopping the disease.  I feel like my body is broken, and that the essential oils and supplements that I'm taking are helping to repair it.  And I am able to exercise in the pool most days, which I feel is strengthening my body.

I will write a new post soon about the essential oils I'm taking, because I love them.  It's the first time that I've found something that helps with my symptoms.

XMRV Treatment: Four Months

I continue a slow but steady improvement with my health.  When I went to my last doctor's appointment, I told him I felt like I was getting better.  I said I'm able to tolerate social visits better, and that I was more mobile around the house.  He said that was nice, but he was hoping I'd be able to give him something a little more quantifiable.

Well, here's a quantifiable improvement for you:  I lost a couple of pounds!  I haven't changed my eating habits.  It's been due to an increase in activity.

I have been taking advantage of having a pool in my backyard.  I try to go in every day, now that the weather is so hot.  I'm sure that being out in the sun and getting a nice Vitamin D fix is helpful.  I am gentle in the water.  I walk the width of the pool a few times, and I float on my back.  I can feel the muscles in my body stretching in new ways.  It feels heavenly.  I do a couple, just a few, water calisthenics.  And on a good day, I'll take a few strokes across the pool.  Seriously, three strokes will get me to the other side.  Again, it's movement in a new way, and I'm always careful to not get my heart rate racing.

The daily exercise has been helpful for my sleep, too.  I've been getting a good nine hours a night.  I feel more energetic during the day, less dragging.  I still rest twice a day, but I have to force myself to stay down at least 20 minutes in the morning and half an hour in the afternoon.  Rarely am I tired enough to rest a full hour.

I also feel like my immune system is strengthening, just a little bit.  This is kind of scary.  I know I've had infections floating around my body undetected for some time; now, my body is starting to fight back, so I'm getting more "sick" symptoms like mucus and fever.  I tell myself this is a good thing, and for proof, I have more energy than I did before my "sick" symptoms.

I'm still not venturing out of my house much.  With summer vacation, there aren't too many reasons to.  I content myself with enjoying the improvements on this level without worrying about kicking it up a notch just yet.

I'm enjoying my essential oils.  I feel like they are helpful, especially with immune support and orthostatic intolerance support.  Who knows for sure, right?  The digestive aid is definitely helping, though.  I really like the new supplements I'm using, too.  I feel like they help me bounce back from overexertion better than I had before.

Meanwhile, the controversy over XMRV continues.  Personally, I am waiting for the Lipkin study that should be out by the end of the year.  I feel that if WPI has made a mistake, he'll be able to explain how instead of just saying, "Well, I couldn't find XMRV using my fast, cheap methods, so it must not exist."  WPI continues to be confident that true replication studies will support their findings.  In the meantime, I'm taking ARV treatment, and I'm getting better.  That's enough for now.

Smelly Politics

I have been closely following the news regarding various negative XMRV studies and the responses from WPI.  I have yet to see a study that truly challenges Dr. Mitkovitz' findings or replicates her study.  I have heard of some interesting and plausible conspiracy theories.  It's all about money, greed, and power, and we, the sufferers of CFS, are being trampled under their feet.

There are several studies underway that should shed light on the subject one way or the other.  But Science magazine wants to undercut all that and jump to an early and ridiculous conclusion by requesting that Dr. Mitkovitz retract her paper.  It is unconscionable.  I have to wonder why they would do this now.  We've been told for almost two years now to let the science work it out.  Why aren't they willing to let the science work it out?

I encourage you to sign this petition that tells Science to retract their EEC.  http://www.change.org/petitions/an-open-letter-to-the-editors-of-science-2

Improvements

After 2 1/2 months of XMRV treatment, I definitely feel better.  My need for rest has diminished quite a bit.  I still force myself to lie down twice a day, but I'm often antsy and peeking at the clock around the 20-minute marker.  I am sleeping less.  I don't seem to require 10 hours of sleep in order to feel good.  Often, I will wake at 6 am after 7-8 hours sleep, and I'll be unable to doze again. 

I feel uplifted, happy, almost exhilarated.  I find myself smiling a lot more.  It's like a weight, a fog has lifted from me.

I still have to be careful with activity.  I shopped WalMart the week before Easter.  It was way too big an outing for me; I should have started with something small, like a trip to the corner grocery store.  But I find that I'm chomping at the bit, eager to push the envelope just a little bit to see what happens.  Did I crash?  Um, yes, yes I did.  It was a big one, but it only lasted one day.  A crash like that would have normally taken me at least a week to recover from, if I indeed ever fully recovered.

I'm doing more around the house.  Not that much more, but noticeably.  It's interesting how I had unconsciously been conserving energy, calculating the most energy-efficient way to do anything.  I watched my husband put on his shoes one morning.  He picked one up, untied it, set it down, did the same with the other shoe.  Then he picked up the first shoe, put it on, and put on the other shoe.  I was amazed that he didn't realize that he was wasting so much energy by putting the shoe down and picking it up again.  I never would have done that!  Likewise, I always made a beeline for the nearest chair whenever I entered the room.  If the phone rang, I'd wait until one of the children handed it to me.

Yet, twice this week -- twice! -- I found myself pacing while talking on the phone.

The other thing that I've noticed is that I am tolerating social interactions much better. I've been out to dinner with my husband twice without any negative repercussions.  My sister-in-law dropped by and stayed a couple of hours.  I was exhausted, but it didn't cause a crash.  I can handle a drop-in visitor for about an hour now.  Talking on the phone is still challenging; I'm good for about 45 minutes of that.

Meanwhile, I'm enjoying creative pursuits with my writing, and I've started using essential oils for symptom relief.  I haven't been using them long enough to report anything, but so far I've found a couple that seem promising for pain and stomach problems.

Happy Mother's Day to all you Moms out there! 

XMRV Treatment: Month Two

So sorry I haven't posted lately.  I've been occupied by my writing (imagine that, focusing on real life and not my illness).  In particular, I've been participating in the A to Z blog challenge for the month of April on my writing blog.  It's been a lot of fun, but I find that it takes a lot out of me.

After two months of treatment, I asked my husband if he could see any differences at all.  He said there are hints.  I agree.

I notice that I am having more good days.  By good days, I mean that I feel lighter, happier, in a good mood, like a fog has lifted from me.  I have a little more energy, and I tend to do a little bit more spontaneously -- things like wash my sink, clear the table, empty another box (still haven't finished unpacking!).  It's not a big difference in my activity level, but it's definitely noticeable.

Unfortunately, that buzz of energy also keeps me up at night.  I have a hard time falling asleep, and when I do, it is filled with vivid dreams and wakings.  Which leaves me exhausted the next day, and it takes  several days to normalize again.  It's a cruel cycle.

Another thing that I've noticed is how horribly deconditioned I am after years of declining activity.  I can't help but feel that if I were in better shape, I'd be able to take advantage of my good days and do more with them.  It's a nasty catch-22.  If I push my activity level, I feel tired and crappy.  If I don't, I can't make any progress in my health. 

I've chosen to push myself a little bit.  I am doing gentle yoga in the mornings.  I've bought a pedometer.  I walk an average of merely 1,000 steps a day.  Before I got sick, it was around 8,000.  I try to walk just a little extra.  I'd like to get it up to an average of 2,000 steps a day.  For now, anything over 1,000 is a victory.

Many people have asked me what specific medications I am taking.  I don't feel like I can give that information right now.  It would be irresponsible.  I don't want to appear that I'm recommending this course of treatment for anyone.  I don't know if it works, and even if it does, I can't assume it will be right for everyone.  If you are as determined as I was that you would like to try antiretroviral treatment, then I recommend you do your homework, find which drugs target XMRV, and decide with your doctor which treatment is best for you.

XMRV Treatment: One Month

Stupid Daylight Savings Time.  I was all set to write this wonderful, optimistic post about how good I'd been feeling lately, then WHAMO!  DST + monthly hormonal revolt = crash and feeling crappy.

Prior to the crash, I noticed several very good days.  And I mean VERY good.  There were days where I woke up refreshed and smiling.  I do not often wake up refreshed, and I almost never wake up smiling.  Although my functionality didn't seem dramatically improved, I felt like I was improving.

With CFS, I am aware of the energy cost of every movement.  I notice the effort it takes to raise my hands to wash my hair.  I notice the effort of standing while getting dressed during the day.  I notice the effort to write a journal page.  I notice the effort of talking on the phone for 10 minutes to my husband.  CFS is like a heavy fog that settles into my bones, and I am aware of it all the time.

But during those good days, it was like a lifting of the fog, or maybe more like a lightening.  Instead of feeling like I was walking through sand, it felt like I was walking through glue.  Yes, everything was still an effort, but so much less of an effort than it had been.  I felt lighter, like gravity had lessened its pull on me.  It was wonderful!  And I was ready to declare yes, I am getting better!

And then we had the good ol' time change switcheroo, and a whole week has gone by with no good days.  My sleep is back to being disrupted and unrefreshing.  My schedule is all messed up, and my internal clock is not adjusting as quickly as I'd like.  I'm staying up too late because I'm just not sleepy yet, dang it!  And then I'm sleeping 10 hours and still waking up sluggish.  Like I mentioned, my monthly period always exacerbates my symptoms, and having it coincide exactly with the time change has been a double whammy. 

I'm hoping this week brings improvement, that my body will adjust to the time change and let me sleep well once again.  I'm hoping I'm able to coax a few good days back. 

Other things I've noticed:  I don't have any side effects with the medication at all.  I'm tolerating social visits much better than before.  And I've been adding spontaneous little tasks to my day, things like washing the sink or unpacking a box.  So maybe my functionality is improving a tiny bit.

Hopeful Signs

Two things: 

Yesterday I felt good -- all day long.

And today, I definitely notice less pain.

:)

Follow Up Doctor's Visit

I met with my doctor yesterday, and I have to say, it went swimmingly!  My labs show no toxicity, and he said we would have seen something already if there were a problem.  I am tolerating the meds very well.  He asked if I have noticed any changes yet.  I told him that I have moments where I feel very good, but they evaporate pretty quickly.  Before, I would have a very distinct energy envelope between mid-morning and early evening where I felt fairly good as long as I kept within my restrictions.  This is different and unpredictable.

He said he noticed that I got up on the exam table easier than I did at my first visit.  I was impressed that he had not only noticed but remembered.  So often, you feel like a blank face on an assembly line, and you wonder if the doctor even looks up from your chart.  I think he is becoming more and more interested and excited in our little experiment.

I can't say that my capacity for activity has necessarily increased, although I did spend almost two hours on my writing project the other day.  I got rather caught up in my story and didn't even notice the time.  I was pretty wiped out afterward, not surprisingly.  But no crash the next day.  I don't know, there may be some minute improvement, but it isn't big enough to quantify yet.

The doctor renewed my prescription and gave me two refills.  I don't have to return for three months.  By then, I should definitely know if the meds are helping at all.  If not, I stop treatment.  If so, we continue.  Fair enough, right?

My mantra these days is "We'll see, we'll see." 

Week 1: Worse Before Better

I have been taking XMRV treatment for one week now.  I expected to feel worse before I felt better, and I think that is true.  However, it is more of a dip than a plunge.  I take the pill at night, and it does make me feel sleepy.  Now, for those of you familiar with CFS sleep disturbances, you know that this is actually a good thing!  I find I am able to drift off to sleep much quicker than usual, and I"m sleeping more deeply than I have in the past.  However, I'm sleeping longer than I had been by about an hour, and I am slow to get going in the morning.

My energy levels have become unpredictable.  I was used to a reliable "energy window" that would last from mid-morning to early evening most days (unless I overdid it).  Now, I'm finding my energy in bursts.  I'm sluggish; then I suddenly feel pretty good; then my energy abruptly disappears, only to come back again a little later in the day.  I'm riding it out.  I am careful to not overdo it when the energy is there, but to pace myself as usual.  When I feel deflated, I rest.  I've been spending more time in my bed than I usually do, not necessarily crashed or even officially resting, but just kicking back.

I'm not getting much done these days; there are still boxes waiting to be unpacked, but those will wait.  On the flipside, my household is not descending into complete disarray.  I'm still able to do minimal activities like laundry and nagging the kids.  I haven't felt the need to call for additional help, like I was afraid I might have to.

I haven't exercised since the move, for obvious reasons.  No stretching, no yoga.  I think I'll try to ease back into the yoga.  See how well I tolerate it.  I hope I do OK, because it helps so much with pain management.

Ha, once again, all I can say is we'll see, we'll see.

XMRV Treatment: First Impressions

So, it's been three days since I began XMRV treatment, and so far... well, not much, really.  My throat is a bit more sore than usual, and I feel a bit more achy, especially in my upper arms, neck, and hips.  Is that the "inflammation" that people talk about?  Also, I feel a little more sleepy than usual.

I don't seem to be having any negative reaction getting on the medication.  I haven't noticed any side effects related to it, like nausea, diarrhea, or insomnia.  The other effects could very well simply be because I've been doing a lot of push/crash for the last month.  First the move, and then my birthday was on the 10th, and I broke a lot of rules that whole weekend.  I crashed on Sunday, but I felt pretty good yesterday.  I had that little bit of energy that makes me wander around the house picking up things.  Good times.

I've been asked what kind of medication I'm taking, and what dosage, but I don't think it's a good idea to mention specifics at this point.  I'd like to wait and see what kind of results I get before first.

I will, however, mention the supplements that I'm taking that I'm hoping will improve my chances of success or extend any gains I might make.

Currently, I take Trader Joe's multivitamin, vitamin D, probiotics, fish oil capsules, denatured whey protein for glutathione, d-ribose x3 daily, melatonin, and generic acetaminophen PM.  I just ordered some sublingual B12 tabs and l-methylfolate, for methylation.

Hm, other than that -- I had a lovely Valentine's Day!  The kids helped make our special breakfast for dinner, and my husband treated me to See's candies.  I hope you all had a wonderful day, too!

It's Here!

The new medication finally arrived today...and I panicked!  After all my determination and tenacity, the moment of truth has arrived.  I am not ignorant of the risks involved.  And I find myself asking, Am I really that bad?  Do I really want to do this?

I mean, I've adjusted to my situation.  I've got so much help.  And things are better here; without the stairs, I'm finding that I'm bouncing back much more quickly.  Of course, "back" means just getting out of bed and able to take a shower.  I'm still housebound.  I still can't get out and visit with friends.  I still can't go to church.

It's time.  It's time to do this for me, to do this for my family, to do this for everyone out there suffering with no hope.  Maybe I can be a piece of the puzzle.  Maybe I can be a part of finding answers, answers that have been so elusive for so long -- long before I first became sick.

And maybe, just maybe, I'll get better.

Bumps In The Road

I like this picture, because even though the road is "bumpy," it looks like it's headed in the right direction.

I had my doctor's appointment yesterday.  He agreed to give me a one-month trial.  One month, and if there are any negative side effects, he's pulling the plug immediately.  One month, and he would like me to be very honest in my assessment of my symptoms at that point.  He was careful to make sure I shouldn't get my expectations up.  He emphasized that it was very possible that I will not see any improvement.

I was thrilled.  I feel like his approach is the safest and best I can hope for.  He is exercising every imaginable caution.  He is making sure that my health is top priority, and if he ever feels the risks of taking the medication are too great, he is going to stop the treatment.  I'm OK with that.  I left his office with a priceless piece of paper in my hands -- a prescription for hope.

Priceless?  Well, let me reword that.  It definitely comes with a price tag.  I found out that my insurance doesn't cover the medication, and that it would cost about $1200.  For one month.  I can't say I was surprised; I had already researched the drugs and knew it wouldn't be cheap.

So, I now have two options.  I can upgrade my insurance, which would increase my monthly premium.  I would still have a $750 pharmacy deductible that I would have to pay up front, and then the medication would be $60 a month.  Or, since I have no idea if I'll be able to continue taking the meds longer than a month, I could simply pay out of pocket now and wait and see.  I have an option for getting the medication cheaper, but it would require waiting about three weeks to get it. 

I'm leaning toward a combination of the two.  Pay out of pocket now, and then upgrade my insurance if it looks promising.  Upgrading my insurance is the better option if I add a second medication to my treatment.

Which all led to a meltdown this morning.  Why?  It's not just the financial stress this will place on us.  We've shouldered financial stress before, very successfully, I might add.  No, I can't help but wonder, is it worth it?  Which really means, am I worth it?

Ah, you think with time you overcome your teenage insecurities.  You accomplish things, you achieve things, you catch yourself feeling proud of yourself once in awhile.  And then something like this happens, and the old voices you have spent years silencing rise again to the surface.  The old voices telling me I'm worthless.

But what if I asked my children, "If you could have your mom back for just one day, how much would you pay?"  I think the answer would be more than a thousand dollars.  And if I asked my husband, "If there was the slimmest chance that you could ease your wife's suffering for just one day, how much would you pay?"  I imagine his answer would be close to a million.

First Visit With ID Doctor

I had my long-anticipated first visit with an Infectious Disease doctor.  It went as well as could be expected.  He knew a little about CFS, and even less about XMRV.  And here I come in, telling him I have CFS and am XMRV positive.  What did I expect?  That he would turn around and write me a prescription on the spot?

No, of course not.  What I expected -- and hoped -- was that he would be open-minded and intellectually curious.  Which he was.  He gave me a lab requisition to get a baseline, and he told me he would research XMRV before our next appointment, in two weeks.  He said he would consider -- CONSIDER -- treating me, based on his findings.

That's all I can ask.  I know there is a lot of controversy surrounding treating XMRV.  I know that not everyone who tries treatment gets better.  I know that it might not work for me.  But something in me tells me I have to try, I have to see for myself.  If I get better, I am not going to recommend everyone who has tested XMRV positive go out and demand HAART treatment.  But I am going to raise my voice like a bullhorn, and let anyone who will listen to me know that something needs to be done.  More research.  Safer drugs. 

It's time to stop sweeping under the rug 4,000,000 people suffering from such a debilitating disease.

The Tipping Point

When I first heard the news that I was XMRV positive, a tremendous feeling of peace and calm came over me.  The uncertainty vanished.  I know, I know, the science is still out... and yet, I can't help but think that I have found my answer.

My next steps are clear.  I had decided on them before I sent my blood in for testing.  I have an appointment on January 5th with an Infectious Diseases specialist.  I am going to request to begin treatment with the AIDS drugs that have proven effective against XMRV.

I know the AIDS drugs have some serious side effects.  I also know that people with CFS have had a really hard time getting on the drugs.  It will be a challenge.  And yet, I am not wavering.

I've passed the tipping point for me.  My quality of life is so negligible that I am willing to try just about anything that offers hope for recovery.  I am housebound.  I miss out on important events with my family all the time; just yesterday, I was unable to go watch my son tie for 6th place in the school spelling bee.  Side effects are not going to interrupt my life, because there just isn't that much to interrupt.

So, what about you?  Where is your tipping point?  Are you there yet?  Would you take the drugs, side effects be damned, if you KNEW you would recover completely?  Would you let your kids do it?  Or would you wait for science to catch up and offer new, safer treatments?

Name Change

Anyone notice the new name for my blog?

Backlogged

So, I called VIP Dx to see how things were going with the testing.  For some reason, I was a little panicked since I hadn't heard anything from them.  I thought maybe they hadn't received my samples, or they got there too late, or they had been rejected for some reason.  I didn't want to drag the wait out longer than needed.

None of the above had occurred.  Instead, they're backlogged, and instead of four to five weeks, it will take six to eight weeks to find out the results.  Hey, I've waited over four years, what's another week or four, right?  At least I know that something is happening.

It made me think of all the activities that are backlogged in my life.  All the have to's and ought to's that are piling up because I just don't have the energy to get to them in a timely manner.  And then, all the way at the back of the line, so far back I can't see most of them, are my want to's.  Backlogged into oblivion. 

Maybe I should throw caution to the wind and escort one of those end-of-the-liners right up to the front of the line.  If I could only remember what they were.