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.

Note to Self: Stupidity Causes Setbacks

Well, I did it.  I pushed too hard too soon.  I attempted a visit with my sister that required an hour and a half drive each way.  I rested once while I was there, but it wasn't enough to undo the damage.  I crashed hard, and I haven't been able to get back to that blissful feeling I had been enjoying while on the meds.  It's been three weeks, and recovery is slow.

I haven't fallen all the way back to square one.  I'm still better off than I had been over the holidays and with the move.  It's just that feeling improvement and then having it slip from my fingers is frustrating.  I know what it feels like now.  I want it.  I hunger for it.  I stamp my feet and shake my fists when I can't have it.

I have started using essential oils as a supplemental therapy for treating symptoms.  Lavender helps a little bit with sleep.  I'm going to be adding marjoram this week.  It's supposed to have a sedative effect.  I'm hoping that between the two of them, I'll be able to stop taking the over-the-counter sleep aid I've been using.  I use a digestion blend for stomach problems, and it works fantastic.  I've also been taking oregano to fight infections, and an immune-boosting blend.  I have a pain relieving blend that works pretty well if I remember to use it at night.  I wake up with much less achiness.  I've started using cypress for circulation and the jury's still out on that one.  And I've been diffusing citrus oils, wild orange or a blend, which helps disinfect the home and smells delightful.  Citrus is supposed to relieve anxiety and have anti-depressive qualities. 

I don't know if all the oils will work, but like I told my sister-in-law, at least they smell good.  :)

I'm going to switch to a new brand of supplements next week.  It's a complete system of vitamins, minerals, fish oil, and antioxidants.  They claim that it should help with mitochondrial production, inflammation, oxidation, and glutathione production.  All stuff that is helpful for CFS.  They also claim that you're supposed to be able to feel the difference pretty quickly.  If that's true, I'll share the brand name with you all.  If it's not true, I won't bother.  I'm hoping that it may help me rebound from my relapse a little faster.  Help me get back to my state of nirvana.  (OK, I'm exaggerating, but comparatively speaking, that's what it feels like!)

Friday was the last day of school, and we had a few friends over for a casual pool day.   Everyone had a good time, but of course, I paid for it afterward.  I'm looking forward to the day when I can enjoy these activities without fear.  I'm excited that we're moving into summer, because it's a much more relaxed time for me.  I enjoy having my kids home.

Hugs to those of you who are not doing well right now.  You are in my thoughts and prayers.  I hope the sunshine of the season brings healing to you.

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.

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.

Taking Its Toll

We are moving to a new home at the end of this month.  I am very happy and excited about the move.  So many pluses -- it's single story, it has a pool, I can leave so much clutter behind.  And yet, there is that dreaded process of getting there. 

Oh, how I hate to move!  It challenged me to my limits before I got sick.  I know I need to pace myself and leave most of the work to my husband, my kids, and my lovely, helpful friends, but still, it is taking its toll.  Already the stress is biting in to my sleep.  It takes longer to fall asleep, and once I stir awake, there is no way to doze off again.  I have that nagging feeling that I should be doing something, even if I know I really shouldn't.  I feel the days ticking by like seconds on a bomb.  Are we going to make it in time?  Is it possible to get this done?

I see an inevitable crash at the end of the tunnel.  But I also see a wonderful new place for me to rest and recuperate afterward.

Any tips?  I'd welcome any ideas for getting through the next two weeks.

Sticky Situation

Ah, what a day.  I went in to get my blood work done.  I was pleasantly surprised that the wait was so short -- I only got through the introduction of the book I had brought to read.  This is great, I thought.

Not so fast.  The phlebotomist had a hard time finding a vein.  She kept saying, "You're veins are so tiny" while she poked first my right arm and then my left and then back to my right.  She finally took a shot at my right arm, only to get nothing.  I imagine she felt the same as oil men do when they dig for oil and come up empty.

She then told me she'd have to try my hand.  She transferred me a separate room and had me lie down.  She was able to get a trickle from that poke, and bruised me in the process.  Finally, she called another technician to give it the ol' college try.  That dear woman was able to find a vein in my right arm immediately, popped the needle in, and collected the blood just fine.  I sing her praises.

I stayed to rest just a few minutes to make sure it was safe to drive.  Forty minutes.  It had taken forty minutes to drain four tiny vials of blood from my veins.

Lessons learned:

Drink plenty of water the day before.
Get blood work done in the afternoon when I'm better hydrated.
Ask for a new phlebotomist if the one I've got seems uncertain.

Just think, I'll only have to do this every 1-3 months while I'm on the new medication.  :)

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.

New Year's: Look Not Behind Thee

Last year was such a challenge for me. I am moving forward into the New Year with lessons learned in my back pocket and hope for tomorrow.

Christmas Crash

Everyone who is Christmas crashing, raise your hand!

I know it's not just me.  I have a sneaking suspicion that pretty much all of us overdid it for the holidays.

Christmas is a time of reflection for me, a time for taking stock.  What I learned this year is that, although CFS is not supposed to be a progressive disease, it has certainly been progressive for me.  Each year, I have gotten worse and worse, and I've been able to do less and less.  All I accomplished this year was shopping, and most of that was done online.  Even so, by Christmas morning, I felt like I had just run a marathon and could barely crawl across the finish line.  I ended up taking an hour and a half rest in the morning and another hour rest in the afternoon, and I still felt miserable well into the evening.  I was grateful my family went to my in-laws without me, even while I was sad to miss out on the fun.

I suppose the good news is that I felt much better yesterday, so I didn't stay horribly crashed too long.  I'm happy to get back to my regular routine, you know, the one where I'm actually taking care of myself.  I love Christmas, but this isn't the Christmas I remember.  Once again, I find myself packing it away and saying to myself, "Next year has to be better."

I hope you all had a wonderful Christmas, and that it was a time well worth it!  And here's to a healthier New Year for us all.

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?

Christmas and ME

Never is my disability more evident than at Christmas time.  I am the Christmas planner in my family, the decorator, the shopper, the baker, the card sender, the tradition enforcer.  I have been in the heart of the maelstrom, delegating and giving direction to all the parts of Christmas that I love which all lead into a satisfying, Spirit-filled Christmas day.

Not surprisingly, each Christmas since I came down with CFS has been increasingly different, increasingly simple.  Now don't get me wrong, simple is a good thing.  It scales back all the unnecessary and frantic materialism of Christmas and brings you to the heart of the season.

Yet this year, I kind of feel like it has stripped me of Christmas altogether.  I've done my shopping online, and I've almost finished, thank goodness.  However, there are no decorations yet.  No cards sent.  No stories read.  No cookies baked.  Just a huge to-do list of things that I need to do in an increasingly short period of time.

I feel like I haven't had time to even glance at the sky, let alone find the star and follow it.

Perspective

I believe that God led my husband to me.

Seriously.  The night we met, my husband had already had a date lined up.  But as the day progressed, he started feeling like he shouldn't go.  It was a persistent feeling; he thought maybe it was God trying to warn him that he'd get in an accident or something if he went.  Reluctantly, he called the young lady and canceled their date.  It was the first time he'd ever done something like that.

Now, with no plans for the evening, he had to scramble to find something to do.  Some of his friends were going to a church dance that night in Pacific Beach (San Diego).  They persuaded him to come with them.  He arrived late; it was after 11 o'clock.  He made the rounds, saying hi to the people he knew.  And then he saw me.

He knew the minute he saw me that I would be his wife.  He approached me and asked me to dance.  I said yes.  :)  We danced the rest of the night together.  He asked me for my number, and I wrote it on a gum wrapper and tucked it into his shirt pocket so he wouldn't lose it.

The first few dates we had, we talked like crazy.  He didn't even turn on the radio during the first few dates (and this is a man who loves music).  I had been planning on going up to Utah to go to BYU in a couple of months.  He decided he would quit his job and follow me up there.  I believe he would have followed me to the ends of the world, just to be with me.

It took him a mere three weeks to convince me to marry him.  I changed my plans, stayed home, and we were married December 10, twenty-two years ago.  Since that time, I would say that our marriage has fluctuated between really good and freaking amazing.

Why am I going through this story now?  Well, I have been participating in ItStartsWith.Us 's Love Bomb project.  Each week, I get an e-mail telling me of someone who is going through a hard time.  Then I, along with hundreds of other Love Bomb participants, drop by that person's blog and leave an encouraging comment.

This week, the person receiving these Love Bombs is a young woman who has been married for seven years.  She has two young children, and she is pregnant with her third.  And her beloved husband died just a few weeks ago in a hunting accident.

And suddenly, I'm thinking, I'm OK with CFS.  I don't mind it at all.  I wouldn't care if it continued to progress until I was in bed, like our dear friend Laurel, or until my eyesight failed, like our good friend Kerry.   I would only hope to face it with the courage and hope that they have.

And I'm OK with the financial troubles we've gotten ourselves into.  If we went bankrupt 60 times over, or ended up living in our van, I'd be OK with that.  And even if my kids get into trouble, struggle with drugs or teen pregnancy or failed grades or whatever, I can handle that.  Because I have my husband, that wonderful man who loves me enough to cross any ocean, climb any mountain, or stay by my side through any suffering I may endure.

Overdoes It

I overdid it yesterday.  How, you may ask?

I did my stretches and yoga.  I threw a turkey in the oven.  I folded TWO loads of laundry.  And I roasted some vegetables.

My sweet 13-year old daughter hugged me after dinner and said, "Boy, you really did a lot today, Mom."

*sigh*  This is why the type-A person inside of me is climbing up the walls.

Double Whammy

Close on the heels of my root canal, I came down with the flu.  It has wiped me out completely.  You know, prior to this, I never really connected that CFS "feels like" a bad case of the flu.  But this time, I noticed how the flu has amplified my CFS symptoms -- CFS on steroids! -- and I can now see the similarities.

I've been a lump on a log.  No writing.  No blogging.  No tweeting.  Barely any Facebook.  I'm hoping this week is a little more productive for me, but I still plan on taking it easy.

Getting the flu has also made me curious about the immune deficiencies of CFS.  I've heard about it but never really understood how it works.  I have noticed that although my throat and sinuses hurt, my body doesn't seem to be trying to get rid of the germs -- no mucous.  I've been doing a daily nasal rinse to compensate, and I think it's been helpful.  Hm.  I guess, after four years, there's still more for me to learn and understand about this disease.

Hope you all are doing well -- as good as can be expected, at least!  Enjoy your week of Thanksgiving.

A Different Kind of Ouch

Words that strike fear in the heart of any PWC (person with CFS):  I have a tooth ache.

It started Monday night, innocuous enough, but by Tuesday morning, it was raging.  I called my dentist, and they were able to squeeze me in yesterday at 3:30 pm.  Right in the middle of my scheduled rest.  :(

I was told I needed a root canal.  Hm, that's interesting, because the dentist I went to about five years ago was supposed to have done a root canal on that tooth.  Rip-off artist.  I guess that's what you get when you are in a new community and don't know how to get referrals to the good guys.

The procedure took about an hour and a half.  Luckily, I was able to ask for and receive nitrous oxide.  Ah, good ol' nitrous oxide.  At least it minimized some of the stress of the situation.  Hopefully, it will minimize my crash as well.

Because crashing I am!  I took pain medication last night before bed, but I woke at 2:15 am in agony.  Took more pills, but I awoke again at 5:15 am and had to wait another hour before I could safely take more pills.  I was grateful for the pain management techniques I had learned during my childbirth years.  I took another pill at 6:30 am.  Now I have to wait another hour before I can take another pill.  :(

Luckily, my kids are out of school for the long weekend, and I have no responsibilities I need to muddle through.  Just rest and recuperate.  I hope the crash is minimal and short-lived.  A root canal for a healthy person is traumatic enough; for PWCs, it's brutal.