Monday, April 12, 2010

Back to the Real World

We got home from our spring break trip at 7 pm last night, so re-entry into the real world was tough this morning!  We drove over 2700 miles, through 8 states, to Louisiana and back, camping in our pop-up camper along the way.  We had a great time, both in rural Cajun country and in our beloved New Orleans.  We ate way too much - the food in Louisiana is so amazing! - and enjoyed camping along the way.  I'll post pictures soon (hopefully) - this week is already shaping up to be a hectic one.

As usual, I felt much better while on vacation than I normally do at home.  I've had various theories over the years - the time in the car keeps me off my feet, not having to do "maintenance" activities like laundry and grocery shopping leaves me more energy for fun, etc. - but I think the most significant factor is simply stress and having too much on my mind.  At home, I'm in constant mental motion, even if I can't manage much physically.  There's just so much to do all the time!  Keeping up with all our schedules, planning meals, running errands, paying bills, picking up kids, picking up clutter...not to mention actual work.  On the road, everything is planned already.  I can just relax and not think for awhile. 

We all really love our road trips together.  We listen to music and audio books, try to find good lunch stops, take naps...well, except for Ken who has to drive!  We love exploring new places and returning to old favorites.  I even managed a LOT of walking in the French Quarter - hours of strolling the Quarter, after struggling to just manage a walk around the block at home recently!  There was a little payback the next day but not much considering the amount of activity.

I did notice, though, that after a few nights of staying in hotels in the city, we all got a bit cranky.  The kids were bickering; Ken and I were bickering.  When we started camping again, everyone seemed to relax.  Maybe we were just overtired from all that walking, but I think camping outdoors brings a degree of serenity.  There's no noise (well, except for the guy snoring at full volume in the next tent on our last night!), no tv, no outside distractions.  It's just the four of us in our little home on wheels.  We have simple meals, sit around a campfire in the evening, and read together before bed.  I certainly sleep a lot better in the camper than in any hotel room.

So, it was a wonderful trip, but now it's back to reality - a week filled with appointments, soccer practice, and schedules.  We have mountains of dirty laundry (the downside of camping), very little food in the house, and I have 400 unread e-mails to get through!  In addition, my mom is coming in to visit tomorrow and staying until Thursday.  I've been looking forward to her visit for a long time - she's coming to my neighborhood book group with me - but the week is packed full of commitments.  Also, within 15 minutes of arriving home, my allergy symptoms went through the roof.  Good old Delaware - home sweet home ( I never had allergies until we moved here when I was 25).

On the bright side, only 2 more months until our summer road trip!

(P.S. If you'd like to read about Louisiana and experience vicariously some of what we did, I highly recommend two wonderful books I recently read and reviewed:  a memoir called Gumbo Tales: Finding My Way at the New Orleans Table by Sara Roahen that I carried with us on the trip, referred to often, and read passages out loud to my family and a warm and wonderful novel set in both rural Louisiana and New Orleans, The Crowning Glory of Calla Lily Ponder by Rebecca Wells (who has Lyme disease) that is especially good on audio.  I recently lent this one to my mom, and she kept calling me to talk about it and cry (though it is very uplifting, despite the tears!).


  1. Sue, so glad that y'all had a good vacation! I hope the relaxed feeling stays with you for a while :)

  2. That sounds so great! We've only done short road trips so far with the kids, but I really think it's the best way to travel when the kids are young. We all love it. Welcome home!

  3. Hi Sue. It's so wonderful that you do well when you travel.

    I travelled to New Orleans twice with my daughter's high school Jazz Choir. Those two jaunts are the two best trips I've ever taken. We went during the French Quarter Festival where bands set up on each block. People wandered, stopped to watch or to dance to a band, then moved on. At one point, our choir of 16 stopped on a block, put on their boom box that had one of their songs on it (I think it was Birdland) and sang and danced. A huge crowd gathered to enjoy it. We felt like part of the Festival.

    Well, as I said, one of the highlights of my life.

    Welcome home!

  4. Feel my envy! It's great to have you back though. Now, easy does it . . . .

  5. Toni -

    The French Quarter Festival is one of our favorite annual events in NO!! (and that's saying something!) It was actually this past weekend, starting the day we left, but we had to start heading back north to get the kids back to school for Monday.

    Your experience there sounds awesome! It's such a special, unique place.


  6. Welcome back! It sounds heavenly. I would love to try a short road trip, but I think it would stress me out. I guess I'll have to live vicariously through you!

  7. Sue, just reading about your vacation gives me a feeling of serenity. Your family (though I know busy) seems to hold a lot of that serenity.

    There's nothing like camping. I wonder if you and the boys might have a tad of sensitivity to the chemicals in the hotel rooms and that might be a part of feeling a bit off there. I love the fact that when camping there are no toxic chemicals. I'm more relaxed in our trailer than anywhere.

    So glad you were able to walk around and enjoy the French Quarters (beyond your expectations). I'm feeling hungry since reading about the food. Have to indulge when on vacation!

    Hope you are able to relax and recoup as much as possible with your mom there...perhaps she even helps?-having someone with non-CFS/FMS arms folding laundry--love that.

    Take it slow and easy...and glad you're back!

  8. So glad your trip went so well and was so much fun. WOW! That is a lot of miles! It is good to have you back in cyber world too!
    Rest up and enjoy your memories...

  9. Anonymous9:11 PM

    Hi Sue,
    Glad to have found your blog and gather information about CFIDS and how you and your son's deal with it. My son got a bad case of mono (EBV) at the begining of the school year. Seemed to be getting better by Thanksgiving, but got really sick that following Monday. Multiple doctor visits and we have a diagnosis of virus induced CNS dysfunction or VICD. Anyhow, good care here in the Bay Area and under the care of Dr. Andy Kogelnik. About to embark on Valcyte treatment. Have you considered this for your boys?

  10. Anonymous11:00 PM

    I am so hungry just thinking of the food! Oh my! Jumbalia! (sp?) Yum!

    I'm glad you all had such a great time. Building great memories is so important especially for those down times!

  11. Yowsa! You're going to be one busy chick for about the next, what, 6 months? Pace yourself with the catch-ups. The laundry is going nowhere.

    I missed you and am so glad to hear about how much fun you had and that you did well. Can't wait to see pictures.

    Take care

  12. Hi, 2boysmom -

    Welcome! So glad you found my blog and thanks for taking the time to comment. You'll find a whole network of CFS bloggers here - a wonderfully supportive group!

    How wonderful that you've found a knowledgeable doctor for your son - that's half the battle!! VICD is basically just a different (better) name for CFS, as you've probably figured out. Knowing that mono triggered your son's illness to begin and treating with anti-virals gives him an excellent chance of recovery! You are definitely on the right track. Just make sure he is closely monitored while on Vaclyte - it's a powerful drug that can be fairly toxic. I tried it for 2 months but had to quit when my white blood cell count dropped too low. Fortunately, if that doesn't work, there are other, milder anti-virals that work well against EBV - Famvir and Valtrex (I've also taken both of those!)

    As for my boys, neither of them has ever been exposed to EBV. Studies on Valcyte and CFS show it to be most effective in people with high levels of HHV-6 and EBV. One of my sons did test positive for HHV-6, but his CFS is mild and he's currently doing very well with just treatment for Orthostatic Intolerance (an effect of CFS). My other son didn't test positive for any viruses, so antivirals probably wouldn't help.

    Welcome to the CFS blogging world! Please let me know if you have any questions or want more information.

    I'd love to hear how your son's treatment goes - good luck!


  13. That sounds so wonderful, and I'm glad you had a lovely time.

  14. Anonymous12:36 PM

    Hello Again Sue,
    My son did test positive for HHV6 as well, so apparently he is a good candidate for antivirals. He will be closely monitored. His doctor worked on the Valcyte study with Dr. Montoya at Stanford - so he is very familiar with the drug and delivery of it.

    Wanted to also thank you for the way you have set up the threads to find previous postings by subject. Your information about Orthostatic Intolerance and using Gatorade has been very helpful. My son has low BP, but at times a very fast pulse (101 or so) - POTS per our doc is very common with the illness... so we are pushing the Gatorade and this seems to help with the dizziness. I had also read about your use of D-Ribose and it happened that his doctor also recommended it. We started it about a month ago. We mix it into the Gatorade first thing in the morning to help his energy levels. Seems to be working.

    I have used your links to read up and appreciate your listing of other folks blogs to follow. Very interesting as I have never before read any blogs until this happened. Great use of technology!

    Glad you had a good time on vacation. Love New Orleans and the FOOD! Haven't been in a long time... Gumbo Shop, KPauls, Mr. B's, the oyster bars,Brennans, etc etc.

    Again Thanks for documenting your life and experiences! Will post on how the Valycyte goes. Waiting for insurance to process the order.

  15. 2boysmom -

    Sounds like your son is in good hands! I'm glad the information is helping you - yes, we all often say, "what on earth did sick people do before the internet??" - It's an amazing thing, both for information sharing and for finding people in similar situations to talk to.

    We had lunch at the Gumbo Shop one day! My husband and I used to live in NO in the 80's, so we've had many wonderful meals at Mr. B's and Brennans and all the other great restaurants there.

    Good luck with the Valcyte!


  16. Anonymous4:27 PM

    Really exciting trip! Yes, the outdoors is great for those of us with chemical sensitivities!

    I'm trying out VCO (virgin coconut oil) as a potential anti-viral. One thing positive that I've seen from it is my white blood cell count (neutrophils) actually has risen compared to when I wasn't taking it last year. Also it doesn't kill harmful bacteria in the body. I have yet to see if it is helping me, though I think it may be. I felt like I had a herx reaction for the first three weeks, but since then, I think it is making me a bit more energetic that I was before. I'll keep posted on the progress.

    I'm also using dulse as an electrolyte for OI. I put a few flakes of it in a small cup of hot water and add a bit of sea salt, to make a potent electrolyte broth that is low in sugar. Might be a tough sell for those who aren't keen on seaweed though!

    Good luck to all!


  17. Anonymous10:47 PM

    Mindfog + typing = fail...

    That should say "It only kills harmful bacteria in the body, not good bacteria"



  18. Anonymous11:51 PM


    the most unique and wonderful thing about your blog: the positively and practicality! Hope you never stop blogging!


  19. D -

    I did have to read that sentence a few times, but I figured out what you meant! ha ha - it happens to all of us!

    David -

    Thanks very much! I'm having a rough week, and your kind words really made my day!


  20. Anonymous3:36 PM

    Thanks, Sue! Hope you are getting some rest and will feel better soon.

    I should say that I wouldn't recommend all natural therapies across the board. I took Oil of Oregano for a short while, and believe it to be very potentially harmful, especially to those with chronic illness. For me, I'm pretty sure it reduced my blood platelet count to below the normal range. I stopped taking it and my platelets have been fine since. I've heard of other people getting infections from O of O as it killed off all the bacteria in their system. As well, it is very harsh on the tissues of the body, even when diluted. So in case anyone starts looking into natural remedies and has O of O recommended to them, I would really advise against it! (I call it "Oil of Oreg-Oh-No!")

    Take care, :)


  21. D -

    Thanks for the tip! I agree about natural remedies - they are just as likely to cause side effects as medications (sometimes more so because they're unregulated and there's less research behind them), and you have to be careful.

    I tried Oregano last year because I'd heard it was good for Lyme (I got Lyme 18 months ago), but I stopped after a few days - it gave me severe diarrhea!

    Actually, supplements would be a good topic for a blog post...


  22. Anonymous4:38 PM

    That's terrible! Isn't it great being your own guinea pig? Well, if we can save some other people the trouble of using O of O then that's a good deed.

    I'd love to hear what supplements others are taking. I feel like we've tried most of them, but there must be others, or other brands that are worth trying.