New Day

Courage doesn't always roar.
Sometimes courage is the quiet voice at the end of the day saying,
"I will try again tomorrow."

I thought I should counter yesterday's depressing quote with a more inspiring one. I have no idea where this originally came from; I read it on a plaque in a catalog, cut out the picture, and keep it in my bathroom. I very often look at it and repeat it to myself before bed when I've had a rough day (like yesterday). It's a nice reminder that no matter how bad things seem, there's always tomorrow - a fresh start, a new chance.

I'm still feeling crummy - definitely didn't sleep long enough for one thing. But I have my mom and my husband to help with stuff today, so I'm going to try to rest a lot (not that I have much choice with so little energy!). Thank you so much - once again - for all the wonderful support and love. Every time I picked up my laptop and read new comments, I got teary-eyed and smiled (I'm pretty emotionally fragile right now!). You all always know just what to say, probably because you've been here yourselves.

Hope everyone has a good weekend and a very Happy Halloween!!

So Sick of Being Sick

And when I knew I had to face another day,
Lord, it made me feel so tired.
- Aretha Franklin, "A Natural Woman"

Those lyrics were running through my head last night as I was struggling to get to sleep. My feelings of joy and freedom on Monday didn't last very long. I had about 48 hours of feeling good (better than last week!). By Tuesday morning, the aches were back, but I had to drive to NJ for my appointment with the Lyme doctor, and I stopped at Target afterward since it's right next door (will I never learn?). By Thursday afternoon after my nap, I felt horrible again and have been back on the couch ever since.

I'm just so sick of feeling this bad and being so completely useless. The rest of my family (including my visiting Mom) are at Craig's last soccer game right now. I hated to miss it, but the aches are just too awful. I don't know what else to even say anymore. I know some of you feel this bad all the time, so I don't want to complain, but I'm just so sick of this.

I just bought a train ticket for NY Sunday. My Mom got tickets to Mamma Mia! on Broadway for my birthday this summer, but there is a really good chance I won't be able to go. And Halloween? I usually have some great plan for creative costumes for all of us, but I've done nothing at all this year. At least tonight's dinner is already in the crockpot. I better put the laptop away.

I Took a Walk!

I feel like Rip Van Winkle waking up from a 4-week nap. It's the end of October? The leaves are already half gone from the trees? When did this happen?

I am definitely feeling much better, for the second day in a row, after a couple of days of feeling sort of so-so (a big step up from blech). After breakfast this morning, my son asked if I felt well enough to walk to the bus stop with him instead of driving, and I was so excited to be able to say, "Yes! Yes, I do feel well enough to walk!" So, we walked up the street in the cool autumn sunshine - the air smelled so good!

I also made a short trip to Trader Joe's this morning to restock since we used all our convenience foods while I was sick. I am filled with joy and such a sense of freedom! To be outdoors, to be able to walk, to go to the store when I need to! Amazing. The bad times with CFS certainly do help us to appreciate the good days. Driving with the sun coming in through the window, I was stunned by the bright paintbox colors of the trees. Beautiful.

I have a very busy week ahead, and I am acutely aware of how fragile my well-being is. We have Craig's last two soccer games, I go to NJ to see the Lyme doc tomorrow, my Mom comes to town on Wednesday for our book group, her husband joins us on Friday for Halloween weekend, and on Sunday, my Mom and I are supposed to go see a show in NYC for the day while Ken and Pop Pop and the boys go to a Jets game. Even more for Jamie, he has his homecoming dance on Saturday night.

A too-full schedule even on a very good week, so wish me luck! I will try hard to pace myself. Thanks again for all of your encouragement and well wishes during my long, severe crash - your words of support really helped me get through the dark days!

Follow-Up on Dr. Oz Show

Thanks for the great response to my Friday post about CFS on the Dr. Oz Show. Hopefully, our letters will do some good and convince Dr. Oz that CFS deserves its own coverage, not lumped in with other causes of fatigue.

I thought you'd all be interested to hear that Dr. Teitelbaum himself responded to my blog post and your comments! He explained his own comprehensive approach to treating CFS and his understanding that CFS is different from chronic fatigue; however, this doesn't change the fact that none of that came across in the TV segment. You can read his full comment and my response in the comments section of Friday's post. There is still no video clip of the CFS segment of Friday's show, but Dr. Teitelbaum's own website provides a recap of what was covered (along with a discount on his supplements!).

I also wanted to let you know that we're not the only ones who were frustrated by Dr. Oz's misleading coverage of CFS. There is a very active discussion forum on this topic at Phoenix Rising, an excellent source of information on all things related to ME/CFS. From the forums page, just click on Action Alerts and Advocacy, under the ME/CFS News heading. If you want to participate in the discussion forums, you can register (it's quick and free). The Dr. Oz/Dr. Teitelbaum discussion has garnered over 150 responses so far, so it's clear this is a topic of great interest to the CFS community. Apparently, there was also a lengthy discussion on Facebook in the CFIDS Association group (I missed that while I was sick)

Let's hope our voices will be heard in this matter!

Quote It Saturday 10/24

Slowly, gradually improving here. My energy is finally starting to come back - slowly, Craig is 100% better thanks to antibiotics, and Jamie went back to school yesterday, though he's still pretty wiped out today. Unfortunately, now my husband seems to be catching the virus that Jamie and Craig had this week, starting with some congestion and a cough, so he's running down. Thank goodness he didn't get sick last week - I don't know what we would have done with me being so incapacitated.

Today's quotes are from a novel I enjoyed, The Art of Mending by Elizabeth Berg:

"We're so lucky," she said, and I nodded into her shoulder. "It's kind of scary to be so lucky," she said, and I nodded again. I knew exactly what she meant. Sometimes being lucky is only waiting for a fall.


...There are random moments...when I feel a wavelike rush of joy. This is my true religion: arbitrary moments of nearly painful happiness for a life I feel privileged to lead.
- The Art of Mending by Elizabeth Berg

Both of these quotes very closely mirror my own feelings about my own life, as I described in a very similar way a few years ago in my blog post, A Life of Contentment with Pockets of Despair.

Hope you're all enjoying a relaxing weekend.

Very Inaccurate Coverage of CFS on Dr. Oz

These last few weeks, we've all been reading and celebrating all the scientific, accurate news stories on CFS that have emerged since the news of XMRV in CFS. Well, I saw today that the battle is far from over. I heard that the Dr. Oz Show would be covering CFS today, so I tuned in, expecting to hear about XMRV on a popular, national medical TV show. Wow, was I disappointed! Even my 11-year old son (who's still home sick) could see immediately that Dr. Oz got it all wrong.

He started by announcing that if you are exhausted and sleep doesn't help, then you have CFS. He didn't mention a single one of the immune dysfunction symptoms or even exercise intolerance. He talked about anemia and thyroid problems. Then he explained how people with CFS could be cured (yes, cured!) with diet changes and supplements. The problem was that his CFS "expert" guest was Dr. Jacob Teitelbaum. I read Dr. Teitelbaum's book, From Fatigued to Fantastic, which focuses on chronic fatigue (the symptom) rather than CFS. He doesn't differentiate and claims to have a high cure rate for CFS based on his program of nutritional supplements (of course, that's because his patients have chronic fatigue, not CFS). His book doesn't address immune dysfunction at all. Even worse, Dr. Oz didn't even mention the XMRV research.

I would point you to a video of the CFS segment, but they chose to post a video of the G-spot story on their website instead! Dr. Oz has a huge impact on the general population because of his connection with Oprah. Please join me in telling him that his story about CFS was inaccurate and he needs to tell the REAL story. You can send a message to the show here.

Here's the text of my message:
"I was extremely disappointed in your very inaccurate coverage of Chronic Fatigue Syndrome on your October 23 show. I have read Jacob Teitelbaum's book and many of his articles. He is an expert on chronic fatigue, the general symptom, but not Chronic Fatigue Syndrome (CFS), the defined immune system disorder. CFS is far more than fatigue that is unresponsive to rest. You didn't even mention any of the symptoms of immune dysfunction that are common for CFS: sore throat and swollen glands, flu-like aches, and feeling feverish despite lower-than-normal temperature. In addition, the most unique, defining characteristic of CFS is an intolerance to exercise, where even mild exertion causes a sudden, severe worsening, whereas general fatigue is often improved by mild exercise.

On the show you talked about anemia and thyroid problems, two diagnoses that could exclude a diagnosis of CFS. For someone who actually has CFS, iron supplements, diet changes, and D-ribose would have only a very minor effect on the devastating symptoms, if any at all.

Finally, it is particularly disturbing that you presented such an inaccurate, non-scientific view of CFS at this time, after the momentous CFS research published two weeks ago in Science that connected CFS to a newly identified retrovirus, XMRV. See these websites for more information:
http://www.wpinstitute.org/xmrv/
www.cfids.org

I hope that you will cover CFS again on your show, to provide the real facts and try to un-do some of the damage you have done to those of us suffering from this severe and debilitating disease with your very misleading and erroneous coverage today.

Sue Jackson
CFS for 7 years
Both of my sons also have CFS (yes, it also has a genetic link which has been proven in many scientific studies)"

Tell the Dr. Oz show what CFS REALLY is!

Infectious Autumn

I think I'm a little better today. I'm actually sitting up (well, reclining in a lounge chair) and am outside on the deck. It's a beautiful fall day. I feel like I've missed the whole month of October, which happens to be one of my favorites!

Unfortunately, both of my sons are home sick today. I did manage to take them both to the doctor's office and pharmacy, so that was a big achievement for me! It's a lot harder to rest with them home, though. We need more couches.

Craig has bronchitis and started on antibiotics. Jamie sounded like he was heading to bronchitis yesterday, but his congestion actually got much better overnight, so he has a prescription to hang onto just in case. I think maybe that revved-up immune system did him some good and he plowed through whatever this virus is in just a few days. He's still feeling wiped out, but that could just be CFS.

As I've said many times before here, I am hugely grateful for our wonderful pediatrician (see A Doctor Who Gets It...Priceless). I told her about the latest news linking CFS with the XMRV retrovirus, and she was very excited. She said she's seen two teen girls recently (I think they're the two we sent to her!) who have very severe OI but don't exactly meet the criteria for CFS, and she'd love to have a diagnostic test available to help.

The doctor said she can't remember a season as bad as this one for viruses - not just H1N1 (though there's already lots of that around here), but all sorts of infections. Craig said 37 of the 100 6th graders at his school were absent on Wednesday, and the school nurse at Jamie's high school says she's sending home 20 students every day with high fevers (and those are just the ones who go to the nurse's office!). My kids have done remarkably well so far. We're now considering whether Craig should get the H1N1 vaccine when it's available. His immune system is actually much closer to normal than mine or Jamie's, and he does sometimes catch viruses. I shared Dr. Lapp's advice with our pediatrician, but she's not exactly sure what to do either. It's a tough call.

I'm hoping my heavy doses of doxycycline for Lyme will protect me from the bronchitis. Well, that's probably enough computer time for today - I'm going through major withdrawal! I must be doing a little better because I've progressed to feeling a bit restless and unproductive. That's a step up from just feeling too sick to care!

Has the Other Shoe Dropped?

I am still severely crashed, still stuck lying on the couch with a terribly sore throat and severe aches all over. It's been more than three weeks of this now, when my crashes typically only last a day or two. I am forced to consider the unthinkable: could this be my "new normal"?

Ever since the boys and I improved to the point of being able to function somewhat normally (they with Florinef and salt for OI; me with OI treatment, antivirals, and low-dose naltrexone), a part of me has been waiting for the other shoe to drop. If you read my blog regularly, you know that I am not normally a worrier. I try hard to stay positive, to focus on today, and to be grateful for what we have. But there's always a little bit of anxiety hiding behind the surface, feeling like all three of us are time-bombs waiting to go off.

That part of me has been worried - more about the boys than myself - that one of us will be exposed to one of CFS's trigger infections that will cause a long-term worsening. Both of my boys still test negative for Epstein-Barr Virus, so I mostly live in fear of one of them getting mono, a well-known CFS trigger. I've certainly read plenty of stories of others with CFS who suddenly and inexplicably worsened. So, after almost a month of feeling awful, I have to wonder - is that what's happened to me now?

Fear not, though. While I recognize that my fears could turn out to be valid, I am trying not to let them overwhelm me. I reminded myself last night of the lessons I learned years ago about hope and control, namely that I do have some control over my circumstances and that I am not entirely at the mercy of forces outside myself.

So, I am doing what I can to try to promote recovery - mainly what I like to call Aggressive Resting (a wonderful oxymoron). This is very hard for me! I realized this weekend that I definitely get worse after sitting at the computer or cooking dinner,and I get a little better after lying down for several hours. So, I am newly dedicated to REST...lying down as much as possible, letting Ken handle cooking, even - gasp! - limiting my time on the laptop (this is it, I swear...). Even harder, I think I need to stay home this afternoon and miss Craig's soccer game. I've been dragging myself to the games twice a week, and I always feel worse afterward. This morning, I even turned off the tv, put down the books and magazines, closed my eyes and meditated (twice). I am a multi-tasker at heart, so it is real work for me to truly slow down like this, but I am trying.

And in that spirit, it's time for a quick lunch and a long nap.

Quote It Saturday 10/17

October 17? Seriously? I feel like my life is passing me by as I lie on the couch. Doing a little better today and trying not to overdo.

I've been borrowing a weekly theme from my book blog and posting a book quote each Saturday. I'm kind of cheating on today's quote because I haven't actually read the book, but we did watch the movie with the kids last night, and the movie is based on a book, so that counts, right?

Be the hero of your own life story.
- Nim's Island by Wendy Orr

This line was repeated often in the movie (and, I assume, in the book), and it really resonated with me. It encourages you to take responsibility for your own life, challenges and all, and reject a victim mentality. I think this is my new personal motto.

There's another movie I want to share with you - not actually a quote but more of a concept. After the kids went to bed, Ken and I watched the movie Blindness (also based on a book!). Have you seen it? Basically, a strange epidemic hits where people suddenly go blind. It's obvious right away that it's highly contagious, so widespread panic ensues. The government's response is to round up everyone who's gone blind and put them in prison-like detention centers, where they're pretty much forgotten as the outside world freaks out. There's so much effort put into quarantining the blind people that there seems to be no effort at all to examine them or investigate to find the cause of the epidemic. The detention center at the heart of this story ends up going a little Lord of the Flies as food becomes scarce.

So, partway through this movie, I said to Ken, "It's a pretty pessimistic view of humanity and the government, isn't it?" (that's me, the eternal optimist).

Ken said, "Really? You can sit there with CFS and say that? Isn't this exactly what the CDC has done with CFIDS for 20 years?"

"Wow, I guess you're right. We've just been set aside and ignored haven't we? Do you think now that there's some indication there might be an infectious component to it, they'll stick us in detention centers?"

I just thought the parallels were interesting and ironic. It was a good movie, though parts were pretty disturbing. Hope I won't be seeing some of you in an abandoned psych ward anytime soon!

More Infrormation on XMRV Virus and CFS

Information continues to pour out regarding the new study showing a relationship between the XMRV retrovirus and CFS:

• New York Times Q&A with Dr. Nancy Klimas - and check out the avalanche of comments!
  
• New Yorker follow-up interview with author Laura Hillenbrand
• Information directly from the Whittemore-Peterson Institute, including Q&A and results of a follow-up study showing XMRV occured in over 95% of the CFS, FM, and atypical MS patients tested.
• Information on XMRV testing, and an update, from CFS Warrior. Tests should be available in 30-45 days.
• XMRV statement from the UK's ME Association
• Statement about XMRV study by Dr. David Bell (Jamie and I have both been to see Dr. Bell; he's a wonderful, dedicated CFS expert)
  

We Are Everywhere

There are good reasons why Chronic Fatigue Syndrome and Fibromyalgia are known as Invisible Illnesses. First, there's the fact that most of us look "normal" to people who don't know us. Strangers or casual acquaintances who see us out have no idea how much we're suffering or what a huge effort it's taking for us just to be present. Second, stuck in our houses for most of our lives, we feel isolated and invisible to the world outside.

I was feeling my invisibility acutely yesterday at Craig's soccer game. I'm still very badly crashed, but I dragged myself to the game and was sitting there, wrapped in a blanket and huddled in my beach chair (close to the ground to minimize the effects of OI), aching all over and probably feeling a little sorry for myself. All around me, I could see and hear the other parents, standing on the sidelines, talking animatedly to each other. It was obvious they all knew each other from school functions and other community activities that I usually miss out on.

Then, I struck up a conversation with the mom sitting next to me, wrapped in her own blanket and also sitting in a beach chair. Her older daughter had gone to middle school with Jamie, and her youngest daughter was on the opposing soccer team. Jamie was sitting next to me, also aching, in his own beach chair, and this mom asked him if he played soccer for his school, too. Jamie said to her, "No, I, uh, have some medical problems, so I don't have the stamina to play for the school team."

The other mom was immediately interested (unusual in itself) and asked what kind of medical problems. I explained that Jamie and Craig and I all have an immune system disorder (standard explanation), and she asked, "Which immune system disorder?" I didn't even finish getting the words "Chronic Fatigue Syndrome" out of my mouth before she excitedly replied, "I have fibromyalgia! And my middle daughter also has fibromyalgia plus lupus." And just like that, a bond was formed - we had each found someone else who gets it!

She and I talked non-stop through the rest of the game, practically finishing each other's sentences...

She: Did you hear the news about the new virus last week?
Me: Yes! wasn't that great?

She: There's this medication that works well for any immune system disorders. It's called low-dose naltrexone...
Me: I take low-dose naltrexone!

She: My daughter's knees have been really hurting lately. I'm worried she might have Lyme.
Jamie: I've had Lyme twice.
Me: I got Lyme last summer, and I'm still being treated for it.

She: Has this fall been bad for you? I've had terrible aches...
Jamie and I together: Yes! Terrible aches!

Immediately, she and I both knew we had found someone who understood, someone for whom we were not invisible, someone who really "got it." It reminded me of the way it feels when I discover a new friend through blogs or other communities on the internet who instantly understands me because he or she is living the very same life.

Something similar happened to me in June, when we attended a graduation party for a close family friend and two - yes, two - other moms there sought me out and asked me all about CFS because both of their daughters had undiagnosed mystery illnesses (both quite likely CFS).

We are not nearly as alone as we feel. It is estimated that there are over a million adults with CFS in the US (plus unknown numbers of kids and teens) and many more worldwide. I'm no expert on fibromyalgia, but I think the estimate for that illness is several million in the US alone. Next time you're out, look around. Chances are pretty good that someone else you see has been affected by CFS or FM, either in themselves or in a friend or family member.

We are your neighbors and friends. We are the parents of your kids' friends. We are the people you see in the doctor's office or (more rarely) in the grocery store. We are everywhere.

We are not alone, and we are not invisible.

New York Times Article

Remember I recently posted about author Anne Ursu? Well, she was quoted in a New York Times article yesterday about the new CFS research. It's a great article, except for the inane comments from Reeves at the CDC - makes me want to reach through the computer and strangle him!

Jamie went back to school this morning, in time for his PSAT - hurray! Craig was starting to feel bad last night, but then I discovered he skipped all his meds yesterday (I slept in because I was so sick). Hopefully, he'll be OK now. I'm a little better - still very low stamina but anything is better than yesterday.

Another One Bites the Dust

Things are looking pretty grim at our house this week.

Jamie was severely crashed all weekend and is still home from school. He's spent 4 full days lying on the couch reading. Thank goodness for reading! I think he's on his fourth book since Saturday.

I felt much better Saturday, but it only lasted about 36 hours, then I went into yet another bad crash. This is now 4 weeks in a row for me. I'm grateful that I, so I''ve had a few breaks on the weekends, but I'm getting pretty sick of this. I woke up this morning worse than ever, with my throat so sore I could barely speak and every inch of my body aching horribly. Jamie's on the couch, so I've set myself up lying across a couple of beanbag chairs on the floor. I hope Jamie gets better soon - he has his PSAT exam tomorrow and a full-day field trip to the Renaissance Faire on Thursday.

After all the excitement over last week's CFS news, I allowed myself to daydream a little this weekend...what would happen if this new finding actually leads to a cure? But today I feel like it's back to reality.

Quote It Saturday 10/10

I skipped last week because we were out of town but wanted to get back to my new weekend feature, Quote It Saturdays, started by fellow book blogger, That Chick That Reads. I enjoy posting this weekly feature on my book blog and thought I'd try it on the CFS blog as well, with book quotes that especially spoke to me as someone living with chronic illness.

This week's quote is from a book of essays, Above Us Only Sky, by one of my favorite writers, Marion Winik:

Instead of burning my candle at both ends, I learned to light it only for special occasions.

Marion was writing about plain-old modern life, with all its crazy stresses, but doesn't this perfectly express how we've had to change our lives for CFS?

Hope you're enjoying a relaxing weekend!

Big News in the CFS World

You've probably already heard about this, but just in case...

Yesterday, the results of a recent CFS study were announced that found a certain virus in 67% of 101 CFS patients tested (and less than 4% of controls). This is good news and could potentially lead to some breakthroughs in diagnosis and treatment.

Whether this research leads to anything useful or not, though, the announcement itself was very beneficial - it was covered by all the major news media - big-time coverage proclaiming that CFS has an infectious link and is a real, serious disease! It was covered by NPR (twice - on All Things Considered last night and again on Morning Edition today), by the New York Times, Nature magazine, Science magazine, and many more. Here's the CFIDS Association's take on it. We can use all the good, validating PR we can get!

Coincidentally, the CFIDS Association kicked off a new PR campaign this week called Solve CFS, with some very cool features, including a campaign to raise $1 million for CFS research by 12/21/09. Check out the moving story posted by fellow blogger Jennie Spotilla in this month's CFIDS Chronicle.

I think we're making progress!

Flat Again

Well, I did make it to the beach this weekend, and we had a wonderful, relaxing time. The condo our neighbors loaned to us was perfect - we wanted to move in! And for the first time in weeks, I was able to walk, through the quiet beach town and along the shore. I love the ocean.

But now, here I am, flat on my back again, worse than I was all last week. I had about 3 good days then woke up this morning feeling awful again. I burst into tears several times today - not because I was depressed or melting down but just because everything hurt so much. My throat feels like it's on fire, and every inch of my body aches. I think I may have a fever, too, because Ken came home and closed the sliding glass door in the kitchen, and I said, "Keep it open - it's so hot in here!" He and the boys looked at me like I was insane and said, "We're freezing. It's only 60 degrees out."

A crash this sudden and severe can only mean another viral trigger. The boys say that everyone at school is sick. And Jamie is feeling crummy tonight, too. In fact, I need to turn my laptop over to him so he can struggle through a little homework; he's too wiped out to sit at the desktop computer. I shouldn't be typing anyway - just wanted a little company. This looks like it could be another rough week.

Swine Flu Advice for People with CFS or FM

Came across an excellent article by Dr. Lapp (one of the world's foremost experts on CFS) regarding swine flu advice for people with CFS (aka H1N1).

This pretty much echoes my own approach and what our doctors have supported here. I would add to Dr. Lapp's advice that it makes sense for non-CFS sufferers in the household to get flu shots, just to avoid bringing the virus into the home (we find that even though we don't often catch viruses, being exposed can trigger a crash from the over-stimulated immune system response - probably what's going on with me this week).

I'm still feeling awful, but Jamie went back to school today. I had a little mental breakdown last night sobbing on the couch (sometimes you just have to, you know?), but my wonderful husband talked me down and cheered me up. Trying to rest today so I won't be totally flat for our little getaway tomorrow.

School = Viruses

Too sick to write much today. I've been badly crashed all week - sore throat, severe aches, the works. Craig was home sick on Tuesday (thank goodness he bounces back so fast!), and Jamie hit the wall last night and is home today. When all three of us crash at the same time (and I haven't been very active at all), it usually means there's some sort of viral trigger lurking around. The boys have been telling me that LOTS of kids at school are sick. Lots of kids absent but, even worse, lots of kids coming to school sneezing and coughing. Haven't their parents been reading the news this season??

I hope Jamie and I recover in time for the weekend. Yesterday was Ken and my 20th anniversary, and we're planning to go to the beach this weekend for a brief get-away. Gramie and Pop Pop are coming to stay with the kids, and our wonderful neighbors are lending us their condo in Stone Harbor, NJ. We so rarely get any time alone together...I really hope I'm not crashed for it!