Saturday, June 21, 2014

Quote It Saturday 6/21

Happy First Day of Summer/Summer Solstice! It's actually dark, cool, and wet here today, but we had enough hot and humid earlier this week.

Last night, we went to a high school graduation party for a set of twins. One of them has ME/CFS and was mostly housebound a couple of years ago and the other is healthy, so this was an especially happy occasion. I often say that one of the biggest things I've learned in my 12 years of having a chronic illness is that everyone is dealing with some sort of challenges. Like ME/CFS, they may not always be visible, but everyone has something difficult in their lives to overcome: illness or injury to self or a family member, death of someone close, disabilities visible and invisible, financial problems. That was once again proven true to me last night, as we sat around a table with the parents of the twins (whom are good friends) and a bunch of people we didn't know. The evening began with typical small talk, but someone asked how we knew the graduates, and we mentioned our ME/CFS connection. That led to questions about ME/CFS and about Lyme, which our son has, and then some startling discoveries.

These other people around the table - who seemed totally normal and healthy - began to share their stories, too. One woman has had fibromyalgia for 20 years and a few years ago went to Pittsburgh for a 3-day trip and ended up spending 3 months in a hospital there. They discovered a brain tumor while she was visiting, then she had s stroke during the surgery to remove it. Another guy mentioned (casually) that his daughter was on a ventilator and how excited they were that she could now get by only using it at night. As I often say, when you meet someone, you never know what challenges they are dealing with beneath the surface. I think that's a good reason to treat everyone you meet with compassion and respect, even (especially?) if they seem rude or impatient.

Anyway, there is a connection here to a book quote! I recently read Velva Jean Learns to Fly by Jennifer Niven, a historical novel about a woman who becomes a pilot to help with World War II. My book group all enjoyed the book, and you can read my full review here.

In this passgae, the main character, Velva Jean, muses on exactly this topic of the baggage we acquire through life, as she meets an old friend and wonders about what he's been through:
 “The more things that happened to me, the more I thought it was like carrying a suitcase – you kept adding things to it, like your mama dying and your daddy going away, heartbreak over your husband, heartbreak over a boy that died. You just started adding these things to your suitcase until the case got heavier. You still had to carry it around wherever you went, and even if you set it down for a while you still had to pick it up again because it belonged to you and so did everything inside it.”

          - Velva Jean Learns to Fly by Jennifer Niven
In another passage toward the end of the book, she compares flying a plane to being in charge of your own life:
"If there was one thing I'd learned, it was that you were responsible for your own ship. You had to look after the engine and make sure the plane was in order and ready to be flown. You were in charge of plotting your course. When you were in the pilot's seat, it was your hand on the throttle, no one else's. If your oil ran out or you lost an engine or the engine caught on fire and you had to crash, you were the one saving yourself. No one else could do it for you."

          - Velva Jean Learns to Fly by Jennifer Niven 
 That is exactly how I feel about living with a chronic illness and the approach I have taken with my own illness. If you want to feel better and make the most out of your life, you have be in charge of your own health and be your own advocate. You have to learn about your illness - and sometimes even teach your doctor about it! In the case of ME/CFS, this means being very patient and persistent in trying various treatments, sticking with them through trial and error to find just the right combination for you, and even keeping up with recent research. It's hard to do all of this when you feel so terrible, but it's the best way to take charge of your life...and save yourself, as Velva Jean says.

Well, I hope you are enjoying your weekend, wherever you are!  

Friday, June 20, 2014

2014 Changes to Social Security Ruling for ME/CFS

I watched the CFS Advisory Committee (CFSAC)'s spring meeting earlier this week online, and one of the presentations I found most informative was about recent changes that have been made the US's Social Security Ruling for ME/CFS. Knowing exactly what is in the ME/CFS ruling will definitely help me when I reapply in a few years (I was awarded partial past benefits last year but nothing ongoing), though much will still depend on which adjucator and which judge you are assigned.

In the interest of being timely, I am going to mostly just paste my notes here that I took while I was watching the presentation, with a bit of extra explanation where needed. Please let me know if anything is unclear or if I got anything wrong. I tried to type my notes as I was listening/watching, so hopefully it is accurate, though I may have missed some points.

CFSAC Mtg 6/17/14
Social Security – New ME/CFS Ruling
Mark Kuhn – Social Security Administration

New ruling was effective April 3, 2104.

Replaces previous ruling – provides guidelines for adjudicators (those who review disability applications).

ME/CFS can constitute a Medically Determinable Impairment (MDI) and can be severe and disabling.

Adjudicator Considers:
  • Symptoms
  • Lab Results
  • Medical Signs

Sources for the revised ruling included:
  • CCC (Canadian Consensus Criteria)
  • ICC (International  Consensus Criteria)
  • CDC’s criteria (1994)
  • Past SSA experience

Symptoms (from CDC 94):
  • Profound fatigue 6 mos or more – persistent or relapsing
  • Memory or concentration problems
  • Sore throat/swollen glands
  • Muscle or joint pain
  • Unrefreshing sleep
  • PEM

Look for add’l symptoms (some of these are new):
  • Muscle weakness
  • Disturbed sleep patterns
  • Visual difficulties
  • Orthostatic Intolerance (OI)
  • Respiratory difficulties
  • Cardiac abnormalities
  • GI symptoms
  • Urinary or bladder problems

Require objective medical evidence to support doctor’s diagnosis:

Medical signs:
  • Swollen lymph nodes/sore throat
  • Tender points (from FM)
  • Frequent viral infections with prolonged recovery (new)
  • Sinusitis (new)
  • Extreme pallor (new)
  • Weight changes (new)

Laboratory Findings:
  • Elevated EBV titers
  • Abnormal MRI scan
  • NMH (new) – [my note: Oddly, they’ve included NMH here but not POTS – potentially a big problem for some patients]
  • Other findings, such as exercise test and sleep study (new)

Adjudicator should consider add’l findings as research continues to advance, for example elevated  HHV-6.

Look for co-occurring conditions such as:
  • FM
  • TMJ
  • IBS
  • IC
  • Raynaud’s
  • Migraines
  • Myofacial pain syndrome
  • Sjogren’s Syndrome
  • Chronic lymphocytic thyroiditis
  • New allergies or intolerances (new)
  • Sensitivities to noise, odors, chemicals (new)
  • Loss of thermostatic ability – chills, night sweats, intolerance of temps (new)

5-Step Evaluation for all SSD applications:
    1. Currently working?
    2. Severe impairment?
    3. Does impairment meet listing? (NO listing currently for ME/CFS)
    4. Can the person do past work?
    5. Can the person do any work?

There is no listing for ME/CFS which means that ALL ME/CFS applications will have to go through steps 4 and 5.…or could meet an existing listing for another condition, such as “undifferentiated or mixed connective tissue disease” under immune disorders listing.

A listing has the weight of law and takes longer to get through the system than this type of ruling. A ruling is binding for adjudicators but is not binding in a court of law.


Could this ruling be a first step toward a listing for ME/CFS?
Maybe someday– need more research and eventually testing that can prove ME/CFS and indicate severity. SS would move forward as soon as there is medical evidence to support a listing.

Numbers for those with ME/CFS who applied for SSDI and those who were approved at various stages?
No current data available. Past data has been presented at CFSAC and should be available on their website.

Is exercise test or neurocognitive testing sufficient to establish disability?
Those would be sufficient to establish MDI, but establishing degree of disability will still rely on steps 4 & 5.

Tuesday, June 17, 2014

Movie Tuesday 6/17

Ah, I got all wrapped up in watching the CFSAC meeting online yesterday and today and didn't have time for a Movie Monday post, so here it is a day late. By the way, I learned some interesting things about revisions to the Social Security rulings for ME/CFS watching today's meeting, so I will summarize that for you in the next few days.

We watched a lot of movies this weekend because our youngest son (who doesn't like to watch much TV or movies) was away at the beach with friends, so the remaining three of us had a movie fest! With two men and me, it was back to action and suspense this weekend!

During the week, my older son and I painstakingly went through the Redbox listings from home, looking up titles on some of my favorite movie websites, to pick out one that all three of us would like. After all that research, we did enjoy the movie...but my husband pointed out that he and I had seen it before, a fact I didn't believe until the very ending! One of the benefits of brain fog.

Anyway, we watched Inside Man, a very clever caper movie directed by Spike Lee with an outstanding cast. Clive Owen stars as the lead bank robber in a big operation with dozens of hostages, while Denzel Washington plays his nemesis in the police force, a hostage specialist brought in for the case. Jodie Foster also stars as a highly-paid "fixer" for powerful and wealthy people whose role is not clear early in the film. The movie unfolds with plenty of suspension, as the small group of robbers hold a large group of people hostage and talk to the police. The criminals seem to have thought of everything. It's an elaborate heist, in which they always seem to be one step (or two or three) ahead of the police. If you like good twisty caper movies, this is a great one! We all enjoyed it (even though my husband remembered how it ended!).

Saturday night, the three of us settled in with Homefront, a suspense/action movie starring one of our favorite actors, Jason Statham (speaking of caper films, he was excellent in The Italian Job). Here, he plays an ex-DEA agent who broke up a meth operation in New Orleans by working undercover as a gang member and got the crime leader's son killed in the process. He and his adorable daughter have moved to rural Louisiana (he with a new name) in order to try to live a quiet life away from the nasty criminals who want him dead. Despite his efforts to lay low, he runs afoul of some locals with connections to the drug trade (James Franco plays a truly scary drug dealer), and before long, his old enemies are tracking him down. Surprisngly, this movie was written by Sylvester Stallone (I didn't know he wrote screenplays), based on a book, and although it is mainly an action-packed thriller with lots of fights, explosions, and gunfire, it also has plenty of heart and warmth. Statham plays a loving father just as well as he plays a tough guy, and the relationship between he and his daughter in the movie is wonderful. Again, we all enjoyed it...and this time, none of us knew how it ended!

Finally, on Sunday, we watched Jack Ryan: Shadow Recruit, a movie just released on DVD that we've all been waiting to see. It is based on the popular character from all those Tom Clancy novels. It's a bit confusing because Jack Ryan, a recurring character in the novels, has now been played by 4 different actors in 5 different movies! In this one, a prequel, he is played by Chris Pine, whom we all like. This is basically an origin story, showing how the famous secret agent was first recruited by the CIA for a quiet analyst's job and ended up as a top operative. Kevin Costner plays his boss, and Keira Knightly plays his girlfriend, so the acting was excellent. As you'd expect from a CIA/Jack Ryan movie, there is a lot of action and suspense (and car chases and bombs), but it is also a clever plot about using economic forces as a terrorist tool. Good entertainment.

Have you seen any good movies lately?

And have you ever watched a movie twice without realizing it??

Monday, June 16, 2014

CFSAC Meeting Live Online Today and Tomorrow!

Just a reminder that the latest CFS Advisory Committee meeting is taking place today and tomorrow in Washington, DC. The meeting just started at noon today and will continue through 5 pm today and then again tomorrow from 9 am to 5 pm.

You can watch the meeting live at this link.

Click the link on this page to see the agenda. Public comment periods are today at 1:30 pm and again tomorrow at 11 am.

They keep track of how many people watch from home, so this is an easy way to let your voice be heard!

Saturday, June 14, 2014

Why Everyone with ME/CFS or FM Should Be Evaluated for Tick Infections

(Updated 5/13/20)

That's a pretty sweeping statement I made in the title to this post, isn't it? I certainly didn't start out with that point of view. I used to mentally roll my eyes at people who seemed to see Lyme disease everywhere they looked. But, over the years, I've met and heard from dozens and dozens and dozens of people who were originally diagnosed with ME/CFS and/or fibromyalgia who eventually (sometimes decades later) discovered they had Lyme disease and/or other tick-borne infections (either in addition to or instead of their first diagnosis). Lyme disease is a known trigger for ME/CFS, so plenty of us (including my son and I) have both.

I will provide details and links in the rest of this post, but here are the basic facts:
  • ME/CFS, FM, and Lyme are almost impossible for a patient to differentiate because they share so many similar symptoms. If you have joint pain, headaches, light sensitivity, severe brain fog, night sweats and/or any neurological symptoms, there is an even higher chance that you have one or more tick infections.
  • Most people with Lyme disease never noticed the tick bite - the ticks that transmit diseases are tiny, the size of the period at the end of this sentence. And only 40-50% of those with Lyme disease ever had the bulls-eye rash you hear about.
  • Studies DO show that Lyme is one of many known "triggering infections" that can cause ME/CFS to begin. Roughly 11% of those who get Lyme disease (just like mono and other triggers) go on to develop ME/CFS, whether their Lyme was treated or not. This means there are plenty of people who get both ME/CFS and Lyme (my son and I included).
  • THERE ARE NO ACCURATE, RELIABLE TESTS AVAILABLE FOR LYME DISEASE OR ANY OF THE OTHER TICK INFECTIONS. So, if you've been tested and the result was negative, that provides you with no useful information (though you can believe a positive result) - see details below.
  • Having Lyme disease is actually good news for many people with ME/CFS or FM because Lyme disease, though it can be difficult to treat, IS treatable. I have seen many cases where, once accurately diagnosed with Lyme and co-infections and treated, patients recovered either partially or fully and now live full, active lives, even holding down full-time jobs or going back to school full-time.
So, the details...

Tick Infections
We are no longer only dealing with Lyme disease (if we ever were). Ticks carry at least a dozen different infectious agents (often called Lyme co-infections) that can cause serious illness. Just getting a simple screening test for Lyme (as most doctors order) is not even close to enough. Other common tick infections include babesia, bartonella, ehrlichia,  mycoplasma, and Rocky Mountain Spotted Fever (there are others but these are the most common). One study in New Jersey that tested ticks themselves actually found MORE of them were infected with bartonella than with Lyme, but there are very few doctors who know anything about bartonella. This blog post I wrote a few years ago outlines the different tick infections and their primary symptoms (though I left out Rocky Mountain Spotted Fever, which is quite common).

We learned all of this the hard way. Our oldest son has had ME/CFS since 5th grade. In 7th grade, he got Lyme disease (for the second time), tested positive, and we treated it again, but this time he didn't recover fully. Although we had doubts, the doctor convinced us he had been fully treated, and we chalked his lingering symptoms up to ME/CFS. He gradually got worse and worse until he was finally diagnosed with Lyme, bartonella, and babesia in 10th grade, infections he'd probably had since that 7th grade tick bite. No one had ever tested him for co-infections, so his Lyme couldn't be fully eradicated. (Here's more information on our lightbulb moment when and how we realized he had bartonella).

"I Was Tested for Lyme, and It Was Negative"
If I had a penny for every time I've heard this statement, I'd be rich by now!  Here are just a few reasons why it doesn't matter that your test result was negative:
  • The most common screening tests for Lyme (Western blot and ELISA) look for antibodies to the Lyme bacteria in your blood. Not everyone makes antibodies--especially those with immune disorders like ME/CFS--and even if you do make them, they are not generally present until 6 weeks after infection.
  • Even more sensitive PCR tests which look for the actual Lyme bacteria are inaccurate because Lyme bacteria and the other infectious agents don't stay in the bloodstream - they hide in tissues and joints (hence, the characteristic joint pain). So, any and all blood tests are unreliable for detecting tick infections.
  • Therefore, if you get a positive result, you can believe it, but a negative test result for any of these infections provides no information.
  • One Lyme doctor explained to us that a blood PCR test generally finds Lyme when it is present about 65% of the time (not very good odds!). Spinal fluid tests are about the same, only with much greater risks involved in extracting the fluid, so stay away from those entirely. PCR testing done on fluid extracted from a swollen, painful joint is more accurate, but still comes up positive in only about 75% of the cases where infections are present.
So, it doesn't matter how many times you have been tested and had it come up negative--you could still have Lyme and you could certainly still have other tick infections. I have had relapsing-recurring Lyme disease for over 10 years and have never had a positive test, either PCR or antibody (I know it's Lyme because my symptoms go away with treatment).

If you want to know more about why testing isn't reliable, here is an excellent list of 27 Reasons Why Lyme Tests Are Unreliable that explains it all in more detail.

If the Tests Aren't Reliable, Then How Do You Know If You Have It?
The only reliable way to know for sure whether you have Lyme and/or other tick infections is to be fully evaluated by a Lyme expert. Commonly known as an LLMD (Lyme Literate MD), he or she will evaluate you based on: physical exam, history, pattern of symptoms, and results of the best tests available. They will send your blood samples to the best labs in the country and will test for ALL of the infections, not just Lyme. If any one test comes back positive, you know for sure you were bitten by an infected tick. Then, the LLMD can analyze your symptoms and history to help determine which infections you have. For instance, the tests for bartonella almost never come back positive (it hides even better than Lyme), but there are tell-tale symptoms, like bartonella "lines" on the skin (that look like stretch marks or scratch marks) or burning pain in the soles of the feet that only occur with bartonella.
NOTE: Besides LLMDs, there are also effective LLPA's (Physician's Assistants) and LLNP's (Nurse Practitioner). We are currently seeing a very knowledgeable and experienced LLNP.
Even the CDC admits that a Lyme diagnosis must be a clinical diagnosis (that is, diagnosed based on symptoms), so it's a mystery to me why so many doctors run one flawed screening test and then tell their patients they don't have Lyme.
Most regular doctors have barely even heard of the co-infections, let alone know what their unique symptoms are, so it is absolutely critical to see an LLMD. This website provides links for finding a local LLMD in your area or region (worldwide). Here's another searchable LLMD database. There are LLMDs all over the globe, though you may have to travel a bit (we drove 90 min to see our first one and now about 50 min to see our LLNP).

"My Doctor Says There Is No Lyme in My State/Country"
Even the CDC now admits that Lyme disease is rampant throughout the U.S. Last year, they issued a statement that their previous estimates of Lyme disease prevalence were probably off by a factor of 10, finally realizing and admitting that many cases of Lyme go unreported, and that the total annual number of cases in the U.S. is probably 300,000 or more.

Lyme disease exists in every U.S. state and on every continent except Antarctica. A recent study found Lyme bacteria preserved in amber dating back 15 million years ago!

Anywhere that there are deer and mice (critical parts of the tick's life cycle), there are infected ticks. In some places, other animals besides deer play that critical role in the ticks' life cycle. For instance, they now realize that the growing number of tick-borne infections in the UK are being helped along by the sheep population.

You can't rule out Lyme disease based on where you live. However, if you live in the Northeast U.S., the mid-Atlantic, the Midwest, or Europe, you have a higher than normal chance of getting tick infections. A recent article explained that the number of tick infections reported in California is also rapidly growing. Despite official statements that there is no Lyme disease in Australia, I know of at least a half dozen Australians who have been diagnosed and are getting better with treatment. Tick infections are everywhere!

"I Don't Spend Time in the Woods"
It's a common misconception that Lyme only happens to outdoor enthusiasts who spend days out in the woods. Many people--probably most--get Lyme disease and other tick infections right in their own yard. We see deer in our yard all the time, and we know there are mice around, too - that means infected ticks are present. 

One day last summer, I spent 30 minutes weeding our flower bed. I was sitting on our paved driveway on a towel, reaching into the bed, and I'd sprayed insect repellent on my legs. Later, I went inside to take a shower and found a tick attached to my scalp! Another time, I was again sitting and weeding (only way I can manage any weeding), only right in a bed of pine needles. That time, I found tons of tiny dots on my inner thighs. My poor husband had to pick 80 tiny ticks out of my rear, thighs, and ahem, other areas with tweezers. Those were the nymphs - the ones the size of a period at the end of a sentence - the ones that most often carry diseases.

This week, we were eating dinner when my son looked at me and screamed! There was a tick crawling up my neck. I didn't even go outside to get this one - it came into our house on a package that had been delivered to our front door. I thought I'd gotten rid of it earlier, but apparently not.

Lyme Disease is Often Misdiagnosed As Other Illnesses and Can Cause Mental Illness
Lyme disease is called the Great Pretender and with good reason. It is often misdiagnosed as ME/CFS or fibromyalgia (the joint pain makes this mistake especially common). Doctors also often mistake it for various forms of arthritis (it actually does cause arthritis if left untreated), MS, and even Parkinson's disease. Those last two might surprise you, but long-term Lyme causes neurological damage, so its effects can easily be mistaken for neurological diseases - you can't even tell the effects of MS and Lyme apart on a brain scan.

Lyme disease can even be misdiagnosed as various mental illnesses. Even more surprising, right? But again, Lyme causes neurological damage and can trigger depression, bipolar disorder, and even schizophrenia, as evidenced in this scientific paper, this study, and this case study.

Lyme disease even causes Orthostatic Intolerance (OI) and viral reactivation, just like ME/CFS does.

Some of the common symptoms of tick infections that can also occur in ME/CFS and fibromyalgia include joint pain, headaches, nausea, light sensitivity, severe brain fog, night sweats and/or any neurological symptoms. If you have any of these symptoms, then it is even more urgent that you be evaluated by a Lyme specialist for all of the tick infections as soon as possible.

How Can I Prevent Lyme Disease?
If you've been thoroughly evaluated by an LLMD and are certain you do not have Lyme or other tick infections, then you will definitely want to keep from getting it in the future. My family doctor always reminds me that just because I have ME/CFS doesn't mean I can't get something else! She wants me to always come in to check out any new or changed symptoms, and that is great advice. In fact, I DID get Lyme disease 5 years into my ME/CFS. I knew I had it because I had sudden onset of knee pain, where I'd never had joint pain with ME/CFS before, and nausea (another common Lyme symptom), and all of my "normal" ME/CFS symptoms were much worse. Unfortunately, that's the way other conditions often present when you have ME/CFS--your regular symptoms just get worse. Every test I had for Lyme over the next 3 years came back negative, but my symptoms showed I had it. My Lyme symptoms went away with treatment (both prescription and herbal), though they tend to pop back up every few years, probably due to my immune dysfunction. I am currently treating Lyme again and this time trying some new remedies (herbals) to try to get at the infection that is hiding out in my joints and tissues and re-emerging.

So, if you do go outside, even just into your own yard, you want to prevent tick bites:
  • Always wear insect repellent, preferably one that contains DEET. You need a repellent that repels ticks as well as mosquitos. This Consumer Reports article shows how to protect yourself and which repellents they tested were effective against ticks. Though most contain DEET, they did find one "natural" repellent that worked against ticks...but most others do not. If you are concerned about DEET, wash it off when you come back inside. 
  • Wear light colored clothes and tuck long pants into socks. Ticks generally catch a ride starting down near the ground and then crawl up your body, so you want to be able to keep them out and see them if they are on you. If I am walking through grass or woods, I often spray just my legs and around my feet and ankles.
  • Do a thorough tick-check when you come inside. Remember that the ticks that cause infections are tiny, the size of a poppy seed. When I got all those tiny ones on me, at first, I thought the one I saw was just a freckle! You want to check your skin carefully after being outdoors. This really works - we have found many ticks this way. They like close, warm, dark places, so check especially carefully under your arms, in the crooks of knees and elbows, in the groin area, and on the scalp (use a fine-toothed comb or feel carefully with your fingertips).
For more information on Lyme disease and other tick-borne infections, here are some reliable sources:

Tuesday, June 10, 2014

Hot Blooded

Yup, that's me, but it's not nearly as sexy as it sounds in the Foreigner song. Ever since I got ME/CFS 12 years ago, I have been almost constantly too hot. I asked my OB/GYN how on earth I'd know when I went through menopause when life has been one long hot flash for the past 12 years! I have a closet full of heavy sweaters that I never wear anymore. Even on the coldest days of winter, I wear lightweight layers so I can strip down when I get too hot. It's the same with my oldest son, who's had ME/CFS for 10 years. And summer is just torture for me.

Like most people with ME/CFS, all three of us in our family have lower-than-normal body temperatures. 97.5 F is normal for us, and none of us ever get a fever (well, 99 is about the highest "fever" we get), even with a bad infection - it's a joke with our family doctor.  So, I'm not sure how that translates to always feeling overheated. I guess our temperature regulation (part of the autonomous nervous system) is just off.

I can manage during the day, but this too-hot-all-the-time thing really gets to me at night, especially this time of year when the weather outside is heating up. I sleep really well in winter (with the help of meds to correct sleep dysfunction) because at night, we turn the heat way down - ah, heaven! Unfortunately, it's a lot more expensive to cool things down in the summer. Making matters worse, all of our bedrooms are on the second floor, which never cools down as much as the first floor.

Even worse, a few years ago, we bought a new mattress, not knowing that the top layer in it was that memory foam stuff. This has caused two problems - permanent indentations where my husband and I sleep (with a hill between us!) and the mattress holds heat like crazy. I get up in the middle of the night to go to the bathroom, and the spot where I was sleeping is actually hot to the touch.

We have tried all sorts of remedies. When my son started college two years ago in an un-air-conditioned dorm room, we bought a cooling gel mat for him. It works pretty well to keep things cool, but I found it too hard to sleep on. I like a nice soft, cushiony mattress on top, which is why we bought that stupid pillow-top in the first place. So, with the gel mat, I stay cooler but still toss and turn a lot. Last year, I tried a similar gel-cooled pillow. Again, it does stay cool, but it is super-firm, and I sleep best on a soft, fluffy pillow.

This time of year is the worst because it's not quite cool (or dry) enough outside to leave the windows open at night, but it's not all that hot yet, either, so the a/c hardly runs all night, and the air gets warm and stuffy. I have endured some very restless, hot nights lately, waking up feeling exhausted. That really wrecks me - normally, I sleep soundly for 8-9 hours a night (again, thanks to the meds).

So, last night, I gave in and turned the thermostat down a bit more and also switched the fan on the system from automatic to circulation, where the fan will go on periodically, even if the a/c isn't on itself. Much better! Though, I don't want to see the electric bill next month.

Anyone else have these problems? Anything work for you?

Sleepless in Delaware

Monday, June 09, 2014

Movie Monday 6/9

Sorry I didn't post anything last week in between Movie Monday and Quote It Saturday (which I posted on Sunday!). Things have been really hectic here lately, with our college son home for the summer and starting summer session today, and our younger son finishing his sophomore year of high school last week, with me driving him all over the city all week for final exams, appointments, haircut, and stuff with his friends. He will be able to drive on his own in 36 more days!! Not that I'm counting...

In spite of the hectic week, we had a very relaxing, stress-free weekend. Our younger son took the train to visit his grandparents, and our older son went to the beach with friends, so my husband and I had an empty-nest preview weekend! I did absolutely nothing productive all weekend, which is highly unusual for me...and highly wonderful!

We went kayaking, had dinner at the local Greek Festival, read the Sunday paper (on Sunday!), and enjoyed two movies on DVD. I actually talked my husband into two movies that were not filled with action and/or violence...and he loved them both!

Friday night, we watched Philomena, which I've been dying to see. It stars Judi Dench (who, as my husband says, is fabulous in everything) as Philomena, an elderly Irish woman who finally tells her daughter about the illegitimate son who was taken from her when she was still a teen. Her daughter enlists the help of a disgraced journalist, Martin, to help her mother track down her long-lost son, whom they discover was adopted by a U.S. couple. The cynical journalist and outspoken former nurse travel together, gradually uncovering the secrets surrounding Philomena's son, which turn out to be bigger than either of them imagined. Along the way, they learn to trust and even like each other, each learning from the other. This is an amazing story (even more so because it is true) with stunning secrets, but the best part of the movie is the interaction between Philomena and Martin which often had us laughing out loud.  One of those rare movies that is both funny and heart-warming without being sentimental.

The next night, we watched Nebraska, another 2013 hit that was nominated for numerous awards. This one was even more of a pleasant surprise to us. It's a very understated, quiet film that sneaks up on you. Filmed all in black and white, it is the story of an elderly man with the beginnings of dementia, played brilliantly by Bruce Dern, who receives one of those ubiquitous come-ons in the mail and truly believes he has won a million dollars. He keeps trying to walk to Nebraska from their home in Montana to collect his winnings, as his faithful but exasperated son comes to his rescue again and again. Finally, his son gives in and offers to drive his dad to Nebraska, figuring it will at least get his dad out of town for a while and give them some time together. They set off on this ill-fated road trip and make a stop in his dad's hometown, which is filled with some seriously loser relatives and a smattering of old friends, as well as two unplanned stops in ERs. Describing the plot doesn't do this movie justice. The acting, the production, and even the black and white film all make the movie seem minimalist, but the characters come alive and many scenes are laugh-out-loud funny! Much of the movie reminded us of my husband's dad, whom we are in the process of moving from Oklahoma here to the East Coast. The whole thing taken together is funny, moving, and ultimately positive (though we feared at the quiet, dark beginning that it might be depressing - not at all). Highly recommended.

Have you seen any good movies lately?

If you are also interested in what we're reading this week, check out the Monday post on my book blog.

Sunday, June 08, 2014

Sunday Quote It 6/8

It's June already, somehow - the start of the summer, the end of the school year. And also the season of graduations!
I have chosen today's set of quotes for two reasons: because they are a good reminder for me to slow down and enjoy life and because the book(s) that they come from make really great graduation gifts. In fact, after I read these two small books last year, I immediately ordered both of them to give to the daughter of our closest friends; she graduated from college last year. Next week, we'll be attending a high school graduation party, and I think I will again get these books for the graduate.

The books are a couple of slim volumes by Anna Quindlen: A Short Guide to a Happy Life and Being Perfect. They both offer thoughtful, wise advice on living life and make great graduation gifts. You can read my review of the books here, along with one of my favorite quotes. Here are some others, specifically relevant to those of us living with chronic illness:

"Maybe you have come to feel the way I have. And you’ve come to feel that way for a very difficult or demanding reason. One day you were walking around worrying about whether you had anything to wear to a party or reminding yourself to buy Kitty Litter or toilet paper. And then you were in the shower lathering up, or you were lying on a doctor’s table, or the phone rang. And your world suddenly divided, as my world did many years ago. It divided into ‘before’ and ‘after.’”

“I learned to live many years ago. Something really bad happened to me, something that changed my life in ways that, if I had a choice, it would never have been changed at all. And what I learned from it is what, today, sometimes seems to be the hardest lesson of all.

I learned to love the journey, not the destination. I learned that this is not a dress rehearsal, and that today is the only guarantee you get.”

“But you are the only person alive who has sole custody of your life. Your particular life. Your entire life. Not just your life at a desk, or your life on the bus, or in the car, or at the computer. Not just the life of your mind, but the life of your heart. Not just your bank account, but your soul.”

            - A Short Guide to a Happy Life by Anna Quindlen

I think we can all relate to a life being divided into before and after. I love how Quindlen talks about being in charge of your life - we may not be able to control what happens to us, but we can still control our attitude and how we respond to what happens. I found both little books very inspirational.

Hope you are making the most of today! 

Tuesday, June 03, 2014

Movie Monday 6/2

Yup, it's Tuesday again already - I seem to be perpetually behind with everything!

I didn't want to skip Movie Monday entirely, though, because we saw two good movies this weekend:

Our sons went to the movies (to see Maleficent which they both said was very good) and then had friends to the house Friday night, so my husband and I watched Dallas Buyer's Club which is based on a true story. Wow, what a compelling, emotionally powerful movie. Matthew McConaughey is amazing as Ron Woodruff, a macho Texas electrician who is stricken with AIDS in 1986 and told he has only one month to live. Abandoned by all of his "friends," Ron sets out to defy his death sentence. He heads to Mexico to buy a drug that is not yet available in the U.S., but he discovers the drug is highly toxic and instead, he is nursed back to relative health by an alternative practitioner who shares the latest research with him and treats him with a variety of supplements to rebuild his health and his ravaged immune system. Ron takes a trunkload of the supplements back to the U.S. and sets up a buyer's club to resell them to other HIV-positive patients. His illegal dealings and circumventing of the mainstream medical system make him a target for the government and both local and national medical establishment. The story is captivating from beginning to end, and we found ourselves rooting for the spunky, unconventional Woodruff and his new friends. So many parallels between the AIDS story and the path of ME/CFS makes this movie extra-powerful for ME/CFS patients. A must-see.

Sunday night, our college son proclaimed he was in the mood for a movie, so he and I searched through the offerings at Redbox and settled on City of Bones, a movie based on one of his all-time favorite book series, The Mortal Instruments by Cassandra Clare. We had a full range of experience with this story: my husband read just the first book (City of Bones), I haven't read any of them yet, and my son has read the entire series at least 2 or 3 times and is eagerly awaiting book 6! We all enjoyed the movie, though my son and my husband said a lot had changed from the book. It's a paranormal fantasy about a group of people called Shadow Hunters who can see demons among us that regular humans can't see. It's fast-paced and exciting, with lots of action and a bit of romance, as you might expect from a YA book adaptation.

Have you seen any good movies lately?