Thursday, November 29, 2012

Switching to Long-Acting Beta Blockers

(NOTE:  I am not a doctor and do not intend to offer medical advice to anyone since we are all different.  In this post, I am just hoping to share my own experiences with a medication that has helped me.  You should talk to your doctor before trying any treatment yourself to make sure it is appropriate for your own particular circumstances.)

I made a change in my medications last week that has so far yielded great results and a definite improvement in my quality of life!
[For those who aren't regular readers of this blog:

First, go back and read this post on Orthostatic Intolerance (OI) if you don't know much about it or think it doesn't apply to you.  Everyone with ME/CFS has some form of OI (difficulty maintaining a steady blood pressure and heart rate when upright, whether they go up or down or all over the place) which is caused by autonomic nervous system dysfunction. Check out my post on In-Office OI Testing if you want to get tested yourself.

Then, read the post that explains how OI relates to exercise intolerance aka post-exertional crashes.  And finally, catch up on my past experience in using beta blockers to treat my OI.]
 So, almost two years ago, I started taking beta blockers to help treat my OI.  They helped me immediately and since then, I have been able to be much more active - taking walks, using light weights, and even going to the grocery store, all without crashing later.  My doctor started, in January 2011, by prescribing propranolol which is a short-acting beta blocker.  She figured that would give me the best flexibility for adjusting the dose throughout the day.  I settled into a pattern of taking 20 mg as soon as I woke up in the morning, another 20 mg after lunch, and occasionally, a third 20 mg dose after dinner, if I was going to be active or out in the evening.

But there were some problems.  The biggest problem was that by the time I woke up in the morning, I had no beta blockers in me, so my POTS would be in full-on attack mode - just getting out of bed, brushing my teeth, and getting dressed would send my heart rate soaring up to 120, 130 or higher (in fact, my POTS may have been worse at that time, due to a rebound effect from going without them all night).  I had to severely restrict activity in the first hour after I got up - couldn't shower or carry the laundry basket downstairs or anything else.  I had to lie quietly on the couch and wait for the beta blockers to kick in.  My friends like to take walks in the morning, and one of them works and needs to walk early, but I was here in the house, waiting for my heart rate to calm down.

Meanwhile, my son, who was barely able to get up of the couch for the past 18 months, started long-acting 24-hour beta blockers at the end of August.  He started college a week later and is doing GREAT.  He not only walks all over campus, he also plays Frisbee with his friends, has only missed 3 days' of classes all semester, and is even doing a workout video called Insanity (!) with his friends.  Beta blockers weren't the only factor in his improvement, but they were one of the biggest causes of this miraculous change.

Finally, besides my son's experience, I heard that several other young friends of ours with ME/CFS were also much improved with long-acting beta blockers, most of them prescribed by Dr. Peter Rowe, who is one of the world's foremost experts on pediatric CFS and OI.  He recommends taking a 24-hour beta blocker at bedtime; he says when taken that way, it will help improve sleep as well as overall functioning because random bouts of tachycardia disrupt sleep during the night for people with POTS.

So, given all this, I asked my doctor if I could switch to a long-acting beta blocker.  She considered the ones my son takes and others that other patients of hers take, but decided the best thing for me was to stick with propanolol which - surprise to me! - comes in a long-acting variety also.

The first night I took it (60 mg), I woke up the next morning and put my heart rate monitor on immediately.  Right out of bed, my heart rate was only in the 70's!  I washed up, got dressed, and even carried a load of laundry downstairs, all the time with my heart rate varying between 70 and 90 - a huge improvement!  However, during the morning, I noticed that my heart rate would suddenly jump up above my AT (about 103) - when loading the dryer, cooking, etc.  I called my doctor and asked her if I needed a higher dose (I had encouraged her to start with the lowest dose available), but she told me to be patient and give it a week or so, that it would build up in my system and become more effective over time.

She was right!  I have had a really good week and a half - so much better than my last two months.  We spent the weekend up in Rochester, visiting my family for the holiday.  Normally, those visits completely wipe me out, and I barely make it through each day.  I did great last week!  I actually enjoyed all the family gatherings for the first time in years because I felt so much better.  And now, back at home, I have been taking walks, lifting weights, cooking, etc.  I LOVE being able to get going in the morning without waiting for my meds to kick in.  I can shower when I first get up!  Woohoo!  And I do think I am sleeping better, too.

I'm not saying beta blockers are a cure-all, but they have really allowed both my son and I to be more active, do more, and enjoy our lives more.  Even better, we have both discovered there is a positive domino effect.  Being able to exercise more improves muscle strength, cardiovascular health, and overall physical condition...which in turns helps us to feel even better and do even more!

A couple of tips to remember if you want to try beta blockers (or, really, any ME/CFS treatment):
  • There are dozens of different beta blockers out there, of several different types.  Wikipedia has a long list of uses for beta blockers, with this warning: "Large differences exist in the pharmacology of agents within the class, thus not all beta blockers are used for all indications listed below."  It can take a lot of trial and error to find exactly the right one for you, so DON'T GIVE UP!  If one doesn't work for you or has side effects, try another!
  • As with most meds for CFS, it is usually best to start at the lowest possible dose, then go up gradually, if you need more.  With beta blockers in particular, one side effect is fatigue (yes, the exact thing we are trying to reduce!).  So, if you feel worse on beta blockers, then your dose is almost certainly too high.  Try reducing to the lowest dose possible, even cutting tablets in half or quarters if needed, especially if you are one of those people who always overreacts to meds.  If even the lowest dose is too much, try a different beta blocker (see #1).
  • Beta blockers are commonly used to treat high blood pressure, so you might be concerned that taking them will lower your already too-low blood pressure.  That hasn't been the case for me nor for my son (we both have NMH as well as POTS) or any others I've spoken with.  In fact, my BP has been steadier on beta blockers, just as my heart rate has, and it has not gotten lower.
  • Beta blockers do not actually lower blood pressure, per se.  They work by blocking certain hormones in the body that affect heart rate and blood pressure.  The one I take, propranolol, is a non-selective beta blocker that blocks the action of both epinephrine and norepinephrine; others work differently.  We know that people with ME/CFS have messed-up endocrine systems that don't release the right amounts of hormones at the right times (which contributes to everything from sleep dysfunction to emotional swings to autonomic nervous system dysfunction aka OI).  Anything that helps to control and maintain steady levels of any hormones helps improve our symptoms, in our experience.
  • Did I mention...DON'T GIVE UP?  It often takes many trials of many different meds and doses to get the effect of the beta blockers just right, so keep trying.  My doctor was thrilled when I asked her if I could try beta blockers.  She said, "that's an easy one to say yes to," because they have been used safely for decades for many types of conditions (as opposed to some of the new research I sometimes bring her!).
So, that has been our experience.  I wanted to share my excitement with you, of being able to do more and feel better, in the hopes that perhaps it will help you, too.

Monday, November 19, 2012

Movie Monday 11/19

 I was very badly crashed this weekend - one of those lost weekends when I was totally useless and trapped on the couch.  So, the only thing I was able to do was read and watch movies.  Coincidentally, Ken and I were on our own both Friday and Saturday night, as Craig spent the entire weekend at his friend's house (they felt bad because their son was stuck at our house through the whole hurricane!)

So, Ken and I watched 2 movies this weekend - one horrifyingly bad and one surprisingly good:

Since Ken had been so kind to me all week, taking care of me and running errands while I was crashed, I chose the Action section at Redbox Friday night (while he was getting Thai food for dinner) and chose The Letter, described as a psychological thriller.  It was definitely psychological but contained no action or suspense.  This reviewer at IMDB so perfectly captured its awfulness that I thought I would just quote from it:
"“The Letter” is not a thriller. It is barely a film. It’s a boring, self-important, disjointed and pointless pile of tripe masquerading as a movie.

The story, what little there is, follows Martine Jamison (Winona Ryder), who is starting rehearsals on her new play in New York. A new actor named Tyrone (Franco) causes problems on the set and develops a fascination with her. Over the next weeks, Martine becomes paranoid that someone is trying to poison her, and she begins to rewrite her play.

Honestly, that one-paragraph blurb makes more sense and is better constructed than the entirety of this film."
          - Kevin Carr
Well, that pretty much sums it up.   This movie was just really bad, and not even funny bad.  It made no sense at all, even when the "big secret" was sort of revealed at the end (I think).  Ryder was good, as she always is, but everything else was awful.  In fact, as I sat down to write this review, I asked Ken, "Hey, do you have any idea why it was called The Letter?  Was there a letter even in the movie?"  Nope.  No idea why it even had that title.  Total drivel.

We had better luck on Saturday when we watched a DVD I had gotten from the library last week for my Mom and I to watch together.  Yup, we both agreed a chick flick was far better than The Letter!  We watched The Vow, starring Rachel McAdams (as Paige) and Channing Tatum (as Leo), and it was a surprisingly touching and unique story, based on real-life events.  Paige and Leo meet and fall in love and get married.  Four years after they met, they are in a car accident, and Paige loses her memory of the past five years.  As far as she knows, she is still in law school and still engaged to her old fiance, Jeremy.  She has no memory of Leo at all; when she wakes from her coma, she thinks he is the doctor.  They story continues as Leo tries to woo her a second time, but Paige is emotionally scarred and wants to be around what is familiar to her.  It was warm and more complex than I expected, with some humor and drama - all in all, a wonderful love story, made even better by the fact that it is true.

Have you seen any good movies this week?

Friday, November 16, 2012

Emotional Cost of the Disability Process

I am in the final stages of my final shot at getting Social Security Disability.  I have had ME/CFS for 10 years, applied to Social Security several years ago, and have already been rejected twice.  My lawyer is helping me to prepare for my final hearing, before a judge (by video), next month.  My chances are slim because Delaware has the 3rd lowest approval rates for disability of the 50 states.  Lucky us.  It really comes down to which of the four disability judges you get; some are known for turning down almost everyone.  That is just so wrong, that in the end, it doesn't matter what the merits of your case are but which judge you get.

I met with my lawyer a few weeks ago, and he explained that my case was weak because it relies mostly on self-reporting my limitations - I wrote a narrative explaining what I can and can't do and how the post-exertional crashes and OI restrict my activity level, made copies of 10 years' worth of calendars, data, and graphs, and submitted letters from my doctors.  Despite all this, my case has now been rejected twice, so I am trying to strengthen my case with more medical evidence (like my recent OI test).  Ironically, you have to work very hard in order to prove that you can not work.

Beside the physical consequences of having to put so much effort into filling out forms, gathering and copying documents, requesting letters, etc., I am finding that the emotional cost of applying for disability is much greater than I expected.

For starters, there is the very degrading and dehumanizing aspect of simply not being believed.  I have tried for 10 years to carve out a second career as a freelance writer in accordance with my limitations, and I have been unsuccessful in earning enough money to contribute anything significant to my family's income.  I would give anything to be able to be productive again!  And yet, after submitting all of this evidence of my disability, two sets of reviewers have now told me that I am perfectly capable of working full-time as a consultant, like I used to.  Really???  So, even though sitting in someone's living room for a 2-hour book group leaves me exhausted and useless the next day, Social Security says I am able to manage 8-hour days spent on my feet auditing or teaching or leading groups of people.  It's so absurd it is almost funny...except it's not funny when it is happening to you.

My lawyer suggested getting one more set of letters from my two primary doctors, along with two more forms for them to fill out, specifically stating that I can not sit up for more than 2 hours without needing to lie down and rest so I am unable to manage even a sedentary job.  I met with my primary care doctor yesterday, and she was wonderfully supportive.  She is also angry with Social Security for not accepting all the previous evidence submitted.  She typed another letter, while I was sitting there, which leaves no doubt that I can not work.  She explained to me that she rarely writes this sort of letter, even though she is asked frequently.  She said, "It is rare that a patient is so disabled that they really can't manage any job at all.  I wish the judge could look through the records and see how rarely I have supported a disability claim."  But she did it for me.

When I got home from her office, I found a letter from my CFS specialist waiting in the mailbox for me.  She is also getting frustrated with this ridiculous process and wrote a very strongly worded letter to go with the form.  It was exactly what I had asked for.  So, why did it make me want to cry?

Despite 10 years' of daily experience telling me this, it is still disturbing to read in black and white, "...I deem her prognosis to be poor and recommend total and permanent disability."  Having to face the reality that my illness is severe and permanent is heart-breaking.  I think my primary care doctor (who knows me well) realized this because she said to me very gently, "I'm going to write that your illness is permanent so there is no question of the need for disability, OK?"

There are so many things I want to do with my life!  I want to write another book but have not found the energy or productive time to get further than the first chapter and outline, after five years of trying.  I want to go backpacking again and take long hikes through remote wilderness with my family.  I want to exercise - oh, how I want to exercise!  I almost started crying yesterday when I drove past a sign for Zumba classes - I would love Zumba!  I want to spend time with my friends and family and really enjoy myself and them, instead of always having to be so careful.  I want to write and travel and hike and,!  I used to define myself in part by my professional success.  I became an expert in my field, wrote a book, gave talks at conferences and meetings; I enjoyed my work and was proud of my success.  Knowing that is all in the past is heart-breaking.

I think this is all hitting me extra hard because I haven't been feeling well lately.  In fact, in preparation for my doctor's appointment yesterday, I looked back over the last two months (still keeping those records!) and realized I've been worse since the beginning of September.  So, that makes the emotional stuff harder because I am even more limited and restricted than usual.

I think this process of applying for disability would be difficult even if the process itself were perfect; it's hard to face your limitations in such stark terms.  But the fact that the process is incredibly messed up just makes everything so much worse.  It is humiliating to keep trying to prove how disabled you are, when it seems like no matter what the evidence shows, you will be rejected and not believed.

Well, one way or another, it will be over a month from now, but I think the grieving will go on.

Wednesday, November 14, 2012

Update on Our Gluten-Free/Dairy-Free Diet

This post is long overdue, but things have been very busy around here.  Way back in July, I wrote that my son, Jamie, and I would be trying a gluten-free/dairy-free diet on the advice of a consultant.  Since then, some of you have asked how it's going and whether it has helped, so here is a recap.

Jamie, 18, was dairy-free for 9 weeks and gluten-free for 14 weeks; he has now added both back to his diet, though in moderation.  He does think he may have some mild dairy intolerance: he notices some GI symptoms after drinking skim or low-fat milk but not as much after eating ice cream (which he ate at every meal after being dairy-free for 9 weeks!).  This makes sense if he has a mild lactose intolerance - the lower the fat content in dairy products, the higher the lactose content.

As for me, following the strict no-dairy diet only reinforced to me how severe my dairy intolerance really is, and I am trying to remain completely diary-free.  With no dairy at all in my diet, my GI symptoms cleared up amazingly.  I've been cheating a bit since Halloween, with all the yummy candy bars in the house, and I am starting to have trouble again.  As Jamie says, "It's a slippery slope, Mom!"  He's right - when you start cheating a bit here and there, it is easy to fall out of the habit.

Like Jamie, I have added gluten back into my diet just recently but in very small amounts.  I am still eating gluten-free bread when I want a piece of toast and sticking with gluten-free flour when I bake.  I have, however, added oats back to my breakfast options, though not every day.  I found that the gluten-free diet had an unexpected negative effect: it left me quite constipated, in spite of all the fruits and veggies I eat.  I guess all those whole grains were doing their job!

It is hard to say whether the restricted diet helped either of us in terms of energy and overall health (which was our reason for trying it).  I certainly didn't improve over the past 15 weeks - in fact, I haven't had a very good fall generally.  Jamie has improved - stunningly, in fact - but we tried so many new things all at once in August and September, in an attempt to allow him to manage college, that it is hard to tell what helped.  He believes that beta blockers, started the week before college, are the main reason for his miraculous improvement, and I think he is probably right.  But we also changed his diet and started about a dozen new supplements over this time, so it is impossible to tell exactly what helped the most, even though I tried to add new things one at a time.

In addition, I believe it is entirely possible that the diet restrictions helped him get past the very low point he was at, even if the effect isn't obvious.  We know that blocked methylation processes were almost certainly an issue for him (see previous post), based on his extreme reaction to his treatment for tick-borne infections.  Gluten, casein, and gliadin (a protein similar to gluten found in oats) all block one of the methylation pathways in people with illnesses like ME/CFS, so perhaps the diet helped to unblock that pathway, and once it was working more normally, Jamie's own body was able to take over and continue to improve, even with adding some dairy and gluten back in recently.  Jamie is also tolerating his Lyme meds better - after 18 months, he is finally up to a normal dose of doxycyline! - and that may also be due in part to the dietary changes.  We will probably never know exactly what role diet played in his improvement, but he and I are both on the look-out for any regression now that he has dropped the restrictions - so far, so good!

I planned to include some tips for cooking gluten-free and dairy-free, but that will have to wait for another day, since this post is already so long and I really need to get some other things done this morning.  So, look for those in an upcoming post.  I'm interested to hear whether others have seen improvement in energy and overall health from restricted diets.

Monday, November 12, 2012

Movie Monday 11/12

Ah, sorry for the long stretch of silence last week!  I drove to Connecticut and spent the week taking care of my mom who had hip surgery recently.  It was tiring, as you can imagine, but we had a wonderful time.  We rarely get any time alone together!  I enjoyed cooking for mom, since we like the same wide variety of flavors.  Besides eating yummy food, we spent lots of time talking and watched some movies, too:

We started with a light romantic comedy, When in Rome.  It was just OK, based on a pretty silly premise about coins in a fountain in Rome that make people fall in love with you.  It had a few funny moments but was mostly just light, predictable fluff.  However, if you have seen the movie Napoleon Dynamite, then this scene with its star, John Heder, and the surprise twist at the end is actually hilarious.  I shared it with my sons when I got home, who have seen Napoleon Dynamite roughly 100 times.

We decided that had been just a little too light for us, so next we watched The Stone Angel, starring Ellen Burstyn as an old woman looking back on her long life.  Her oldest son wants to move her to an assisted living facility, and she doesn't want to go.  The scenes of the present are interspersed with her memories of the past.  She lived a difficult life with many heartbreaks (and also some happiness!), so it was a somewhat sad movie but also very warm and touching.  My husband would have hated it - he doesn't like to watch anything sad - so it was perfect to watch with my mom.  She and I both loved it; it's about real life, with all its ups and downs.

Back home this weekend, Ken and I watched To Kill a Mockingbird, with Gregory Peck.  I know it's an old one, but I'd never seen it, and it's based on one of my all-time favorite books.  Peck didn't look quite how I pictured Atticus (though he played the part well), but I thought the rest of the casting was perfect.  As with all movie adaptations, there were some omissions from the book that I missed, but overall, it is a wonderful movie with all the warmth, humor, and drama of the book.  I just adore Scout, especially when she goes to school...and that ham costume is hilarious! 

Have you seen any good movies lately?

(If you are also interested in what we are reading, check out the Monday post on my book blog).

Monday, November 05, 2012

Movie Monday 11/4

I thought we'd spend our time inside during Hurricane Sandy, watching movies with the kids and reading aloud once the power went out.  Ha!  We never lost power - which was very fortunate, of course - but it meant that our two sons and their friend (who was stuck with us for the duration of the storm) played video games nonstop (with a few board games thrown in for good measure)!  So, Ken and I read a lot, and we did finally watch some movies together after the storm had passed:

Tuesday night, before our oldest son returned to college, we all watched Thor.  I've said here several times that I've had my fill of superhero movies the past few years, but my husband and kids love them, and I'd heard Thor was good.  And it was good...but it was another superhero movie!  It is, of course, the story of Thor, the Norwegian mythological figure who wields a hammer.  In the movie, Thor and his compatriots are actually real but have remained on their own planet for the past however many centuries.  Thor is all set to ascend to the throne, but he does something rash and dangerous and is instead exiled to earth. Personally, I liked the parts that took place on earth the best.  The movie has an amazing cast, and I loved the humor integrated into the story throughout (plus actor Chris Hemsworth who plays Thor looks amazing wearing a t-shirt....or not!).  My kids would probably disagree and say they liked the off-earth, fantasy parts of the movie best.

Friday night, despite the very short school/work week, I was beat.  So, when my son pleaded with me to put the pork chops back in the fridge and order Chinese take-out, it didn't take much convincing!  On the way to pick up the take-out, I stopped by Redbox and grabbed a couple of movies - yes, a perfect evening!  So, with our son, we watched Safety Not Guaranteed, an Indie flick that made my husband say, "Oh, no, not another quirky movie!"  And, yes, it was definitely quirky but also very warm, funny, and likeable.  A writer for a small Seattle magazine (played by Jake Johnson who plays Nick on New Girl) decides to follow up on an odd personal ad looking for a partner for time travel.  He takes two interns with him to investigate.  One of the interns, played by the adorable Aubrey Plaza (who I just read is from our town, Wilmington, DE!), pretends to answer the ad but gradually comes to like the odd guy who placed it, as he trains her for their "mission."  It was funny and tender, and all three of us enjoyed it very much.  I've included a clip below, in case you are interested.

Double-Feature!  After Craig went to bed, Ken and I watched Rock of Ages, the 80's rock tribute starring Tom Cruise.  It was OK, but we didn't love it.  It turned out to be a musical, based on an actual stage musical, and we guessed it probably worked better live.  Despite the impression given by the ads and previews, Tom Cruise's character, Stacee Jaxx, a big rock star, is not actually the main character.  It's really a rather trite story about Sherry, a girl who takes the bus from Oklahoma to LA, hoping to have a singing career, and Drew, the young bartender hoping to make it big with his rock band whom she meets when she arrives.  We decided the best way to describe the movie was uneven.  By the end, we realized it was all meant to be tongue-in-cheek, something of a parody of rock musicals (at least we think it was...).  And there are some funny moments, but in some scenes, especially those with Sherry and Drew, it seems to be taking itself seriously.  So, overall, it wasn't all that funny and it wasn't all that warm-hearted.  Yes, the music is great, especially if you came of age in the late 70's and early 80's, but the songs are all sung by the actors, not by the original artists (again, something that might have worked better live).

Have you seen any good movies lately?

(If you are interested in what we read this week, check out the Monday post on my book blog.)

Sunday, November 04, 2012

The Joys of Support

We got together again last night with our local group of families affected by ME/CFS (you can read about how our group got started here).  This is mostly families who have one or more kids/teen/young adults with ME/CFS and/or related illnesses, though several local adults with CFS have started to join us as well.  As always when we get together, we had a wonderful time!  I know, a party with a bunch of sick people probably doesn't sound all that thrilling, but it is actually a lot of fun!

This group of people have become close friends of ours; they are people I think I would be friends with even if we didn't have CFS in common, though it was CFS that brought us all together.  They are all warm, kind, intelligent, and caring: all in all, a very welcoming and supportive group.  A new local family joined us last night, and they fit right in and felt like old friends by the end of the evening.

My family doctor said she has two other pediatric CFS patients, and she has been trying to convince their parents to call me so they can participate in our local group, too, but so far, I haven't heard from either of them.  Last night, we were all trying to figure out why these families seem reluctant to meet others in the same situation, and we wondered if maybe they think that getting together with other people with sick kids might be depressing; perhaps they think these gatherings are like group therapy, where the kids sit around and talk about how sick they are.

The funny thing is that the truth is completely the opposite of that!  Our family gatherings are social - for some of these kids, the only social events they are able to manage in their isolated lives.  The kids rarely talk about their illnesses, but that's the point: they don't have to.  When they are with other kids with ME/CFS, they know that they are instantly understood - no embarrassing explanations or excuses needed.  They can put their feet up while they play cards or lie on the ground in the middle of a Frisbee game, and everyone else will understand.

So, when the new teen showed up last night, she walked into the family room and was instantly accepted by the other kids and brought into the game they were playing.  The kids talk and laugh and basically act like normal teenagers, which is something that some of them rarely get to experience.  So, in a way, it really is group therapy for them, just not in the way you might think (and shhh!  don't tell them that - they think it's just fun!)

As for the adults, we do talk a lot about ME/CFS, but it's a comforting, supportive kind of talk.  We don't have to worry about making another parent feel uncomfortable talking about our sick kid, like we would in a normal social setting.  We are all dealing with the same issues.  So, we trade school horror stories and treatment advice and doctor recommendations, knowing that everyone else in the room completely understands.

Most of the parents are healthy, but they all understand what it's like to live with ME/CFS.  So, for me, it's a much easier social setting than being at a regular party with "normals."  On the rare occasions that I manage a normal social event, I feel so self-conscious and different. Usually, everyone else at a party is standing, while I am sitting in a corner somewhere, staring into other people's belly buttons (or worse!).  Everyone else is drinking while I sip at my ice water; and I longingly peruse the buffet table, unable to find anything but the raw veggies that I can safely eat because of food intolerances.  But with this group of people, I feel completely comfortable.  They know I can't stand for long, so we all sit.  People bring a dish or two to pass and set them on the table saying, "Now this one is gluten and dairy free, but that one is just dairy free."  It's a very comfortable and comforting social event.

If you have the opportunity to meet others with ME/CFS or related illnesses in your own local area, I highly recommend it.  These friendships are just so enriching and easy.  I found all of these people in different ways, so there are many options for finding others locally.  Here are some ideas:
  • Give your local doctor(s) your contact information, and ask them to pass it along to anyone else they see who has ME/CFS (if you want to proceed more carefully, just give out your e-mail address only).
  • If it is your child who is sick, do the same with school personnel - give your contact info to the guidance counselor or other 504/IEP coordinator and ask him or her to share it with other parents in similar situations.
  • Ask your friends and family to let you know if they ever meet someone with ME/CFS.  I met one of our local group of Moms when she broke down into tears at a vet appointment because her daughter was so sick.  She confessed to her vet - who happens to be one of my closest friends - why she was crying, and my friend suggested she call me.
  • If you are a member of any Facebook groups or discussion forums related to ME/CFS, post a question asking if anyone else lives in your region.  We found several of our local families that way.
  • Check local newspapers and library bulletin boards for notices of ME/CFS support group meetings held locally.  Even if you aren't looking for a formal support group meeting, you may meet someone there who you would like to get to know better.
  • Check with the CFIDS Association - they keep a list of resources for each state which you automatically receive when you become a member.  Several states (NJ, WI, CT, MA for instance) also have active CFS associations with similar resources.  Search for your state name and ME/CFS in a search engine and see what comes up.
Believe me, you won't regret making these connections.  These friendships have enriched our lives - and provided much-needed support to us.  And along the way, we've met some wonderful, amazing people.

Friday, November 02, 2012

Still Here! All is Well...

Sorry for not posting in a while.  Hurricane Sandy kept us busy for a few days, then Halloween, and life is just now returning to normal.

We were very lucky with the storm.  Its center came right through our area in northern Delaware, pretty much a direct hit, but we never lost power and there was no flooding or major damage anywhere in our neighborhood.  We are fortunate to be inland a bit; the coastal towns of NJ and DE really got hit hard, as you've probably seen on the news, and will be digging out for some time.

So, for us, the storm was actually nothing more than a break from our usual routines, a mini vacation of sorts.  Schools - and even college - were closed from Monday through Wednesday, so our college-aged son was home for an extended visit.  Our younger son had a friend sleep over on Sunday night...which turned into a 3-day visit since the governor closed the roads!  Fortunately, he's a great kid, and we didn't mind having an extra boy here.

We spent much of the week just relaxing which was just what we needed.  We played games, watched a little TV, read, ate well, and carved our jack-o-lanterns (mine's the little one)!

Both Jamie and I finally seem to be over the colds that have plagued us for weeks, except for a tiny bit of a lingering cough in both of us.  To be honest, I was really starting to worry about myself because I felt pretty awful for almost a month and couldn't figure out why.  I think now that it was just this nagging cold virus that triggered an extended crash, as they often do.  Fortunately, this one only lasted 1 month instead of 9 months like a few winters ago.  I did end up taking Zithromax for 5 days.  I went to see the doctor on Friday, before the weekend and the storm.  She said she saw signs of the beginning of a sinus infection; my lungs were still clear at that point, but I was worried about developing bronchitis since. like all of us, I am so prone to secondary bacterial infections, due to CFS's immune dysfunction.  I did go ahead and start the antibiotics the next day, and I think that is what finally helped me to kick this.

So, I am finally feeling pretty good again - back to my own normal.  I have even taken 2 walks this week since the storm passed!  Jamie went back to college on Wednesday, and the rest of us enjoyed a fun Halloween night.  We usually dress up together, in some sort of theme, for trick-or-treating.  Craig and his friend were dressed as old men, so Ken and I decided to go as babies/toddlers!  We only went to a few houses with the boys and their friends before they ran off on their own - very different from the old days when Ken had to go to every house with them!  We had fun, and now we have a big cauldron of candy that is mostly off-limits to me (thank goodness) because of my dairy intolerance...though I did go a little crazy last night with the mini Heath bars - they're just so good!!

So, I hope all of you out there in the storm's path are in as good a shape as we are and didn't suffer too much in the storm.  I know many people in NJ, NY, and eastern PA are still without power - if you are one of those, I hope you were able to find warm shelter with friends or family.

 And I hope you had a Happy Halloween!