Monday, January 27, 2014

Movie Monday 1/27

Despite our exhausting week and recovery weekend, we didn't watch a lot of movies. Since my 16-year old son had knee surgery on Thursday, we let him choose what to do or watch, and he's not a big fan of movies. Even post-surgery, he gets impatient with being inactive and doesn't like like to just "veg," so he would rather play video games. However, on his first day home, he was exhausted enough to sit still for a movie with us, so I chose something light and fun, to perk us all up:

We finally got to see Despicable Me 2! I just love those minions (wish I had some of my own!). This sequel features Steve Carell in the lead role again as Gru, the now-reformed super-villian who is living a quiet life in the suburbs with his adopted daughters. The Anti-Villian League recruits Gru to help them with a particularly troubling case, and he meets a female agent named Lucy. Ah, the plot doesn't really matter - just like the first Despicable Me movie, this one is all about fun and laughs, with plenty of cartoon action, romantic sub-plots, and very mild suspense. And the minions! The scene at the end when the minions are the Village People is the best! This light movie was perfect for us, and it lightened all our moods and inspired lots of hearty laughs - highly recommended during your next down day for some laugh therapy!

On TV, we have been watching Almost Human (new show and excellent), Arrow (my sons' favorite), our old favorite Bones, plus the sitcoms that my youngest loves (two current faves are Brooklyn 99 and The Goldbergs). With our oldest son, we also enjoy Elementary and The Following. My husband and I kind of have all of our own favorites on hold while he is home from college. I hope the episodes we missed are still On Demand.

Have you seen any good movies or TV shows lately?

Saturday, January 25, 2014


My sons and I are all recovering this weekend. My youngest son had knee surgery (#4) on Thursday, so he is recovering from that. I crashed just from spending most of the day at the hospital with him!  I thought I was doing better this morning and planned to go to the grocery store, but my husband wrestled the list out of my hands and sent me back to the couch! He was right - within a couple of hours, I realized I was still achy and had a sore throat. Sometimes, he knows me better than I know myself. Even after 12 years, I still tend to overestimate what I can do. I am lucky to have him looking out for me!

My oldest son is still struggling to fully come out of the bad crash that started January 2. Actually, he has had a rough time all last semester. He decided to drop his winter session class and just rest and recover, but now there are only two weeks left until spring semester starts. He is definitely doing better, but it doesn't take much to push him over the edge again. I think going to PT yesterday (for a leg injury) was probably why he woke up this morning feeling bad again. He is doing better now, after a nap today and lots of rest. He had to cancel plans with friends to go to a concert today, so he was disappointed about that. He and I are both doing better as we address the yeast issues, but we are getting fed up with the sugar-free diet!!

We are hoping our youngest will recover from his surgery pretty quickly. It turned out to be minor and very quick (he was only under anesthesia for about 15 minutes), plus we asked for 12 hours of post-op saline IV to counteract the effects, and he ended up getting more like 20 hours! Fingers crossed. I will keep you up-to-date on how well our strategy works.

So, that is the news with us this weekend - lots of TV and movies and resting (though now I am wiped out again after making dinner). Hope you are having a good weekend!

Tuesday, January 21, 2014

Movie Tuesday 1/21

Still very busy and very hectic here, now in the middle of a huge snowstorm! So much for getting anything done this week before my son's surgery on Thursday. This storm is so bad that the area hospitals have cancelled all surgeries for tomorrow - hoping it is cleared up by Thursday. The good news is that I am feeling better - back on Diflucan and frantically gathering information on various types of probiotics, hoping that switching to a new one might help. Several people have recommended Prescript Assist, so I ordered some.

We spent our weekend at my mom's condo in a ski resort so my son could celebrate his birthday (and his freedom before knee surgery) snowboarding with his friends. I mostly stayed on the couch in front of the fire! We did enjoy a couple of movies:

My husband and I watched The Way Way Back on Saturday night, and we both really enjoyed it. It's a coming-of-age story with a large dose of family dysfunction. The main character is a a 14-year old boy named Duncan. As the movie opens, he is riding in the back of a vintage station wagon (what we used to call the way back when we were kids!), reluctantly on the way to spend the summer with his divorced mom (played by Toni Collette), her boyfriend, Trent (played by Steve Carell), and his snooty teen daughter, Steph. Trent has spent summers at the same beach house (looks like Long Island to us) since he was a kid, so this is all his territory. As the cute next-door neighbor girl explains to Duncan, "this place is like spring break for adults."  Duncan hates Trent (with good reason) and is miserable watching his mom and Trent and the other adults go wild, until he stumbles into a job at a local water park, where he meets happy-go-lucky Owen, an adult who never grew up. There is a vintage feel to the movie (they joke that the water park hasn't changed since the 80's) that at times reminded me a bit of Adventureland (which I loved). The movie contains both drama and comedy and was very enjoyable.

Sunday night's movie, which we watched with our 19-year old son, was less of a success! We watched an older sci fi movie, Solaris, starring George Clooney. We all liked the premise: Solaris is a space station orbiting a strange planet where weird things have been happening. Clooney is a psychologist on earth who is sent into space to investigate what's been happening on Solaris. What he finds there is even stranger than expected and impossible to explain. It's a fascinating concept - even my son agreed that the book it is based on was probably very good - but it didn't have enough action for my son and husband. I liked it - my only complaint was that it is filmed with a lot of very dark scenes, dark both thematically and cinematically, so that it was sometimes difficult to see what was happening. But I thought it was thought-provoking and interesting. If you don't care much for action and enjoy sci fi or psychological thrillers, then you might want to give it a try. Incidentally, we never did quite figure out whether we'd watched it before, years ago. Brain fog and getting older can be beneficial at times!

Have you seen any good movies lately?

Sunday, January 19, 2014

Struggles and Challenges

I just thought I should pop in to let you know I am still here! I apologize for the lack of blog posts lately. I have so many of them planned in my head but no time or energy to write. Our family has had a rough start to the new year.

My oldest son, who also has ME/CFS, as well as Lyme disease plus two other tick infections, was severely crashed from January 2 until just a couple of days ago. He has been incapacitated, stuck on the couch, and feeling pretty down. He had to drop the Winter Session college course he'd planned to take, and he still needs to make up his Calc 2 final from last semester. Thankfully, he is feeling a lot better now, as of a few days ago, so we are hoping that bad period is behind him, and he can get back to his normal baseline (symptomatic but able to function, taking 3 college classes at a time and living on campus when school starts again in February).

Then about a week ago, my youngest son felt something pop in his right knee, where he'd had three previous surgeries to repair cartilage damage. He says it feels just like before surgery #2, when a chunk of cartilage broke loose and was floating around in his knee. So, we saw the surgeon twice and took him for an MRI, and he is now scheduled for knee surgery #4 this coming week. The MRI didn't show any obvious damage, and it looks like the last cartilage repair is still intact, so the surgeon is hopeful this will be a simple procedure to just remove the loose piece (which seems very small) arthroscopically. Of course, there is no such thing as minor surgery for someone with ME/CFS and OI! We did learn something from those previous surgeries, though, so we've requested a full 12 hours of IV fluids post-surgery, even though this is normally a quick out-patient surgery. We are hoping this will prevent the month-long crash he experienced after the first two surgeries. Fingers crossed!

And then there's me. I had a rough week, with badly flared up symptoms and a lot of "must-do" activities that kept me from resting. My son's 16th birthday was this week, my mom came to visit for a few days, my neighborhood book group met, and then we packed up and went away for the weekend. Whew.

I think my recent worsening is due once again to yeast overgrowth. I am really frustrated by this. I went off the Diflucan a couple of weeks ago and have been struggling ever since. Every few days, my symptoms return - sore mouth, thrush on my tongue, terrible aches all over - and I need to start taking Diflucan again. My prescription is almost out, and I keep trying to get off it, but the yeast is obviously still not under control. If I have the tiniest bit of sugar, it flares up again. So, I will try to get in to see my doctor again when we get home - in between taking one son out of state to see his Lyme doctor and the other's knee surgery! Sometimes, it is a real challenge taking care of myself, as a sick mom with kids who have their own medical problems.

I am resting now. We are staying at my mom's condo in a ski resort (they aren't here) so that my son can celebrate his birthday snowboarding with two friends (the surgeon gave him the OK!). They are out having fun in the snow, and I am lying on a comfy couch under a fleece blanket, with a cup of herbal tea and a nice gas fire by my side. There is something so relaxing about just being away from your own home, filled with so many reminders of all the stuff you should be doing! Of course, the packing and unpacking and travel is tiring, but for now, I am getting some much overdue least until hungry hordes of teen boys come in from the slopes for dinner!

So, it looks like this week will be just as busy, but hopefully I will feel better. If anyone has additional tips for me on the yeast overgrowth, I am open to anything! I am still doing everything listed on my post on yeast but am still struggling.

Hope you are having a relaxing weekend!

Friday, January 10, 2014

Air Travel with ME/CFS

Or maybe I should call this post The Traveling Circus. I used to pride myself on being low-maintenance, but now I have to carry so many supplies with me and stick to such a careful routine that traveling is a real pain. Our preferred mode of travel is by car (preferably with our pop-up camper in tow!) - in our own vehicle, I can bring along all that I need and we can stick with our own little routines (like my nap time after lunch). Sometimes, though, like just recently during the holidays, we need to fly to visit family.

I thought I'd share my own strategies for travel - and especially air travel - since I've gotten pretty good at it over the past 12 years. I try to keep my carry-on bag as light as possible, though it is usually stuffed full.

Nap/Rest As Much As Possible

First, there are my napping/resting accessories:

I carry a backpack which is the easiest way to carry stuff through an airport, though my husband needed to carry my pack for me several times this trip. Inside the backpack, I stuff a very thin fleece blanket, a small neck pillow, and this time, I added an extra inflatable U-shaped neck pillow (all four of us have these now - they are awesome and easy to bring along! Here's the one we like and a cheaper alternative). The fleece blanket I usually fold up into a small rectangle and use as a lumbar support on airplane seats - even if I were healthy, those seats are uncomfortable, especially when you are 5'1" and they are designed for 6' tall males! I could also use it if I got cold, but that is unlikely - since ME/CFS, I am usually too hot!

The neck pillow(s) I use when I nap, which I have to do even more frequently on a long airplane/airport day. I also bring an eyemask and earplugs (for even better noise reduction, try silicone earplugs). Once the plane is in the air, I usually put all that on, lean my seat back, put my feet on top of my bag, and do my best to rest/nap as best I can. My sensory deprivation kit! The pillow and blanket pretty much fill up my backpack, but they are lightweight.

Treat/Monitor Orthostatic Intolerance

The other group of items I carry in my backpack (besides a lightweight paperback or my Kindle) are related to Orthostatic Intolerance (OI). In addition to too much exertion going through airports, the other major danger in a day of air travel for someone with ME/CFS is even worse OI than usual, brought on by air pressure changes and being upright too much (if you have ME/CFS and think OI doesn't apply to you - it probably does. Over 97% of ME/CFS patients have some form of OI, basically an inability to maintain a steady blood pressure and heart rate due to low blood volume and autonomic nervous system dysfunction).

I wear these lovely-looking kneesocks (they come in much nicer styles now, like the ones at this link). They are compression socks (you can also buy compression tights; wearing compression shorts around the pelvis area also helps). People with OI have difficulty keeping the blood circulating properly to heart and brain - it has a tendency to pool in the lower extremities, especially when upright - so the socks or stockings help quite a bit. You can buy them in any drugstore or online.

Other items, like the water bottle, are related to hydration. While it's important for anyone who flies to stay well-hydrated in that dry environment, it is critical for those of us with ME/CFS. Part of OI is not being able to hold onto fluids, so we need lots of fluids and lots of salt. Post-9/11 restrictions have made this more difficult! I used to bring a full water bottle and a large can of V-8 on planes with me (my son brought Gatorade), but now you can't bring liquids greater than 3 oz. through security. So, I bring my empty bottle, along with a small bottle of Elete, salt water drops that you add to your water (Elete is sold in tiny bottles that would meet airport regulations; I brought an almost-empty bottle - I buy mine on amazon) and fill my bottle with water from water fountains or just buy a couple of bottles of water once I am through security. My son does the same, plus he adds electrolyte solution (we like GU Brew tablets). I still look for V-8 in the airport before I fly or order tomato juice or Bloody Mary mix (without the alcohol) on the plane - both have lots of sodium plus potassium, too.

And finally, I wore my heart rate monitor while walking through the airport. It was enlightening, as always! I found that if I was carrying my backpack, my heart rate went up past my AT pretty quickly - that's when I handed it over to my husband to carry for me (I also had my laptop in my pack this trip which added too much weight for me - lesson learned).

Request Wheelchair Assistance

(added June 2023)

Thanks to many treatments (including treating OI), I am normally able to manage the walking that comes with air travel. I try to arrive at the airport early enough that I don't have to rush, I wear my heart rate monitor and stay within my limits, and I try not to carry too much weight. However, even with all that, air travel involves a lot of walking and standing in lines, all of which can cause a post-exertional crash for those with ME/CFS and long-COVID.

This past January, my husband and I had to fly at the last minute to Texas for a family funeral. This meant two connecting flights each way, with a full day of travel there and back. At the time, I was not in very good shape and knew I couldn't tolerate that much walking and standing. For the first time ever, I requested wheelchair assistance.

What a game-changer! In all three of the airports we flew through, the people who assisted me were incredibly kind and helpful. Our first flight left out of the very last gate in a very long concourse, and I never could have walked it myself at that time without crashing. On the way back, our first flight was delayed, leaving us less than 20 minutes to get from the end of one concourse in Atlanta (huge airport) to the end of a different concourse; we would have missed our connection without the assistance.

Plus, I learned about a hidden bonus with wheelchair assistance: no standing in lines! At security, we were whisked to the front of a line and through very quickly. I opted to walk onto the plane on my own, but that involved a lot of standing, too, and the assistant will stay and push you right to your seat, if you need that. Since standing still can cause a crash even faster than walking (again due to OI, with blood pooling in lower extremities even faster when you're not moving), this is a very important benefit.

Don't be afraid to ask for the help you need! It was a very positive experience for me.

So, those are my air travel tips. It all helps, though a long day of air travel is still exhausting. With all of these aids, it is easier and takes me much less time to recover.

Do you have any air travel tips to add to my list?

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Monday, January 06, 2014

Movie Monday 1/6

Well, between more holiday days last week plus snow days when we returned home, our family had lots of down time together, so we watched a couple of good movies. As always, with two teen boys and a husband, they are all suspense/thriller/action movies, but if you like those these were both good:

Friday night, my younger son had a friend sleep over, and my husband wanted to watch his alma mater (Oklahoma State) play football, so my older son and I picked a mystery/thriller from Amazon Prime. We settled on an older movie, Copycat, about a serial killer. Holly Hunter does a great job as the SF detective trying to catch an elusive serial killer, and Sigourney Weaver plays a serial killer expert who has become a recluse ever since being attacked by a serial killer who'd read her books. It's a tense thriller filled with twists and turns. And, though it took me a while to recognize him, Harry Connick, Jr. plays the killer who attacked Weaver's character - you have never seen him so ugly or creepy! We both enjoyed it.

Saturday, our younger son went to the movies (you can see who has the active social life around here!), so the rest of us watched Elysium, a sci fi action film that my son has been eager to see. It takes place in 2154, when the earth is a mess and its wealthiest, most powerful citizens have left the planet to live on Elysium, an idyllic space station orbiting earth. Anti-immigration laws prevent the poor masses from coming to Elysium (ah, perhaps a bit of a political statement here?). Matt Damon plays an Average Joe who dreams of someday getting to Elysium with his childhood friend, Frey. The plot was unique and suspenseful, the acting good (Jodie Foster also stars as the evil Secretary of Defense on Elysium), and the movie is filled with nonstop action.

Have you seen any good movies lately?

Thursday, January 02, 2014

Happy New Year 2014!

I am home!!! Ahhh....

We had a good trip to visit my father-in-law in Oklahoma, but I am so happy to be back in my own home. My father-in-law keeps his house at 78 degrees F year-round, so we all sweated through the week! My oldest son and I are always hot because of difficulty regulating our temperatures since CFS. At home, we usually set our thermostat at 65 - 67 during the day and 63 at night, so staying with my FIL is a major adjustment. Even when it is 20 degrees outside (as it was one day this week), we are all in shorts and t-shirts. And the funniest part? We talked my FIL in turning it down a couple of degrees, to 76, and he kept complaining he was cold!

He is 88 years old and lives alone, so it is quiet and low-key when we visit, but he normally eats peanut butter sandwiches and canned goods, so I try to cook a lot while we are there. This time, I made 3 big meals and froze left-overs for him. Try standing over a hot stove in a 78 degree house! Not good for OI!

The biggest problem I encountered this week, though, was that I got bronchitis. The very first morning we were there, I woke up with a KILLER sore throat and congestion. For me, that pattern always ends with bronchitis. Normally, it takes a week or two to get to that point, but this time, I was coughing within 2 days, and my chest felt like it was in a vise. I self-diagnosed and immediately started Zithromax (thank goodness I had thrown some in my medication bag when I packed!). Thankfully, within 12 hours, I started to feel better and the pressure left my chest, so by yesterday, I was in good enough shape to fly home (a long 8-hour day of airports, airplanes, and car rides).

On the downside, you may recall that I just spent months battling yeast overgrowth. I had finally gotten it under control, with Diflucan, supplements, and a no-sugar diet, just in time for Christmas so that I could indulge in a few sweet treats. So, now I am back on antibiotcs, and the thrush is back in my mouth! I am still on Diflucan and all the rest and am now back to the strict no-sugar diet. And I just discovered that my cough drops contain sugar. sigh....

Anyway, it is a new day and a new year! I absolutely love this time of year. My natural optimism shines through with thoughts of all the promise and opportunities of a fresh new year. I won't have much time to myself until next week - my son and husband are at school and work today, but there is a big snow storm predicted for tonight which means everything will be closed tomorrow here in Delaware. But, next week, I will take a look back at my progress toward goals in 2013 and new goals for 2014.

Here's to a Happy and Healthy New Year!

Celebrating New Year's Eve with my son in Oklahoma