Disappointed, Again

I had a great plan for today. First, this week is supposed to be my Anti-Procrastination/Catch-up Week - I decided on Sunday to set aside this week to get all the things done that I have been postponing for too long - the phone calls, e-mails, etc. that have been on my to-do list for far too long. And today, I was going to jump into that project. I went to bed last night feeling relatively good (for night-time) and motivated to hit that list today. I've also rededicated myself to trying to lose a couple of pounds and slim down a bit - my sweet tooth has been taking over lately! It's becoming super-hot and humid here in Delaware now, so my plan was to take an early morning walk (i.e. 9 am) before it gets too hot. So, I got up this morning, got dressed in cool, wicking shorts and shirt, ready for my walk.

So what happened?

I have a killer sore throat and a sore mouth, too. I suspect I've got another case of thrush, which crops up periodically ever since my 3-year long Lyme treatment. It's not bad enough yet to look really bad, but these are my early warning symptoms. Of course, the sore throat could "just" be a typical CFS crash, but my tongue hurts, too. So, I am taking it easy and saving what meager energy I have (I do still have to make breakfast for my son and his two sleep-over friends, run to the farm to pick up our weekly veggies today, and make dinner  tonight). I am also taking lots of oregano and olive leaf (both potent anti-fungals) plus extra probiotic.

I should be used to this kind of last-minute change now, used to the disappointment of not being able to do what I want to do. In fact, I even came up with a name for days like this - it's a Plan B day. But, after 11 years, it is still disappointing to have to give up my plans. Despite how bad I am feeling (the aches are creeping in now, too), I am still yearning to take that walk in the sunshine and tackle that to-do list. sigh....

I know, I know. I'm resting.

May 2013 CFSAC Meeting Videos Posted

CFSAC has posted videos from its most recent meeting, held on May 22 - 23, 2013. Here are all the links (copied from an e-mail, so I don't know what the formatting will look like):

CFSAC Spring 2013 Meeting
(I always find the Public Comment periods interesting, and this meeting also included - for the first time - public Q&A sessions)

Welcome & Call to Order - Day 1,  May 22, 2013, 9:00 - 10:30 AM

Public Comment on Day 1, 10:45 AM - 1:00 PM.

Approve Prioritized Recommendations List - Day 1, 1:00 - 1:30 PM.

Determination of Medicare Coverage of Test and Treatments - Day 1, 1:30 - 2:30 PM.

Public Question & Answer on Day 1, 2:45 - 3:15 PM.

Committee Discussion and Plans for Day 2, 3:15 -- 5 PM.

Opening Remarks on Day 2, 9:00 - 10:15 AM.

Health Insurance Marketplace - Day 2, 10:15 - 11:00 AM

Public Comment on Day 2, 11:15 AM - 12:15 PM

Public Question and Answer on Day 2, 1:30 - 3:00 PM.

Committee Discussion on Day 2, 3:00 - 3:30 PM.

Committee Discussion (Part #2) on Day 2, 3:30 - 5:00 PM

Mixed Feeling About Reunions

I've been on an emotional rollercoaster lately. The silly reason? A bunch of my old friends are all going to our college reunion this summer. One friend started a Facebook event to see who was planning to attend, and I watched the enthusiastic replies pile up with envy. Literally dozens of the women who were in my sorority are all planning to go back to campus in July for this summer's reunion. The two colleges in town hold a reunion every summer, but this is the 25th for the girls who were one year behind me, including many of my close friends.

Right from the start, I felt like there was no way I could go to the reunion. For starters, I went to college in the middle of nowhere in the very northern reaches of New York state, north of the Adirondacks and not too far from the Canadian border. So, even if (hypothetically) I could afford a plane ticket, the nearest airport is still a 3 hour drive away from our college town. The logistics tortured me: I could fly into Syracuse, rent a car...no then I'd be too worn out by the time I got there. OK, I could get a ride with a friend from Syracuse...no, then I wouldn't have my own car so I could go rest whenever I need to. And even if I could figure out how to get there, how on earth would I manage the many hours on my feet, as all my friends  - there for a wild girls' weekend - walked into town and stayed out until 2 am? I considered and discarded various options and finally just gave up.

But as I watched the excitement build among my friends, I felt so left out. How do I explain to all of them why I can't make it? Just telling someone you have a chronic illness doesn't cut it - how can anyone possibly understand all the restrictions we live with every day? Many of them are staying in a group of townhouses they rented together.

Then I started chatting with a friend of mine from the sorority who graduated the same year as me. We've become even closer recently, since finding each other on Facebook. She said she was bringing her daughter with her to alumni weekend and that she can not drink alcohol because of medical problems either. She got me thinking - here's someone who's going to go back but isn't going to do the wild weekend thing....

I finally came up with a workable plan and made reservations! Our whole family is going up there, with our camper, making it into a mini vacation (which we desperately need anyway). I reserved a spot at a campground 25 minutes from town (in the lovely Adirondack foothills). My husband will do all the driving, I'll have my comfy camper to rest in when I need to, and I can make a trip or two into town to see my friends for a limited, manageable amount of time.

I'm so excited to finally be going, but a part of me is still worried about what it will be like to stick out like a sore thumb. The thing is that I was a bit of a party animal in college! I had crazy energy back then - got a chemical engineering degree, was president of my sorority, and spent my weekends going wild with my friends. I drank way too much back then, danced for hours, sang/screamed until I was hoarse, and stayed up all night.

Almost all of them - except that one friend - are going to alumni weekend on their own, without families, for a "girls' weekend." I know they'll be ready for a wild weekend of drinking, dancing, singing, and having fun. I used to be the life of the party, ready for anything. This time, I'll only be able to manage a couple of hours at a time, no alcohol, no dairy (the wine and cheese party Friday should be fun!), no staying up late. Going downtown to our old hang-outs is definitely out - I'll be lucky if I make it until 9 pm!

My 30th high school reunion is also this summer, and I am almost relieved that I definitely can't go to that one! We will be away on vacation at that time. I did go to my 20th...just months after finally getting a diagnosis for my mystery illness. That was definitely strange. I wasn't even comfortable with having a chronic illness yet myself, so explaining it to people I hadn't seen in 20 years was just plain weird. It's hard to know what to say when someone gives you a big hug and says, "You look great! What have you been up to?" Uh...lying on the couch and getting blood tests?

Ten years later, at least I am more comfortable - and more happy and settled - in my life with chronic illness, so that helps. The other thing that helps is social networking. Many of the old friends I will see at my college reunion already know I have CFS because we've been in touch on Facebook. Of course, they don't understand the extent of it or how restricted my life is. In fact, I wished an old college friend a happy birthday yesterday, and she replied how much she enjoys my Facebook posts and how busy I am! Um, yeah. How do you respond to that?

So, I just have a lot of mixed feelings. I am very excited to see everyone again and to show my kids around my old college campus and the town. That one friend and I both feel better knowing the other will be there, so neither of us will be the only one not partying - she told me, "It will be wonderful to have a fellow-mellow-sober alumni to share the experience with!" Love that. So, I am mostly excited, but I know it will be tough to tiredly head back to our camper when all of my friends are just getting started for the night. I'm also not looking forward to the explanations. There's a fine line between helping an old friend understand and not making others feel uncomfortable or pitying.

But I am going! That alone feels like a triumph.

Well, I feel better just talking it out - thanks for listening!

(P.S. Just to save you the trouble, I generally only "friend" people on Facebook that I know in person, close friends and family - otherwise, it just becomes too much for me to keep track of. But I'd love to get to know all of you here on the blog, so feel free to leave a comment!)

Movie Monday

Well, we made it through the first week of Craig's post-op recovery. As I mentioned in my last post, he is doing great - much better than expected - and avoided a CFS crash completely. A miracle!

He is still mostly immobile, though he can get around the house a bit on crutches. So, we have been watching a lot of TV, but not as much as after his last two surgeries. Since he's feeling so much better, he's been mostly playing video games with his brother and some friends who've visited.

So, we watched just one movie last week, a classic 80's comedy, Animal House. Believe it or not, I was a teenager in the early 80's and had never seen it! It was, of course, exactly as expected - goofy, sometimes raunchy, comedy. Lots of fun watching John Belushi's antics and laughing at the craziness of the Delta house. Funny thing is that there was a fraternity on my college campus EXACTLY like the fraternity in Animal House. They used to throw furniture and TVs out of the third floor windows for fun (and that was one of the milder things they did). So that was a fun distraction.

Mid-week, a DVD we'd requested from the library finally came in, the fourth season of In Plain Sight. Since there's only one copy of each season in our entire state library system, and there is usually a waiting list, we are trying to watch the entire season in one week! Fortunately, the kids like this great series about the Witness Protection Program as much as my husband and I do, so we've been flying through the episodes. The show has interesting cases each episode but also a great sense of humor. We've set everything else aside for the time being, though my husband is very eager to start watching one of his Father's Day gifts, season one of The Game of Thrones!

Oh, and Ken and I did have one hour to ourselves when the boys had friends over this weekend, so we watched the pilot of Graceland, a new TV show about a house in southern California filled with undercover government agents from FBI, DEA, and Customs - seems like a great show so far!

Have you seen any good movies or TV shows lately?

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

Post-Op Recovery

Well, I think I am finally recovered from my son's surgery - ha ha. I know that sounds strange (maybe not to you guys), but the two-day ordeal at the hospital took a lot out of me. This week has been a lost cause - I've been wiped out and using all my limited energy to take care of him during the day. I felt good on Wednesday and thought I'd finally gotten past it, but then I woke up Thursday feeling awful - very achy and sore throat. I had used my newfound energy on Wednesday to go to the grocery store AND to my library's monthly noon book discussion (I know, I know - I am living a wild life here!) Guess that was too much for me. So, once we got back from the doctor's office yesterday, I rested the rest of the day. I've been taking long naps in the afternoon. Hopefully, I'm past the worst of it now.

As for my son, he is doing great, and we are amazed - and grateful! The difference between this knee surgery and his first two is like night and day, and the odd thing is that this was the more extensive one. The surgeon actually had to make a full incision; the first two surgeries were just arthroscopic. The first surgeries caused a severe CFS crash each time, lasting 3-4 weeks. His CFS is usually mild and completely controlled by Florinef, so we were surprised when he was so totally wiped out for a month afterward.

So, why is this time different? I think I've figured it out.

All three times, we printed this great article on surgery and CFS and handed it out to the surgeon and anesthesiologist, and all the doctors were very accommodating each time. They were familiar with various types of Orthostatic Intolerance (OI), they chose anesthesia that was better for someone with OI, and they made sure to give him a saline IV.

This time, however, his surgery was delayed for 6 hours and he ended up having to spend the night in the hospital. This inconvenience turned out to be the best thing that could happen! They kept him on a saline IV all night long, and I'm pretty certain that is what made the difference! Our older son used to get weekly saline IV's to treat OI, so we know what a dramatic effect they can have on someone with OI. The anesthesiologist also explained to me this time that ALL types of anesthesia have some vaso-dilating properties (very bad for someone with OI as dilating the blood vessels makes it even harder for us to circulate enough blood to brain and heart), so they chose the least vaso-dilating but couldn't avoid it altogether. I suspect that the extra saline IVs not only helped to increase his blood volume but also helped to counteract the vaso-dilating effects of the anesthesia.

So, after the first two surgeries, he was totally wiped out for a full month - just lay on the couch, watched TV, and didn't have the energy to get up even when his knee pain began to subside (you know, the basic CFS crash). This time, by the second day post-op, he was sitting up, talking animatedly, and playing video games. He even had a friend over just a few days post-op to play games with him! Even better, because he isn't crashed, his pain is much better, despite the fact that it was more extensive surgery and should be hurting more than before. He's already started to reduce the dose on his pain killers; after the first two surgeries, he stayed on the maximum dose for two full weeks.

All of this is just amazing to us...and wonderful! Lessons learned: not only to share important information with the doctors ahead of time, but request extra saline IV's (at least 2 liters) - the lost sleep due to the overnight in the hospital was more than made up for by the extra saline. Now I just need to recover - maybe next time we'll ask for a saline IV for the patient's mom, too!

Movie Monday 6/10

Whew - a long and difficult week here - school ended on Thursday for our 15-year old son, and he had knee surgery on Friday. I knew it would be a long day for all of us, but it turned out even longer than we'd anticipated - a real marathon for someone with ME/CFS! He was scheduled for surgery at 11 am, so we got to the hospital at 9 am, as directed. There was some kind of emergency involving our surgeon, and he never got to our son until 5 in the evening! By then, he'd been without food or water for almost 24 hours, and we were all exhausted. He ended up spending the night, and we had another long day at the hospital on Saturday, trying to get him discharged.

So, not much time for movies last week, but my husband and I watched a DVD Thursday night while our sons were out with friends:

We watched The Oranges, starring Hugh Laurie (of House fame), one of our favorite actors. This is a somewhat quirky movie, about two families in East Orange, NJ, who have lived across the street from each other for decades and are close friends. Close that is, until the husband in one family (Laurie) has an affair with the 24-year old daughter from the other, which sends all of them into chaos. There are lots of funny moments in the movie, but it is also sincere and heartfelt, delving into issues of family, friendships, and happiness. It's fun, lively, and entertaining with a talented cast.

Have you seen any good movies lately?

Movie Monday 6/3

Another week gone by without much blog posting - so sorry for that! Things were crazy busy here last week. My oldest son came home from college (victorious after a great freshman year!), and our house was filled with college students and friends old and new all week. It's been a lot of fun....but also lots of cooking for me! Today, he started his one class for summer session (commuting to school every day for 2-3 hours of Calculus), my younger son has a hectic week of final exams, and I have my last few hours of quiet solitude until September! Friday, my younger son has his third (and hopefully, last) knee surgery. So, another busy week.

We did have time for one movie last week:

Saturday night, my sons had friends over for a movie night in the basement, so Ken and I watched Promised Land, a fairly new release starring (and written by) Matt Damon and John Krasinksi (of The Office fame) about a current hot topic, natural gas and fracking. Damon plays Steve, a guy who works for a giant natural gas corporation. His job, along with his partner, played by Frances McDormand, is to travel to small towns where there are natural gas deposits and convince all the land owners to lease portions of their land to the company so they can drill there. They travel to a rural Pennsylvania town and find they have some opposition: a high school science teacher, played by Hal Holbrook, who speaks out against the risks of fracking, and an environmentalist, played by Krasinksi, who tells the townspeople how his own family farm was ruined by polluted water caused by fracking. From this, it sounds like simple good vs. evil, with Steve respresenting the evil, greedy corporation, but he actually loves his job and believes he is helping these small farming communities to survive by bringing them some much-needed income; he saw his own farm town in Iowa die out after a local factory closed. And, there is a pretty love interest, of course, played by Rosemarie DeWitt whom both Damon's character and Krasinsksi's character are interested in. As you might imagine from this description, it is somewhat political, as this is such a hot topic right now, though the film remains fairly neutral and tries to present both sides. It was an interesting movie, with a fabulous cast that was fun to watch. Not a great movie, but good entertainment for a Saturday night.

We've also been catching up on TV shows with Jamie since he got home - he and I watched the end of the season of White Collar, he watched the finales of The Office and Grim (season finale), and the whole family has been catching up on missed episodes of Revolution.

Have you seen any good movies or TV shows lately?

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