Thursday, January 31, 2013

Approved for Social Security Disability

People keep asking me whether I have heard back yet, since my final hearing on Social Security disability back in December.

Yes, my letter came in the mail a couple of weeks ago: "Fully Favorable Decision."

It is a bittersweet success, though, which is probably why I haven't said anything. I have very mixed feelings about it. I was approved for just 3 years' back benefits with no on-going benefits. It's a long story, but the bottom line is that it came down to making a choice between an almost-certain "no" or a good possibility of a "yes." My husband and I agreed with my lawyer that something would be far better than nothing.

And that strategy worked - I was approved. But it still stings that I wasn't able to ask for or get what I really deserve - back benefits for 11 years plus on-going benefits.

So, yes, I was approved - yay.  Now we wait another 30 days to find out how much, then another 30 days to get a check. We have no idea how they'll calculate this, since I made a good salary as a consultant 13 years ago, before I got sick, and very meager earnings since then freelance writing.

I do highly recommend hiring a lawyer to take you through the entire process. I doubt very much I would have won without him; his advice was very helpful every step of the way and his office handled a LOT of the paperwork, faxing, etc.. The way it works is that you don't pay anything unless you get approved; then the lawyer gets a small percentage of your benefits.

Monday, January 28, 2013

Movie Monday 1/28

It's been a while since I wrote a Movie Monday post because I can't get my family to watch any movies with me! They have all been into various TV shows On Demand, on Amazon Prime, on DVD, and on Hulu. Let's see, we've been watching Arrow, Firefly, Dexter, Bones, Elementary, Sherlock, and The Following.

But this weekend, we took the kids and two friends up to my mom's house in the Poconos for snowboarding to celebrate our son's 15th birthday. While the kids were out snowboarding in the evening, Ken and I finally had a chance to watch a movie:

We watched The Rum Diary, starring Johnny Depp.  It was good but a bit strange. We didn't completely understand what it was about until the closing credits!  It turns out it is based on a true story of a New York reporter (Hunter S. Thimpson) who heads to Puerto Rico in 1960 and takes a job with a small newspaper there. As the title suggests, he likes to drink...a lot! So, the movie follows his drunken escapades around the island with fellow reporter Sala, but there is a lot more to the story under that veneer. He meets a wealthy American named Sanderson who is involved with all kinds of illegal activities. He gets pulled into it all for a while, until his reporter instincts kick in and he finally finds a way out.  It was more somber than we both expected, though it has a few funny moments. We both enjoyed it. Depp does drunk and disorderly so very well!

Have you seen any good movies lately?

Tuesday, January 22, 2013

My Health Goals for 2013

I haven't been posting much here lately. For us, the hectic holiday season seems to last right through February. We make it through Christmas and New Year, then quickly move onto Craig's birthday (the celebration often lasts for 2 weeks!), then Mardi Gras (a major holiday in our house) and my niece and nephew's birthdays in Connecticut. Then, we can take a breath!

Anyway, I posted a couple of weeks ago with a look back at 2012 and promised to write about my goals for 2013. As I said in my previous post, I am a data freak, and I also really like setting goals! No, really, I find goals inspirational. They aren't resolutions but specific measurable goals. I used to set my goals the first week of the year and then forget all about them until the end of the year when I'd be disappointed in myself for not doing what I wanted to do....again. Then, I learned to take those broad goals and set smaller, measurable objectives to support them (it's actually something I used to teach companies to do with environmental management). The key for me is that I track my progress against my goals each week. That probably sounds like a lot of work, but I found that it only takes a few minutes and it keeps me on track. Then, by the end of the year, I've actually focused on the things I wanted to focus on. And that makes me very happy.

Of course, CFS gets in the way, and my tendency to over-commit is still there, in spite of 11 years of illness! But, this process works well for me overall. So, I have lots of small, measurable goals (too many, I'm sure!), but I'll just focus on the more health-related ones here. Almost all of these are goals I also had last year that I want to continue to work on.

I have a group of Relationship goals, which do actually relate to health. Close, healthy relationships are good for me, and eliminating the stress of poor relationships is critical. So, some of my goals include:
  • Meeting my husband for lunch once a month
  • Date night with my husband once a month
  • At least 1 overnight getaway with my husband during the year
  • Do something fun with the kids at least 4 times a week 
  • Call my mom once a week
  • Get together with friends once a week
CFS certainly makes it more challenging to find time alone with my husband. It is just easier for me to stay home most of the time!  But we did better last year (i.e. date night 67% of the months) than the year before (date nights only 25% of the months), so we are making progress, and I will try to do even better this year. The goal to do something fun with the kids is an important one: now that they are older, it is too easy to end up all plugged into our own various electronic devices. I have to make a conscious effort to play a game with them or do something else fun. At first, I wasn't counting TV time, but by evening when we are all together, we are usually pretty wiped out, and I realized that enjoying a TV show together does count - I know lots of families with teen kids can't even manage that. I did quite well at getting together with friends at least once a week last year (94%!), and that helps my emotional well-being and mood very much!

Enjoy the Outdoors
Nature and the outdoors are very important to me. Even though CFS has greatly reduced my outdoor activities, I still make an effort to do what little I can because I find being outside is replenishing to my soul. Like supportive relationships, spending time outdoors helps me to keep stress down and increase the joy in my life. Some of my goals include:
  • Spend at least 10 minutes a day outdoors (even if it is lying on my deck wrapped in blankets!)
  • Go hiking at least once a month
  • Go camping at least 3 times a year
I feel so much better when I spend time outdoors, but I only managed it 20% of the days last year. I suppose every day is probably too tough a goal, but I want to keep trying. "Hiking" is loosely defined; I did a slow walk on level ground with two friends this morning for about 25 minutes (wearing my heart rate monitor)...that counts! And we only went camping twice last year, though "one" of those times was a 3-week long road trip. This year will be challenging, with our oldest son now in college.

Some of my specific health goals include:
  • Try new treatments for Jamie and I
  • Walk at least 3 times a week
  • Do gentle yoga for at least 5 minutes, at least 3 times a week
  • Light muscle-building, at least 2 times a week
  • Rest when symptoms flare
Last year, I was totally focused on Jamie - we tried dozens and dozens of changes and new treatments, and some of them worked wonderfully to help get him functioning again. This year, I need to start thinking about myself again. I think I may try a slightly higher dose of low-dose naltrexone, for one thing, and perhaps going up on my Imunovir dose which is currently lower than recommended.

The exercise goals are more modest than they appear, and all of them are predicated on not causing a post-exertional crash. My walks are usually slow, easy walks around my neighborhood, about 25 minutes, wearing a heart rate monitor and staying below my AT the entire time (beta blockers allow me to do that). I have discovered that gentle yoga while sitting or lying down helps me even on bad crash days - the worse I feel, the more I focus on lying down, meditative-type yoga. And on any day, the stretching feels good, especially first thing in the morning. The muscle-building is likewise done very slowly and carefully, wearing a heart rate monitor and staying below my AT. I have found that breaking it into tiny increments works best. So, I might do 10 push-ups, then lie on the couch with my laptop; an hour later, I might do some lying-down abs exercises, etc. And I only attempt the muscle-building on days when I feel my best. I improved with both yoga and muscle-building last year and want to continue to strive for the goals above.

The "rest when symptoms flare" is actually a tough one for me but critically important. I tend to push myself too hard and convince myself that things "have to" get done, even when I am feeling bad, so I am trying to work on this. I only managed this 45% of the time last year, so I will continue to focus on it. Actually having it as a written goal helps me to give myself permission to "slack off" (ha ha) on bad days and take better care of myself.

Reduce Stress
This is really part of overall health, but I realized last year that I needed to work more on reducing stress and taking better care of myself. Some of my goals are:
  • Meditate 10 minutes a day
  • No computer after 7 pm
  • Take one "day off" per month
I really need to work on the meditation goal, but I find it hard to slow down and just "do nothing" during my productive time of day. My afternoon nap is sacred, so I do well at taking that time off each day, but I know meditation would help, too. I learned Transcendental Meditation (TM) when I was 16, so I have the tools; I just need to practice.

I know I spend way too much time on my computer and that it is tiring for me...but I am totally addicted to my online life!  So, I have tried to set limits for myself, to ensure I don't overdo and also to make sure I spend quality time with my family in the evenings. I'm going to continue to work on this one!

Taking a day off each month is an idea I got from an online friend (who does not have CFS). This is actually really tough for me. I am always focused on being productive; even on crash days, I lie on the couch with my laptop and try to get stuff done. So, the concept of a day off once in a while - a day just for me, with no responsibilities or obligations - is a difficult one for me but very, very beneficial. I only managed it 25% of the time last year, so I hope to do better this year.

So, that's a summary of my health-related goals. How about you? Have you set any goals for yourself this year? Baby steps...

Saturday, January 19, 2013

More on Exercise and CFS

For those who are interested in hearing more on the subject of safe exercise for ME/CFS patients, Jennie Spotila has once again written an excellent and comprehensive post on her blog, Occupy CFS.  In this post, she compares the exercise guidelines recently presented by Dr. Nancy Klimas (and referenced in my last post) against the exercise guidelines suggested by CFS exercise specialists at the Pacific Fatigue Lab, well-nown for their excellent research on exercise and post-exertional crashes in CFS.

By looking at all the information in one place, Jennie has presented an excellent overview of safe exercise for people with ME/CFS.

Wednesday, January 16, 2013

Dr. Klimas's Exercise Program for CFS

On Monday, the CDC hosted the second in a series of phone conferences with ME/CFS patients, PCOCA: Patient Centered Outreach and Communication Activity. I wasn't able to participate, but I am excited that they are doing this and they reported on a lot of progress in areas of research, doctor education, and better healthcare for patients, all as a result of earlier patient requests. All of this is excellent news, especially the overall fact that the CDC does seem to be listening to patients and trying to take action on our most urgent needs.

The Life As We Know It blog posted the best summary of the teleconference that I have seen.  It is brief and easy to understand and highlights some of the most important points covered. Take a look.

All of that good news has been somewhat lost in a flurry of patient protest over the last portion of the teleconference, where Dr. Nancy Klimas, prominent and well-respected ME/CFS specialist, talked about how she is using exercise to help her CFS patients. She was joined by Connie Sol, an exercise specialist who trains athletes with MS. The deluge of dissent came from the fact that the two did not specifically mention exercise intolerance aka post-exertional malaise during their part of the program (again, this is second-hand). I didn't listen to it myself, but I have heard lots of outraged patients take issue with this.

This didn't sound like the Dr. Klimas I have heard speak before, the doctor who has probably helped more patients than any other CFS doctor in the nation (and perhaps the world). I was puzzled by all this...until I read the summary at Life As We Know It. If you read the summary of Dr. Klimas' talk carefully, you will see that - although she is using the word exercise - she has carefully defined what that means for someone with CFS. She specifically notes that a person with CFS should wear a heart rate monitor and NEVER go beyond his or her anaerobic threshold (AT). If you have ever worn a HRM, then you know, we are not talking about jogging here! In fact, she says that the best way to start is with exercises done while lying on your back and in very brief time periods, perhaps 1 minute of exercise followed by at least 2 minutes of rest, never going above your anaerobic threshold.

From my own experiences, I think this is excellent advice. In case you missed it, I have written here about using a heart rate monitor to avoid post-exertional crashes (this link also explains what AT is and how to calculate yours). Dr. Klimas takes this a step further with the instruction to stay strictly below your AT and go very slowly and gradually. When defined this way, exercise no longer needs to be a dirty word for people with ME/CFS. We may not be out walking miles or hiking the Appalachian Trail anytime soon, but every tiny bit of progress can help to move us forward.

I know I have been going too fast lately. I take beta blockers to keep my heart rate down so that I can manage a lot more activity, and I do try to stay below my AT.  For instance, if I am taking a short (slow) walk in my neighborhood and my HRM beeps that I have hit 103 (my AT), then I stop and crouch down and rest until it comes down again. But I am crashed today, and all I did yesterday was 13 push-ups and some gentle ab exercises while lying on my back. The abs work did keep my HR below my AT, but I went over my AT at about the 6th push-up and kept going. I was just so excited at the proof that I am getting stronger! A few months ago, I could only manage 8 or 9. Obviously, that tiny bit of pushing myself over my AT was too much.

So, I plan to take Dr. Klimas' advice and bring things down a notch to where I can manage a bit of exercise without crashing the next day. I am close and I do manage some days, but I can see I need to be more disciplined about it, and she has provided some excellent guidelines.

Friday, January 11, 2013

Misunderstandings and Misperceptions

I called my mother on Monday of this week. I was feeling pretty crashed (I really shouldn't make phone calls in the afternoon, my low time of day) and perhaps a bit cranky.  She was her usual cheery self. At one point when I was saying something about my illness, she gushed, "Oh, but you are doing so much better these days! And so is Jamie!" I got really irritated, feeling like she wasn't listening to me, thinking, "After 10 years, how can she still not understand how sick I am and how much I struggle every single day?"

Now at this point, most of you are probably right there with me, feeling that sense of indignation so common for all of us with this nasty invisible illness, feeling misunderstood.  But guess what?  I was wrong.

After stewing about the conversation for a day (and waking up in the middle of the night, too), I decided I needed to talk to my mom about it. She and I are close, and early in my illness, we'd gone through some very rough times. I knew from past experience that if I held my feelings in, I'd just get more bitter and resentful toward her, and I didn't want that to happen again. I knew she'd probably be defensive, so instead of calling, I wrote a short e-mail note. That also gave me plenty of time to carefully think about what I wanted to say - I didn't want to blurt out anything I'd regret. I sent what I thought was a very tactful note, telling her that some of the things she'd said had made me feel like she wasn't listening and didn't understand.

She called me immediately. Much to my surprise, she gave me a bit of a mild scolding! At first, I thought she was just being defensive, but I listened to what she was saying:

"I do understand. After 10 years, I understand very well just how sick you are. I have seen you lying on the floor on Christmas Eve, with your face beet-red. I have seen Jamie visiting here, too sick to get up off the couch all weekend. I know exactly how bad things are and how hard it is for you to do normal things. I get it."

She explained that she was just trying to look on the bright side, as is her norm (and mine - I learned my positive attitude from her!), trying to be positive and bolster my spirits. She told me that a close friend of hers has cancer and has specifically asked her friends not to talk about her illness and to be extra-positive around her, so she was just doing the same with me.

Finally - and this is the part that really hit home - she said, "I think that you are so used to being misunderstood by people, so used to people not knowing how bad things are, that you just automatically assumed that it was the same with me."

I thought about it and realized she was absolutely right. I was being extra-sensitive because of both feeling poorly and, as she surmised, assuming that she, like everyone else, just didn't get it.

Even though this was a minor misunderstanding, I wanted to share it with you because I think we probably all do this sometimes - assume the worst, even from our close loved ones, because we are so used to being ignored and misunderstood.

We all know that misperceptions are rampant with ME/CFS - it's just being tired, it's not that severe, etc. - but this time it was my own misperceptions and misunderstandings. This really gave me something to think about.

The second lesson, of course, is that it is always better to get feelings out in the open (in a loving, kind way), rather than to let bad feelings simmer and fester. That is a lesson that I seem to keep re-learning!

Monday, January 07, 2013

Movie Monday 1/7

We had a busy week, traveling back from Oklahoma and getting back into our normal routine. So not a lot of time for movies, though we fit in two:

On New Year's Eve, at my father-in-law's house, we watched Deck the Halls, a silly holiday comedy. My FIL has trouble following complicated movies, so we were trying to find something he'd enjoy (a tall order!). The movie stars Matthew Broderick and Danny DeVito as neighbors who get wrapped up in a feud over DeVito's giant light display. It was just silly, seasonal fun, fairly predictable and very light but a pleasant way to pass the evening until it was time to watch the ball drop.

This weekend, back at home (and recovering!), Ken and I shared an old favorite with the boys, A Fish Called Wanda. Anyone remember this one from the 80's? It's a caper comedy, starring Jamie Lee Curtis, Kevin Kline, and John Cleese (we convinced them to give it a try by invoking Monty Python!). It's about four people who plot a bank robbery together and then every one of them tries to double-cross the others...and, of course, hilarity ensues! It is fast-paced, crazy fun with lots of laughs. Much of it is silly - this is not highbrow, subtle humor - but it's a lot of fun. We all enjoyed it.

That was it for movies, but we tried two new TV shows this week - Arrow and Firefly (which I got for my husband for Christmas, thanks to recommendations from YOU). We are enjoying them both, along with episodes of Modern Family (another DVD gift from Christmas), Elementary, and NCIS-LA.

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 on my book blog.)

Saturday, January 05, 2013

What CFS Patients Want Well People To Know

The Massachusetts CFIDS/ME and FM Association recently conducted a survey of patients about their relationships with well family and friends (and the outside world in general), asking "What do you want well people to know?" The results are interesting; many of the comments really resonated with me.

ProHealth published this article on What CFS Patients Want Healthy People To Know, based on the survey results. The article is a bit long and somewhat repetitive, but overall a great summary of our typical interactions with the outside world. I shared the article on Facebook with my family and close friends - I think it is easier for them to hear some of this from a generic source like this survey rather than from their sick loved one directly.

Friday, January 04, 2013

Looking Back at 2012

Happy New Year!

I just love the start of a new year. It feels hopeful to me, a fresh start, and I am always eager to get back to "real life" after the holiday season.

I don't set resolutions per se, but I do take time at the start of a new year to look back over the past year and set goals for the coming year. I thought I would share with you some of my year-end summary that is relevant to life with CFS, and then, in a later post, some of my goals for 2013.

As many of you already know from past posts, I am a data geek and keep track of how I feel each day with a 1-5 scale (1 is great; 5 is severely crashed). Last year, I looked back at 2011 and saw I had improved overall. Looking back at 2012, I see that I was a little bit worse than the previous year, with an average rating of 2.5 versus 2011's average of 2.4. That's only a 5% change, but I was still surprised to see it because I know I am still able to do much more than I could previously.  Ironically, perhaps that is the problem! With my symptoms less severe these days and crashes less frequent, I think I am often doing too much and pushing past my limits, resulting in more mediocre days and fewer good days.

I didn't really try any new treatments this year, other than switching from short-acting beta blockers to long-acting beta blockers just recently. As I explained to my doctor when she finally insisted I come in for a check-up, I ignored all my own health issues this past year because I was so focused on trying to help our son, Jamie. That is really the #1 thing that overshadowed everything else this past year. For the first 8 months of the year, as in much of the previous year, Jamie was horribly and horrifyingly incapacitated. He missed most of his senior year of high school and struggled mightily to finish enough work to graduate.

The good news is that he is doing much better now. Thanks to beta blockers, lots of new supplements to treat his herx reaction (to Lyme and other tick infection treatment), and perhaps just a case of good timing, he finally improved at the end of August, just in time to start college. That he is able to go to college (3 classes a semester), live on campus, and get back to living a somewhat normal 18-year old life is nothing short of a miracle to us and something that we are grateful for every single day. He still has a long and difficult road ahead, but at least he is now living his life and not trapped on our couch every day.

In looking back at the year, it occurred to me that maybe these two things are related. Perhaps my doing slightly worse had to do with the extreme stress I was under for much of the year (I do actually have data on stress, too, but I haven't gone through it yet!). In addition to watching my son suffer and feeling helpless to do anything (there is no worse feeling in the world), we endured extreme stress in battling his high school teachers and administrators for the accommodations he needed and helping him apply to colleges and for scholarships when he couldn't even sit up most days, not to mention worrying about his future.

So, I am hoping that maybe this coming year, with the stress greatly reduced, I can recover those gains I made in 2011.  Next week, I will share some of my health-related goals for 2013.

How was your 2012?