Plan of Attack

We have not had insurance since my husband left his job and started our own business three years ago.  I was not overly concerned, because frankly, I was getting nowhere with the doctors, and I didn't feel like they had anything more they could offer me.  I figured pacing and supplementation were as good as anything medically offered.

The discovery of XMRV changed things for me.  So, last week, I purchased health insurance for myself.  As soon as I get my ID card, I'm going to meet with my doctor again.  I will first ask for Klonopin and LDN, two drugs that have been known to be somewhat helpful for CFS.  Then, I plan on getting tested for XMRV.  If I come back X+, I will be requesting to be treated with the HIV drugs that work against XMRV.

I don't mind being a guinea pig.  I don't want to wait for clinical trials.  My life has been scraping the bottom for about a year now.  This summer, I barely left the house.  I can no longer go shopping, and driving any distance is difficult.  I can't imagine that side effects from the anti-retrovirals could possibly be worse than what I am already living.  I strongly suspect that it will help me, and I don't like the idea of waiting, allowing the retrovirus to continue to reproduce and gain a further stronghold in my body.

Of course, I'll let you all know what happens as it happens!  In the meantime:  Has anyone tried Klonopin and/or LDN for CFS?  What have been your experiences?

Getting My Feet Wet

Well, I said I was going to start taking my writing seriously, and so I've begun! On my writer's blog, I've posted the beginning of a new short story. I would love to have you check it out and give me your impressions -- did the opening effectively "hook" you, were my descriptions effective, did it leave you wanting to read more?

Check it out at:

http://shelli-proffitt-howells.blogspot.com/2010/01/calling-all-critics.html

To A Healthy New Year

I've discovered I don't do the official New Year's resolutions anymore. I don't like lists of things I "should" do. Instead, I find that I ruminate a few days, get a feel for the new year, and decide what is important to me. I've decided that my focus will be on two things.

The first area of focus -- surprise, surprise -- is my health. I think back to the beginning of last year and realize how much I took for granted. I thought I could build up a bit of energy, then blow it all on some "big" event, and then rest up and rebound right back where I was before. It worked, too, for awhile. I was lulled into a false sense of security. Then, near the end of summer, I discovered that I wasn't rebounding anymore. I was in a sustained crash, and no amount of resting was making it better. This level of functioning became my new normal.

With frightening reality, I realized that if I continued this pattern, I could easily push myself into severe CFS. I had been playing Russian roulette with my health. I had been taking one step forward, two steps back, and the next step could land me in bed for good. I have to change.

My new approach is one step back, two steps forward. First, I didn't exercise at all during the months I was crashed. I thought it would help me recover. What I discovered is that I ended up in a lot more pain than I usually am. I recognize that exercising has a price, but I also know that for me it is indispensable. So, I've added light yoga and strength exercises to my daily routine. Yes, it takes up extra energy, but I need to make room for it.

Second, I stopped cooking during my crash. Which meant I ate a bunch of crap for months -- frozen, canned, processed food. I'm sure it added to my overall poor sense of well-being. I'm back on track with preparing menus, buying healthy foods, and cooking when I'm up to it or enlisting my kids' help when I'm not.

Third, I have drastically reduced my activities. I stopped going to church completely, although it broke my heart. No more book club. No more girls night out. No more school events. I rely more heavily on carpooling. I limit shopping to one day a week.

Fourth, I've started a new protocol. I'm trying d-ribose and oxygen therapy. The d-ribose seems to have a positive but not miraculous effect. The jury is still out with the oxygen therapy. If it is doing what it is supposed to do, then I am ridding my body of detrimental viruses and bacteria, which would naturally trigger a healing crisis. In that case, I would expect to see positive results sometime around February. I'll post more information about this, if anyone is interested.

My second area of focus is going to be my writing. I have dabbled with a novel since last year, but this is the year I am going to take it seriously. My goals are to finish my first draft of my novel and to become a published author. To that end, I have created a writing blog to chronicle my journey and to get some critical feedback. You are welcome to visit my new blog at http://shelli-proffitt-howells.blogspot.com/ . And, when I introduce my main character in a few days, I'd love for you to tell me what you think!

I started this blog because I was tired of feeling so alone with this disease. I couldn't have imagined the friends I would discover through it. Thank you so much for your kindness and support. It surprises me that I care so much for people I've never met. I know you are all facing the same struggles I face. You are in my prayers as I wish all of you a happy, healthier new year!

Sweetness

I have been trying to adjust my diet lately, and I've come upon an interesting question: Which sweetener is better for you? I've heard that aspartame is not good for people with CFS, but I seem to tolerate it better than actual sugar. I love to have a SlimFast shake in the morning, because I hate breakfast and it's the only thing I can stand. Also, I want to start drinking sports drinks for electrolyte support, but high fructose corn syrup is definitely not good. Is sucralose any better? And I really like the Crystal Lite packets you put into your own water bottle, but again ... aspartame. Does anyone have any experience or advice with this?

As an aside, I have actually had a good week! You couldn't tell it from my lack of posts. Of course, the end of the school year is ridiculously busy. But I've felt a few days of really good energy! I don't know why, because I'm back to feeling blah today.

Plus, I got the first issue of my Fatigue Busters newsletter out -- talk about stress! Why do I worry that people I don't know and will never meet won't like my newsletter and website? Am I really that identified with it? Yes, I think I am. Maybe that means I identify myself too much with CFS. Hmm, something to think about. I also updated two major pages on my website -- pacing and diet. Much better information now, I think. I also added a bit to the natural treatments section of the website. Good work, eh?

This is the last week of school. :) I love having the kids home with me. Plus, I have the added bonus of not having a fixed schedule to stick to. I can actually allow my body to wake when it wants to instead of being jolted out of sleep by the alarm. That's got to help, right?

Gardening: CFS-Style

Every year as Spring approaches, I get a sudden inexplicable desire to garden. Not just any kind of gardening -- I want a summer vegetable garden, just like I remember from my childhood. I loved the baby carrots, peas, and beans. I loved fresh corn on the cob grown and harvested from my own backyard. I loved how the zucchini took over more than its assigned mound of dirt. The watermelon was the perfect epitome of summer. And what could be better than tiny cherry tomatoes, still warm from the sun, a juicy burst of flavor in my mouth? Summer has always been my favorite time of the year, and these are the flavors of summer.

I can't say that I was an accomplished gardener before CFS. In fact, we only had a successful garden twice. Once, about seven years ago, my family and I tackled the side yard that was overgrown with weeds, some taller than the kids. My husband turned over the dirt, and I added the soil conditioners. Each child chose their own plant to grow and tend. It was a phenomenal success! We had fresh, homemade zucchini bread for months. We repeated the experiment the following year. It became quite the source of pride for us. In fact, our wonderful little garden was still going strong the day we moved to our new home.

Then, there were the normal adjustments in a new house that took my attention away from gardening. Then, the front yard needed attention and landscaping. One year, we were able to get the weeds cleared away in the side yard, but we discovered it was too hot and too late in the season to do much else. And finally, CFS hit and hit hard.

And yet, the desire to garden never went away! It was on my list of things I used to love and couldn't do any more. I mourned it. Until this year, when I decided that I was going to have my garden, dang it! I just had to get a little creative.

So, here's my garden! A ceramic container with Patio cherry tomatoes (bred specifically to grow in a pot), basil, and sage. I have two water globes so I don't have to water every day. No hoeing, no weeding, no energy to expend. My CFS garden! I am so proud of myself! I drag my kids out to "look at my garden" every couple of days. I show them the little blossoms on my tomato plant. I point out the new growth on the herbs. The teenagers roll their eyes; the little ones help me refill the water globes. And I count down the days until I have those little cherry tomatoes, still warm from the sun, to pop into my mouth.

Achievements!

First of all, I am very happy with the progress I am making on my website! I wanted to do one page per week (resulting in at least 52 pages by the end of the year), and I'm already at 39 pages! More importantly, I just completed a section for ME/CFS Awareness. Please take a look and tell me HONESTLY what you think. I can always edit it if you find any flaws or have suggestions, which I would appreciate. You can find it here:

http://www.chronic-fatigue-community.com

I will be using this information in an e-mail campaign I am trying to get my courage up for. I'm going to send an e-mail to all my friends, family, and acquaintances that explains my situation and asks them to do three things: 1. Read the "Understanding CFS" article on my website; 2. Donate $1 to CFIDS.org; and 3. Forward the e-mail to everyone they can. I have given myself a deadline of May 1st to do this, so I can tweak the website a little more and compose the e-mail. Really, I'm just nervous, so I'm buying time. If I get my courage up, I'll do it earlier.

I'm about on track with my recipe blog, The Flagging Chef (see sidebar). I have 86 recipes, and I have a slew more that I'm ready to post. I've put together three weeks of recipes and shopping lists, and I'm working on one more today. That should give me a full month's worth of healthy eating without all the trouble of planning.

I've started a new series of stretches that is helping with my chronic pain. I'm also going to start a tiny bit of rebounding today before my rest period. I'll keep you up to date with how that is going.

So, I'm giving myself a pat on the back today! And who doesn't need that once in a while, hmm?

A Gift from My Sister

I don't often talk about my faith on this blog, even though it is a huge part of my life and gives me the ability to cope with CFS. I worry that people will focus on this difference and be less inclined to embrace the similarities we share. But, today, I found a wonderful post on my sister's blog that I feel transcends religion and I think I just have to share it with you. The title is "Boulders and Pebbles."
"In church on Sunday, the sacrament meeting topic was adversity. I had several thoughts go through my mind as I struggled to listen. This is not an easy thing since my kids are wild animals. Anyway, as they spoke I thought of one of my favorite Scriptures. It is 2 Nephi 2:25, in the Book of Mormon. It says that "men are, that they might have joy." For years, I thought that it meant that our purpose on earth was to be happy. Then a while ago I read it in context with the whole chapter and I realized that our purpose was to have opposition in all things. That in order to have joy, we must have misery. It really struck me that our sufferings are a show of love, as much as our blessings. They both are there to help us feel joy more fully and more importantly, to learn and become more like our Father in Heaven.

"Bro. Chong, the last speaker, had a great object lesson to go with the topic. He said that when you hold a pebble right up in front of your eye, it looks like a boulder. As you pull it back, it comes into perspective and you can see it for the small pebble it is. I realized that so many of my trials in life have been like that. As I am going through the trials, they seem overwhelming and insurmountable. Then, looking back, after they are over, they seem like they were simply another bump in life. Usually a bump to help me prepare for the next bump. Unfortunately, like the pebble, it takes distance to usually get the whole perspective. Next time I am in a rough spot, I am going to try and remember this. I will keep telling myself, this is just a pebble! Maybe when it is all said and done, I will make a mosaic."


This is my goal -- to take the best (if not the easiest and most pleasant) parts of my life and create something beautiful and amazing.

Good Things

On this last day of January, I am here to celebrate good things!

First, my circling shark turned out to be more of a goldfish. With sharp teeth, I mean. It had a little bite, but it wasn't nearly as dangerous as I had feared. I took things easy, I was gentle with myself, and I bounced back surprisingly quickly. Yay!

Second, I actually hit a lot of my goals! I added a few good links and two actual pages to my website. I cleaned it up a bit and tweaked my key words. Plus, I have tons of good ideas to work with, and I'm feeling motivated to work on it. I checked my stats, and it looks like traffic is picking up! It's very exciting.

Third, I completed enough research to actually START MY NOVEL! Yes, I put pen to paper and actually began to write. I'm afraid I'm not going to be able to share it with anyone, though, not even my husband. I'm feeling a little protective of it, and I can't handle any criticism. I believe the fear would stifle my voice, and I wouldn't be able to write effectively. That's hard, though, because another part of me is yelling, "Look at me! Look what I've done! Validate me!" I think I'll let the fear win out this one time.

Fourth, I've added tons of good recipes to my recipe blog. I feel like I'm getting a good variety of meals that seem to be really easy to fix. I can't wait to try them all.

Fifth, I'm taking good care of myself right now! I'm pacing. I've skipped a lot of TV at night, so I'm getting to bed at a reasonable time. I've done three weeks of menus from my recipe blog, so we've had a lot less processed or fast food. I've kept up on yoga, and I've really enjoyed my belly dancing! I seriously haven't lost any weight, but I haven't gained any, either. And I feel good! That's the ultimate goal, anyway, right?

Ah, yes, challenges await, but for the moment, I'm basking in the warmth of good things!

Back to Work: Goal Setting

I almost titled this post Goal Setting for 2009, but I don't want to dictate my entire year right now -- just set some goals to get me started in the right directions.

I am off to a really, really good start! I discovered something important over the holidays -- I am a worrier! I never knew that, because I don't lie in bed at night thinking over all the things that could possibly go wrong with me and my family. No, this is new since I've had CFS. Whenever I have a big event coming up, I fret terribly about how much it is going to wipe me out. All that stress and anticipation on top of the actual event exhaust me way more than it really should. This is good information to have. It means that I need to be careful not to plan too many big events, and when I do, I should keep realistic expectations and not FREAK OUT!

So, back to my goals: I am using the tools on my website, Chronic Fatigue Community. I am eating healthy again. I'm using menus to plan healthy meals. I'm exercising better. I've increased my yoga a little, and I've started belly dancing! There's a great program on Fit TV that breaks it down into 10 minute segments. It has a nice, slow pace, but it picks up when they put all the steps together. It seems perfect for me to not overdo it.

As for my projects, I've decided I need to get focused. I will add one new healthy recipe to my recipe blog, The Flagging Chef, every day (averaged -- I can cheat and post several at once to meet my goal). Also, I will complete one new page for my website every week. I have so many great ideas, things that will help me by writing them down. I'm also hoping to share what I've learned with others in cyberspace who may be experiencing serious fatigue.

Finally, an announcement -- I am going to write a novel! While I was on my 3-day trip with my husband, an amazing idea came to my mind. I've always wanted to write a book, but I've always thought my life was too boring to write about. Now, I finally have a very interesting, workable idea. I have some resources for research, and I'm excited! I don't really know how to quantify it yet, so my goal will just be to work on my novel every week.

It is interesting how CFS seems to spark a level of creativity that hadn't been tapped into yet. I've seen this on other CFS blogs, too. I'm excited! Wish me luck, and keep me in your prayers.