Slow train coming...

Wow, more than two months since my last post and still we're not in school. She feels better, she feels worse - I'm reminded of the flower petal game we played as kids. He loves me, he loves me not. I just know we're going to land on the petal that assures "she feels better" any day now. :-)

I don't want this to sound bad, we have had success. We continue to learn and we continue to make missteps - most times we don't even know what went wrong. The last time it was either: the taco salad she had at daycare (she loved it!), the two bites of five-ingredient ice cream, or - shoot, I can't remember the other item, but suffice it to say many times we're never really sure where we messed up. They've added a single wheat back to her diet daily, put her on a probiotic, and are giving her extra vitamins. Plus the nightly Miralax treatment. She's gained two pounds! That's huge since she initially lost a little more than eight, which really is 10 percent of her body weight.

As a Christmas gift I enrolled her in ice skating classes - she was thrilled! But it was apparent at the first class, all of the other kids were not really beginners. She was embarrassed, they were spending all of their time waiting for her (she was at least twice as slow as everyone else). I felt bad, too, this was supposed to be fun. The arena allowed us to apply the rest of the class money to private lessons and now she is having fun. We have a lesson this morning and we're trying to go at least one other night a week. Exercise and fun, all rolled into one! She doesn't even know that it's helping her, it's so wonderful to see. And so far I haven't hurt myself, so that's a positive...

Spring break ends this weekend, the school's given her more tutoring time and are testing her for a 504 plan. I don't even know if this is the right thing to do, but if I can't get her back in school regularly, this is what will prevent us from the Becca Bill going into effect. Truly, while she's sleeping I can hear what's going on in her stomach and it sounds painful. On bad nights, even while she's sleeping she moans and groans and wriggles as though in pain. Last night was a good night, she slept all the way through, but even as I look at her, I see the pale color to her face, the just-there sallow eyes. She breaks my heart!

But it is getting better and I'm moving toward that. She's requesting her smoothies now, she's making right choices on her own, and occasionally I see the light in her eyes again. At her most recent appointment, her counselor noted that the young girl she had seen that day was almost a different young girl than had originally come to her - there was a bit of the bubbly back in her. That young girl is showing up again more often now and we are, oh, so glad to see her!

I'm waiting for now while she sleeps, but once she opens her eyes, I'm going to give that young girl a morning hug - give yours a hug, too!

Interesting how things relate...

Just read the comment from my last blog post. It's a funny world when you think about it. Just today at work during lunch I took part in a free yoga session, and what's the possibility that in reading the comment tonight, you've suggested yoga! Perhaps I'll have to seriously pursue the yoga thing, it almost seems kharma-like now. I did enjoy it -- it helps to break up the day and remember that life isn't about work. Work is just how you maintain your lifestyle. It's great to enjoy what you do, but it isn't always the most important defining factor in your life. And, secondly, I woke up some muscles today that I don't think have been used in quite some time. How is it that we have this body with all of its resources (how many muscles do we have?) but we can go through life and only use a small percentage? Amazing.

With everybody mended on this end, and the sun making a showing recently, with some success at work, great discussion with my sibling, the world is seeming somehow brighter today. Almost as though I've turned a corner and the lightbulbs here are brighter and warmer. Let's hope this isn't quick in passing! My doctor recently prescribed megadoses of Vitamin D weekly, it seems I'm deficient, and I wonder if this has anything to do with it. My mom has always maintained that she has SAD (Sun Affective Disorder?) -- it's not sun, I don't think, but basically it has to do with limited exposure to it and how that affects your mood. I've believed her, but never really thought that it had anything to do with me.

After being on extra vitamins for a week now, if this isn't what's brightening my mood, then it's a coincidence. Nevertheless, I'm supposed to continue taking this and we'll see how it goes. I used to be described as a "perky" person -- sometimes I still am! -- and I never thought I'd want to go back to that. Always thought that "perky" denoted some kind of lack of intelligence while being overtly happy, but maybe the happy part is worth the label. :-) I have also recently sought counseling, recognizing my mood has not been perky for a while, and perhaps that has had some effect also. It's a wonderful thing to have someone who listens to you and affirms what you're feeling, even if you're just being self-indulgent. Which I don't think I am, but maybe I am.

Today's post seems like a mishmash of nothing, but also everything. Is it any wonder I'm awake at 3 in the morning? My mind isn't following a train of thought, but many trains. I need to find a way to turn it off, I need some sleep before work! While it's helpful to blog, it's also unfair to the reader, I think, to just pour out whatever comes out. ;-)

As soon as I can, I intend to make sure one of my next blogs touches upon what's really the important thing (the elephant) that I keep dancing around. Maybe next time! It's not really that big of an elephant, I think it should make an appearance before it gets bigger!

Busy, but better...

Finally, through the illness! But very, very busy at work. So many people out for spring break, not to mention in my immediate area two people out for surgeries, those of us left have to cover for other departments. With the layoffs, cutbacks, we're already short-staffed, so have too much to do anyway. I'm thinking of taking a vacation! After everyone gets back and things get kind of back to normal, I may take a week off. It's time for someone to cover for me! :-)

Great discussion this week about the differences in workstyles, i.e. am I a workhorse or a racehorse? And is this a personal choice or something I feel forced into? Obviously, the hardest thing is to learn to say no. Especially when it's made extremely plain that those who do, will keep their jobs. Oh, the woes at work right now. And I know I'm just lucky to still be employed! It's hard to complain, but it's also just wrong that those in upper management feel they can say these things and that's okay. Emotional blackmail.

But we all still keep moving on. And for the better good...

Taking care...

Over the course of the last 10 years or so -- is it really that long? -- since my husband's first injury and now, just two years or so since his actual diagnosis with RSD, I've done a really good job of keeping it all together. Or at least that's what I've thought.

Friends will say things like: I can't believe how well you cope, or, He's so lucky to have you. While really I can't get past the part where it's his life that's hard. My life is great, I have my health, I can go to work every day, I can get out of bed, I can go to the store and drive my car. I've really gotten almost tired of the feeling that people are worried about me when, let's be serious, if there's anything at all wrong with me it would probably just be the guilt. You know, the part of you that feels bad when you leave the house, the part that hurts when you are able to hike the hill and he's at home just waiting for you to come back.

Is it really possible to guilt yourself into physical illness? Sometimes I do think so. If for no other reason than the horrible sleeplessness that's really taken over my night-time. I'm not sure why I can't sleep, I just know that it's difficult. Oh, sure, as soon as I lay down I fall quickly, but that's a result of sleep deprivation. I am so exhausted, it's not unusual for me to fall asleep before even the 8 o'clock shows are over. Then I'll wake up somewhere before midnight and, boom, that was it. Now I'm awake. I'll play around on the computer, maybe sew, lay down off and on, but really no success. By about 5 in the morning I'm starting to get really tired, and then I may be able to get in an hour of sleep, but when I get in the shower I just know that I'm going to be struggling through my day at work.

History tells me that this sleeplessness is a symptom, and yes, I know that it is. I probably even know what it's a symptom of. And for this reason I have finally sought some help. So today was my second session with a counselor, someone my general practitioner recommended. It is amazing how hard it is for me to talk about myself and even how guilty I feel going to this person. I haven't confessed this act to my husband yet, and I don't know that I will. He feels bad enough as it is, he shouldn't have to worry about me. I'm not clear how long I will see this person, how long it might take for me to wake up and figure out how to get back on an even slope (though isn't the definition of a slope a slant?). How am I supposed to help him when I'm sliding downward myself? And his energies really would be best spent taking care of himself and certainly not worrying about me.

So I've begun to make sure I'm "taking care" of myself and today the assignment given to me was to think a few times during each day about what it is that I'm feeling. Really, truly ask myself: How am I feeling right now? And then I'm supposed to write down my responses and keep track until my next visit. Well, this is enlightening. I didn't even get halfway down the road when I realized that most times my answer will probably be "mournful." Even the word saddens me, more than I already am.

I guess I'm mourning the loss of so many things that it's been hiding from me that this is what I'm feeling. The loss of our bright future together, the loss of a love life, the loss of having someone take care of me occasionally, the loss of innocence at the world (there are bad things that happen and it's been proven now), the loss of who I was before. And those are just the first ones that come to mind when I think of me. I certainly have a whole other couple of lists related to my husband and my children.

Oh, woe is me, I can't believe I went from the perkiest girl in class to this! But this is why I've started seeing this person. I believe I can get back to that perky girl (oh, yeah, I guess I'm no longer a "girl" -- age has a tendency to take away that moniker!).

So it only took me to my third blog post to get to the real truth of why I've started blogging. I need to journal, but I hate to write by hand. Putting my thoughts out in a blog is a bit risky, as who knows what others will think, if anyone will really read this, but it is an opportunity to get down somewhere -- really, of course, out of me -- what's going on and how it makes me feel. Cleansing really.

I promise to not dwell forever on the sad. Please check back as things get better, as I know they will. Then I will spend more time talking about my husband's illness, how it came about, what the diagnosis is, and what it means for him. Because, after all, I do believe that this is the best use of my space. I have been so enriched reading the blogs of other RSD sufferers and their spouses, I can only hope to achieve maybe half of what they have for me. It's just great to know we're not alone.

Half a century...

It's the morning of my husband's 50th birthday. He and I see birthdays much differently -- he's not excited to be here, while when I hit my 50th I was actually glad. It's not a popular viewpoint, but long ago while searching for a birthday card for my mom I ran across a saying that has stuck with me, and it definitely changed my outlook on birthdays. The card went something like: "You're having another birthday? Guess that's better than the alternative."
Seriously, what's the big deal? When asked, I always tell people how old I am. I am fifty. I want to be able to say I have lived fifty years and I am proud of it. I have done a lot in my life, things just get added to the list without me really paying attention, but at the end of the day when I look back, I really am grateful to have had the opportunity for each and every piece. There are many who have gone on before us who maybe didn't make it to fifty. Perhaps thirty was their last year. Can I imagine not having had the last twenty years? What a sad thought.
I am looking forward to the next ten years, I believe I've come to a point where I will now make the things happen I've always wanted to do. Up until now I really have focused on making my children's lives better -- that is, after all, my responsibility as their parent. But as each one of them has left the house and moved on to become responsible adults, I have been given a little more freedom. I will always be a part of their lives -- maybe more than they'd like. :-) But there are days that go by when I don't hear from them and, though I find it hard to not always call, I realize that they have lives, too, and that it's good to let go a little bit.
Don't get me wrong, I have five kids to pick from and so I can let up to five days go by without talking to each, but still have talked to one of them. I believe I've stacked the deck. I've made the best of this life. I have wonderful kids who are all very giving, responsible, loving adults, and they always make time to talk to me when I call, and I just need to give them the space to have their lives.
Happy birthday to everyone having a birthday today -- it's a great thing!