Sometimes the Tide Brings You a Sail

I enjoy the movie Castaway where Tom Hanks plays a FedEx executive that gets washed ashore a deserted island after a plane crash. After he is rescued and brought back to the U.S., he talks about the desolation and despair. But one day while he was stranded the tide washed up part of a Port-a-Potty, which he subsequently repurposed as a sail to his makeshift raft. He said that you have to hang on because you never know when the tide will bring you a sail.

I’m struck by a couple of things. First of all, life is what you make of it. I’d never have envisioned a plastic potty house as a life-saving tool, but it just goes to show, it’s all in your perspective.

Secondly, that Tom Hanks’ character was right. You never know what will be coming next that will completely turn the situation around.

My day started as a Porta Potty day — not the door, the contents.

But before long, some people stepped up to the plate to deal with some issues and my husband sent me a beautiful bouquet of red roses and stargazer lilies. And while I’m still in the shioup, I’ve got some people starting to paddle.

My thoughts in general have been going down that path. The fatigue and increased Sjogrens have really bothered me and, coupled with some mounting issues at the office, I wonder why I don’t quit this rat race and stay home and take better care of my health. But then things tend to get worked through and it’s a week later and I’m still here cashing that paycheck.

I think with RA in general, you have to hang in there. There is so much research going on and new discoveries every day that you have no idea when that piece of porta potty you’ve been dealt will be transformed into a sail.

Here’s hoping you’ve got clear sailing ahead. Thanks for checking in.

Jackson Clint Taylor

The newest member of my family, Jackson Clint Taylor, arrived this morning to my niece and her husband. He also has a big sister, 4, who is at least temporarily enamored of him. I can’t wait until she asks her mother if they can take him back. I’m sure that will happen sooner rather than later.

If Jackson Clint had waited a day, he would have been born on what would have been my father’s 90th birthday. It was really strange, my favorite aunt was my dad’s twin sister. I could always remember his birthday, but I could never remember hers. Go figure.

Anyway, not having children of my own, I live the whole childbearing/rearing saga vicariously through the rest of my family. And as much as I do love all my various nieces and nephews and their offspring, vicarious is plenty close enough. I love to spoil them, then give them back to their parents.

My niece and I are pretty close. I took her with me on my first trip to London and we had a blast. It was the first time we’d really spent any time together without the rest of the family around. Some of those pubs in London will never be the same.

And even though she’s not my child, we share a lot of the same physical characteristics — like hip dysplasia. To my knowledge, we’re the only two in the family that have it. There are a number of other of physical likenesses as well, enough that it’s evident that we’re linked by a common set of genes. And even though there hasn’t been a definitive genetic link with RA, it can tend to run in families. And so I worry about my niece.

But right now she, and the baby, are both doing fine.

I hope all the things that come your way today are bundles of joy. Thanks for checking in.

To Sleep, Perchance to Dream

Every night this week I’ve dreamed that the next morning was the weekend and I could sleep late. And every morning I was disappointed to wake up and find out it was Tuesday, or Thursday, or even today, Friday.

I’m not sure what causes these weird dreams. I dream more vividly the two out of three nights that I take my Celebrex, and on Wednesdays when I take the Benadryl before I take my Enbrel shot.  But this week has been fatigue-filled, so I think it’s my subconscious yearning for a day to sleep late. Last weekend my husband and I slept until almost 10 o’clock both mornings — unheard of for us.

In addition to the fatigue, I’ve noticed that my Sjogren’s is getting worse. I can no longer wear my contacts, and even without them, my eyes are a bright shade of red by mid-morning. I take Evoxac to help relieve the symptoms of dryness and while I used to occasionally miss the mid-afternoon dose, I have now moved it up taking it from 3:00 pm to 2:00 pm — an hour earlier. I’ve noticed that when I wake up in the morning, both my eyes and my mouth feel glued shut from the dryness.

Overall, I can tell the Enbrel is helping the joint symptoms, but the worsening of the other areas is somewhat troubling. I’m next scheduled to see my rheumatologist next month. However, she is quick to chastise me if I don’t come in earlier if I think I need to be seen. I’m not sure what the answer would be if I did go see her. More drugs? I hope not, but that’s the bag of tricks most available to physicians.

In the meantime, I’m going to keep on keeping on — and get ready to watch a potentially super Super Bowl this Sunday.

I hope your dreams are pleasant and your rest uneventful. Thanks for checking in.

About Risk … And Reward

This morning my husband and I were watching the news before leaving for work and I commented on the story that another terrorist attack against the U.S. is expected within the next six months. I told my husband that was fine timing for us to be planning to be in New York or Las Vegas, both of which are on our calendar and probably on most terrorists wish lists as well. My husband pointed out that Dub and his wife Laura live just a couple of miles from us, which probably puts us on the terrorist map as well.

Here in Texas, we tend to refer to George W. or ”Dub” as “43″ to distinguish him from his father, who was the 41st President of the United States. (Once when we were in London, there were six-inch headlines in the paper that said “Dub Comes to Town”, when the then-Present George W. Bush was making a state visit.)

But I digress.

The fact is, life today is a constant risk-benefit analysis. I probably am exposed to more risk driving in rush-hour traffic twice a day with crazy Texans than I am having a terrorist blow up my neighborhood. (My nephew, who escaped from the Word Trade Center on 9/11 might disagree.) But I get a lot of benefit from showing up for work every morning, so I accept that risk.

Today is Enbrel day. As I look back to a year and a half ago when I was first diagnosed, and I avidly read all the literature my rheumatologist provided, including all the side effects of the drugs, I was overwhelmed. I’ve never been one for long-term drug therapy if it can be avoided because even small side-effects can escalate if given enough time.  I went off drug therapy after I had my hip replaced and less than six months later got to replace my shoulder. 

Yes. I worry about the risks of the strong, constant barrage of drugs that I flood my system with to keep the disease at bay. But I reap the benefit of having a happy, busy, productive life — at least for a while longer.  There is no cure, but there are benefits to be had.

I hope your day is filled with benefits of all kinds. Thanks for checking in.

Best Laid Plans

Happy February.

It’s usually by this time of the year that I have vacations planned, and we’re pretty much in progress. We’re going to Jamaica in March for a belated birthday trip for my husband (postponed due to triple bypass). I’ve decided to go to New York for my birthday in May. There’s a great play on Broadway called A Behanding in Spokane starring Christopher Walken, about a guy who lost his left hand and has been looking for it for the last 20 years. Something about that (and Christopher Walken) appeals to my weird sense of humor. And, finally, we’re playing the numbers game with American Airlines for our annual London trek in November. It’s a bit of slight of hand balancing spending the miles or the money or some combination thereof.

All of this shows a great deal of faith that both my husband’s and my health will hold up for these adventurous plans. While Jamaica involves a lot of laying on the beach, reading, and alcohol consumption, both New York and London involve lots of trekking about.

And while I’m, at heart, a realist and know that RA can come up and smack my best laid plans, I also believe that you gotta have faith. Trust me, sometimes, that’s the only thing that gets me up and out of bed in the morning. Plus if I know I have something fun coming up, I’m more apt to stay/get in shape for the adventure than the “why bother” I’m just going to work routine.

So that’s what my calendar holds so far for 2010. I hope yours has adventures of the fun kind as well.

Thanks for checking in.

Priorities

One of my [ex] husbands used to get aggravated when I would get home from work just in time to field yet another call or email from the office. He felt that “our” time was being compromised. I used to assure him that nothing was more important than he was, but I did have a few things more urgent.

In stress management, you learn about managing priorities, and even the least important item becomes urgent if it’s ignored long enough.

I used to have a good friend who was a single mother of two school-aged kids. Her priority was nutrition and so evening meal time with a good dinner on the table was very important to her. However, being a working woman, that meant that other things would have to slide to take the time to shop, prepare, and clean up after a home-cooked meal. One of those things was housework. Her solution was that once a week (I think it was Thursdays) was designated as “clean-up day”. She’d pick up the kids and they’d get fast food to go for dinner (instead of a home-cooked meal), then they would spend a couple of hours cleaning house. It didn’t hurt the kids to eat fast food once a week and her housework got caught up on a regular basis.

In today’s busy world, it’s difficult to juggle the multiple roles we all have. And if you’re dealing with a chronic disease like RA, that’s a whole different level of management skills. Not to mention that RA can and does make it difficult just to deal with everyday life.

As I’ve followed other RA bloggers, especially those that are more affected by the disease than I am currently, I have often wondered how they manage when there are days when they need help and support just to get out of bed. And I’ve thought many times what a toll is must be for the spouse or partner who is also affected by the disease, but from a different perspective.

All of these thoughts congealed for me when Rheumatoid Arthritis Guy (www.rheumatoidarthritisguy.com) recently talked about his struggles and focusing on priorities. He had to put some things – important things – aside for awhile as he worked on health issues. Now that he is stronger, it is time for him to pay more attention to other aspects of his life. I don’t envy him his situation, but I applaud his courage and his thoughtfulness in making very difficult decisions.

I think sometimes it’s easy to forget that we aren’t the only ones that suffer from the disease, and that there are other things that are both important and urgent. It would be great if we could all take off one day a week from RA - like my friend and her housecleaning. Or better yet, six days of no-RA to take care of the really important stuff in life and one day to deal with the disease.

I hope your priorities are clear and your decisions bring the results you need. Thanks for checking in.

Some Days the Blessings Just Don’t Add Up

I didn’t post yesterday because I had a bad case of the blahs and had absolutely nothing inspiring, entertaining, or even very interesting to say.

Today isn’t much better.

Those of you who have followed along the meanderings of the mind that get posted here know that I’m a great advocate of counting your blessings. However, I have to admit there are days when the blessings just don’t seem to add up to enough to make a difference.

At the moment, I think part of it is the fatigue. The fatigue has set in a major way since my death march of a trip to Seattle last week. And it’s hard to be positive when you have absolutely no energy and you’re deep down, bone chilling tired. Laying there in bed this morning, snuggled under the covers, felt wonderful and it was very, very hard to think of a good reason to get up. I have a miserably challenging day at work today and I lay there in bed contemplating, “Do I call in sick or do I get up and beat my head against the wall for eight hours?”

I got up. The challenges aren’t going to go away, and the fact of the matter is, even though I’m not up to my normal superwoman vim and vigor, any progress I make, is a good thing.

Hope you have great reasons for getting out of bed today. Thanks for checking in.

A Day Late …

Okay, so I promised it would only be six days before I posted again, and it’s been seven. However, I had a couple of significant medical appointments this morning that could have had me updating other news, and I wanted to wait until I got through those. I shouldn’t have worried, all systems are go.

So I have nothing to report. The trip was gruelling, mind bending, and a real reminder why I don’t do red-eye flights. I left Seattle at 1:40 am (Dallas time), and got back to town about 5:00 am. My husband, bless his sweet heart, had gotten up at 4:00 am to come claim me at the airport. I got home, took my (late) Enbrel shot, got three hours of sleep and went to the office, and worked until 6:00 pm. I think I was asleep by 8:30 last night.

So all’s well. End of a successful, if busy, week. It’s sunny and warm in Dallas, the Enbrel’s kicked in, and I don’t have to work this weekend!

Hope your day is also filled with sunshine. Thanks for checking in.

By the Numbers

Being the anal-retentive control freak that I am, I like planning what’s ahead of me. I thought I’d share what my 2010 has in store, by the numbers:

96 - That’s the number of “regular” prescriptions I’ll be taking (8 scrips times 12 months), plus the miscellaneous ones for antibiotics to get my teeth cleaned, pain prescriptions, etc. that show up once in a while.

52, 12, 52 - Thats the number of Business Review Meetings, Directors Meetings, and Employee Meetings, respectively,  that I will be supporting and attending during the year.

19 - That’s the number of doctors’ appointments that I foresee: 4 to the rheumatologist, 3 to the PCP, 2 each for the dentist and retina specialist, as well as my NEW friend the cardiologist, and one each to my optometrist, dermatologist, gynecologist, orthopedic surgeons (2), and one mammogram. And that’s if I stay healthy.

7, 6, 5 – That’s how many days I’ll get to spend in Jamaica, Las Vegas, and London, respectively, this year (if all goes well).

3,900 - That’s the number of dollars I’ve allocated to my FSA account to help pay for all those scrips and doctors appointments

0 – That’s how many trips to the hospital I have planned.

6 - That’s how many days until my next blog. I’m off to Seattle next week on business.

Hope you have a busy and productive 2010. Thanks for checking in.

Accept, Change, Leave

In any situation that makes you unhappy or uncomfortable, you have one of three choices: to accept it, to change it, or to leave it.

Of the three, I think acceptance is the hardest, because it means just that — accepting the situation without continuing to whine or complain about the thing(s) that make you unhappy. If you continue to complain, then you haven’t really accepted things. 

Several years ago, as many couples do, my husband and I hit a bit of a rough patch in our marriage. Not having the best track record with marriages, leaving was certainly an option for me because I knew that I wasn’t going to change things. But I wanted my marriage to work, so I accepted the fact that if I were going make that happen, I needed to accept, and love, my husband for the way he was. And it’s worked. I no longer get frustrated at the small stuff and when things reach a point that things finally bug me, I let my husband know, in a courteous and gentle way, and he is quick to remedy the situation.

RA, however, is a different story.

I have RA. The only way to leave the situation is suicide, and that’s not a good choice. I have accepted the fact that I have the disease, but I’m also working to change or minimize its effects. I think I’ve finally found a drug that will relieve most of the symptoms and hopefully slow the disease. I am trying to take care of my overall health through diet, exercise, happy thoughts, pedicures and anything else I think will work. (Okay, maybe the pedicures aren’t for the RA, but they make me happy and mental wellness is an important part of overall health. I just can’t seem to get my doctor to write a prescription for them.)

So as you go about your life today, think about your choices and the clarity as well as peace they can bring.

May all your choices be good. Thanks for checking in.