Category Archives: Rest and Regroup

Lupus Sucks, Let Me Count the Ways (#HAWMC 23)

Today’s HAWMC topic is writer’s choice and I had planned to write about being happy in spite of being chronically ill. But over lunch I read a wonderful article on ovarian cancer survivor Susan Gubar that inspired me to write about the “dark side” of having lupus instead.

“Motivated by a desire to tackle a writing problem that Virginia Woolf believed the literary women of her generation had failed to solve—telling the truth about the experiences of the female body—I sought to record precisely what I could not or would not speak to most of my family and friends.” Susan Gubar

Like Susan, I often find that I censor what I tell my friends and family about what it is like to live with lupus. I’ve had lupus for decades and have faced a mountain of indignities caused by systemic lupus erythematosus (and her first cousin fibromyalgia). I don’t share for many reasons. The most important one is TMI (To Much Information). Even though I blog about lupus, I am a pretty private person and don’t want everyone who sees me on a day-to-day basis to be preoccupied with my symptoms and wondering “Is she ok?” So most of the time when people ask me how I am, I say I am alright (or fair-to-middling), even if I feel terrible.

So I decided to devote today’s blog to “speaking-truth” about the experience of having lupus:

Anyone who reads the lupus symptom list can tell that it is no picnic, but the list still doesn’t adequately capture the suckiness of the disease.

Disclaimer: Before reading my Lupus Sucks List, please remember that Lupus is very individualized and symptoms (and severity of symptoms) vary across patients. Just because these awful things happened to me as a teen, doesn’t mean they will happen to you if you have lupus. See What are the Symptoms of Lupus for general information and contact a medical professional if you have any questions about your health.

10 Ways Lupus Sucks : The High School Edition

  1. Lupus Can Kill: The first person I ever met with lupus, a middle-school student of my mother’s, died within a week of my lupus diagnosis. 
  2. Lupus Can Affect Any Part Of The Body: Before I was diagnosed with lupus as a teen, I would lose my vision every single morning when I got out of bed. It would come back, but having tunnel vision and then going blind, even for a few seconds, is pretty scary.

    Common Symptoms of Lupus, Wikipedia

  3. Lupus Can Be Exhausting: I would be so tired during the school day that I had a hall pass to go to the health room at any time to take a nap.
  4. Lupus Can Cause Brain Fog: If I did not take a nap during lunch, I often could not remember what we discussed in class—at all—I would have no memory, whatsoever, of my afternoon classes and no notes.
  5. Lupus Can Make It Hard To Have A Social Life: I had great friends who were very supportive. But spending time with them after school was tough because I was always so tired. “I can’t come because I am sick” was my frequent response to my friends’ invitations to hang out. Having to say no all the time was awful (or worse, saying yes, then cancelling, see #10).
  6. Lupus Rashes Can be Worse than Acne:I am still a bit traumatized by having a rash across my face throughout my entire middle and high school career.

    African American Woman with Lupus Butterfly Rash, Wikipedia

  7. Lupus Can Limit Your Outdoor Activities: Being “allergic” to the sun made it hard for me to do sports or even sit outside for long periods of time. It’s a good thing I was a nerd.
  8. Lupus Can Be Super-Painful:  The pain would come and go, but I often had killer headaches, monster stomach cramps, and swollen achy joints. I even had to quit playing the piano because I couldn’t bend my pinky finger (sigh).
  9. Lupus Can Make You Physically Weak: I had to request two sets of books, one to keep at school and one to keep at home because they were too heavy to carry (Ok, that wasn’t all bad. One of my male friends would carry my books to class for me and that was kind of cool). 
  10. Lupus Symptoms Can Strike At Any Time: I could be perfectly fine, get dressed to go out with friends, and then be so exhausted by putting on my clothes that I couldn’t actually go out (see #5 above).

I asked fellow Lupus sufferers on Twitter to tweet me the ways in which lupus sucks in their own lives. Please feel free to join the #lupussucks conversation on Twitter or add comments to this post. I know that lupus sucks in so, so many ways . . . .

So Far From the Twitterverse:  

  • Lupus sucks, because it forces you to change plans more often than you make them.
  • so much pain and tiredness.
  • lots of canker sores for no reason

Take Care and Don’t Let that Sucky Lupus Get You Down,

Katina Rae Stapleton

A Perfect Day, With Lupus (#HAWMC 14)

Today marks my 14th day Blogging for the Health Activist’s Writers Month Challenge. I am excited that I blogged 2 weeks in a row without having to use a get-out-of-blog-free card. If you have been following the posts, I would love to hear from you. Please feel free to leave a comment on the page or send me a message through Facebook or Twitter.

So, now let’s turn to my perfect day . . . .

My requirements for a perfect day are very simple, though harder to achieve than I wish. I simply want to wake up without any pain and fully rested and stay that way for an entire day.

Katina Rae Stapleton

P.S.  I saw this lovely quote that represents my wish for all my lupus butterflies:

This is my wish for you: Comfort on difficult days, smiles when sadness intrudes, rainbows to follow the clouds, laughter to kiss your lips, sunsets to warm your heart, hugs when spirits sag, beauty for your eyes to see, friendships to brighten your being, faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth, Love to complete your life.” Unknown

Have Lupus, Will Travel (HAWMC #5)

Today’s HAWMC prompt was: “Go to flickr.com/explore and write a post inspired by the image. Can you link it to your health focus?

When I explored Flickr, I spotted this lovely (copyrighted) picture by Rob Dickenson of Hawea. It reminded me very much of my own travels around the world. When I first was diagnosed with lupus as a teen, I was terribly afraid that I wouldn’t be able to travel or that I would travel, but get sick on the road. Over the years I have had a chance to travel several times to the Caribbean, to Europe and across the United States (even Hawaii and Alaska). I came up with several rules that help make traveling easier for me:

  1. I make sure I have all my medicine, including meds I take regularly and “emergency” meds that I might need if I have a flare.
  2. I plan for proper rest. On my last cruise I went to be around 9 pm every night (crazy early!) because that is what I needed.
  3. I pack things that I can use to battle muscle and joint pain. I always, always, have some sort of heating pad in my luggage.
  4. I always respect the sun. Even though I frequently go to very sunny places, I try not to tempt fate too much. I pack my trusty hat collection, sunscreen and shades and try not to linger in the sun during the heat of the day.
  5. I make sure I have at least one day after the trip to rest before returning to work. This allows me to unwind from the trip (flying sometimes makes me sick) and gear up for the 9-to-5.

If you have lupus and love to travel, what do you do to make your trips go smoothly?

Katina Rae Stapleton  

Beware the common cold

At the beginning of March I came down with what I thought was a simple cold. So instead of resting and treating the cold with proper respect, I kept up a pretty intense schedule, which was a very, very, bad idea. By day three, it was clear that the cold was winning the battle we were in and by the weekend it was clear that my cold was more than a cold.I could barely talk and I had a horrible hacking cough. It felt just like the infection had spread to my lungs, so I became really worried. And I was right to be concerned, because it turned out I had bronchitis,

Bronchitis sucks. For about two weeks, I was absolutely miserable.  Even though I feel much better now, it has been really hard for me to recover fully. I hope that as we enter April, things will continue to turn around for the better.

Now what does this have to do with the Butterfly Lesson?

While colds and bronchitis can happen to anyone, people with lupus have to be a bit more careful to avoid viruses than others.Why? “When you have lupus, you are at increased risk for all types of infections,” according to the Lupus Foundation of America. This is because lupus itself leaves you open to more frequent infections and because certain types of lupus medicine can limit your body’s immune system’s ability to respond.  According to the LFA, you should “do your best to avoid anyone who has a cold or other contagious condition. During cold and flu season, wash your hands often to cut down transmission of infectious germs.”

Beware the common cold! It might seem harmless, but it could really be the bronchitis or the flu.

Take care,

Katina Rae Stapleton


 

I need a do-over . . .

Today I had on one of my favorite pair of boots. They have a low heel (about 1 1/4 inches) and are usually very comfortable. But this evening on the way home, they taught me a Butterfly Lesson: Anticipate obstacles so that you can be prepared.

Here’s the story:

I ride a commuter train that is almost always full. So I wasn’t surprised when I couldn’t find a seat. It was a surprise when no seats opened up and I had to stand all the way home (about 35 minutes).

One of my lupus symptoms has always been leg pain. So as you can image, after standing for 35 minutes my legs were not ok.  My poor babies were so strained that I could barely use the stairs when I got to the train station. I had to hold the rail to walk down the first set of stairs and then use the wheelchair ramp to get to my car on the opposite side. Right now, I am on the couch with my legs propped up.

Since hind-sight is 20/20 I have come up with a couple of options for the next time I catch the evening train. . .

1. I can take a spare pair of commuting shoes to keep under my desk. Fashion critics always laugh at DC commuters who wear tennis shoes with their suits, but they have the right idea.  I have several pairs of walking shoes that would do the job. That way I can wear the cute boots to work and ride home in comfortable flats.

2. I can wait for the next train. Instead of rushing onto the train and then getting stuck standing, I can take a more leisurely approach by taking a seat in the lounge and reading a book until the next train comes. That way I can be the first person sitting on the later train rather than the last person standing on the earlier train.

3. I can ask someone to let me take the handicapped seat. Commuter trains have seats for people with physical disabilities. I should note that I have never actually asked for the seat, because I am too embarrassed. But I would feel way better right now if I had the courage to say, “Excuse me, I have trouble with my legs; Can I please sit down?”

Do you have day-to-day struggles that you would like to redo? Send them to Butterfly Lessons for some tips on how to make things go better the next time!

Take care,

Katina Rae Stapleton

Living your life like it’s GOLDEN!

One of the great things about the internet is that it allows people with lupus to locate others who share the disease and learn from them. One of my favorite inspiration-blogs is written by Juliana Joie, a lupus and fibromyalgia survivor that embraces life to the fullest and is actively working to share her blessings with others.

This afternoon I checked my email and spotted Juliana’s monthly newsletter.  She included a powerful message about making the rest of 2010 fabulous:

“It is a wonderful time to seek clarity inside yourself and choose which goals are the juiciest, richest, and most powerful for you! Remember that saying “No” to some things can mean a great big “YES” to other things!

  • As you reflect on 2010, what accomplishments do you want to savor?
  • What will fulfill your heart’s deepest longing?
  • How will you create the life you love with these precious 12 weeks?”

It was a very timely message for me because I just decided that my end of the year goals are to relax and have a good time. I’ve even adopted a theme song. For the next three months I’m going to live my life like it’s Golden . . .

I’m taking my own freedom
Putting it in my song,
Singing loud and strong,
Grooving all day long,
I’m taking my freedom,
Putting it in my stroll,
I’ll be high-steppin’ y’all,
Letting the joy unfold.

Golden, by Jill Scott

The Butterfly Lesson: Life is too precious to waste. But it is a mistake to believe that you must always be doing something “serious” with your time. Sometimes inaction (rest, relaxation, a deep tissue massage!) is what you need.  Other times you should slip on a pair of your favorite shoes and dance, curl up with the television, read a good book, spend time with your friends and family, or anything else that brings you joy.

If at first you don’t succeed . . .

I had a great time blogging for Invisible Illness Week. I would come home from work, type my blog for the next day, and then watch a little bit of tv, check Facebook & Twitter and then call it a night.  It was fabulous! At the end of the week, I thought to myself, “It will be super easy for me to blog at least once a week in the future! After all, I just finished blogging every day.”

This is a lupus blog, so I am sure you can guess what happened next.

The past two weeks, I simply ran out of steam.  I have been beyond tired and to add insult to injury my arm hurt something fierce.  No matter how much I told myself, I should blog today, the couch ended up being a much more attractive destination than my computer.  Once I figured out that I needed to rest more than I needed to blog, I grounded myself.

The good news is that I finally have some of my mojo back and am rejoining the bloggerverse.  What really struck me as I sat down to the computer tonight is how often something like this happens to people with lupus. We make plans and create expectations for ourselves and others based on feeling well and then can’t pull them off if we have a flare.  That really sucks.  For me the process goes something like this:

My mind says:

FULL SPEED AHEAD!

but my body says:

S….L…O…W….D…O….W…N….

or even:

OH NO YOU DIDN’T!

My personal strategy for “slowdowns” and “Oh-no-you-didn’t” has been to rest and then regroup.  I check to see if it is possible for me to try the activities I missed while I wasn’t feeling well. Sometimes this is achievable, sometimes it is not.

For example, during the past two weeks, I missed writing two blog posts.  Since I have not discovered the secret of going back in time, there is no way for me make them up.  But missing those two posts doesn’t prevent me from writing more blogs in the future—after all it is my blog and I chose not to fire myself!

What I am going to do is “bank” some blogs for the future now that I am feeling better.  That way if I am feeling not-so-great, I will have some reserve blog posts so that I won’t end up with two week gaps anymore. Or if I can’t manage that, I will…..drum role please…..simply not have any posts to blog! The very worst that can happen is that you will not read my blog anymore. The best that can happen is that you will wait for me to come back. Either way, I will still be back later to blog more Butterfly Lessons.

That brings me to the moral of this story, otherwise known as The Butterfly Lesson:  Take a break! There is nothing wrong with taking a hiatus from your activities if you aren’t feeling well. It’s not quitting, because you can always try again. There is also nothing wrong with quitting if that is what is necessary for you to feel better.*

Take care,

Katina Rae Stapleton

* Sometimes quitting is the very best thing you can do! See my earlier post on knowing when to walk away and knowing when to run.

You’ve Got to Know When to Hold ‘Em: Can the Gambler by Kenny Rogers help you prioritize your activities?

“Every gambler knows that the secret to survivin’ is knowin’ what to throw away and knowing what to keep.” Kenny Rogers, the Gambler.

September has been one of the busiest months of the year for me.  It presents me with a challenge: how much activity is too much? In my heart and mind I am a social butterfly, but my body doesn’t always agree. When I overdue it, my body says: “Did you forget that you have a chronic illness? Don’t you need your rest?”  This week has been particularly overscheduled. According to my calendar, I was scheduled to:

  • work my 9-5 job with a 45 minute commute in each direction.
  • attend a church committee meeting on Wednesday evening.
  • attend a Saturday morning sorority meeting.
  • have three appointments after work.
  • go to yoga after work.
  • hang out with a friend on Thursday night.
  • hang out with other friends on Friday night.
  • And, write the Butterfly Lessons blog every night this week.

I am tired just typing this list. In fact, I think there are more after-work activities than there are available hours in the evening.

When I really, really, looked at my schedule, I decided it was time that I invoked The Gambler, my lupus theme song, in order to make some crucial decisions about which activities were really important to me and which could be cheerfully deleted.

I love using the lyrics from the Gambler to decide! Here is how I go about it . . .

  1. You’ve got to know when to hold em: “Hold-em” activities are things that you really want to do (or have to do) and it is worth it to you to do them even though they use up your energy.  For example, one of my priorities is to spend more time with my friends, so I do my best to “hold”  one spot in my week to hang out with them.
  2. Know when to fold em:  “Fold-em” activities are things you would like to do, but could wait for another day. They can be deleted from your schedule like this: “I’m sorry, I really would like to do XYZ, but I can’t make it this week.  I can do it on next (week, month, year) instead.”
  3. Know when to walk away: “Walk-away” activities are things that shouldn’t be on your schedule, because you don’t want to do them, don’t have to do them, and/or can’t see any purpose in doing them right now. Who knows, though, you might change your mind later, so you should leave your options open: “I’m sorry, but I won’t be able to attend XYZ, but thanks for thinking of me.”
  4. Know when to run:  “Run-away” activities are almost self-explanatory. They are energy black holes that should be avoided or activities you don’t like or want to do at all. Politeness is key, but you should also get straight to the point. For business, try: “I’m sorry, but I don’t think that this is something I want to be involved in right now, but thanks for thinking of me.” For social situations try: “I am going to have to pass, but thanks for thinking of me.”

The Butterfly Lesson? Consider this great advice from Ashleigh Brilliant: “Sometimes the most urgent thing you can possibly do is take a complete rest” and this advice from me: “When in doubt, cut something out!” Notice that three of the four “Gambler categories” involve not doing the activity. This will leave you with a smaller set of activities that are most meaningful to you. I won’t tell you which activities I dropped, but I narrowed down the list considerably and am now have enough time to curl up on my couch and catch up on a good book.

For other great tips on how to deal with having an invisible illness check out National Invisible Chronic Illness Awareness Week (September 13-19, 2010) started in 2002 by Lisa Copen. The event features a variety of ways to get involved, including a free virtual conference on September 13-17 with speakers each morning from 10:30 am – 12:00 pm, USA Pacific time. You can also go to the website to download a free 80-page ebook on living with an invisible illness.

Take care,

Katina Rae Stapleton

P.S. A Butterfly bonus: I think this is one of the funniest videos ever: Kenny Rogers performing the Gambler with the Muppets!