Category Archives: Feeling Bad

Congratulations, You Have Lupus (#HAWMC 28)

Today’s topic for the Health Writer’s Activist Month Challenge is to write about a “first” in your life: “Write a post about the first time you did something. What is it? What was it like? What did you learn from it?”

I decided to write about my “first” diagnosis of lupus. As a young teen in middle school, I felt “kind-of-bad” two and three days of the week. I would get tired, zone out while doing chores, and frequently had headaches, stomach cramps, muscle pain and the strangest “acne” across my cheeks.

For about two years I went back and forth to different doctors. My pediatrician had me tested for everything from lead poisoning to lyme disease. It wasn’t until I had a seizure in high school (which my mom writes about in A Mother’s Journey), that I saw a rheumatologist who finally diagnosed me with lupus.

con·grat·u·la·tions: an expression of joy in the success or good fortune of another.

That diagnosis was the best news I had in a long time. While I was terrified by having an autoimmune disease, I was relieved that my symptoms had a name. There wasn’t some phantom bad mojo that was stalking me; instead, I had a real, honest-to-goodness medical problem that now could be treated.

That diagnosis was a blessing. I believe to this day that my early diagnosis (and treatment) is what helped me have such a full life over the last twenty plus years.

Katina Rae Stapleton

PS. If you are concerned that you or someone you know may have lupus, check out Diagnosing Lupus, a resource provided by the Lupus Foundation of America. Then contact a medical professional for more information and assistance.

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Five Challenges & Five Victories of Lupus (#HAWMC 27)

Today’s Health Activist Writer’s Month Challenge Prompt is:

“Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.”

So, without further ado . . . .

Top 5 Most Difficult Things About Having Lupus for 20+ Years

1.    Lupus is painful
2.    Lupus is exhausting
3.    Lupus is “mysterious” & hard for people to understand
4.    Lupus gave me “Funny”, sensitive skin
5.    Lupus can affect any part of my body at any time

 Top 5 Small Victories That Have Kept Me Going 20+ Years with Lupus

1.    I developed an “Iron Will” to survive and thrive
2.    I do not take feeling good for granted
3.    I discovered that I have wonderful family & friends that love me
4.    Lupus provided inspiration for me to write
5.    Telling my story helps me help others with the disease

Keep strong and carry on,

Katina Rae Stapleton

P.S. In Dinner for Five I wrote that I would have loved to meet Orison Swett Marden, the author of An Iron Will. This is one of my favorite passages:

“Yet in spite of all this, in defiance of it, we know that an iron will is often triumphant in the contest with physical infirmity. Brave spirits are a balsam to themselves: There is a nobleness of mind that heals Wounds beyond salves.”


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

Love Your Life and What You’ve Been Given (#HAWMC 22)

Today’s HAWMC prompt is to write a reminder inspired by the blog “The Things We Forget” http://thingsweforget.blogspot.com/.

I am actually quite fond of inspirational reminders. But instead of traditional sticky-notes I like to hang inspirational art. This weekend I found a new print for my kitchen called “Living Life” by Bonnie L. Mohr.

My favorite line from the print is “Love Your Life and What You’ve Been Given” because it is very easy to lose sight of life’s joys when you are plagued by pain and fatigue.

“Live for Today, Enjoy the Moment” Bonnie L. MOHR

Take Care,

Katina Rae Stapleton

Starburst Candy Cures Lupus! . . .I Wish (#HAWMC 20)

Today’s HAWMC prompt is:

Write a news-style article on a miracle cure. What’s the cure? How do you get the cure?

In my other life as a pop culture expert, I fell in love with tabloids. So my story is short, sweet, and ready for the National Enquirer.

Starburst Candy Cures Lupus!

Dr. Katina Rae Stapleton has discovered the cure for Lupus pain – Starburst Candy. Katina has had lupus since she was a teen. One year she went South for a family vacation and was bed-ridden at her grandparents’ homes for two weeks. She ran out of prescription pain meds and decided to pretend that Starbursts would stop the pain. It worked, but Katina was sure the cure was only in her mind. Years later after she went to graduate school and learned how to conduct scientific studies, Katina secretly tested the Starburst cure on herself. Every time her muscles hurt she eats Starbursts instead of taking painkillers. She gained a lot of weight, but is now pain-free. Even if this turns out to be a placebo effect, Starbursts rule.

Disclaimer: This story is sort-of-true. Katina really was stuck in bed for TWO weeks and ate packs and packs of Starbursts to keep from crying. Even though she still believes in her heart-of-hearts that candy makes the world a better place, she can’t prove that Starbursts stop lupus pain. If you have lupus pain, get proper medical treatment. And perhaps a massage (if your doctor thinks it is a good idea).

Does Clutter Make My Butt Look Fat? Lupus, Exercise, and Clutter (#HAWMC 18)

“Fat, thin, cluttered, clean-I want you to find the life that makes you happy.” Peter Walsh

I am a huge reader and often find inspiration and practical advice in books. So when I read today’s HAWMC challenge, I headed to my bookshelf and pulled down Does this Clutter Make My Butt Look Fat? by organizer Peter Walsh.

Open a Book. Choose a book and open it to a random page and point to a phrase. Use that phrase to get you writing today.


Peter’s book inspired me to think about my personal relationship with lupus, exercise, and clutter:

When I am tired or hurting, I tend to put things down and just leave them. And if taking a nap, exercising, and doing my laundry are in direct competition, napping wins most of the time.

Lupus flares make me tired,
Being tired leads to clutter,
Seeing my clutter makes me tired,
Being tired leads to lupus flares.
Lupus flares make it hard to exercise,
Lack of exercise leads to weight gain,
Weight gain makes my lupus flare,
Lupus flares make me tired.

I found this passage from Does this Clutter Make My Butt Look Fat? when I turned to a random page. I think it is very powerful.

The only person who can create the life you want is you. Like it or not, no knight in shining armor is coming to make the situation better for you. Your destiny is firmly in your own hands. If you are unhappy with the life you have or unsatisfied with the body you have, then you should change it. . .

The Butterfly Lesson is: while I can’t cure my lupus, I can exercise and get rid of clutter.

Take care,

Katina Rae Stapleton

Avoid the Sun and Listen to Your Mother: A lupus cautionary tale (#HAWMC 17)

Today’s HAWMC prompt is dear to my heart because I have learned many, many Butterfly Lessons the hard way.

Learned the Hard Way. What’s a lesson you learned the hard way? Write about it for 15 today.

My favorite hard-headed story is about the sunbathing. Probably anyone who has ever heard of lupus knows that one of the illness’ distinguishing characteristics is sun sensitivity. To sum it up in a catchy phrase:

“The Sun is not my friend.”

I am pretty good at minimizing sun exposure, but must admit that I still love to travel to sunny places. I have gone to the Caribbean several times and even went to Hawaii and Tulum, Mexico (which is crazy hot).

Each trip I managed by keeping out of the sun during the heat of the day, always wearing a hat and sunscreen, and become best friends with beach umbrellas. The trips have gone well though I sometimes get sick towards the end.

For me, sun exposure is kind of like Russian roulette, because I don’t get sick every time (but when I do get sick, it is very, very, bad).  For example:

•    I took a trip to Miami and basically only went from the airport to my hotel.  I was curled up in the bed with stomach pains for 2 days.
•    I went to the Epcot Center and waited in line to get into the park for about 15 minutes. I only made it about 100 hard yards into the park before I was overwhelmed by pain. I had to return to the hotel and stayed in bed for about 2 days. (I am kind of sad that I never actually got to see Epcot and am trying again this summer. Maybe I can get a Drs. note to bypass the line?)
•    I went to Myrtle Beach, South Carolina and walked from the car to a shopping center and had a flare. I was sick the whole rest of the trip.

In all three cases above, my sun exposure was minimal, but the pain was maximal. It hardly seems fair. But one family trip I took in graduate school ended badly when I completely ignored my common-lupus-sense and ignored my mother’s sage advice (recreated below) . . .

Mom: Katina, do you think you should be in the outdoor pool so long in a swimsuit? You know the sun makes you sick.

Katina: Why are you such a kill-joy? Can’t you see I am enjoying myself? Can’t you let a sista hang out with her cousins in peace?

Mom: Ok. It’s your funeral.

On this trip, I didn’t get sick right away. I was lulled into thinking that all my pool-side sunbathing would have no negative consequences. But I was completely wrong. When I went back home, I had a “fatigue” flare and could not get out of bed for an entire week.

Katina: Mom! I’m sooooooo sick. And I live alone. Why, Why, Why do I feel so bad?!?!

Mom: I told you so.

The Butterfly Lesson: Avoid the sun and listen to your mother.

Take care,

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

Even though I hurt I smile: A Lupus Theme Song (#HAWMC day 11)

Today’s HAWMC theme is:  Theme song. Imagine your health focus or blog is getting its own theme song. What would the lyrics be? What type of music would it be played to?

I absolutely love theme songs. So far I have blogged about several songs I think provide valuable lessons about living with lupus: The Gambler, Golden, My Favorite Things, and I’m Walking.

For today’s theme song, I picked one of my favorites from Kirk Franklin called    I Smile. The song really speaks to the struggle that many people with chronic illnesses have to stay upbeat and cheerful in the face of incredible pain.

Today’s a new day, but there is no sunshine.
Nothing but clouds, and it’s dark in my heart
and it feels like a cold night.
Today’s a new day, but tell me where are my blue skies,
where is the love and the joy that you promised me
tell me it’s – alright. . . . .

I smile, even though I’m hurt see I smile,
I know God is working so I smile,
Even though I’ve been here for a while
I smile, smile.
It’s so hard to look up when you’ve been down.
Sure would hate to see you give up now
You look so much better when you smile.

I hope this made you smile!

Katina Rae Stapleton

Dear 16-year old me (#HAWMC 10)

Today’s HAWMC prompt is:  Dear 16-year-old-me. Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of?

I’ve had lupus since my early teens, so today’s prompt was very touching to me. I have so many things that I would tell myself, but I think this letter captures the most important.

Katina Rae Stapleton

————————

Dear Kat –

I just wanted you to know that everything will be all right. I know that it is very scary to have lupus. You hurt a lot, it’s hard to concentrate, and having “funny skin” as a teen really sucks. But I am here to tell you that you already have what you need to finish high school, go to college, and even graduate school if you want. You are a smart girl, and most important, you are a fighter. Reach inside and channel that inner strength that will allow to thrive against such a rotten deal of the cards. Your family and friends will be there to help you along the way. Cherish and appreciate them. Despite lupus, you are truly blessed.

Love,

Yourself (just older, wiser, and a bit more fabulous).