May 14, 2011

Revealing Lupus Lies (HAWMC)- Day 14

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It seems that there are a lot of "lupus lies" floating about the public/media these days. I'm going to take some time to reveal some of the common ones which are extremely annoying. Just imagine you had an imaginary friend who spoke to you, you could see him but no one else could. You could hear him, but no one else did. He'd poke, prod, and pull prank tricks on you, but no one else seemed to see it! 

Lupus is kind of like that! It's always there inside you. Sometimes festering up and cause painful symptoms like achy joints or swollen knees. Patients are reminded they have this illness every single day and it's about time those of you who don't have lupus took some time to hear us out! School is in session and today's lesson is all about revealing those "lupus lies"!

Lupus Lie #1:  "Tiffany never comes to any of our parties anymore! She's always saying she doesn't have the energy or that she has too much pain, but she doesn't even look sick she's just lazy!"

Truth: Looking good and Feeling good are two entirely different things! You can't tell who has a disease just by looking at them! Not all disabilities are visible. Some of the symptoms caused by lupus are joint pain and extreme fatigue. Instead of judging a friend or family member try asking them how they feel first, and take initiative by going online and finding out how their diagnosed illness affects the human body! You'll be surprised at how strong they are once you read more about their illness!

Lupus Lie #2: "It's not lupus, it's NEVER lupus! Duh, Don't you watch House!

Truth: Dr. Gregory House is WRONG! There are over 1.5 million Americans and over 5 million people worldwide living with lupus. 90% of those affected are female; 10% are male; and 25-30% are children! Lupus does not discriminate; absolutely anyone regardless of gender, age, or race can develop lupus.

Lupus Lie #3: "Lupus? That's a Womens disease! Only females get that!"

Truth: WRONG! 90% of those affected are female; 10% are male; and 25-30% are children! Lupus does not discriminate; absolutely anyone regardless of gender, age, or race can develop lupus.

Lupus Lie #4: "Exercising is harmful for a lupus patient!"

Truth: WRONG! Exercise is one of the only ways for lupus patients to fight fatigue. You don't have to do anything crazy like run a marathon! Mild to moderate exercise is best; try walking and stretching and set a small goal. Try stretching until you're able to walk. Walk in little circles around your room until you feel strong enough to walk a block outside. It's a proven fact that light exercise can ease joint and muscle stiffness.

Lupus Lie #5: "I'm dark-skinned so I don't need to wear sunblock." or  "It's not even sunny out!"

Truth: WRONG! Everyone needs to wear SUNBLOCK with a spf higher than 70 & high uva/uvb protection levels. Even if you don't get sunburned the sun STILL damages skin cells if you're not protected! Regardless of skin color, age, race, ALL lupus patients need to wear sunblock as well as wearing a wide brimmed hat and protective clothing. The sun is the reason many of us have lupus flares & increased fatigue! Protect yourselves!

Lupus Lie #6: "I don't have a positive ANA, so that means I don't have lupus!"

Truth: WRONG! You don't need to have a positive ANA to be diagnosed with lupus. The ANA test is not entirely accurate and sometimes patients receive false negatives/positives. Remember that there is 11 diagnostic criteria and you only need 4 out of 11 to be diagnosed.

Lupus Lie #7: "I feel much better so I stopped taking my medications." or "My medications make me sick so I stopped taking them!"

Truth: Absolutely NOT! Medication is part of our treatment plan. Since there is no cure it is very important for each patient to stay on their treatment plan and discuss complications with their doctor. If you medication is making you feel unwell discuss it with your doctor so they can try switching medications. If you are feeling well  also discuss this with your doctor so they can try tapering your dosage down to see how your body handles it. You should NOT stop taking you medications for any reason unless instructed by your physician first!

Lupus Lie #7: "I don't visit my friend anymore because she has lupus and I don't want to catch it"!

Truth: Lupus does NOT have a cure, but it also is NOT contagious! It is an autoimmune disease in which the immune system becomes over-active and can no longer distinguish between a healthy cell and a virus invader and so when it sends out auto-antibodies which attack the bodies own healthy tissues.

Lupus Lie #8: "I'll never have a baby because I have lupus!"

Truth: Not true. Lupus patients can still become pregnant and experience childbirth. Lupus can make it difficult for patients and miscarriages can happen often which is why you need to discuss pregnancy planning with your doctor first so they can make sure you are not on any medications that can affect fertility or the fetus. As well as having a team of doctors to make sure you have everything you need.

Lupus Lie #9: "I am stuck because I have a cold and non-supportive doctor!

Truth: WRONG! NEVER stay with a doctor who you feel is not helping you. They are PAID to help you and give you the best care possible! So if you feel like yours isn't doing their job properly here's what you do; request a copy of your medical records and find a new one! Try calling your local lupus chapter for doctor referrals! We don't have the luxury of waiting til a doctor helps. We need to become pro-active with our health and take initiative to get the best care possible, because if we don't stand up for ourselves then who will?

Lupus Lie #10: "I'm destined to be alone all my life because of lupus!"

Truth: Absolutely NOT! Lupus does NOT define who you are. You may have lupus but it most definitely does NOT have you! It takes a special caring person to love someone like us. Don't settle, and don't go looking for love let it come find you. Start small with making new friendships, join a support group so you can form friendships with others who know exactly what you're going through. Most importantly love YOURSELF first. It may be hard to accept that you are living with an illness but remember it's not your fault that you have lupus. Accept it and learn to go from lupus to living, because as my favorite drag queen says, "If you can't love yourself how in the heck can you love somebody else! Can I get an Amen!?"

Always loving you,
Tiffany Marie xoxo

Lies and Misconceptions. The truth, as we know, sets us free. Coming across a blog post that hits home because it’s so real and relevant is a wonderful experience. In our health communities we dedicate a lot of time to being honest and forthright with our health information and patient stories – well today we’re not going to do that. Put on your deviant pants – today we’re going to write lies.
Today, let’s make lists (I won’t say the “p” word) that are 5-10 lines long – each line being a lie or misconception about your health condition. You can use lies or misconceptions you’ve heard before or make ones up. Use your personal experience or get elaborate with fiction.
When writing your lies – get creative. Try to find the most interesting way to put these lies or misconceptions into words. Use rich or ridiculous imagery (tap into your 5 senses!) and the best adjectives you can to bring the lies and misconceptions to life. Want to make your lies into a conversation? Try writing your lies in someone else’s voice. If you want to keep your blog honest, you can also switch off between misconceptions and the truth if you want. Line 1: Myth Line: 2 Reality.
How do you normally address misconceptions in your blog or community? How do they play into your role of Health Activist?
What did it feel like to write blatant lies and un-truths? What did this exercise teach you?

May 13, 2011

Healing Through Poetry & Art (HAWMC)- Day 19

Today's post is a "free write", and I chose to share my experience from attending a monthly support group by The S.L.E. Lupus Foundation in New York City.

Health Activist Choice 2. Like our other first Health Activist Choice day, today’s topic is up to you! Write about something you’ve had on your mind, reflect on your HAWMC experience thus far, or check out one of our past prompts from January, February, or March. If you would like to grab a topic being discussed in our Community Forum – that would be an idea. Or, if you want to respond to something that’s happening in the news. Or try another ekphrasis – write about a picture you like or, this time, write inspired by a song instead of a picture. All of these could lead to a great post. Take 15 minutes and write.
Where did you find your inspiration for today’s post? What did you decide to write about? 

So on 'World Lupus Day' the topic was "Healing Through Poetry & Art". We read a poem called The Journey written by Mary Oliver. I'll post an excerpt so you can join in and see what type of emotion it evokes in you, but to read the entire poem click on "The Journey" link mentioned above.

"Mend my life!"each voice cried. But you didn't stop. You knew what you had to do, though the wind pried with its stiff fingers at the very foundations, though their melancholy was terrible..."

I was even inspired to write my own poem, which I'd like to share with each of you below...

How about you? Has poetry or art helped you heal? Or has it inspired you to write something? Feel free to share it!

Loving you,

Tiffany Marie

May 3, 2011

Art Provoked Thoughts (Health Activist Writer's Challenge Month)- Day 12

Image from ReCareered

Day 12: Ekphrasis (writing about another art form). An ekphrasis gives life to a piece of art through storytelling. An example of an ekphrasis is when an artist paints a picture of a sculpture or a poet writes about a painting or even, I’d argue, when a songwriter sings about a movie. The person making the ekphrasis creates an entirely new story and goes “behind the scenes” to describe an aspect that the original art might be missing. An ekphrasis in writing can be completely made-up fiction or it can explain the visual details of the original art piece. Today’s prompt is to create an artistic blog post inspired by someone else’s visual art. 

I see myself as a patient who "breaks the rules." Long past are the days that I would leave my health in the hands of my doctor. These days I find myself speaking out, doing research, and demanding to have my rights respected. Can you honestly say you trust that your doctor will see you as a name and not a number?

Has any of your doctors suggested a non-medicated solution on your bumpy road with chronic illness? Surprisingly I've had just one do exactly that. My nephrologist (kidney doctor) told me to try to make it to church, and to also attempt a meditation class to help me relieve stress and pain from lupus and fibromyalgia. (Surprise! I've been diagnosed with that as well.) 

Besides his suggestions I began digging into the aspects of my diet. Just about everything I eat is processed, comes in a box, package, or container. The first ingredients were usually sugar or corn syrup, and I rarely ate anything fresh from the produce aisle. 

I must say this journey of research, exploration, and trial/error has shown me a new way of living. It's time to break the rules and take matter in our own hands. I'm learning to retrain my taste-buds into eating healthier. Researching the nutritional benefits of different fruits and vegetables is revealing so much. 

If eating healthier and removing the toxic processed foods will help reduce pain and inflammation in our bodies would you do it? Would you stay committed and take charge of your health? I'm learning how tough this challenge can be, but also realizing if I want to LIVE I better learn to start breaking the rules!

learning & loving, 

Tiffany xoxo 

May 2, 2011

Lupus Wikipedia Revision (Health Activist Writer's Challenge Month) Day 11

Wikipedia revision. Whether you’re a fan of Wikipedia, going on endless search-after-searches through tabbed browsing (like I do) or skeptical of its ability to be edited and updated without sources cited – today we’re all Wikipedia writers. Pretend you’re rewriting or adding onto your condition’s page – what sentence or paragraph should be included (in your opinion) on your the page (or the “Health” page)?

Surprisingly the Wikipedia page for lupus is very thorough! If there is one thing I would like to add it would be a continuation on a common misconception about lupus patients as mentioned in my previous post. I would stress the fact that it is often difficult to determine a lupus patient by their appearance.

Lupus patients are often told they don't "look" sick which can be extremely frustrating for a patient who is experiencing unbearable pain, overwhelming fatigue, and a long list of other symptoms. Lupus is coined as an "invisible illness" because most patients don't LOOK sick! This is why it is important to read up and become educated on the extensive damage lupus can do in a person to realize though one may not look ill they most definitely are!

If you had a chance to revise the Wikipedia page for your illness what would you submit?

Loving you always,

Tiffany XoXo

The Lupus Misconception (HAWMC)- Day 10

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Today's Post from the Wego Health (HAWMC) for Day 10 is about sharing secrets. To share with the public a secret or misconception about our illness that we'd like to make known. 

Post Secret. You know the beloved PostSecret blog? Today’s prompt is to write down a secret that …really isn’t a secret. As a Health Activist, you have disclosed in the online space – but perhaps people you interact with and help have not. Additionally, perhaps aspects of your condition remain “secret” to the public. Awareness is our focus today. The catharsis related to sharing something thats been on your heart, perhaps weighing you down, is what makes PostSecret even more powerful.

I'm going to paint a picture and I want you to imagine it with me.

It's seven A.M. and you have been tossing and turning for over eight hours. Luckily you've been reminded to take your morning medication by a repetitive annoying phone alarm. The challenge is making it out of the bed. Cheeks throb red with exertion as you attempt to inch your legs over the side of the bed. Each movement of a joint is a painful struggle. Desperately pushing your limits you extend an elbow, bend a knee, lift your head, steady your back...all in the effort to stand. The room spins. However, you are not done. Dare I attempt to walk? If only I had the magical powers to summon my medication but alas I am not Harry Potter.

Arms wobbling as I aim to take that first step. Un-clenching my mouth...really it's a wonder I've any teeth left at all. Mechanically almost robot-like I make my way to the stairs. My tongue gets dry and suddenly my throat constricts tightening like a boa constrictor. My stomach though empty struggles to crawl it's way out of my mouth and I collapse in my efforts to keep from upchucking my insides. 

I refuse to lose this battle and so I press on. My limp limbs have an entirely different opinion. "I think I can, I think I can" becomes a mantra. Floor bound I slither to the stairs. Inch by bone wrenching inch. Step by step. At this point the pain has become monotonous. It never quite leaves you, curling around each muscle, joint, limb until it is intertwined so deep in your being that and you cannot distinguish what it means to be free of agony. Seconds stretch into minutes which feel like hours, and finally I have found myself in the kitchen.

Grasping the kitchen counter I feel a small wave of panic creep upon me. What was it I came down here for? Am I hungry? A brush of nausea assures me that I am not. Eyes clench in a flurry to provoke an answer. My mind it seems has a forecast of fog, with thick clouds on the horizon. Confusion. Once again seconds stretch into minutes which feel like hours. This forecast of "fog" which replays like a broken record week after week chips away at my sanity. The microwave blinks in annoyance; eighty-thirty. Above it an empty pill bottle with a reminder to call in refills and suddenly I remember. My medication.

My arm groans as it reaches for the bucket with my name on it. Orange bottles, white bottles, green pills, yellow pills. It is Thursday which means I have to take the dreaded chemo-drug. Slowly I struggle to straighten swollen stiff fingers. Inhale. Forehead veins throb, teeth grind, pain grows, tears form, and I am grateful there is no one to witness my weakness. One, two,, eight, nine...until I've reached twelve. This is only my morning dosage. Breakfast is a far stretch of my imagination and I settle for a vanilla Ensure. Medication taken.

I calculate how much energy it will take to make it up the stairs to my bed, and the mental chanting begins, "I think I can, I think I can"...its amazing how seconds stretch into minutes that feel like hours. Pulling my body up with my arms my brain attempts to drown out the silent screams of pain bouncing within its walls. Just a few steps more I say aloud. Fingers touch the sheets. Exhale. The last thing I remember before my mind lost consciousness was, "I made it." Nearby, the bed clock reads: Ten o'clock. 

The next time you see a friend, co-worker, or family member who was diagnosed with a chronic illness. Think before you speak the words, "BUT YOU DON'T LOOK SICK!". A person's appearance is not always an indicator of how they're feeling on the inside, or the ordeal they must overcome each day.

Have consideration for their feelings and the trials and tribulations that they're going through. Ask them if they need help, or need to rest. Contrary to popular belief chronically ill patients do NOT want to lay in bed all day. We MISS the "us" before we became sick, and every rude, snide, and ignorant remark about how we don't look sick stabs a knife in our hearts which are already struggling to live.

I never imagined that being judged by appearance could have a negative impact on someone's life until I was diagnosed with lupus. There are so many misconceptions I want to share about lupus, but this is the one that pains me the most. I chose to reveal this misconception because I am tired of the rude whispers, and ignorant statements. 

Today I attempt to break the stigma surrounding lupus, and many other autoimmune disease. I will raise my voice for every child who was teased at school for having blue toes, a sister who was called lazy because fatigue overwhelmed her, a brother who was classified as fat when steroids was the culprit. No! We are warriors who are struggling to fight a battle against an invisible illness that is occurring within us! So don't you dare stomp on our spirits with hurtful remarks! Have respect for our struggle, our fight, against lupus!

Is there a misconception about your illness that you wish to reveal to the world? Go on and share it.

Stay strong my brave butterflies & iron-willed wolves, together we are strong!

Loving you,
Tiffany xoxo