It’s the first of the month, so it’s time for another Purple Spotlight! Every month, I like to put the “purple spotlight” on someone who has lupus, has been affected by lupus, or is an advocate for lupus. That is just my way of raising #lupusawareness and letting others know that you are NOT alone!
This month, I am featuring a friend of mine. A beautiful person, inside and out, Teri Henderson.
“Tragedy should be used as a source of strength.”
I cannot remember a time before my mom was sick. I remember the summer she got diagnosed. My little brother and I were sent to Arkansas to stay with our grandparents while my mom went through a battery of tests and appointments with doctors in Dallas.
Before my mother’s first transplant she did dialysis at home. She would come home from work and get hooked up to the machine for several hours. Because of her weakened immune system, I used to sit next to her wearing a mask so that I would not spread any germs that might cause her to get sick.
After her first failed kidney transplant she was forced to go to a dialysis center so that she could be carefully monitored. My mom worked full time while being required to complete dialysis three times a week. I remember going to the dialysis center with her sometimes after school to keep her company.
Even though my mother died due to complications from a second failed kidney transplant, her story should not be seen as a sad one. She is a testament to the fact that one can live a full and fulfilled life while battling diseases like Lupus. My mom traveled, lived, and loved during her time on earth. Proof that no matter what obstacles you face you can still live a happy and full life. My mother’s illness taught me about being resilient and being brave. Without her example I would not be the strong person that I am today.
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Teri, thank you so much for sharing your mother’s story! You are such a strong person–a trait I am sure you learned from your mom! Peace and blessings!
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Some things are better left unsaid. The same is true when speaking to someone with Lupus. After reading Natasha’s post about Things You Should Never Say to a Single Mom on Epic Mommy Adventures, I was inspired to write a similar post, but for Lupus Warriors. Thanks Natasha!
I did my research, and found that there are a couple pages that also talk about the do’s and don’ts when talking to people with lupus! Like this one, and this one too. So, I just had to share my thoughts too!
I began this blog to inspire individuals with Lupus and to let them know that they are not alone. That someone out there cares about them, and that there is a life after the diagnosis. But today, I had to share some words of wisdom with those people who don’t know what Lupus is and how it affects us (but you can learn all about it HERE.) Hopefully, this will help them out just a little.
Image via Google Images.
“WHAT’S THAT ON YOUR FACE?”
I personally have never gotten this from anyone as Lupus has not affected my skin. But, for many of us, Lupus causes skin rashes. The most common is the butterfly-shaped rash that appears on the face. If you do not know about Lupus, sure, you can wonder what it is. But, don’t you dare ask about it. Even if it wasn’t a mark of Lupus, that is a personal question that shouldn’t be asked. Especially if you don’t know the person very well. Just keep that comment to yourself and Google search it later.
“YOU’RE OVER EXAGGERATING. IT COULD BE A LOT WORSE.”
My biggest pet-peeve is when people assume that Lupus isn’t that bad. Just because I don’t reside in a hospital bed does not mean that I’m not in pain. A boss of mine once told me that he believed I was exaggerating my condition. I was infuriated! If it wasn’t that bad, I (and every other Lupus warrior out there) would not have to take 4+ medications every day just to stay healthy and be able to come to work. Please do not think you know the struggles we face unless you have Lupus too. I’m not saying that Lupus is the worst thing in the world. I’m only saying, cut us a little slack sometimes. It really IS as painful as we say.
“YOU DON’T GET OUT ENOUGH.”
Sometimes, I feel as though my friends think this about me. I mean, with twins and Lupus, it’s hard to get a 5 minute shower every day, let alone get out of the house. If I was able to wake up every day without out any joint pain and swelling, fatigue, muscle cramps, headaches, and whatever else I have that day, then YES! I could get out more often, but until then, I’m happy at home. You should be okay with that too. But, if you aren’t, let’s act like you are.
“I’M SO SORRY.”
This may seem like words of sympathy, but it’s just the opposite. Saying ‘I’m sorry’ implies that something bad has happened. That the situation the person is in needs condolence. It makes us feel even worse about our condition. No need to be sorry, we didn’t ask for this to happen. It just did, and we are making the best of it. Instead, show us that you’re sorry by being there when we really need it. We will appreciate that a lot more, trust me!
“MY BEST FRIEND’S MOM’S COUSIN HAS LUPUS AND IS DOING GREAT!”
“MY COUSIN’S MOM’S BEST FRIEND PASSED AWAY FROM LUPUS.”
Lupus is a chronic disease. It affects each person differently. If you know someone with Lupus, please try to restrain from comparing. It just reminds us of how painful our situation is. Likewise, if you can help it, don’t mention that someone you know passed away from Lupus either. We are sorry for you loss, of course. But, it just makes us wonder if we will be the next one to die. That’s a scary thought that never seems to go away for most of us, let me just tell you. So, we would rather not have you remind us of it.
“YOU HAVE SO MANY BRUISES. IS EVERYTHING OKAY?”
Yes, everything is okay. We are not victims of abuse, just victims of prescription drugs. Many of us take medications that cause our skin to thin, which allows for easy bruising. I have a bruise for everything! When I was in the hospital to deliver my twins (you can read my story HERE), I got a bruise from the IVs, from the epidural, even from laying in the bed too long. So. Many. Bruises! And before I was diagnosed, my skin was clear as day. Personally, this is the most annoying question to hear. Even if I didn’t have Lupus, I think it’s my business why I have so many bruises.
“HAVE YOU LOST/GAINED WEIGHT?”
I thought it was common knowledge never to ask about a woman’s weight. Well, apparently I was the only one that knew this. Because of Lupus, my weight easily fluctuates. One day I’ll gain water weight. The next week I might lose weight because of a decreased appetite. And Prednisone… Oh, Prednisone! That drug just puts pounds on for no reason. So yes, I may blow up and deflate like a balloon, but let me worry about it. Even if you’re trying to give a compliment, it might just be better not to mention it.
“YOU WON’T BELIEVE HOW TIRED I AM.”
Actually, we do. As a person with Lupus, I am ALWAYS tired. I could have just woken up from a glorious night of beauty sleep, and I’ll be tired within the hour. Our bodies are working so hard to fight off the bad things (that don’t even exist), that we are constantly fatigued. So, if we are having a who’s-the-most-tired competition, I think we have you beat.
But, the number one worst thing you could possibly say to someone with Lupus is…
“BUT YOU DON’T LOOK SICK, SO IT CAN’T BE THAT BAD.”
Yes, it really IS that bad! Why would we lie about being in pain 24/7? I asked a few of my buddies that also struggle with Lupus, and they agreed that this comment is by far the most frustrating. Lupus is a chronic condition that affects the immune system. It can take over any organ of the body and cause damage. That means the skin, the heart, the lungs, the kidneys, the eyes, anything! And for most of us, it affects more than one place. It is a choice for us not to look sick. We CHOOSE to look this way. We CHOOSE to act this way, to live this way! I personally am not going to sit around and cry ‘Whoa is me!” I’m going to live my life, and enjoy it! My children won’t suffer because of my condition. I’m actually a better mom because of it. And for someone to have the audacity to measure my pain based on my appearance and way of life, that’s just uncalled for. So refrain from saying this to someone with Lupus. It just signals the ignorance that people have toward Lupus. It really is a struggle to live with Lupus and to educate others about a disease that can be so transparent. Please believe us when we express ourselves to you.
Lupus Warriors, am I right or what? Do you have anything to add to my list?
There are so many things that could be taken the wrong way when talking to someone with Lupus, or any chronic condition really. Be careful of what you say. You wouldn’t want to put your foot in your mouth.
For those of you who don’t have Lupus, please consider my list when you encounter someone who is battling this condition. If you don’t have anything nice to say, it’s better not to say anything at all. Sorry for my rant today, but somebody had to do it! xo Chels
Welcome back blog friends!!! I hope you enjoyed your 4th of July holiday. I sure did! My brother and his family came to town to visit and it was such a joy to see them. It’s always a good time when we get together. But back to business…
This past week, I attended the “Coping with Lupus” webinar that the S.L.E. Lupus Foundation provided. Can you “attend” a webinar? I didn’t go anywhere but to my couch, but that’s neither here nor there.
As someone who wants to know as much about lupus as possible, I am always signing up for emails and newsletters to stay updated on my disease. I am glad that I attended this webinar. They had some great information to remind us #lupuswarriors that we need to enjoy life, and not worry about the struggles we face day in and day out. Easier said than done.
I came up with a list of 31 do-able ways to cope with lupus. In the words of Roxie Hart from Chicago (Oh, how I love that movie!), “You can like the life you’re living, and you can live the life you like…” Just choose to make your life worth living!
- Find a good rheumatologist. This speaks for itself.
- Once you’ve done that, actually go to your rheumatology appointments.
- Look at the big picture. Know that coping with lupus affects all parts of your life. Finances, emotions, physical and mental health, everything!
- Create an action plan. Write down your goals for your new lifestyle and how you will achieve them. (I created this goal planning sheet, and it’s worked wonders!! You can download it here for free.)
- Know your limits. You can’t do it all, even though you may think you can.
- Follow a nutritious diet. Keep a food journal. I like the MyFitnessPal app. It’ll show you the calorie content and nutrient breakdown of the foods you eat. You’ll be amazed at how much you consume on a daily basis! Great for helping with weight loss too!
- Manage stress. Do like I did, and blog! Or if that’s not best for you, find out what is and do that!
- Make changes at your own pace. It has been said that it takes 30 days to create a habit. Slow down and make your lifestyle changes matter.
- Find the best medicine for you. Talk to your rheumatologist (and any other physicians you may have) and choose the medications, and dosages, that work best with your lifestyle.
- And again, no use doing that if you don’t actually take your medications.
- Find ‘Pinspiration’. Follow lupus boards on Pinterest, like this one.
- Donate to lupus research. You can do that by supporting Mommie for a Cure!
- Be honest. Don’t be ashamed to tell your doctor what you are going through.
- Write everything down. Keep a journal listing the symptoms you deal with on a daily basis. That way, when you see your rheumatologist, you won’t forget to bring them up. (This happens to me ALL the time!)
- Find support groups. It’ll only be good for you if you express yourself to people who understand and can relate.
- Get informed of what you are dealing with. Know the facts about lupus and any other lupus-related conditions you may have.
- Don’t smoke. That’s a no-brainer.
- Don’t drink alcohol. That much.
- Know the possible side effects of your medications. If they are too scary for you (because they definitely can be eye-opening) or they do not work well with your lifestyle, see item #9.
- Express yourself. Share your story. If you’re feeling tired, say it. If your body hurts, share it. If you can’t remember where you placed your coupons after you spent hours cutting them out, finding sales, and finally getting to the grocery store (obviously this is a personal rant) then call your best friend and tell them! And, that’s exactly what I did And, I saved 50% on my groceries that day (once I found my coupons)!! Just saying.
- Call the Lupus line. I didn’t know about this until I saw it in the webinar. Google it and see if there is one for your area.
- Get involved in local chapters. I’m involved in my local Lupus Foundation of America and Alliance for Lupus Research chapters and I love it!
- Don’t exclude yourself. Just because you have lupus doesn’t mean you can’t enjoy yourself with friends. Get out and have fun! After you take your meds, of course.
- Attend lupus walks. Get a team together, decorate some cute t-shirts, and feel the burn! I actually helped to plan a local lupus walk. So exciting! You can find out more about that here.
- Eat the rainbow!!! Here’s 7 reasons why.
- Exercise. I’m not one to love the gym, but there are plenty of other fun ways to burn some calories.
- Be realistic with what you can and cannot do. This goes hand in hand with exercise. If you can’t run (maybe you have bad knees due to lupus, that’s my
excusereason), then you can do yoga, or tai chi, or even walk in your neighborhood!
- Tell your coworkers. The more they know about what you are coping with, the more they will be willing to understand when you are dealing with flare ups and side effects.
- Manage your symptoms. Be proactive and take control of your condition. I like to take Aleve, along with my prescriptions. Some days, the medications don’t help with everything, so I know the Aleve will help with the aches and pains.
- Get your rest. Count those sheep and get those Z’s.
- Live life as you did pre-diagnosis! This is so important. Keep your head up and stay motivated!
“Living well is an art that can be developed: a love of life and ability to take great pleasure from small offerings and assurance that the world owes you nothing and that every gift is exactly that, a gift. ” -Maya Angelou
Living with lupus can definitely be a life worth living. You just have to make the choice to live well. I hope you may have found at least 1 way, if not 31 ways, to live your lupie life to the fullest! Shoot me an email and share your lupus story with me at firstname.lastname@example.org! It really makes my day to get emails from you guys saying how you’ve overcome your battles with Lupus! xo Chels
While you’re at it, check out these other Lupus posts!
Every month, I like to put the “purple spotlight” on someone who has lupus, has been affected by lupus, or is an advocate for lupus. That is just my way of raising #lupusawareness and letting others know that you are NOT alone!
This month, I am featuring a friend, sister, and fellow lupie- Shakira Clardy. Read more
Why You Should Drink More Tea
As I lay in bed with my steaming hot cup of decaf Chai tea, I wonder… what makes tea so gosh darn good?! Hence, I decided to write this post. As you can see, I need very little inspiration to go on a senseless rant. Well, I’ve got news, and news is
never sometimes senseless! Though this is not, I assure you. You ready for it?! DRINK. MORE. TEA! Drink more tea because it is actually good for you! With all the benefits it has, one cup a day can keep the doctor away. Forget about those silly apples! If you’re a coffee drinkers, I have no words for you! Maybe this post will help you leave the dark (roast) side behind! Pun intended. So sip on, serial sippers, sip on! *burns tip of tongue* You’re on to a beau-tea-ful way of life! Here’s just a few reasons why I continue to drink tea every day, besides the fact that its yummy of course….
A little pick-me-up.
Many teas are known to boost energy and endurance. This is especially beneficial for workouts. So, sneak in a nice cup of tea before that 5 mile run! It’ll do you some good.
Gets it right. Gets it tight.
Some teas are good at helping you shed a few pounds. Oolong tea (try Teavana’s Spiced Mandarin Oolong Tea! It’s spicy and sweet, sooooo good!) assists in weight loss by boosting your metabolism, while yerba mate teas just fight fat cells in general. I admire yerba’s “straight-to-the-point” mentality!
Add tea to your list of all things green! Green tea has so many attributes, it’s kind of amazing. Green tea helps to protect your skin against harmful UV rays, which are known to cause skin cancers. It keeps you looking and feeling younger, as it works to minimize wrinkles and increase bone strength. It also is a great tea to help you stay in a good mood because it has natural satiety boosters. It’s the real green super food.
Flower power. I can digg it.
Saff-flower that is. Safflower tea drinkers have shown a decreased risk of developing heart problems. I didn’t even know there was such a thing as safflower tea, but I’m definitely going to try it now!!
There’s plenty of other health benefits, like heightened sex drive (ginseng tea), reduced inflammation (ginger tea), and increased digestive health (peppermint tea). I just couldn’t think of any more catchy title phrases…
And, I ran out of tea.
But by the looks of it, I’m well on my way to staying healthy despite my lack of creative juices, or teas, rather. Off to pour another cup! “Stay thirsty my friends!”
With Love, M&W.
As a Lupus Warrior, this topic is something that has been weighing heavily on my heart. Just as a warning peeps, this post is serious. I know I’m usually pretty light-hearted and playful, (not that I’m going to be stern and awful in this post) but I want to show you how important this information is. Your health should be your number one focus. Without your health, you literally have nothing. So, in all seriousness, are you in control of your lupus? Or is your lupus in control of you? Here are 7 questions you should ask yourself to determine which of you has the upper hand. I also included a few bible verses that helped get me through some troubling times. Hopefully, they will do some good for you too.
1. Have you accepted the diagnosis? Don’t think “Why me?” or “I can’t possibly have lupus.” Instead, be accepting of the situation. You have to play with the cards you’re dealt, right? J.K. Rowling said, “Understanding is the first step to acceptance, and only with acceptance can there be recovery.” And she is absolutely right! Acceptance is always going to be the first step when dealing with anything. How can you control a situation if you do not accept that it’s there? Once you have acknowledged that you have lupus, then and only then, can you tackle it head on.
Proverbs 3:5… “Trust in the Lord with all your heart and lean not on your own understanding.”
[Tweet “How can you control a situation if you do not accept that it’s there?”]
2. Do you know the facts? Don’t they say there’s no such thing as a dumb question? Well, ask about lupus!! You have to know your enemy in order to overcome. (Yes, I consider lupus as the enemy.) You can check out this page to learn about lupus, who it affects, and how it affects them. You can also find helpful information from the Lupus Foundation of America. They have a whole section solely dedicated to getting answers for those who constantly battle with the struggles lupus can bring.
3. Are you doing your part? This one is a tough one to accomplish. With all the pills, surgeries, doctors appointments, and tiresome days, it’s hard to do everything necessary to keep your lupus under control. But there is no other option. You have to! Your life depends on it! Follow your physician’s advice. Take your medications when you’re supposed to. (I’m horrible at this!) Put your health first, and focus on how you can “give it all you got.”
Acts 27:22… “But now I urge you to keep up your courage, because not one of you will be lost; only the ship will be destroyed.”
4. Are your lips sealed? Sharing your story is so important! That is the only reason why I began Mommie and Wee–to inspire! The tongue is our most powerful weapon, and we have to use it to beat this monster. Raise #lupusawareness by letting people know what we go through! It’s essential to finding a cure, as well as controlling your condition. So open your mouth and speak out!
Titus 2:7-8… “In everything set them an example by doing what is good. In your teaching show integrity, seriousness and soundness of speech…”
5. Have you gotten connected? Get to know others who are facing similar problems. I promise, it’ll do so much good. Feeling like you are not alone is beyond encouraging. I personally felt the joy of connecting with others as I shared my story on a Linked In group (It’s called Lupus Professionals, if you’re looking to join!)
Relating with others gives you a sense of belonging. We are a community, a lupus community, and we have to stick together! Get connected to other Lupus Warriors around you. You’ll thank me once you do!
[Tweet “We are a community, a lupus community, and we have to stick together!”]
6. Do you live in fear? This is the worst thing to do. Trust me, I know! I was so afraid that something would happen to me prematurely. That I wouldn’t live to see my babies get married. That I wouldn’t even make it through my pregnancy. I spent so many countless hours worrying, and stressing, and crying! But, you can’t live in fear. That’s not living at all. Know that you will be okay, because you will be! Side note: I have to thank my hubbie for helping me realize this one. Gotta love him!
Isaiah 12:2… “Surely God is my salvation; I will trust and not be afraid. The Lord, the Lord himself, is my strength and my defense; he has become my salvation.” (I have shouted this scripture so many times! Definitely a good one to underline, highlight, and meditate on!)
7. Have you said a prayer? This is most important! You can’t do this alone. Ask the Man upstairs for help. Let him know of your insecurities, your fears, your struggles. Even though he already knows, amazing things can happen when you just talk to Him.
James 5:16… “…The prayer of a righteous person is powerful and effective.”
Romans 12:12… “Be joyful in hope, patient in affliction, faithful in prayer.”
Mark 9:23… “…Everything is possible for one who believes.”
I had to give you some extra verses for that topic! It was so powerful!!! But, are you in control of your lupus? Or is your lupus in control of you? The answer, though, should be neither. Because, in the reality of things, you do not control your lupus. He does! Allow Him to take over your situation, and everything will remain under control!
Share some inspirational words and leave a comment! Or even better, share your story with me personally! I’d love to get to know you and learn about your personal battle with lupus! With love,