4 Ways I Stay Cool for the Summer With Lupus

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It’s officially started. That all-too-familiar feeling of sweating through my button-up shirt as I walk from the subway station to work. Soon it will be summer and as unpredictable as the weather has been lately, you can count on one thing: It will be extremely warm and muggy outside. When I was first diagnosed with lupus, I used to think I wouldn’t be affected by the sun. I was wrong on so many levels.

Being a male, I’ve never experienced hot flashes, but I feel like I’ve had about 20 of them this month alone. For lupus sufferers, summer can be a miserable season. Overexposure to the sun can mean rashes on parts of your body that are exposed to the sun, overheating (which is my main symptom), and just flat-out fatigue. There’s nothing like stepping out of the shower and sweating about a gallon’s worth of sweat before getting dressed. I usually take the subway to get to work, but in the summer I use my car more because walking a block means that I’ve sweat through my nicely ironed button-up shirt and khakis. Nothing says “young professional” like sweat stains.

Here are some useful items that make my summer a little bit more bearable:

1. Cooling blankets. I cannot stress the importance of this product for me. Yes, they are expensive, but I use this all year round. Fun fact: Many people with lupus get night sweats. I found a cooling blanket on Amazon for 45 bucks and it’s my new best friend. I recommend getting one that lasts for a couple of hours and won’t leave your sheets damp.

2. Cleansing wipes. I’m at the age where every weekend during spring and summer I’m invited to the wedding of one of my good friends. This means that I’m in a formal suit… outside! I can do my best to pack on the antiperspirant and wear an undershirt to soak up the sweat, but it’s still not enough. My favorite product I use when walking around at any outside event is an oil-free cleansing wipe. These things are great for wiping up sweat and act as a great cleanser for getting any excess oil off my face. I fold mine into my formal handkerchief and it’s perfect for wiping my face (and my giant forehead) when I have to walk half a mile from the parking lot to that enchanting wedding venue in the forest.

3. Hats on hats on hats. I know it’s weird to tell you to cover up during the hottest time of year but those of us with lupus should. Exposure to the sun can cause damaging effects such as the infamous butterfly rash and severe flare-ups. No matter what, hats will never go out of style so I use this as an opportunity to show off my style and individuality. I’m a man of many hats, figuratively and physically.

4. Sunglasses. OK, I will admit. I might have an addiction to these (I have over 10 pairs).  Sunglasses are great if you have sensitive eyes like I do. While it is tempting to go for those Ray-Bans that cost $100, I go to Target and pay $10 dollars for mine. Many pairs have UVA/UVB protection and they look great.

So don’t be afraid to RSVP to that outdoor wedding or Labor Day BBQ. Oh! And of course, most importantly, don’t forget your sunscreen.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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How I Push Forward When the Fears of What My Illness 'Could' Do Hit Me

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I’ve been an “I could” kind of girl for as long as I can remember.

It started when I was younger. My dreams were big, as they should’ve been. I could be popular. I could be beautiful. I could grow up and be famous. I could be this, I could be that. I wore out the phrase like an old sweater. It’s always been familiar to me, and it flows off my tongue like the melody of a song.

Just like every child does, I grew up and my dreams became a little more realistic. My “I coulds” became more obtainable, and I hoped to achieve them. I dreamed that ultimately, someday, I could change the world. I could change people’s lives. I could make a difference. 

But the days grew longer and my bones began to ache. At 17, I was worn out by noon and my fatigue overtook everything. I was in pain constantly. I was so sick.

The “I coulds” changed again.

I could have fibromyalgia. I could have arthritis. I could have an undefined connective tissue disease. I could have lupus. 

And then, for the first time in my life, an “I could” became an “I do.”

On Tuesday, January 26, I was diagnosed with lupus.

Lupus. A disease where the body’s immune system attacks itself. This attack results in joint pain, a facial rash, memory trouble/loss, and exhaustion — along with many, many other complications.

And now, the “I coulds” sing a different tune than ever before.

I could lose my hair. I could lose my memory. I could have kidney problems. I could have heart complications. I could end up not being able to go to school. I could end up in the hospital. I could have trouble breathing. I could have to give up on my dreams.

I am constantly at a loss. No one has written an instruction manual on how to accept the unexpected.

I spent so much time crying and grieving about this diagnosis, because the biggest “I could” in my life involves the fact that I could die. Not everyone has to go about her everyday life with the constant fear that the dormant disease inside her will take a drastic turn. Not everyone has to live in fear of the silent disease that could call them home.

It hasn’t fully hit me that I am living now with a rare, autoimmune illness. It hasn’t fully hit me that I may have to kiss some of my dreams for my future goodbye. It hasn’t fully hit me that I am never going to be the same, and that my life is going to be different than I imagined it — that I will be living now with a “new normal.”

But what has hit me is that I absolutely need to be brave. I need to live every moment with a joyous and thankful heart. I need to praise my God for every moment where I feel good. I need to rejoice in the moments when I am not feeling any pain.

And when I do feel pain? I need to pray. I need to push. I need to persevere.

Because I am lucky, even in those moments that I feel as if I am unlucky. It could always be worse, and I am still so blessed to be where and who I am.

I’m writing this today because I want everyone to know it’s OK not to be OK. It’s OK to be weak and to not feel like you can push through any longer.

But it’s not OK to give in and give up.

I believe that in everything that you do, you need to do your best to prevail. You need to push yourself to succeed and to be the very best that you can, always. Every day of your life, you need to let yourself be afraid. You need to let yourself be scared of what could be. Do wild, adventurous things that scare you.

Just let yourself live, because truly, you never know when that privilege will be stripped from you.

At the age of 17, I feel like a ticking time bomb. I have celiac disease. I have fibromyalgia. I have arthritis. I have depression and anxiety. And now, I have lupus.

Right now, I am so scared. I am so, so afraid. But that is not going to stop me from turning every “I could” into “I am” and “I did.”

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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How I Fight for My Health as a 'Real Housewife' of Lupus

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This piece was originally written by Nakita Nicci, a Black Doctor contributor.

Nakita is a Lupus Butterfly. She wears her purple colors loud and proud with a mission to inspire other women. And when she met fellow lupus sufferer Jokiva, she knew she was someone special. Jokiva is the founder of the popular Facebook group “The Real Housewives of Lupus,” a group for women with lupus and a platform to network, vent and motivate each other to fight.

Here, Nakita speaks with Jokiva one-on-one about what living with and fighting lupus is all about:

Nakita: When were you diagnosed with lupus?

Jokiva: I was diagnosed with lupus at the age of 18. I had a rash that looked like eczema and they started me on skin cream but the rash became worse and then I started to experience joint pain and they sent me to a rheumatologist where I was then told I have lupus.

What’s the biggest challenge you’ve faced since being diagnosed?

The biggest change I’ve had in my life since finding out I have lupus is how I live my life. I barely go out. I currently do not work or go to school because my condition is not so good right now and it makes me depressed at times because I want a normal life.

I used to hate to go in public because people would often look at me as if I was contagious and that was not the case at all. They did not understand that they were more of a harm to me then I were to them. It’s kind of hard to go out in society and want to be accepted for who you are and what you’re going through. People don’t understand unless you educate them about your condition because everyone’s lupus symptoms are not the same. I’ve met wonderful people whose condition is way worse than mine, and it hurts my soul that they have no real support team.

Describe your daily routine.

Every day I get up around 8 in the morning and eat something real light on my stomach. But I don’t have a day-to-day regiment because I never know how my body will react that day. Sometimes I wake up to vomiting or in pain to where my day will not go as planned. It’s very stressful to plan things with friends and family and all because I may become sick.

Read the rest on BlackDoctor.org.

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6 Things I Do to Find Happiness After Living With Chronic Illness for 15 Years

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I’ve lived with chronic illness and pain for a long time. I was diagnosed with lupus and fibromyalgia in 2001. At the time, I was in my early 30s and never really took the time to think about the magnitude of this and what it meant for my future. I was a young mom raising two little kids at the time and I guess a big part of me still felt invincible due to my youth. I was in denial.

But now it’s been awhile. Fifteen years later and I’m now 46, my kids are grown, and the complications and pain from my illnesses have increased over the years. Although I will never lose hope that maybe someday a cure for my illnesses will be found, I have gotten more realistic in the fact that maybe it won’t.

So my job is to find a way to live with this. Not just exist. And the way I choose to live with this today is through happiness and gratitude.

The way I figure it is this… this is my only life. For whatever reason, I was given this big plot twist in my story that I wasn’t expecting. But once I came to a point of acceptance of my illness, I had to take action. I do not want to waste this life by complaining and being negative. That’s a miserable existence and one that I’m not interested in at all. I want to be happy! Isn’t that the ultimate goal, after all?

So here’s what I do.

1. I practice gratitude. Some days I wake up and I’m not exactly in a positive
mood. The pain can get pretty overwhelming at times as I’m sure anyone struggling with chronic pain and illness can relate to. But the first thing that I do every morning is to set an intention of gratitude. I’ve been doing this “gratitude project” (you can read more about it in my previously published article “When I Vowed to Fight My Chronic Pain By Writing My Gratitude Every Day on Facebook”) where I state one thing I am grateful for every single day. By trying to never repeat entries, it forces me to dig deep and really think about what I’m grateful for in my life. And there are so many things. Today I was grateful for sunsets. Yesterday my gratitude was being able to attend my son’s high school senior banquet!

There are so many things in life that are good that we with chronic illness tend to forget because we are so consumed by our pain. So by putting it out there and setting my intention, it starts my day on a humble and happy note.

2. I talk to other people. And only positive people (negative peeps need not apply!). Sometimes, on bad days, I really don’t want to talk to anybody, but I force myself to. I have learned that by talking to others, there are times when I forget about myself, my problems, and my pain. Those moments can be very brief, but they do exist! I think that we are made for human connection, and if I leave myself alone for long enough, guaranteed I will be spending 100 percent of my time in my head… and that just makes my emotional pain worse. Being and laughing with others makes me happy. Especially on my bad days.

3. I listen to my favorite music! I have an awesome playlist I have put together of all of my favorite songs. When I am in a bad mood on a bad pain day, there is no way I can stay there in my personal pity party after listening to “Happy” by Pharrell, “Shiny, Happy People” by the B-52s, or “Mandy” by Barry Manilow (don’t judge me!)  If I have to listen to the same songs over and over, so be it. I blast them in the car…in the shower….whatever! Music is another thing that can take my mind off of the pain and put a smile on my face.

4. I try to stay away from the news. This can be a tough one, but I’ve determined that the world will go on without me if I don’t listen to or watch news 24/7. It’s been a rare occurrence where I have felt good after a news broadcast. There is so much negativity out there! And since my body is now hard-wired for giving me difficulty, I need to focus on keeping myself as positive as possible if I want to live a happy and serene life. So if I’m not caught up on current events…who cares? I’m certain I will find out when there is something of dire importance for me to know. But in the meantime, no news is good news….for me.

5. I meditate. This one took a lot of practice, but I try to do at least five minutes of meditation every day. It really helps to keep me focused and to calm me down. Somehow, even five short minutes can set the rest of my day off on a positive note.  You can do it anywhere and it’s free!  You can find some really great guided
meditations on YouTube, which is what I do.

6. Be silly! A few months ago I dyed my hair purple which was a huge deal for me. I don’t even have double piercings in my ears! I did it for a few reasons including supporting a friend and for lupus awareness. But the silliness of having purple hair at age 46 showed huge growth for me and made me smile a lot. I got so many fun comments on it, and on a personal level it showed that I’m never too old to do something silly. One of my favorite quotes is: “Stop taking life so seriously. It’s not like we are getting out of here alive!” And I couldn’t believe in that more.

Maybe life has dealt me lemons, but I try to spend my time making lemonade out of it because this life is too short to be spent being miserable. There is so much beauty in
life and complaining keeps me from discovering true happiness.

Soak in those sunsets. Engross yourself in great conversation. Sing along with your favorite song at the top of your lungs! There is so much in life that is good and
beautiful and fun and funny. If we aren’t paying attention and are too busy focusing on the bad stuff in our lives, we might miss it. I’ve been given this gift of life and I don’t intend to take that for granted.

I choose happy!

If you are interested in joining me and others on a journey towards discovering happiness and joy in the face of chronic pain/illness/disability, feel free to join my Facebook group Attitude of Gratitude With Chronic Pain.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What I Do at the Gym to Strengthen My Body With Lupus

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The three most dreaded phrases in my world are weight loss, body image and working out. Body image used to be the number-one thing on my list that was constantly on my mind…Used to be. As someone suffering from lupus, I completely understand how important it is to be healthy and in shape. Sadly, it seems for my generation, it isn’t just enough to be healthy. You must post Instagram pics of your six-pack abs and toned arms so you can get enough “likes” from your friends in your Crossfit class. I’m not holding anything against these classes… I take spin class once a week and it’s amazing! Being a young person, I feel there is pressure to look your best, so what does that mean for someone living with lupus?

Exercising takes a large amount of effort and strength, something I don’t have when I’m having a bad flare-up. After my diagnosis and a lengthy hospital stay, I knew that I had to find a way to strengthen my body, even if that meant going to the gym on days my knees were sore and I could barely stand up straight. So that’s what I did. I got a gym membership and started going every other day. I made the right decision. After some initial soreness and aching, I started to get into a good rhythm. I had the opportunity to work with a trainer my first week and he taught me some really good low-impact workouts.

So here is my short guide to what I do at the gym:

Low-impact – do the research! I look up low-impact workouts that won’t put stress on my joints. My favorite thing to do is the stationary bike. This is my favorite thing to do at the gym. I put on my favorite techno music and let out all my frustrations and anger. Before I know it, I’m a gross, sweaty mess and I’ve biked 10 miles.

Row your boat. One of the coolest and scariest-looking machines is the rowing machine. I love this thing. It’s a great arm workout for me and again, it’s low-impact. I’m not a weightlifter, so it’s my one chance to show off in the gym (it’s OK, everyone does it).

The pool is my best friend. Working out in the pool may seem odd, but I think it’s wonderful. When I do pool workouts, there is virtually no stress on any of my joints and it’s much more beneficial for my muscles and heart. If there is a pool at your gym, there probably is going to be an aquatic class you can take. I take one, and yes, I’m the youngest one in the class.

I take time out to recharge and rest muscles and joints. I know it’s tempting to want to go as much as you can, but you must listen to your body. If there is a day that I’m having a bad flare up or just really sore, I take a day off; my body needs to recover.

Whether it’s walking, jogging, swimming or cycling, the key is to get off your butt and get moving. As with any workout program, talk to your doctor first. I recommend asking what you need to work on so flare-ups don’t leave you completely weak. For example, my doctor wants me to work on strengthening my hips. So off to the pool I go.

It’s not about getting the perfect body; it’s about being healthy enough for you.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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5 Little Things You Can Do to Support Your Friend With Chronic Illness

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I was talking to a coworker the other day about what it means to have support in your life. I had a hard time trying to articulate how important it was to have a support system in life. Not just regarding someone with a chronic illness, just in life in general. I was reminded of a term that most of the women in my life used  — it was called being an advocate.

If I die tomorrow, the one thing I will be most proud of is having a close relationship with my friends that I truly care about, and that I know care about me. Yes, like anyone I’ve had friends that come and go, but each one of them affected my life in a positive way. I can honestly say I wouldn’t be here if it wasn’t for their encouragement and their support. Dealing with lupus would be near impossible. A lot of times friends think “What can I do?” or “I don’t want them to seem like I’m treating them with ‘kid gloves’ or hovering.” Here’s my advice: Hover.

It’s as simple as asking if they need anything or bringing them something. For example, my flare-ups are usually focused on my knees, which make it hard to walk sometimes. I woke up one morning with a lot of pain and my best friend noticed. Then he uttered the most beautiful words a man in his 20s can hear: “Stay here, don’t get up. I’m going to get McDonalds for breakfast.” I could have cried. I probably did. My point is it was that simple. If I had to get up and get my own breakfast it would have taken me 30 minutes of sighing and moaning from the pain. It’s just the simple act of being there for someone.

So here are some examples of little things you can do with dealing with someone with a chronic illness or lupus:

Words of encouragement. Leaving notes, Facebook messages, e-cards, anything showing support goes a long way. It can be the difference for whether a person gets out of bed that day or not.

Offer to do a chore for them. Chances are that if someone with lupus is having a bad week (I called it Flare Week) they’re not focused on getting dishes washed or doing the laundry. Pop over and do it for them. Just one load. It will change their life.

Take life at their pace. Living and working in a metropolitan city (Washington, D.C.), it takes a lot for me to get all gussied up and go out for happy hour with my friends after working all day. Nine times out of 10, I’m going to cancel. Offer to spend the night in with me watching Disney movies and baking brownies. You’ll have way more fun and… brownies.

Gifts, plain and simple. I like things. Who doesn’t!? Being a guy, the easiest way to get to my heart is through my stomach. If you offer to bring me food, I might propose. But it can be anything — magazines, movies, board games, anything to occupy their time while they’re stranded at home having a flare-up.

This may seem silly, but slow down! A lot of my friends are in fairly good shape and they’re all really fast walkers. I am not a fast walker, never have been, never will be. If we’re at the mall or out for a night on the town, just walk with me. I know it’s frustrating, but it takes a lot for people with lupus to move their body. Take breaks, slow down, park close.

These are just a few things that you can do to show support. They don’t have to be massive gestures, just keep it simple. All you need is one person, a solid force that will be there for you without judgment. It takes just one.

Follow this journey on Random Thoughts From My Head.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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