When I Kept Saying 'But I Used to Be Able to...' After I Got Sick

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A friend recently asked me what my “spirit animal” would be. When I raised my eyebrow, she added, “I’m serious, everyone has one!” I laughed, as a sloth immediately came to mind; like these creatures, I love to sleep, swimming is my favorite pastime and for the most part, I am a loner. But even with all of these similarities, I quickly answered, “Most likely a cat; it seems I have nine lives. “

It’s a fact — I am a death cheater. There was the time in my 20s when I almost died after being run over by a pickup truck traveling 50 mph as I walked to my car. And then there was the lupus diagnosis and subsequent blood clots, mini-strokes, brain aneurysm and other medical absurdities that seem to come along with this chronic illness. Through the grace of God, an incredible support system and a feisty personality (what can I say, I’m Italian), it seems I’ve been able to make a comeback again and again and again.

This is a trait I have noticed in many people who are dealing with a chronic illness. As I get older and meet more people, I am always intrigued by the situations and traumatic experiences people can overcome, standing stronger once the storm has passed. I’ve also noticed that for many of us who have encountered these earth-shattering events, life seems to separate into the time “before” the incident and life “after” the incident.

In 2007, several years after my diagnosis and tango with the bumper of a Ford Ranger, I married an incredible man. For the first few years after our wedding, I experienced lupus flares that can only be described as a crap-storm of ridiculous incidences. It was so bad at one point the hospital literally sent me home because nothing else could be done. My life involved mostly sleeping and having a nurse come to our home to help me eat and bathe.

I was frustrated and angry, but when you are ill you do not have a lot of extra energy and resources to handle much. I wanted to enjoy life with my husband. And so began a season where much of my spoken word involved the following phrase: “But I used to be able to (insert activity, lifestyle, passion, etc.).” And with this, the mental damage began. Through the help of my super smart (and quite handsome husband), I came to the realization that I had never fully grieved and mourned the loss of my old life.

Have you ever felt like you were in a hopeless situation because of your illness? Were you angry and maybe resentful of the loss of your health, the ability to be independent? Have you ever felt angry at your own body because you feel like it turned on you for no apparent reason? I felt all of this and I knew not confronting it and dealing with it was going to ruin me. 

The loss of health can interrupt so many parts of life — career, finances, intimacy, hopes, and self-esteem. We can feel frustration, guilt (because we have to rely on others) and depression. Add a little pride to the mix, and refusal to reach out for any help, and you have a disaster slowly unfolding.

Eventually, my husband coined a term in our house, “The Town of Used To.” Anytime I would compare my present day with old life, he would roll his eyes and say (with a laugh), “Oh crap, we are going back there again?” We can actually joke about it now. I couldn’t see it then, but visiting this “town” was anything but a vacation.

Have you ever traveled to “The Town of Used To?” I noticed the more time I spent in this hellhole, the more discontentment and pain I felt for the things that were involuntarily taken away from me. One dictionary I researched describes discontentment as a “restless desire or craving for something one does not have.” My craving for my old health and freedom was leaving me feeling bitter and discouraged.

Living with a chronic illness is hard enough. Eventually, I made a commitment to myself to not bring in any additional despair and dismay into the mix. For lack of a better phrase, I had to give myself a swift kick in the ass and made a calculated and intentional effort to be grateful and cognizant of the positive things that were happening. It wasn’t easy. I failed a million times, but I felt if I didn’t make this change, I’d up end living in a state of constant dissatisfaction, one foot in my present world and the other in a time that will never be again.

It has taken me years, but I can see the fruits of my intentional efforts and a shift in my way of thinking. Today I am so grateful to be alive, to have an incredible career, and to be surrounded by a great support system. I’m lucky to have an adoring mom, a patient husband and a rescue dog, who for some reason thinks I am the next best thing to Snausages.

woman getting treatment at doctor with husband
Marisa and her husband at her treatment.

Starting a gratitude journal was a life-changer for me. Yours doesn’t have to be fancy, just a notepad will do. Jot down at least two things you are grateful for each day. It could be something as simple as “I had a little extra time today and took a 20-minute nap,” or something more profound such as, “I woke up today — I was given another chance to change the world!”

My journal, prayer and support helped me retrain my brain and put a permanent restriction on visits to the Town of Used To. If your mental passport is almost maxed out with visits to this dump, I’d love for us to both commit to each other to not travel there anymore. There is a great big world out there with much better destinations to explore!

As for the spirit animal shenanigans, I eventually had to research the concept — which seemed completely absurd to me at the time. Turns out, the cat is believed to represent patience, a spirit of courage, a desire for adventure and healing oneself from the inside out. Sounds like the majority of chronic illness warriors I meet on a regular basis! They are some of most courageous people I’ve ever seen.

And so, here’s to my next adventure, one far away from the hospital and most definitely not in the Town of Used To.

Maybe I will see you there…

Follow this journey on Lupus Chick.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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Why It's OK to be Chronically Selfish in Your 20s

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When I was in grad school I felt guilty about missing family functions, anniversaries, birthdays and holiday gatherings. I was often plagued with the thoughts that I would miss out on precious moments my nieces and nephews were having, afraid my family would look at me differently. That was until my father gave me this advice: “Be as selfish as you can in your 20s. Do everything you want, date who you want, take time for yourself, because once you get married and have kids, it’s no longer about you.”

I feel like this especially applies to those who are dealing with a chronic illness in their 20s. It was really bad once I started to make friends in D.C. The bevy of activities are endless, which is great, but that also means I’m going to be one tired millennial at the end of the day. In our 20s, we seemed to be obsessed with the idea of having it all. And why not? We’re starting to make headway at our first “big boy” jobs and have a great social life all while trying to date and make relationships work. It’s a lot, I’m not crying about it; it’s just overwhelming if you think about it.

When I’m feeling overwhelmed, I tend to go back to my father’s advice on being selfish. What he was essentially telling me was to practice “self-care.” As someone living with lupus, I now know what triggers flareups in my body. My main trigger is stress. It’s amazing how a stressful day can turn into not being able to walk the next morning. I’m learning to avoid things I know are going to stress me out. So If I can’t make it to my work happy hour because I know drinking plus getting home late on a weekday will make the rest of my week pure hell… I’m not going to go. Also, that hiking trip that has the potential to cause so many flareups I’m afraid to count them…sorry, probably not going to participate. I’m also not going to let the stress of F.O.M.O (Fear Of Missing Out) get to me as I’m having a “Batman” marathon at my apartment instead of going salsa dancing (which I actually love to do).

Give yourself a break. Do some breathing exercises, meditate, go for a walk, do some yoga. The one thing I can do to counteract some of the damage done to my body is sweating out the stress at the gym. It takes a Red Bull and an entire Britney Spears album for me to get motivated to go, but I always feel better after. Do something for yourself and don’t feel guilty about it. It’s a balance and struggle, but your body will thank you. You can’t completely avoid stress, but you can control how it affects your life and your illness.

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? Check out our Submit a Story page for more about our submission guidelines.

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26 Ways People With Lupus Describe the Disease to Someone Who Doesn’t 'Get' It

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Lupus is a chronic autoimmune disease where the immune system creates antibodies that attack the body’s own tissues. It affects an estimated 1.5 million Americans. No two cases of lupus are the same. Symptoms can range from intense fatigue and exhaustion, joint pain, memory problems, skin rashes, kidney problems, lung inflammation, depression and sensitivity to the sun.

In honor of May being National Lupus Awareness Month, The Mighty partnered with S.L.E. Lupus and the Lupus Research Institute to raise awareness. We asked Facebook communities here and here: How would you describe lupus to someone who doesn’t know what it is?

These are their responses:

1. “Lupus is losing yourself. Lupus is taking it day by day. Lupus is a thief of joy and overall health. Lupus is dealing with side effects head to toe. Lupus is finding yourself wishing for the days before ‘you were sick.’ Lupus is a mystery.” — Alyssa G.

2. “Lupus is my evil twin, looking at a broken mirror.” — Lisa C.

3. “It makes you so tired, as if you are lugging around something that weighs a ton and you have to push yourself to move.” — Heather F.

4. “Lupus is a test of strength. It is learning how to live each day no matter the consequences. Lupus does not understand I need to get out of bed; it challenges you to sit up, put your feet on the floor and stand. Some days you win, some days you lose, but you never give up!” — Jennifer P.

5. “Lupus is a like a gag gift. The outside of the package looks good, but the inside of the package, which no one can see, is actually pretty ugly.” — Bernadette S.

6. “Lupus is like a chameleon. It changes daily, sometimes hourly. You never know what symptoms you will wake up with.” — Melanie M.

7. “I told my girlfriend that my body’s cleaning lady (my immune system)… started to rip the couches (my kidneys) to shreds instead making sure the trash was getting taken out (toxins when I go potty).” — Paige D.

8. “Lupus gives you strength in ways you never thought you had but takes away that strength at any possible moment.” — Valerie T.

9. “One day, I feel so great I could hug strangers. The next day I mess myself up and can’t get out of bed.” — Amanda C.

10. “Imagine the time you had the flu. Now triple the exhaustion, the pain, the sick feeling. Imagine never feeling better.” — Shonda D.

11. “I’ve heard lupus called a roller coaster ride, an invisible illness, being allergic to yourself, a medical mystery, the Great Imitator, a civil war, the ‘Cruel Mystery’ and a daily roulette game… just by my doctors and nurses alone. If my doctors feel this way, imagine how you feel going through it every day.” — Courtney A.

12. “Lupus is life-changing — and not in the good way.” — Dena D.

13.  “Explaining to someone what it’s like to have this debilitating disease is hard. We all look normal on the outside, but on the inside we’re screaming to get out of the body that is wracked daily with pain, fevers and fatigue.” — Tammy K.

14. “A long winding road with many turns and bumps.” — Nicole L.

15. “As a child, my father said I was born tired. I will never forget that. I fatigued quicker than any of my friends, have had stomach aches and vomiting since childhood. But carried on. As I got older symptoms worsened, became more complex, involved more organs. Finally a diagnosis… I’m not crazy after all.” — Cynthia L.

16. “My body thinks I myself am a virus. By doing its job in protecting me, it is in fact destroying me.”  — Amanda T.

17. “Lupus is a daily reminder that you can’t take life for granted.” — Demi L.

18. “It is like standing on the edge of a cliff. You never know if the strong wind of pain, fatigue, infection, weight gain, swelling, memory loss, etc., will blow you off the cliff and land you in the hospital.” — Wanda M.

19. “Lupus is unpredictable. It shows up whenever it wants and wherever it wants. It tries to destroy you everywhere. You only have a little time to do things before you can’t do them anymore. My hands are hurting badly from writing this…” — Sara G.

20. “Sometimes the simplest way to describe it is that I am allergic to myself.” — Tracey K.

21. “It’s watching your hair fall from your scalp and knowing there’s nothing you can do about it. It’s remembering to take medication daily. It’s staying in on days/nights to heal while your friends/family are out having a good time. It’s wondering whether or not your body will be strong enough to do things like have children. It’s hoping that the loved ones in your life will support and understand. Lupus, it’s my life.” — Amanda G.

22.“Lupus is a civil war inside your body. Both sides mean well, but they are both hurting each other in an effort to save the one thing that they are making suffer, you.” — Kelli B.

23. “I would describe lupus as a terrorist that takes your body hostage and has no mercy.” — Kristy W.

24. “It is isolating, painful, nauseating, draining, confusing, hurtful, frustrating, depressing, and overwhelming.” — Ashley S.

25. “Lupus is like a box of chocolates… you never know what you’re gonna get!” — Jane T.

26. “Lupus is hair loss, swollen hands, joint pains, but on the other side it is a good friend who teaches you to love life more than ever and who teaches you to fight against all the negativity.” — Bengu L.

How would you describe lupus to someone who’s unfamiliar with it? Let us know in the comments below.

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When Strangers Overwhelmed Me After I Admitted I Need Help for My Lupus

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While my disease is doing better each day and I am feeling better with every treatment, there are still some things that will never go away. I will never be “cured” in the traditional sense. I’ve tried so many things and so many doctors and been poked and prodded and second opinions? Yeah, I’ve got 20. 

After denial came anger. Because being a single mom, wasn’t hard enough? Having two teenage boys that are like emotional tornadoes wasn’t hard enough? Having a career and moving to the mountains wasn’t hard enough? The fact that those were all “choices” I’ve made and lupus wasn’t? Yeah, that realization really pissed me off.

I own the mistakes I’ve made. I don’t just own them, I reference them in times of despair to remind myself how far I’ve come, and yet still have to go. I’ve managed to turn those moments into the best times of my life. Every one of those choices above that made my life hard, made me cry and laugh sometimes in the same breath, made me who I am today. Strong, independent, intelligent, seeking new adventures and doing the things people said couldn’t be done!

But lupus didn’t make me feel any of those things. It made me feel weak. Needy. Incapable of taking care of myself and poorly educated on the needs of my own body… my own mind… and my own heart. I realized I was blaming myself, pissed at myself really, for the one thing I didn’t have any control over. I refused to ask for help or admit that I needed help. I didn’t want to be “that girl.”

Finally I had the meltdown that had been building up for years. Building up since that day I was diagnosed. I realized I did in fact need help. I realized I couldn’t do this, everything I am and aspire to be, on my own. I didn’t know the whats or the whos, I just knew it was finally OK to say it out loud. I have lupus. And dammit if I couldn’t change it, I would own it.

Now I am not a religious person, but I do believe in the power of suggestion, of positive and negative energy, and that we all have a path we are on in this life and we learn through the suffering of ourselves and those around us. We become humbled. We seek and in return give love and comfort to those who ask.

I looked up at the stars, then I closed my eyes to meditate, and I asked for strength.

Then I got on my community “Buy Nothing” Facebook page and I posted: “In search of: a wheelchair.”

To say I was overwhelmed would be an understatement. “Speechless” doesn’t even give it justice. Offers of wheelchairs, places to go for used ones, lupus support groups, offers to pay the co-pay by complete strangers! It turned out someone I already knew had one in her garage, of which I am graciously and humbly accepting. But I didn’t know because I never even asked.

The next weekend the boys and I went to San Francisco and I was invited to speak to budding songwriters. We went to dinner, and I went outside to get some fresh air. I was greeted by sounds of a saxophone player and it took me back to a time, October 2007 I believe, when I had been standing in the same spot, listening to a saxophone player.

So I asked him “How long have you been here, on this corner?” And he said, “Well, it’s been about 20 years. I play here here every night but Wednesdays. Gotta let the younger guys have a turn.”

“I was here almost 10 years ago, and you played Miles Davis for me and I gave you a $50 bill,” I said.

He said, “And then we sat down right there and shared a smoke. I never forget a 50.” 

woman standing with saxophone player on the street
Bridget and the saxophone player.

And I never laughed so hard. He asked how my boys were, and he commented on my cane, then I don’t know why, but we hugged like old friends. We talked for another 20 minutes and when I turned to leave, he grabbed my head, kissed the top and began to pray. He asked that the boys and I be given strength. Which is when of course I completely lost it. I began to sob, almost hysterically. But he held me tighter, and prayed harder. And I accepted it. Not because my faith was the same as his, very far from it in fact, but because our spirituality was.

We are all human. We all have to ask for help and if we are any good at being human, we will all give someone help at some point, too.

I don’t know who I thought “that girl” was, but I know who she is now.

You see finally, after anger came acceptance. Acceptance that while yes, I do have this disease, equally, if not more important, was that I am not alone in this fight. Having lupus has made me realize that the person I truly aim to be is not one who is jaded and made “hard” by something completely out of my control. It is to accept that maybe out of control is OK. Maybe being someone who treasures receiving love as much as giving it is even better. Being a lupie warrior, just like being a mother, will never be easy. And maybe that’s the best part.

The Mighty is asking the following: Share with us an unexpected act of kindness, big or small, that you’ve experienced or witnessed in an everyday place. Check out our Submit a Story page for more about our submission guidelines.

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The Quote That Helps Me on the Bad (and Good) Days of Lupus

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Early one February morning, my 12-year-old daughter and I sat in an orthopedic surgeon’s office, waiting to hear the report on an exam of her injured knee. The news wasn’t good.

“It’s an ACL tear,” the surgeon said. “It will require surgery and a six month recovery before she can play soccer again. There will be lots of physical therapy and work ahead of her, but she will recover with time and effort.”

Needless to say, this was not the news we were hoping for. I thought we would go into the doctor’s office and hear she needed a few weeks rest and would be as good as new. But life is like that, isn’t it? Sometimes you sit in a doctor’s office and your whole world shifts with one spoken sentence.

My daughter is an avid soccer player, and to hear the news that she was going to be out for an entire season and undergo a pretty major surgery with a long recovery was terrible. We both cried at the struggle she would have to face. As I wrapped my arms around her in the office, I wracked my brain, trying to come up with something that would help her focus on the challenge at hand. Something that would motivate her and let her know she could do this.

“Matching bracelets!” I said.

“What?” She said, pulling back from me.

“Matching bracelets! I know where we can get bracelets with quotes on them. You can pick a bracelet out with the quote you want, and I’ll get the same one. We’ll wear them during your recovery, and you’ll know that we are right there with you the whole time, and that you can do this. You can look at the bracelet, and it will give you a physical reminder when you need it.”

And, I thought to myself, jewelry is always nice.

A short time later, we found ourselves standing in front of a large display of quote bracelets at a local store. My daughter leaned on her crutches and looked at all of the choices.

“This one,” she said, after 30 seconds spent looking at the bracelets.

“This too shall pass,” I read.

“That one?” I said. “Are you sure?”

This too shall pass was… nice, I supposed. But I’m a Marine Corps brat, and I was thinking more along the lines of something more motivating like, “Never give up.” This too shall pass seemed more passive. Like we were waiting for something to pass, rather than being active in making it pass. I’m all about being active.

I’m big on control. Is that obvious?

“That’s the one,” she said. “When I get sad, it will remind me that the hard part will end. It will remind me that this is not permanent. That things will change. I just have to give it time.”

OK then. That was the one. I picked up two bracelets in silver and took them to the front to pay for them.

daughter and mom wearing bracelets

As the weeks went by, I wore that bracelet every day as a reminder and show of support for my daughter. But, as I caught myself looking at the writing on it, I thought about the statement it made more and more. The meaning behind it began to dawn on me.

A few weeks after my daughter’s surgery, I had a particularly bad couple of weeks. There were doctor’s visits, new meds and new issues to deal with and manage. Making plans for anything during that time was challenging, and I got frustrated one night.

“What if it’s always like this? How will I ever manage to make plans for anything? How can I be reliable if I can’t make plans and keep them?” I asked my husband one night.

“It’s not going to always be like this,” my husband said. “Slow down and hold on. It takes time to figure it out, but we will.”

And, with a little more time, we did. This too shall pass.

this too shall pass bracelets

As I waited for another doctor’s referral, researching and wondering about new treatment options, I could feel myself getting antsy and trying to anticipate the outcome ahead of time.

Stop, I thought. This too shall pass. I’ll have answers soon enough and will deal with each situation as it comes. Wait for the right time.

The statement held true on my good days too. Even when everything was clicking along, I felt on top of my game and the whole world was beautiful and right… I still remembered, this too shall pass. Appreciate the good days. Rejoice in the joy that they bring. Revel in it and soak it up for those days that aren’t so good. I rely on the promise of that returning joy. It helps me when I’m struggling with the mental or physical aspects of lupus. This too shall pass.

That’s just how life goes. We endure and work through the difficult days, hour by hour, task by task, treatment by treatment. We simply can’t make it go by any faster. Endure. But then, when it gets better, we are able to eagerly greet those days that we don’t have to work quite so hard.  Those days are beautiful.

“This too shall pass” isn’t a passive statement, like I thought. It’s a reminder to hold on, endure and wait on the promise of joy. Hold on, endure and wait are all actions on our part, and sometimes I need the reminder to take that action. I’m so thankful my daughter, in her 12-year-old wisdom, picked out that bracelet. It was a life lesson I needed to be equipped with to live life with lupus.

The Mighty is asking the following: Describe a scene or line from a movie that’s stuck with you through your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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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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