Lisa Prins

@lisa-prins | contributor
Lisa Prins is a binge hobbiest who is constantly throwing herself into many different projects. When she is not well enough to do one, she will find another. Music is her main love. She is a classically trained pianist, vocalist, songwriter, composer and ukulele player. She also enjoys writing, drawing, painting, crocheting, pixel bead art, photography, jewelry making, sewing, playing video games, robot building, and a number of other hobbies. Love, compassion, friendship and understanding are most important to her. They are what gives meaning to her life. Lisa was born with a congenital kidney disease called renal tubular acidosis. This combined with asthma, chronic infections, idiopathic angioedema and anaphylaxis have shaped her into a person who is thrilled to experience every bit of life and love, every sunset and every little joy that life has to offer. She lives with her incredible partner, who is, and has been, her love, her best friend, and, at times, her caregiver. She decided to start contributing her writing in the hopes she can help others know they aren’t alone, and help those who aren’t chronically ill better understand the people around them who are.
Lisa Prins

Finding Humor in Chronic Illness

For me, being chronically ill sucks. Bottom line: It’s not fun. Or funny. Or enjoyable. But there are moments that make me laugh. The absurdity of it all can turn an embarrassing or lousy situation into one that makes me roll my eyes and chuckle. Here are a few situations I think many of us with a chronic illness can identify with: The Leaky Faucet After needing a catheter in the hospital for many months, I’ve started to lose some control (*whispers*) down there. The other day, I was being lifted with a ceiling lift out of my wheelchair to the commode and I left a beautifully drawn, wet design behind me as I was in the air. My dribbles of pee were drawing out masterpieces of art along the floor. I didn’t know my urethra was so talented!! Let’s Play Where’s the Hoohaw! Ever since I fractured my spine in multiple places, I’ve needed the help of others to wipe my unmentionables. It was so embarrassing at first and so frustrating because the nurse or nurse’s aide would be blindly reaching under the commode, like a blind bat on a mission. A mission that most often fails. Because they are blind. As a bat. Ha ha. So now, every time I go through this, I imagine a “Where’s Waldo” book. But instead of a bunch of pictures of people, it’s a bunch of delicate body parts. Moon Face There’s nothing quite like walking past a mirror and doing a double take because you see a big, bountiful balloon where your face used to be! Sexy!! Cankle Couture Ooh la la!! Check out these ankles! So full and voluptuous. Who needs sexy shoes when they can have full blown edema. My personal go-to when I have enormous feet are gigantic man slippers. I could be a foot and slipper model with these swollen lovelies. The bigger the better, right?! The Annihilator Nap I don’t know about you but I am a nap expert! I can kill those naps like you wouldn’t believe. When the fatigue hits, my body is ready my friend! Ready to do this thing! Yeah! Let’s sleep like Rip Van Winkle! Let’s snore and make the ground shake! Let’s close those eyes and collapse like a house of cards. I own you, nap! Be ready, ‘cause I’m always ready. Eau De Stink It can’t just be me, can it? If it is, feel free to wrinkle your nose at me. There are days when I just can’t shower. Too much pain. Can’t move. Too sick. Sometimes my aroma can even scare myself! But, such is life! I’ve considered bottling the scent and calling it “Swank Stank.” It Ain’t Easy Being Green Ahhhh, nausea. Good ol’ green faced monster. Whether it’s my meds, an infection or who knows what, I am a pro at being “pukey.” Yep, that’s the technical term — “pukey.” The worst is when you are in public and are desperately trying to keep it all in. Sure, I’m OK. No worries! Oh, these gagging noises? That’s my swan song. Isn’t it beautiful?! Rat’s Nest With a Hint of Crumbs I’m a crumby person, I have to admit it. As crumby as they get. And I’ve been known to have messy hair because I can’t move my arms or get the energy to comb it. Plus, the added allure of my most recent snack. It’s the perfect way to save a snack for later. Keep it in your hair. Mmmm delicious! Broke My Back Mountain I’m broke. And I broke my back. I can’t work. I couldn’t work due to multiple chronic illnesses, even before steroid induced osteoporosis caused multiple spinal fractures. But now, I’ve been in the hospital for seven months straight and any form of working has been impossible. My bank account is screaming at me and I scream back at it just to show it who’s boss!! Doctor Dread We all know one, let’s be real. Some of us know many. Doctors who really shouldn’t be in the profession. Ones who tear us down when we need them most. Well, when I’m faced with these lovely “professionals,” I now imagine them being hung upside down by their underwear while being denied their favorite treat — hung just out of reach. This always makes me smile. The Mystery Bruise Oh ho, ho and a bottle of…wait? What? Where did this come from?! I’ve decided to make up scenarios in my mind about where each new bruise came from. Like I got this while riding a unicorn, chasing an ice cream truck down an express freeway or I got this one by playing around with my lion friends at the zoo. Or I was climbing a tree in my wheelchair to go hang out with the squirrels and when I popped a wheelie, I came crashing down. As I said, life certainly isn’t easy when chronically ill, but I try to make the best of every single day. There’s no guarantee of tomorrow. I’ve made it through some hard times that were pretty touch and go. So I’m going to enjoy my ride here on earth while I still can. I hope the same for all of you.

Community Voices

I Stood. I Walked. I Conquered.

I Stood. I Walked. I Conquered.

They said they could offer no guarantees when I begged to be given the chance to stand again.  But, after going through a whole lot to get there, they finally agreed to let me start working with physio again. “They” being the Hospital I’ve been in for the past 7 months.

Guess what? I stood!!! The first day I tried! After 6 months in bed. In a hospital bed. A hospital that had given up on my potential. Who had stopped all physio with me months prior. But, I continued to do bed exercises on my own. And I was determined to not be sent to a seniors longterm care facility at my age, which were the plans the hospital had in store for me. So. I kept my muscles strong in spite of them.

AND I STOOD.

THEN I MARCHED AT A WALL BAR.

THEN I PIVOTED.

THEN I STARTED TRANSFERRING FROM WHEELCHAIR TO COMMODE.

All of this was very exciting. I had a goal. I wanted to walk again. I have multiple spinal fractures up my entire spine because I was on high dose steroids for a very long time and developed severe osteoporosis that turned my bones to mush. I have so many spinal fractures that they won’t/can’t count them all. But I wanted to walk. And I felt stronger due to a new bone injection medication.

They told me it wasn’t a viable goal. The very next day I WALKED. I PROVED THEM WRONG.

I walked with the parallel bars first. Then, I walked with a two wheeled walker. They told me they didn’t think I could walk with the four wheeled walker. You’d think they know not to say I couldn’t do something. The next day I walked with the four wheeled walker.

I’ve been the talk of the physio ward. The hospital Doctor I have told me that they just don’t see this happen. People with my injuries and health just don’t walk again. They don’t improve like this. That I have my age going for me but mostly it’s my stubbornness and attitude that have made this possible.

So… if you have a goal, try!! We won’t always be able to do everything we wish for, but if we don’t try we will never know. If they hadn’t let me try I would be in a seniors home, stuck in bed right now, not realizing my potential. Having no clue I could stand, let alone walk. Instead, I am now in the process of possibly going home, after being in the hospital for 7 months straight.

Allow yourself to dream. Work hard. Ignore the naysayers and make goals. Reach for the stars, my friends. You never know how far you might go.

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Lisa Prins

I Ignored a Serious Medical Condition Because of a Doctor's Disbelief

I have had a swollen tongue for two years. Strange way to start an article, isn’t it? I’m writing this, while still emotional, to plead with you to trust yourself and what you know of your own body. So. Yes. My tongue has been swollen for two years and I was shocked when it rapidly shrunk. You’d think that wouldn’t be a surprise to someone. How can that happen? How can that be an alarming discovery? Yet it was. Because I allowed the doctors who didn’t believe me to make me disbelieve myself. They weren’t cruel doctors. They actually, literally, saved my life during that hospital stay. They simply truly thought I was wrong. Prednisone can sometimes cause the sensation of a swollen tongue. They had seen my tongue be larger, protruding from my mouth. They had seen my pictures of how bad it can get. In comparison, this was not as large. But I knew my tongue was normally tiny. I knew it was taking up too much space. I knew it still hurt and tingled. Yet, over the period of two weeks, I was successfully, systematically, convinced to feel sillier and sillier for complaining about it. I was made to feel wrong and I began to distrust myself. I was told I was experiencing this sensation, not an actuality. To explain more, I have idiopathic angioedema. It is a condition that randomly swells various body parts. Tongue, lips, feet, etc…I was actually in the hospital at the time for my idiopathic angioedema and anaphylaxis condition. We were tapering me off of prednisone, because treatment was failing. By that point, I had had my tongue swell to many different sizes and I had pictures of that. But I did not have pictures of my tongue pre-angioedema days. It never occurred to me to take pictures of my tongue size, prior to having tongue swelling issues. I had no proof. I had no way to show them how tiny my tongue normally is, and my tongue is really quite small. Smaller than the norm. But I had nothing to show myself or them, nothing to clear up the debate. Yes, during that stay my tongue could fit in my mouth, was not protruding, but it was still not my normal. Not even close. That entire two week stay I kept informing them that my tongue was still swollen. They made it quite clear they did not agree. I was insistent, but did slowly start to say it quieter, with less assuredness. I gradually started to wonder if they were right and it truly was merely a sensation. My tongue had been swelling to much larger sizes for many months prior, and eventually I started to question my own memories. My own body. My own sensations. When I was discharged I was embarrassed to see that they wrote in my file that I was constantly insisting that my tongue was still swollen, when it wasn’t. I was so humiliated and felt so ashamed. Wondering if I was delusional. (Although I did pass the psych evaluation I was given in there, so they were not claiming I was delusional. I just worried I was. They were simply claiming I was mistaken.) Reading that in my discharge papers effectively shut me up. I stopped mentioning my tongue. I stopped believing myself. Every so often, over the last two years, I would rebel in my mind, about the belief my tongue was always this big. Especially on the days when it felt even bigger. On those days I would take pictures. And wonder. Then, the sense of shame and doubt would come pouring back and I would decide to not mention it to my doctor. My doctor is amazing. He is a fantastic doctor. If I had come to him and said, “My tongue is still swollen. They are wrong,” he would have believed me. The problem was that I no longer believed myself. A few weeks ago I became very sick, with very bad lungs. I was put on prednisone initially. It didn’t help much. I was then put on a stronger steroid. As the first dose started to kick in I yelled for my partner, telling him my mouth felt weird. Was tingling. He came running. Tingling and weird is bad. That happens when my tongue swells enormously and happens when it rapidly shrinks. We were both expecting an enormous tongue. We waited in fear. Instead, my tongue shrunk three sizes smaller in less than a minute. That was the surprise of my life. It felt so strange and uncomfortable. Too roomy. It also felt like an enormous emotional blow, on multiple levels. This meant that my idiopathic angioedema has been completely active for two years, despite the meds I’ve been on for it. It also meant that my doubt in myself prevented me from seeking more help for a very serious medical condition. That’s bad. A two week hospital stay and one piece of paper made it so that I didn’t trust myself enough to know my own tongue has indeed been swollen all this time. That I wasn’t wrong. It’s scary to realize how much power and belief I put in people who didn’t know me. I’ve lived with my tongue my entire life, yet, somehow, I was able to be convinced that I was only experiencing the sensation of swelling. What’s even worse is that I am diagnosed with a condition that causes this and I still allowed my own truth to be overshadowed by shame and others “expert” opinions. Now, I have the task of fixing this. Honoring my mind and my body. Seeking better treatment for my angioedema. Learning to trust in myself again. Please. Trust yourself. You know your body better than anyone else. This is so important. Don’t allow the doubt of others to smother your own truth. We want to hear your story. Become a Mighty contributor here . Gettyimage by: JZhuk

Lisa Prins

Being Sick on New Year's Eve With Chronic Illness

Some people wish others health and happiness for the New Year. I have had to learn how to achieve happiness without the guarantee of health. If I want to enjoy my life and take advantage of still being here on this beautiful planet full of love, potential and opportunity, I need to be able to see happiness, feel joy – regardless of the things I can’t control. On December 30th, after my boyfriend asked me to please go to a clinic and just see if I have pneumonia again, I agreed to go. For him. I wasn’t sure if it was pneumonia or not so I had been hesitating. Thinking it might be a viral chest cold. It turned out to be pneumonia. Again. So, we brought in the New Year while sitting inside our warm home. Wrapped in blankets, in our pajamas – me on antibiotics, inhalers, prednisone, Tylenol, coffee… the whole pneumonia shebang. Bringing in the new year with a bang. And we had a lovely night. Warm. Safe. Full of love. Taking care of my health. Being together. Counting down, watching the ball drop. Laughing, holding hands and a kiss at midnight. My year isn’t “ruined” because it started off with pneumonia. It’s one week that happened to land right when one year ends and another begins. One of many days I will be sick with something. It’s part of what my body does. And I refuse to let that ruin my life or let my mind interpret it as being a lousy omen for the year. Nope. It’s not an omen. It’s just part of my life. And I’m glad to be alive. I’m glad to be loved. I’m glad to know I will have new days full of new moments. Good ones, great ones, funny ones, hard ones, sad ones, sick ones. It’s part of the human experience. I hope, if you also started out the year on a hard note, health-wise, that you can try to fight the easy-to-happen negative feelings. The fears about this being a portent for the future days to come. We can’t control everything our bodies throw at us, but we can control how we respond to it. How we approach the day after. How we bring in the year. Each day is a new start. Each rough section is hard. Sometimes it can be so hard. I’m not denying that. I’m not living in a fantasy land. Sometimes we can wind up drowning in pain, sickness and despair. Sometimes it can last for far too long. Sometimes it is an illness that will never end. And that can be hard to take. But please know that others understand. That others care. Please try to see the potential underneath the pain. I’m here for you on the days when it’s hard to see the promise of future joy. I feel blessed to know that many of you will be there for me on the days I struggle to see any hope of returning happiness. Together we can bring joy and love to each other on the days we need it most. And that’s a truly beautiful thing. That’s what I love about life. Happy New Year, my chronic illness friends. I wish you all happiness and joy; I wish you others who will hold you up on the days when joy is darkened. I wish you love. We want to hear your story. Become a Mighty contributor here.

Lisa Prins

The Fear of Trying a New Medication for Insomnia

It’s that time again. A new medication. A new med with the potential to either really help me or really hurt me. I stare at the medication nervously. Trying to work up the nerve to take it and find out whether it will be helpful or horrible. I’ve been staring at this med for two weeks. A medication I practically pleaded with my doctor to get. Something to help me sleep. Nonaddictive. I’m not sleeping. I need help. Yet, here I am, still in that unknown place, not knowing how it will affect me, because I haven’t tried it yet. I also haven’t slept much yet, either.  Insomnia wasn’t cured by staring at sleeping pills. Imagine that! Thankfully, my doctor is very understanding about this. More understanding to me than I am to myself. I sheepishly admitted to him that I haven’t tried it yet. That my health has been so much worse and I’d be more comfortable trying it when it settles down. I told him I know myself. If I take it when I’m doing poorly and then I worsen, my mind will equate it to the new medication. Even if maybe it wasn’t the cause. I admitted I’m afraid I’ll have an allergic reaction. I told him I’ve been so sick that the thought of adding side effects on top of it has been making me hesitant. He replied that of course I feel this way! Of course I’m worried! It’s rational. He said it’s rational for you because with your history, it’s true. You’ve had such severe reactions to so many things, including medications. You are being sensible. He then said that he thought I had made the right decision, that it is best to wait until my worsened health improves a bit. It was a relief. I hadn’t realized how much stress I was putting on myself each day, trying to force myself to take it even though I was dealing with multiple health issues that were worsening. I put so much pressure on myself. Plus I really want to sleep, so I have been disappointed in myself. I thought my doctor would be disappointed in me, too. Knowing he understands and thinks it is rational has really helped the stress fade away. When I’m feeling a bit better I will try this medication and my body will let me know when it’s a good time. I’m writing this for anyone else who might feel silly about being afraid to try a new medication. You aren’t silly. There are risks and side effects and it can be really nerve-wracking. You aren’t alone. I know I will work up the courage to try this. Hopefully I get some great sleep and not much else from it! We want to hear your story. Become a Mighty contributor here. Thinkstock photo via diego_cervo.

Lisa Prins

Holiday Gift Ideas for People With Chronic Pain or Illness

With the Christmas season coming up, I thought I’d write some gift giving ideas that may benefit those in your life who have chronic illness/chronic pain issues. These are simply a collection of gift suggestions that I would personally appreciate, or have been given in the past that really helped me, as well as ideas given by others who also deal with chronic illness and pain. 1. An electric heating pad, heating throw or heating blanket. I love the heating pad and heating throw I received as gifts. I use my heating pad all the time. My heating throw/blanket was used for so many years that it is broken now. 2. Loose, fuzzy socks. I live in my warm, fuzzy socks and I request more every year. My ankles swell a lot but fuzzy socks are always comfortable and never hurt. 3. Soft, loose, comfortable pajamas. I wear PJs all the time. I love ones that are soft and not constricting. Tight elastic bands or painful, scratchy materials make them really uncomfortable to wear. 4. A towel material, hooded robe. Many of my chronic illness friends have a difficult time showering. Sometimes we are so exhausted after showering that it can be heaven to wrap up in an absorbent robe, lay on the bed and dry as we lay there. 5. Comfortable pillows. We often need to spend a lot of time in bed or on the couch, and extra pillows that are soft and comfy are always handy! 6. Coloring books and items to color with. I personally highly recommend water color pen brushes.  They look like markers, but have a brush on the end. Going out of the lines if you have tremors still looks pretty, because it’s water colors, and you don’t have to press down and hurt your hand, if you have arthritis or any painful muscle or joint conditions. 7. Nice pill boxes, small pill containers, Med organizers are all things that can really come in handy and some of the nicer ones are a bit expensive, so we often buy the cheap plastic ones, but there are some beautiful products out there! 8. A slow cooker or pressure cooker. Cooking can be difficult when you are chronically ill. Crock pots and instant pots can really help with cooking healthy meals that aren’t exhausting. 9. A gift card to buy music or games online. Music can really soothe the soul and being able to have that music or those games on your phone while in the hospital or waiting in the doctor’s office can make the time pass easier. 10. Instead of a spa day, something I would really love would be an hour of cleaning services to help me clean. Or a week or month from a meal service. Or a friend offering to come clean or run errands for me or give me a coupon that they will make me one free casserole or something. Even an offer to drive me to an appointment. Gifts don’t need to cost money. An offer of help, in any little way, means a whole lot!! These are all my own personal wants, things I would love, that would truly help me or make my life easier. I know from being a part of some chronic illness forums that a lot of others would also like to receive these as gifts. Of course, not everyone has the same wants and needs, but I hope this can give others some ideas on what to give, if they are stuck. The most important gift of all is friendship and love. I’m most happy to receive those and am grateful to have amazing people in my life. Happy Holidays! We want to hear your story. Become a Mighty contributor here. Thinkstock photo via GYRO PHOTOGRAPHY/amanaimagesRF.

Lisa Prins

Using Humor to Cope With Having All My Teeth Removed

I wanted to share some of my thoughts and humor as I adjust to life with full dentures. I’m at almost four weeks post extraction now, and it’s been an interesting journey! I wanted to have all of my teeth extracted, and I’ve shared two articles about why with The Mighty. I’ve been in a dental nightmare for over a year, losing teeth every month and getting horrible infections, due to my health issues and medications like prednisone. My teeth rapidly started deteriorating about a year and a half ago. So. What is it like to get all of your teeth extracted when you’re in your 30s? Well. Wow. So much to say, it’s hard to know where to start. But I’ll start here… if I could go back, I would demand being fully sedated for the procedure and would not recommend anyone do it while awake, even with nitrous isn’t good enough. I thought I was a veteran, a champion of tooth extractions, having already lost 12 teeth in the last year. I was wrong. I had complications. It took over three hours. It was traumatic. I can’t lie. It was traumatic and far more painful than I anticipated. I have issues metabolizing dental freezing too quickly, so I felt most of the procedure. I had nitrous but it didn’t seem to do much this time. In saying that, I still don’t regret having them all extracted. I have another infection in my mouth right now and it is responding to antibiotics much better, and much quicker, than when I had teeth. In the past, I had a blood infection/sepsis from my teeth. So, this is huge for me, that my body is now able to fight these oral infections better and quicker. Some of the things I’ve faced will be unique, because I had a surgery date, but wound up needing them removed five weeks early. So I was not able to get what they call “immediate dentures.” They usually like to do immediate dentures. They work like a bandaid. I was warned I might have to wait up to six months to wear my dentures, since I didn’t get immediate ones. But, since I only had my bottom and top front teeth left to be extracted (12 in total), I was able to start wearing my dentures only 10 days after my extraction. That is very quick, but it’s because I didn’t have any back teeth to heal. Front teeth heal faster. However, I’ve had complications. Tons of bone fragments and an infection, so I’m only to wear the dentures as needed and only if they aren’t hurting me. Mine fit great and I love how they look. I’m incredibly happy with them. I’ve also faced some preconceived judgments from some in the medical community. Assuming I am an illegal drug user because I’ve lost my teeth at my age. That has not been enjoyable, but they all realize once they meet me that they were wrong. I still really dislike the disdain. What if I were an illegal drug user? I would still deserve respect. But… I’ll leave that thought to end here. Now. Here’s the fun stuff! My random thoughts! Will I ever get used to brushing my teeth while holding them in my hand??!! It feels so weird!!! Looks so strange! Hehe. I’m in public with no teeth. My mouth is naked. Ahhhhh I’m in public with no teeth! I hope no one notices! (It’s gone well. With my infection and the 10 days without dentures, I’ve needed to go out without teeth and it all worked out just fine.) Mmmmm watermelon and ice cream and icy slushy drinks, my gums are asking you to marry them. Please. Commit to me! You feel divine! Darn you salad! Why are you impossible to eat?! Clickety clack! Oooops!!! There goes my bottom teeth!!! Wow. Chicken is much easier to eat without teeth than I expected! And chocolate is hard to eat without teeth. Oh wait… It melts. Phew! We’re all good! I can still eat chocolate, everyone. No need to panic! I sound like Elmer Fudd. That’s so cool! I think my teeth are lonely in their container of water. Do they miss my mouth? They’ve been alone for days! My poor teeth. (Nothing like giving human feelings to dentures!) Hey. This could be beneficial! I look 20 years older without my teeth and 10 years younger with them! I can try for some senior discounts! And loiter around some 20-year-olds and pretend I’m with them! So… it’s been a funny, painful, sad and interesting journey so far. The pain was extreme, but I’m recovering. The emotional impact hits me at times, really hard. I made the decision to have my teeth removed; however, my teeth made it so it was the only rational decision. So, I do have moments of grief, especially when I have pain, or see how I look without them, or have difficulty eating. It’s not been easy. But it has been completely worth it! We want to hear your story. Become a Mighty contributor here.

Lisa Prins

Chronic Illness: You Shouldn't Ask People Why They Don't Have Children

Do you have kids? No? Why not?! No. Just no. The next time you go to ask that question as a small talk option, please reconsider. I had a nurse at my dental office ask me that, and it was uncomfortable for both of us when I answered “No.” She was visibly offended at my short response and seemed to be waiting for further information. Specifics as to why not. I did not want to give those specifics. When I went to the dentist that morning I had not emotionally prepared myself to have to speak about my miscarriages, my health issues and the likelihood that I will never have children. As uncomfortable as my “No” made her, I’m betting my specifics about emergency surgeries, unviable pregnancies, sepsis and miscarriages would have made her even more uncomfortable. It’s not an easy subject for me. I always assumed I would be a mom some day. My illness worsened when I was 18, so I figured I would improve and have my kids in my late 20s or 30s. But my health continues to worsen. After my miscarriages I came to the decision that I would likely adopt instead, once my health was under better control. That seemed like a good option. But my health isn’t getting under control. It’s worsening. I can’t even live by myself anymore. In my 30s I was ordered that it was not safe for me to live alone because of severe anaphylaxis and angioedema episodes where I would lose consciousness and be unable to administer the Epi-pen to myself. That, on top of my kidney disease and pain, makes it difficult to take care of myself most days. I could not take care of a child. So, when I’m asked if I have kids, all of these things come rushing into my mind. When my answer of “No” is treated as though I am being rude, or followed up with the question of “Why not?,” it is a painful spot to be put in. Please rethink the next time you are about to ask someone if they have kids. And if you do ask them, and their answer is abrupt, take that as a big sign that there are a lot of personal emotions going on and it is time to change the topic. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Marjan_Apostolovic.

Lisa Prins

Renal Tubular Acidosis: What It's Like to Be in Chronic Pain

Pain. Chronic pain. Unrelenting, all-encompassing, world-altering agony. What is pain? Pain is my constant companion. It clings to my body and my mind, at one with every cell in my body. It’s a heavy layer of grit that claws away at my clarity. Sometimes it’s a slow, seeping fog. Layer upon layer. A hazy, unrelenting blur upon my thoughts and reflexes. At other times it is a sharp knife that slashes into my soul, causing my thoughts and my mind to bleed. There’s no way to escape the cognitive effects of pain. I’m in the midst of excruciating kidney pain right now and I’m writing, despite how difficult it is, because I want to fully capture this. To truly convey how it kidnaps your thoughts and your life, when in the midst of it. It is taking me hours to write a paragraph that would normally take me a minute or two. But I want this to be real. So I’m doing it. It will take as long as it takes. The pain puts my body, my adrenaline, my heart rate and my blood pressure into hyperdrive. My thoughts are a mile a minute, racing along with the beat of my rapid heart, yet my thoughts are also smothered, dampened by globs of heavy, molten tar. Acute yet dulled by the persistent, heavy pulsing of agony. Rapid yet distorted. Deep yet distracted. Disoriented. Pain is not a choice. Pain like this can’t be controlled. There is no mind over matter when pain is at this level. You have to accept the pain and lower yourself into it. It can’t be fought. It won’t be ignored. If it could be, my mind would do that. The best my mind can do is just continue to survive. To cope. To somehow make it through the onslaught. The battle. To keep trudging along. To not give in to the tiny voice that whispers through sobs of agony and fear, that it wants to give up. That voice that feels like it simply cannot do this any longer. I am powerful. Not because I have pain. Not because I can power through pain. I am powerful because I can remain myself, at my core. I am powerful because I can retain my will to live, when the heightened pain and deadened brain could overtake me. Break me. I am powerful because I am still here, living my life to the fullest extent I can. Finding joy. Feeling love. Spreading hope. Feeding friendships. On my worst days I do very little, but it’s still doing all I can. That is what matters. That is strength. I am strong because although my mind may sometimes feel it can’t go on, I always manage to somehow make it through. We want to hear your story. Become a Mighty contributor here.

Lisa Prins

Distracting Myself From Chronic Pain Made Me Distracted From Love

Balance. Life is all about balance. And the scales will vary for everyone, what they need or want to balance. Life with chronic illness requires even more balance, which can be incredibly difficult. Especially when I’m trying to feed everything my soul needs to be fed. This body of mine may be inflamed and tired but my mind is ever thirsty. My soul, it needs to fly. I need nourishment and fulfillment, peace and excitement, friendship, love, passions and purpose. I need. I need so much. And sometimes, sometimes I am so busy filling that need that I forget to fill my loved ones’ needs. Distraction is so essential when living with severe chronic pain. Positivity and laughter. Community and friendship. Support and security. Passions and purpose. All are things my soul needs to thrive in this body that is so full of pain. But love. Love is what is most important to me. Yet, sometimes, all of these distractions I require, the very coping mechanism that keeps me going, can distract me from this most important thing. From the man who has been here with me, through things no one should have to experience. Who has cried with me and for me. Has stood by me and been my safety, my peace, my security, my laughter and my best friend. Tonight my heart is aching at the realization I have allowed my distractions to distract me from being the same to him. For him. I know, if asked, he would either say it’s not true. That I’m here for him. Or he would say it’s OK. That he understands. That I’m going through a hard time right now. But it’s not OK. It’s not OK to me. If I think of all my distractions, all my interests and passions, all of my needs, he tops my list as the most important. Yet, somehow, the very coping mechanism I use to help me remain my true self has led me into a selfish space that is not where I want to be. I want to be with him. Not just next to him. Not just in the same room with him. No. I want him to know I am fully present. I don’t want him to feel like he’s second to anything else, ever. Because in my heart he is not. He is first. Always. So, this balancing act, my level, needs to be re-examined. I need to rearrange things. As much as he makes me feel like I can always count on him to be here for me, in all ways, he deserves to feel the same way. I love the people I connect with online, people who understand chronic illness and pain. I love being able to provide support to them and accept support in return. It’s important to me. It will stay. It will need to be balanced. I love my music, and my art. I love my various hobbies and interests. They will stay. They will be balanced. But the man who has been more than I would ever expect anyone to be, he is top priority. Always. I never want to take him for granted. In my balancing act of life, he is the one thing that will never lessen in importance. It’s important to me that he knows that. I’m not sure if others experience this difficulty balancing their extra needs that become more essential when chronically ill, but I’m hoping, if others do, they can read this and know someone else, somewhere, is also trying to figure out how to level things out to just the right height and stumbling a little bit along the way. We want to hear your story. Become a Mighty contributor here.