Creaky Joints

@creakyjoints | partner
Katie Taaffe

The Power of Painting and Decorating My Osteoporosis Casts

I started painting my casts as a way to take back control of my diseases and do things my way in a world where my diseases often dictate most everything for me. I’ve had 36 hard casts, not including soft casts, post-surgical casts or braces. It’s an interesting life for sure. With a mixture of osteoporosis, Ehlers-Danlos syndrome, juvenile idiopathic arthritis, and injuries related to other illnesses, I am extremely fragile and unfortunately very prone to orthopedic injuries. I’ve torn a tendon and broken bones by simply walking. I honestly never thought I’d get to this point, but my doctors aren’t even sure of exactly how many bones I have broken because they fracture so easily that I don’t even notice anymore. And we only “count” major bones (no ribs, fingers, toes, noses, etc. make it into the tally). I realized if I have to wear casts, I might as well have a little fun doing it! Which is a tad bit outside of my comfort zone, I must admit. I’m the kind of girl who likes to blend in, who likes to shy back into the corner of a crowded room and never speak unless spoken to first. Most of my life is spent with at least one extremity in a cast. This means most of my life is out of my control and spent with people staring at me for looking different and having something “wrong with me.” Painting my casts takes those two negative concepts and makes the experience and therefore my entire life a little more positive. And honestly hopefully a little more positive for anyone who sees me with walking artwork. By the time I got to cast number 19, I’d learned that no amount of dark clothing will keep curious eyes from staring at you. If they’re going to stare at you anyway, you might as well give ‘em something good to look at! Thus, fiberglass became canvas. By cast number 25, I gained enough confidence to “celebrate” the occasion with rhinestones (offset by a few sharks for that fierce factor). And by cast number 30, more than one specialist doctor was taking pictures and videos of each new piece of art for social media. People have even kept certain favorites. It’s worth the awkward yoga, twisted, sometimes painful pretzel poses I have to do to reach some parts of the casts, reversing images in my mind to paint upside down on leg casts, painting with my non-dominant hand at times, and even figuring out how to paint a leg cast when my home health nurse told me lovingly that she wasn’t impressed when a back injury left my cast halfway finished in a sunset ombré — not up to my typical glitzy par. I had to figure out a way to put my own original artwork on a cast I could not reach no matter how hard I tried.  For those wondering, I refused the generous help of a few kind souls as it needed to be my own work, so painted images on thin paper and then did accept help in having my paintings Mod Podged to my leg according to my dictated placement. That way, I can still say I painted the flower and bumble bee that were on my cast. One of my favorite phrases in life is “Rainbows in the Rain” — whether that is referring to finding the rainbow in the rain when you are faced with a difficult patch in life or being the rainbow in the rain for someone else when possible. I figure that by painting my casts, I make the best of a logistically and emotionally difficult and rather painful time in breaking bones/tearing tendons/having surgeries and thus find my own rainbows. As for bringing rainbows to others, I’ve even been stopped by people in the airport while traveling to a hospital out of state and had a literal line of people ask to take pictures with me and my painted double leg casts because they loved my joyful spirit and artwork. The left was painted purple ombré with flowers and mermaids, and the right was painted red ombré with flowers and dragons, so they were pretty awesome. The moral of the story is just because your disease dictates a great deal of your life for you, often in a “negative” way, it doesn’t mean you can’t flip the narrative and take control, make it positive, be creative, and do it your way! Try to remember that you have a disease, your disease doesn’t have you. Plus, a little spark of color and dash of bling never hurt!

Amanda Greene

How #HighRiskCOVID19 Is Connecting a Community During the Pandemic

As a woman living with lupus, rheumatoid arthritis, fibromyalgia and other autoimmune conditions, I had hoped to write an article for The Mighty this month because March is Autoimmune Awareness Month. I had no idea that being a person with autoimmune conditions would make me a part of the vulnerable population. While scrolling through my Twitter timeline last week, I began to notice a new hashtag, #HighRiskCOVID19, and I wanted to learn more about it and the patient leaders behind it. I reached out to Molly Schreiber and Jed Finley for insight and a quick interview. Who came up with the idea for the hashtag? Molly: As a chronic illness patient it was really frustrating and disheartening to keep seeing those at “high risk” being brushed off with regards to the coronavirus. I felt like I was spending so much time and energy trying to educate people. I messaged Joe Coe of CreakyJoints.com and asked if he thought my idea of putting faces to the immunocompromised was ridiculous. He, of course, said no, and that’s when I reached out to our group. We threw around some ideas in our group and landed on #HighRiskCovid19 because it really stated our purpose in the least amount of characters. So glad that Charis Hill melded all of our ideas together! How did the organizers of the account come together? Molly: Honestly, I didn’t overthink who I messaged that day. I looked for advocates that seemed to be trying to spread the same message as me, who were aligned with CreakyJoints.com (because Creaky Joints gives out factual information about the disease and is a trusted resource), and who I hadn’t worked closely with before. Honestly, this group became instant family. It’s amazing. Aside from the people we’ve reached, the connection we’ve made in our small group is priceless. When did you decide to start an account? Jed: Starting an account was Dawn Gibson’s idea. She pitched the idea to the group Tuesday night, and I scrambled to grab the handle before anyone else did! Fortunately, it was still available. From past experience when something goes viral, people want to snatch up as much as they can. We were happy we could call @HighRiskCovid19 our own. What are your plans for the account and hashtag? Jed: Because our popularity was going worldwide and countless people were using the hashtag as their own, we wanted to set up a place where people who are at high risk could have a central place to meet. That is our hope for the account @HighRiskCovid19 that we can use it to reach out to people who had used the tag and check on them during this time, but we also want people to have a place to go to get information and ask questions during this uncertain time. How can people who are #HighRiskCOVID19 join the conversion and community? Jed: Follow the @HighRiskCovid19 handle on Twitter and post using the #HighRiskCovid19 tag. Share your stories about how being immunodeficient puts you at a higher risk of catching any virus. The media paints this picture that only old and sick people are at the highest risk of catching COVID-19. The media tell us that if you are young and of good health, you are fine. This simply is not true. The purpose of #HighRiskCovid19 was to let the world know there are other groups out there who need to be protected as well. So, write posts, make videos, share your story in a blog. Whatever you need to do. Just use the tagso we and the world can find your story. Connect with @MollySchreiber @JedFinley and Amanda @LAlupusLady Greene on Twitter.

Tawnee Torres

Adjusting to Physical Changes Due to Rheumatoid Arthritis

A year ago I had an incredible opportunity to be interviewed and photographed. It taught me about who I thought I was and who I want to be. What a humbling and needed experience. It’s a Friday in January and it’s cold outside. I woke up to a whole 7 degrees. My hip is howling, feels like an infected tooth and my hands are claws that refuse to obey my asks. It’s 8:23 a.m. and I am unbelievably tired. Did I sleep? I blinked and thought sleep found me. My body tells me this is a lie. I have plans today. Lots of plans. But first, let’s get off this couch. I’ve been sleeping on the couch because my handsome husband snores and I cannot sleep through it. This couch kinda sucks, but at least I can get some sleep on it. Today a talented photographer is coming to take pictures of me and my little dude. This is for a short essay I wrote for RA Health Central. I talked about the side effects of having a chronic illness the docs don’t tell you about. I’m so excited. Pretty cool, right? I have a list of things to do before she gets here at noon. The first thing is to move this tired old body. I manage to drag myself out of the crevices of this couch and start to clean after shoving a handful of meds into my face. With the house and the kiddo ready I slap some makeup on. I’m not doing too bad. I actually manage to get ready before the photographer showed up. Good job kid. Sophie, the photographer, shows up and she is incredibly cute. Blonde, gorgeous skin and sporting MAC’s Russian Red on her lips. She is cool, effortlessly beautiful as well as professional. She makes me smile. To be 20-something again. Sigh. We take some photos in my living room, outside and at a local bookstore. Sophie shows me a few of the frames. I am shocked. I look old. I am 39. I am not blind to the silver threads weaving their way through my black hair (which I love) or the laugh lines around my mouth. But this… I don’t recognize myself. It hurts. I am ashamed, sad and taken aback. Who the hell is this lady with the shaggy mom haircut? Who is this lady with the loose cheeks, sharp cheekbones and angry forehead? It’s me and I hate it. There is no softness in my face. I am all hard angles. Sophie turns the camera towards me and says, “Look at how cute this is!” I think who is that woman? I want to cry. RA has walked all over my face. The pain has left its mark on my face. This is how the world sees me. I want to hide. My face is pinched because I am in pain in this photo. My face is always pinched because I am always in pain. Why does this matter so much to me? Maybe because it is proof my RA is taxing. It is so taxing I cannot smile normally without feeling weird. I cannot really laugh without my face asking me behind the scenes, “girl, what are doing?” I am not looking for compliments or pity. This is a confession of vanity and insecurity. I’m underweight now when I used to be curvy, healthy with lots of shiny jet black hair and beautiful skin. My RA is now running this show. My face is littered with acne, purple veins and bruises under my eyes. A smooth forehead is replaced with a scowl line between my eyebrows, and my eyebrows are painted in because they fall out. I am sallow and tired. My pain, my fatigue is on display. My face no longer knows how to be soft. This makes me so damn sad. There is not one part of my body RA has left untouched. I am getting older. I am also getting harder. Pain does that to you. It erases the soft lines from your face. It creates angles where there were none. I was not ready for this. I was not prepared for losing my body and my hair while feeling completely miserable. I was not prepared for the grief of losing my physical sense of a healthy me to be so complete. I was not prepared to look at a photo of myself and see a stranger. You don’t realize how much you avoid the mirror when you are unwell until someone takes a picture and shows you. First world problems, right? I remind myself that the only constant in this world is change. My body will wane and wax with my RA. I will adjust. Yes, beauty is only skin deep. I do embrace and understand this. I also know on the day you look at yourself in the mirror and have no idea who you are looking at, it does something to you. You may think you’re secure in who you are physically until one day you’re not. You may think you’re solid enough that this won’t phase you, yet it does. You tell yourself these feelings are shallow. There’s people out there who are in darker places then this. Still here you are, pity party central. I was ashamed of myself and my feelings, and deeply disappointed in my reaction. It makes you question everything you thought you knew about yourself. It makes you feel small, insecure, silly and oh so vain. So you put in more work. Work to come terms with your disease all over again. Work to love the shell you’re in even though you feel like this home is no longer yours. This is a normal reaction to the loss of control over your whole body. This is grief and you do not get to choose how it manifests itself. I am evolving. My standards of beauty and confidence are too. My disease is at its peak and there are repercussions to that. I don’t have to like it. I don’t like it. But in order to stay healthy I must accept it. My body is fighting an internal war. You adjust and gain perspective. Clarity and gratitude come in like rain, washing you, waking you up. You learn to love yourself a little more. Reinventing my own idea of physical confidence is part of living and respecting myself. What’s a few lines and angles or hair?

How to Join the Don't Punish Pain Rally

As a long-time Crohn’s disease sufferer, pain was a constant reminder of my illness. Up until three years ago, I lived in a hospital bed. With Crohn’s, comes debilitating pain, high fevers, kidney stones, and constant trips to the bathroom. Three years ago, pain management was introduced into my life and everything changed for the better. A clean diet, training daily at the gym, and a small dose of opioids afforded me the ability to become a fitness competitor, a patient advocate, and an author. Two years ago, I started advocating for people in the Crohn’s community that could no longer access pain medication due to the over-corrected Centers for Disease Control guidelines for opioid prescribing. Weekly advocating turned into daily advocating. I would get on the phones with doctors, nurses, risk management, or whoever I needed to, in order to get a patient pain relief. In October 2017, I decided we needed nationwide media coverage and I organized a nationwide protest. I called it the Don’t Punish Pain Rally. It started with a Facebook page with five members and it grew quickly. I announced the first rally would be in April 2018. I had some amazing people help me because I was not Facebook savvy. I wanted to give people all the tools they needed to organize a successful rally. So I created a letter that they could send to their senators, congresspeople, and various governmental agencies. I created a press release that could be sent to various media outlets and gave members ideas to put on signs that could be held at the rally. Most importantly, I tried to be creative in getting media to attend. There was an incredible amount of work involved and many of us had to put our families aside to achieve what needed to be done. Before we knew it, April’s protest was here and it was a success! We had a goal and achieved it. But soon after April’s rally, membership continued to grow, and this time, providers were reaching out to me. I decided we would protest again, and this time around, I also offered help to Canada. I announced September 18, 2018 would be the next protest. This time around, things would be different. I decided this protest in September would be created so that all could attend. If a patient couldn’t attend the rally at their capitol, I suggested a myriad of places to protest: pain management centers, hospitals, state/city venues, TV stations, and different pharmacies. I created a website for people that didn’t use social media. Although I don’t raise money, I knew I needed a radio spot and advertising was a must. The great thing about protesting is you can organize one for very little money. Most of our members provide volunteer services and are happy to assist new members. Doctors, journalists, and thousands of others have joined the Don’t Punish Pain Rally National Facebook page so they can be a part of what I consider to be a “movement.” I organized the “Doctor’s Collaborative” due to the high number of providers that were contacting me with their stories about how restricted their ability to prescribe opioids to their patients is. I wanted to create a forum where they could support one another but do so anonymously. So I created that through the website. I’m proud of what has been accomplished and I pray that we can affect change throughout the country with the Don’t Punish Pain Rally Organization. To join the protest and find out the nearest venue to you, visit us on our website or you can join the national Facebook page (once you’re on the Facebook page, you’ll be guided to your state page). If the venue closest to you is too far from where you live, you can find another venue and we will help promote you and help you get media attention. Providers as well as members can visit us at DontPunishPainRally.com.

Angila Waddell

Changing the Inner Dialogue of an Ill Mother Who Feels Guilty

It’s the end of the school year. The last week. Awards, fun days, field days. Fun right? Exhausting? Yep. Exceptionally exhausting for those of us who live with chronic illness, causing us to miss some of the fun days. The all too familiar mother’s guilt sets in my inner monologue. Not to mention the embarrassment. This is where I have to change my inner dialogue to make it through. A daily battle. Why are my children so compassionate? Why are they making fabulous grades? Why do they understand if I miss it? Because I’ve learned to let go of what I can’t do. And look at what I can. Instead of how things used to be, which was basically giving up. I can love them. I can teach them in my day old pjs. I can hold out until this small bump in the road is over. I can bond, cuddle, and be involved in their lives. I can celebrate at home. I can show them that life isn’t always easy, but we stick it out. And, I can make egg salad, while stuck on the couch…And, I can ask for help – showing them that your tribe and the people that surround you and support you are very important. None of us are going to measure up to our own expectations, but we can make a way to accept it, which is my daily goal. And although, this road isn’t what I would’ve chosen, it’s one that I can navigate through. Congrats to the graduates and to the parents that can and did get it done the best way we could. Getty Image by Alexandra Romanova

Cheryl Crow

To My Chronic Illness Medical Team

There is no finish line. You won’t walk out of the operating room in a moment of triumph saying, “We got it! She’s better now.” The dramatic moments in our relationship are so quiet they would never make it into a medical drama, yet they engulf the room in a searing way that I know we both feel. You are the unsung heroes of the medical profession –providers who care for patients like me who have chronic, complex, invisible illnesses. Your daily grind is likely a marathon, not a sprint. It’s also an “Amazing Race” type adventure where the rules are constantly changing. What worked yesterday doesn’t always work today, and the treatment plan is a multiple choice question where the answer is conceivably all of the above, none of the above, or somewhere in between. It takes a special type of person to thrive in an environment of such consistent ambiguity, and I deeply appreciate those providers who patiently, lovingly and competently wade into the murky waters of supporting patients with chronic conditions. To the rheumatologist who has supported me since I was just on the cusp of adulthood, who has celebrated my highs and lows from a pain-free wedding to a huge flare-up of pain, illness and inflammation after childbirth: I love how we start each appointment by collectively ogling over the latest cute photo of my young son. The way in which you take a genuine interest in me as a person, and my illness in the context of what’s meaningful in my life, is not lost on me. I’ll never forget the way you paused and looked me in the eye as you gently used the word “deformity” to describe my affected toes. That pause and the moment of connection showed me that even after your decades of medical training, after the word “deformity” has become normalized to you, you know and you care what this word means to me. It seems to come easily to you, to experience a patient’s symptoms through their patient’s eyes, but I know how rare it is after seeing hundreds of providers in my lifetime. Thank you for your empathy, for laughing and crying with me, and for your constant, competent care. To the psychologist who has helped me cope with the effect my chronic illnesses have on all aspects of my life: It feels sacrilegious to attempt to put some of the magic of therapy into words. All I can say is thank you for being present during my pain and my triumphs, for helping me connect so many dots of my present and past, and for helping me ultimately be a better human for myself and those around me. To the physical therapist who, after the two hour intake appointment where we discussed my convoluted medical history and perplexing present symptoms, simply but firmly said, “It’s not too much. This is what I do:” I had gotten so used to fearing I was “a little much” for a provider, so used to fearing that my symptoms were too “unusual” for anyone to make sense of, that I was taken aback by his calm confidence. It is beautiful to behold a person who is 100 percent present and clearly in their element, and it is doubly incredible to witness this phenomenon while being in a vulnerable state, where you walk into the appointment trying not to hope too deeply for the solutions you so desperately need. Like many chronic illness patients, I have longed for Dr. House figures who thrive on the complicated, unusual cases, yet in reality they can be hard to find (particularly those who also respect the psychosocial dimensions of care). I am so fortunate to have not one, but two wonderful physical therapists on my team. Thank you both for braving the wilderness of the weird, unusual and challenging cases! To the naturopaths who helped me get to the root of my severe gastrointestinal issues, after numerous other professionals had insinuated that they were “in my head:” Thank you for believing me, and for finding solutions when I was on the cusp of losing hope. I’ll never forget the time I simply burst into tears the moment you cracked the door open; I was in such a delicate place, and your calm confidence and clinical competence led me on the path to restoring parts of my health that had been chronically impoverished. Thank you. To the occupational therapist and certified hand therapist who made my beautiful purple wrist and thumb splint, which allowed me to carry my baby comfortably when I was experiencing a rheumatoid arthritis flare: In that simple one hour appointment, you provided a tool that has enabled me to hold my child comfortably while protecting my joints everywhere from the beaches of Hawaii to the trenches of 2:00 a.m. wake-ups in the comfort of my own home. Thank you. To the rheumatology professionals who visited their state and national representatives to advocate for issues that help patients receive the (often expensive) care they ethically deserve. On a similar note, to the medical school instructors like Dr. Helen Emery who have doggedly ensured that medical students are exposed to authentic patient voices at events such as “Rheumapalooza” at the University of Washington: Thank you for going above and beyond your job description, for the benefit of your patients. And finally, to the medical students out there who haven’t yet selected a medical specialty: Please, please consider going into a specialty such as rheumatology (or better yet, pediatric rheumatology, where there is a severe nationwide shortage at the moment). In choosing one of these fields, you have the chance of a lifelong relationship with patients who will often see you as, quite literally, our only hope. This is my ode all the providers of patients with chronic, invisible illnesses. Patients are sometimes vocal about their negative experiences, particularly those who have diseases which are notorious for being minimized by the medical community (such as autoimmune diseases, chronic pain and other invisible illnesses). Yet, it is precisely these negative experiences that make us all the more grateful to those of you who do the important work of helping us manage our conditions in the most dignified, effective way possible. To my personal providers above, and to all the other providers around the world who are doing the incredibly important and often seemingly thankless job of managing these complex illnesses: I see you, and I thank you!

Angila Waddell

What to Know If You're Struggling to Complete Small Tasks Today

Every morning, before my feet hit the floor, I am in a state of surprise. From sleeping in one position, or medicine being out of my system – I am in shock, after 10 years of living with this monster that took over my body. I think to myself, “I can’t do this. I cannot stand up. I cannot walk across the house. I cannot go to the grocery store. The farm feed store. I cannot… anything.” But I do. I get up. I walk across the house. Make coffee. All in time to get heavy anti-inflammatory meds in time to get in the car and drive to the bus stop (usually in time). There are times I want a trophy for doing the smallest of tasks. A ribbon for walking to the bathroom, which leaves me out of breath at times (costochondritis). A gold medal for going to the store, which leaves me exhausted the next day. But, guess what? It doesn’t work that way. I wonder how many people are feeling this? Possibly they lost a parent, and dragged themselves to the grocery store. A single mom who used her last five dollars to make a meal work out for her four kids. A wife who works two jobs to make ends meet, savoring her family time. We may be drowning, but we are all each other’s life preservers. Our words are our trophies. So, gold medal to the single mom making dinner work. A trophy for the wife/mom working overtime. A ribbon to the chronically ill parent making it through each day. A sash for the grieving wife, daughter, mother, son – for pushing yourself to do the seemingly impossible I see you. We can do this. Give someone a trophy of encouragement today. It may be their lifeline.

Christina Lowe

Ankylosing Spondylitis: Deciding Whether to Park in a Disability Spot

This has often been a great debate of mine since I got the thing years ago. To use or not to use… That is the question… I often find myself staring at this ominous piece of blue plastic in my purse like a curse. Once upon a time, I would have given anything to have a disability placard. “Just get me closer to the door, I don’t care, who feels like walking,” said my youthful ignorance. Now every time I see that thing in my purse I’m reminded that I have a choice: I can either park in the disability spot, park far out or try and find something close enough. Most days I look for something close enough and leave the disability spot for others who “really need it.” If I’m not feeling too bad I will park a little ways out and walk, as the exercise is good for ankylosing spondylitis. On those bad days when I have to use it, or when I grocery shop and have to use it, I dread it. I have been approached once and told that I look too healthy to need a disability placard, while limping into a store, by a woman who parked in a disability spot too and had managed to beat me into the store. I just stood there dumbfounded. This was the first time I had ever been approached and told that. I stood there for a minute and then left the store in tears. Needless to say, I didn’t use my placard for a while after that. Two days ago I used it again at a local store I go in all the time. I try to park as close as I can, but this time I had to use it. I’m flaring really bad and I’m weaning off the prednisone I’ve been on for four months (I can’t breathe and my chest feels like it’s in a vice). It was a day before my shot for my ankylosing spondylitis (none of my bones are moving properly) and my migraine meds are all messed up at the pharmacy (so I have a dull headache, bordering on migraine, with light sensitivity and nausea) so I’m a disaster, but I’m still trying to hold my family together and get some groceries. As soon as I walk in and pass the counter I hear two girls say, “She doesn’t need that disability pass.” I don’t know if I was already so defeated already physically that I mentally didn’t care or what, but for those who like to pass judgment on others, there is a special place for you and I hope nothing ever happens to you or someone you love that no one can see on the outside, but it is literally killing them on the inside. Yes, I may look fine – that is what an invisible illness is – but make no mistake, my insides are wrecked and if my outside looked like my inside, you wouldn’t question once my use of the disability placard. You would then be talking behind my back about how scary I look. 1. A doctor has to write a letter to DMV stating the need for a temporary/ permanent disability placard. 2. You cannot just pick one up from Walmart. If someone has one, they obviously need it and do not need to justify their need for it to anyone. See #1. 3. You do not know what someone is going through on any given day, so if you do not have something nice to say (in hushed tones behind their back, or to their face), do not say anything at all. I should never have to feel guilty for using my disability placard and neither should anyone else who has one and looks at it with shame. We didn’t do this to ourselves, we didn’t ask to be sick, and given the choice to not be a sick 35-year-old, I would choose that over this. However, these are the cards I have been dealt and I will make the best of it no matter what. We want to hear your story. Become a Mighty contributor here.

Diane Talbert

What It's Like Having Psoriasis as an African American Woman

I am an African-American woman in her 50s with very dark skin who in addition to battling psoriatic arthritis since my 40s, has battled plaque psoriasis — the scaly skin that itches and flakes — all of her life, erythrodermic psoriasis — the best way to describe this is that my whole body goes on fire — several times in my life, and guttate psoriasis — spots that covered my entire body — at one point in my life. What’s been especially challenging in my lifelong struggle with psoriasis has been the general lack of information as well as a medical community lacking in knowledge when it comes to psoriasis in people of color. When I was a teenager I used to go to the library and try and find pictures of someone who looked like me. I spent countless hours searching for just one photo. After months and months of searching and coming up with nothing, I believed I was alone in this world and there was no one like me with psoriasis. I did find some photos of Caucasian people with psoriasis, but their psoriasis never looked like mine — nowhere close. My psoriasis was always very dark and thick.  They had red or pink patches of thickened skin that were covered with whitish scales, just like the articles that described what psoriasis looked like. This was not me. In the town where I was raised, we didn’t have a physician who knew anything about psoriasis. At the age of 5, I was taken to the nearest town that had a dermatologist. When I started going to this doctor, a Caucasian male, he actually looked directly at my skin and said he knew I had psoriasis by my white silvery scales. As a child of color, this was extremely confusing because, guess what: I didn’t have white silvery scales on me! Then over the next 40 years, I went to many doctors. One doctor would tell me he knew I had psoriasis because it was on the back of my elbows and on the front of my knees. This was odd and very funny to me since I had psoriasis over 70 percent to 80 percent of my whole body, my whole life, not just my elbows and knees. Not only did every doctor I went to tell me a different story — they put me on a different treatment. I remember seeing a doctor who gave me a tube of cream. Now, remember, for most of my life, 70 percent to 80 percent of my body has been covered with this disease, and putting creams on me made me a wet, greasy mess — not a great look for someone who worked in the corporate world. What’s more, the tube only lasted for two days. I saw a doctor in my early 20s who started me on an ultraviolet light treatment. It started working pretty well for my psoriasis. My dermatologist decided that he needed to keep me in the box longer because the light needed to penetrate my dark skin — his exact words. Well, that backfired: I was burned over my entire body. I had to take a week off from work and go to a burn specialist. Needless to say, I never went back to that doctor, but I never openly questioned authority either; I just wasn’t raised that way. When I was in my 40s, someone told me my skin was different from people who are not like me. They said I needed a doctor who knew about black skin. I believed this; mostly because I was always covered in psoriasis that never got better and my psoriatic arthritis started to kick in really bad at that time. Also, there were not many doctors of color when I was growing up, and definitely not many knowledgeable about psoriasis and psoriatic arthritis. So I set out to find a doctor of color who specialized in psoriasis; I found one. While in the care of this doctor I developed the worst case of psoriasis ever, erythodermic psoriasis which is a rare and serious condition that makes most the skin surface and the body inflamed and you have intense shedding. I had severe itching and pain. I went to this doctor in tears and horrible pain. I actually thought I was going to die. I looked like something out of an alien movie. The dermatologist looked at me and said, “I don’t know what to do for you.” Well, right then and there, I knew the color of my doctor didn’t matter! That day I made up my mind to search out and find a good doctor who specialized in psoriasis. I did my research and found three in my area. I made appointments with them the following week. The first dermatologist I went to took my hand and said, yep, you have psoriasis. He wrote me a prescription for cream.  Remember, I am still 90 percent covered at this time and in the worst pain ever. I never went back. The second dermatologist spent over 35 minutes with me. He examined my skin, nails, scalp and did blood work. He asked if any of my family members had psoriasis. He asked what had been happening in my life. He asked if I was under any stress, had a recent illness, and what kind of medication I was on. There was no need to see a third doctor; I was in love with him that first day. No one ever took that much time to actually find out about me. He is Caucasian and the best doctor ever. I have been with him for 11 years and have never looked back.This is what I learned: When it comes to finding a good doctor, color should never come into play. But how can you find a good doctor? You need to have a good understanding of psoriasis before your appointment. Make sure you have a list of questions to ask, such as what causes psoriasis, how do you diagnose it, what can trigger flare-ups, what are the risks of my medications, and can you treat it? You need to educate yourself. Right now I know just as much about my psoriasis (and psoriatic arthritis) as my doctor does. And never be afraid to question authority. I wasn’t raised that way but I’ve learned to speak up for myself and others with psoriasis and psoriatic arthritis. The color of your doctor doesn’t matter, but my personal opinion is that if you are a person of color that you should consider getting a biopsy if the doctor doesn’t know for sure what you have. Back in the day when dermatologists thought that people of color didn’t get psoriasis, getting a biopsy was the only way to prove it. However, we have so many knowledgeable dermatologists today that they might just be able to examine your skin and tell if you have psoriasis. Indeed, finding a good dermatologist is the key. Just getting the proper treatment has its benefits. When I finally found the right doctor and proper treatment, I became 90 percent clear and felt 100 percent better. Getting the proper treatment changed my life. Unfortunately, awareness for psoriasis (and psoriatic arthritis) is low in the African American community and other minorities. My goal is to help find more research and bring more awareness to this disease so that we can get the proper treatment that is needed. Over the years I have been an active advocate for psoriasis and psoriatic arthritis, and I am now Executive Director of the nonprofit Psoriasis Network Support. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by ASharpPhoto