Eileen Davidson

@chroniceileen | contributor
Mother who writes about life and advocacy with a triple whammy of arthritis (RA/OA/Fibromyalgia). Ambassador for The Arthritis Society and member of the Patient Advisory Board for Arthritis Research Canada.
Eileen Davidson

How I Explain Rheumatoid Arthritis to Those Don't Have It

How can I begin explaining the confusing, illusive and invisible debilitating autoimmune disease known as rheumatoid arthritis? My name is Eileen Davidson. I am a 33-year-old female from Vancouver B.C., Canada. I would like to tell you I have been an esthetician for nearly 14 years, but my career was cut short at the age of 29 when I was diagnosed with autoimmune disease seropositive rheumatoid arthritis and placed on long term disability before my 30th birthday. This is how I explain my disease to others and a few tips. I am all for sharing the seriousness of arthritis in hopes that some day more is done to combat it. Disease awareness is important — it can lead to better treatment, research and, maybe one day, a cure. Also, it may open others up to showing chronic pain patients more compassion and understanding. But are others willing to listen? Drop The Autoimmune Bomb I find most people don’t hear the rheumatoid part but arthritis then instantly think of the most common type of arthritis; osteoarthritis which leads to thought of creaky joints in old people. However… Rheumatoid arthritis and osteoarthritis are not the same thing. Autoimmune diseases are when your immune system mistakenly attacks your other healthy tissues. With rheumatoid arthritis, the cells attacking each other begin in the joints with this fluid called synovium. When that becomes inflamed, that is where the trouble begins. The inflammation leads to pain, swelling, bone erosion and deformations, as well as can cause  damage to a wide variety of body systems, including the skin, eyes, lungs, heart and blood vessels. Because my immune system is compromised I have  harder time fighting off infections. Other autoimmune diseases include lupus, diabetes and multiple sclerosis. These are commonly known and I mention them because I believe it makes them understand the autoimmune part a bit better, plus the seriousness of arthritis. It’s common to have more than one chronic illness at a time, including multiple forms of arthritis or autoimmune conditions tagged along with mental health issues like depression and anxiety. Talk About Your Symptoms Rheumatoid arthritis is much more than just joint pain. Talk about the fatigue, cognitive dysfunction, hard time fighting off infections. How do those symptoms affect you on a day to day basis? What do you struggle to do daily because pain or fatigue gets in the way? Following Up with The Pharmaceutical Medication Bomb We know the side effects and risks of the medications to treat rheumatoid arthritis. I am currently on a monthly infusion that could perforate my bowel! I wish pharmaceutical drug commercials did more disease awareness when advertising drugs for specific diseases. I wish they showed just how bad the disease can get. Particularly to treat rheumatoid arthritis, there is a long list of different types of medications and even longer list of side effects that come with those meds. One of the main drugs to treat RA is methotrexate, which is a very small dose of chemotherapy. While small, it still comes with side effects like hair loss, increased depression, fatigue, vomiting, diarrhea, an even harder time fighting off infections and monthly testing of my liver. The medications are often as bad as the illness, but oh to not become even more disabled before I am 40 because of my progressive autoimmune disease… Explain The Impact It’s Had On Your Quality of Life It’s no lie that RA has had a tremendous impact on my life. It is important to remember that every case of rheumatoid arthritis is different. The younger the diagnosis the poorer the outcomes on their lives, though. I definitely thought I had more time, at 29, to live a normal healthy life where I could work, take care of myself, my son and still have energy for a social life, but RA robbed me of the ability to do the job I went to school for and has made basic daily life a struggle. Share Articles or Videos I’ve had readers message me to tell me they read my articles to a loved one so they would understand the disease better, which honestly is about the biggest compliment my writing can get. I’ve had many tell me they felt alone until reading my blog. You are not alone. If you look hard enough, we are out there. The disease is often invisible, but just because you can’t see it, doesn’t mean we can’t feel it. Some suggestions for them to read is The Arthritis Foundation or The Arthritis Society official websites. These are the main non-profit organizations in North America for arthritis. Everything stated is up to date and true. Become an Advocate I have had a significant reduction in BS from others since I become an advocate for my condition. Maybe they are too afraid to question an expert? If you are interested in becoming an advocate, start by contacting your local arthritis charity chapter and volunteer as an advocate or ambassador. My first step was to become an ambassador with The Arthritis Society.You can also sign up for local patient advocate boards. I am a part of the Arthritis Research Canada‘s arthritis patient advisory board. If you are American there is the Arthritis Foundation and Arthritis Research National Foundation. Create a blog, YouTube channel, whatever you are comfortable with. There are many ways to advocate your illness and the benefits are tremendous for yourself and the disease! Take Them To Meet Your Doctors If they are close enough to you, maybe hearing it from a professional will help make them understand a little better. Ask them to come to one of your appointments with a specialist or take them to see you get an infusion. And Remember, You Can’t Change People Who Don’t Want to Understand If someone isn’t being supportive, compassionate or understanding of your condition, remember that chronic illness effects 1 in 4 people, arthritis 1 in 5, there might be a good chance that they will understand it at some point in their life, too. You really don’t understand rheumatoid arthritis unless you have it yourself.

Community Voices

The Anguish of My Invisible Pain: A Poem of Pain

You are my unexpected darkness that tore apart my life
I never knew the anguish you could cause me in ways I could never be prepared for
You attack me from the inside, down to my very cells
There’s 360 reasons for you to attack me
Your poisonous inflammation torments my heart, lung, brain, blood, and soul
The pain you cause me are but invisible to everyone but me
It is cursed with stigma and misconceptions, even though 6 million of us Canadians can relate to my suffering
I still feel you with every breath and every step
You taught me misery through your antagonizing grasp on my soul, my dreams, desires and passions
You made me grieve in ways I never have before
You caused me mental and physical suffering
You forced me to stop working and succumbed my life to poverty
Your grasp also affects my son, my whole reason for moving forward
You forced me to stop dressing the way I liked to, the slightest uncomfortable touch feels like razors on my skin
You forced me to stop dancing, you made me so weak and fearful of falling
You forced me to feel nothing but pain and anguish, I can not escape you
I see no empathy or warnings from you, I’ve had to learn to listen to your hidden red flags
You twist and turn my body, each contortion more painful than the last
You made me afraid to love and others afraid to love me
You make me more susceptible for heart disease
My pain is often ignored because I am a woman, I am young, I do not look in pain
You can not see the illness you torment me with
You make me so cold, inside and out
You make anyone holding me painful yet I yearn for it
You make the things I am passionate about physically and emotionally painful to do
You make me question my self worth and if I am a burden
You make me question myself as a mother, as a woman
Your name is #RheumatoidArthritis

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Paige Wyant

Grace Beauty Is Launching Accessible Makeup Products

For those who experience mobility challenges due to chronic illness or disability, applying makeup can be a challenge. Small, slender applicators of mascara, eyeliner or lipstick can be difficult to grip and control, especially when being used near sensitive areas like the eyes.But a new makeup brand is hoping to change that.Grace Beauty, a makeup company and online community, is creating beauty products to help those with disabilities apply makeup more easily. “Anyone, regardless of ability, should be able to use any beauty product they want to,” the website states.The company, set to launch later this year, is initially focusing on mascara, though they plan to expand to other makeup products in the future. Grace Beauty currently offers a selection of three add-on products that can provide better grip, control and safety when using a mascara wand. 1. The Ring Grip The Ring Grip makes it easier to maintain a grip on your mascara, without having to grip it too tightly. View this post on Instagram The Ring Grip was created as a general aid for anyone. When attached you don’t have to hold as hard, nor worry about loosing your grip or picking up the mascara from the floor. The rubberband will tightly connect to most mascaras on the market while the ring will be big enough for even the biggest fingers. What do you think of it? Can it be helpful and do you like the design? We'll post more of our products over the coming days!A post shared by Grace Beauty (@gracebeautyforall) on Mar 13, 2019 at 5:17am PDT The post reads: The Ring Grip was created as a general aid for anyone. When attached you don’t have to hold as hard, nor worry about loosing your grip or picking up the mascara from the floor. The rubberband will tightly connect to most mascaras on the market while the ring will be big enough for even the biggest fingers. 2. The Safe Grip The Safe Grip is rubbery with a large, bulbous shape to make the mascara wand easier to hold for those with limited flexibility or dexterity in their fingers. View this post on Instagram The Safe Grip is easy to hold, gives a wide angled grip and ensures better control for all kinds of users. Material is rubbery, flexible but hard which will ensure a grip even though the fingers can’t wrap fully around the grip. This product we’re especially interested to hear you opinion on!A post shared by Grace Beauty (@gracebeautyforall) on Mar 14, 2019 at 1:28am PDT The caption for this product states: The Safe Grip is easy to hold, gives a wide angled grip and ensures better control for all kinds of users. Material is rubbery, flexible but hard which will ensure a grip even though the fingers can’t wrap fully around the grip. 3. The Square Grip The Square Grip is rubbery and has a hexagonal shape to make it easier to grip. It also attaches to both ends of the mascara tube to make it easier to twist open and close. View this post on Instagram The Square Grip attaches to both side of your mascara to make it easy to open, hold and control in a discrete package. Simple, minimal and with a rubbery feeling that will ensure a better grip. What do you think of it?A post shared by Grace Beauty (@gracebeautyforall) on Mar 14, 2019 at 2:20am PDT Though the products are not yet available for purchase, many have already expressed interest on Instagram because of the challenges they face due to illness or disability: “This is amazing. Between hEDS, arthritis, and my tremor, I’d pretty much given up most makeup. I love the idea of The Ring Grip so much because in addition to just being able to hold onto it better, I wouldn’t have worry about flinging it across the room.” – kburnard“I can’t wait to try these! I have MS and refuse to give up on my make up even when I have a relapse, this is going to be a game changer!” – christina__ruby“I have rheumatoid arthritis which has left me with carpal tunnel, holding mascara and brushes hurt big time, thank you for coming up with helpful aids so women everywhere can still do their make up and feel good about themselves whilst being comfortable” – the_gook_goddess“As someone who has arthritis and ehlers danlos syndrome makeup is a passion of mine but is quite difficult sometimes. The fact a brand alone would try to accommodate for people like me is beyond amazing. Thank you for what you do. I will definitely be sharing this around !!!!” – _kyliescorner According to Grace Beauty’s website, the add-on products can be used with any major mascara brand. Each add-on product is listed for £8 (approximately $10.44). The products are available for pre-order, with a 20 percent discount through Apr. 1, 2019.To learn more about Grace Beauty and offer your feedback, you can join its online community. Community members can collaborate with the company to help it create better products, learn about early releases, get early bird specials and share their stories with others in the community.

Ellen Stumbo

Summer Camps for Kids With Disabilities by State

Several years ago my best friend called me after she spent a week at a Joni and Friends family retreat, “You are coming next year,” she said, “It is the best vacation your family will ever have.”This particular camp offers a week-long camp experience for families who have a loved one with a disability, whether it is a child, a spouse or a sibling. Everything in the camp is accessible, and a one-on-one helper is provided for younger kids and for adults who need it.The following year, as we made plans to go, I filled out a detailed form for each of my kids with disabilities. Weeks before camp, I had a phone conversation with a coordinator so they could match each of my kids with a helper that could meet their needs. For example, my kids did not need to have a nurse as their helper, but other kids with medical conditions may require their assistant to have medical knowledge.The first day we arrived we were greeted by the camp staff and our helpers waited with posters they made for our family. For five days, these two women were part of our family. I did not have to feed my kids, they did. I did not have to chase my kids around, they did. I did not have to worry about behaviors or safety. I did not even have to go swimming with my kids if I did not want to because they did! It was indeed an amazing experience. Every afternoon I met with a small group of moms, my husband met with a small group of dads and my typical kid met with the other “sibs.” For the first time, my kids with disabilities were in an environment where there were several other kids with the same disability. It was so empowering for my daughter with cerebral palsy to see other people with cerebral palsy, from kids her age to camp staff.After that week, we realized that camp was not only possible, but it could be a fun experience for our kids. A friend of mine told me about a camp for kids with Down syndrome her daughter has been attending since she was 10 years old. Another friend of mine, who is disabled, told me about the camp she attended growing up and how empowering it was to have that experience away from her parents as many other kids do. Plus, the experience of being in an accessible environment with your own community!Unfortunately, there are not as many camps offered for kids with disabilities (or families) as there are camps for typical children, so these camps tend to fill up fast and early. Joni and Friends begins their registration in January.To help you pick a program that works for your child or family, we compiled a list of different camps here in the U.S. At the top of the list are camps that are offered in multiple states. The rest of the list goes in alphabetical order by state. If there’s a camp we missed, let us know in the comments below.Unless otherwise specified, these camps offer a “traditional” camp experience, meaning campers have access to typical camping activities such as swimming, canoeing, fishing, drama, archery, arts and crafts, nature-based activities, campfires, sports, etc. The camps are unique in that they incorporate skill building through play and activities. While not every camp offers every activity, these camps provide a robust and authentic camp experience for all.We did not include the cost of each camp, as cost can vary even within the same camp based on age. If your child is on a state grant or a state waiver, it may cover the cost of camp, so make sure to ask your caseworker. Several camps offer scholarships for campers based on need, and a few are offered at no cost. Multi-State Pals : These are camps for youth and adults with Down syndrome. Some begin at age 14, others are for adults only. Camp Pals host sessions in Maryland, Massachusetts, Illinois, Ohio, Washington D.C., Maine, New Jersey, New York, North Carolina, Pennsylvania and California. Live Up: These camps are for adults with Down syndrome. Campers have a one-on-one helper. Live Up camps host sessions in Pennsylvania, Massachusetts , New York, California and Washington D.C. Special Touch Camps : Special Touch offers Christian faith-based camps for people with intellectual and physical disabilities. All camps have full-time nursing staff. They offer sessions in Oklahoma, Florida, Illinois, Kentucky, Georgia, Ohio, Wisconsin and Arizona. Lift Disability Network : Life Disability Network offers family camps in Florida, Missouri and Minnesota. Cristo Vive : These are Christian faith-based family camps located in Minnesota, Wisconsin, Idaho, Texas, Alaska, Ecuador and Peru. Easterseals : Easterseals is the largest provider of c amping and recreational programs for children, adults, and families. It offers 30 camps nationwide in Alabama, Arizona, California, Colorado, Connecticut, Delaware, Florida, Iowa, Illinois, Indiana, Kentucky, Massachusetts, Maryland, Nebraska, New Hampshire, New Jersey, New York, Ohio, Oregon, Pennsylvania, Tennessee, Texas, Virginia, Washington and Wisconsin. Joni and Friends Family Camps : Joni and Friends is a Christian faith-based family camp for kids and adults with disabilities. Those who need extra support have access to a one-on-one helper. Camps are available in New Hampshire, Michigan, California, Pennsylvania, Texas, Washington, Alabama, New Mexico, Arizona, Tennessee, Ohio, Missouri, North Carolina, Nebraska, Indiana, Oregon and Minnesota. Champions Special Ministries : This faith-based camp works by partnering with local churches to offer day camps for kids and adults with disabilities. It has sessions in Colorado, Arkansas, Texas, Kansas, Missouri and Oklahoma. Adam’s Camp : These camps offer intensive therapy, family support and recreation for children and teens with disabilities. It has locations in Colorado, Massachusetts and New Hampshire. SOAR : SOAR provides outdoors adventure camps for kids with ADHD and learning disabilities between the ages of 8 to 25. It has sessions in North Carolina, Wyoming and Florida. Camp Abilities : Camp Abilities is a sports camps for children and young adults who are blind, deafblind or have multiple disabilities including visual impairment. One-on-one coaching is provided. Sessions are available in Alaska, Arizona, Florida, Georgia, Iowa, Maryland, Massachusetts, Michigan, Missouri, Nebraska, New York, North Carolina, Oregon, Pennsylvania, Puerto Rico, Texas, Utah and Washington. Alabama Camp Smile : This camp is hosted by United Cerebral Palsy. It is designed for campers ages 5 to 50. Each week they serve campers of similar age groups, so check out the weeks available for your child’s age group. Camp ASCCA:  This is an Easterseals camp designed for campers ages 6 to adult. It offers week-long and weekend-only camps. It also has family camp options. Hope Heals : This is a Christian faith-based family camp that’s for the whole family. The camp provides scholarships so that families can attend for free. Arizona Arizona Magic of Music & Dance: This is a summer theater camp for children and teens with physical and cognitive disabilities. It also offers a two-month theater and care program for adults with developmental disabilities.Camp Civitan: This camp offers weekend programs throughout the year and week-long camps during the summer for children, teens and adults with developmental disabilities. The facility is wheelchair accessible. Arkansas Camp Aldersgate:  This is a fully accessible outdoor camp for children and teens with disabilities. They offer summer camps, weekend camps and specialty camps. Leaping Beyond Sports Camp : This is a day camp that provides access to adaptive sports for people with disabilities. California Camp Krem : This summer camp is for children and adults with developmental disabilities. In addition to its summer camp, Camp Krem offers a year-round respite program. Whispering Winds : This is a Christian faith-based family summer camp. It offers a week-long program for kids with disabilities and their families. Exceptional Needs Network Camp: This camp is specifically for campers ages 6 to 22 with developmental disabilities. Each camper has a one-on-one counselor. Camp Harmon : This is an Easterseals camp for campers ages 8 to 65. Each counselor has only three campers. The camp also offers a week for family camp. Colorado Colorado Lion Camp: This camp offers week-long summer camp sessions and weekend respite camps throughout the year for campers starting at age 8 to senior adults with various disabilities.INSPIRE Adventure Camp: This is a month-long summer camp for youths and adults with developmental disabilities who are over the age of 5. Connecticut Camp Horizons: This camp offers two- and four-week camp sessions for children and adults with developmental disabilities who are 8 and older. During the summer, a special “Masters Program” is offered for campers over the age of 40.Oak Hill Camp: Oak Hill is a camp for youth and adults with developmental, intellectual, physical and sensory disabilities, including visual impairments. Delaware Children’s Beach House: This camp offers weekend camps throughout the year and summer camp programs for children with disabilities.Down Syndrome Association of Delaware Summer Camp: This is a free day camp for children with Down syndrome, ages 3 to 13, and their siblings, ages 3 to 10. Florida Camp I Am Special : This camp is for campers with intellectual and developmental disabilities. Georgia Camp Twitch and Shout: This camp is a seven-day summer camp for children ages 8 to 17 who have Tourette syndrome.Camp No Limb-itations: This summer camp is for children ages 7 to 18 who have limb differences or amputations. Camp Braveheart : This camp is for children with congenital heart defects. They have two groups, junior campers between 7 and 13 years old and teen campers ages 14 to 17. The camp offers multiple outdoor activities. Hawaii Camp Imua : This is a week-long camp experience for kids with disabilities ages 6 to 16. Idaho Camp All-Stars : This camp offers week-long day camps for school-age children with disabilities ages 4 to 21. Illinois Camp Discovery : This is a week-long camp for children with chronic skin conditions. The camp is free for families. Camp Cilca : Camp Cilca is a Christian faith-based camp that offers one session for people with disabilities of all ages. Campers may choose between a two-night camp or a four-night camp experience. Indiana Victory Lane Camp : This is a four-day family camp for families who have kids with disabilities. Only one session is offered each summer. Camp Riley : This is a camp for children with physical disabilities ages 8 to 18. The camp is 100 percent accessible and has both indoor and outdoor activities. Iowa Camp Courageous : This camp offers week-long day camps for children, teens and adults with disabilities as well as year-round respite weekends. Campers are separated by age. Special Camp : This camp offers a one week only Christian faith-based camp for people with disabilities. Hidden Acres Wonderfully Made : This camp is a Christian faith-based family camp. Kansas Camp Kidz Rock : This is a day camp for kids on the autism spectrum. Kentucky Courageous Kids : This camp is for children with chronic illnesses or medical conditions ages 7 to 16. The camp is free of charge. Lousiana MedCamps : Medcamps offers week-long camps divided by condition and age. Some weeks are designed for kids with intellectual and developmental disabilities, others weeks for kids with physical disabilities or kids with diabetes. These camps are for campers ages 6 and up. Louisiana Lions Camp : This camp offers eight sessions during the summer for children with disabilities, cancer, diabetes and respiratory conditions. The camp is hosted by Lions Club and offered at no cost to campers. Maine Camp Strive: This is a day camp for tweens, teens, and young adults, ages 11 to 24 who have a developmental disability. They offer sessions during the school year and summer.Camp CaPella: This is a summer day and overnight camp for children and adults with disabilities who are 5 and up. Maryland Camp Greentop : This camp offers a variety of camping options from family camp to travel camps for adults, where campers go on “away” trips all over the U.S. They also offer traditional camps and outdoor/tent camps. The age of campers is dependent on the camp. Some experiences require campers to be 16 or older. Massachusetts Camp Promise : This camp is for campers who have neuromuscular conditions and who are 6 and older. This camp is offered free of charge. Michigan Camp Sunshine : This is a Christian faith-based camp for campers ages 12 to 50 who have developmental disabilities. Carl’s Family Village : This is a camp for people who are deaf, deafblind and hard of hearing. It also offers family camp options. Minnesota True Friends : This camp is for people with physical and developmental disabilities as young as 5. The camp offers traditional camp options, respite care and equine therapy. Camp Knutson : This camp offers one summer session for campers with Down syndrome ages 10 to 21. Ironwood Springs : This is a wheelchair sports camp for campers ages 12 and up. They offer one week of overnight camp, where campers are coached by Paralympic athletes. It is for people of all athletic abilities. Missouri Camp Barnabas : This is a Christian faith-based camp for children with disabilities and chronic illnesses and their siblings. Campers are 7 and older. The camp has a fully staffed medical facility with doctors and nurses and campers have a one-on-one counselor. Wonderland Camp : This camp is for children 6 and older, who have disabilities. It offers week-long camps and weekend camps as well as weekend retreats for moms. Camp Encourage : This camp is for campers on the autism spectrum between the ages of 8 and 18. They also have “peer-model” campers of the same age. Camp Courage : This camp is specifically for adults with disabilities. Joshua Center Summer Camp : This camp is for people with neurological disorders. Campers can register as soon as they’re entering third grade. Montana Big Sky Bible Camp : This is a Christian faith-based camp for people with disabilities. The camp is raising money to build a new facility that is fully accessible. Nebraska Camp YouCan: This is a three-day overnight summer camp for children with epilepsy between the ages of 7 and 17.Camp Monroe: This is a day camp for youth with developmental disabilities such as autism, cerebral palsy, Down syndrome and spina bifida. It is for campers ages 3 to 21. Nevada Sunshine Nevada : This camp offers three sessions — one for adults with disabilities, one for children and teens with heart conditions, and one for children and teens on the autism spectrum. These camps are free of charge. New Hampshire Wediko Summer Program : This camp is for kids between the ages 9 to 19 who have social, emotional and behavioral challenges. Camp Inter-Actions : This is a camp for children 8 to 15 who are blind or visually impaired. Zebra-Crossings : This camp is for children with rare and chronic conditions. It also offers family camp options. Camp Starfish : This is a camp for children who have anxiety, ADHD, learning disabilities, autism, pervasive developmental disorders, oppositional defiance disorder, anger problems, sensory processing and integration disorder, depression, bipolar disorder, inflexible explosivity, reactive attachment disorder and other extra needs. There is a one-to-one staff to camper ratio. New Jersey Camp Oakhurst: This camp offers two-week sessions for youth with developmental disabilities up to age 25 and sessions for campers with autism of all ages.Camp Fatima: This camp offers week-long sessions for children and youth with disabilities between the ages of 5 and 21. The camp is free of charge and each camper has their own counselor. New Mexico Camp Rising Sun : This camp is for kids on the autism spectrum and their peers who are 13 to 17 years old. Southern New Mexico Adaptive Sports Camp : This is an adaptive sports day camp. Their sessions run for three days each. New York Camp Ramapo: This camp is for children with disabilities ages 6 to 16. Each camper is assigned their own counselor. Length of camp can be between one to nine weeks in length depending on what is best for each camper.Marvin’s Camp for Children with Special Needs: This camp is for children on the autism spectrum between the ages of 6 and 21. They offer a six-week session and a seven-week session. Camp Reece : This is a residential summer camp for kids with disabilities. Children need to send in copies of their IEP and psychological evaluation to be considered. Southampton Fresh Air Home : This is a residential summer camp for children with physical disabilities ages 8 to 18. The shortest program is seven days. The other two sessions offered are three weeks long. Camp Ramah in the Berkshires : This is a Jewish faith-based camp for kids with disabilities. North Carolina Talisman Camps : This is a camp for children on the autism spectrum or with ADHD who are between the ages of 6 to 22. Victory Junction : This camp offers year-round camp options for medically complex children. Their sessions are divided by conditions and are for children between the ages of 6 and 16. North Dakota Camp Grassick : This camp offers six summer sessions for kids and adults with disabilities. Ohio Stepping Stones : This is a day camp for children 5 and older who have disabilities. The Arc : This is a day camp for children ages 4 to 22 who have disabilities. Oklahoma Camp Aldersgate: This camp offers five camp sessions for children ages 6 to 18. Each session is dedicated to children with specific disabilities including autism spectrum disorder, muscular dystrophy, spina bifida, diabetes, heart conditions, arthritis, kidney disorders, cancer, bleeding disorders and asthma. The session for children with autism lasts six weeks. All other camps are a week long.Camp Barnabas: This is a Christian faith-based camp for children 7 and up with chronic illnesses and disabilities as well as their siblings. Campers have a one-on-one counselor.Camp Clap Hands: This is a three-day summer camp for children ages 8 to 18 with disabilities. Oregon Mt. Hood Kiwanis Camp : This camp is fully accessible for children and adults with disabilities. All campers have a one-on-one counselor. Camp Yakety Yak : This is a day camp for kids 5 to 15 focused on social skills. They also offer a day camp option for those between 16 and 21 to work on social skills in the workplace. Pennsylvania Camp Jaycee : This is a residential camp for children and adults with disabilities. Camp Lee Mar : This is a seven-week co-ed camp for campers ages 7 to 21 who have moderate learning and developmental disabilities. Rhode Island Camp Starfish: This camp offers several camp programs for kids with social, emotional and learning differences, including a day camp for ages 5 to 12 and an overnight camp for teens ages 7 to 17.Camp Wannagoagain: This camp is sponsored by the Autism Project. It’s a two-week summer camp for children, teens and adults on the autism spectrum. South Carolina Camp Lakey Gap: This camp is open to autistic people of all ages. It has a low staff to camper ratio and places emphasis on building self-esteem, finding friendships and exploring new hobbies and activities.Camp Twitch & Shout: This is a one-week residential camp for young people ages 8 to 17 with Tourette’s syndrome.Jaycee Camp Hope: This camp is for kids over the age of 7 who have intellectual disabilities. Camp Rise Above : This camp offers day camps for children with disabilities and conditions such as heart and kidney diseases, craniofacial differences, sickle cell anemia, brain tumors, epilepsy, Tourette’s syndrome, traumatic brain injuries, asthma and cerebral palsy. This camp is free of charge. South Dakota Camp Gilbert: This camp is geared specifically for kids ages 8 to 18 who live with diabetes. Tennessee Young Life Capernaum : This is a Christian faith-based camp open to high school-aged students with intellectual and developmental disabilities. Camp Conquest : This is a Christian faith-based overnight camp for people with disabilities and chronic illness of all ages. Camp Ability : This is a Christian faith-based day camp for young people with disabilities between the ages of 6 to 25. Texas Camp CAMP : This camp is run by Children’s Association for Maximum Potential and offers opportunities for people with disabilities ages 5 to 50 and their siblings. Charis Hills Camp : This is a Christian faith-based camp with sessions for kids 7 to 13 years old and teens ages 14 to 18 with learning differences and social difficulties. Camp Summit : This camp is for people with disabilities of all ages. It has separate sections for people with physical disabilities, developmental disabilities and dual-sensory loss. Camp Blessing : This Christian faith-based camp is open to people with intellectual or developmental disabilities of all ages. It is a fully accessible residential camp. Lions Camp : This camp has three different sections — kids with physical disabilities (ages 7 to 16), children with Down Syndrome (ages 12 to 16) and kids with type-1 diabetes (ages 8 to 15). Utah Camp Kostopulos : This camp is hosted by the Kostopulos Dream Foundation, and is for people with disabilities of all ages. Vermont Camp Ta-Kum-Ta: This is a family camp specifically for kids ages 7 to 17 who have or have had cancer and their families. This camp is free of cost.Bart Center Summer Camp: This camp is for people with disabilities of all ages. It offers adaptive skiing during other times of the year.Camp Daybreak: This camp is for kids with disabilities between the ages of 8 and 11. Virginia Camp Gonnawannagoagain : This camp is hosted by FACT and is open to young people on the autism spectrum between the ages of 6 and 30. Washington Warm Beach Camps : This is a Christian faith-based day camp or overnight camp for people with disabilities ages 15 and up. All campers are assigned a “buddy.” The camp limits some conditions and behaviors, including those with diabetes and active seizure disorders. West Virginia Camp Gizmo : This camp is hosted by West Virginia Early Childhood Training Connections and Resources. It is a five-day camp that teaches caregivers and professionals how to use assistive technology. A limited amount of slots are open to students with disabilities to help train attendees. Wisconsin Christian Disciple Farm : This is a Christian faith-based family day camp for young people ages 3 to 21 with disabilities and their families. The camp is located on a farm.

Eileen Davidson

Annoying Things People Say About Rheumatoid Arthritis

Living with chronic illness, particularly an invisible one like arthritis, can attract some unwanted comments and advice from time-to-time. Here is a list of the most annoying things people say to me about my chronic illness, and what my crosses my mind as I hear them, constantly, but just smile and nod. 1. “But you don’t look sick.” Hours of exercise, a healthy diet, cutting back on sugar, alcohol and overall changing my lifestyle because of my illness will do that. You don’t have to look sick to be sick. You don’t have X-ray vision, unless you’re Superman. 2. “But you are so young.” Guess how much arthritis cares about age? None. There is no age of consent for chronic illness. Kids get arthritis too. 3. “You are sick because of your medications.” Yep. My meds are some serious drugs that come with some pretty hefty side effects and risks. But the risk of my disease affecting my heart, lung, or eyes, which could lead to fatality is much greater. The desire to not be in a wheelchair before I am 40 also does it for me. Join the conversation by answering the question below: 4. “Have you tried turmeric?” I have tried so much turmeric my poop should be orange. Beets, green juices, dark cherries, all sorts of color poop with added flax seeds. 5. “Have you gone keto/raw/vegan? It cured someone I know.” While diet does have a significant impact on most illnesses, I’ve gone down that route and can tell you what benefits I’ve experienced. Not all cases are the same, and their medications probably had something to do with it too. Isn’t it fun having everyone nitpick your diet because you are chronically ill? 6. “Don’t trust doctors or Big Pharma.” Please keep your conspiracy theories to yourself. 7. “I think I have that in a finger.” I said rheumatoid arthritis — it rhymes with hemorrhoid because it is a lot sh***ier than osteoarthritis. You’d know if you had rheumatoid arthritis over osteoarthritis. 8. “You’ll be OK, everything will be fine.” Unless you’re a psychic, you don’t know that. With chronic illness comes great anxiety and serious questions about our future. 9. “At least it’s not cancer.” But the medications and lowered immune system make me more susceptible to various cancers and other co-morbidities. 10. “At least it’s not fatal.” How about I punch you in the arm and say at least it’s not a gun shot? 11. “It could be worse.” I have a progressive illness; chances are it will get worse. Co-morbidities are a bitch. Can you relate to Eileen’s story? Easily share your own by downloading our new app.   12. “Just be positive. You are sick because of your attitude.” While attitude is huge, it is impossible to be positive all the time with chronic pain, fatigue and the impact disease has on one’s life. If you catch someone in a weak moment, don’t tell them to think positive. Sometimes we just need to vent and be heard. I’m just trying to explain why I sleep a lot, why I use a cane, why I am in so much pain and why I never know how I am going to feel when I wake up each day and often have to cancel plans. Depression is a common symptom with rheumatoid arthritis. 13. “You should get out more.” It’s my debilitating illness, chronic pain, fatigue and compromised immune system keeping me in, thanks. 14. “Just push through it.” How about I push you through something? Like a window. That hurts too. 15. “It’s just arthritis.” Even Dr. Google can tell you no. 16. “Everyone has chronic pain, illness or something ‘wrong with them.’” Is it also attacking their organs and slowly immobilizing them? Not all pain is equal, not that I like to play the competition game but there is more to my condition than just pain. 17. “I get tired too.” Yes, of course you do! It is a natural body function to fall asleep daily, but when sleep doesn’t leave you refreshed in the morning, it’s chronic fatigue and way different than being tired. It’s my body responding to medications and disease activity. 18. “Have a coffee or energy drink.” I am pretty sure the pot of coffee I drank this morning wasn’t decaf. Coffee ain’t touching this fatigue. 19. “Yeah, I had that too.” Once you have RA, you have it for life. A very very small amount of people may go into remission, like 6 percent of the 1 percent of the population who have RA. 20. “I know someone with your condition, but they can work.” Not every case is the same! Plus people have different lives and different priorities. One of my biggest decisions to go on disability was so I could conserve my energy from crushing fatigue so I could be a good mother. Remember fatigue is a very debilitating symptom, and some find they struggle even more with the fatigue than the pain. The same goes if you live with the condition and criticize others for not working. 21. “How does that affect sex?” Asking a girl you’ve just met how her invisible illness affects sex is sleazy. Hearing comments like these can be so frustrating. Remember though, most people are trying to be helpful and kind but just don’t know any better.

Eileen Davidson

What I Want for Christmas as Someone With Arthritis

I am grateful to live in one of the mildest parts of Canada when it comes to harsh winters. I do wish I didn’t feel those cold brisk days in my bones. I wish I could enjoy winter without extra pain. I wish rainy days didn’t make me feel so foggy and tired. Winter months are a struggle with autoimmune arthritis. How I have come to almost fear the colder months. Please get your flu shot or stay in if you are sick. You can’t always tell who has a weakened immune system; a simple cold can affect us significantly. For Christmas I wish I didn’t have limitations and adversity in life. I wish there was a cure for arthritis. Sometimes, though, it is adversity that teaches you the true meaning of gratitude and support. My grandmother passed away days after Christmas. I wish Christmas didn’t remind me of her passing and how my sense of family also died with her. I wish Christmas wasn’t the last time I saw my aunt who passed away the same week I was diagnosed with the same autoimmune form of arthritis. I wish I could work and pay for my son’s Christmas presents. It wasn’t long ago where I could, but not since my diagnosis of rheumatoid arthritis which landed me on the number one cause of long-term disability in Canada. His birthday is 12 days before Christmas which is added celebration as well as stress, cost and energy during the cold busy December. I am grateful to have my son to spoil during this month. He makes the cold evenings at home full of love, warmth and laughter. I am grateful my son at 5 years old was able to tell me he understood I can’t work because I am sick. I wish I could be healthy and strong enough, financially stable enough to take him to all the Christmas events around the city. I too want to be amazed by the lights, scents and love Christmas can generate in the air. I can barely keep up with my own self-care routine with how busy this season gets. I am running on near empty. I wish my pain didn’t increase if I am not careful not to overdo it. I wish treating my disease wasn’t so expensive, others wouldn’t make comments on the price we are willing to pay for some relief or to just keep moving. I wish others understood the guilt that comes with being chronically ill. I wish dating wasn’t so difficult as a chronically ill single mother. I wish men saw me for me, not that I have a disease. I wish I wasn’t alone this Christmas. I wish my invisible illness didn’t make me invisible to others. I wish it didn’t make me afraid to start anything because my fear of rejection. I am thankful this year my father is in town visiting from China. He is approaching 70 and has more energy than me nearing 33. I am grateful for the help; I wish having company didn’t tend to trigger fatigue and I could keep up with my senior father. I wish I was used to being in pain with someone other than my son around. I wish pain didn’t make me feel this vulnerable and weak. I am thankful those around me have adapted with me and know that when I ask for help, it is difficult for me to do so but it is the physical limitations I now live with, though invisible, that do require me to ask for help. I am grateful for my son’s father setting up the Christmas tree and lights; he knew that would be too physically demanding on me now, even though I have done it in the past. I wish my disease wasn’t progressive. I am thankful for Amazon with their affordable toy prices and to-my-door delivery. Having debilitating chronic fatigue can make the Christmas rush even more difficult; I’ve learned to pace myself so I can get everything done and not toy too much with fatigue. I am thankful for the Christmas Bureau, but not thankful for the people who ruin it for others. I wish there was more for us single disabled parents because we are a demographic who gets looked over quite often, even more so when your disability is invisible. I wish people weren’t so quick to judge me because I have tattoos; it’s not the reason I can’t work. It’s the debilitating autoimmune disease you can’t see inside me. I wish my hands were strong enough to use the garlic press. I wish chopping vegetables didn’t make my wrists sore. I wish standing didn’t make my knees, hips and back ache. I wish looking down to concentrate on what I am doing didn’t make my neck sore. I wish I didn’t have difficulty lifting the turkey out of the oven. I am thankful for pre-cut vegetables. I am thankful for my electric mixer. I am thankful for all pre-made options that don’t taste like garbage or are full of garbage. I am grateful for the foods that are also a medicine and don’t irritate my stomach or pain levels. I wish there was a cure for arthritis. I wish others understood the disease, showed us more compassion and understanding. For now, I will just have to be grateful for what I have until that cure comes. I am grateful for those who have dedicated their time to research and finding treatments for those living with arthritis.

Eileen Davidson

Why It's Hard to Work a Job With Arthritis as a Single Mother

Being on disability is no walk in the park. It’s a struggle both emotionally and financially. When you are already dealing with a battle inside that no one else can see or feel, it’s just added stress when your spoons are all used up. This list is to remind myself to not feel guilty or to lose hope for finding something I can do. It is also to show anyone who questions why a 31-year-old female cannot work but looks healthy or who occasionally sees me out but can’t tell I am in pain and intense fatigue as there are no visible signs of disability or illness. I am on disability because I have rheumatoid arthritis and osteoarthritis, and along with these debilitating diseases comes the emotional and mental struggle of anxiety and depression, which makes basic everyday life difficult enough already. 1. Concentration Brain fog and pain make it difficult to concentrate. Add in side effects of medications that can cause cognitive dysfunction and sometimes I just really have trouble thinking. The cognitive dysfunction caused by my rheumatoid arthritis makes my thoughts and actions feel as if I am moving or thinking through drying cement or there is an invisible wall up stopping my mind from moving forward. I am often confused and my memory is hazy, especially if I am over-tired. Rheumatoid arthritis makes it difficult to think, learn, remember and perform various mental tasks on a daily basis for me. Not true: I am “stupid.” I am a “dumb blonde.” I am “high.” (OK, maybe a little, but it’s because I strongly consider marijuana a natural pain reliever!)   2. Pain Sitting hurts after a short period. Standing hurts after a short period. Laying down hurts after a short period. Arthritis is painful and there are about 360 joints in the entire body that may be hurting. Pain leads to a number of issues including painsomnia and swelling from inflammation. It makes movement difficult. Ouch. I am constantly squirming in pain, and over-using my joints is pretty easy when they are in a flare. Not true: The pain is located only in my joints. 3. Fatigue I live the life of a spoonie and we are a community of people with different chronic illnesses. When you are a spoonie, your energy is limited. We describe ourselves as spoonies to help others understand our energy levels. A spoon is an indicator for our energy, so say we start off with 10 spoons a day (whereas a healthy person has unlimited spoons). Take a spoon away for everything you do like shower, prepare food and eat, grocery shopping, etc. Some activities take more than one spoon and every day is different. Once we are out of spoons we have no choice but to become one hell of a tired, hot mess and that can happen any time during the day. When I do have a bit more energy I try and catch up on everything else. I find between the pain and fatigue I move at what I call arthritis speed. Not true: I am “lazy.” 4. Flare Triggers What I went to school for is too much for my body now. I have to make sure I do not overuse my joints, otherwise they become sore and I can further damage them. I can’t lift anything heavy and I can’t stand or sit for very long. The majority of my pain and issues are in my neck, hands, left hip and right knee. I experience pain in these joints pretty much 24/7 and overusing them is easy. Something as simple as scrubbing the shower can irritate them. 5. Stress Is a Major Trigger Stress is a major trigger that can cause a person’s health to go funky. Add in already compromised health and it can get worse. It’s pretty easy to become overwhelmed when chronically ill and being on disability. Not True: It’s “all in my head.” 6. Emotional Challenges (I am still adjusting to being chronically ill.) At first disability was like a vacation I really needed. My body was broken down from years of being an esthetician, especially my hands and back. I wanted to care for my son more and I still consider being able to have the time to dedicate to my son a blessing. I knew I had to say goodbye to my beloved job and find something new, but as simple everyday tasks became more and more difficult, the possibilities of what I could do for work started to lessen drastically. This has led to feelings of being a burden, guilt and isolation. Not true: I am being “dramatic.” 7. Side Effects Glorious, oh glorious side effects. They can range from a number of different experiences like night sweats, diarrhea, nausea, depression and mood swings to suicidal thoughts. We’ve all seen the infomercials of pharmaceutical drugs – the lists are always so long, weird and scary. When chronically ill, you usually have to go through a wide array of medications until you find the right one that will work for you. I’ve tried over a dozen and am still searching for the right ones. This takes years for some people. I am at two and a half years, still a baby to being chronically ill compared to many. I’ve known people who’ve waited for close to over six years before finding something that works. Sometimes the side effects are as bad as the disease but I want to fight like hell and beat these diseases. Not true: How damn happy the people on those pharmaceutical drug companies are. 8. My Health Care Routine Is Already a Full-Time Job Between all the doctor appointments, physio, yoga, exercise, healthy meal preparation and everything I already have to do as a single mother, my spoons are already overused. I have to put my health and my son as number one. And I need time to rest and relax! Like a lot of time! It’s pretty boring. Not true: I’m just “making excuses.” 9. How Would an Employer Understand? Who Would Even Hire Me? Seriously, I would love to find a job where they don’t care if for days or weeks at a time I need to rest or I’ve got a pile-up of doctor appointments that week. Who doesn’t mind my constant mistakes caused by that pesky cognitive dysfunction or my slow and flaky arthritic speed? How would they understand how much I already have on my plate? Not true: I don’t want to work. Trust me, I do. It’s pretty boring watching daytime television and being isolated. Not working results in me feeling like a burden, guilty and useless. It’s not a wonderful feeling. I’m also pretty damn broke. I would love to find something I could excel at while chronically ill. I am always hopeful. 10. Every Case Is Different There are over 100 types of arthritis, all ranging in different cases and degrees. Mine was already bad enough that my rheumatologist referred to me as a difficult and severe case. Just because you can’t see that severity doesn’t mean it’s not there. True: Just because you know someone else with arthritis who can work doesn’t mean every case is the same. 11. I Have a Severe, Debilitating Disease Even if you can’t see it doesn’t mean it’s not real. I am not “too young” for it. There are 4.6 million Canadians alone with a form of arthritis, and that’s only those who have been diagnosed. Approximately 350 million people worldwide have arthritis. Not true: Everyone has arthritis. If you say that then you haven’t really been listening to what I’ve been saying. 12. I Devote What Little Energy I Have to My Child and Raising Awareness When Not Taking Care of Myself I am convinced my care for my son is driven by my love for him. It must be the endorphin of my love for him that makes me strive through arthritis to be the best mom I can be. My passion for awareness drives me further. Not true: I want a man to pay for me. 13. My Doctor Suggested It The first time I met my rheumatologist she told me she would sign any form I needed. I knew she was hinting to me to take disability. I asked her if I should be on disability and she, as another mother and someone treating the disease, told me I had enough on my plate. She was absolutely damn right. Being chronically ill is a battle. It’s a struggle to get by on disability but sometimes you have to put your health first. Don’t ever let anyone make you feel guilty for knowing you are too sick to work but look capable of it. Not everyone gets it and sometimes it’s a surprise to us who won’t. Not true: I want to “ride the system.” The system is there for a reason: to help people like me. 14. Not Every Day Is the Same Every day with my illnesses is different and in probably some way difficult. The whirlwind of chronic illness is already hell to go through. Not true: I am a “flake.” 15. I Need Time I need time for my body to heal, adjust, decline. I am on a new journey and a new path in life, a little too early. But I have not lost all hope. We want to hear your story. Become a Mighty contributor here.

Jamie Jasinski

Grieving the Person You Were Before Chronic Illness

Four years ago, I went to my doctor complaining of excessive tiredness and having so much pain in my hands that I couldn’t squeeze my shampoo bottle while showering. Four years ago, I received a call telling me I needed to see a rheumatologist right away because my blood work came back extremely abnormal in the autoimmune area. I can remember the exact emotions I felt in that moment on the phone and how scared I was, and I can remember the fear I felt the day upon receiving my diagnoses. While I knew that rheumatoid arthritis and Sjögren’s were bad, I didn’t know that they would be life-altering. Each day, I find my mind going back to the same thing. I keep wondering why, after all of this time, I still am in mourning for my pre-sick self. Maybe I’m sad because I never got to say goodbye to who I used to be; I was so happy and had goals I wanted to achieve. Just a year or so before, I had challenged myself to run, and I came to find that running made me feel at my best and was a form of therapy for myself. As if in an instant, any happiness drained itself from my body and my running came to a halt. I also quit my job because I couldn’t handle the stress and pain my body was being put through and I had severe depression weighing me down and telling me I needed to choose myself or possibly not be here anymore. Once I couldn’t work anymore, I felt so disappointed in myself and to this day, I want so badly to contribute to society. I want to not wake up each day thinking that my life lacks purpose. To say I had hopes and dreams is an understatement. I saw a future filled with traveling and finding my life’s purpose. Instead, I lost my happiness from depression, and any ounce of pride I ever felt inside had left me. When your thoughts switch from thinking about one day buying a house with your significant other to just wanting to wake up one day and feel a little less pain, it makes you realize that you just really needed a warning that this was to come so you could have been more prepared. With the help of a therapist, I have been through the cycle of grieving and accepting my chronic illnesses multiple times, but I don’t know that I’ll ever be completely OK with my situation. I’ve actually come to a point where I don’t even tell people anymore how I’m actually feeling when they ask because I feel like a broken record and a broken soul that can never be fixed. I have accepted that no matter how many times you try to tell others what you are feeling and experiencing, they may never truly understand. You may lose important people in your life as you have to say “no” to many outings, but those who honestly are sympathetic to your situation will stick around. While I was told I’d have this forever, I did think that with medicine, I’d be back to my normal self eventually. Maybe I was naive to think that. I, instead, seemed to have more symptoms as time went on. Just yesterday, I found myself saying out loud that I felt like I needed to be in the hospital hooked up to an IV because I couldn’t handle the pain anymore. This statement was coming from someone who is absolutely petrified of hospitals. The pain ranges from my fingers to my elbows, to my neck, hips, knees, and ankles, and I turn into a child not knowing how to help myself. I try so often to think of how I can explain the type of fatigue I experience because it’s probably one of the hardest components of this. I try to explain to my husband that I’ll be going through my day and all of sudden, fatigue hits me. It feels as though if I don’t lie down at the moment that I’m going to collapse. It feels like the time in your life when you have felt most drained and energy deprived, but it happens multiple times a day and lasts two to three hours each time. No matter how much I rest, I still feel like I haven’t slept in days. Since I never was able to say farewell to the me before I got sick, I am taking this moment to do so now, and hoping that anyone else who has experienced similar feelings and situations will be brave enough to do this one day too. If I have discovered anything positive about myself throughout this journey, it’s that writing has been the best outlet for me in coping. I’ve just been told that my body will never be the same again, so I wanted to say goodbye to you as I await the arrival of this new body. You gave me the privilege of being left-handed and being artsy since I was so young; you gave me the rhythm and moves that helped me find a love of dance that lasted me 10 years. You gave me the courage to go on stage and dance while my family and friends sat there to watch and support me. You sent those smiles to my face that others would often tell me made their day; you made me a genuinely happy person that would never allow the bad things in life to take over. You gave me the ability to take up running at the age of 26, and you showed me that if you really put your mind to it, you can achieve things you didn’t think you could do. You stayed with me while I began a weight loss journey and achieved what I set out to do. You gave me countless miles of walking around and exploring life like one should while growing up. I don’t think I gave you enough credit at the time, but you managed to keep going on the days when you barely had the energy to do so. You got through going to college full-time, while also working 30 hours a week and trying to make time for my family life and also a social life. You won’t be taken for granted and will be remembered and appreciated for the rest of my life. I will miss your energy. I will long for the days of being pain-free and being able to walk around with no issues. I will miss our shopping trips, as they will be few and far between soon. I will miss vacations where I didn’t have to worry about planning around taking breaks and rests throughout the day. I will miss a body free of medication in order to function. Most of all, I will miss the feeling of being me the most. My new body will be different and not the one I have known since I was born. I will still be me inside, but I’ll never really feel the same again. Thank you for the time I was able to have you.

Community Voices

How do you know if you're overdoing it?

Are there any tell tale signs? I'm having a large pain flare which is likely from overdoing it this weekend...but I didn't even really do that much. It's very frustrating #ChronicPain #flare #ChronicIllness

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Eileen Davidson

What It's Like to Be a Single Mom With Rheumatoid Arthritis

What is it like when constant unrelenting fatigue and pain consume your world? Making every aspect of your life a consistent struggle to maintain some quality of life requiring hours of seemingly selfish but crucial self-care? All while trying to be a caring and nurturing mother who is trying with about every ounce of energy inside her to not mess her kid up through our lives with adversity. When I tell someone about my illness, I can expect them to respond with how I am “too young” or I do not “look sick,” I look so well. Or they’ll ask me if I’ve tried adding turmeric to my diet or gone vegan. I often hear from people that they can’t imagine what it is like to go through chronic illness and be a single parent to a rather young child. How do I do it? How do I do so much? I take it day by day, week by week and month by month. I wasn’t given a choice. I am the one in four women in Canada who live with a form of arthritis. The most common form of arthritis is osteoarthritis, which is often associated with old age or injury. Rheumatoid arthritis however is an autoimmune disease which affects 1 percent of the population and much more than just your joints. Because RA is an autoimmune disease, the immune system mistakenly attacks the synovium which is a fluid that lubricates the joints making it thicken. This creates inflammation resulting in pain, fatigue, mobility issues and eventually can result in deformity of the joints. It can damage cartilage, the elastic tissue that covers the ends of bones in a joint, as well as the bones themselves. Over time, there is loss of cartilage, and the joint spacing between bones can become smaller. Joints can become loose, unstable, painful and lose their mobility. Because RA also can affect body systems, such as the cardiovascular or respiratory systems, it is called a systemic disease. Systemic means “entire body.” It’s not your grandmother’s arthritis. So what is it like to live with an incurable disease with misconceptions behind it veiled in an invisible cloak? While looking like a healthy and vibrant 32-year-old mother? It’s a struggle fueled by love… and coffee. I didn’t imagine this would be my life at only 29 but if there is anything I have learned, it’s that things rarely go as planned. Before my diagnosis I didn’t have much of a plan, now I plan out my daily activities in a list to manage motherhood with chronic fatigue, sometimes by the hour. Even still, I don’t always have days I can finish everything on my to-do list, even if it was as simple as shower, take out the garbage, do the dishes and laundry. Chronic fatigue has made me a chronic procrastinator. I am grateful for the moments I notice my son gaining his own independence as he grows. I despise when people say to me to be grateful for now, since time goes by fast; it’s nothing like that. The guilt of a chronically ill single mother is tremendous. Do I want to be excited for my only child growing up fast? No, I want to savor every moment, but my every moment is quite different than the average person. My energy doesn’t match a normal 32-year-old mother, even if she works full-time. Fatigue and tired are different. The vicious cycle of chronic illness often has no warning signs. My son was still in a stroller and diapers when I was diagnosed. I remember how difficult and painful lifting or unhooking strollers was with arthritic hand… But I remember how I used to call it my walker and it somehow made things easier. I remember how I loved it because I could put anything that needed to be carried on it. I could pile bags of groceries on it. My shoulders didn’t know how much I would miss that as my son grew out of the stroller age and as my arthritis progresses. It’s now him saying he wishes Daddy was around so he could carry him; he knows Mommy can’t because of her arthritis. I fear him catching a cold from his classmates because I’ll probably get it worse off than him with my compromised immune system. Disease management has made me very organized. I often need to plan out weekly chores accordingly. One day for groceries, a day for laundry, a day for cleaning, a day for doctor appointments, tests or treatments, time for the gym. I often can only handle one big activity in a day in order for me to save my energy for self-care and my son. That could be as simple as a trip to the grocery store or exercising at the gym. It was difficult trying to figure that one out. Weekends before used to be for going out to concerts, parties, dates, hikes, dinner parties, whatever I wanted to do, I could do it. I had the friends around, I could stay up late, I could drink, I had the money, I had the ability. Now I spend all my money on my health, my son and my constantly rising bills. I have to budget precisely when living on disability payments. Now weekends are for a long period of rest to charge my inner battery. Self-care takes up most of my free time because if I skip it then I am skipping the crucial impact it has on my health which I need to take to fight my chronic illness and be the mother I need to be. I yearn for fun but also know the consequences of fun can be a day or two of debilitating chronic pain and fatigue. Even if I have time to go out, it’s energy I have to sacrifice for everything else I have to do during the week. Being a chronically ill single mother is being chronically busy because living with rheumatoid arthritis is a 24/7 battle. Areas of Inner Struggle My mind and emotions are constantly toying with me, often with moments of guilt, stress and loneliness. Living with chronic fatigue has become a sentence of feeling chronically guilty I am not doing enough, I am not enough. Yet I am enough. Depression is often a symptom with rheumatoid arthritis. Living with an invisible illness comes with a heavy dose of judgment from those who don’t understand the drastic effect arthritis has on someone’s life, especially at a younger age. It makes it difficult to create friendships or relationships with others – not many want to be with the “sick girl.” My appearance and my tattoos gather me a lot of attention but once I share that I am chronically ill that attention can fade away. It’s lonely. Most of my friends now are also chronically ill. Becoming sick at such a young age and experiencing my disease manipulate my body as its cells attack itself quite rapidly tormented my self-worth. Chronic pain and fatigue has produced some dark thoughts and actions in me. I’ve succumbed to my rock bottom but I knew the only one who could get me out of it was myself and I had to because I was also the one to look after my son. Rheumatoid arthritis taught me how to persevere. It taught me to admire my strengths and resilience. It made me who I am today, most importantly a good mother.