A U.S. based, non-profit organization providing support, resources, edification and advocacy for patients affected by the many forms of Dysautonomia and related conditions such as Connective Tissue Disorders, Mast Cell Activation Disorders, Chiari Malformation and Gastric Motility Disorders.
April is Occupational Therapy Appreciation month, so thank you to all of the occupational therapists out there who have made a difference in their patients’ lives. For those who may not know, occupational therapists (OT) help with braces and splints, with executive functioning, and with helping their patients perform tasks without strain or injury. They even help patients regain skills they may have lost due to a stroke, surgery, accident or other event. In short, they help many of us live our best lives by remaining as functional and independent as possible.
I never thought that an occupational therapist would be much help to me. In truth, I didn’t really know what they did, and I didn’t think I had “those kinds of problems.” When I was 18, I went to a pediatric pain rehabilitation center for my chronic regional pain syndrome (CRPS). There, an OT was in charge of our desensitization. We started off with cotton balls and ended up with children’s toys that induced lego-like agony. Needless to say, this was not my favorite thing to do, and she was not my favorite person. But my distaste was not because of who she was as a person or even as an OT. It was the amount of pain I had to go through in her company. Unfortunately for her, it was not as easy to make OT as fun as physical therapy. At least PT involved games! For me, the end goal of OT was to be able to wear jeans. I had been wearing flowing pajama bottoms, shorts, and wide leg yoga pants for months, because I couldn’t stand to have anything touch my legs. In a few months, I was going away to college and wanted to be able to wear normal pants: khakis, corduroys, and of course, jeans. The increasing difficulty of the desensitization was helpful in getting me to that level.
Only recently have I seen an OT again. Following my EDS diagnosis, I realized my fingers were very bendy. I wondered if that was responsible for some of my hand and finger pain, particularly after hours of knitting or typing. I purchased inexpensive plastic ring splints and found that they helped, but I wanted to try silver ring splints to see if they were more comfortable (especially on my thumbs). The OT was not only helpful with that, but she also asked what I did for fun and work to see where she could offer additional support. I told her about all of the work I do on the computer, and how sometimes it hurts my wrist and thumb as the base is hypermobile. She suggested a metal thumb brace. It has taken some getting used to, and I don’t always wear it. It is a great help, however, and I can still wear my brace and thumb splint at the same time.
I also talked about how often I knit. She wanted to know how I typically knit, and I demonstrated how I scrunch up so I could rest my elbows/forearms on my thighs. I did this, it seems, because I needed the support. So she asked me to find a pillow or some other device that would give me the support I needed while sitting properly. This would allow me to knit or work as frequently and for as long as I want (mostly) without fear of injury. Of course, rest is still important, but I am in a better position to prevent issues now than I was before.
That is what occupational therapists do. They show us how to do things in a way that will not cause further pain and suffering. They teach us to safely live our lives, enjoy activities and complete our chores. Having these tools in our toolboxes makes our existence much easier. The truth is that when you get a new pain or a chronic illness, adaptation is necessary. There is a learning curve in figuring out how to do things in the body that you have now, and often you need help. OTs make that transition easier by providing the skills and the tools that we need for us to thrive as independently as possible.
When I first started learning about Ehlers-Danlos Syndrome (EDS), the issue of “tightness” came up. Some of us with EDS feel as though our muscles are tight. Our faulty collagen makes the ligaments and tendons too weak to hold the bones and joints together properly. To compensate, the muscles have to work even harder, which causes the muscles to spasm, which in turn makes them feel tight.
To combat the tightness, we use massages, muscle work, and stretching to relieve the pain. This can make the muscles strong enough to hold the joints together so that they don’t have to work so hard. Sometimes, though, these remedies can cause greater discomfort. Practitioners must be careful not to relax the muscles too much as this is more of a hindrance than a help. (Muldowney, 2015).
But what does all of this have to do with pelvic pain? The hard truth is that collagen is everywhere in the human body. While there is more collagen in some places than others, it is nevertheless a fundamental part of human anatomy. This means that it affects every part of the entire body to some extent. For many female EDS patients, this includes the pelvic floor weakness. Initially, I thought of the pelvic floor encompassed only the vagina, but it is connected to and involved with so much more. Anyone who has ever had pelvic pain will tell you how much it affects movement and bodily functions. The pelvic floor encompasses the abdominal muscles, and your crotch connects to your legs. As a result, walking, sitting, and lying down can be painful.
Pain medications can ease discomfort, but physical therapy is the most common solution. It does work, but it can be difficult to discuss private parts. Everyone has pelvic floor muscles, though, and strengthening the pelvic floor is the key. Physical therapists will work with the muscles of the abdomen and/or thighs to help the muscles to relax. Hormone therapies can also make a difference depending on the symptoms. Desensitization exercises can help as well. Gynecologists can also uncover sources of irritation such as laundry detergent, fabric softener, soap or body wash, lotion, and douching.
My pelvic pain began years ago, but it finally became unbearable last spring. I had an appointment with the first gynecologist who would listen, and she referred me to a pelvic physical therapist. She spoke to me honestly but compassionately. She said that it had taken me years to get to this level of pain and it was going to take time and dedication to lessen it. My pelvic PT could not say what my baseline would be but that we would reach my goals together. So far, it has been immensely difficult. I have experienced setbacks, then improvements, then flares all over again. Much like how my regular physical therapy has gone. Since I have not been making enough progress, I have had a botox injection into the muscles of my pelvic floor. While this sounded extreme and bizarre to me, it can calm those muscles so that physical therapy can progress without interference. It has worked wonderfully so far, and I hope that continues, as we all need all the help that we can get!
Muldowney, K. (2015). Living life to the fullest with Ehlers-Danlos syndrome: A guide for a person living with EDS to achieve a better quality of life. Denver, CO: Outskirts Press.
Yael Gazit,. Giris Jacob, and Rodney Grahame. Ehlers–Danlos Syndrome—Hypermobility Type: A Much Neglected Multisystemic Disorder. 2016 Oct; 7(4): e0034. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5101008/
Tips and Encouragement for New or Returning Exercisers of All Health Statuses
Note: Everybody who reads this should talk to their medical practitioner before they get started with an exercise routine. This article is written both for people with typical health and those without, but the suggestions are easier to integrate into your life safely if you don’t have as many medical quirks.
I mention some chronic conditions and how that can affect the kind of exercises you do, like fibromyalgia, chronic fatigue syndrome (CFS/ME), postural orthostatic tachycardia syndrome (POTS), general hypermobility in your joints, or something more specific like Ehlers Danlos syndrome. And if you’re a wheelchair user, here are some exercises that are specific to you! I’m sorry that I don’t write about you specifically, but I hope you will find encouragement here, too.
So maybe your new year’s resolutions include getting fitter. Maybe you want to exercise more than you have been, and you’re wondering how to begin wisely. There are tons of benefits of exercising that have nothing to do with weight loss!
First of all, have you set S.M.A.R.T.O. goals? If you haven’t exercised at all recently, attempting 60 minutes of cardio right away isn’t going to bring you success. Similarly, if you just say “I want to exercise more,” how does that help you? What does it look like to meet that goal and to incrementally raise it over time? What kinds of exercise do you want to do? There’s cardio, weight-lifting, balance, and flexibility, to name a few. I’ll talk a little bit about cardio and weight-lifting, but generally, your goals should be specific, measurable, achievable, relevant, time-sensitive, and aware of obstacles that could get in your way.
Let’s think about goals that are achievable, relevant, and aware of obstacles (specifically, chronic illnesses that could impede you). Of all the factors, choosing a goal that is achievable may be the most important one of all.
If you have the money, get a session or two with a personal trainer so you know where you’re starting and where you might want to go.Start small in order to feel like you can go somewhere. If it’s 3-10 minutes of cardio (with a target of 150-160 bpm, depending on your age), start there. If it’s 5 reps of the smallest hand weights, start there, You don’t need to do arm and leg exercises on the same day. You build up. If you overdo it, you'll be in pain and get discouraged.
Where do you have the most fun and feel the best about yourself?
Exercising on your own, with a friend, or with a group?Indoors or outdoors?
What do you have the money for?
A gym with classes? A gym without? No gym membership?No gym membership? No problem. Here are 100 free ways to exercise.
What will actually make you feel like exercising? Because that’s what’s important. It doesn’t matter if your friend likes cycling and you hate it. Do something you actually like.
Hiking? Taking a walking path?Catching up on Netflix or listening to an audio book or a great playlist while doing the elliptical or treadmill?
When do you actually have the time in the day to exercise?Morning? During your lunch break? Afternoon? Evening? Just don’t exercise within 3 hours of bed time, because you’ll be a bit wired afterward.
Aware of obstacles.
What do you consider embarrassing? You’ll probably be sweaty, and maybe you’ll look uncoordinated and feel silly. But you’ll still be accomplishing your goals, so thank yourself and be proud of yourself, too. A little sweat (okay, a lot of sweat) doesn’t take away from a killer exercise-inspired, goal-achieving smile.What do you consider discouraging? If you’re trying to look like people in magazines or stock photos, you probably won’t. I don’t either, and that’s okay. Who said you had to look like them, anyway? If you start with fitness goals that are too lofty, you’re likely to be discouraged. Make your goals S.M.A.R.T.O.!
What limitations does your body bring to the table? There are lots of products that help with wonky symptoms, but some health conditions can still affect your exercise. Know your body. Personal trainers aren’t familiar with these conditions, so you need to talk to a medical practitioner. They might even write you a script to see a physical therapist or a physiatrist, a kind of doctor trained in healthy movement. Take them up on it. I cannot tell you how helpful that has been for me. Now I have a binder of exercises that are safe and helpful, rather than a fitness regime that actually hurts some of my muscles. And remember, there's a difference between pain and soreness. Chronic Illnesses.
Fibro: You must understand the difference between pain and soreness. You must set attainable goals to make sure that you don’t crash the next day. If you exercise within a reasonable range, you’ll get energy; if you don’t, you’ll lose it.Chronic fatigue syndrome: Since you have post-exertional malaise, it’s going to be extra important for you to set attainable goals and see how you do. Just as with fibro, if you exercise within a reasonable range, you’ll get energy; if you don’t, you’ll lose it. Even three or five minutes makes a difference.Postural orthostatic tachycardia syndrome: You may think you can’t exercise, but guess what? You can work up to it. Here’s how to safely do that. Best news ever.Hypermobility or Ehlers Danlos Syndrome: For the love of God, do not do yoga. Just don’t, unless someone extremely well-versed in this area tells you that you would benefit. Here's an article about how to stretch in a safe, beneficial way. Since you’re likely to have POTS, make sure to look at my POTS exercise article as well.Depression and other mood disorders: Depression can make you feel like an especially crappy person when you miss a day or fail to meet your goals: Assess your thoughts and compare them to reality. Are you a bad person because you stepped away for a little bit? No. Will you feel better if you go back? Yes. Go.
Have fun, my friend. You’re going to experience so many benefits if you do this carefully: Better mental health, increased energy, a boost in your self-confidence, and possibly even a longer life. It won’t be perfect. There will be days that you overdo it and days when you don’t feel well and do less or even nothing at all. The important thing is that you do it. Not every single day, and not the way everyone else is doing it, but the way you do it that makes you feel your best. Your mountain awaits – get on your way!
If you want to read more of Emily's writing visit her blog here
Anderson, C. (2015, October 27). 45 Convincing Reasons to Exercise and Eat Right That Aren't Weight Loss. Retrieved March 09, 2019, from https://greatist.com/grow/reasons-exercise-and-eat-right
Anderson, E. (2017, May 30). Lifestyle Accommodations and Health Products That Make My Life More Manageable: Part 2. Retrieved March 09, 2019, from https://illness-to-wellness.com/2017/05/30/products-part-2/
Arnold, E. (2016, November 05). Managing the Tricky Symptoms of Postural Orthostatic Tachycardia Syndrome (POTS). Retrieved March 09, 2019, from https://illness-to-wellness.com/2016/11/05/managing-pots/
Arnold, E. (2017, December 28). Preparing for the New Year: Pick Five. Retrieved March 09, 2019, from https://illness-to-wellness.com/2017/12/28/preparing-for-the-new-year-pick-5/
Engel, C. (2017, December 05). Breaking Down the Barriers to Exercising with EDS and Hypermobility. Retrieved March 09, 2019, from https://medium.com/@chelseyengel/breaking-down-the-barriers-to-exercising-with-eds-and-hypermobility-692081adc462
Engel, C. (2017, December 05). Breaking Down the Barriers to Exercising with EDS and Hypermobility. Retrieved March 09, 2019, from https://medium.com/@chelseyengel/breaking-down-the-barriers-to-exercising-with-eds-and-hypermobility-692081adc462
Exercise intensity: How to measure it. (2018, June 12). Retrieved March 09, 2019, from https://www.mayoclinic.org/healthy-lifestyle/fitness/in-depth/exercise-intensity/art-20046887?pg=2
How To: Exercises from Your Wheelchair. (n.d.). Retrieved March 09, 2019, from https://101mobility.com/blog/wheelchair-exercises/
Norazman, A. (n.d.). 8 Not-So-Obvious Signs You’ve Been Working Out Too Hard. Retrieved March 09, 2019, from https://www.lifehack.org/articles/lifestyle/8-not-obvious-signs-youve-been-working-out-too-hard.html
Soreness vs Pain: What's the Difference? (n.d.). Retrieved March 09, 2019, from https://www.moveforwardpt.com/Resources/Detail/soreness-vs-pain-whats-difference
Truman, A. (n.d.). 100 Free (or Cheap) Ways to Exercise. Retrieved March 09, 2019, from http://www.brokeandhealthy.com/100-free-or-cheap-ways-to-exercise
When we call disability accommodations “special needs,” it makes them sound optional, burdensome, not worth the effort, or impossible without special training. Here’s a thought: special needs are actually human needs. Let’s create a norm. Let’s embrace it by exceeding these needs rather than just trying (and sometimes failing) to meet basic accessibility standards.
You may be wondering why would someone would pursue higher education if they need extra support and accommodations to get it done. It’s because we have gifts to share.
This is an edited and shortened version of a letter that I wrote to the diversity committee at my school about the feelings and experiences that can result from taking up the space I deserve:
“In my educational journey, I was hoping to experience a baseline of trust and grace. Instead, I have often had to build it from the bottom up. I’m sad that professors often stick to black-and-white, hard-and-fast rules and deadlines rather than considering the humanity, needs, and hopes of the students with whom they work. Ours are not “special” needs; they are accommodations, and making room for everybody shouldn’t be special. It should be a baseline that someday we will no longer need to applaud, because of course we want to make sure there’s a space for everybody at the table.
Many of my professors are great. However, there are some that make me feel isolated and uncomfortable. They act as if my doctor-prescribed and necessary accommodations are disturbing to others and them. Instead of people seeing that this helps level the playing field, I’ve experienced dirty looks when, for example, I type notes on a computer to alleviate hand pain in a computer-free classroom. Some professors also tell me that getting short extensions on assignments during a symptom flare makes it “unfair” to other students – students who don’t face the same circumstances that I do.
Then, at the end of one semester, I was experiencing a particularly rough period of an illness, so I asked for a 24-hour extension on a final. Rather than receiving the extension, my professor suggested that a leave of absence was more appropriate. I had two finals left before I’d be done with an entire semester’s worth of work, and people who barely knew me thought that because I needed accommodations, I couldn’t make it through school. It was insulting to say the least. I took those finals knowing that I had to prove myself, and that made them all the more difficult.
I feel the same way when I have to hand in an assignment slightly late or show up slightly late to class because of sleep troubles. When a professor explicitly says that they hate late assignments or tardiness, it makes me feel like I’ll never measure up, and that maybe I shouldn’t even bother trying. This thought pattern is ridiculous – and I can almost always see that – but when I’m in the midst of feeling that doubt and fear, it’s hard to remember.
I think professors need to know that students with disability accommodations are not exaggerating when they say they need help. We’ve been socialized to take up as little space as possible. We hate showing what others perceive as weakness, and we are often hesitant to ask for help, because it’s hard to know if we’ll need help again in the future. We don’t want to exhaust professors’ grace and patience with us. It’s easy to think that by the end of the semester, our professors will be frustrated with us, and it often feels to be the case. Our circumstances are unpredictable. I can’t look at my calendar and say, “The week of February 19, I’ll need extensions, because I’ll be bed-ridden by pain.” So we know to only ask for help if we desperately need it. With this in mind, believe us when we do ask. Trust that we know ourselves well enough to know if something is too much for us. Don’t make that assumption for us.
Professors and fellow classmates, please see that my needs aren’t special. They’re real and valid, just like yours. Take time to learn more about disability and working with disabled people, because just like those in other minority groups, our voices matter. If you don’t listen to our voices, it’s hard to imagine us continuing to show up. If we stop showing up, it’s not only us who lose out, but you as well.
It is God who put a call on my life, and no human can stop me. And nobody at an institution that shapes a sense of calling and vocation should make me doubt that.”
To read more of Emily's writing visit her blog here
The opinions expressed here are that of the authors and are not that of DSN or its affiliates.
Repa, B. K. (2019). Your Right to a Reasonable Accommodation Under the Americans with Disabilities Act (ADA). Retrieved March 10, 2019, from https://www.nolo.com/legal-encyclopedia/free-books/employee-rights-book/chapter7-8.html
Aslan fetches and carries, opens doors and drawers, pulls laundry out of the washer and dryer, and performs many other vital tasks. One of his most important roles, though, is to identify me as disabled, an identity I hesitated to claim until he was by my side. He is my canine wingman. We’ve been a team since Aslan’s breeder gave me his leash six years ago, among members of Canine Companions for Independence.
With an often-invisible disability, the pressure to be “normal” is enormous. From rolled eyes, sighs, and elbows in the ribs when my slow pace impeded others’ progress through the grocery store to the assumption that I could walk reasonable distances, up and down stairs, carry packages, bend over and pick things up from the ground or sit without harm on stools or counter level chairs, people expected me to do things that I couldn’t every time I stepped out of the relatively safe bubble of my home.
The volume and variety of normal activities that injure me is impossible for most people to comprehend. Before Aslan, I tried to fake “normal” and meet expectations, no matter how much it cost me. “Coming out” as disabled has been a slow process. Taking Aslan’s leash made it easier.
I didn’t believe I deserved to call myself “disabled;” I believed that the term was reserved for people whose problems were more severe. Although I had several autoimmune illnesses, they didn’t explain my injuries, or why my heart rate and rhythm were so unstable, or why I lacked endurance. I was nearly 50, and had given up on ever finding an answer, when an unrelated rheumatologist visit offered a clue.
The rheumatologist told me I had a hereditary disorder of connective tissue, and that acting like a normal person had only hurt me. Visits to two more specialists confirmed the diagnosis as Classical Ehlers-Danlos Syndrome (cEDS), a disorder that affects collagen, a protein that the body uses to build tendons, ligaments, muscles, fascia, intestines, blood vessels, nerves and skin. In cEDS, tendons and ligaments break down with normal stress, there is multiple body systems malfunction, and it causes reduced stamina and endurance.
We EDSers tend to appear healthy and strong. That’s all most people see when they look at me — until I step out with my service dog. Acknowledging disability means that I can ask for accommodations when structural and social barriers prevent me from participation. Aslan is a visible sign that makes “asking” easier so I that I can accomplish more than I could when I pretended to be normal.
The shift in identity goes deeper, though. My parents joked that when I was born, the doctor slapped me to get me breathing — and I slapped him right back and told him to knock it off. I was born ready to react and take on the world.
My instinct was to be like the terriers I used to have as pets, who hurled themselves at every obstacle, chased down every ball, dug up every bone, yapping all the while, throwing caution to the wind. I followed that instinct, and it was outwardly successful, at least for awhile, until my weak EDS body fell apart. Then, I had to learn to be less fierce and to accept that I am fragile. I had to learn how to ask for help.
My big, sweet, impeccably trained Aslan approaches life differently than my terriers did. I aspire to be more like him. He waits. He responds with quiet authority instead of reacting with harsh barks. He works enthusiastically, but without undue urgency or stress. He asks for help when he needs it. Aslan accepts the love that people heap on him and returns it tenfold. He appreciates a good treat, a sunny day, a nice run beside my power chair, but waits patiently through the cold, sunless winter for spring to come again. He trusts that things will turn out all right.
DSN supports our members with service dogs or those who are in the process of training one. We offer service dog grants each year. Check out the application here
The opinions expressed here are the authors and not that of DSN or its affiliates.
I remember being young and feeling so confident in my body that I would dance around the room carelessly. I would watch Dancing With the Stars with my sister, and we did our best to recreate their advanced routines. I remember feeling so smart, because I could read for hours on end and remember all of it. I remember taking the microphone at a school sale and walking around doing my best to make people laugh and sell some cookies without caring what anyone thought. I remember when I had no idea I wasn’t invincible.
I will never forget when that all went away. That morning, I woke up, and my hands were shaking so badly I couldn’t straighten my hair. The next morning, I couldn’t move my right arm. I remember crawling out of my cousin’s house on my hands and knees trying to escape the feeling that was now my reality. I was screaming on the lawn for help, and I fainted from pain as my family held me and prayed over me in hopes a God I’ll never believe in would take back my pain. I remember begging the school to call my mom instead of an ambulance, because my hands and lips were blue and purple. I remember when everything I knew was gone. People stopped telling me “You’ll go so far.”Instead, they started asking me, “Please stay.”
It was never easy to adjust to a new me that I’d never asked for. I had to relearn my body and what I could and couldn’t do. I was unpredictable. I had been so strong, and now I couldn’t get out of my bed without wailing. It killed me to lay in bed thinking of what I used to do and fearing I’ll never be able to do them again. I missed feeling careless, confident, hopeful and curious. Every once in a while, I mourn the person I was. Remembering everything I was once capable of, and everything I had to go through just to live, will always be a struggle we spoonies have to endure. Although it’s hard to remember, I never want to forget. It’s given me a goal, not to become who I was, but to create a new me.
I may be sick, and I may be in pain, but I am growing. I have learned from my “new” body. I have taken control of it. Although the road is hard and unsteady even still, I’m thankful I had to do it. One experience few people go through in life is having to make the decision of living or existing. For a long time, I chose to exist, because I feared my new self. But I remember the day I chose to live. I remember the first time I could write with my right arm again. I remember the day I walked through the airport without needing a wheelchair. I remember seeing my mom cry as she watched me play volleyball with my little sister for the first time in years. I remember the day I got to go home to my family and restart. I may mourn who I used to be, but I appreciate who I am now. I may struggle with my chronic illnesses, but it is not all I am. And I am perfectly imperfect - just the way I am.
Follow Justise on her Blog if you enjoyed her work.
The opinions expressed in the republishing of blogs are not the opinion of DSN or its affiliates.
Our very own Artist of the Month has won an award with the Rare Artist Contest. This is a very exciting and prestigious award and we are fortunate to have Missy as a DSN Member. Next week at Rare Disease Week, there is going to be a reception for the artists and Missy will be presented with the award.
Dysautonomia Support Network loves to support its members in their creative endeavors and since the launch of our Artist's Club we have been able to see some amazing art posted in our club. Melissa has an unique way of creating and it is our honor to feature her as our January Artist of the Month. We hope you enjoy learning more about Melissa as we did!
What drew you to art? When did you start?
Like many people, I have always dabbled in art. However, I did not start painting in earnest until I became disabled. My circulatory system will support me standing up for about 5 minutes at a time and I can sit up for between 1 - 3 hours (depending upon whether I can elevate my feet). So I spend the majority of my waking hours having to lie down. I initially began painting as a way to pass the long hours of being forced to lie down due to my autonomic nervous system malfunctioning. However, it was so enjoyable that it soon took on a life of its own. Instead of feeling frustrated that I had to stop what I was doing and lie down, my attitude shifted to “Okay, now it’s time to paint for awhile. This will be fun!”. It has helped me to adapt in a positive way to my physical mobility issues.
What mediums do you work with? How would you describe your subject matter? What themes seem to occur/reoccur in your work?
I paint on a touchscreen tablet using conductive paint brushes and styluses. This was simply a pragmatic decision. I enjoy using watercolors, oils, acrylics, and pastels. However, I paint while lying down. I needed a way to paint where I didn’t have to worry about spilling wet paint on my sofa or bed.
I didn’t realize it at first, but a recurring theme in my artwork is weightlessness. This comes from my daily water therapy. Like many people with dysautonomia, I am limited in my ability to stand up on land but have no such limits standing chest deep in the low gravity environment of water. I get in water every day to help my circulation, strengthen my muscles, and assist my lymphatic system. I cannot do aerobic activities even in water so I swim very slowly, partly floating. Water is my physical freedom and I’m always happy while in it. If you look closely at my artwork, you’ll notice that in most of it there is a person, animal, or object floating or moving about weightlessly.
Tell me about your piece. Is there something in particular that you wish to convey with this artwork or perhaps emotions or ideas that you running through your head at the time?
Both “Elizabeth’s Moonbeams” and “Cloud Burst” are the result of my daily water therapy and convey the theme of “weightlessness”. One evening I was in the water admiring how the pool lights bounced around within and outside of the water. The idea came to me of doing underwater photography of people. My first underwater model was one of my daughters. She is the model in both of these art pieces. In “Elizabeth’s Moonbeams” she was actually sitting on the floor of the pool while I photographed her. I later digitally painted upon the image to make it appear she was floating in clouds. In “Cloud Burst” she was floating on top of the water’s surface. I later painted upon the image to make it appear as though she were bursting through colorful clouds. By the way, somebody has to really, really like you to pose for photos underwater for you!
What does art do for you?
I believe we all need dreams and goals. It’s part of the human condition. It’s also true that working with your hands can be therapeutic (I’ve read studies indicating it releases certain brain chemicals that are conducive to happiness). Speaking as a disabled individual with impaired mobility, I believe that finding something I can do which involves working with my hands and which provides me with dreams and goals is very beneficial. In my case, I’ve been pleasantly surprised at the number of people asking to buy my art. I’m actually about to go “live” selling it online in November. I don’t know how much will sell (and I expect sales to be modest) but even attempting to do it is providing me with dreams and goals.
When people ask you what you do how do you respond?
When people barely know you, I don’t feel like it’s the time and place to start a conversation with them about your medical issues. So I just say “I’m retired”. I actually was only six years away from my planned retirement date when my body wouldn’t allow me to work anymore, so people usually accept that. However, on occasion someone will comment to me that I’m "too young to be retired". When they do, I simply say “Medical issues forced me to retire earlier than I’d planned” and I change the subject. That said, who knows? If selling my art becomes a regular part time thing, maybe I’ll start responding “I’m an artist”. That would be nice.
What inspires you? What are you currently reading, listening to or looking at to fuel your work?
I love listening to people talk about their life experiences, especially those who on the surface seem different from me. If you really listen to others, it seems obvious that we have far more in common with one another than we have differences. I enjoy listening to people in person and enjoy watching well crafted movie dialogue as well. A well written movie oftentimes has a lot of well thought out dialogue concerning the human condition which makes you think. I often watch/listen to movies while doing my water therapy and while lying down painting.
What do you think the biggest challenges to creating art are? Do you have one that is particularly troublesome for you?
To me the biggest challenge is to make yourself try something new you’ve never tried before. When people praise you over and over for a certain type of artwork, it’s easier to want to stay within that comfort zone rather than try something at which you may fail. However, if we don’t try new things we won’t know new things.
Do you have a piece that you are most proud of?
So far “Elizabeth’s Moonbeams” is my favorite. I’m sure the fact that she’s my daughter and it looks just like her biases me. I love my daughters SO much! (Fyi, I keep pestering my other lovely daughter to get in the water for me for a photo shoot. She lives a nine hour drive away so it’s harder to get together, but one of these days it’ll happen!)
What do you want your work to do for others?
Sometimes Life’s challenges can feel like doors that have closed on you. I will feel like my art has contributed something positive to the World if it helps at least one person who is facing one or more of Life's “closed doors” to actively seek out an Open Door. I believe we human beings tend to find that which we seek out.
Do you have a motto?
I do! It was, in fact, my great grandmother Melissa’s motto: “Things turn out for the best for those who make the best of how things turn out."
What three things never fail to bring you pleasure?
My grandchildren, fresh flowers, and chocolate. (I could make a longer list but you limited it to three.)
Is there something you are currently working on, or are excited about starting that you can tell us about?
Yes! Apparently with me it always circles back to water. I am currently experimenting artistically with dropping colored liquids into clear water and capturing photographs of that which I later paint. It creates a beautiful illusion of colorful clouds.
If you could have an art class with any artist in all of time, who would be your top 3 and why?
Edgar Degas, because I would love to learn how to paint the way he does with his ballerina tutus and backgrounds.
Maxfield Parrish, because he is my very favorite 20th Century artist and I've enjoyed studying his artwork as well as reading an article he wrote as an elderly artist about how to emulate his painting techniques and colors.
John Singer Sargent, because I would want to learn how he paints such dark, neutral backgrounds (that make the people in his foregrounds “pop”) without them looking muddy. When I try that, to me it just looks muddy.
Marriage is a challenging endeavor. You pick one person to take on life with and that includes the ups and the downs. It is easy to stand at the alter and vow before family and friends on your wedding day to love and honor – in sickness and health. It is part of the deal, but the application is much harder than just saying the words.
Sometimes it can be hard to choose love continuously when your spouse is healthy, much less sick. We all have bad habits, lapses in judgement and can lack patience. So, imagine all those character deficits being compounded by sickness! I am not referring to the common cold or occasional flu, either. Because, those have an end in sight. Most of us will gladly jump at the chance to serve our significant other by nursing them back to health with soup and cuddles. In that situation, it can be easy to choose love.
What I am referring to is the beast of chronic illness. The incurable, never ending storm that becomes your life when one in the relationship falls ill. There is pain that is so abrasive that cuddles are not possible, and it can cause a divide in the marriage.
I remember when my husband and I first started dating, we would watch movies and TV a lot together on the couch. We always were entangled in each other’s arms. If we sat apart from each other, it was probably because we were in a quarrel.
My favorite time of the day was sitting down with him and having his arm around me. As I got sicker and the pain increased, I found myself not being able to lay on one side or to lean into him as easily. Our cuddles became less and less. Of all the things I have lost to my illness, this one squeezes my heart more than anything. My husband has been present for some of the most physically and emotionally painful events of my life and he cannot do anything to fix me.
For a man, that is a tough thing to accept. It must be heartbreaking to watch the person you love be in tears from pain. I rarely considered his heartache when he lashed out in powerlessness. I only thought of it as unloving at the time, when in fact it was the opposite. Then there are the late-night emergency room visits, when he is already exhausted from working his tush off to support our family. Most of the time, I cannot drive myself. So, this falls on him.
Sleep deprivation sets in and arguments flash like a match in a pile of kindling. Then there are the surgeries, doctor’s appointments and medical costs. Every time I have a surgery, my husband is my caregiver, my driver, housekeeper and cook. He wears so many hats and that can erode a relationship and person. Then, I, as the one receiving the care, can feel very guilty. I know that he does not mind doing it, because he loves me, but I do not like to put all that on him. So, when I do feel OK, I overcompensate and overdo it! It is an ongoing cycle.
I am learning to live in compassion and understanding. I want to remember that I am not the only one struggling in this relationship and that we can turn to each other instead of against each other. This was not the way life was supposed to go. This was not what I imagined my marriage to look like. I can wholeheartedly say he probably thinks the same thing. When he met me, while I was never quite well, I was never this sick. In the last two years there have been six surgeries and so many tests and procedures that I cannot even count. He has been there through all of it. He has helped dress me, feed me, bathe me, dry my tears, pick up meds and everything else in between. I hate that I need so much help, but I am glad that I need it from him.
We are still learning what normal looks like for us, now. However, we are trying to walk towards each other. Depending on the day, he’s walking, and I am wheeling. But the important thing to remember is that we are growing in this. Life is too short to fight the person you love, when what you are really angry at is the fact that one of you is sick.
So, our date nights are not traditional. We watch movies and ignore housework. We accept that each of us needs the other in different ways. We work hard at our relationship so that frustration and resentment do not fester. We choose love in moments of despair.
My husband has this funny little dance he does when I am down because he knows that it will always draw out a giggle. When I see him weary and overworked, I bake him a pumpkin pie. I try to let him know how valued he is and that his hard work is noticed and appreciated. These are all things that should be done in a relationship without illness, however, we have to emphasis the little acts to avoid big issues getting out of control.
When I envisioned what I would be like as a wife, I pictured a perfectly kept home with dinner ready each night. I pictured laundry neatly folded and put away. I pictured vacations and outings. Letting go of the way I thought things would be has been a slow and painful process. However, we are getting there. We could choose to let my illnesses break us or we could grow closer together. I will continuously choose the latter each and every time.
Mast cell activation syndrome (MCAS) is a relatively new diagnosis. It is not a truly new disease, but doctors have only begun to recognize it in the past 10 years. Mast cells are types of blood cells that play a role in the immune system. They exist throughout the body and form the body’s first defense against foreign bodies and injuries. They release histamine and other chemical mediators when they encounter a perceived threat. Normally, these mediators help heal the body. In a person with MCAS, however, the body releases these mediators inappropriately which then has a negative effect on the body. There are a variety of triggers, but the most common are foods (both “healthy” and “unhealthy”, high or low in histamine), exercise, chemicals (natural odors, chemical odors, cleansers), fragrances and stress. Some people with MCAS are able to more easily identify their triggers, and others still don’t know all of theirs. Triggers can also change over time, often waxing and waning in severity, sometimes with no known cause. Like all disorders, MCAS covers an array of symptoms and severities, thus creating a spectrum. What these symptoms boil down to is overly sensitive mast cells (“About MCAS”).
Physicians didn’t truly identify MCAS until 2007. Unlike Mastocytosis, MCAS does not increase the number of total mast cells; it only increases their sensitivity. Some patients are only mildly inconvenienced by their symptoms while others have debilitating and life-threatening experiences. There are times when only a few parts of the body are affected, and times when symptoms cover a wide array of body systems. The onset of MCAS is often sudden, and it affects both children and adults. Patients experience a multitude of seemingly unconnected symptoms that mimic other diseases. MCAS doesn’t present with obvious clinical signs, and often hides in plain sight (“Symptoms and Triggers of Mast Cell Activation”). It is the sort of disorder that usually no one hears of until they have it or believe they have it. When telling others about it, MCAS seems like a made-up disease, because, for example, onions and cigarette smoke could trigger a potentially life-threatening illness.
When I was first diagnosed with MCAS, I honestly didn’t worry much about it. I knew another young woman who had it, and she would go into anaphylaxis at the drop of a hat. As I had never had that problem, I thought perhaps the specialist had it all wrong. I certainly had chemical sensitivities, but nothing that had greatly impacted my life. I simply had to be selective about the beauty products I purchased and avoid cigarette smoke. I was so busy playing whack-a-mole with my other disorders that I didn’t do my usual research. If I had, I would have realized that I needed to take my MCAS much more seriously. Unfortunately, because I was passive, my MCAS symptoms became worse than ever.
It began as both upper and lower GI issues. Eating anything caused intolerable pain, and I had uncontrollable diarrhea. I couldn’t really get the doctors to do much. They felt the pain was neurological, and that eating more mashed potatoes would help my stomach adjust to being used again. The specialist who diagnosed me with the MCAS initially felt it was an MCAS flare and prescribed cromolyn sodium and a Zyrtec and Zantac combination, but warned it would take 4 or more months for the cromolyn sodium to work. When I told my GI, he all but laughed in my face. I immediately fired him. He wasn’t doing anything for me, and seemed only willing to congratulate me on my massive weight loss. Worse still, he refused to do anything to help with my complete lack of nutrition. I decided to wait it out with the cromolyn and eat whatever I dared in the meantime. A little after 4 months, I was able to eat again without agonizing pain.
But my MCAS journey was never easy. At first, I could eat anything I wanted, but then I started having anaphylaxis. Luckily, I didn’t have swelling of the mouth or throat, but I would become aggressively itchy everywhere, my eyes, mouth, throat, and nasal passages would itch and burn, breathing would become difficult, my heart raced, my blood pressure plummeted and I would become faint and nauseous. I even had diarrhea, flushing, and extreme anxiety. I struggled to figure out what was going on. I soon realized that *this* was MCAS. Hoping for relief, I put myself on a low-histamine diet. When I still had trouble with food, I tried salicylate and oxalate diets. I struggled to find products that I could use to brush my teeth and wash my hair other than baking soda. I struggled to find products I could clean my home with. I found that I could no longer tolerate touching or smelling essential oils, and had to rid my closet of them. When cleaning or coming in contact with chemicals, I have to wear gloves. Years later, I still struggle with food triggers. Sometimes, I can eat more nutritious foods. Other times, without warning, meat and vegetables will render me unable to swallow. Sometimes I can’t even swallow my own saliva for hours afterwards even after taking Benadryl. The severity of my MCAS waxes and wanes, but it is always there, and I am forever thinking of it when I go out. Even when I am at home, I have to be careful. That tomato sauce might smell amazing, but I know if I eat it, I’ll be spitting into a cup like a Mamaw and her spitoon. All I’ll be missing is a rocking chair on the porch.
I am hopeful that at some point I will find a combination of medications that work well and allow me to enjoy life more. MCAS is a difficult illness, both in diagnosis and in treatment. The good news is that with the right team, it is possible. Like with all goals, it is the amount of effort we put into it as well as the effort of those around us. Even in life’s struggles, a good friend or family member is irreplaceable. Together, we will strive for a healthier tomorrow.