Hello EDSers, PoTSies, and everyone else in blogland. I hope you all have been well and are enjoying springtime! I realized, after checking in on things, that I hadn’t posted anything in a year — an entire year! Wow, the time does fly. There have been a lot of changes in my life over the past year. I got married to the woman of my dreams; we had been dating for a couple of years. We had the most fantastic wedding and I am happy in love. We moved to Seattle, Washington, (from Ohio) where we now reside with our 5 babies; 2 dogs and 3 cats. I have already had two surgeries since moving to Washington. It’s been a whirlwind. I can’t wait to share with you all the important things I have learned over the last year. I will be posting more regularly again, so I will see you more often. And…on with the show! The art show, that is!
As you know, I had an art show in May 2013 based around life with Ehlers-Danlos Syndrome. The show itself was a flop due to an unreliable coffee shop owner who broke many promises, but the art at least saw the light of day (well, the overhead light of night, actually!), and this May I hope to find a better place to showcase all of the pieces, making sure the location is run by someone trustworthy and kind.
Despite the letdown, I am overjoyed to share my art with all of you. And, since it is art, it will live on for many, many moons. After each piece is the info from the accompanying card describing the EDS symptom in greater detail. We earned $200 in donations at the show, all going toward the new EDNF EDS Treatment Center, so that is fantastic news. So, without further adieu, here goes nothing!
And the art…
The following are all pieces I’ve done in honor of those of us with EDS, PoTS, or any other chronic illness. My goal is to increase awareness of our invisible illnesses. All pieces are copyrighted, so please don’t use without permission.
This painting portrays a cross-section of tissue with faulty collagen in someone with Ehlers-Danlos Syndrome, a connective tissue disorder. Collagen is in everything from our skin, to our blood vessels, to our organs. This means the body of a person with EDS does not function properly. Collagen is the “glue” that holds our bodies together. People with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles, and ligaments.
EDS is a group of genetic disorders, characterized by unstable joints and hypermobile joints (joints that move beyond the typical range of motion), stretchy skin, and fragile tissue (skin that tears and bruises easily). There are six major types of EDS. The different types of EDS are classified according to their signs and symptoms. I was diagnosed with the Hypermobile type of EDS in 2005.
Some people with EDS develop a secondary condition called Postural Tachycardia Syndrome (PoTS). When an average person stands up, their blood vessels tighten to move blood around quickly so your brain gets oxygen and you don’t pass out. For example, if you stand up too quickly, you might get a little light-headed. Some people with EDS experience these symptoms on a much greater level; these people have something called PoTS, a form of Dysautonomia. Other forms of Dysautonomia that are similar are Orthostatic Hypotension or Orthostatic Intolerance.
When someone with EDS and PoTS stands up, their blood vessels are too stretchy so they cannot tighten enough to move blood around. Blood pools in the lower limbs and stays there. Because of this, the brain is not getting enough oxygen. When this happens, their body tries to move blood around very quickly by beating their heart very fast – this is called tachycardia. Unfortunately, this doesn’t help the blood move around because the blood vessels still aren’t tightening enough. The person’s blood pressure drops very low. They get extremely dizzy, light-headed, hot, nauseous, sweaty, and eventually they can pass out. In a person with PoTS, this happens every time they stand up. As you can imagine, this makes life very difficult.
I was diagnosed with PoTS in 2008, but I started having symptoms in my early teens. No one knew what was wrong with me, so they couldn’t do anything about it. When I was diagnosed, we found out via testing that after 10 minutes of standing in place I will pass out. My heart rate will go up to 170 (normal heart rate is 60-100) and my blood pressure drops to 50/33 (normal is 80/120). Now, I am on medicine that helps, I eat a lot of salt (it makes my blood thicker), and I get hydration via a port installed in my chest (basically an IV line into my heart). The fluids I get through my port are used to “trick” my body into thinking there is more blood in my veins and so it doesn’t “freak out” as much.
People with the Classic type or Hypermobile type of Ehlers-Danlos Syndrome (EDS) can develop blue sclera, where the white part of the eye, the sclera, turns blue. It tends to be attributed to a thinning of the sclera. Other disorders of the eye that may be found in people with EDS are epicanthal folds, keratoconus, high myopia, lens subluxation, retinal detachments, angioid streaks, strabismus, phototobia, posterior staphyloma, glaucoma, cataracts, macular degeneration, dry eyes, and carotid-cavernous sinus fistulas.
While I don’t have blue sclera, I do have a cataract. I was in my mid-twenties when I developed a cataract in my right eye, a very young age for such a malady, and it affects my vision at night the most. I see a starburst in the middle of my eye when looking at street lights, headlights, etc. My night vision is bad to begin with, and this makes driving at night very difficult.
In someone who has MVP, one or both of the valve’s flaps buckle up (or swing upward) slightly into the atrium as they close. In some people, the flaps may not shut properly. When the flaps don’t close correctly, blood can leak back into the left atrium. This can happen because the flaps are too floppy due to faulty connective tissue. Some people can live with MVP and have no major problems; others need surgery to repair the heart. (KidsHealth.org)
Another condition that can happen in someone with EDS is a dilated aorta, which can lead to an aneurysm. People with EDS should have their heart monitored yearly to catch these conditions early before major complications arise.
I do not have any major heart issues myself, other than one year having a very slightly dilated aorta. It went back to normal, though, thankfully. I get an echocardiogram or an MRI/MRA yearly. My grandfather; however, does have MVP, so it does run in my family.
This painting represents the need for extra care in our house and wherever I go, as well as a comical reference to the sounds my body makes when I move. My joints, large and small, and my spine, constantly are creaking and cracking, sometimes painless and sometimes very painful. My fiancée also kids about wrapping all of the corners of our house in bubble wrap because I frequently walk into them. People with Ehlers-Danlos Syndrome have very bad balance and gait, stumble, fall, and walk into doorways and walls. This is very prevalent in the Hypermobile type of EDS, especially in women, with medical research to back it up. While we do joke about it, I sometimes seriously injure myself by walking into things or tripping and falling. I also have very bad hand-eye coordination.
“One pill makes you larger, and one pill makes you small, and the ones that Mother gives you don’t do anything at all.” –White Rabbit by Jefferson Airplane
I take around 40 pills a day, 15 different medications, plus IV infusions. I take meds for chronic pain, PoTS, muscle spasms, nerve pain, plus Bipolar and PTSD meds. Some meds I take to counteract others. My life is swimming in pills. Some months less, some months more. I’ve been made fun of for trying Alternative Medicine. I’ve been called a pill seeker and even an addict for using Western Medicine. My regimen currently includes 40 pills, all prescribed by doctors that work together to create a treatment plan that works for me. I hate taking so many pills. It makes me feel dirty; though, some of them really, really help. Some, well, we’re working on getting them right. Swallow.
“I don’t paint dreams or nightmares, I paint my own reality.” –Frida Kahlo
My entire life I have dealt with the symptoms of EDS. Whether it was dislocating my knees or shoulders during dance practice, staying home from school with chronic migraines, living with severe GI issues, experiencing debilitating pain, getting severe muscle spasms, having low energy compared to my peers, feeling my heart race every time I took a shower – I had all of these strange symptoms and knew there was something “wrong” with me from a very young age. My family didn’t think much of it, they just knew I was always sick with something, and I was teased for being a hypochondriac. My doctors told me a range of things could explain my symptoms, from growing pains, to stress, to psychological problems. Mostly, I was told there was nothing wrong with me. I knew that wasn’t the case.
With every year came new symptoms or progressive symptoms. Finally, in 2005, at the age of 23, I decided enough was enough and I wasn’t going to take “no” for an answer. I set out to find any doctor that would listen, and after a long list and a lot of office visits, I ended up at Johns Hopkins genetics clinic in Maryland and was diagnosed with Ehlers-Danlos Syndrome, Hypermobility Type.
In this painting, you can see my hypermobility. My joints all move beyond the normal range of motion. You can see my shoulders, neck, elbow, hips, and even my fingers are hyperextended. As a child, to me, hypermobility was welcomed – I was flexible so I danced and swam. I twisted myself into a pretzel. I showed off doing “party tricks” with my body, with my hands. I could stretch further than all of my friends. But, I ended up doing damage to my joints in the long run. I didn’t know better, though I wish I had. My joints cause me so much pain now, and a lot of the activities I did as a child started the wear and tear on my joints that plagues me today. Though, a lot of it just comes with the territory. I currently wear splints/braces on my joints when they are acting up or if I am doing activity that will wear on them; even something as simple as walking is hard on my joints. I can still hyperextend many joints, but the degree is less. As someone with a hypermobile type of EDS ages, the hypermobility lessens; but, compared to the average person I am still very hypermobile.
If you see me around, I might have a cane, a wheelchair, a brace on my knee, ring splints on my hand, or I might not be wearing anything out of the ordinary. I might look run down or I might have a cheery glow. That is why this is known as an “Invisible Illness”…I look normal on the outside. I look vibrant and healthy to people, but on the inside I am crying in pain, suffering from things that one couldn’t possibly fully understand unless they lived in my body. I take handfuls of medicine, require lots of rest, and am not able to work. Life is very challenging. Creating art is painful and I am only able to do a little bit here and there. But, my goal in life is to help others with EDS; so, I blog, I write, I paint. I persevere.
One of the most common things a person with Ehlers-Danlos Syndrome experiences is loose and/or unstable joints. This can result in joint dislocations (the joint actually comes out of place) or joint subluxations (partial dislocations, where the joint doesn’t come fully out, it just comes partially out and goes right back in place). This can happen to both large joints, like the knees, hips, or shoulders, or to small joints like the fingers and toes.
The painting depicts a knee cap (patella) that has dislocated and slid to the outside of the knee. This is a common dislocation for people with EDS, and was my most recent dislocation. I painted this after I dislocated my knee pulling a weed in my garden. While some people with EDS dislocate or subluxate more than others, the pain is still terrible. For example, no matter how many times I dislocate my knees, it is still searing pain every time and the recovery is long and complicated. I don’t often dislocate or subluxate my shoulders, but when I do, it is just as painful each time.
Subluxations and dislocations are not common in the general population, so if you have joint pain, have loose or unstable joints, dislocate or subluxate, and/or have been (mis)diagnosed with fibromyalgia, you may consider that you have EDS.
The most marked characteristic of Classical Ehlers-Danlos Syndrome is extremely stretchy skin – skin that stretches well beyond what an average person’s skin would stretch. The skin is also soft and velvety to the touch, tears very easily, bruises very easily, and scarring is atrophic – very wide and thin like cigarette paper. Skin isn’t the only tissue that tears easily, the insides of people with Classical EDS tear easily, too. This can lead to hernias and prolapsed organs. In most types of EDS, wounds take a long time to heal, but in Classical EDS it is even more pronounced, with uneven healing, scarring, and bruising.
In addition to abdominal aneurysms, there are other maladies that plague the intestinal tract of those with EDS. From severe chronic constipation to diarrhea, flatulence to nausea to vomiting, fissures to GERD, ulcers to dysphagia (difficulty or inability to swallow), functional gastritis to Irritable Bowel Syndrome (IBS), the Gastro-Intestinal Tract (GI Tract) can cause many problems.
Years ago, I had a slightly dilated aorta, which is the first sign that an aneurism may occur. It receded and went back to its normal size, so I am no longer at risk. As far as my GI tract is concerned, I have been diagnosed with severe IBS with chronic constipation, flatulence, nausea, vomiting, fissures, and GERD. These cause many problems in my daily life, and also continue to cause long-term health risks. I must remain on top of my GI health at all times. For my type of EDS, I also get monitored for aneurysms every two years via MRA.
As a dancer, this woman is probably pretty agile and flexible, but she also deals with very bad bruising from Ehlers-Danlos Syndrome, not to mention that she may be causing unneeded damage to her joints. In many of the types of EDS, easy bruising is a tell-tale manifestation. In the Classical type of EDS, it is so commonplace that the body seems odd without bruises.
This was my most difficult painting in the EDS Collection. I had a very tough time, physically, painting it: my arms were hurting terribly, I had bad brain fog, and my fingers weren’t working right. Every time I sat down to work on the painting, nothing would go as planned. I couldn’t paint a straight line if my life depended on it. When I finally thought I was feeling well enough to try again, for the umpteenth time, I lost my balance (probably PoTS issues), fell off of my chair, and the wet painting landed on top of me. It smeared everything and caused me to have to rework things in a way I didn’t want to. It was hard emotionally, as well, as I was unhappy with the finished product, upset with my body, and frustrated that the piece looked so sloppy. After consulting with my fiancée, I decided to keep the piece in the collection because it exposes my life for what it really is some days: chaotic, painful, frustrating, and off-balance. I try to manage things as best I can, but some days, no matter what I do or try, I am unable. Those days I just have to take a deep breath and become one with the pain or frustrations, accept them instead of fighting them, and then release them. It is easier said than done, but I always have to try. One day at a time.