Sunday, April 13, 2014

What to do When I'm Hurting

I recently wrote my wife a letter describing ways she could me when I am in a lot of pain. I thought it was perfect to post here, as it might be something that you could show a caregiver when they are struggling to find ways to help, when they are feeling helpless. Feel free to share, just credit me/link to my blog if you post elsewhere. Much love to you all.

To my dearest wife:

First, thank you for being such a wonderful wife. I am lucky to have you. I love you very, very much. I know this is trying and I know it’s a lot to handle. I appreciate all you are doing, all you have done, and all you will do. Here is a list of things that are helpful to me when I am in a lot of pain. Feel free to try any or all of these measures. All of these say to ask me, but if I am so bad off that I can’t answer, just do what feels right. Err on the side of more is better. Make me take the meds, use the wet heat, massage the area, etc.

  • Ask me if I have taken my breakthrough pain meds (feel free to check my phone app for Roxicodone, last taken).

  • Ask me if I have taken my midday Gabapentin.

  • Ask me if I have taken a muscle relaxer: Valium (daytime), Zanaflex aka tizanadine (evening), can add Flexeril in daytime if Valium isn’t enough.

  • Get me any meds I need and some water.

  • If the lights are on, turn them down (not off, unless I have a migraine). It’s more calming. Feel free to make the room more calming, candles and incense are great. They may help me to relax. (Ask before you do incense though, as it may be too much stimulation.)

  • Ask me if I want heat and/or ice. Heating pad can also do wet heat and that is a great option if I am in a lot of pain. Ask if I want wet or dry heat. If wet, get the wet felt, wet it, wring it out, then place it in heating pad sleeve. It will get the heat deeper, which is always a good thing in the flank and back areas. 

  • Ask me if I have run fluids and/or want to. Assist with that as needed.

  • Ask me if I want you to run a bath with Epsom salts. Assist as needed. (We should try to always keep salts on hand. I want to start using them more regularly.)

  • I will always say yes to massage. I like it hard, so go as hard as you can for as long as you are able. My legs and back/neck are my two preferred places. If I am rocking back and forth, try my legs first. My back/neck need it harder than my legs, so feel free to figure out how much kneading your hands can do and try to do my back and neck the hardest, if that makes sense. Maybe training in massage, like reading a book on it, in advance, would be helpful for the future. Or a class. Or just working your hands out so they get stronger (playing with silly putty is great for this). Also, use your body to provide the leverage and strength, not your hands. Lean into me. Push into me. Don’t rely on handstrength – you will get worn out way more quickly. If you aren’t physically or mentally in the mood to massage me, though, it is totally okay. You are always welcome to say no. Please don’t feel pressured. (Keep in mind, light touch irritates me more than it helps, so if you have done all you can do hard, don’t just touch my skin lightly --- especially if I am having fibro-flare symptoms.)

  • Touching me other than massage, if I am hurting badly, usually can be more hurtful than helpful. It isn’t that I don’t want your love, it is just that it adds to my pain, especially if I am having any skin pain. I get overstimulated and the touching makes things worse.

  • Normally, I don’t mind your company when I am hurting; in fact, it is usually very nice. Sometimes though, it overstimulates me when I am already having stimulation issues. So, it is best to ask. If I do want to have time alone, please don’t take it personally. I love you beyond measure. It just might be too much because then I focus on helping you help me, and I really just need to be focusing on relaxing. Just ask. I usually love you being with me, especially since you are gone all day and I deal with pain while you are away all alone.

  • Lastly, just double-check if there isn’t anything else that I need, and maybe see if I want something to help occupy my brain like my Nook or Law & Order on the laptop.

Thank you. Thank you a million times over. Thank you for marrying a person who needs your help more than most partners and requires you to be a caregiver and a wife. I am sorry I put you through all of this, but I don’t do it on purpose. I know you do what you do because you love me, and I appreciate it so very much. Thank you. Thank you for being so wonderful.

Love you always.
Xo
dani

Monday, March 24, 2014

Unveiled: Ehlers-Danlos Syndrome Art from Show for May Awareness Month

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...



Slice of Life
2012/2013
Acrylic on re-purposed canvas.
16"x20"
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.






Lack of Law & Order
2012/2013
Acrylic on re-purposed canvas.
 16"x20"

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.




  
The Eyes have it!

2012/2013
Acrylic on canvas and wood.
12"x24"
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. 





But I am Le Tired…
2012/2013
Acrylic on canvas and clay, with upcycled wig hair, upcycled chopstick, and upcycled ribbon.
8"x10"
People with Ehlers-Danlos Syndrome (EDS) often experience severe fatigue and are sometimes concurrently diagnosed with Chronic Fatigue Syndrome (CFS). Also, those with Postural Tachycardia Syndrome (PoTS) tend to experience extreme fatigue. Even when these people get plenty of sleep, they don’t feel rested and have a hard time with focus and concentration.

I have been diagnosed, alongside my EDS and PoTS, with Chronic Fatigue Syndrome.





Bleeding Heart
2012/2013
Acrylic on canvas board with sequins.
8"x10"
There are many heart problems a person with EDS can have. This painting is the heart of someone with Mitral Valve Prolapse. MVP is common in people with Ehlers-Danlos Syndrome.
The mitral valve is between the heart's left atrium and left ventricle. It has two flaps that open and close together like a pair of swinging doors. When the heart beats, the left ventricle pumps blood out to the body and the flaps swing shut. This keeps the blood in the ventricle from going back into the left atrium.
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.





Snap. Crackle. Pop.
2012/2013
Acrylic on re-purposed canvas with upcycled packing bubbles.
16"x20"
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.




 

Go Ask Alice
2012/2013
Acrylic on canvas with upcycled toilet paper rolls, upcycled pill capsules, re-purposed prescription information sheets, clay, re-purposed medicine bottle, repurposed IV supplies, sequins, and ribbon.
16"x20"
“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.






Pretty Ill (Self-Portrait)
2012/2013
Acrylic on canvas.
24"x36"
“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.




  
Going Out for the Night
2012/2013
Acrylic on canvas.
16"x20"
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.





Take it to the Limits One More Time
2012/2013
Acrylic on re-purposed canvas. Model: Nicole
16"x20"
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.
 




It’s My Party and I’ll Cry If I Want To
2012/2013
Acrylic on canvas board. Model: Shellie
8"x10"
Of everyone I know with Ehlers-Danlos Syndrome, the most horrible symptom is the early onset, debilitating musculoskeletal pain. It is most common in the Hypermobile Type of EDS, but can occur in all types. It can wake a person up in the night or keep them from sleeping altogether. It can make school impossible for a child to attend, or make an adult unable to work. Pain so deep, so severe, that it can cause vomiting, or even blackouts. It can range from mild to unbearable, hot to piercing, writhing to aching, stabbing to dull, skin-burning to prickly, in one joint or all over, in one muscle or across many muscles. The pain can bring a person to tears, to screams, to rocking in the fetal position. It is not only hard on the person with EDS, but very difficult on the family or caretaker as well. 

I, myself, experience all ranges of pain. Pain is my number one complaint; it started in my youth and each year it seems to get worse. And, while I wish it didn’t emotionally affect my loved ones, it does very much.




  
Bursting at the Seams


2012/2013
Acrylic on canvas with upcycled scarf, plus clay and sequins.
16"x20"
While it can happen with any type of Ehlers-Danlos Syndrome, aneurysms are much more likely in the Vascular type of EDS (vEDS). Arterial, intestinal, and uterine fragility or rupture is common in vEDS. In this painting, the man is experiencing a ruptured abdominal aneurysm; the abdominal aorta (the major supplier of blood to the body) became enlarged and burst open causing blood to pour into the body. A ruptured aneurysm can cause death in mere minutes. If there is any chance of a person having EDS, this is why it is imperative to get tested and diagnosed so doctors can monitor the major vessels in the body and be prepared should an aneurysm arise. If caught very early, it can be monitored and surgery can be performed before it becomes life-threatening. Usually, there are no warning signs and no pain is present, so without monitoring, a person might not even know they have an aneurysm. It is best caught early by echocardiograms, MRIs, and MRAs. Once a doctor knows a patient has EDS, it is usually common practice to test annually, bi-annually, or every five years depending on the type of EDS. 

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.





One-and-Two, Black-and-Blue!
2012/2013
Acrylic on canvas.
16"x20"
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.




 

To be or not to be, that is the Question…
2012/2013
Acrylic on canvas sheet.
16"x20"
Ehlers-Danlos Syndrome is a group of genetic disorders; therefore, they can be genetically transferred to an EDSer’s offspring. If a person has EDS, their kids may inherit it. The two types of known inheritance patterns are Autosomal Dominant (only one parent needs to have a certain type of EDS to pass it on to the kids) and Autosomal Recessive (two copies of the gene must be present to pass on certain types of EDS to kids).

Autosomal Dominant forms of EDS:
The types: Classical, Hypermobile, Vascular, and Arthrochalasia. If one parent has one of these types of EDS, every single child the person becomes pregnant with has a 50% chance of inheriting the gene and being symptomatic. This means, if you have 4 kids, all 4 kids have the potential to have EDS. On the flipside, all 4 kids might not inherit the gene, or just some of them may end up having EDS. Because of the high-risk of passing these forms of EDS on to your kids, if you are diagnosed, a genetic counselor will discuss these risks with you.

Autosomal Recessive forms of EDS:
The types: Kyphoscoliosis, Dermatosparaxis. In these types of EDS, the child must carry two affected genes in order to be symptomatic. If the child does carry both genes, they have a 50% chance of being symptomatic. If the child carries only one gene, they won’t have symptoms; they would just be considered a carrier. But, if later in life they had kids with another carrier, there is a 25% chance their child will have symptomatic EDS.




 Me, Sissy, and Wife

The wife and I

Hope you enjoyed the art as much as I do! Have a beautiful week and check back soon - I will be posting more regularly. 

xo
dani