30 Things: Invisible Illness Awareness Week

30 Things: Invisible Illness Awareness Week

So I know it’s already Tuesday night and I’m just now talking about Invisible Awareness week, but I’m a new blogger so give me a break!

Although I’m very open about my dealings with Ehlers-Danlos Syndrome, there is still so much about EDS that many of my friends, family and acquaintances don’t know. Tonight I will share this blog with my family and friends for the first time, and I hope that they will read this entry and leave with a better understanding of what an invisible illness is and perhaps who I am. Deep breath…here goes.

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW:

1. The illness I live with is: Ehlers-Danlos Syndrome

2. I was diagnosed with it in the year: 2011

3. But I had symptoms since: Mainly 2006, but somewhat before then as well.

4. The biggest adjustment I’ve had to make is: Pacing myself. I tend to jump headfirst into whatever I’m doing, be it a workout routine, a riding lesson, homework (OK maybe not so much homework), cleaning ad nauseam. I’ve had to learn to slow down, stretch, warm up, and take more steps in order to protect my joints and my sanity.

5. Most people assume: I’m perfectly healthy. To look at me you’d never guess I suffer from chronic pain. The most common response I get is a surprised “but you’re in such good shape!” But the reason I can function is because I work to stay in shape.

6. The hardest part about mornings is: Getting a move on. Waking up can be hard, especially when I’m having sleeping problems, but depending on what I did the day before, the weather, or if the stars align I often have a very slow start to the day until my body warms up. Again, I have to pace myself.

7. My favorite medical TV show is: House, M.D. For a while I thought I wanted to become a diagnostician because of that show. And honestly I still think I’d enjoy that…puzzles fascinate me. Conversely, shows like Dr. Oz and The Doctors just piss me off…I can tell you that no fad diet that lets you drop ten pounds in two days is either healthy or long-lasting, and I have a bachelor’s degree in Nutrition to back me up!

8. A gadget I couldn’t live without is: My TENS unit. I don’t use it every day, but sometimes it’s the only thing that calms down persistent spasms and relaxes sore muscles.

9. The hardest part about nights are: Waking up unable to fall back asleep because of pain. Nights can be so long….

10. Each day I take __ pills & vitamins: 8 pills in the morning and 3 at night, plus supplementary pain relievers as needed.

11. Regarding alternative treatments I: Fully believe in their ability to supplement and sometimes replace a traditional approach. Craniosacral therapy does wonders for my symptoms, and I only wish I could have it done more often. The key is finding balance between the traditional and the holistic, and tailoring that to your needs.

12. If I had to choose between an invisible illness or visible I would choose: I would never wish for anything other than what I have. I believe I was given this condition for a reason, and although I wouldn’t wish it on anyone, I’m glad I can use it to try to make a difference in the lives of others.

13. Regarding working and career: Right now I’m planning to substitute teach until I get into medical school. From there, I’m not 100% sure what’s going to happen. But I’m very passionate about medicine and fully believe that in spite of the pain and difficulties I’m going to face, I will survive medical school and become a successful D.O.

14. People would be surprised to know: I haven’t experienced painlessness in at least seven years, probably much longer. I honestly don’t remember what it feels like to be without pain. But I don’t let it stop me from lifting weights, riding horses (even jumping!) and keeping a positive attitude.

15. The hardest thing to accept about my new reality has been: Honestly, I don’t know what the one hardest thing is. There’s the fact that I have a 50% chance of passing my condition on to each of my children, but it’s not going to keep me from having kids. I guess EDS’s impact on my academic performance has been the hardest thing to stomach. That and the ignorance some people have when it comes to chronic pain.

16. Something I never thought I could do with my illness that I did was: Compete over fences for the Ohio State Hunt Seat Equestrian Team and qualify for regionals on the flat. Honestly I never even imagined I would ride in college, let alone be competitive!

17. The commercials about my illness: Don’t exist! Sadly, I doubt EDS will ever receive much positive publicity on television. Maybe the work I do here will help make up for that!

18. Something I really miss doing since I was diagnosed is: I don’t know, I’m so fortunate that I can still do most of the things I used to, even if it is to a lesser degree. I do I miss feeling fearless on a horse. It’s not a healthy thing to be over-confident, but I can no longer gallop full-speed through the fields around my house like I used to!

19. It was really hard to have to give up: Bitterness. On my About Me page I talk about the accident that brought my EDS to our attention. I have never blamed anyone for the accident, but the way I was treated for the next two years brought me a lot of emotional pain. Learning to let go of that was unbelievably difficult.

20. A new hobby I have taken up since my diagnosis is: Blogging! Duh, you say. I just figured having a way to both fill my need for venting and to help others with the condition, as well as potentially raise awareness, was a healthy thing!

21. If I could have one day of feeling normal again I would: Take my favorite OSU horse, Devil, out for a good long hack and do some cross-country jumping.

22. My illness has taught me: Perseverance, forgiveness, patience, empathy…this list could honestly go on forever. I struggled a lot the first few years I had symptoms, but I’ve been blessed with such kindness and grace from so many people that I have no doubt in my mind of the good in this world.

23. Want to know a secret? One thing people say that gets under my skin is: But you look so normal! Unless you’re suffering from an invisible illness you cannot understand how upsetting that innocent statement is.

24. But I love it when people: Give me a chance to explain the condition without giving me the “oh yeah I have back pain” or “my cousin is double-jointed” phrases. Almost everyone has back pain, I get it. That’s not what I’m here to talk about. I also love and cherish the relationships I have with my physiatrist, his PA, my physical therapist (she’s the best in the world!), the x-ray staff, and everyone else who has been there for physical therapy, spinal procedures and lots of tears.

25. My favorite motto, scripture, quote that gets me through tough times is: Jeremiah 29:11. I know it’s a little cliché and overused, but it has brought me a lot of comfort over the years. “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

26. When someone is diagnosed I’d like to tell them: Keep moving. Be proactive. Find your weaknesses and work to overcome them. Most of all, do everything you can to stay positive. You can either watch this condition take over your life or you can do something, anything, everything, to fight it.

27. Something that has surprised me about living with an illness is: I’ve become a much more positive person. It is so easy to let something like chronic pain get ahold of you and suck the happiness and optimism out of your life, but I’ve done the opposite. I feel so lucky to be able to have such an outlook, and I’m sure I wouldn’t if it weren’t for the incredible support system I have.

28. The nicest thing someone did for me when I wasn’t feeling well was: OK this has nothing to do with EDS, but when I was in the 3rd or 4th grade I got chicken pox and our neighbor/dear family friend brought over brownies and a kit with tape and construction paper “pox” for me to tape on everyone else so I wouldn’t feel so bad!

29. I’m involved with Invisible Illness Week because: If we don’t share our experiences, how will others learn that these problems exist? And more importantly, I’ve been able to take at least some control of my condition, and by sharing that I hope to empower others who suffer to do the same.

30. The fact that you read this list makes me feel: Humbled. I want to say exposed in case any of my friends/family are reading this, because it’s one thing to share like this anonymously, but another to share such intimate thoughts with those you know. But I’m humbled that you think this matters enough that you’re still reading, and I’m hopeful you’ll share this so that someone else may learn from my experiences!

First Impressions: EDS Defined

First Impressions: EDS Defined

ImageWhen meeting someone new, be it a potential employer, significant other, or your new doctor, the impression you make will directly influence your relationship moving forward.  So today’s blog is an effort to provide you with a first impression of Ehlers-Danlos Syndrome, defined by my own experiences with the condition.

Ehlers-Danlos Syndrome is a connective tissue disorder, and specifically it is a genetic defect that impairs the body’s ability to produce collagen.  (Bear with me, I’ll explain everything!)  Connective tissue (CT) is essentially the glue that holds the body together, and collagen is a protein that is the main component of CT.  Connective tissue is found in virtually every tissue, from skin to eyes to bones and blood vessels.

What this means for sufferers of EDS is that, because our “glue” isn’t the best quality, our bodies tend to stretch and sometimes fall apart more easily.

I have EDS – Hypermobility Type, formerly known as Type III.  The number one manifestation of this type is being extremely flexible, which is a direct result of the collagen defect.  Most people assume this just means I have cool party tricks, like bending my fingers backwards or bending at the waist and resting my wrists on the floor.  But the implications of this hypermobility are much worse.

DISCLAIMER: I can’t speak for everyone who suffers from EDS, so I’m going to focus on the symptoms I experience.  Please note that this is not a complete biography of the condition, only my personal account.

JOINTS

I grew up with more “growing pains” than the normal kid, but half the time I think my parents just thought I was complaining too much.  I was the youngest of five kids, so I did milk every scrape and bruise.  As I got involved in sports, these pains began to include chronic ankle sprains and neck pain.  After my cheerleading accident, these pains worsened severely.

The growing pains, aches, and eventual injuries I incurred (and continue to experience) are caused by, you guessed it, hypermobility.  Because the tissues supporting my joints are weaker than the average person, there is less strength available to protect my joints from injury.  Where a normal person might be just a little sore after jumping and landing wrong on their ankle, tripping on a step or twisting their knee during a dance, my joints can’t sustain the force applied to them and instead I receive larger stretches and tears in those supporting ligaments.

Think of it as a radio tower:  a regular tower or antenna has cables, guy-wires, attached to the ground to keep it upright.  In my case, my joints are like a free-standing tower that has broken or missing cables.  A strong enough gust of wind could easily knock it down without that extra support.

Not only does this hypermobility cause problems during exercise, but it also causes problems during normal daily functions.  I have a difficult time carrying dishes because of weakness in my fingers, and I have often had acute pain during writing for school that becomes chronic over time.

The hypermobility in my back is the most severe, with chronic pain in virtually every level of my spine and dysfunction in my neck, ribs, and sacroiliac (SI) joints that require frequent physical therapy to keep from subluxating (partially dislocating).

While my joint problems are the most severe of my symptoms, EDS plays a role in the entire body and these are just a few of the many problems caused by the condition.

SKIN

You’ll often find people with EDS have pale, nearly translucent skin, that allows you to see a lot of veins near the surface of the skin.  In my case, I have large purple and blue streaks along my chest, arms and legs because the skin in those areas is so thin and clear that you can see the veins.  Other skin complications include easy bruising and tearing, poor wound healing, and irregular scarring, which can cause complications following surgery.

EYES & MOUTH

Another group of key symptoms in my case are the eye problems I deal with.  I got glasses in the 2nd grade and am legally blind without glasses or contacts.  I have very thick lenses and an astigmatism severe enough in one eye that I wear a special contact lens, called a toric lens, that is specially designed to stay in place.

I’ve also suffered from dry eye severe enough that I use Restasis prescription drops daily.  I also have a condition that I first believed to be Keratoconus, a degenerative eye condition connected to EDS, but discovered it is actually an unusual condition called Thygeson’s Superficial Punctate Keratitis.  Perhaps someday we’ll discover a link between it and EDS, but as of now little is known about it.

A less serious but just as annoying eye problem I experience is photophobia, or hypersensitivity to light.  I often need sunglasses even when it’s raining, and when my Thygeson’s is acting up I cannot go outside without them.  This often results in my signature one-eyed squint in all outdoor photos, and this is the case for many EDSers!

Along with the dry eye problems, I suffer from dry mouth which puts me at a higher risk for gingivitis and cavities.  The only ways I’ve found to help combat this are drinking LOTS of water, chewing gum and using a dry mouth mouthwash.  Other problems we experience in the dental region are TMJ pain (grinding or gritting teeth), and hyperextensibility of the jaw, which makes dental visits very uncomfortable.

CARDIOVASCULAR

Many EDSers are born with heart murmurs, an extra “woosh” sound detected when listening to the heartbeat.  In many cases, including mine as far as we can tell as of now, this is an innocent murmur, meaning there are no defects causing the sound.  But for some, this can be caused by various heart defects, including Mitral Valve Prolapse or a hole somewhere in the heart.  In those cases, attention is needed to prevent ruptures, aneurysms and other life-threatening complications.

EDS manifests itself in many ways in the cardiovascular system, and in my case it is with autonomic dystonia (aka POTS, although I have yet to receive diagnosis).  This means I experience large, fast drops in blood pressure when I change positions too fast (i.e. standing up from working in the garden).  In some cases this has resulted in my nearly passing out.  I also have problems breathing, especially in humid weather, that have yet to be explained but almost positively relate to the EDS.

NEUROLOGICAL

People with EDS often suffer from headaches, neuropathy (numbness or tingling in extremities), balance problems and something called “brain fog” (it’s like a prolonged, more frustrating brain fart!).  One of the best methods I’ve found for combating these symptoms is the practice of Tai Chi.

Many, including myself, also have a reduced sensitivity to lidocaine and other numbing agents often used during surgical procedures such as nerve blocks and dental procedures.  In my case this has led to requiring general anesthesia for a spinal procedure I have done periodically in my neck.

GASTROINTESTINAL

Digestive problems are yet another issue for many EDSers, and often involve irritable bowel syndrome (IBS), acid reflux and GERD.

PAIN

Much of the pain experienced with EDS is “idiopathic,” meaning the cause is unknown.  Note that this is the only time I will ever use this word, because I consider it a poor excuse for real pain whose cause can’t be pinpointed.  Idiopathic does not equal imaginary, contrary to popular belief.

In coming posts I will talk about the modalities I use to treat the pain and other symptoms I experience, with links to some really wonderful products I use every day!

EMOTIONAL

EDS can and does also have an emotional impact on patients.  At some point everyone questions whether their pain is real, and when friends, family and physicians question you, it puts a lot of pressure on your sanity.  Without a good support system and proper intervention, EDSers often fall victim to depression.

So, this turned out way longer than I expected, and to be honest I’m probably not going to go back and proof everything because writing this is mentally exhausting.  I hope this brief (ha!) overview of EDS has answered some questions you may have had and that it has been an accurate and comprehensible introduction to Ehlers-Danlos Syndrome.  Just know that this is the tip of the iceberg, and in the coming months I’ll be able to do so much more to raise awareness while telling my story 🙂

http://dailypost.wordpress.com/2013/08/22/daily-prompt-first/

Photo by buddawiggi

Everything Appears to be Normal

Everything Appears to be Normal

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Anyone suffering from EDS or a similar “invisible” illness can understand how frustrating these words are.  The event that finally made me start this blog involved hearing this from a cardiologist who two weeks earlier had told me that I had a hole in my heart.

The experience I’ve had with this doctor deeply saddens me, but also strengthens my resolve to become a physician who respects and believes in my patients.  Upon first meeting Dr. Norton (name changed to protect his identity), he failed to take a few minutes to ask about my life and try to connect with me on a personal level.  In all experiences I’ve had with physicians, both as a patient and while shadowing, this has been key to providing the best care possible.  You cannot effectively treat your patient if you do not know them, if you fail to understand their lifestyle and how it is impacted by their symptoms.  Cookie-cutter patients just don’t exist.

I received a copy of his notes from this appointment and saw that there were multiple errors caused by his failure to ask important questions about the history of my symptoms during the exam.  When he told me I had an Atrial Septal Defect (ASD), he in no way explained what it was and simply told me we would do an echocardiogram with a Bubble Study.  Because he didn’t bother to get to know me, he assumed I was just an uneducated patient who wasn’t deserving of an explanation because it would be a waste of his time.

I spent the next five days or so thinking my life was about to change drastically, that I would have bypass surgery and a difficult healing process that would be worsened by the EDS.  (Understand that I had to do my OWN research to find this out, because he didn’t bother to tell me what complications accompany such a defect).  So when during the test no hole was detected, I was speechless.  As it happens, he couldn’t actually diagnose the ASD until performing the test, and therefore put me through all of that emotional distress for naught.

My most recent encounter with Dr. Norton involved a stress test I had done a few days ago, which was the last straw.  After the test he told me my results were above average compared to his typical patients (most of whom are double or triple my age with congenital or other heart problems), and that I seemed perfectly normal.  When I asked him why I get dizzy doing lunges and squats during workouts, his answer was that perhaps I wasn’t in as good of shape as I used to be (keep in mind, I’m a 22-year old woman who lifts weights 4 days/week).  He then suggested that maybe I should warm up before I work out, but if he’d taken that time to get to know me he’d know that I have an academic background involving health and exercise and I’m smart about warming up before a lift.  When I asked him to explain why I suffer from unpredictable presyncope, dizziness, shortness of breath and tunnel vision, he said I’m just going to have to live with it.  He continued to provide essentially one-word responses to my questions; answers that insulted my intelligence and offended my lifestyle.  The appointment ended with him announcing that there was nothing more he could do for me.

And he’s right, there is nothing more he can do for me.  I’ve been so fortunate to have met with almost exclusively wonderful doctors who respect me, understand that I am well-educated in topics relating to healthcare and believe me when I say something is wrong.  But when I do encounter a physician like Dr. Norton, I’m not willing to roll over.  I’ll keep looking until I find the right cardiologist who is capable of getting to know me as a human being and taking all of my symptoms and my lifestyle into account.

I’m not sharing this story to complain about a crappy doctor (okay, maybe a little).  I’m sharing this because there is an important lesson to be learned: YOU ARE IN CONTROL OF YOUR HEALTHCARE.  YOUR DOCTOR WORKS FOR YOU.  No one knows your body better than you do, and it is important to trust yourself when you think something is wrong.  As a future physician, I can tell you that doctors do not know everything and one doctor is not right for every patient.  If you’re not happy with your treatment plan or the outcome of a physician encounter, then change it.

It’s time more people start taking control of their healthcare, and it’s time more doctors start personally investing in the lives of their patients.