My Crohnic Life

– LIFE WITH AN INVISIBLE DISEASE – 

“Thin” Isn’t Always a Privilege

“I wish I had Crohn’s so I could be thin.”
“You’re so lucky you don’t gain weight!”
“I wish I had Crohn’s so I could eat whatever I want.”
“You don’t need to workout, you’re already so little.”
“I know Crohn’s sucks, but at least you look amazing.”

While my loved one’s meant no harm with these “compliments”, phrases like such can be extremely damaging to one’s body image, mine included.

Through my adolescence and young adult years, I feel fortunate to have been able to maintain confidence in my physical appearance. Sure, I’m not perfect and I’ve picked on my looks in front of the mirror, like I’m sure many of you have; I’ve have bad haircuts, worn regrettable t-shirts, my teeth are crooked and my skin sometimes breaks out. Yet, these are not the body image issues I struggle with deeply.

Upon looking in the mirror, I’m happy with what I see; dark blonde beach waves, deep brown eyes and a faint smile. Now, lift the veil. I’m still standing there, but the reflection has changed.

I see pale, bruised skin hugging my body; I see my hand hanging so limply from my sling after my shoulder inevitably subluxated for the third time that day. I see scars scattered like stars on my belly. My once defined abs, are lopsided from surgery and bloated consistently. I see the disappointment and anger as hot tears roll down the cheeks of a young girl whose only dream of playing college soccer was demolished. I see thinned hair and brittle nails from my medications. I see a body that hates me so much it wants to kill me.

“I wish I had Crohn’s so I could be thin.” Well, I’m not thin. My body is constantly starving and malnourished. This deprivation led my doctor to believe that I had an eating disorder. The only issue with this diagnosis is that I didn’t have an eating disorder. Yet, she negated my truth, dismissed my symptoms and continually gave me pamphlets and resources for ED support. Crohn’s doesn’t make you thin; the pain, medications, surgeries, scopes, nausea, vomiting, diarrhea, anxiety, fatigue, depression and more make you thin.

“You’re so lucky you don’t gain weight!” And YOU, my friend, are so lucky you can gain the healthy weight you need. About 6 months ago, my doctor explained to me that I was underweight and needed to put on some pounds; well, unfortunately since then, I’ve lost another 25 pounds. I haven’t weighed this much since I was 13. I would love to gain a little bit of weight if all it meant was some warm and happy bites of pizza, followed by a little movement later on. Part of why I don’t gain weight is because of my extended hospital stays. I am currently writing this from my hospital bed, unable to eat and unable to partake in all the yummy Thanksgiving food tomorrow. So, am I really so lucky to not gain weight?

“I wish I had Crohn’s so I could eat whatever I want.” All I have to say to this one is, what the fuck?! I don’t know where you acquired your IBD knowledge, but this disease typically eliminates a lot of different foods from your diet; especially your favorite sugary and fatty snacks. You can’t eat whatever you want without risking extreme pain, diarrhea, ER visits or a bowel obstruction. So again, what the fuck, dude?

“You don’t need to workout, you’re already so little.” Being thin is not my goal for working out, and I don’t believe it should be anyone’s goal. I think the goal of exercise is to be healthy. I workout because it helps my arthritic joints, relaxes my knotted back muscles, quiets my anxious brain and resets my headspace. Working out and being healthy/fit is way different than just being thin.

“I know Crohn’s sucks, but at least you look amazing.” First of all, you actually don’t know that Crohn’s sucks. Secondly, under the make-up, slim figure, curled hair, and lip-gloss is the same old sick girl that would rather have her health than her looks, any day.

Ashley Carnduff

Ashley Carnduff

To put it plain and simple, the grass isn’t always greener, my friend.

While I’m not here to propagate, nor negate the validity of “thin privilege”, I just want to bring awareness that there are many factors that influence your weight. Whether a person is underweight or overweight, we don’t get to judge. I am too thin because of an illness; yet there are so many other diseases out there that cause you to gain weight instead. We are so quick to diagnose a female like me with an eating disorder, and we are too quick to label a person who is overweight as “lazy”.

It is not our place to put these labels on one another. You never know what someone is going through.

So today, while you are sitting around the dining table, inhaling glorious mashed potatoes, warm turkey and pumpkin pie, remember the “thin” girl in the hospital, without her family and who’s unable to eat.

Thin isn’t always a privilege.

Ashley

Luna: My Moon and My Stars

According to NASA, the moon’s purpose is to make the Earth a more livable planet through the dark hours of night, as the brightest and largest object in the sky.

While she may not be large, Luna’s light shines endlessly and makes my world a much more livable place, especially at my darkest hours.

This sweet little Aussie is my Emotional Support Animal; after joining my life, I quickly learned that Luna battles severe anxiety as well. Over the past year and a half, we’ve been slowly overcoming our angsts together.

When I’m in pain, she protectively and gently brings comfort by lying next to me; when I nap, she positions herself across my legs to keep an eye on me; when I’m crying, she immediately runs to my aid by giving me a literal hug and ferociously licking my face. Luna has become so in-tune with my emotional needs, that the slightest sniffle will send her scrambling across the hardwood to save the day, when all I actually needed was a Benadryl.

Although she is a notorious sock thief, and her hobbies include shredding sticks inside the house, this little monster has known exactly what to do for me, with no formal training, since day one.

Much like the Earth and Moon, my world would wobble off its axis without her.

Do you have a Luna in your life? I would love to here about her or him.

Ashley xx

Anxiety

To the doctor that looked at my 14 year old body that was starving and malnourished and deemed me anorexic, regardless of how much I, or my family, tried to argue otherwise… I have anxiety now.

To the male nurse that violated my boundaries at age 15, after surgery, when I was most vulnerable by exposing my naked and battered body to a room full of doctors, nurses, family and strangers… I have anxiety now.

To the same nurse, who prematurely stole me from recovery and caused me to hyperventilate after major abdominal surgery on the way to my pediatric room because you rambled on about the extreme pain I was going to face… I have anxiety now.

To my freshman year professor that received an email regarding my specified medical accommodations established by the university, and simply asked, “So, what’s wrong with you?” loudly and amidst a room of my peers… I have anxiety now.

Although anxiety, to a certain capacity, can be healthy for humans, it can easily overstay its welcome and manifest itself into a harmful darkness; rather than priming our problem-solving/critical thinking skills, it overtakes the brain and controls our every move like a marionette and his puppet.

For years, I moved through life with limbs tethered to these strings; I doubted whom I was, lost my voice and questioned every aspect of my existence.

Although I’ve tried, no magnifying glass can spot the start of my anxiety on my life’s timeline. Not only do I believe I was genetically predisposed to this mental illness, but I also believe my health (or lack thereof) caused it to escalate immensely.

No length of therapy can help me solve the source that so viciously fed my inner monster; from a young age I always needed to have the best grades, be the best athlete, have the best clothes, etc; I held myself to impossible standards.

Though present, I could shove this monster to the darkest corner of my brain to hide it from the outside world. After receiving my first diagnosis after striving for a life of perfection, this monster painfully clawed itself to my surface and took over my body, leaving only my physical appearance for the planet to see.

While my physical health spiraled down and down, so did my mental health; I was constantly worried about the next day, my next dose of meds, my next wave of pain, my next appointment, my next meal that my stomach would allow me to eat; would I need surgery? Different meds? Would I live?

For years, my brain has functioned in fight or flight mode. It hasn’t been until recently, that I’ve started to defeat this monster. After many trial and errors with anti-anxiety medication, I am now taking Cymbalta. I have found success with this drug, and I’ve finally found some relief from this constant, lingering, dark cloud. I am also working with a lovely therapist who has her own past with chronic illness. While our main focus is my anxiety, she has helped me with nutrition tips, sleeping tips, travel tips, etc.

Her methods of coping with anxiety are truly the first to work for me; her main focus is on emotional processing. Whenever my mind starts to spiral, I am supposed to sit with this feeling of anxiety or panic; I acknowledge its presence. I sit in silence and identify where the anxiety is manifesting itself in my body. What does it look like? Color? Texture?

I then start to talk to my anxiety; I recognize it and kindly explain that it doesn’t serve me. I then let it go.

I also use visualization and old memories to distract my brain; after acknowledging the anxiety, I ask myself what feeling I’d like to replace it with (i.e. strength, comfort, safety, happiness, peace, etc). Then I bring up a memory that triggers these emotions. For example, I imagine Hawaiian beaches from my trip to Maui if I desire peace; I visualize myself sitting on top of Angel’s Landing at Zion National Park when I seek strength.

This works wonders for me.

The last piece of my approach is meditation. Meditation and I have had a frustrating relationship, and we still sometimes don’t see eye-to-eye. Some days she embraces me with open, warm arms and other days, she slams her front door right in my face. My therapist has taught me so many useful hacks that I want to share with other wanna-be Zen masters.

  1. You don’t have to be in an upright, seated position to meditate. I have joint and spinal problems + I have weak connective tissues due to hEDS that cause my muscles to feel weak and fatigued; there is no hope in finding peace and stillness when your body is screaming “WTF!” I like to lie down, in bed, with pillows supporting my lower back; I also cover myself in a weighted blanket.
  2. You don’t have to meditate for an hour or even five minutes for it to be meditation. Meditation can be as simple as a 30 second breathing practice in the grocery store checkout line.
  3. If you stress too much about your mind wandering during this time, I recommend using a guided mediation app! I do this often still, but it’s also a great hack if you’re new to the practice.
  4. You can’t be “wrong” or “bad” at meditation; I am still working on accepting this because I’ve struggled with this practice for many years.
  5. I do a “Four Lights” meditation first thing in the morning. To put it briefly, you sit in a meditative state and close your eyes. You first visualize a light coming from above; step into this light. Feel its comfort, warmth, color and energy. I find this light comforting. Then, turn this light off, and visualize a beam of light coming up and out of the earth and step into it; what is this light like? I personally find this light to be energizing. The third light is sunlight. Think of the sensations felt on a hot summer day; I envision myself at the beach. This light makes me happy. The last light is your inner light; where is it in your body? What does it look/feel like? Visualize it at its start and then let it spread through your body until it seeps from your extremities and surrounds you. You are now in a safe bubble. The idea is this light is always within you and you can bring it forward at anytime you need to.

Although I have found a trusting alliance in these practices, I still battle this inner monster daily. I’m slowly escaping this darkness, and I feel more like myself than I have in years. For me, this would have never happened without the help of my medication and therapist.

The emotional trauma that accompanies illness is not talked about enough. This is a gentle reminder that it is okay to seek help. It’s okay to go to therapy. It’s okay to take medication.

“When the past has passed from you at last, let go. Then climb down and begin the rest of your life. With great joy.” – Elizabeth Gilbert (Eat, Pray, Love)

I am always here as a listening ear if you have no one else to turn to.

Love you.

Ashley xx

EDS (Hypermobile Ehler’s Danlos Syndrome)

Look, I’m no expert. But this illness? Yeah, f*cking bullsh*t.

And no, I am not negating the validity; this illness is all too real.

It just SUCKS.

ELSThose who are suffering from Hypermobile Ehler’s Danlos Syndrome experience frequent joint subluxations, dislocations, extra-bendy joints and fragile skin. hEDS causes the connective tissues (i.e collagen and fascia) to become weak and unable to stabilize the body’s joints.

Small tasks and movements (opening doors, sneezing/coughing or grabbing objects) can lead to hEDS patients to suffer from subluxations/dislocations. Small scrapes can cause permanent scars and the slightest of bumps result in black and blue bruises.

Personally, when I’ve been tested using the Beighton Scale, 7/9 of my joints displayed hypermobility. I struggle with subluxations in my ribs, my left shoulder, vertebrae, wrists, knees and ankles.

Unfortunately, the symptoms of EDS don’t stop here.

There is another form of EDS, which is referred to as Vascular Ehler’s Danlos Syndrome (the arterial form). People with this form experience much more severe symptoms, along with those suffered by hEDS patients.

Because vEDS affects the body’s arteries, these patients can suffer arterial ruptures or dissections, ruptures of the uterus during pregnancy, collapsed lungs, etc. Sadly, the life expectancy of these patients is limited to about 10-51 years old (& most sufferers have experienced a major arterial event by the age of 40).

Ehler’s Danlos Syndrome is my most recent diagnosis as of September 2019, and I’m still working on educating myself. Luckily, I have appointments currently set with a fantastic team at Mayo Clinic (Phoenix) in January of 2020 to make this nonsense my biotch.

Although, I have been struggling with this illness, I could certainly have it much worse. I am working to feel grateful for the constant chiropractor and physical therapy appointments because I can manage my illness, without the fear of having a cap on my time here.

Since I’m a rookie at this point, I don’t have a lot of sage advice on this topic.

Just be kind.

To everyone, everywhere, no matter what. You never know what they’re going through.

I look forward to coming back to this matter as I become more knowledgeable with time and my appointments at Mayo.

Stay strong, zebras.

Love,

Ashley 

xx

POTS (Postural Orthostatic Tachycardia Syndrome)

Ahhhh, if I had a dime for every time I have had to explain this illness to a doctor, I’d be able to pay for salty supplements for the rest of my life.

POTS (Postural Orthostatic Tachycardia Syndrome) is a disorder that causes orthostatic intolerance, as one of the main symptoms. Basically, the blood vessels in my legs are weak and unable to effectively pump blood to my brain when I change positions (i.e. sitting to standing) and my blood pressure tanks. To compensate, my heart rate rapidly increases to get oxygen to my brain. If this clusterf*ck of a survival system fails, I pass out.

POTS
POTS

Have you ever experienced a head rush after standing up too fast? You know, maybe you haven’t had enough water, and you’ve been lying on the couch, binging Real Housewives for the past 7 hours? (I don’t pass judgment because same). This is what POTS is like, except these “head rushes” are referred to as episodes.

During these episodes, my vision goes black, I can’t hear anything, I lose my balance, Vertigo floods my head, I can pass out, etc. After this portion passes, the episode can last for hours; I become agitated, extremely irritable, tense, plus I get headaches, nauseous and my body vibrates from shaking (especially my hands). I become irrational, anxious, hostile and volatile. According to my general physician, the reaction sparked by a POTS episode, is comparable to a diabetic experiencing low blood sugar.

So, the treatment? Salt!

The reason potsies quickly reach for salt is because it raises blood pressure. It gives me almost instantaneous relief when I’m in an episode, and I quickly snap out of it (most of the time).

I constantly have salty supplements such as Nuun tablets, Liquid IV and Limon 7 packets (a Mexican candy that consists of a salt and lemon powder) shoved in my purse. I can also find some relief with drinking water or caffeinated drinks such as Coca-Cola. Restorative yoga and inversions can also work wonders for me; it regulates my heart rate and gets my blood flowing.

Although there’s no cure, this illness can typically be manageable with the proper medical care and education regarding the syndrome. Like every disease, every person experiences it differently and at different levels of severity. There is a major lack of awareness of invisible illnesses in general, but this one has to be among the least visible of all; the majority of medical professionals are even baffled by the phrase “POTS” (however, it seems as if awareness is increasing).

My advice, if you have POTS is to:

  • Become as educated about the illness as possible; knowledge is power!
  • Talk about it with those close to you (that you trust), so that they can HELP you. When I’m experiencing an episode, my brain fog clouds my judgment to the point where I don’t even think to eat salt or drink water sometimes; my family and boyfriend are aware of the warning signs and suggest salt for me, if need be.
  • Keep salt handy! Keep it next to your bed, in your backpack, purse, car, locker, bathroom, friends’ houses, etc.
  • Advocate for yourself. This can be hard as f*ck. In my experience, doctors can be quick to bypass these symptoms because they aren’t educated about POTS & don’t want to spend time listening. Make them hear you! Your concerns, questions, anxieties, feelings and symptoms are VALID.

My advice if a loved one has POTS is to:

  • Again, become as educated about the illness as possible; knowledge is power!
  • Listen to what your loved one needs; don’t pass judgment and don’t dismiss their feelings. They trust you with this delicate & personal information; what they’re feeling is REAL; they question their own symptoms enough.
  • You are NOT their doctor; your loved one knows better than you.
  • Watch for the warning signs of an episode (irritability, confusion, dizziness, shakiness, spaced-out looks, etc.). Grab them some water and salt and gently encourage action toward resolving the episode.
  • Advocate for your loved one, but never speak over them.  
  • Show them love & support; that’s what they need most from you.

Sincerely,

One salty b*tch

xx

Crohn’s & Arthritis

Most horror stories set on Friday the 13th involve slashers named Jason, a damsel in distress and cheesy Hollywood effects. My own Friday the 13th tale involves less psychopaths, yet rivals the gore and terror categories.

My first diagnosis came after years of unexplained medical anomalies. On September 13, 2013, my pediatric GI doctor found an aggressive form of Crohn’s Disease (via scope) that was destroying my gastrointestinal (GI) tract from the inside, out.

At that point, I was just 15 years old; I was also a straight A student, a multi-sport athlete and the supposed model of health from the outside…

So what the f*ck?

I had NEVER heard of Irritable Bowel Disease, and it had been slowly killing me for the better portion of my life (yes, it was quite shocking to me too).

The Crohn’s & Colitis Foundation simply defines Crohn’s disease as, “an inflammatory bowel disease that causes chronic inflammation of the gastrointestinal tract.”

The GI tract includes everything from your mouth to your ass (yikes!), but it most commonly affects the ileum and the cecum (or the end of the small intestine and the start of the large intestine). This is me!

This lovely part of my anatomy was swollen shut, and my intestines were riddled with hundreds of ulcers. I couldn’t eat, I couldn’t sleep and I was in indescribable pain. Daily visits to my local family medical clinic proved my blood work was f*cked up (scientifically put, of course) and we knew something was horribly wrong.

After multiple scans, scopes, doctor visits, tears, drawn labs, etc. it was clear that my immune system was viciously attacking my body. Quickly came the opioids, the steroids, the antibiotics and Humira injections. I was told this course of treatment gave me a 50/50 shot of avoiding surgery. Guess what ‘50’ I got?

I was admitted for the first time about two months later, right before Thanksgiving. I was to be transported to Boise St. Luke’s Children’s Hospital to have a bowel resection to remove 6 inches of intestine (and, unknowingly, my appendix).

While scrolling through Instagram on November 28, 2013 I passively witnessed my friends and family celebrating the holiday together; I was in the hospital, unable to eat and in pain, awaiting my first surgery.

That night, my nurse had the simple task of putting a fresh IV in to prep me for the next morning. It took 13 needle sticks, about 7 nurses and 3 hours to complete this basic chore; I had no idea that this night would set the tone for the next two weeks (or 6 years, if we’re being honest).

This surgery HURTS. The recovery is AGONIZING. The pain is UNIMAGINABLE.

Unfortunately, this wouldn’t be my last resection. In February of 2016, I was hospitalized to get another 3 inches of my organs removed. This trip to hell was not much different.

To make things even better, my blood work showed that I had built up antibodies to my only form of treatment, the Humira. This began the tumultuous process of switching to Remicade infusions.

Although the road has still been rocky since, and I did have to bid adieu to my gall bladder in 2018, I’m grateful and happy to say I am in remission in 2019.

Now that you have the gist regarding how this sh*tshow of mine started, I cannot wait to expand the conversation and dive deep into this invisible world.

Thank you so much for joining me.