Sometimes, IT IS ABOUT THE NAIL!

Photo Credit: Morgan Anderson © 2013

A friend of mine recently shared a YouTube video on Facebook titled, "It's Not About the Nail." Jason Headley, the creator of this viral video, spotlights a common divergence in communication and understanding between a male and female. This video, in particular, highlights a woman's desire to be heard, without judgment or assistance, and a man's instinct to help and fix a situation where he sees an obvious solution. It is an age old contention in romantic partnerships that we, more often than not, are better off agreeing to disagree on, or meeting in the middle.

Those of us who battle chronic illnesses have our fair share of "nails," stuck in various places of our body, with little hope of removal and subsequent healing. In our case, it really is about the nail. Unlike the the woman in the YouTube video, we do our best to hide the aches and pains of these nails from onlookers and spend everyday seeking a remedy for our wounds. As this YouTube woman sits proudly with her nail in forehead, she complains of everything but her very obvious, and solvable, problem. She allows herself to be exasperated by trivial matters, issues that the chronically ill only dream of worrying about. Snags in our sweaters? When was the last time we felt up to an occasion that presented the opportunity of wearing a sweater. Heck, I've been wearing the same t-shirt for three days. We, the sick, do not have time to worry about added social, scholastic, or financial 'pressure', as the nagging pain is always there to occupy our thoughts. We feel bad as our loved ones offer their help for a problem that has no immediate solution.

There is a way, however, to relieve some of the pain and discomfort of these nagging nails: share it. If you're like me, your nails are invisible to the naked eye. You have no perceivable signs of an open wound, no obvious signifier that "something is wrong here." If you do not tell the coworkers, friends, and family in your life about your nails, they will not know they are driving them further, adding insult injury. Help the people in your life understand what you are going through, tell them (matter-of-factly) how you are feeling, so that they might be able to work around your nails, perhaps even relieving some of the pressure. It is not our lot in life to suffer in silence and feel alone. We do not have to feel bad about a disease that is not within our control. Our lives will by no measure fit the "norm," but if we don't face our illness honestly, we will never be able to find our own sense of normalcy.

Do not be afraid to share your nails, do not hide them, everyone has experienced the driving force of nails in their life at some point, it is in sharing our experiences that we begin to heal.

Photo Credit: Morgan Anderson © 2013

PS - Are you an #endowarrior, too? [Diagnosed with Endometriosis] Save the picture below and add your name to it to spread awareness:

Photo Credit: Morgan Anderson © 2013

Disclaimer from blogger: This blog originated and was written under the influence of a migraine. I hope the concept comes across despite the obvious lack of brain function.

Let's talk about Lupus.

lupus |ˈloōpəs|

disease

Systemic lupus erythematosus (SLE) is a long-term autoimmune disorder that may affect the skin, joints, kidneys, brain, and other organs.

Most of the people I have shared with about my diseases have never heard of them, or, if they have, couldn't differentiate them from the flu. It is never irritating. How could it be? Before I became intimately involved with the medical field, I didn't know about most anything, and frankly, I didn't want to. If you're not a nurse, doctor, or in some other medical profession, why would you want to know anything about illness? Most of our lives are lived in prevention of sickness, not in the understanding of it. However, I think that becoming more knowledgable would greatly benefit all those who are struggling with something. Let's face it, most of us know someone who has some disease or disorder. If we truly care, we'll educate ourselves on what he or she has; take a vested interest. It does not mean you have to try and cure your friend or loved one, but try to know what challenge they're facing. I will add, that if you are someone with an illness or ailment, if you don't tell anyone, you can't expect them to be understanding of your situation. The door swings both ways, people. As far as I know, no one can actually read our minds - yet. 

Moving along. 

So. Lupus. That big fat elephant in my blogosphere. This is one of the 'weird' diseases I avoid announcing that I have - sometimes I even leave out that I have it. It usually only causes confusion. It's hard to explain, and seems to me to be the chameleon-esque grandfather of autoimmune diseases. But, let's first discuss how I originally discovered that I had lupus: 

Sixteen months ago I had abdominal surgery to treat my endometriosis. Due to the fact that it was an extremely difficult and life-threatening surgery - I traveled to California to be under the specialized care of Dr. Camran Nezhat [professor of Medicine at Stanford University]. Before the surgery, I signed a consent form that my surgery be 'donated' to science for research at UCSF; in doing so, I waived my right to post-operative notes on all procedures. All I knew when they were finished was that I had stuff taken out of my abdomen and I was in a lot of pain. It was not until several months ago that I received the post-operative notes in an envelope from my insurance company. I, being the nerd that I am, carefully read through them several times. I was shocked to find something that didn't add up to a sole diagnosis of Endometriosis. So, I took this new finding to one of my doctors, in combination with a family history of the disease, and suggested that I may have Lupus. It turns out that my assessment was accurate, and I have since been diagnosed with Systemic Lupus Erythematosus. I am lucky to only be in the early stages of the progression of the disease, without renal involvement (so far), however, that means that most medical treatments are out of the question because the side effects would be worse than the actual disease at this point [a common treatment for Lupus is immunosuppression via chemotherapy - yikes - no thank you!] Nevertheless, I was diagnosed with yet another autoimmune disease, and little to no successful treatment for any of them. 

Let's talk about the presentation of Lupus. It is usually a disease that is diagnosed by process of elimination, as it emulates the symptoms of so many other possible problems, doctors have to carefully rule everything else out. My case in particular presented with the following: 

• Raynaud's Syndrome [Onset at the age of 14 during winter soccer try-outs. In the cold, my fingers turned white - this condition has grown to be more severe - in the slightest incidence of cold/stress - my fingers and toes will turn white/blue and go numb.]
• Shortness of Breath/Chest Pain [a year ago - I worried that I was having a heart attack or some heart complication - my EKG came back normal but my doctor knew something was not right - I was diagnosed for a short period of time with asthma that did not always improve with use of inhaled corticosteroids - turns out that a combination of Lupus and Endometriosis are the culprit] 
• Fever [I chronically will get low-grade fevers without infection - I joked that I was getting early menopause until I realized that this wasn't for a 20-something year old that isn't actually going through early menopause - oops]
• Fatigue [I am sure most of my audience reading this will have watched some sort of physical altercation (a fight) at some point in their life; ever notice how tired the fighters are during and afterward? Notice how they can only fight in short bursts and need frequent breaks to rest? Well, consider me a fighter, except I'm fighting myself, so it's doubly tiring. My immune system is literally attacking the healthy tissue throughout my body, and it requires a whole lot of rest, that isn't very restorative. I've always been an overachiever, but my body has taken that notion a little too far, wouldn't you agree?] 
• Skin lesions that worsen or appear with sun light [This one was recent, and the condition that solidified the diagnosis. I had never had much of a problem with sun exposure until December of 2012, when a few minutes of sun exposure left me covered in hives that turned into open wounds all over my body - ouch!]
• Joint pain [I've always chalked this up to being arthritis - but Lupus and Rheumatoid arthritis are both autoimmune diseases - thus attacking the friendly tissues in your joints and causing pain and swelling - feels great!] 
• Memory Loss [Here I was thinking that I was a) getting old b) getting dumber or c) caring less about remembering anything; however, even with great effort, my memory doesn't always work the best, thank you, Lupus] 
• Lastly: the "butterfly" rash [I always thought that I was just a little red in my cheeks and the bridge of my nose, but my doctor actually pointed out that it is actually a flared up rash/irritation of sorts from the SLE - mine is not as 'obvious' as some pictures I've seen on google but can be very pronounced during a flare] Pictured below: 

Notice that there is more than just a "redness" to my skin; there is a patchiness where the rash is worse in areas that can often be difficult to cover up but, as you can see below, can usually be hidden with makeup. 

#rashbegone!

Well, there you have the symptoms of my disease. They are kind of random, and don't seem to be very specific, but affect my life in a great way. The pain and fatigue are frequently debilitating, and every morning I don't know how I will feel upon waking up. Everyday is a wild adventure. My carefully planned life was thrown out the window long ago, there is no such thing as "calculated" or "predictable" in the life of the chronically ill. Though, as long as we are living, we triumph. I have discovered that my attitude, not my illness, is the greatest determiner of my quality of life. Just because I can not do what others may be able to, does not mean my life is worth any less. 

I hope that all of you reading this will share this journey with me, sick or healthy, it's the ride of a lifetime! Now let's go enjoy it together. 

Cheers! 

Sometimes, determination gets you eaten by a bear.

Have you ever been proud of yourself for overcoming an obstacle and having a decidedly good day? It takes a great deal of determination to conquer such a feat. Sometimes, though, determination gets you eaten by a bear.

Today, I was the little fish making a leap of faith...straight into that bear's mouth.

As my readers know, I have Crohn's Disease. Yesterday, I could tell by the pain radiating from my intestines, that a flare was coming on. "Oh no!" I thought to myself, "I don't have time for this!" I worked through the pain and fatigue, then went home to rest. I fasted for two days to give my intestines a break and slept an epically long 16 hours, waking up this morning well rested. Despite my diligence, the flare still hit! Constant pain and endless trips to the bathroom [counting 12 within the first hour and a half of waking]. I considered just calling it a day and crawling into bed and letting my bowels win this one; after all, they were being very persistent. However, I have grown tired of being owned by my disease, and decided that I would make the effort to proceed with my evening as planned. I packed my bags into the car and took off for the evening!

As I was driving down the freeway, I was proud that I was persevering through this little flare and winning! Then, suddenly, it hits. Sharp pain. My insides twist. Intestines wrench. 'uh oh' My foot hits the gas, eyes looking for the next exit. "I hope I can make it!" "Why don't they make toilets built into drivers' seats?" Blue and red lights flash behind, "Oops, I'm in the way." I move to the right to make way for the state trooper, who continues to follow suit behind me. "UH OH!!" "Are you kidding me? I can't pull over now, I'll never make it!" "I also don't want to go to jail." Tears well up in my eyes as I carefully pull to the side of the road. I engage my emergency flashers, roll down the window, and prepare my license and registration. Gripping my abdomen, the trooper appears at my window. "You were going pretty fast there miss." The tears keep building, I cannot even look him in the eyes, "Morgan, do not fall apart" I think to myself. "How how fast was I going?" "78, and this here's a 60." I cringe; it still felt like I had been going so slowly; I knew I didn't have much time to get to a bathroom. Offering me no chance to explain or ask why I was speeding, the officer takes my license and registration back to his squad car. Beads of sweat begin to form at my hair line, armpits feel damp. My bowels are taunting me. "I'm not going to make it." Ten minutes pass, an eternity in a crohnie's world. I am gripping my abdomen, tears streaming down my cheeks, as the trooper comes to the window. "Miss, are you alright?" "I have crohn's disease," I mumble. "I can't hear what your'e saying." "I have crohn's disease, I need to get to a bathroom as soon as possible. That's why I was speeding." "Are you going to be okay? Do you need me to call you aid?" "No, I just need to get to the nearest bathroom, NOW." The trooper points to the nearest exit, hands me my ticket, and wishes me luck. I roll up the window. It's too late. My bowels are beyond my control, the pain severe. Before I know it, I'm creating a scene only infants and the elderly can contend with, except I'm in my 20's and this is mortifying! Immediately I imagine this scene from the movie Bridesmaids:

In that moment, I'd been eaten by the bear.  What kind of patrolman issues a $200 ticket to a young woman who is speeding and crying from pain and an urgent need to use a bathroom, ANY BATHROOM and then makes her wait until she can no longer hold her bowels. Sometimes life is unfair but this was ridiculous! 

For the past two hours I've laid in bed, trying to process what happened this evening. The day I decide to try to be tenacious instead of debilitated, I am punished. And yet, I would try again. I have not lost until I give up. 

Wishing you all a better day than mine, and hoping we can all make it to the restroom before it's too late! 

The body never lies...unless it's mine.

Before you congratulate me, don't. My body is lying to you.

As a personal trainer, I have assessed, measured, and worked with hundreds of bodies. By now, I know the difference between when a client is having an autoimmune response or is simply consuming too much sugar, salt, or other assorted garbage. I know whether my clients are unrested, malnourished, or just having a bad day. I have become familiar with the subtle idiosyncrasies of their bodies as a whole, they speak to me. If only the rest of the world could understand my body's 'language' as I understand theirs.

In the last year, I have been congratulated on a dozen occasions for my 'obvious' pregnancy. At first, I was offended, embarrassed, and corrected their mistaken observation immediately. However, when strangers in my OB/GYN office thought I was in for my 3rd trimester check up, I found it less awkward to go with it than explain the contrary. Given that our encounter was so brief, exchanging congratulations rather than pity has been more favorable.

My doctors, let alone my friends and family, could hardly believe the 'pregnant-belly-like' experiences I shared with them. How could someone have a flat stomach one hour, and be 'in her second trimester' the next? Well, I won't explain how, but I can tell you that it is possible! Don't believe me? I'm not surprised. As many argue, "PICTURE OR IT DIDN'T HAPPEN!" I have documented a couple instances in the past when my pelvis has been so inflamed from the endometriosis that I begin to look like a mom-to-be. A picture is worth too many words:

Here I am in the morning before a flare: 

And as the day went on it became: 

Here is the morning following the flare:

Here is a picture from 2011, after my first substantially noticeable flare: 

(even my belly button poked out)

Take a minute to let those sink in. Sometimes I can hardly believe it myself. As frustrating as it can be for people to say, "You don't look sick," the physical symptoms can be downright awkward when interpreted incorrectly. It takes a lot of courage to carry-out 'normal' life while dealing with a chronic disease, and I am proud of everyone I know who fights everyday not to be controlled by their sick body. 

I hope you all will feel comfortable sharing your stories with me. I also hope that you will think twice before judging someone's outward appearances, you never know what someone is going through. 

Happy Holidays! 

Endometriosis: Alien Body.

alien |ˈālyən; ˈālēən|

adjective

unfamiliar and disturbing or distasteful : her body was alien to her 

Please stay calm, I have not literally morphed into an alien. 

Though, There are days that feel I have physically morphed into one. Within recent years, I often feel trapped inside someone else's body. There is no way this is the same body I used to hike mountains, climb trees, run marathons, and lift weights with. No way! I can hardly fathom doing what I used to now. How did I even do it? I can't remember the last time I felt good enough to do any of those things regularly, let alone work with some consistency. My friends and colleagues used to call me the "energizer bunny," as it seemed my strength and vitality were limitless. Those were the days. Now I live in a body that has been sucked dry of all energy beyond pure existence. And the worst part: I don't have a cure. 

Let's look at how my body has changed in just the past year. (Gulp!) Aside from from a harsh increase in pain, inflammation, nausea, fatigue and a general ill feeling, I have watched my exterior change as well.  Last summer, I was a light 135 lbs for my 5'6.5" frame, 18% body fat, and could run five miles like it was a walk in the park. Yet, this was still "poor" considering what I was used to. Normally, I preferred to be my usual, 125 lbs, 15% body fat, and enjoy an easy 8 mile run. After three surgeries, on-going hormone therapy, pain pills, and a number of invasive tests, my physical body has taken quite a toll. I don't get to workout 5-7 days a week like I used to. These days I'm lucky to average three or four workouts a week. /#momentoftruth/ Now I measure in at 155 lbs, 29% body fat, and running 2 miles is a challenge on average, if possible. This is devastating for me, a personal trainer, and "fit" person. I am not overweight, but when I look in the mirror, I see someone else. Yet I eat healthier than I ever have in all my life and watch my body lose it's shape anyways. I can handle the pain, but watching myself turn into someone I don't recognize, really makes me hate my diseases. It's a challenge mentally, knowing that everyone who watches my body change as well, thinks that I'm laying in bed watching soaps and eating bon bons all day. Only a fraction of that is true, I do lay in bed all day 60% of the time. However, I workout every chance I feel well enough to, eat freakishly clean, and read non-fiction books in my spare time. I have no regrets for the effort I put into keeping myself in shape, it just feels unfair that I don't reap the benefits aesthetically. Sometimes life is just unfair. This is simply my life's challenge, and I must never give up. I will never stop trying. We are worth every effort. 

I'll get my body back - no matter what it takes. Hormone therapy will not win. Medicine will not win. Disease will NOT win. Who's with me?

Numb.

numb   |nəm|

adjective 
deprived of the power of sensation 

To be deprived, one has to lack a basic material or be denied the possession or use of something; and to deny a physical feeling or perception resulting from something that happens to or comes in contact with the body, is to deny oneself the full capacity and experience of life. Now, there are many ways and many reasons to feel numbness, yet it is ultimately to deaden an unpleasant experience. I have been taught to deaden disease, to separate myself from pain, nausea, and a general ill feeling. It really isn't that hard all the time, I've actually gotten quite good at it, but at what price? This medically encouraged dissociation of mind and body is a dangerous occupation. At what point do we stop living inside our bodies long enough to stop caring about what happens to them? Let's approach this from a couple angles. 

1. A less then favorable circumstance (#understatement) would perhaps be a man or woman who, in his or her young life, has been a  victim of sexual abuse. It's hard to tell what is worse for this person, the terror he or she feels when it first happens, or the numbness felt after it starts to become ordinary? I have never been a casualty of such a repulsive act, but there are thousands that have. How many times can someone "go to a happy place," leaving their body behind, before their body loses value? 

2. Food poisoning. How many of you can relate to this one? Nausea, vomiting, chills, cramping, fever, diarrhea, cold sweats. Hours have never passed more slowly and when the first round of vomiting doesn't alleviate the grisly churn in your stomach, you know you're in for it. How did you even make it through one or even two days of hell? Part of me is sure that you tried to take your mind elsewhere, to distract yourself, to leave your body, if only you could in that moment. 

Okay okay, I'll stop with the gross scenarios, this isn't meant to be an explicit post about the unpleasantries in life; but do imagine how you cope with mental, emotional, or physical pain and sickness. If you are one of many who falls into the mind/body detachment category, we may want to rethink our modus operandi. After all, we do purport to care about our bodies, which is usually the reason for "leaving" them, we don't want them to feel certain ways. However, "continuing to pretend you have no body or no responsibility for your body is an illusion that keeps you from being a unified being, a person finally capable of keeping yourself safe from harm" (Gould, 120, Shrink Yourself). We must stop hiding behind narcotics, layers of fat, poor attitudes, alcohol, and other mood/behavior altering drugs, and get the help we truly need to cure the cause, rather than put a bandaid over the problem. 

Bandaids work, but before we know it, we're 80 years old and still have open wounds, with a life less than lived. I pray that we are all able to take the step and find the cure, it will be uncomfortable, but it is possible. If you don't know where to start, talk to me, I'll do my best to help. 

All my love, 

Morgan
  

How does one live this way?

Some people collect comic books, others, sea shells, but I, I collect hospital bracelets.

There was once a time when the medical world was simply an inconvenience to my life; a time when a doctor's visit was a mandatory annual physical, and I suffered most from trypanophobia (the fear of needles). Ah, how times change. Now, my shelves are lined by notebooks containing my medical records, food and bowel movement logs, medical bills, weight charts, symptom lists, medical encyclopedias, nutritional science books, books on chronic pain, books on meditation,  and countless bottles of prescription drugs. I average 1.5 doctors visits a week (if not more), and have my surgeon's personal cell phone on speed dial. The nurses and doctors at my favorite emergency room know more about what's going on in my personal life than most of my extended family, and always hope they never see me again (for my sake). I have had so many tests done that I often consider changing my middle name to "Pin Cushion," or "Guinea Pig." Trypanophobia is a thing of past, as I now show the phlebotomist the best vein for blood and hold the record for most tubes taken in one sitting at a Stanford Lab {17 tubes}. These days, I feel so at home in a place that used to be my hell on earth, except that now I know everything will be okay so long as I am there (#myworryfreezone).

Nearly every person I talk to about my health in-depth asks, "How can you live like that?" Simple: One moment at a time. After all, life is made up of thousands of moments. It is overwhelming to consider having to live in agony for the remainder of one's life, BUT if I just have to endure pain and sickness right now it becomes manageable. There are, however, many days I wish I could suffer acute pain, because that only lasts a short duration. It is the chronicity of my illness that makes it insufferable at times; not knowing when relief will come, or when a flare will strike again. I live in constant fear of sickness [especially publicly].

Distracting myself, though, is not the solution. The times I try to ignore the fact that I am indeed, a "sick" person, only makes it worse. I have found that instead of hating the pain, it hurts less if I love it. If I am patient with my upset stomach, or give attention to the serrated knives stabbing my pelvis, it does not pain me as much. To be mindful of the war waging inside me allows me self-regulate my angst and relax in the midst of agony. Pain and suffering are only what we allow them to be. It used to be that the fear of sickness impeded the progression of my life, a depressing reality; now my dreams are undeterred by my illness. Life itself transcends any ailment that tries to thwart my good spirits, so long as I live, I win.

For the desolate and dreary days, life yields abundant beauty. This beauty is my secret to happiness. I am not a thinker and it is rare that I contemplate deeply the matters of the world or dwell on circumstance, my physical condition has never allowed me to be that kind of person. Rather, I was designed to absorb all the beauty life has to offer. All my life I have been enchanted by the simplest of things: dandelion seeds dancing in the wind, the vibrant color of leaves changing in the fall, or trees dusted by the winter's first snowfall. The beauty of nature astounds me time and again; this beauty is my most intoxicating painkiller, my drug of choice. There are many 'things' to distract me from the pain, but there are few that can subdue it. Nature is most certainly one of them.

So. How do I endure a life so stricken by illness? I embrace life, for it is not guaranteed. I allow myself to be inspired, to be hopeful. And I make everyday my masterpiece.

I leave with you, a short video that motivates and inspires me:

With love,

Miss Morgan