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

Whoever said that pain is temporary....

....didn't tell the whole story.

Lance Armstrong, cancer survivor, famously said, "Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever." Sure Lance, you are right, pain does not have residence in every moment of our lives, it increases and decreases in severity, and in the most precious of moments, it does not exist at all. If only it was pain itself that was the most unnerving, but it is not. Pain is bearable; it is the indefiniteness of pain that is unsettling. Not knowing when this unpleasant feeling is going to leave you is utterly demoralizing. And on the rare occasions that you are without pain, you cannot enjoy it, because you are too fearful of how long you have until the pain is back. For all of us who are chronically living with pain, we know it is a vicious cycle, dominated by the existence and non-existence of sheer agony.

Personally, I find that a lot of my friends and family try to understand what I am going through; they try to know what my life is like. I would never wish for anyone to be able to know what I experience; for one to know chronic pain and illness, they must experience it personally, and there is no individual I would have suffer that kind of existence. It is a lonely battle that I fight daily. Pain is indescribable. It is a feeling, with an individual capacity that no two people share. My pain will never be the same as your pain and the scale by which it is measured is relative. Pain is an experience. It is motivating, not in the inspirational sense, rather, it causes us to avoid similar experiences in the future and protect ourselves from further damage. Pain is as much psychological as it is physical; it's intensity can, at times, be tempered by a pleasant diversion (be it an analgesic, a friend, a funny joke, a good movie, or a beautiful song). There are times when it is so strong that it modulates the experience of your life; for me, I have found that the times when I am in pain, I have trouble concentrating on any one thing or remembering what went on during that time. It is almost synonymous to someone "blacking out" after consuming a great deal of alcohol, and being unable to recall prior events. Yet I, without any drugs or alcohol at all, have the same loss of memory, without any help. For a while, I thought that I was becoming rather stupid, being unable to recall the most simple of thoughts; until I realized it's relation to my condition. One advantage is that I can watch a new movie recurrently and still feel as though I'm seeing it for the first time. Splendid! There are few advantages, but every moment that I feel pain, I know that I am still alive, and that is enough, because life is the greatest uncertainty. Keep living.

It's only a shadow, Peter Pan.

The stages of accepting the reality of having a chronic condition are quite childish in nature; like children, we hold dearly a time in our life that we never wish to leave behind. In the beloved literary fantasy Peter Pan, a shadow was much more than a dark spot on the ground; it had color, animation, texture, and shape. However, it is comparatively light and insubstantial to the human's shape it resembled, and ultimately it was just a semblance of the true being. Likewise, with the passage time, the chronically ill become a semblance of their former, "healthy" self. In Peter Pan, J.M. Barrie intimates that no ever fully grows up, rather, it is a process that continues through life. Similarly, no one ever fully welcomes a life ridden with disease; it is a condition we adapt to over time.

I have always been told never to compare myself to anyone else, which I don't, that wouldn't be fair. However, I am told to compare myself to who I was yesterday. Well, this used to be a great measurement of improvement, until the "me" of yesterday was continually stronger, better, faster, healthier, and more energetic than the "me" of today. It has been a rather discouraging reality, coming to terms with never being who I "once was." This was until I purchased a book at the Barnes and Noble in Oceanside, CA this summer [ Inside Chronic Pain ]. The author shares the same struggle of self-comparison. She had looked at it the same way I have; always striving to "get back" to being the "same" person we were pre-accident or pre-disease. Ms. Heshusius opened my eyes to a very transcendent notion: Instead of trying to be the same person I was before I was ill, why not be the best person I can be while sick. I have been waiting to "get better," "find a cure," or "get past this" until I realized this is not going away. *LIGHT BULB* The minute I comprehended that fact, I was relinquished the duty of trying to be the "sick-free" Morgan. Instead, now I can improve upon myself to be the best I can in spite of my condition. I am no longer the shadow of who I once was, but rather casting a new shadow from my ameliorated self.

Chron•ic: (adj) persisting for a long time or constantly recurring [of an illness]

It may be a tad strange that I title my first post with a definition, but in my experience, it is crucial (from the latin crux: the decisive or most important point at issue) that anyone enduring or trying to understand chronic illness, must fully acknowledge and comprehend the "chronic" part. Those of us who live with a chronic condition/illness/or/disease are aware that we do not have a flu or cold that we just need to "ride out;" we understand that whatever it is we may be battling will persist for a long time and/or constantly recur. What's a struggle for us, is trying get our friends and family to mentally grasp that we aren't necessarily going to "get better" or "be cured." There will be good days, which we are thankful for. There will be bad days, which we endure. And there will be awful days, which we survive.

We are running a marathon, not a sprint. Thus, the way we are cared for tends to be different than if you were to be helping out a friend with a bad hang over or the sniffles. When dealing with an extended period of sickness, we tend to value the companionship, more than the bowl of soup. We want to see the bearer of our prescriptions more than our need to take them. And anyone willing to stay by the side of one who is chronically ill, does not have an easy road ahead of them, but they are a ture blessing. A blessing that we, at times, feel unworthy of. More often than not, we cannot give back all that we are given, and that is a hard truth to live with. In some cases, we might isolate ourselves from others so we do not feel as though we are taking what we do not deserve. We know that we will be battling what ails us for the rest of our lives, but this concept can be hard for others to grasp. With the passage of time, our disease becomes our way of life - we just hope that there will be loved ones there to live it with.

My name is Morgan and I am chronically ill.