Be Careful What You Wish For

(This was originally written as a guest post for a friend's blog Oklahoma IC & Pelvic Pain Support : http://ichopeok.blogspot.com/?m=1) 

Over time I have been fortunate to connect with a lot of people who share medical similarities to my own; these "aquaintances" have become my dear friends who share with me the burden of a chronic illness. While they have recounted their stories to me, I have noticed a trend: most of us have a "before" and "after." For some, the "before" is prior to the onset of symptoms, for others the "before" denotes life in anticipation of a diagnosis. Whichever it is, most of us think of life, and our disease, by these terms. "Before I was sick... abc...." or "since diagnosis....xyz." My story is a littlr different.

I never had the luxury, if you will, of a 'before.' My body has waged a civil war since day one, it just took me a long time to figure out who was fighting. To my knowledge, most wars* fizzle out before long; heck, the united states never fought in a war that lasted two decades, those wise guys. I'm going on twenty-four years and still fighting strong, at least I'm setting some kind of record (sense the sarcasm?). I suppose, however, that I got what I asked for. What on earth does she mean? Who would ask for a debilitating disease? Simmer down and let me explain. 

At the sagacious age of ten years, I did a school report on Helen Keller; what a woman, let me tell you! I was so inspired by her life's accomplishments, despite the fact that she was both deaf and blind that I aspired to be just like her when I grew up. Now, I realize there is no self-preserving way to become deaf and blind, but you get the idea. I thought that these obstacles [deafness/blindness] would serve as an incredible challenge in life and what greater way to change the world than to do so with less than others have. I wanted to make a difference, but I saw that to do so, we need a little push. Obviously, at the age of ten, my life was just not challenging enough, go figure, so I hoped that life would push and challenge me in a way that would make me "great," just like Helen Keller. Dear Ten-Year-Old-Morgan, be careful what you wish for.  

I have suffered from a 'bad tummy' my entire life, and I have the record for school tardies and absences to prove it! However, it wasn't until my early teens that my strength was really tested. Let's flash back: It was a warm summer night, I was a fourteen-and-a-half-year-old teeny-bopper wasting her summer days away like any unassuming teen does, without a responsible care in the world. Then, it hit me, hard! My stomach turned in knots, my intestines went into over drive, my lower back ached, my head throbbed, and I could feel my dinner looking for an encore. I was sweating out of every pore of my body. Hours of pain and sickness plagued me. Whoa. Let's never do that again. The next morning I woke up to the beginning of my first menstrual cycle. Misery trumped teenage awkwardness. Were they all going to be like this? Will I feel like I have the flu and food poisoning every time? Of course, these were questions I kept to myself. I was so shy and timid I couldn't possibly talk about my p****d, it was a forbidden and uncomfortable topic. So, naturally, I white knuckled the pain and discomfort until it was over. I was used to an irritable bowel and terrible tummy, so I didn't think otherwise. 

For years my symptoms continued to cycle through and intensify with new ones joining the ring along the way. By the time I reached college, regular class attendance was more of a struggle than ever. Forget about going anywhere the week before and during my period. No way, Jose! There were little ninjas inside my pelvis juggling knives with poor form, while burning coals danced through my intestines. I managed to hide my discomfort well in public until one memorable evening in 2009. While working as a personal trainer, I was instructing a client on proper technique when she said, "Morgan, are you okay? You keep grabbing your stomach, and it has gotten quite swollen over the last thirty minutes." 

Oh no, she can see the sick! There was no more hiding it. She told me I should see a doctor about it, and I finally listened. Shortly thereafter I saw my first gastroenterologist. He seemed to know exactly what was going on with me at every appointment; he would prescribe a new drug and I would have high hopes of a full recovery and dream of a life without pain. However, every time, he was wrong. It was clear that I was a difficult case, and also evident that my doctor was frustrated. I kept reiterating that my symptoms always worsened around my period, a fact which he chose to brush off several times until he couldn't figure out the puzzle and referred me to a gynecologist. 

Reinvigorated by a pair of fresh eyes, I was confident the gynecologist would be able to figure out what was going on. She did the standardized tests for my symptoms: blood work, pelvic ultrasound (super fun), and pelvic exam. "Good news, everything looks normal! You probably just have bad periods and need to stay on an oral contraceptive to calm them. Go back to your gastroenterologist if your symptoms persist, this isn't a GYN issue." I am so over this. I wish I were a man so I didn't have to feel this pain every month! 

After being shooed away from two different specialists, I went on a two week vacation (of which I was sick half the time), and started doing my own research and digging into the science. I stumbled onto a lead I felt was promising: Endometriosis. Could this be it? This sounds like exactly what I experience. I scheduled an appointment with my GYN again, who was not so pleased to see me. "Hi Morgan, last time we saw you we had referred you back to your GI doctor, is everything okay? Are you experiencing any new symptoms?" No, actually, I'm experiencing the same debilitating pain and sickness as before, only worse and more frequently. I did some research on my own, please hear me out, I know patients do this all the time, but I'm confident that I have endometriosis. "Well, all of your test results came back normal, you didn't have any markers for that disease, and the only other way to diagnose it is through an abdominal laparoscopy, which a pretty invasive procedure for an illness I don't think you have." When can we book the surgery? I'd like to get it done before fall quarter starts.

I went under the knife two weeks later, receiving a positive diagnosis for endometriosis. 

After surgery my doctor explained that she removed as many endometriotic lesions, adhesions and scaring as possible; however, there were a few areas she said were "impossible" to remove without risking my death. Seems like a good judgment on her behalf, what you wouldn't know is that if these areas had been left untouched, I would go into kidney failure, experience nerve damage, and my appendix would rupture. These were the "cons" that made the risk of surgery worthwhile. I could sit and wait like a ticking time bomb or jump out of the plane and hip my parachute deploys! Being the adventurous type, I jumped. 

I sought out a specialist in Endometriosis care who I could trust would do everything in their power to treat me; and that is just who I found. Dr. Camran Nezhat and his team at the Center for Minimally Invasive Surgery were deemed the "best" in excision surgery; after all, Dr. Nezhat pioneered the advent of the entire procedure, so I was fairly confident he knew what he was doing. Early in December of 2011 I called his office to inquire about treatment and was scheduled for a surgery 3 weeks later down in Palo Alto, CA (a 14+ hour drive from Seattle, WA). In meeting Dr. Nezhat my worries subsided as his calm and caring nature would put any worry at 

ease. Surgery was a tremendous success! All of the sharp pains and aches I had complained of were taken away, like magic!

Since then, being the devilish disease that it is, more symptoms in different areas, and some, the same, have returned. I will be getting another surgery with Dr. Nezhat later this summer to try and wipe it out again, and hopefully for good. In the mean time, I manage symptoms as holistically as possible; I keep my body fat percentage as low as I can manage, eat a diet that discourages the presence of disease, and manage stress and pain through exercise and relaxation. 

It can be a hard battle, but I just remind myself, "You asked for it! This is your challenge, so be great!" 

Advice for the newly diagnosed: 

1. You are not alone - do not isolate yourself! Reach out to others online via Facebook and forums for Endometriosis, these ladies are the most likely ones to understand how you feel. Be open and honest with your friends, family, and romantic partners so that they can learn and adapt to your lifestyle. If they do not know, how can we expect them to be understanding?

2. Do your due diligence: be your own advocate, do your own research. If you do not understand, even in the simplest of terms, what is going on inside your body, you cannot begin to know how to help yourself. Networking with women who have been and are in your shoes is an easy way to do research if you're not fond of or strong in science, so there's no excuse not do the best you can. Besides, feeling miserable all the time is not really an option, is it?

3. Find a specialist. I do not mean a doctor who lists "endometriosis" as one of their interests on their hospital profile. You need a nationally acclaimed specialist, do not waste your time getting surgery after surgery with doctors who aren't the best. I highly recommend the Center for Endometriosis Care in Atlanta, GA and the Center for Minimally Invasive Surgery in Palo Alto, CA. I have personally been under the care of Dr. Camran Nezhat for a year and a half and his expertise has been life changing. Besides, any physician who visits you in the hospital on Christmas Day two days after your surgery is one you want to have on your speed dial.

4. Cure naturally as much as possible. And by as much as possible, I don't mean "I can't be disciplined to exercise or eat better so I have to take meds and get a hysterectomy." Your well-being is worth any change in lifestyle that is necessary, so do not throw in the towel when it gets tough. Fuel your body with the nutrients it needs, and forgo those that will make your disease worse. Do not let endo win!

5. Avoid medication at all costs. I, personally, have tried SO many medications that I can't list them all off the top of my head. However, I will say this: I have felt way better OFF meds, than I ever did on them [and they were supposed to be helping me]. Most of the medications that "treat" endometriosis are directly affecting the hormone balance in your body, and screwing with the hormones can get messy. Be prepared for side effects your doctors don't always tell you about, and research EVERY drug before you every accept one. Look at the reviews patients have written about them and the potential side effects. If you feel that the pros outweigh the cons, then try the medication, but do so cautiously. Medication should never replace good holistic remedies [adequate sleep, a nutritious diet, plenty of water, an active lifestyle, and daily time set aside for relaxation, etc].

6. Read my [Morgan's] blog. I am a personal trainer and aspiring biochemist. I have more disease than just Endometriosis, which I have blogged about as well. I have a passion for helping others, especially those who have been unfairly plagued by a chronic illness. We can band together and fight these and be stronger than we ever would have without them. So I welcome you to follow my blog [here] and interact with me! I'd love to connect with you. You can email me directly on Facebook or comment on my blog posts.

Thank you all for reading my story! I look forward to hearing yours.

.: Morgan :. 

Stronger than ADNR's. (Part One)

(If anyone should feel offended or that I have attacked the usage of picture-quotations for inspiration, don't be. The current lock screen of my iPhone is this:

See, I use them too. Just unobtrusively so.) 

 I received an email message recently that started, "Morgan... I dunno how you do it." Neither do I! Wait, do what? WHAT was the it, I pondered. Shortly thereafter, I determined the it did not matter, as ultimately the 'it' for everyone denotes life, and we are all ever so curious as to how one another does life. I mean, this is why reality TV has become so successful and commonplace, is it not? We want to know how the Kardashians live day in and day out, and what a southern bayou family would do with a huge windfall from a duck calling device made in a family shed. Thus, in light of modern pop culture, it was easy to understand his question: how do I do life? Why do I do it the way I do. 

Let me tell you, my first inclination, bred from smart-assery, was to say that it was from the encouraging lock screen pictures I keep on my phone and inspiring pictures I see on my instagram feed. Hashtag: I would be lying. The captital T-truth of the matter, is that my sheer existence is both an accident and a miracle, and the how and why I live the way I do has nothing to do with my own self-discipline, motivation, or magnificence; no, it is due all to the shining example of my three parents: mother, father, and step-father (deceased). 

Part One: The Mother of all Mothers. 

Let's rewind. Two months prior to my conception, my mother was pregnant, in her first trimester, when suddenly her morning sickness dissipated. This was not was not right. She saw her doctor, whom confirmed that she had lost her child. Emotional turmoil and devastation aside, there is still the physical task of removal. My mom has always opted for a more natural approach to life, so she declined having a D&C and decided to wait for the fetus to miscarry on it's own. Sure enough, within a week, she  began the process naturally, however she became very ill as her body (stronger than aggregated diamond nanorods) held on to the placenta and she nearly bled to death. My father had already left for the hospital to drive the lost fetus as my mother's life slowly slipped away at home. My father made it home just in time to drive her to hospital. Ten months later, I was born. My mom was forty. 

Here is just one instance of the triumphant example my mom has been in my life. If ever I have reason to give up or give in, I should only think of her, the woman whose mere delivery of me to this earth was miraculous.  

Here's another little didactic story. As it were that my parents separated when I was an infant, I had a single mother of five, whom found a way to be both stay-at-home-martha-stewart-mother-of-the-century by day and career-woman by night. Yes, I know what you're thinking: how? Seriously, I still don't believe it. She must have had a clone. What kind of human being can work from 8p until 6a and get woken up by her daughter at 7a for cartoons and still welcome her in for a snuggle? What kind of full-time working mother of five still has time to write love notes in her children's lunches, deliver flowers on their birthdays, sew their halloween costumes and holiday dresses, sit in the front row at their choir performances that they lip sync the entire time, and be the 'hot chocolate mom' at all their soccer games. And whose mom has time to listen to every story or essay their child has written, to every piano song ever attempted, to every speech ever delivered, to every favorite passage from books that they've ever read? Who? My mom. 

The point here is not to brag that "my mom is better than your mom" (but, if you've met the woman, you already know that). The point here is that my mom is my hero, because she is well-adjusted. She is the only human being I know on the face of the planet who is completely and utterly free of the default human setting that "I" am the center of the universe. By way of example, she lives with a simple awareness of others, and makes little sacrifices for them over and over without expectation or exception. This is how we are to live. This is why I live the way I do. 

I love you, Mom. 

Sick and Selfish

On a sleepless night a few weeks ago, I watched the movie “The Man in the Moon,” to distract myself from the pain I was feeling. While I laid there, brooding in my pain, the protagonist’s father said something to her that moved me:

“If you get so involved in your own pain that you can’t see when someone else is hurting, you might as well crawl into a hole and pull the dirt right in on top of you ‘cause you’ll never be any good to yourself… or to anyone else.” – Matthew

WOW. If that isn’t a sign from the universe, then I don’t know what is, I thought to myself. Guilt set in; years of it. I have been so involved in my own sickness for so long that I have been no good to anyone. It was right then and there that I decided to begin making a sincere and conscious effort to see, acknowledge, and act on the pain carried by others, rather than just my own. Now the question was, how? How do I change a major character flaw that has been deeply ingrained in my being from years of pain and sickness? I thought on it the remainder of the movie, without coming to any kind of resolution or plan of action.

It was after the movie, while listening to music, that the answer found me. I shuffled the music on my iTunes library and the first song that came on was by none other than Nirvana. Nirvana! That’s it! I suddenly remembered a passage I read from a Buddhist inspired book, How to Be Sick, that spoke of this stereological goal within Indian religions; I grew to understand Nirvana as the state of being freed from suffering, to have a peace of mind, cultivated by ‘sadhana,’ a spiritual practice where bondage becomes liberation.

Sadhana is quite literally “a means of accomplishing something” (A Practical Sanskrit Dictionary) It is something which you want to do, have to do, and which is being done by you. Living beyond my pain and discomfort would be by sadhana, my self-enrichment, my masterpiece.

It is my prayer that I can be and continue to be sick and selfless.

Here goes.

MR Enterography

En•ter•og•ra•phy

noun

A treatise upon, or description of, the intestines; enterology.

Well folks, I went in for my first MR enterography today to take a better look at my small intestines. I've been having an unreasonable amount of digestive trouble lately and my gastroenterologist wanted to get a look at the entire gastrointestinal tract. All I knew going into the procedure was that it would involve the use of magnetic resonance imaging (MRI) and that I would have to drink barium sulfate so that my intestines would be more visible on the imaging. Now, let me tell you what really happened. 

I go to the University of Washington's Digestive Disease Center to see my gastroenterologist, Dr. Timothy Zisman; a physician whom all other doctors should aspire to emulate. He is clearly smart, funny, forthright, compassionate, and persevering. He apologizes when he doesn't have an answer for me, but promises not to give up. He is not abrupt, callous, condescending, or detached. It is obvious he went into Medicine to help people, and works hard everyday to bring comfort to his patients. After conducting an endoscopy and colonoscopy earlier this month, Dr. Zisman could not find anything that would explain the symptoms that I have been experiencing, thus, his next step was to order a MR Enterography.

The radiology department at the University of Washington called me last week to schedule my procedure.  I showed up at 1:00pm today and the registration desk gave me a funny look and said "Welcome! You're quite early, though..... but wait. Your check-in time is listed as 1:00pm. I will double-check with the back." The receptionist made a phone call, I was a hour and fifteen minutes early. Joy. They did kindly validate my parking for the day and offer a free coffee pass to the espresso bar. I left the second floor dungeon and killed time in the medical center's lobby. 

At 2:15pm I returned to the registration desk greeted, warmly, by miss Bonnie Anderson. This woman is a champion of hospital hospitality; I hold her in the highest regard by the way she treated me. Bonnie was warm, apologetic, understanding, funny, complimentary, helpful, and sweeter than sugar. After check-in  another sweet nurse took me back to a room to get changed. I would get a sexy hospital gown and pants, complete with two huge gaps in the crotch. Hey, at least I got pants, right?  

I put my things away and was shown to a little room with three walls and a curtain as the fourth, open to the hallway. There was an oversized, faux-leather-wrapped arm chair with one bottle of barium sulfate waiting on each side. Under each bottle was a hospital issued towel and bendy straw (good call on the bendy straw, UW). I had 45 minutes to consume 900 mL of "berry-flavored" barium sulfate; I was not allowed to chug it, just sip slowly. "Savor it," joked one male nurse. Ha! I must admit that throughout my entire experience today, the service I received from all of the hospital staff was better than a 5-star hotel. They treated me like a princess, a sick princess. 

When I was just half way through my first bottle of barium, a female nurse sat down next to me and said eagerly, "Are you the one I get to start an IV on?!" I looked at her, straw hovering on my lips, with a look in my eyes that colored her stupid and said firmly, "No." She looked a little shocked, "Oh.... Well.... Let me go check!" Sweetnursenumbertwo smiled and walked away. Silly woman, I'm getting an MRI, why would I need an IV, I thought to myself. I relaxed back in my seat, sipped my berry mocktail, and joked with the technicians as they passed, "How's your cocktail?" one tech joked. "Delicious, do you want some? I've got two bottles!" I jested. Another ten minutes must have passed and sweetnursenumbertwo hadn't returned, I was home free, I didn't need an IV. All I had to do then was finish my strong smelling, moderately poor tasting thick beverages and have fun with the staff members until my scans; I even enlisted one technician, who we'll call Tosh, as my body guard. It was all fun and games until sweetnursenumbertwo pushed a cart full of alcohol pads and IV starts in my direction. Gulp, uh oh. I was not prepared for this. Luckily, I'd been drinking a lot of water this week so I wouldn't be hypovolemic.  Sweetnursenumbertwo smiled as she approached, "Morgan? I didn't think I was wrong; when I see someone drinking the barium cocktail, I know they'll be needing an IV to go along with it for vascular contrast." I tried to force a genuine smile in return, "Sorry I turned you away, I didn't know a MRI would ever require an IV for an imaging study; I thought that was just CT scans." "Nope," she said, "we have to have a line in so that we can inject contrast and glucagon into your vascular system; it gives us a better picture." Huh, well, you learn something new everyday. You'll be okay. You'll be okay. You'll be okay. This will all be over soon, I chanted in my head. I chewed on my straw nervously as sweetnursenumbertwo asked which arm is best. "Right. Never left," I answered. I hesitated, then asked, "Hey, do you have a butterfly IV start you can use? Those work best for my infantile veins." She looked a little confused, and then went through the drawers of her cart and found a butterfly start. No way! I didn't know they had butterfly IV starts, all this time I'd been senselessly suffering. She held up the beautiful needle and attached tubing with it's cute little yellow "wings", "Okay, so we do have a butterfly start, but I'm not very experienced at using them; however, I can see if Kirby can do it." 'Not experienced?' Lady, back away from my veins with that needle. "Yes, please! That would be great. The more experienced the better!" Shortly thereafter I was greeted by Nurse Kirby, the IV ninja, as I call him. He found that the veins at my elbow hide behind my nerves, so he gave my right hand a few flicks and then stuck me. I didn't even feel it. "Oh no," he said, "I'm sorry, but I think I got it on the first try." Relief. Best IV start ever! Looks like this will be smooth sailing after all! 

I got my bodyguard, Tosh, to open the second bottle of berry mocktail for me and sipped away as he told me funny imaging stories from patients past. I had 200 mL to go before I'd finished my liquid chalk, when technician Kevin took a seat next to my throne, "So we are just about ready for you, a nurse will be over shortly to give you the intramuscular shot..." I stopped him there, "Shot?" What shot? Why is everything a surprise today? I was not given any details of this procedure, should have done my homework.  "Yeah, it is a shot of glucagon to slow the movement of your intestines so we can get better quality photos." Oh, joy. 

Within minutes a cheery, auburn-haired nurse drifted over witha long needled syringe. "Okay, Morgan, you have a couple choices, thigh or hip?" Butt, always go with the butt. "Hip!" I stood up, dropped my hospital pants and just moved my lace panty strap to maintain some dignity. Within seconds, it was over and done with; such a small gaged needle that I didn't even feel a thing. Getting my pants back on with one hand was interesting, though. Don't tell my mom, but I used my teeth to tie them. Sorry, mom. 

That was it, I was ready, the MRI room was visible from my royal armchair. Sweetnursenumberone came to take me to the room, "We are going to the 'mobile' MRI unit... you'll want to wrap that blanket around you, we have a long walk and are going outside." But, but, but... there's one RIGHT THERE! I want that one! The nurse was taking me out of the comfort zone I'd established with the staff in the main radiology department. You'll be okay. You'll be okay. You'll be okay.  

As we walked through the stark hospital hallways, we had to hug the wall for a team to pass with a patient in a bed with way too much equipment attached to be healthy. It was an elderly man. He had been intubated and I could see the discomfort in his face, eyes squeezed shut, hands gripping his blankets. Wow, there's some perspective for you. I could be in worse. I'm just in for a routine, inconvenient procedure. 

The technician who would be conducting my actual MRI had a unique first name, Boo Boo, seriously. She was a twenty-something thin asian woman with her hair pulled back by multiple small rubber ties. I worried she wouldn't be as careful and attentive as Kirby had been with my IV. I was wrong, Boo Boo was very meticulous, careful and calming. I worried that my IV would get caught while moving through the small cylinder, but don't worry, it didn't. Boo Boo attached a breathing sensor to my diaphragm, a square padded coil to my abdomen, and then strapped it all together like twine around a stuffed chicken breast. Most would feel very uncomfortable being so confined, but I was as comfy as a baby swaddled in a warm blanket. Ear plugs were inserted to protect my hearing and then oversized headphones playing country music on top of that. Bliss. I was ready for a nap. 

It was approximately a 25 minute scan, during which I had to take 20 or so deep breaths in and out and then hold my breath for about 10-15 seconds. This proved to be a challenge with my ailing lungs; I thought I was going to suffocate, by choice. I didn't want to mess up the scan; I had done so much in preparation, I would tolerate almost anything to finish. Little did I anticipate what I would have to tolerate to finish. Fifteen minutes in I started to feel stabbing pains in my groin and pelvic region. Oh no, oh no no no. Is this supposed to happen? Or is this just my endometriosis acting up? Stab. Cringe. Gasp. Yeppp, that's the endo alright. Great timing. I gasped during one of my breathless pictures, ouch!! The stabbing pain was getting worse and more frequent, and I couldn't even curl into the fetal position like I normally would. I just had to take the pain. Tears streamed down my cheeks. You'll be okay. You'll be okay. You'll be okay.

Boo boo paused the imaging to add the final glucagon and contrast to my IV from the extension a nurse had placed. "Okay, Morgan, it will go slowly, and I can stop it if anything feels uncomfortable you just squeeze the alarm. Here we go." It felt like she pushed shards of fiery glass into my veins; I yelped. Squeeze squeeze squeeze, BEEP! BEEP! BEEP! The alarm sounded. She stopped. Between my groin, pelvis, and veins, a steady stream of tears fell from my cheeks. I could tell Boo Boo felt bad. You have to finish, Morgan, just finish. Boo Boo administered the contrast manually, it only burned a little, it was tolerable. We finished the last 5 minutes of the scan with 10 more breath holds. Victory! I was proud. I made it. Done. 

Tosh took me back to my royal throne and removed my IV and gave me a hot pack for my hand. A thick cloud of fatigue loomed over my head. Work is going to be roooough tonight. While in the changing room, I began to feel nauseated. Maybe I'm just hungry. I slowly made my way back to my car, it was as I fell into the driver's seat that I didn't know how I'd make it home. My intestines were cramping, my stomach felt inflamed, the nausea had worsened, and my pelvis was still being attacked by ninja stars. You'll be okay. You'll be okay. You'll be okay. I cancelled my work for the evening and just set my sights on getting home; mission: bed. 

Traffic. Was. Terrible. 

GPS estimated a 60 minute commute. SIXTY?! I will explode. I tried to avoid the freeway, but I ended up on back roads in the ghetto that weren't moving and my sick-induced road rage would probably get me shot. I found my way to the freeway and messaged my dad, "ARE YOU AT THE OFFICE?" He was. Thank God! "Leave the door unlocked - I'm coming and I'm sick." I broke more traffic laws than I can count on one hand (sorry, Mom) to get there. Never have I run so fast in flip flops to get to a bathroom. At least I made it this time. 

My dad's office offered temporary relief. Still, hours after the whole ordeal my intestines are still gassy and cramping, I am feverish and swollen head to toe, and my pelvis has yet to let up on the civil war. 

This was not the day I had expected, but I survived. 

I wish that I had been more educated on what to expect today so that could have arrived more prepared. To my audience: always get the facts. Know what you're getting into, and plan for the worst. 

I am SO thankful for the amazing group at UW that took care of me today, but I would happily never drink barium or get an IV ever again. 

Just another day in the life. Thank you for reading my story. 

- M

I'm sick, and you expect me to exercise?

mo·ti·va·tion

noun

the reason or reasons one has for acting or behaving in a particular way 

A friend of mine reached out to me and asked how I stay so motivated to exercise despite all of my health ailments.  The truth of the matter is that I'm not always motivated, I don't always want to go or even feel compelled to go workout. I just go anyways. 

Everyone struggles with finding the motivation to get a workout in, sick or healthy; I would like to believe it's both easier and harder to find that motivation when you're chronically ill. On the one hand, if you've just laid up in bed for days on end and you're finally feeling like a functioning human being again, you want to take advantage of all of the things you physically couldn't do for the past several days; namely, exercise. On the other hand, when you've been laid up for days on end, you've got a lot to catch up on, and if exercise isn't at the top of your priority list then forget it, you're not going to do it.

Like time and money, our energy is a currency, and we only get so much (even less if you're chronically ill). How we spend it is directly proportional to our priorities in life. Some of these priorities are more a necessity than a choice: basic hygiene, the human need for social interaction, financial stability (an income), and nourishment. If your body is working hard just to keep itself running, your energy will be nearly drained once you've achieved all of your necessary "to-do's." Beyond mere survival there is not much room for extracurricular activity so, we must choose wisely. There are easy choices like, sitting around watching TV, going out to share a meal with friends/family, or cleaning your house, etc. These are the type of activities that, when devoid of them, make you feel deprived; whereas, for the sedentary life, if you go without exercise, you don't feel like you're missing out. It is all about our priorities and constantly reminding ourselves of them so that we don't forget what they are. Trust me, it's easy to let your priorities slide, and it takes effort to maintain what you once decided was truly important to you.

Here are some of the ways I talk myself into working out when I don't "feel" like it:

1. Promise yourself you can skip tomorrow if you commit to today. I am the queen of procrastination when it comes to quitting.... "Nah, I'll just quit tomorrow..." "Next time, I'll quit next time."

2. I can't skip the workout I need the most; it's always the one I don't want to do. For me, my abs have been weak ever since my last abdominal laparoscopy. I wasn't allowed to directly workout my abs for months afterward, and by the time I was able to, they were back at square one. My motivation to strengthen them had waned, and I never looked forward to my ab exercises [correction: I still don't, but I do them, because I need to].

3. Have a plan. If you're like me, making plans is hard, because you're at the mercy of what your body will allow you to do. That was a big deterrent  for me for a long time. I knew I wouldn't be able to follow a program, so why should I make one?! I soon learned that without a plan, there was no urgency to workout, no reason, nothing to "check off." Have a plan. Stick to it as best you can.

4. Feeling tired? Just say you'll workout for "10 minutes" [or any arbitrarily low number], odds are that your body will be energized by the exercise and you'll be more likely to finish what you had originally intended to do. I use this one ALL the time, works like a charm.

5. Find a mirror, strip down and look are your nude self, are you satisfied? Do you look strong enough? Fit enough? If yes, then you can stay home.

6. Troll youtube. When I am not feeling motivated I turn to youtube to watch videos of other athletes; I am inspired by their level of fitness to at least try to take one step closer to achieving the physical feats that they have.

7. "If I workout today, I haven't used up another rest day." Especially when you've just been "resting" for days on end, your muscles should be fresh for a good workout!

8. Just go have fun. Don't feel like doing the workout you have planned but don't want to melt into the couch in shame? Then do something that's fun, whether that means going to the gym and trying all of the weird machines or exercises you've been wanting to but haven't incorporated into your routine OR grabbing your roller blades and cruising around a lake. Don't forget, it doesn't matter how slow you're going, you're still lapping everyone on the couch.

9. Reward yourself. Not with food. I have to earn my TV time: One minute of physical activity equates to one minute of TV time. But I can't take out TV credit, this is fitness, not America; our health does not accept IOU's.

10. Why don't you want to work out? Is it because I haven't prioritized my goals? If my health isn't a priority, I may as well cancel my gym membership and save some money that I can now spend on Twinkies. ;-)

11. You will feel better when you're done. It will suck on your way to your workout, and will probably even suck during it, too, but dinner always tastes better after a good workout! Woody Allen said it best "80% of success is showing up."

12. Lower your standards. Not every workout you do has to be your best one; it's okay to just go in and do the sets and reps you had planned to do and not be amazing. When I do this, it's motivating to do that workout even better the next time.

13. Look at photos that inspire you to action. I am most inspired by old photos of myself when I was feeling really fit, and if I'm not there now, seeing the picture makes me want to get back to that place, or better, as I remember how great it felt!

14. Get some new tunes. Theres nothing like updating your workout playlist that makes you want to go use it!

15. Make an appointment. If you are really struggling with all of the above, invest your hard earned money in a personal trainer and make an appointment that you have to show up for. As a personal trainer myself, I know that a majority of the time, my clients are only workout that day because they had an appointment with me, and that's okay. I show them a good workout, and hopefully, a good time. I try to make health and fitness fun, so that it's not a drag; I know the exercises my clients love and those they hate, and if they are having a particularly bad day, I do the exercises they enjoy, it can turn their entire day around!

Most of the workouts I didn't want to do ended up being my best. 

I invite you to leave a comment of what motivates you to workout when you don't want to as well! :) 

Until next time. 

M

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!