The next step in healing – getting a life

I had an interesting and ultimately encouraging conversation with a friend today. I said, for perhaps the 20th time “I just feel like I have no life. I am at home often, managing health issues from sun up to sun down, and I feel like that basically sums up my life. At times I don’t even know how to talk to people anymore if it isn’t about health stuff, and I hate it. I don’t want to be like that.”

My friend Rachel, who knows more about my health and life issues than possibly anyone else, began a very helpful monologue. I needed a “talking to.” She explained that I do actually have a life and a ministry, even though its not what *I* had planned for myself.

“I love talking to you because you tell such great stories about how you see God working in your life and how you have been involved with reaching out to other people. Your stories are often funny too. Don’t downplay what you have been able to do! Its a lie to say you don’t have a life, and its a way Satan can try to discourage you. You bring Mike to church every week, you teach him life skills he hasn’t learned, you take Mary and Mike to the grocery store, you sit and talk to Charles, you send long email responses back to people who email you from all across the globe who have contacted you looking for support regarding gutsy problems…and you do it all even though you are more often than not in significant pain. You are at a point now where you are trying to find a balance with all these things in life, knowing that you can’t talk about it or think about it ALL the time, and that’s a good place to be – that’s where you are growing. A lot of people really care about you and you miss some significant things God has done and is doing in your life and those around you when you disregard and fail to talk about these other parts of your life. They aren’t insignificant. You have been on SCD and fighting to win the war with your guts for over a year and a half (longer if you count pre-SCD battles) and despite all the energy, pain, and hard work you’ve put into that, you still always have taken time for other people. Before you knew Mike, you were friends with JR and that took a LOT of energy. And that was while you were very sick too. You spend time with people even when you know its going to cost you – it may cost you rest, you may be hurting so much you are trying to make it through a conversation and pay attention or wondering if you can continue the conversation without excusing yourself. But you do it. There is a lot of fight left in you, and in some ways I think its even stronger now than its ever been.”

I needed the correction and the pep talk. Rachel encouraged me to talk about these aspects of my “real life” more with friends and online. I had come up against a writers block for my http://www.NaturallyGutsy.com blog, and Rachel encouraged me to write more about how life moves on even when you have a super long list of hard diagnoses, how I still stay active in spite of the challenges.

As she talked, I realized that this very thing is the next step in my healing. Its been a consuming year and a half dealing with tough health issues. No, its been a consuming 10 years dealing with tough health issues!!! Who am I kidding?  Lol. Though I have another whole ball of wax to bounce around with my new diagnosis of CRPS, and that too feels utterly consuming, I know it may become less consuming in time as I learn to fight and manage it more appropriately.

In fact, when I started SCD a year and a half ago, I didn’t really think I would get to the place I’m at now. I mean, God and http://www.SCDLifestyle.com have brought me gut freedom I’ve never had before, I’ve learned to really cook great meals now, and I am healthier in mind and body generally than I’ve ever been. SCD isn’t so stressful to me now. I know my allowed foods by heart, and I also have a solid base for my super safe foods which I can fall back on when the gut gets wonky. So while its still a significant amount of work on my part with frequent marathon cooking days and planning ahead, SCD is freeing rather than stressful to me. I don’t hate my kitchen nearly as much. My attitudes towards and about food are much more positive and most of the time I look forward to eating. Couldn’t have said that a year ago! Gut pain is mostly controlled.

Before my CRPS flare, I was doing well at getting out more, being more active, and doing lots of thing I had not done in AGES (roller skating while using my rolling walker, for example!). My setbacks now are more often CRPS related than gut related. And if it wasn’t for the CRPS, I would still be doing more nowadays.

I do have a mountain to climb with the CRPS diagnosis. I need to tackle it just like I’ve tackled taking charge of my gut. So in its way it will be more work than gain for a good while, just as my gut was. But eventually I might get back to that happy place where I’m able to do more in the future. One never knows.

But in either case, I think Rachel is right – one of the main goals to achieving health while still responsibly managing these diseases is to be grateful to God for what I do have in life by properly recognizing its significance. This next step in my healing is more mental, spiritual, than it is physical. And yet its these mental and spiritual changes which I believe can have the greatest impact on our physical wellbeing (think of the connection between stress and physical illness!). I do believe its possible for us as gutsy people to continue to live healthy lifestyles with our minds, bodies, and relationships as we put forth the extra effort it takes to achieve what is most important to us. The fact that we do try itself is a testimony to others of the human spirit and God’s life-giving power.

For me, I choose to put significant energy into relationships and taking time to be there for people. I’m also looking into some new ways to use my creative talents to drive my disability-adjusted career goals.

When life throws a curve ball, we adapt. We move on, doing what we must to take responsibility for those things which are naturally ours to manage. We keep choosing what is important, what we will fight for, and we commit to it, grabbing the bull by the horns and pushing forward come rain, snow, sleet, hail, or falling pianos. When another curve ball comes, we repeat the process by adapting again. That’s life.

I would love to know how you think about your new and different life post-diagnosis or post-SCD. Are you tempted to feel like you don’t have a life? What are you using as your definition of “having a life”? What meaningful activities can you engage in or recognize you are already doing so that you can more healthfully appreciate your life?

Gutsy Girl

Got Gutsy? (What does it mean to be Gutsy?)

GOT GUTSY?

When I use the adjective “gutsy” to describe people, I’m not just thinking of the traditional “wow that guy is gutsy!” to describe someone who isn’t seemingly afraid of anything and who doesn’t hesitate to take risks.

No, the word has come to mean much more than that to me.

I use it lovingly yet humorously, enjoying the double-meaning play on words when considering the fight of those who have gastrointestinal diseases.  

The dictionary uses these definitions and synonyms for the word “gutsy”:  
*  having a great deal of courage or nerve
*  showing courage, determination, boldness and spirit
*  daring, courageous, brave, fearless

And battling a serious GI illness day in and day out challenges of gastrointestinal disorders requires all of the above qualities in significant measure.  There’s a very good reason ‘GUT’ is part of ‘gutsy’!  We’ve definitely got guts (and those of us with visceral hypersensitivity can feel every square inch of ’em too)!

For the person who has a GI disease or disorder, social taboos make talking about their suffering very difficult and “socially inappropriate”.  This brings a heavy weight of isolation into the gutsy person’s life.  Gutsy people often feel the need to hide their symptoms (flatulence, incontinence, gurgling digestive tract, diarrhea or constipation, reflux, etc) from friends, coworkers, strangers, and sometimes even family members.  Life begins to close in and center around the toilet and the kitchen table.

In my definition of “gutsy,” you don’t have to be fearless; you just have to be wise and proactive.  Fear can tell us that something is wrong; it can be a protective mechanism.  Denial for a limited time may also be protective.  But there comes a point in time when a truly gutsy person will face the reality of how their symptoms are impacting every aspect of their live and the lives of those around them and then seek help.  Admitting there is a problem can be half the battle, especially with something so socially taboo.

As a gutsy person, I’m not afraid of confronting social mores to increase awareness so that the physical and emotional challenges of gutsy people may be as accepted culturally as the daily challenges we all face as humans.  Though daily challenges will be different for everyone, I want both healthy and sick people to know that it’s acceptable to “be real” and speak factually about what you’re going through and invite other people into your life as your support network.  (Which doesn’t mean we should expect everyone else to understand or even agree with our challenges…but the freedom to share and be accepted and supported should be universal.)

Seeking help.  Ah, here’s where things can get really sticky for gutsy folks.  It would be nice to say that after seeking help one would get a proper diagnosis followed by effective treatment, but many people who have GI illnesses (especially certain Functional Motility Disorders, complex and rare diseases and diagnoses like IBS which aren’t easily seen with current medical tests) will see a long list of doctors for many years who they “hire then fire” because they are told that “it’s JUST IBS, you need to eat more fiber” (which is really BAD advice for most people who have IBS…) or “You have Celiac Disease – go gluten free and then you’ll feel all better in about a year” or “There’s nothing more I can do for you; you’re just going to have to learn to live with it”.  White coat syndrome isn’t difficult to comprehend when a desperate and understandably depressed patient with every GI symptom under the sun (and then some) comes into the doctor’s office only to leave with nothing but a note in their chart highlighting his/her “hypochondriasis” (which will be seen by all future doctors) and no more than negative one solution to his or her 24/7 pain.

Therefore, a gutsy person is a person who is willing to seek out information and make educated decisions about their own personal health care.  If you’re gutsy, you realize that your health isn’t going to be turned around in an instant and that it’s going to take hard work on your part – you accept responsibility for yourself.  AND YOU SEARCH for answers, even if it takes years and years.  Pain is a strong motivator, isn’t it?

Eventually, a gutsy person becomes confident in listening to his/her own body, interpreting its needs versus its unhelpful cravings and making decisions that lead to reaching their health goals.  Slowly, sometimes not-so-steadily, but making progress nonetheless.  The answers don’t usually come easily, but they are won through dedication which builds character.

With the battle of chronic yet invisible pain may come an equally invisible but strong sense of shame, especially when a person with a GI disorder doesn’t have a strong and positive support system (friends, family, doctors).  Remember that doctor’s note in the patient’s chart which said he/she was a hypochondriac?  Even if the patient never reads his/her chart, the point was made clear in interactions with others – “the pain is in your head”.  Guilt, shame, self-doubts, and the gnawing question “Am I just imagining or making up the pain?” may result and shake the person’s confidence in every area of life.  The pain is so real, yet so impossible to fully describe to anyone else who hasn’t had it, and the social taboo-ness of this invisible pain makes it all the more isolating.

It takes incredible courage to honestly confront questions such as “Am I imagining this pain? Am I being lazy or letting myself off the hook too easily? Am I someone who can manage and show love to my family well while fighting this disease?” and the process in itself is painful.  But when coming out on the other end, the gutsy person will learn about him or herself and gain hold of a few more truths he or she can “speak to themselves” in defense when the lies, shame, and guilt come rolling in.  Maturity often grows in times of suffering.

Being gutsy may show you who your friends truly are.  You know – the loyal ones who are there when the bottom falls out again and who, though they don’t fully understand your situation, share their love and care and make you feel special and safe.  Gutsiness may also expose who your true friends are not – the ones who run when you let one rip…then again, you might feel like running away from yourself too 😉 so don’t judge too harshly….

It also takes courage to make it through each and every day with a fire in your belly and searing pain that, if not gripping you at the moment, may come upon you suddenly and with such force that you may lose consciousness (or continence).  It takes immense strength to leave the house and socialize with “the world” beyond your bathroom floor.

And sometimes a gutsy person will try something new – they may eat a new food, travel 10 minutes further from their beloved home bathroom than they’ve gone in the last 6 years, make plans to meet someone somewhere (even though they’re not yet sure how their body will be functioning that day), try to clean the house in 2 days, try a new activity or get to know a new friend – and it won’t always end well.  The food will make them sick for 3 weeks, they won’t make it to the bathroom in time, they will be late for that date, will feel so exhausted after just washing the dishes that they have to lay down and let the house clean itself, and the new “friend” won’t be friendly at all.  But you know what a gutsy person does?  He or she TRIES AGAIN…and AGAIN…and AGAIN.  Their life is characterized by a courageous perseverance.

I’ve also found that those who are either the most grateful or bitter about their lives are often those who have faced the greatest losses.  Gutsy people have the tenacity to chase after gratitude, dive after it and catch it by the heel if need be!  Gutsy people will do whatever it takes to find something to be grateful for, even when it *feels* like all is lost and the pain will never end.  We’re talking about gutsy gratitude – determined, bold, sincere-spirited GRATITUDE! – rather than a bad case of the “gutsy grumbles” which just sound like our intestines rumbling again as we complain.

To me, if I call a person “gutsy” it means we have these qualities and challenges in common – its a bonding word, with so much meaning that I hope in some small way the person who I believe is worthy of the title feels honored by it.  We’re in the same band, playing the same tune, trying to survive with a gut gone haywire and all the implications thereof.

Check out these other courageous stories of real people living real life with Functional Motility Disorders; they will inspire you to be gutsy in your own way today:  http://www.dha.org/courageous_stories

 

Take a moment in the comments below to share with Naturally Gutsy’s readers
how you’ve Got Gutsy!

Hospital – Noun. A place of drama, emotion, and contradiction

Whenever I go to the hospital, which is often, I usually take time to people-watch.  Hospitals are such odd places because they are full of drama, emotion, and contradiction.  As I get on the elevators in the parking deck, I’m met with lab techs and flower delivery men checking their cell phones, young children who have cancer and bald heads in the cold covered with hats that are often askew or falling off, a Mom who doesn’t speak English but passes me her business card hoping for more work opportunities after I smile gently and nod at her and her little daughter, grandparents going to see the new baby, wives saying goodbye to the husband of their youth for the last time, physicians and nurses who are doing their work then going home exhausted after a double-shift and remembering they will have to do it again in 24 hours, and janitors who seem immune to the odd combination of emotions circling around the premises yet who take pride in being able to help the young lady in the wheelchair find the ever-hidden handicap ramp and figure out how to extricate herself from the labyrinthine belly of the beast (hospital).

Just watching the faces alone is interesting yet overwhelming.  I suspect people watching me think some of the same thoughts I do in passing.  “Is he/she a patient or a visitor?  I wonder what brings this person here?  Does that person know the Lord?  Is the look on that person’s face a sign of determination, anger, or denial?”

Patients who have cancer aren’t always so difficult to identify, whereas patients at the hospital for mental health reasons fade into the faces.  In fact, the hospital itself is constructed to hide the identities of those who are “psych patients” by putting the waiting area for the Psychiatry Hospital alone on a different floor rather than on the ground level.  Only one smaller psychiatry waiting room is on the ground floor, hidden in an alcove with frosted glass for privacy.  The Neurosciences Hospital itself (i.e. “psychiatry hospital” cleverly re-named) is in the corner of the L-shaped hospital complex, sandwiched between the Cancer Hospital and the Women’s Hospital, and it doesn’t have an information desk like the others – you’re just met with a somewhat foreboding stained wood facade and four metal elevators, signs, and the feeling that says, “What about this doesn’t belong?”  I’m not saying the layout is all “wrong” necessarily, but I think it speaks loudly about our societal systems and culture, and especially what we think about mental illness.

In the Cancer Hospital and throughout the long hallway that connects the cancer hospital with the Starbucks, Neurosciences Hospital, and eventually the Women’s Hospital after the corner in the hospital’s “L” design there are many pictures of people’s smiling faces; some pictures are of patients from the Cancer Hospital, with and without hair and/or oxygen tubing and/or wheelchairs; others are the doctors and staff who treated them.  Yet the Neurosciences Hospital sits oddly in the corner between these two hallway areas with the pictures, and the continuous lines of these people photos ends about 50 feet from the Neurosciences Hospital area on both sides with a sense of uneasy and unnatural interruption.

I just notice these kinds of things because I spend enough time at the hospital, and often when I’m there for multiple appointments I have time to people-watch and ask questions in my mind about what I see.  The Cancer Hospital appears to be the largest hospital on the campus.  It’s truly massive.  I suspect it was built on later, as the main hospital seems pretty old but often renovated on the perimeter of the hospital…less often renovated in the belly of the beast where cafeterias appear to be 1980’s style with a few extra coats of paint.

In the lobby today there was a woman crying somewhat loudly and barely able to walk for grief’s sake it appeared as she clutched a man’s arm and he said, “I know.  It will eventually be okay.”  He too had tears in his eyes.  Nearby, before she passed, a doctor smiled genuinely and laughed as he picked up papers from the reception desk at the main hospital.

A little Black boy with cute curly hair saw the bright orange stuffed animal I had brought Daniel (a friend I was visiting) while I was waiting at the Children’s Hospital information desk to receive my visitor’s day badge.  He was too young to speak and say much, but his eyes locked on that stuffed fish (rather than my wheelchair, which he seemed not to notice while fully enamored with the fish) resting precariously on my lap as he tried to say something in that language only mothers seem to understand.  I said hello to him.  His mother watched him with one eye as she took care of her own business at the desk with another staff member.  I was called around the back side of the desk to get my mugshot taken, and I heard little stomping footsteps creep up behind me.  “Oh, you’re after that fish aren’t you!” said the boy’s mother who added, “She’s not gone yet; she’s just getting her picture taken.”  When I was ready to go, I said goodbye and waved to him.

Wheelchairs “belong” in hospitals.  Obvious disabilities, people missing limbs, and things that look “odd” or “gross” often also belong in hospitals.  It’s just the way life works.  Hospitals weren’t created for the healthy and whole.  Though I get plenty of stares from people who quickly avert their gaze when they realize I see them staring at my legs, probably harmlessly wondering why I am “in a wheelchair,” I don’t feel out of place in a hospital like I do out in public sometimes.  People are just curious; I’m curious about them too, but my questions don’t require a steady gaze to obtain answers because the answers typically aren’t to be had by looking harder.  The people staring at me just haven’t learned this yet; you’d have to ASK me why I’m using a wheelchair to get the picture, as my disability is obvious due to ambulatory aids, but yet not so obvious when looking at me without the same.

People with similar physical challenges occasionally nod gently to each other while passing in the hospital’s wings, a silent note to the one another’s resilience and “Survivorhood,” almost like the secret handshake you shared with the buds in your club when you were in elementary school, but with more life experience, joys, sorrows and pains behind the secret, all required for initiation into the “club”.

There’s a woman who I see literally every time I’ve been to the hospital.  I am beginning to wonder if she lives there.  For that matter, I think she has worn the same clothing each time I’ve seen her.  I normally find her in the same area or thereabouts, sleeping lightly next to her large oxygen tank held in a cart with two wheels and a vacuum cleaner styled handle, which rarely seems to have enough oxygen tubing to avoid getting caught up in her wheelchair.  As I quickly ate half of my lunch today, I was sitting in her typical domain and I watched her sleep, wondering if she was still breathing – she was, to my relief.  She appeared to have fallen asleep while watching out the window.  I expect to see her next time I’m there, and hopefully she’ll be awake and huffing and puffing as she tries to push herself very slowly through the hospital corridors.

I happened to note one day as I made my way to the basement of the Main Hospital for GI Procedures that the floors were stacked in the proper cranio-sacral order.  Brainy floors were the top floors, heart and lungs were the middle floors, and the end of the road – gastrointestinal evaluation – was in the basement.  This made me laugh out loud as I read the sign, to the amusement of patients passing by.  I didn’t remember any specific floors for legs, feet, or toes, however.  Sub-basement?

Two gift shops are placed strategically in the largest and most populated areas of the hospital – the Cancer center and Main Hospital.  Each have a different “feel” to them.  The Main Hospital gift shop is very UNC-ified with UNC car decals, gift cards of the generalized sort and nothing too Christian, some clothing and a sizable section for over-the-counter medications sold in expensive blister packs.  Pepto-Bismol, Advil, Aleve, Tums, Rolaids, and Benadryl are among the offerings which I’ve memorized through the all-too-frequent visit to the OTC rack for personal relief.  At the counter are candy bars, nothing which is remotely SCD legal.  You almost feel like you walked into a college bookstore on a university campus.  Well, I guess you have…sans books.  The Cancer center’s gift shop has a different flavor – Pink!  It seems to be mostly geared towards women, with those little lawn flags with pretty scenes screen printed into them sitting outside the door, welcoming you inside as if the wind in the hospital would ever cause them to wave – use your imagination.  This gift shop is also ever so properly positioned next door to the ladies grand 100-stall Cancer Hospital Bathroom; clever design to catch the lady’s eye after she’s relieved to be relieved and willing to spend a few minutes shopping for stuffed animals and bird houses before nature calls again.

When you think about it, there’s a lot of marketing that happens in hospitals.  We don’t typically stop to think about it, perhaps because the idea is somewhat uncomfortable.  Marketing and goodwill do not tend to go hand-in-hand unless there’s a catch.  The little medical supplies shop in the hospital, between the Cancer and Neurosciences hospitals, certainly sells quite a catch, as the prices are at least 25% higher than what you’d normally find at the medical supply store in your town.  TV’s in waiting areas broadcast the hospital’s good will, yet negate to equally inform consumers – uhm, patients – of their monetary net gains in providing such consumables each year.  Pamphlets have the hospital’s name stamped on them with “Ask your doctor about….You can have this procedure performed at our hospital with the latest technology….”.  I’ve read more than a few brochures while waiting several hours for late appointments.

I’ve been so pleased with UNC thus far, however.  The nurses have always been wonderful and kind, the doctors have been proficient and willing to listen to my concerns, I’ve not had one problem (yet) with the billing or financial departments, and even the trusty janitors are willing to stop waxing the floor to help me get where I need to be on time.  The overpriced bouquets in the vending machine almost always look fresh (I just look at them or take a picture rather than buying) and are perfectly positioned, like the gift shop, to capitalize on my sympathies.  What more could I want…besides an SCD restaurant inside my homey-feeling hospital?  Perhaps it’s time for me to consider living at the hospital too.  I’m there several times a week anyways.  Need Pepto-Bismol?  Just ask me – and send me a tip while you’re at it, eh?

Gutsy Girl

Happy 2 Year Anniversary! & Gluten, My Kryptonite

My Brother's Wedding (yes, I'm the short one who is NOT looking at the camera!)

My last gluten exposure…

On January 16, 2012 I celebrated my 2nd year anniversary of the last time I accidentally ingested gluten – and paid a dear price for the mistake.  The date coincides with my brother’s wedding, for it was at his wedding that I came under the spell of my Kryptonite, AKA Gluten.  Perhaps the only convenience to arise of this confrontation is that I have no difficulty remembering my brother and sister-in-law’s wedding date!

I had been gluten free (GF) since mid-summer of 2009 and I had only been glutened twice since that first GF day.  But I didn’t bring food with me because I didn’t want to embarrass my family who assured me gluten free options would be available.  Unfortunately, someone who has severe Celiac disease cannot assume that family members or friends who aren’t similarly afflicted truly understand what “gluten free” means and the dangers and nuances of cross-contamination.  Two meals ended up spelling disaster to my health for the better part of a year, though the destruction very slowly has been repaired by about 80% within the last two years.  Two meals; one body.

I can sum up my error simply – I took multiple careless risks.  

I was also struggling with hypoglycemia at the time, which sometimes caused me to pass out, so I knew I needed to eat; I had not eaten most of the day on both January 15th and 16th prior to eating with other people.  This set the stage for a cascade of bad choices.  I did not bring food with me while out in public, so if I wanted to eat, I had to eat foods I would not have chosen for myself.  Asking questions about food preparation and/or reading food package labels is necessary to avoiding gluten exposure, and I did neither of these.  I felt embarrassed about not being able to safely eat what others were eating, and the combination of hunger and hypoglycemia were all contributing factors to my decision making during these mealtimes.

On January 15th, I ate at a restaurant during the rehearsal dinner and felt sick after eating, but if I was glutened it did not trigger a full-on autoimmune response.  I made special requests to the waitress, but since everyone was eating the same thing I realized that my requests probably could not be accommodated, especially as the cook didn’t know what gluten was, and the meals were essentially defrosted the waitress explained.  Therefore, I tried to be safe; my meal was a bit sparse and I was still hungry afterwards, but I uncomfortably realized I had to make sure the diarrhea remained “my secret” rather than public knowledge, so I didn’t eat all that was on my plate for fear of G.I. related retaliation.

The day of the wedding, however, I partook of some fruit and salad (without dressing).  I helped myself also to deli meats (which I thought were gluten free – I didn’t yet know many deli meats have gluten) and cheeses.  All of these foods were surrounded by crumb-producing gluten-filled confections, treats, and bread around a large banquet spread.  It was unlikely that those preparing the foods were washing their hands between touching gluten-containing foods and “safe” foods, so cross-contamination was probably high.  Knives were being used on multiple foods without second thought.  This is the way most people without food allergies eat, and I had no right to pass judgment on them for it.

Each time I ate around other people in these situations while taking many risks, I felt very anxious.  By this time I was well aware of the scary consequences of eating gluten, both physical, psychological, and neurological.  The stress wasn’t helping my G.I. issues either.  I felt frustrated that my cooler of food would not have been a welcomed companion by certain family members.  Anticipating the former stress to be most significant, I was a bit surprised to realize that the greater stress of wondering if I was eating gluten overshadowed my concerns about what people thought…though evidently not enough to cause me to change my course of action and choose not to eat (which would also have drawn more attention to the situation by concerned family members who had not seen me for many years).  No matter how you cut the cake, I found these situations stressful on January 15th and 16th, 2010.

Unfortunately, it was about 30 minutes after eating during the reception that my intestines decided they would no longer cooperate and I had a very bad case of diarrhea in the bathroom.  I knew right then and there that I had glutened myself because of the way my guts felt.  I started to cry in the bathroom, knowing what may be ahead of me for the next weeks and months, but I decided to pull myself together and go back out to the reception hall and try not to think about it (though I had moments where I was nearly doubled-over with pain).

One of the happiest and one of the most difficult days of my life…

His Cheeks Are About To Explode

It was, after all, one of the happiest days of my life – My little brother was getting married!  I hobble-danced with my Dad and my Brother, and watched him and his bride dance and laugh.  I thought my brother was smiling so much his cheeks would explode or something dramatic like that!  It was surreal that my brother was now married (and I’m still not, but that’s another issue altogether!  Hee hee!) and I was happy for them and for each of our families.  Relatives had not seen me in years and the “reunion” aspect was refreshing and fun.  In these ways I had an excellent time and I really do consider it one of the best and happiest days of my life thus far.

 

 

 

Gluten Is My Kryptonite

The Kryptonite, however, had only begun its dirty work.  In the next few weeks the diarrhea had weakened me to the point where I’d been in the Emergency Room several times to be rehydrated.  Whenever I get glutened, soon after the daily diarrhea knocks me down, gluten and malnutrition affect my mind and psychologically many things make a turn for the worst – depression, suicidal thoughts, terrifying hallucinations night and day.  When the gut pain and diarrhea started to subside a little, the joint and body pain began – a few weeks of lying flat on my back, almost unable to move due to pain.  At that time, I lived with a saint of a roommate who helped me through these spells, but I know she was stressed by my illnesses as well.  I became so weak that I could not make it to the bathroom by myself unless I crawled very very slowly on the floor.  Oftentimes I didn’t make it to the bathroom, only 15 feet from my bedroom, in time.  Then the neurological issues began mid-way through the weeks of pain, and I would lose my balance and be unable to do simple things like holding a cup without spilling it.  This loss of coordination is called Ataxia.  My brand is called “Gluten Ataxia” (you can read more details about my experience here, if you’re interested).  I lost the ability to read anything less than very large print because my eyes would shake with nystagmus.  Even cutting up a salad without stabbing myself accidentally with the knife, or cutting off a finger, or falling over in the process was a major accomplishment.  The psychological issues and ataxia were the two leftover symptoms of my gluten attack which were the hardest to manage on a daily basis – the chronic pain I was more or less used to, since I’ve dealt with that most of my life.

Consequences – rarely a nice word…

Doctors had no cure, however, and my neurologist at the time only gave me a 50% chance of regaining the coordination I’d lost.  I was determined to do the best I could with what I had left.  I had to use my wheelchair more just so that I could get around without falling or breaking my fragile foot bones from simply standing on my feet (something I worried about while dancing with my Dad and brother), a gift so many people take for granted.  Driving was one of the most difficult challenges.  About four months after I was glutened, I began to regain some of my energy and I was able to get out a little more – a little – yet I had cut my work down to about 10 hours per week, and even that was pushing the envelope of my ability.  The crisis had basically devastated my hopes for being able to continue working outside of my home in any capacity; my health was then too fragile in many ways, and I had a new respect for the terrible cost of getting too close to my Kryptonite.

All of that suffering over a few bad choices that I made regarding what I should put into my mouth.

Celebrating healing, a new lifestyle, and “survival skills”…

Gratefully, this 2nd Year Anniversary story isn’t about all the terrible things that happened to me on January 16th, 2010.  Instead, it’s about how God has been working slowly but surely to heal most of the damage done to my body and brain at that time, and about rejoicing over the fact that I’ve not been glutened even once in a full two years!  Many people who have Celiac disease cannot declare such a record, but then again most people who have Celiac disease also don’t have the mean nasty version that I have which seems to affect literally every organ system.

There have been a few close calls in these two years.  Before I started SCD, I had bought a box of Gluten Free macaroni and cheese, for example.  I had torn off the top and was pouring it into the boiling water when I realized it didn’t say it was gluten free – I bought the wrong one with similar package design.  I noticed before I ate it and I was okay.  I’m grateful for the times that God has protected me when, on very rare occasion, I’ve taken even a slight risk.  (These have been very rare occasions indeed – I can count only three.)

Say NO! To Kryptonite

Kryptonite Bread

I decided to take full control, whenever possible, over what goes into my mouth.  I don’t eat foods that were not either prepared by myself or by friends who come to MY HOUSE and use MY KITCHEN and its associated cookware and foods…or prepared by a chef with whom I’ve had a significant conversation about gluten (and what it does to me so that he/she understands the severity of the situation) and whom I feel I can trust to create a gluten free meal at a restaurant where there is already a gluten free menu and the kitchen staff has been properly trained.  In the end, I’m the one who is always responsible for what I do or do not eat, and I cannot expect that a world of people who do not have life-threatening food allergies or food reactions would understand my needs and wants sufficiently to keep me safe.

When I was last glutened, I became determined to learn more about cross-contamination and to understand what I had to do to avoid ever being glutened again.  Some friends said I became “obsessive-compulsive” about gluten.  Now that you understand how sick even a few molecules makes me, can you really blame me for developing survival skills that require extreme attention to such details?

After my last glutening, I learned to not let people’s opinions of my cooler, my food, or my habits (of wiping tables and oft-glutened surfaces down with wet wipes) bother me nearly as much.  I’d rather be healthy and genuinely enjoy my friends’ company rather than being in their company but feeling consumed in my anxiety the entire time, worrying whether or not the food I was offered is actually gluten free; that’s one way to quickly kill a fun evening!  (Hint!  If there’s some knock-out good Christian guy out there who wants to take me on a date, please let’s do something that doesn’t involve food, okay?!)  In the last year I had to eat baby food, and I eventually learned to feel as comfortable as possible popping open a jar of Gerber and eating with friends who were eating “real food”.  They got used to it too because I was comfortable “in my own skin”.  If someone has a problem with me eating what keeps me healthy, then I feel that it is THEIR problem and not my own.  I’m being responsible to care for myself within the limitations God has allowed me to have.

So, those are my thoughts regarding my 2nd Year Anniversary post-glutening.  I’ve been Gluten Free for more than 2 1/2 years and I don’t regret it one bit.  In fact, if I had not gone gluten free I don’t believe I’d be alive today.

Here’s to a lifetime of gluten free living and avoidance of cross-contamination!

Cheers!

Gutsy Girl