#HAWMC Challenge Day 30: Unprepared

I don’t enjoy looking back on the beginning of my patient journey with gastroparesis.  Even today, after more than a year has passed, when I think back to the first few weeks of mental anguish and physical agony that followed my initial diagnosis, I get distraught.  You see, I did not understand then what was about to happen to me and how life-altering this condition would be.  I often wish I could have known from the beginning what a horrible and incredible journey I was about to embark upon.  I wish that someone had prepared me for the overwhelming emotional upheaval, physical changes, and social adaptations that would be necessary due to this devastating disease – as if that were somehow possible. 

Since being diagnosed, my life has changed in ways I could not have envisioned, and many of these changes came about quite suddenly.  My illness did not arise gradually and allow for adjustment.  I had no time to prepare for what would be required of me.  One day, out of the blue, I found myself vomiting, in excruciating pain, and on the verge of collapse.  I was hospitalized that same day and put through a battery of tests (including one particularly terrible one where the doctors forced a tube down my nose and pumped my stomach).  Within a week, I was diagnosed, given only a brief explanation of my illness and its treatment, and sent home.  For the next few weeks, I was on a liquids-only diet and was told that I had to gradually work my way up to soft foods and (eventually) solids.  I honestly believed that if I could simply endure those first few weeks of torture, I would then be able to return to my normal life. 

I recall the doctors giving me an overview of gastroparesis.  They told me it was “paralysis of the stomach” and impressed upon me that there was no cure.  I remember them saying that some people would find dietary changes helpful, and if those didn’t work, there were a few medications to try – but they came with risks and negative side effects.  I recall them telling me that some people would opt for surgery to implant a gastric electrical stimulator or resort to feeding tubes when their symptoms were severe.  Mostly, though, I remember them saying that some lucky few would recover almost completely over time and would not experience long-term effects.  Of course, this last statement is what I latched onto and believed would be the case for me.  How could such a thing start so suddenly and not go away just as suddenly?  After all, I was as healthy as I had been in my entire life prior to this episode.  Not a big deal.  I would suffer through the liquids-only phase and move on with my life.

But it didn’t happen that way.  I went home believing I would continue to improve; instead, my condition deteriorated.  Within a couple of days of being released from the hospital, I started vomiting again and could barely keep down liquids.  The attacks of pain worsened, and I became so weak that I honestly could not lift my head up off the couch.  I told my family goodbye.  I truly believed I would die.  I finally mustered up the courage to call my doctor and told him that despite the risks, I thought I should try one of the medications he had mentioned.  He agreed, but because of FDA restrictions and the limited availability of my particular medication, it was two horrendous weeks before I could begin taking it.  These were without a doubt the longest two weeks of my life. 

Since starting the medication, I have stopped vomiting (for the most part) and I can now function well enough to make it through the day, but I still cannot eat without pain.  It is clear to me now that I will likely never again be able to eat “normal” foods in “normal” amounts.  I long for food.  I think about it every second of every day.  I want so badly to sit with my family and enjoy a meal again.  This yearning for sustenance never goes away, and at times, it is almost unbearable. It is likewise clear to me that fatigue, nausea, and pain will probably be a permanent part of my life.  And it is crystal clear to me that this is a life-altering disease from which there is perhaps no coming back.  I have come to realize the horrors of hunger and malnutrition.  I have experienced levels of fatigue that I previously thought impossible, and I have endured unfathomable pain.  I had no idea I would face this.  But that is not all.

Beyond the physical horrors of this disease, the mental and emotional aspects have taken their toll as well.  Before being diagnosed, I was able to go about my days as I pleased.  I could work, complete household tasks, attend social gatherings and family events, take long walks, frequent restaurants, and generally carry out my affairs with little impediment.  I was unprepared for the limitations that would follow my diagnosis and for the isolation that would result from it.  For the most part, I am confined to my home and can hardly ever leave.  I joke that the only time I go out is to a medical appointment – and yet, that is the truth.  I do not travel or “vacation”; I miss my child’s events; and I endure much guilt because I cannot attend even the most important family functions.  I had no idea this would be the case.

I have also been forced to face my own mortality like never before.  I believe my condition is deteriorating.  I believe I am dying, and it is a slow, torturous death – death by starvation.  I am not afraid of dying, but neither do I want to die.  I worry about what will happen to my family when I am gone.  I have a young daughter, and I fear her reaction to my death and the consequences that might result from her growing up without a mother.  I cannot bear thinking about the pain it will cause my husband, and I worry that he might not be able to function when this occurs.  I want to be there when my daughter turns "Sweet Sixteen."  I want to hear about her first kiss.  I want to be there for her when she is sick, scared, or needs advice.  I want to see her grow up, get married, and have children.  I want to know that she has a good career and a loving family.  I want to grow old with my husband.  Facing the strong possibility that none of these things will occur has been incredibly difficult, and it was something for which I was completely unprepared.  The mental anguish is almost indescribable.

When I left the hospital a year ago with what I thought was little more than a stomachache, I had no appreciation of “rare” diseases.  To be honest I am not sure I even understood the concept of “chronic” illness.  I had no idea that most people, and even many doctors, have no or little knowledge of my disease and that there are few sources where one can find in-depth information.  I had never sought help from any sort of support group prior to my diagnosis, and I had no idea these groups even existed online.  I knew about advocacy efforts, but being a political science graduate, these were activities I associated with politics only.  I was ignorant to the monumental difference these concepts, this activity, and this unknown disease would make in my life.

Since my initial diagnosis, I have discovered many different forms of research and sources of information.  I have spoken to doctors, hospital personnel, patient organizations, researchers, and writers in my search for knowledge and answers.  I have become heavily involved with gastroparesis (and other chronic illness) groups online.  I have created and now co-administer a set of advocacy groups that seek to foster awareness and change for my community.  I am active in online chats, meetings, and “venting” sessions.  I am connected in ways I would have never dreamed possible a year ago.

In addition, I have discovered a whole new purpose and meaning in my life.  Over the course of my journey, I have seen unimaginable suffering and need.  I am overcome with compassion and concern for the people I have met, and I am likewise overwhelmed by the kindness and support they have shown me over this past year.  My eyes have been opened to a world that did not previously exist for me.  I have bonded with these souls in ways I never thought possible.  

I understand now what I could not fathom in the hospital so long ago: this is a “forever” illness.  It isn’t going away.  It has changed me, and there is no going back to life as it was before – even if I were to be cured tomorrow.  I was unprepared for this, and I often wish someone had initially impressed upon me the seriousness of my gastroparesis diagnosis.  The truth is, though, that it is unlikely I would have believed them or heeded their warnings and advice.  Something this devastating, this life-altering, cannot be known until experienced, and the unfamiliar path is just part of my harrowing yet uplifting journey.

#HAWMC Challenge Day 29: Product Review

The prompt for today is to review a health-related product I find particularly helpful.  Now, I must tell you that I am unable to tolerate most foods, but since eating is what those of us living with gastroparesis struggle with most, I wanted to review a food product.  My options are limited here, but there are still a few items I find both helpful and enjoyable.  One of the best I have found is Kefir.  I am guessing many of you have never heard of this.  I label Kefir as a sort of drinkable yogurt, and I love it not only for its taste, but also for its health benefits and tolerability. 

Though thinner in consistency than yogurt, Kefir tastes similar and has many of the same health benefits.  Like yogurt, it is a good source of probiotics, or the “good” bacteria we need to promote digestive tract health.  Kefir is actually thought to have about three times as many beneficial organisms as yogurt.  It is also a good source of easily digestible proteins, biotin, phosphorous, and calcium (and is even offered in a lactose-free version).

Kefir is widely available in supermarkets in a variety of different brands and formulas.  I happen to prefer Lifeway Low-Fat Kefir, but there are many others from which to choose.  I have tried most of the flavors, and I have enjoyed almost all, but my favorite is the low-fat Raspberry (http://lifewaykefir.com/products/raspberry-low-fat-kefir/). 

I have also used Kefir (flavored and unflavored) in cooking.  It works well as a substitute for buttermilk, and can be used in biscuits, breads, pancakes, and other such creations.  Because of the wide variety of flavors available, Kefir is also a great ingredient for smoothies.  You can use it in place of milk or juice.  It adds richness to the drink and makes it quite like a shake.  I cannot eat many of the foods I cook, but my family enjoys them, and I feel good about them making healthy choices. 

If you are able to tolerate thicker liquids and/or soft foods, I highly recommend Kefir.  It is one of the first and only foods I have been able to successfully consume.  I have included links to additional information regarding its nutritional benefits, production, and varieties below.

Kefir Grains

For general information and an overview of the benefits of Kefir see: http://www.kefir.net/

For instructions for making Kefir at home see: http://www.instructables.com/id/How-to-Make-Authentic-Milk-Kefir/

For a good discussion of the differences between yogurt and Kefir see: http://www.culturesforhealth.com/difference-between-yogurt-kefir

For Lifeway product information and choices see: http://lifewaykefir.com/

For a variety of Kefir recipes see: http://www.culturesforhealth.com/milk-kefir-recipes

#HAWMC Challenge Day 28: HEALTH

The prompt for today is to use “health” as an acronym that represents my health journey.  I am not the most creative or poetic person in the world, but I will give it a shot!

Happy (despite my circumstances)

Engaged (with my gastroparesis/chronic illness community)

Aware (and informed about my disease & its treatments) & Active (on behalf of others)

Learning (about my disease, my limitations, and my strengths)

Talking (to others about my disease, its consequences, & the solutions we need)

Helping (others to cope with their illness and thrive in spite of their limitations)

#HAWMC Challenge Day 27: Understanding

The prompt for today was to write my response to people who do not understand my illness and who are inconsiderate or hurtful because of this.  The problem is that I have not really experienced much of this.  I have a wonderful support system in my family and friends.  I am blessed in that regard.  Those who know me have been most kind to me, and any hurt caused by others has been minimal and unintentional.  This is not the case for many in my groups, though.  They have been hurt countless times, even by those closest to them.  Some have come to believe that they are responsible for the mistreatment they endure.  Many feel guilty because they cannot live up to others’ expectations.  They feel misunderstood, deserted, and isolated.  A lot of them fear speaking up for themselves because they do not wish to cause additional conflict within their family and their set of friends.

This disturbs me greatly.  If I could pass along any message to the people in my groups who are hurting so deeply, it would be to tell them that they are not at fault for their illness and they should not feel guilty for the things in life that are beyond their control.  They are not failures because they have been afflicted with a chronic illness or because other people do not understand the difficulties of living with a devastating disease such as gastroparesis.  They do not deserve to be treated harshly or unkindly, and they have every right to stand up and speak up for themselves.  I wish with all my heart I could give everyone the courage and confidence to do this.  I see so many people who believe themselves to be worthless because of what this illness has done to them.  But they are not worthless; they are of utmost value!  They are valuable simply by virtue of being human.  I want so badly for them to see that they should demand better for themselves.  They should NEVER be ashamed, or embarrassed, or feel guilty because of an illness beyond their control.  My fellow GPers are some of the toughest warriors around, and they must prove it every day.  I want them to feel PROUD of what they are accomplishing and never be ashamed!  So, I say this to my gastroparesis community:

You are surviving this horrendous illness despite all the hardships.  You are fighters!  You struggle with family members and friends who do not understand you; you battle doctors who lack compassion, knowledge, and the will to treat you properly; you wrestle with insurance companies that deny you basic, necessary treatments and procedures; and you combat the media and general public who have no idea what you contend with on a daily basis.  You are sick, and you are doing the best that you can.  You have nothing to feel guilty about.  You do not have to continue to apologize for your illness and the limitations it puts on you.  You are not a lesser human being because you do not live up to some ideal that others have established for you!  Stand up for yourselves!  Educate your family, your friends, your doctor, the media, and the public.  Do not tolerate mistreatment that you do not deserve.  Feel good about yourselves and what you are accomplishing simply by enduring this disease!  You are worthy of love, respect, and understanding.  Demand it!  

I am re-posting an article I previously wrote (below) which I believe fits in well with today’s post.  I wrote it for my groups because I dearly love the people there, and I desire the best for them.  As I have said many times, we need and deserve awareness, understanding, help, better treatments, and a cure.  We have borne enough adversity, and we can no longer afford to suffer in silence and remain invisible.

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You are Not a Failure: Speak Up!

It is far too easy for members of the gastroparesis community to believe that we should suffer silently with our disorder. I see this in my support groups every day. They are full of people who feel guilty for not being able to live up to others' expectations of them and who fear that revealing their illness will result in disbelief, disdain, or outright harassment. These are people who try to hide their condition from friends and family; who eat when they are out at social gatherings, even though they know it will cause them intense pain; and who try hard to keep from mentioning their illness in any sort of public way. We seem to believe that we are somehow at fault because we do not have complete control over our illness. We are afraid of offending others and of appearing somehow "lesser" because of our disease. We are afraid of disappointing others and of not living up to some ideal we (or they) have set for us. We are afraid of being mocked or misunderstood. And so we remain silent. But this has to change. This has to change because we are starving to death.

I think about what it was like for me when I first got sick, and what it is still like for me now, to some extent. When I was in the hospital, I was so embarrassed about my condition, about my weakness, that I would not even let my parents come to visit me. I simply could not be seen like that! I was vomiting, frail, in agony, and almost completely helpless. I was fragile. Yet, I refused medications, even pain medications, because I had to prove that I was too strong to resort to such measures. I viewed my illness as a failure. I refused to talk about it with anyone, including my family. I remember telling my husband that he was not to say anything about how sick I was to anybody - too much stigma attached.

I strove to keep up with my "normal" life. I tried to eat with my family and attend social events. I pretended (and told others) that I was "fine" and "doing pretty well." I went about my regular exercise routine, completed most of my usual household chores, and endeavored to preserve my life as it was before my diagnosis. Unfortunately, the result of all of this was a worsening of my condition. It gradually became clear to me that it was no longer possible to live the life I had known prior to gastroparesis. I came to realize that I must let others know things had changed for me.

When I finally decided to go public with my story for the first time, I panicked about this decision. I cried and worried. I was sure all of my friends and family would think I was seeking pity and avoid me because of my revelation. I feared that it might make my friends uncomfortable, or that people would be irritated because I was focusing on my illness. I feared that people would no longer see me as strong or independent. I wondered if they would ever believe me to be a capable human being again. I fretted that they might make fun of me or not believe the severity of my condition.

In the end, I concluded that even if all of that were to happen, it would be better than the alternative. It would be better than being isolated and alone, trying to deal with this disease without any help and without any understanding, cowering at the thought of "going public." It would be better than killing myself trying to sustain a lifestyle that was no longer really physically possible for me to maintain anymore. It would be better than letting the world believe that my starvation is somehow tolerable or acceptable and should be borne without complaint.

I finally realized that I am not a failure just because I cannot control the effects of my disease. My illness is not something I should have to be embarrassed about. It is not my fault that I am sick. It is not my fault if my friends, family, doctors, or anyone else do not believe me or understand what I am going through. I do not need to feel guilty because I cannot attend social events, or clean my house, or eat a meal that someone has prepared that would put me in agony if I were to consume it. I do not need to feel accountable if I miss the family Christmas gathering or my child's recital. I do not need to be embarrassed or feel weak if I want a medication to help with my pain. I don't conceal my disease or its effects from anyone anymore, and when I am asked about it, I tell the truth - all of it.

I should not have to hide my condition from the world - and neither should the rest of my gastroparesis community. We are not weak; we are sick. We should not feel guilty because we lack control over our disease and its consequences. We should not feel weak or somehow at fault for our condition. The truth is that we need help. We are literally "starving" for help, as a matter of fact! We need awareness, understanding, acceptance, better treatments, and a cure. And those won't come unless we speak up and let people know the reality of our situation. This is not a subject hardly worth mentioning; this is survival.

These days, I refuse to apologize to anyone for being ill or for addressing my disease in public. I tell my story for all to see, without hesitation. I speak with anyone who will listen. I write anyone who can help my community, and I provide any sort of personal information they desire. I would stand on the street corners and shout if I believed that had some value. I no longer feel guilty about being ill or about being unable to control the uncontrollable. I refuse to be quiet any longer, and I encourage my GP community to raise their voices as well. Our silence must end if we are ever to become visible. It must end if we truly want help. Speak up and be heard!

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My family "went green" for our advocacy group's St. Patrick's Day event.  Here is what they wrote: "Not just wearing our green for St. Patty's Day this year! We love you, Melissa Adams VanHouten, and we're so happy to help spread the word about Gastroparesis (GP)!"  This is the kind of support you all deserve.  Who could ask for more?

#HAWMC Challenge Day 26: Great Day

Some days, I think I just wake up in a bad mood.  I’m not sure why.  Perhaps I went to bed worried or upset, or perhaps I dreamed of dreadful events.  In any case, there are times when I simply don’t feel like it’s going to be a good day.  I can’t always turn my bad mood around, but I have found that there are many things I can do to try to improve my state of mind.  Here are a few:

1.  Drink coffee.  

This has become sort of a joke on my Facebook page.  Every morning I am greeted by the latest coffee memes on my Facebook wall.  This alone cheers me up.  If you know me at all, you know I am very fond of coffee (okay, “obsessed” is probably a better choice of words).  It gives me an energy boost and helps me to concentrate and think more clearly for certain, but I simply enjoy the taste, and I love the way it soothes my throat and warms my hands.  It is a great little mood-changer first thing in the morning.

2.  Talk to others – or my bird. 

  

Sometimes, it helps to chat with people who are not feeling so down or angry.  The good mood of others can be infectious.  “Venting” to others about my problems can also be helpful.  When I feel like I have been heard and understood, I am more able to let go of my hurt, anger, and bad feelings.  It helps when others tell me that they have been where I am and that whatever problems I am having can be overcome.  And when people fail me, I always have my trusty bird to fall back on.  (See previous blog for details.)  It is nearly impossible to remain in a bad mood when my African Grey, Grover, is cheering me on with “You’re funny,” or “I love you.  You’re a good, good bird.”

3.  Listen to music.  I challenge anyone to listen to the following and NOT feel better:

"Happy" - Pharrell Williams

4.  Go for a walk/change the scenery. 

Sometimes literally having a different view can give me, well, a different view!  A change in scenery can often change my perspective on whatever problem, hurt, or conflict is causing my bad day.  Taking a walk around my neighborhood, in the park, or at my local zoo or gardens lightens my mood because it breaks my hum-drum routine and exposes me to fresh sights – which often result in fresh ways of thinking.

5.  Busy myself with chores.   

  

Anything that takes my mind off my own situation seems to improve my disposition.  Even menial jobs distract me from my bad mood.  If I am paying bills, folding laundry, or organizing my files, I am forced to concentrate on the task at hand and I tend to forget the problems of the day.

6.  Focus on helping others. 

  

I tend to forget my own problems when I am centered on helping others, especially those in my support groups.  This not only takes my mind off of my own issues, it also makes me feel better about myself and my circumstances.  It reminds me that others are struggling and could benefit from a listening ear and a kind word.  It reminds me that I have a purpose from which I should not be distracted.

7.  Give myself some sort of treat or reward.

When I am feeling particularly down, treating myself to a movie, a good book I have been meaning to read, a visit to a nearby attraction or interesting event, or even a much-needed nap often elevates my mood. 

8.  When all else fails, sit down and analyze my situation.

When none of the previous tactics seem to be making a difference, it is likely time for me to engage in some good self-analysis.  At times, my bad mood stems from something a little more serious, and unless I get to the root of the problem and work it out, I cannot seem to move on.  I sometimes need to ask myself if I am lonely, tired, angry, hungry (and the answer is always “yes” to this), or worried?  Is there anything I can do to “fix” this?  Often times, I can change my bad mood by resolving the underlying circumstances that have caused it to begin with.  This might not be a simple or quick fix, but it is frequently quite effective.  If my problems are ongoing, it is difficult to move on until I have sorted them out and done my best to deal with them.  Some problems simply demand attention and cannot be ignored forever.  

Changing my frame of mind from “down” to “up” is sometimes difficult and other times relatively simple, but in either case, it can and should be done.  A positive attitude makes for a happier day, and being in a good state of mind allows me to focus on the things that really matter in my life – my loved ones, purpose, and goals – rather than the problems that serve to burden me.

#HAWMC Challenge Day 25: Word Cloud

Note: Today's prompt was to use "Wordle" to create a word cloud filled with words that come to mind when I think about my condition.  Technology and I sometimes don't get along, though, and I couldn't get "Wordle" to work for me.  So, here is an alternative from www.abcya.com -- a site for children!  Good Grief!  Now, I am not the most creative person in the world, so please forgive me for all this lacks!

GASTROPARESIS: PARALYZED STOMACH

Here is a list of the words I intended to include.  Some apparently did not make the cut!  I look forward to tomorrow's challenge... when I can use sentences again!

GASTROPARESIS 

PAIN

BLOATING

NAUSEA

VOMITING

EARLY SATIETY

WEIGHT LOSS

MALNUTRITION

HOPE

ADVOCACY

FAITH

FIGHT

CHANGE

BE HEARD

SPEAK

LIVE

EAT

FOOD

NUTRITION

LONELINESS

ISOLATION

DEPRESSION

SURGERIES

TUBES

PICC LINES

SCARS

BELIEVE

PROTEIN SHAKES

SUPPORT

FRIENDSHIP

COMPASSION

SHARING

SOCIAL MEDIA

ACTIVISM

ATTENTION

CURE

BETTER TREATMENTS

MEDICATIONS

JOY

EXPECTATION

TRUST

PHYSICIANS

MEDICAL CARE

VENT

OPTIMISM

ENDURANCE

PERSEVERANCE

DETERMINATION

PERSIST

SURVIVE

HUNGER

STARVATION

THRIVE

EXERCISE

NUTRITION

LIQUIDS

WITHSTAND

UNDERSTANDING

FORTITUDE

WILLPOWER

DEDICATION

RESOLVE

GRIT

STRUGGLE

#HAWMC Challenge Day 24: Fitness

I abhor exercise!  I don’t find it enjoyable in the least.  I hate it that it takes up my time, and I hate it that it makes me tired (especially since I am already fatigued due to chronic illness), and most of all, I hate to sweat.  I have a treadmill, an exercise bike, an elliptical, and a trampoline – and I hate them all equally.  Nevertheless, I have exercised for many years now because of the mental and physical benefits I gain from completing a fitness routine.  I have had to alter and reduce my workouts since being diagnosed, but I am still able to manage a little physical activity, unlike many of my friends who are simply unable to participate to any degree, and for that I am grateful.

Whether I want to or not (and I never truly want to), I arise every morning, make my bed, and head down to the many machines awaiting me in my exercise room.  (Yes, I have a room, and it is my least favorite room in my house.)  I used to walk outside, but my husband now fears that I might collapse from weakness somewhere along the road, so I confine myself to the indoors for his peace of mind.  I begin with stretches.  I have osteoarthritis in my back and hips, and I find that if I perform the basic stretches that my physical therapist recommends, it actually helps. 

After stretching, I choose a machine and engage in around 20 minutes of heart-pumping activity.  I was once able to run for about 45 minutes with no problem, but I cannot manage that level of activity on the minimal calories I am able to consume now.  I tend to alternate among my various machines based on which body part aches the most and how bored I am with a particular piece of equipment, but regardless of which machine I use, I always end my workout with a few minutes on the trampoline.  (A friend of mine recently informed me that trampoline bouncing increases oxygen circulation to your tissues, and it certainly minimizes stress on the joints, so I try to use it every day.)

I have found that though I detest exercise, in the long run, it helps me both mentally and physically.  To begin with, there are obvious heart and circulatory benefits to working out.  It also lessens my osteoarthritis symptoms and strengthens my bones when I can remain active.  Most importantly, there is some evidence (and I am fully convinced of this based on personal experience) that it improves digestive motility.  This is rather important for someone with gastroparesis.

In addition to the purely physical benefits, regular exercise also improves my mental health.  It relieves stress, which I don’t completely comprehend, but which has something to do with the mind-body connection.  Physical activity apparently causes your body to release endorphins that act as painkillers and can relax you, thereby reducing your stress.  Though I don’t understand this well, I know it to be true because I have experienced it.  Exercise also aids me in maintaining focus and concentration, which helps me to remain mentally alert.  Further, though I hate doing it, once I have completed my workout, my mood has generally improved.  Most of all, though, physical activity simply makes me feel better about myself.  When I have done something that I know to be beneficial for my overall health, and when I have achieved a small goal that I have set for myself, I feel good about my accomplishment.  

So, while I will likely continue to gripe and complain about how much I hate workouts, I will also likely persist in my routine for as long as I am able.  I might have to alter my methods and reduce the amount of time I exercise to accommodate the progression of my illness, but as long as I can move, I will do so – and I will be thankful for this gift of motion.

#HAWMC Challenge Day 23: Starving for Help

I had a good week, a very good week. I probably managed to consume between 500 and 600 calories per day this past week, every single day. I thought I was doing so well. I was feeling pretty good this evening, so I decided to take a couple of bites of a cookie – merely a couple of bites, not the whole cookie. I am doubled over in pain now, and I am in tears. It is agonizing. Who would believe this kind of pain could stem from tasting a couple of bites of food?  I only wanted to taste a cookie. I miss food. I want to eat… I just want to eat!  I want to have a normal day again, just once – one normal day, the way it used to be.  It has been more than a year now since I have been able to consume a meal, and I don’t think I will ever be able to eat one again.  I have a pretty good attitude toward my life and my circumstances, but the fact remains that like so many of my friends, I am not getting any better.  I am dying, and it is a slow death, attributable to starvation.  I am dying, and there is no help, no cure, few treatment options, and little concern about it from the media, the public, the policymakers, the doctors, and the researchers.  I am dying, and no one wants to hear it, or face it, or stop it from happening.

I know this is not what people want me to say, but nevertheless, it needs to be said.  I am not depressed, and I do not fear death, but neither do I want to die.  I am not frightened by the thought of death, but I am a little afraid of how painful it might be.  I am also terrified about what will happen to my family when I die.  I want to watch my daughter grow up.  I want to see her graduate, get married, and have children.  I want to see what career she chooses.  I want to see what sort of woman she becomes.  But mostly, I don’t want her father and her to suffer because of my absence.  I don’t want her scarred by such a traumatic experience, and I don’t want her to struggle as a result of it.  I don’t want it to change her, and I don’t want it to hinder her from becoming all that I know she can be.  Quite simply, I don’t want her to have to grow up without a mother. 

Does this matter at all to the people who make the decisions that largely determine my fate?  Does it matter to the medical world, the lawmakers, the insurance companies, or the news people?  Not enough.  Most of them have never heard of gastroparesis, and the ones who have, don’t fully understand it or decide to ignore it – dismiss it as if it is a stomachache.  Well, let me tell you, it is not just a little “tummy trouble.”  I am not certain that anyone who has not experienced this disease personally can ever really grasp the true horrors of this disease, but if these decision-makers and life-shapers could spend a week in my support groups, perhaps they would begin to comprehend the never-ceasing torture we endure day in and day out.  Perhaps then they would see what I see: tremendous physical suffering due to pain, nausea, and the inability to eat; seemingly endless doctor visits, emergency room trips, surgeries, and procedures; isolation, loneliness, depression, and resignation; financial distress and ruin.

Perhaps the medical world would understand the lack of compassion and concern we face on a daily basis.  Many in my groups are in and out of emergency rooms, must tolerate lengthy hospital stays away from their family, and are forced to endure surgery upon surgery in an attempt to simply survive.  Many of us have no effective medications or treatments and are denied insurance coverage for the few necessary drugs, treatments, and supplies we do have. Maybe after a week in my groups these doctors would see that we are frequently mistreated and even downright abused by a medical community that lacks knowledge, understanding, and/or the will to help us.  Maybe these same medical “professionals” would feel guilty for their lack of desire to help and for treating us as nuisances to be swatted away like flies, without so much as an ounce of concern – guilt over making us feel humiliated, treating us like hypochondriacs and drug abusers, and for pushing us out their doors without providing any aid or any guidance as to where we might go for assistance.  Perhaps they would think twice before leaving us to cry out in anguish while lying in a hospital bed being denied pain medication.  Maybe they would reconsider their use of phrases such as, “there is no pain with gastroparesis” and “there is nothing more we can do.”

If the media could spend a week in my groups, would they begin to understand our need to be heard?  They have no space for our stories; yet, they seem to find slots for such pressing matters as the perils of purchasing fake Final Four tickets and the opening of the latest local dog bakery.  They can sometimes tolerate the chronically ill when we have sexy, prettied-up stories or when we have overcome incredible odds to survive, when we are upbeat and hopeful, but they want no part of our messy stomach and bathroom issues, our tubes and scars, and our despair at facing starvation and ultimate death.  Perchance if we could learn to be a little more cheery about our circumstances, and pretend we are not bothered by our skeletal frames and hunger pains, we would gain acceptance.  Perhaps if we could hide our tubes and ports and PICC lines, we would be more camera-friendly.  Maybe if we could find a way to tie our stories into both local and national events, or manage to summarize our dying pleas in 140 characters or less and get enough people to “tweet” a certain hashtag, or manage to generate some sort of low-level controversy, we would get a moment of coverage from them.  Would a week in my groups change their attitude and make them more amenable to assisting us?  Would our pleas for help then cease to fall upon deaf ears?

If the policy makers, insurance companies, and researchers spent a week in my groups, would they put less emphasis on monetary concerns and more on humanitarian issues?  Would they be more willing to fund our cause if they saw how ineffective our current treatments and medications are?  Would they open their eyes to our suffering and make us a priority?  Possibly the lawmakers don’t understand that when they refuse to grant us anything beyond a tiny portion of their research dollars, no one is willing to seek treatments and cures for us.  Maybe they believe researchers work for free.  Or maybe they believe digestive disorders are not cause for genuine concern.  After all, what’s a little heartburn, gas, and bloating, right?  Perhaps, after witnessing our pain and the tough choices we must make when we cannot afford the potentially life-saving drugs and treatments they refuse to cover, insurance companies would begin to appreciate our dilemma.  Would they then understand what it is like to look forward to a surgery for pacer implantation as your last hope for survival only to be told it is experimental or not medically necessary and therefore will not be covered by the insurance company to which you have paid premiums your entire adult life?  Perhaps after spending some time in my groups and witnessing the tics, cramps, pain, nausea, and heart problems caused by our currently available medications the FDA would consider streamlining and fast-tracking drug approval or loosening restrictions on “risky” and “potentially addictive” medications.  

In the early hours of every day, I rise and head for my computer to work as long, and as hard, and as fast as I can to reach the people who might be willing and able to help us with our plight.  I sacrifice time with the family I love in the slim hope that I might be able to persuade just one influential person to notice, to care, to help us.  I panic if I must fritter away a day due to other obligations (which mostly consist of doctor’s appointments) because I recognize that this is time I will not be spending on advocacy.  I do not know how much longer my friends and I have left, so I cannot afford to squander my time.  Does anyone appreciate that we are people – human beings with the same wants, needs, goals, and desires as others?  We are struggling.  We are dying.  We are STARVING FOR HELP.  It’s not just a slogan.  Does anyone hear us?  Does anyone care?

#HAWMC Challenge Day 22: Hobbies

I am not someone who has many hobbies, but the few I do have I embrace wholeheartedly.  I am a birdwatcher, and I love to color, read, solve puzzles, and watch college basketball.  These activities give me benefits I believe would be advantageous to anyone battling a chronic illness.  They are relaxing and stress-reducing, keep my mind engaged and distracted from my pain, allow me to socialize with others who share my interests, help me to expand my mind and improve my mental state, alleviate boredom, and remind me that I am a “real” person – and not just a patient.  Besides that, they are fun!

One of the greatest benefits of having a hobby is that it helps occupy time in what can seem like a long, lonely day to those of us struggling with the boredom that often accompanies chronic illness.  Many of us spend vast amounts of time at home alone because we are physically unable to get out to work or participate in activities we enjoyed prior to our diagnosis.  We are now limited in ways that sometimes confine us to our homes for long spells.  Hobbies help pass the time.  When I am reading a particularly good novel (usually something from the dark mind of Stephen King!), I often get lost in the story, and this makes my day go a little quicker.

Hobbies also keep me mentally sharp.  Reading obviously has this effect, but even activities such as bird-watching, puzzles, and viewing basketball games can contribute to one’s mental acuity.  When I am studying my backyard birds, I generally must consult a bird guide to identify them.  I learn more about them every day.  Puzzles require me to examine and analyze just how things fit together, and basketball games keep me contemplating strategies and anticipating next moves.  These activities challenge and stimulate me; they “exercise” my brain.  This is important in a world where long hours alone is the norm and where one’s mind might otherwise be unoccupied.

Further, engaging in most any kind of hobby distracts me from my pain, nausea, and other symptoms, if only for a brief time.  When I am focused on staying within the lines of whatever picture I happen to be coloring, or when I must concentrate intently on my latest word-search puzzle, I cannot think about my symptoms.  They always return to the forefront at some point, but for a time at least, I am sidetracked by other activities and focus less on my infirmity.  This is a welcome diversion.

Participation in hobbies helps assuage my loneliness as well. One can find online groups for most pastimes nowadays.  For instance, I can jump online anytime and socialize with others in birding groups, or I can join book clubs and discuss the latest popular reads with others across the world.  Right now, I am part of a group that discusses the works of Saint Augustine (one of my favorite philosophers and theologians).  Who could imagine there would be a group for such a thing?  Yet there is, and I have enjoyed interacting and mingling with the other members who share my interest.  I might not be able to leave my house frequently, but due to the opportunities technology provides, I am still able to engage in meaningful interactions with others.  This lessens my feelings of lonesomeness and isolation.

My hobbies also serve to relax me and thereby help me to deal with stress.  I am far less tense when I am watching the cheerful little birds eat and bathe in my backyard than when I am thinking about the household chores I have yet to find enough energy to finish or the upcoming social events I might miss due to my illness.  I can feel myself unwinding as I watch them flutter about and sing as if they don’t have a care in the world.  This type of rest and downtime is important in the highly stress-filled world of chronic illness.  

Most importantly, though, I find my hobbies enjoyable.  All of the benefits that result from engaging in my hobbies are of great profit, but in the end, if my hobbies were not fun, I likely would not pursue them.  I take pleasure in reading the latest fiction novels, spotting a rare bird, cheering on my favorite basketball team (Wisconsin, at the moment), and completing a difficult crossword puzzle.  My chronic illness centered life is a difficult one to bear, and these small activities take me away from the hardships for a time and make me feel “normal.”  They help me to remember that I am not just my illness.  I am a thinking, feeling, whole human being with passions and interests that have little to do with my illness.  That is a valuable thing indeed!

#HAWMC Challenge Day 21: Reflection

Note: The prompt for today was to reflect on our chronic illness journey.  As I just marked my one-year anniversary with gastroparesis a short while ago, I believe it is appropriate to share my thoughts from that day.  This was indeed a day of reflection.  My only additional remark here is that I have far more hope now than I once had.  I hope for a cure, certainly, but more than that, I have hope that regardless of the number of days I am granted on this earth, and no matter what the circumstances of those days, I will pass them with grace, purpose, and gratitude.  I hope and wish the same for all of you.

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Please forgive me if I am a little "off" today. I don't usually remember dates; I am actually really bad about that. So, I did not think I would remember this "anniversary." That is pretty foolish of me. Try as I might, I cannot forget that it was one year ago today that I was diagnosed with gastroparesis - and my life instantly changed forever. Seems like 10 years ago. It is funny; this year has been both harrowing and uplifting.

I know there might be some right now who are thinking, "Oh, no, she's talking about her illness again. That's all she ever does." But how can I not? It is my constant companion. The physical and mental aspects of this disease are unimaginably bad, and I do not believe anyone who has not experienced it first-hand can truly understand. Physically, I battle with much pain, exhaustion, and weakness. Mentally, there is isolation, anxiety, stress, and depression to fight. And it never goes away. There is not one single day where I wake up and do not have to face this. There is never a break, not even for a moment. Every morning I wake up and know that though I am hungry, if I eat, agony will follow. Every day I try to balance my hunger and nutritional needs against that pain. We live in a world centered around food, so that is tough. It is everywhere. It is on my television and on my radio; it is on billboards and in magazine ads; it is at every social gathering. It is in my own house. Normal people eat. They eat three entire meals a day - but those of us with GP cannot. And every time I take a bite, I feel like a complete failure.

I sometimes fall into the trap of believing that because I occasionally give in to my food cravings, and take a mere bite of something, I am weak. How can something that is a basic need for every human being cause me such agony? Why do I feel like I have somehow failed because I want what every person on the planet wants? It is not a case of eating too much and then regretting it; it is taking a bite - a single bite - and then wishing I could take it back. Food is a basic need, and yet I am denied it by this cruel disease. I likewise fall into the trap of believing that because I cannot always keep up with daily chores, or work a full-time job, I am lazy. But I know people who suffer from this disease who are too weak physically to even make it through their daily hygiene routine. Many truly expend every ounce of energy they have just trying to fight the pain and nausea. Are we weak? Do we lack willpower? In what world? Why should any of us ever have to feel that way? In reality, we are stronger than most. Do you know how much effort it takes to resist food when you are literally starving? Do you know how physically exhausting it is to try to tackle even the most basic chores when you have been fighting nausea and pain all day? That takes a special kind of willpower and strength that (I hope) most will never experience. We are truly warriors.

Beyond the physical aspects, there is much mental anguish associated with a chronic illness such as this. I am mostly confined to my home and can hardly ever leave. I "joke" that the only time I go out is to medical appointments - and yet, that is the truth. I do not travel or "vacation"; I miss my child's events; and I endure much guilt because I cannot attend even the most important family functions. But I have it better than most. Many people I know no longer have any family support, and their friends have deserted them because they cannot participate in the social activities they once did. Yet, when we mention this, when we talk about feeling alone and isolated, we are labeled "whiners" and "complainers" who are simply seeking pity. Again I ask: In what world? We are incredibly strong to be able to endure this day upon day - and still have the grit to wake up and do it all over again the next.

This disease is merciless, and it has made for a rough year. But as difficult as it has been - still is - it has not been entirely darkness and gloom. When I first came home from the hospital (with no clue as to how difficult things would be), I was forced to accept assistance from family and friends. I had no choice; I simply could not manage daily life without them. This was a new experience for me. I do not like being "helped." I like to think of myself as self-sufficient. But this acceptance of help had a strange effect on me. It softened me. It forced me to experience humility and dependence on a level previously unknown to me. It made me view my life and the people in it quite differently, and it marked the first step down a very different path for me, the beginning of many changes.

I have never told anyone this, but a short while after being diagnosed, I wrote letters to my family members and close friends, telling them goodbye. For the first few awful weeks after being diagnosed, I was unable to imagine I would still be alive at the end of a year's time; truly, I did not think I would last a few months. Seemingly overnight, I was thrust into facing just how fragile life is. This realization, coupled with the kindness shown to me by family and friends, made it possible for me to finally express my deepest feelings for the people in my life. For the first time, I understood that they needed to know the part they had played in my life. I needed them to know, before I left this world, that they had made a difference; that they had meant something to me; that their kindness and love had mattered in my life. Writing those letters was very difficult, but necessary. To this day, I have been unable to write these letters to my husband and my child, the two people who matter most to me in this world. Maybe in time, I will grow brave enough, but today, I still cannot face the thought of leaving them.

In any case, the letters were another step in my journey down this difficult path. But something even more eventful, more eye-opening, happened after I wrote those letters. Somehow (through God's grace, I believe), it occurred to me that I should try to find others who might be experiencing the same illness. I was confined to my home, and so I was limited, but I thought perhaps I could find others online. I did -- and what a world these support groups have opened up to me! They have truly saved my life.

I have gained much knowledge about my illness from support groups, of course, but I have gained far more. They have given me the courage to share my personal story in a very public way, which has helped me immensely. It has shown me that I do not need to hide. I can open up to others and the world will not end. I have received support, caring, and kindness on a level I never knew existed. I have made friendships that will last a lifetime. The people I have met in this "virtual" world have shown me more commitment, dedication, and acceptance than I could have imagined. Because of this otherwise wretched disease, I have met beautiful people, and I have opened up to them and others in my life in ways I previously thought impossible. That is a very good thing.

And that is not the only thing I have gained this past year. Over the course of this journey, I have developed a passion and purpose in life that I never even knew I had been missing. I have seen unimaginable suffering and need. My eyes have been opened to it. I am often overwhelmed with compassion and concern for the people I have met. They have touched me deeply, and I want to help.

This is a tough anniversary for me. I have mixed emotions about it. I am sick; I am not getting better; and I know I must face this devastating disease every day for the rest of my life, however long that may be. But it is a good life - one worth living, one worth fighting for. And there are people in it who matter, who count on me, and who love me. This gives me hope and strength to go on. It gets me through each day.

#HAWMC Challenge Day 20: Travel Time

I have always wanted to go to the Galapagos Islands.  I am an animal lover, and the unspoiled nature of this destination makes it irresistibly appealing.  Living with a chronic illness, however, makes an already difficult trip such as this mere fantasy, I suspect.  I will likely have to settle for something a little closer to home (perhaps Ocean Isle, North Carolina, one of my favorite places).  Traveling with a chronic illness comes with some unique challenges, but there are several preparations one can make to ensure the trip is a little more tolerable.

To begin with, you want to make certain you are physically able to endure the trip.  You might consider scheduling a doctor’s visit shortly before embarking on your vacation to ascertain whether there are new or serious symptoms that would prevent you from travelling.  We all hate to cancel or postpone plans, but if those plans become a threat to your health, this should not be ignored.  If you are unable to travel to your originally planned destination at the appointed time, perhaps you could consider staying a bit closer to home, postponing your trip for a bit, or even having a “staycation” instead.

Once you have established that you are indeed going to embarking on your adventure, there are several things that can make travelling easier.  You might consider researching the area where you will be staying to make certain you are aware of the location of all relevant medical facilities, just in case you should need to avail yourself of their services.  Review the local urgent care and emergency facilities in the area and verify that they will accept your insurance and can meet your needs.  Make sure there are pharmacies in the area that will work for you as well.  Inform your regular doctor that you will be travelling and let him/her know that you might need to get in touch via telephone or e-mail in the case of an emergency.  Also make certain the hotels, attractions, and venues you will be visiting will be able to accommodate any special needs you have.

In addition to scoping out the area, confirm that you have plenty of up-to-date medications and supplies with you (perhaps twice the amount you anticipate needing) and are not in need of refills.  If you will be separated from your luggage, keep your medications with you in their original prescription bottles or containers.  You do not want to risk your medications being lost with your baggage.  Bring a copy of your prescriptions, too, if this is possible.  Also, consider bringing a written record of your (brief) medical history or a note from your physician describing your condition and various medical needs and wearing a medical alert band for the duration of your vacation.  These measures could be of great help to you in the case of a medical emergency.

There are several things you can bring with you during the actual travel portion of your trip that might make your life easier as well.  Make certain you have plenty of “disease-friendly” meals and snacks on hand just in case you are unable to access these types of items during travel.  Travelling already puts additional stress on your body, and you certainly do not want to find yourself in a situation where you exacerbate this problem by having nothing tolerable to eat and/or drink.  Consider bringing games, reading materials, music, videos, or any other paraphernalia that will help you pass the time.  Such forms of distraction can relax you and keep you from focusing on the hardships of the trip.  Allow extra time when travelling as well, as you might need to stop more frequently than anticipated for rest, bathroom breaks, and exercise/movement. 

Once you have arrived at your destination, make sure everything you need is in place, in working order, and suitable for your needs.  Remember to get plenty of rest, drink plenty of fluids, and plan for plenty of “downtime.”  Make sure those travelling with you are aware that the added stress of travelling can take a toll on your body and that you do not want to push yourself too far beyond your limits.  Restrict your outings and activities to what you can bear, and be willing to adjust your plans as necessary to accommodate your needs.  Be flexible!  

We could all use a vacation every now and then to recover from the demanding, stressful world in which we live, and though travelling with a chronic illness poses some interesting challenges, these can be minimized with a bit of planning and a willingness to bend a little to the needs of your condition.  Go out and have some fun – just be reasonable and take care of yourself in the process.

#HAWMC Challenge Day 19: Stress

Everyone must deal with stress from time to time, and that is not necessarily a bad thing.  Stress can actually be beneficial when it is short-term and low-level.  It can boost your energy and memory, act as a motivator, and even enhance your physical strength.  But those of us with chronic illness often battle prolonged stress, with few or no breaks, and this can be quite detrimental to our health.  There is a growing body of evidence that indicates this type of stress can lead to serious health issues such as heart disease, migraines, stomach problems, high blood pressure, and depression.  In order to avoid, or at least minimize these possible risks and effects, it is important to know how to recognize and manage potentially harmful stress.

Coping with stress can be particularly difficult for those of us living with chronic illness because of its long-term and serious nature.  Chronic illness comes with additional stressors that most other people do not face, and there is rarely a respite from these.  Diagnosis is often accompanied by fear, confusion, and disbelief.  Some of us experience anxiety because we feel we have not been given a proper initial explanation of our condition or enough information to manage it effectively.  Conversely, there is frequently an overload of information to process regarding our numerous medications and the complex medical routines we must follow.  We are often shocked by the overwhelmingly difficult lifestyle changes required of us.  Upon initial diagnosis, many of us are confused and/or upset about the nature of our illness, its causes, its symptoms, our prospects for treatments or a cure, and the measures that will be required of us to accommodate the effects of our illness.  We fear what the future holds and sometimes even attempt to deny the existence of our disorder, hoping that it will somehow magically disappear. 

There are other problems that contribute to our anxiety as well.  It can be difficult for some of us to find a doctor who can (or will) treat us, and we must sometimes interact with several different physicians who manage our care.  On occasion, we receive conflicting advice and recommendations from the medical professionals providing for our treatment.  In times of medical crisis, we face decisions about whether it is appropriate to treat our illness at home or whether it is best to see our doctor or perhaps visit the emergency room.  Many of us struggle to find medications and treatments that work for us and must determine this through trial and error.  Once we find helpful medications and treatments, we may face difficulty in gaining access to them and at times must battle with insurance companies who deny us coverage or physicians who hesitate to prescribe them.  It can all be pretty overwhelming.

Even after the initial shock settles in, there are other factors that come into play and add to the stress associated with chronic illness.  Besides the hardship of dealing with the day-to-day management of the actual symptoms themselves (pain, nausea, dizziness, headaches, etc.), severe symptoms can eventually interfere with one’s social life and even jeopardize one’s career.  Friends and family members may have unrealistic expectations about what a chronically ill person is capable of, and often, we ourselves have these same unrealistic expectations.  We are regularly too sick to participate in social activities, and we feel much guilt over our withdrawal from social functions and gatherings we once found enjoyable.  Loved ones sometimes seem content to carry on without our participation.  We may begin to feel increasingly cut off and isolated from the friends and family members we once knew.  If serious enough, symptoms can result in missed days of work and eventual unemployment, which can lead to monetary woes.  The loneliness, seclusion, and financial strain associated with these factors act as additional stressors and make it all the more difficult for those of us who are chronically ill to cope.

There are ways to address these additional stressors, though.  We can prevent or minimize many of these factors and find methods of relieving any stress that does ensue.  For starters, we can make an effort to prevent stress from occurring in the first place.  One way we can do this is by educating ourselves about our illness.  We can search the Internet, read articles, ask questions of our doctors, and seek out others with the same condition who might provide us with insight.  This can help minimize the fear of the unknown that accompanies our diagnosis.  It can give us an idea of what to expect in terms of symptoms, treatments, possible complications, and prognosis.  It can help us recognize what is “normal” for our condition and what is cause for concern and aid us in preparing for what might be coming down the road.

We can also do everything within our power to maintain a healthy lifestyle.  (I am not suggesting we can attain perfect health, I am simply recommending doing whatever we can to be as healthy as possible given the limitations of our illness.)  This might mean taking vitamins and supplements, exercising, making the most nutritious food (and/or drink) choices possible, and getting adequate rest.  All measures we can take to keep ourselves physically strong will surely help us in our fight against our chronic illness.

In addition, we can work to achieve strong mental health.  We can do our best to maintain a positive attitude despite our circumstances.  Rather than seeking perfect lives, we can learn to focus on the good facets of the life we do have, small as they may be, and be grateful for the joyful moments.  We can endeavor to manage the aspects of our circumstances that can be controlled and adapt to the ones beyond our command.  (We may not be able to go off to college, for example, but perhaps we can take online courses.)  We can forgive ourselves for our perceived shortcomings and pardon others for not understanding our limitations.  We cannot control missing an event due to our illness, but we can refrain from feeling guilty about it and recognize that we cannot “will” ourselves to be well.  Our illnesses are real, and they come with genuine physical limitations. 

Finally, we can seek help when it is needed.  We can join support groups or talk to trusted friends, family members, or neighbors about our infirmities when we are feeling discouraged and defeated.  We can focus on activities – such as reading, writing, listening to music, yoga, meditation, etc. – that distract us (if only for a few moments) from our debilitating symptoms.  We can read books, listen to tapes, or view video resources that encourage us and help us to find the means to relax and focus on the positive aspects of our lives.  We can ask loved ones for assistance or consider employing home helpers/aides to lend a hand with household chores or other tasks we have difficulty completing.  Perhaps we can identify government and charitable programs that might be able to ease our financial burdens.  

We may not be able to avoid stress entirely, and I am not sure this is even advisable, but we can find ways to fight the stress with which we are confronted due to our complicated and sometimes overwhelming circumstances.  As chronic illness warriors, we face a daunting battle against stress –but it is not one we must necessarily lose.