The following is an editorial written by an acromegaly patient.  The opinions, beliefs and viewpoints expressed in this article are those of the writer’s.  Their beliefs and viewpoints are strictly their own, and do not necessarily reflect the viewpoints of Acromegaly Community, Inc, or any of its agents.

Raymond Carawan
Member
AcromegalyCommunity.com

 

Acromegaly is a very difficult disease to live with, both for the patients and for their loved ones. I was diagnosed with Acromegaly just days before my 21st birthday. I felt its effects long before I was diagnosed, however. Shortly after I was diagnosed, and as time was leading up to my surgery, things just got tougher and tougher as my blood levels climbed higher and the doctors found more and more Acromegaly-associated problems. I felt alone and scared just as I had for many years beforehand; but this time was different. Before I was scared because I had no idea what was happening to me. Now I was scared and alone because I knew what was causing years of problems and heartache. Now I finally had to figure out how to face the specific demon that had been haunting me for such a long time. See, there are many aspects to the effects of Acromegaly, including the physical, mental, and emotional issues. Beyond that, the emotions before diagnosis are just as tiring, but far different than those after diagnosis. The severity of impact from these physical and emotional aspects vary from one acromegaly patient to another but we all face a degree of each of these aspects.

For me acromegaly came in and out of my life for a while. I have never considered myself to be a "normal" individual, having overcome a lot of trauma in my life in the first place. These traumas are part of the reason why it is difficult to pinpoint exactly when I started to feel that something just was not right. That said, since I have been diagnosed and now know what acromegaly is, I can piece some things together.

I was about 12 years old when I first started to feel bad. It was not too terrible but enough for me to notice.  My symptoms included painful knees, dizziness, and fatigue. These symptoms were nothing to really raise an eyebrow at, but for a 12-year old it did offer unusual difficulties.  The doctor explained it away by saying it was just my growing, or that perhaps bones were growing faster than cartilage could. Then, at 16 years old, things got worse. I tore my rotator cuff and labrum (shoulder).  What has even harder was when I started to have what was, at the time, considered to be non-epileptic pseudoseizures caused by post-traumatic stress disorder, mixed with current day stressors. In other words there was no medical reason for me to have these seizures except for the way my brain dealt with stress at the time. It was all for psychological reasons. The scary thing is that several of these psychological seizures almost killed me.

When we finally went to see some specialists, they knew more about what these seizures were from; and told my parents that they were NOT faked however due to the rare nature of these kinds of seizures, many hospitals did not know what they were or how to treat them, so I would just be told to stop faking it.

At the end of one school year, I went home as the shortest, skinniest kid in the whole school, and then the following fall, I came back to school as the tallest and still lightest kid in school. The doctors still said that all of this was normal growing. Keep in mind now that when I was young, doctors said that I had a failure to thrive, and was malnourished.  Then, just a few years later, I turned 17 and seemingly all of a sudden I gained a whopping 80 pounds in less than 3 months, this was attributed to my anti-seizure medication.  When I did complain that I did not feel well, I was told by many healthcare professionals to stop being such a hypochondriac.

Unfortunately, my problems progressed for the worse, both inside and outside the doctor’s office. It felt like no one would listen to me, or they were simply unable or unwilling to hear what I was saying. As living situations became more difficult, I found it hard to even maintain good relationships with friends and family.  Before I knew it, I was unable to live with anyone long-term, due to a lack of understanding and support, and found myself homeless.  That said, I could not even maintain life in the homeless shelters.  I was kicked from homeless shelters because I could not keep up with the chores and they did not understand me. They told me before they kicked me out that they were tired of hearing my complaints and excuses. They said they did not know why I kept seeking help when I was a healthy young male. I was so frustrated because I KNEW something was very wrong with me and yet at the same time, people’s comments made a lasting impression.

Even though, at the bottom of my heart, I knew something was terribly wrong, my friends, family, and especially my doctors had succeeded in planting that seed of doubt. What if they were right?  Maybe there is something wrong with me mentally that is making me think I have all of these problems? I was down and out on my luck. I stopped going to the doctor, I stopped complaining, and simply tried to live as best I could. My suffering only went downhill and I was no longer suffering only physically, but emotionally and mentally too. I began to wonder what kind of person am I?? Do I belong in this world?? Do I matter? Do I make a difference? Is there any hope? Is there anyone out there like me? Sadly, when I answered those questions to myself, my answers were usually NO. During high school, I had to sit through embarrassing parent-teacher conferences and principals office meetings where I had to listen to complaints about my odor, even though I bathed everyday and used deodorant several times a day. I could not help it, and did not know why that was happening. I had few friends because of this.

As I grew older, I started noticing changes to my appearance. I first noticed it when I started noticing the funny looks from people, and those turned into comments about my appearance and scaring little children just by looking at them. I am a gentle giant after all, so this was hard for me. Even after meeting both of my biological parents after years, neither would help me with my living situation, forcing me to move in and out of homeless shelters because they thought I was lazy. By this point it was difficult for me to try to explain how I felt and what my symptoms were, because I knew I would not receive pity.  More likely, in the best case, I would only receive a doubting expression in return. I know how I feel and what hurts and aches, but to try to put something so complex into words for people not living it, well I didn’t fully understand myself, so explaining my issues to others was next to impossible. The only way for them to understand how I felt was if they could actually feel it themselves; which obviously they couldn’t.

The bottom line is that, long before I was even aware of it, acromegaly had destroyed my life. It tore down my self-esteem and self-worth. It made me feel alone before and after diagnosis. It destroyed my relationships with what I once thought was my family. It wore down my mentally. Acromegaly stole my youth right out from under my feet. It destroyed different joints and organs and such in my body. Acromegaly negatively impacted every single solitary aspect of my life before I even knew it was happening. I felt alone, worthless, beaten, betrayed, crazy, sad, old, and like dirt.

Shortly after being diagnosed just days before my 21st birthday, I found out about the Acromegaly Community. I found this non-profit organization through facebook. At first I was a little wary of the site as I had never been one where I would divulge personal information to people that I didn’t know, since in the past, the kinds of reactions I got when I did try were too much to handle.

I began to find that these people were in a very similar situation to me and they could relate to what I was going through. Through the help of Dean Morgan, I was able to get in contact with the creator of the site Wayne Brown. Since talking to Wayne over the phone and on the community I have made countless friends going through the same ordeal. Directly and indirectly, the Acromegaly Community has made a tremendously positive impact on my life.

The members have given me hope, guidance, direction, and information. I have learned what it is like to feel like I matter. I have learned what it is like to feel comforted by the same people that need comforting for the same issues. Most importantly I have learned what it is like to truly be part of a community that shows nothing but pure heart. The heart of this community is the biggest heart I have ever seen in today's society. The way the members support and guide one another is truly amazing. It goes beyond friendship. All of the members love one another and love their Acromegaly Community.

We all have similar stories to tell and we are the ONLY ones that truly understand one another and what we are going through. They helped me understand why I am the way I am, and to be happy with it. When everyone in the outside world has turned their backs or showed that they can't understand and will always see you differently, the Acromegaly Community is just a computer click away. Acromegaly Community has also taught me how to be able to help others and be an inspiration even if I am still going through a rough time myself. Acromegaly Community is the definition of humanity and community at its best. Further, I can honestly say that had I not received a diagnosis of acromegaly and found the Acromegaly Community I don't know where I would be at today, but I do know that my world without the Acromegaly Community is not a world that I would have enjoyed or benefitted from. Thank you Acromegaly Community and its members for helping me survive this terrible world and for making it a little more enjoyable.

The following is an editorial written by an acromegaly patient.  The opinions, beliefs and viewpoints expressed in this article are those of the writer’s.  Their beliefs and viewpoints are strictly their own, and do not necessarily reflect the viewpoints of Acromegaly Community, Inc, or any of its agents.

Wayne Brown

AcromegalyCommunity.com

 

 

Well the end of June is upon us, meaning that graduation season is ending, and next life-chapters are starting. I have always found this time exciting for the graduates, watching as they figure out how to apply their book knowledge into a successful life.  This year was particularly exciting because I was honored to be invited to several graduations, and I must say that I am impressed with what the future generation holds.  When I was in my teens and early 20’s, I certainly do not remember having the kind of drive and self-determination that I see in the coming generation, and I cant wait to see what their realized potential actually looks like as the next world leaders and news makers.

All of these graduations got me to thinking about the idea of what makes success?  What separates the people who are seizing every moment life has given to them, as opposed to those who are trying to simply tread water… or worse, simply trying to not drown?  As a passionate life observer, former teacher, and now leader of a charitable organization, I have seen the spectrum of personalities throughout my own life.  When I started to actually think about who is doing what, I noticed several similarities.

For the record, I am not trying to write another rah-rah book telling you that you can do it, if only you decide you want to succeed badly enough.  If success were as simple as deciding you want to be happy and personally satisfied, I think most of us would make that choice.  Strangely, not all of us would choose happiness, but I do think that most of us would.  Now, my belief is that we all have at least a little say in whether our lives have happiness in them.  Also, please remember, a successful life is a personal definition.  A person who is focused on altruism would not necessarily be excited to receive $1 million.  An athlete may never make a $100 million, but would be thrilled to be a role-player on a team that won the championship game.  And money?  Well, if you are making $20,000 a year, $50,000 seems like unfathomable money, but if Bill Gates were asked to live off of $50,000 a year, he probably would not have a clue how to manage.  That being said, I am sure he would forfeit every penny he ever had for the welfare of his family, which is a total different aspect of success.  Your definition is just that- YOUR definition.  The question for this article is not how to succeed for your neighbor’s happiness, but for your own.

Now, just to get the discussion rolling, the first category of life success I want to examine is the person who is born with every opportunity to make their lives as happy as they could imagine, and they just push it away.  It is not often you see this, but it happens.  These are people who you watch, and it almost seems like they are fighting against their own happiness and success.  These are kids who were raised in loving homes filled with encouragement, where they don’t want for shelter or plentiful food.  They go to good schools where the teachers are eager to help them succeed and help them flourish.  Yet, in spite of all of it, they seem almost deliberate in choosing life’s hardest path.  Yes, life will always throw us tough pitches all through life, but these are the kids who are most equipped to handle it, and still they almost invariably choose to get hit by the ball, rather than take a swing.  Why?  I don’t completely understand, but I am starting to sort out some of the possible reasons.  Success is funny… it is not impossible to achieve, and happiness is far from elusive; but it does take commitment.  Simply waking up every morning is not enough to complete a life; you need to actively work to achieve what makes you most happy.

I am the middle category.  I started on path one before I got back on track.  I had a super supportive family, and a great education… but I was a difficult child, needing to learn everything the hard way, until eventually, almost in spite of myself, I chose to make better choices to get my life back on track.  I grew up in the “ideal” suburban middle class society, and rather than embrace life’s opportunities, I chose to feel suffocated!  Just like in the lyrics from Rush’s Subdivisions, “In the high school halls/In the shopping malls/Conform or be cast out.”  Well, I was not willing to conform, so I went against the grain and it seems in hindsight that I had to almost fight success- and I did!  In a weird way, I was successful at fighting success.  It was not until I hit my late 20’s that I discovered that poverty… well, its just not all that much fun!  I went back to college for serious this time, and worked my butt to the bone.  Between college and work, I put in no less than 100+ hours per week doing something for someone else, all while battling an undiagnosed disease that added to the exhaustion.  Good decisions and a blind work ethic got me back on track, but I got very lucky that I was able to play through a whole lot of pain.  I realize I was one of the lucky ones that I got another chance to fix my issues- but that is why I say that no opportunity can ever be squandered, because you don’t know when the next one will arrive!

The third category is the group I believe needs to be celebrated.  I have been working on this article for several days now, and have thrown away several drafts because it wasn’t quite right.  The other night I figured out why I was failing.  I had great focus on the failure and the catch-up in success, but I was missing the massive success of people who beat the odds.  And I found the missing piece while I was attending a high school graduation.  This young man has been one of my major inspirations since I met him several years ago.  He came to us in the middle of 10^th grade, around January/February as a refugee from western Africa.  “Franklin” barely spoke English, but he clutched his French/English dictionary everywhere he went.  When I saw him in the hallway, it was always “good morning/good evening sir.”  When I told him he could call me Mr. Brown, he informed me that he could not because I was “a man of education, and I must show you respect.”  Franklin was ravenous in his learning.  At the time I was teaching in an impoverished, underfunded city school, and I was concerned about my students’ ability to succeed on the state’s hardest standardized test, so I volunteered my time to students who wanted extra help getting ready for the state exam.  I was available after school or during lunch (glad the union never found out!), and he was at EVERY SINGLE study session that I offered.  He asked questions in and out of class, and had a genuine curiosity that most teachers only dream of encountering once in a career.  The day before the state exam, he came to me out of concern that he might not succeed.  I told him not to worry, that this is a two-year test, of which he caught 1/2 of one year’s material!  Take it as practice.  If you succeed, fantastic!  If not, you definitely will next time.  He smiled and liked my plan, but told me he really wanted to pass.  Trust me, Benjamin, I knew that!  On test day, he was as ready as he possibly could be, and was still one of the last to finish the test.  For what its worth, I think he got the highest grade in the school.  Some people are determined to succeed, no matter what life throws in their way!

Now I don’t know exactly what Benjamin’s life was like before he walked into my life, but I do read the newspaper, and occasionally watch international news on television.  I would imagine his easiest choices in life were far more difficult than my most difficult.   After the school year, he applied to one of the prestigious private high schools in the area.  While they accepted him into the school, they informed him he would have to repeat the 10^th grade.  I would imagine it was in no small part where he went to school that year.  The school where I taught him has actually been shut down because of insufficient academic success, but he came out of that school with an amazing education, because that is what he wanted to get!  When the private school told him he needed to repeat, I told him it was nonsense, and he got accepted into Buffalo’s City Honors, a school ranked #9 in the nation, and #1 in the northeast United States by the Washington Post. The private school’s loss was the city’s gain!  In September of 2010, he asked me if it was ‘okay’ that he wrote an essay about me.  I said of course it is, but what is it about?  They were asking them to write about one of their heroes.  I can tell you I was so proud that I had to dry my eyes several times!

Last week, not only did he graduate, and on time, he received the school’s Teachers Award for academics, positive attitude in the school, and being a model student based on City Honors’ tremendously high standards.  I was so proud! Now, Benjamin could have bemoaned the private school, or used it as an excuse to fail.  Instead, he showed them that they lost out. Benjamin is a young man who is going to grow into an exemplary adult, and I can’t wait to see what he accomplishes in life.  I am honored that he considers me an important part of his past, and thrilled that I can be part of his future.

Now, for my other students who have been kind enough to come back and honor me by telling me their success stories, trust me when I say that I could tell all of your stories in equally vivid detail.  I am very proud that I was able to take all of the hardships I have suffered in my own life, many of which were self-inflicted, and help inspire others to get more out of their own lives than they thought was possible.  Success is sometimes as simple as exceeding your own short-term goals, so the next goal can be grander and more exciting!  There should always be something new to chase.

I have a million other stories for all three of the above categories, but instead, lets get into some of the goals to focus on if you want to be in groups 2 or 3…

 1. Don’t fear them, failures in life are a certainty. If you show me someone who has never failed in life, I will show you someone who has accomplished NOTHING!  In Babe Ruth’s best year playing baseball, his batting average was .393.  That means he failed more than 6 out of every ten attempts!  Want more proof?  Jim Kelly, Fran Tarkenton, and Dan Marino combined for an inauspicious 0-8 in Super Bowls, yet all of these guys are in the Hall of Fame, and are considered amongst the best of their sport.  Look at the Detroit Lions’ Barry Sanders.  His team never won a trophy ever in his career, but his work ethic made him one of the most respected ever to play football.  Here is a quick test for whether you are trying to accomplish something important.  Is someone else doing everything possible to stop you?  Any goal worth achieving is going to be fraught with challenges, and people working hard to stop you from succeeding.  The only way they win is if you quit.  Trying and not succeeding doesn’t mean you failed.  It just means you need to try a new way to succeed.  Yes, there is a chance you will never win the accolades you deserve, no matter how good you are, but you know you made a difference.  In my teaching career, I never had a principal say I did a good job- heck, I got yelled at a lot through my career.  But… I can point to a lot of former students who have gone on to massively successful lives, many of whom think I am at least part of the reason.  You don’t need a trophy or an accolade to know you did good.  I stopped teaching, not by my own choice, but if I had to do it all over again, I wouldn’t change a thing.  I love my students, and I am honored to have known them and helped them on their life paths.  That IS success.  It is when we simply paralyze ourselves anticipating failure- well that just guarantees our failure!  Don’t make yourself a self-fulfilling prophecy.

 2. Who are your teammates in the game? Who are you choosing to surround yourself with?  While Barry Sanders couldn’t choose his teammates, and in spite of the fact that he was on some BRUTAL teams, he went to the Pro Bowl (All Star Game) every year he was in the league.  We don’t get to pick our co-workers, but we have the option to be the best at our profession, or slip into the endless sea of mediocrity.  In today’s economy, which do you think is the better choice?  Don’t be afraid to be the hardest worker at your job.  Sure, you may not get the huge raise you deserve, but being good at what you do, and having pride in your work can only help in the long run!

 3. Who are your teammates away from the game? Everyone has challenges throughout their lives.  If you are dealing with the effects of illness, that only serves to heighten the stress.  If the people around you are tearing you down, you are better off with them not in your life!  Simply put, analyze who your friends are, amongst the people you are closest to.  If you were going through a bad time in your life, who do you think would truly help you through the storm, and who causes you more aggravation than they offer strength?  If you answer HONESTLY, you may surprise yourself.  Your best friends might be your biggest stress providers.  These are the people who you are always there to help, but either they grow conspicuously absent or, even worse, hinder you when you most need a boost.  You may have other people in your life (co-worker, buddy, neighbor, etc.) who seem to instinctively know when you need a pick-me-up, and they just know what to say to cheer you up, or they are actually there to lend a helping hand.  The best thing to do here… if you want to be a 2 or a 3, shed the dead weight.  There have been several times in my life where I realized I was surrounded by toxic people and making awful decisions.  Sure it is scary to have no friends for a time, but there is not one person I count as a former friend that I would be better off if they were still in my life.  The friends that I do have today?  Well anyone would be lucky to know them.  Takes hard work and difficult choices, but in the long-term, it is worth it.  If you cant get rid of someone because they are family, your boss, or some sort of other bond you cant disconnect, you are best off to limit your contact, and try not to internalize their toxic feedback.  They are probably #1’s, or feel that they are #1’s, and truly try to prop themselves up on everyone else’s shoulders.  You don’t need that!  Remember, just because someone calls you their best friend, doesn’t mean they are truly there to make your life easier and/or happier.  And most important to remember… to have good teammates, you must be a good teammate.

 4. Have incredibly high standards for yourself! If you have unwavering standards for everything you do, you are less likely to ever do inadequate work- or at least not know how to fix it.  Does it mean you will not be criticized?  NO!  If you are contributing, someone will be there to point out why you failed.  But if they are not getting the results you want, who cares?  When I was in my second year of teaching, my principal yelled at me because I was not going to the mentor she chose for me (coincidentally, her friend).  In the previous year, I had 80% of students pass the state exam, with another 10% on the bubble, in a weak academic school district.  This guy NEVER had a student pass the exam.  Why would I want to model his work?!  Just because others accept second best doesn’t mean you should.  Always try to be the best version of you possible!  Like I mentioned earlier in this article, this is the fourth version of this article.  Numbers one through three were completed, but when I went to edit them, I disapproved of enough major themes that they required a restart.  Its not that the other articles were bad, they just weren’t saying what I wanted them to.  So I let the ideas cook.  Inspirations came in bits and pieces, with the capper coming last week- and I realized it one morning at the gym… feeding in to #5…

 5. Know what is going on around you all the time!  Most of the time I am inspired to my best ideas in a way that most sane people could NEVER make a connection, but I do! This is why I keep a pen and paper with me most of the time, and when I don’t, I will email myself the idea in my phone.  Great ideas will vanish, and if you don’t nurture your best ideas, you will stop looking for them.    If you want your own great ideas, pay attention to the life going on around you.  Being a good listener will give you great observations and sometimes some laughs too.  But more than that, people who want to be successful at interaction know they need to pay attention to what others communicate- both verbally and non-verbally.  I love dogs, and will play with all of them that let me… In most cases, a dog will warn you before it attacks, which is a trait that is far nobler than most humans.  Try to be aware of who is getting ready to attack you before they pounce.  If you can try to neutralize other people’s harshness before it is realized, there is a lot less cleaning to do.

 6. Try to put out the fire before anyone smells smoke.  I already told you that if you are working to be successful in life, or you already are, attacks are inevitable.  Sometimes a hit is going to connect, but not hurt that bad, and sometimes it is going to knock the cream cheese out of you.  The more viscerally you react, the worse the pain.  Work to fix the problem in a way that spares all people’s feelings, and move past it as fluidly as possible.  While it may seem cathartic to get down in the mud with someone whose natural instinct is to fight dirty, you are fighting on their turf.  Keep it clean.  The happier your enemy walks away, the greater the likelihood they will leave you alone next time.

 7. Your actions speak volumes about who you are. I have never been at a convenience store and seen a man in a tuxedo buying a lottery ticket, and conversely, I would never hire an accountant or lawyer who came to work on a weekday wearing torn jeans, a tye-dye t-shirt, and reeking of… um… incense.  I don’t care what (s)he wears at home, but when you are in public, your appearance speaks before you can.  Teaching your child that they can steal because the chain store has more money than you do, or that its okay to pirate music because the artist is rich is doing your child a disservice.  As a parent, you are best to teach them that this man or woman is to be respected because they have reached the zenith of their career, and if you work really hard, perhaps you can make a good living doing what you love to do.  Isn’t that a great success? 

8. Not all of our circumstances are by choice but our response is our own choice!  When you are faced with a situation good, bad, or otherwise, the choices you make will determine all future decisions in that regard.  A shortcut now may only double or triple your work to catch up tomorrow.  Have I ever chosen to watch the big game rather than do the work due the next day?  Of course!  But if you are going to be successful in life, your best option is to do your work before the game starts… otherwise; you had better be ready to start the work the second after the game is over.  People who are success-driven are always success-driven!  Imagine going to school and saying ‘I only want A’s in History, English, and Gym.’  Of course you want A’s in Science and Math too.  If that is hard for you, well, I guess you just have to work harder.  Maybe even with a tutor you still only get B’s and C’s, but think what grade you would get without the help.  Sitting around bemoaning your bad luck does not fix your failure.  You need to proactively make your own luck better!

9. During a storm, make sure you have a strong buoy. One of the major reasons I believe I am successful today is because of all of my loved ones.  Yes, my family is very important to me, but I love more than just the people genetically bonded to me.  When I was in the worst of the worst of my horribleness, I was lucky enough to have close friends that let me hold onto them, sometimes very tightly.  Pick the right buoy though.  Someone who looks strong, but has a history of collapsing, well all they are going to do is take you underwater with them.  I can honestly say that I truly love my closest friends.  And the only people I consider to be amongst my best friends are the people that have been as strong as I have been weak, and never left my side when I needed them.  The trade off is that sometimes your friends need you too.  You need to be as strong for your friends in their time of need, as they were for you. If you are lucky enough to have one person like this in your life, you are lucky.  I have several.  And yes, I know I am beyond any measurement of luck.  Just remember, if you want it, you need to be it!

 

Life is filled with adventures.  Some are good trips, some are not so good, but all offer plenty of excitement for those brave enough to take the chance.  No matter where our path starts, we all pick the ending. Plenty of millionaires and billionaires were born into poverty, and there are a lot more people born into exaggerated wealth that die penniless.  The proof is there.  Even if your circumstances are beyond your control, successful people focus on what they can control.  When the challenges are not your fault, and you feel like you are struggling to not drown, look for that first step, even if it is just a little one.  I have known the depths of human despair, and through blind determination and strength that no three people should be asked to come up with, I actually dug myself out of the hole.  I didn’t do it on my own- that would have been almost impossible.  I had amazing people around me, and we all made ourselves better.  Now, I spend my days helping more people than I could possibly realize.  I will never have the big house on the hill, but when I think of the people I have touched in my life, well I have the success I want from life.

At the end of the day, how is success measured?  Well, if you ask 100 people, you will likely get 1,000 different answers.  Figure out what your definition of success is, and go for it!  Success is achievable for all of us who want it.  The question is not whether you want to be successful.  The question is whether you are willing to do what is necessary to get to your land of success.  I fight to stay there every day, and I hope to see everyone here soon.

Wayne Brown is the founder of Acromegaly Community; a group focused on patient advocacy, and was the lead writer for the collaborative book Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World.  He can be reached at  This e-mail address is being protected from spambots. You need JavaScript enabled to view it  

The following is an editorial written by an acromegaly patient.  The opinions, beliefs and viewpoints expressed in this article are those of the writer’s.  Their beliefs and viewpoints are strictly their own, and do not necessarily reflect the viewpoints of Acromegaly Community, Inc, or any of its agents.

Amy Marcus

Member

AcromegalyCommunity.com

 

 

In August 2010 I diagnosed myself with Acromegaly. Even when my doctor was confronted with my voluminous symptoms his response was, “I will give you an MRI if it will make you feel better.” I wish I could have been there when he got my results and found out that I was right, I had a macro adenoma on my pituitary gland.

 

During my leave of absence from work for my surgery, it was necessary for my primary doctor to provide the insurance company with my medical records. This would include my labs, physicals and especially doctor’s notes on my visits. My doctor’s notes were not only illegible but also incomplete and were of no use to the insurance company. I had to get every doctor I was seeing to send in their notes to confirm my situation.

 

This story is an example of why it is so important for all patients to be their own advocates. Regardless of why you are visiting your doctor, it is important to make sure that you keep track of your own records. Think about how many times the medical assistant has taken your blood pressure without telling you the result. To this day I still have to ask, “what was my blood pressure?” Why do they feel the need to keep this information such a big secret; or do they think the patient is not medically savvy enough to know a good reading from a bad one?

 

So as the patient, you have the right and the responsibility to educate yourself; and make sure your medical professionals understand that you in fact do know what is going on, and you want to be kept in the loop of your own health care. How else can you hold the doctors accountable? With the internet, there is nothing you can’t find out. Read up on what your blood pressure reading means. Find out the many reasons for high cholesterol, and it is more than just food that affects your cholesterol!!

 

Educate yourself and keep your own records. Write down and track your symptoms, no matter how insignificant they may seem. Record each visit to your doctor with the results of any tests, what he prescribes, request copies of your labs, x-rays etc, duplicate and give the doctor a copy to put in your file.

 

If my doctor had kept good records when I was complaining I didn’t feel well, he would have seen a pattern of symptoms and I may have been diagnosed earlier. The symptoms I had and his treatment were as follows:

Diagnosed with high blood pressure suddenly about 7 years ago it went haywire. He attributed Metabolic Syndrome. I attributed it to hormones, and was prescribed a drug for high blood pressure.  For those unfamiliar with the term, Metabolic Syndrome is a name given to aging that encompasses a variety of symptoms. Basically it is a term to describe a patient who is not aging well due to unhealthy lifestyle. So in my case I thought I was the cause of all these symptoms.

1. Diagnosed with extremely high cholesterol about same time as the high blood pressure. He attributed it to Metabolic Syndrome. Now we know that the high levels could not be attributed to diet.  I was prescribed drugs for high cholesterol, and we tried several but they had too many side effects.
2. Diagnosed with high triglycerides at same time blood pressure and

cholesterol. Metabolic Syndrome.

1. I complained of fatigue. Falling asleep at work. He had me get a sleep study

and I was put on a CPAP. No one ever tried to determine why I had sleep apnea.

I believe that sleep apnea is a symptom that needs to have a determined cause. Mine was due to swelling of tongue and sinuses due to tumor but we only

learned that after the fact.

1. I complained of trouble breathing because of bloating and distension around my middle. Attributed to Metabolic Syndrome.
2. I complained of excessive sweating. He told me to put on deodorant twice a

day.

1. Weight gain of 25 pounds over 7 years. I complained of the inability to lose weight. Diet and exercise had no effect on my weight. I continued to gain. Metabolic Syndrome.
2. Over these 7 years I was borderline diabetic, until one visit when he informed me that I do indeed have diabetes. No family history. Attributed to Metabolic Syndrome. Drugs for high blood sugar.
3. Oh and DEPRESSION, treated with lots of antidepressants.
4. Finally my last complaint. I was in his office and stood in front of him and said, “Look at me. I look horrible. I eat right and am on my feet all day. Why do I look like this? You are my age and you look the same, just some grey hair.” He says, “I have to take care of myself. Even your endocrinologist says you have Metabolic Syndrome. Let’s see what Johns Hopkins has to say.” (I had seen my endo only three times. I had been his patient for 20 years and was going to Johns Hopkins to see another endo.)

 

This is when I had enough. I was very angry. I was taking a handful of pills every day and was not feeling any better. I went online and use a symptom checker. I found Acromegaly and even though I had the enlarged tongue, feet, hands, teeth spreading, jaw growth, brow growth etc. I was still not sure. Could I have a tumor? I spent everyday combing through the same symptoms trying to find out what was wrong with me. Then during the summer I was with my niece, who is a nurse. I told her of all my symptoms and she validated all my feelings. No one else was able to do that. No one else had agreed that there is definitely something going on besides aging.

 

In summary:

1. Record at each doctor visit the time & date, your statistics, your symptoms and purpose for visit and what the doctor prescribes and why. Duplicate and put a copy in your doctor’s office file.
2. Research your symptoms and treatment and if you find discrepancies

in what the doctor has said, then tell your doctor what you found. Don’t let them tell you, “You shouldn’t use the internet, it will only scare you.” like my doctor did.

1. c. Most of all, and I can’t stress this enough, you know your body better than anyone. For six years I felt that my symptoms were from a hormonal imbalance and my doctor would not listen to me. I was right. So how do you make them listen? Unfortunately it’s with facts so you need to do your homework!!

 

 

 

 

 

 

Amy Marcus 55 year old female diagnosed with Acromegaly and Thyroid goiter summer of 2010. Had surgery October 2010 for tumor on pituitary and thyroid in December 2010. Started drug therapy in April 2011. Stopped same drug therapy because of side effects in June 2011. Going to get another second opinion later this summer on next step.

Wayne Brown

AcromegalyCommunity.com

 

 

Life happens.  In this day of smartphones, a dizzying news cycle, and endless apps designed to make us more productive, it is easy to be overwhelmed by the information avalanche.  This is why we need to be responsible patients, making sure we are actively taking good care of our own health.  Frequently in my articles and speaking opportunities, I remind patients that they need to be their own greatest advocate in the doctor’s office.  That is still very true, but what is equally important is for the patient to be their own best advocate!

As the global economy tightens, the job market gives employers greater ability to expect more from their employees at the same, or even lesser wages.  Still, just because our bosses can demand more of our time and energy, it does not mean that we can offer less at home when with our families, friends, and loved ones.  Now, as if your mountain of responsibility was not tall enough, throw on top of it your medical struggles.  Simply put, something has to give somewhere; but as the patient, you need to make sure that your health is not where the sacrifice comes to be.

Look at your health like you are building a house.  Why do the builders invest so much time in making sure that the foundation of your home is perfect?   Depending on your home, it can take almost as long to set the basement foundation as it can to build the rest of the home.  Why?  Because if the foundation of your home is weak, the rest of the structure can eventually collapse in on itself.  You need to build your life with the same care used to build your home.  The foundation of our lives is our health.  If your health is not well built, or well maintained, it weakens.  The weaker the foundation, the more you are vulnerable you are to stress; making you less healthy.  Before you know it, every other aspect of your life comes down upon you.  Your work suffers, home life is more stressful, and things are generally unpleasant.  When your work suffers, you risk your source or level of income.  When your relationships suffer, your emotional well-being suffers drastically.  Each stress in your life is another major crack in the foundation of your life.  So… lets keep your health in order.

This morning, I was confronted with the importance of advocating to yourself for your own health.  I have a smartphone with a calendar built in, and I also have a calendar on my office wall.  Why?  Certain dates are too important to be trusted to technology alone, and I want to see every important date in my face as much as possible, so I cant help but remember to do it.  One trick I use is that every other Friday, I either have to order my medication, or administer said medication.  Normally, this is easy to remember.  This month, not so much.  Work has been running me ragged, and I actually do have a personal life outside of work – sometimes!  Anyway, as the stress piled up, I forgot that today is “Shot Day.”  Boy, was I was surprised when I was heading to the office today and my cellphone told me I forgot to take my shot before I left for work today!  So what would happen if I forgot today altogether… Would being a day late kill me?  No.  But tomorrow I have a full day planned, and Sunday is Fathers Day.  Whole weekend gone in a blink.  Its amazing how easy it is to forget to do the important stuff that is not as fun to do! It makes me glad that I have reminders in my cellphone for 6am, and then again at 930pm.  As a patient, you do what you need to in order to meet your own medical needs.  After all who knows your better than you do?  As patients, we expect our medical professionals to take care of our health, but if we don’t take care of our own needs, how can we get mad at strangers when our health wanes?   The doctor is healthy, and no matter how much he or she cares, they probably cannot feel your aches and pains!

So how do we advocate for ourselves to ourselves?  #1… TAKE Y0UR MEDICATION ON SCHEDULE!  If you wait until you don’t feel so well, your body already feels sick- it just took a while for you to figure it out!  Why punish yourself?  Just take your meds on time. If your memory is an issue for you, make sure you write reminders down in multiple locations, put your drug where you cant help but find it, post yourself reminders, put it in your cellphone calendar, on the fridge, notes in the bathroom, even a string on your finger if that works for you… whatever you need to do to remember!  What else?  Keep a journal of your symptoms.  If you don’t feel well, keep track of it.  What were your symptoms, when?  Was it in relation to a medical treatment or procedure (or expected treatment or procedure)?  When you go to see your medical professional, make sure you bring your journal and share it!  Medical people are scientific.  Dates and accurate descriptions makes treatment and diagnosis easier for them.  Something that may seem unimportant to us, might be a clue to them- or a sign of some underlying new issue.  True, your doctor might think you are a hypochondriac… but if he or she is thinking that now, it is probably not a new thought; and maybe it is time for you to have a heart-to-heart with your sawbones; or tell your story walkin’… to your new doctor’s office.  It is unlikely that you signed a contract of treatment with your doctor, so you are allowed to find someone who better meets your needs!  And finally, listen to your body when it tells you something is wrong- its not lying!  If you are not feeling well, try to figure out why and fix it.  this doesn’t mean that you take a week’s medical leave because of post-nasal drip.  Lets be reasonable.  Sometimes heroes need to play through the pain.  If you feel lousy and can still gut through work, do it!  Where you can change things up are the less important things.  When you get home from work and your child wants to tell you about their day, you need to listen.  Also very important!  Where you can cut--- sacrifice means that if you can avoid it, skip the errands.  You don’t have to go food shopping today to get a gallon of milk and a stick of butter, or go to the post office for $1.80 in stamps, or, and see Auntie Shirley who you know is going to nag you about finding a husband/wife or how you raise your kids/cats.  That is the kind of stuff that can wait for a better day.  In all honesty, the errands will all go phenomenally easier if you are in a better frame of mind anyway.

So be your greatest medical advocate to yourself.  Take care of your health so you can keep the rest of your life going smoothly, which will naturally lead to better health… what a neat circle.  Do yourself a favor; after all, who deserves one more?

Wayne Brown is the founder of Acromegaly Community; a group focused on patient advocacy, and was the lead writer for the collaborative book Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World.  He can be reached at  This e-mail address is being protected from spambots. You need JavaScript enabled to view it  

The following is an editorial written by an acromegaly patient.  The opinions, beliefs and viewpoints expressed in this article are those of the writer’s.  Their beliefs and viewpoints are strictly their own, and do not necessarily reflect the viewpoints of Acromegaly Community, Inc, or any of its agents.


 

Raymond Carawan
Member
AcromegalyCommunity.com
 

Acromegaly patients across the globe are their own best advocates, and working together can provide much needed changes and medical advancements. Many Acromegaly patients believe that it is overdue for informative pieces on acromegaly to be written by someone who has acromegaly and has related to multiple acromegaly patients. With these kinds of writings, as well as testimonials from acromegaly patients then and only then can the outside world truly understand what acromegaly is and how its patients are affected. Also, the acromegaly patients need to write these pieces to gain the necessary awareness and make changes. The article below has been written by an acromegaly patient. The information also been gathered by members relating symptoms and experiences to one another through the help of AcromegalyCommunity.com.

Acromegaly is a chronic, rare, serious, and at times, fatal disease. It is caused by a tumor on the pituitary gland or rarely another location in the body. This tumor in particular causes an increase in growth hormone and a chemical igf-1 and sometimes results in other pituitary and thyroid functions. There is no known or guaranteed cure for this disease mainly due to the fact that the tumor can come back and that igf-1 can remain high even though there may not be a tumor present any longer.  That’s not to mention all of the persistent side effects and damage left behind from the acromegaly. That of course pertains mainly to those who have successfully reached so called remission in which many consider to be where there is no tumor present and the growth hormone and igf-1 have reached and maintained a normal level. Those who have not reached the "remission" stage are not so lucky however as their bodies are still taking on damage from disease. The side effects from this disease are numerous and extensive some of them come on slowly some of them rapidly, some mild and some intense, this varies from person to person and what their individual situation is. The side effects are as follows on the list below:

•   skeletal deformity(mainly in the forehead and cheek bones)

•   decreased vision

•   massive sweating especially in the hands and face

•   high blood pressure

•   possible diabetes

•   possible heart attacks..

•   organ enlargement

•   weight gain(a lot of it is water weight)

•   increased risk for other morbidities(such as cancer, kidney disease, etc.)

•   increased risk for various types of arthritis

•   increased chance for joint problems like shoulder injuries and back problems neck

•   premature death if untreated or if another morbidity is present

•   mental instability and/or conditions in some patients

•   bowel movement problems

•   colon polyps

Many patients experience a wide range of symptoms and side effects that are not on this list. They are not on this list because there are so many of them that it would take pages to document. Another reason that they are not on this list is because a great deal of doctors will tell their patients that these symptoms are not from acromegaly or that they are being hypochondriacs. Most of the patients on patient-centered websites will testify to having sleep disorders, digestive problems, low energy, chronic medical fatigue, poor balance, low quality of life, and many more side effects that drastically affect their everyday lives. Many acromegaly patients never receive the help that they need in its entirety and many of them believe that is due to doctors and scientists not really knowing the full extent of how this disease can affect each individual differently as well as not having a collective database with massive interviews with acromegaly patients. This is a huge doctor/patient relationship problem because if multiple acromegaly patients have similar complaints about how the disease effects them, but the doctors don't recognize that, and those are problems that are due to a lack of research.... then there is a huge deficit for information about this rare disease.

Another major problem that acromegaly patients face is insurance issues, especially on Medicaid in the United States. There are multiple reasons why this is such a humungous problem. The first reason is that Medicaid patients in some states in America do not have the luxury of doctor shopping to try to get the best possible care. In those states very few doctors even accept Medicaid anymore; and those that do are usually not the best doctors for an acromegaly patient. Therefore, if a patient is on Medicaid and is lucky enough to find an endocrinologist or neurosurgeon, they have to stick with that doctor no matter what, just because of the way the insurance is set up. There are a lot of different insurance companies where patients have that problem. Another problem is that Acromegaly is typically not listed as a special care disease (so to speak), like cancer or MS thus insurance companies are not as willing to work with patients on bills and treatment plans and much more. The biggest insurance problem that acromegaly patients deal with is by the time they find out they have the disease they are not able to find a suitable or affordable insurance plan if they did not previously have insurance. This is largely due to the fact that it would be considered by many insurance companies to be a pre-existing condition (if they are not currently insured). Also, the insurance companies do not realize all of the details of the disease and what they need to cover.

One last major issue is the lack of awareness in the community, in the government, and in the medical field. Acromegaly patients do not see the same support and backing that other rare diseases see like cancer, MS, and many more.

On behalf of acromegaly patients worldwide, and as an acromegaly advocate/patient, I would very much enjoy and appreciate a stronger push in the government and medical fields to increase research on this disease, and to fix or solve some of these problems that acromegaly patients face. Just as it was with every major rare and serious diseases discovered and supported before, it takes a joint effort between the government, medical, scientific, and general community to achieve the maximum support, research, advocacy, and success for this disease. I would like to thank all who have donated their time, money, help, support, and research already and those who continue to do so. I would also like to have you know that many patients have benefited greatly already from your support. Please keep up the good work and continue helping us make acromegaly an easier disease for patients to live with and maybe one day with the right changes and support find a permanent cure for acromegaly and for all patients.

 

 

Wayne Brown
AcromegalyCommunity.com

Last night I was at an open-air concert; and while waiting for the show to start, I was unexpectedly faced with mortality.  Everyone at the show was fine, but when I was reading social networking posts, I kept reading people’s messages of peaceful rest to a woman I didn’t know; but I could totally relate to her struggles with a rare disease.  Sarah, a young woman dealing with the effects of Cushings Syndrome, passed away from a head cold- a medical complication at the ripe old age of 28.  I didn’t need to know Sarah to know that this was just wrong!

Based on what I have read from many of Sarah’s friends, I got a brief snapshot of the situation.  Not only was she a very special woman that many people loved, her passing was made more tragic because maybe it was avoidable.  It seems that several people were concerned that the quality of her medical care was at least partly to blame for her early passing.  Now I did not know Sarah or her issues to agree or disagree, but it brings up a really important topic of discussion for the rest of us: what is a good relationship with your medical professional?  For those who are unfamiliar, Cushings Syndrome is a hormonal disease that impacts people who have a consistently high exposure to cortisol (a hormone released into the body as a response to stress).  I have had cause to learn a lot about Cushings because of the number of Acromegaly patients who have to juggle the effects of both diseases.

While I know this discussion can be uncomfortable, I would like for you to ask yourself honestly: DO YOU TRUST YOUR MEDICAL PROFESSIONAL?  Please understand the question I am asking is different than whether you like your doctor.  While it is nice if you like your doctor, it is not as critically important that you like your doctor, as it is that you trust him or her.  I promise you that I am not golfing buddies with any of my medical professionals; but… I am confident that they are providing me with the best possible medical care I could ask for, without my traveling to a dozen other cities.  Ultimately, this is an essential question you need to answer for yourself because your answer can directly impact the quality of your health care, and therefore the length and quality of your overall life.

Now does trusting your doctor mean they know everything there is to know about all things medical?  NO!  Just because you trust your doctor or nurse does not guarantee that they know everything about every disease you may ever have.  Willingness to learn accentuates, not lessens a doctor’s credentials as a diagnostician.  Many of us have had cause to teach our doctors something about our disease not covered in the textbooks yet.  When I was growing up, I knew a doctor’s wife who used to love to joke that ‘that’s why it’s called practicing medicine.  They have to keep trying till they get it right.’  It is impossible for any one medical professional to know everything about everything.  The question you need to answer for yourself is whether you trust them to listen to what you say and help you to make your life more pleasant, because of or in spite of your medical situation.

Sadly, for some of us, our medical issues are not a joke but a depressing reality- that we have to go years before we find the right medical professional who can both treat us medically AND handle our personalities in a way that will help us to trust our doctor/nurse/physician assistant.

Now, if it is true that the doc is merely practicing, why is our trusting them so essential to the relationship?  That is simple.  Honesty.  If you are anything like me, you would rather go to a medical office than a psychic for your medical care.  If you are withholding from your doctor, for any reason, you are detracting from your own medical care - and making it nearly impossible for your doctor to properly treat you!  I am not saying you should call your doctor’s office because you stubbed your toe getting into bed last night and your nail is bruised in the morning, but if you stubbed your toe last night and you were in so much pain that you woke up and took seventeen aspirin, this is an issue worthy of a chat.  Your medical professionals need to understand who you are, how you feel, what your pain threshold is, and how you manage your medical issues when he or she is not around (yes, this means your OTC treatments AND if some of your self-treatments do not necessarily come from recognized pharmacies- while this may be an awkward conversation and you may get scolded, such decisions by you can effect your treatment too!).  Medical professionals and their patients must know they can trust each other.

Ultimately, we are the patients- its kind of like being the customer at a store.  If you want to do hours of research before you buy the best can opener, or if you want to consistently look over your doctor’s shoulder, that is your right; but ultimately you need to have faith in the purchase you make at the store, just as you need to have faith in your doctor’s course of treatment.  If you do not feel comfortable enough doing that, then you have a decision to make: is your lack of trust in the doctor their fault, or is it yours (as the patient)?  Again, not an easy question to honestly answer, but essential in our long-term well-being!  If you have been withholding too much from the doctor, waiting for the doc to miraculously figure out what’s wrong seems both unlikely and unfair- and largely a mess of your own doing.  Going to another doctor is simply going to slow your treatment, and likely perpetuate the problem.  It is not the doctor’s fault that you are not honest with them about your issues.  Open up with your doctor and have a frank discussion- see where things go from there.  But if you are honest with your doctor, and you still feel like the doctor is either uninterested, unable or unwilling to figure out your issues, or is flat out too busy to give you the focus you require and deserve, well then you need to look at possibly seeking a new medical professional.

Just remember, starting with a new doc can be difficult.  If he or she is popular, you might wait at least a month or two just to get that first appointment where no treatment might legitimately get started. During this time that you wait, your issues are not being treated at all.  On top of that, you and your new doc both need to figure each other out, and again you need to try to build that trust and understanding with a new doctor and staff, working toward a momentum of medical stability.  All that being said, if you are not happy, and are ready for the switch, then go for it!  Remember, you are most responsible for your own medical care, since you are the person most greatly invested in your own well-being!  Don’t stay with a doctor simply because you are afraid to leave.  If you are ready to move on to a new doctor’s office, just make sure you are doing it for the best reasons.  Hopefully your new doctor’s office will offer you the ability to trust and be totally forthright.

I am just saying that if you are dealing with some sort of extraordinary medical condition, please invest your time to be totally honest with your physician(s).  Talk with him or her in a frank and honest way.  If your disease has major issues that are kind of sensitive to talk about, and you are afraid to talk face-to-face with your doctor but feel you can be more frank with the nurse or physician assistant, then do that!  If the issue is particularly awkward for you, then at the very least, keep a journal and share that with your doctor’s office.  At least the information is being conveyed.  While there are preferred methods of sharing, getting the information is more essential than the method of delivery.

I don’t know what the facts are that surround Sarah’s case, but it is a tragedy any time a 20-something person passes away.  Don’t let her passing be for nothing.  We can learn from her.  Take care of yourself medically, and work to foster a relationship of openness and trust with your medical professionals.  Without trusting our medical professionals, how can we expect them to treat us in a way to actually improve our health?  And at the end of the day, what is more important than our health?  Dare I say it… nothing.

Wayne Brown
AcromegalyCommunity.com

It’s been only a few weeks since Acromegaly Community’s first annual It’s About The Community! conference came to a close, and when I sit back looking at photos and embracing memories made during this trailblazing weekend, I cant help but get a huge smile on my face.  I truly hope that all of our great members and guests are still feeling as great as I am.

From the moment the first person walked into the Friday night cocktail party, we all knew that something very special was taking place.  One could not help but be overwhelmed by the positive vibes washing over everybody as soon as they walked into the room.  While I am not sure there are any official numbers, I am confident in saying that this was the largest collection of Acromegalic patients, ever collected for an Acromegaly-centered event!  Throughout the weekend, almost everyone, no matter what their stage of medical treatment, was smiling and laughing.  The reason for this happiness was simple: patients realized they were not alone, and their loved ones had a whole new appreciation for what their loved ones deal with- on a daily basis.  Our initial goal with this convention was to help people shrink the circle surrounding them, making then feel less lonesome and more supported- I think we overwhelmingly accomplished our goal!

Here is the problem… After the conference ends, real life is waiting for us- sometimes with a really painful smack!  The thing about motivation and positive thinking is that it doesn’t last forever.  In the words of motivational speaker Zig Ziglar, “People often say that motivation doesn't last. Well, neither does bathing - that's why we recommend it daily.”  As Acromegaly patients, we need to be aware of our emotional fragility at times, and figure out the systems that best help us battle the lonely and sad days.  This disease can get the best of us, if we let it.  Our job is to make sure that we do our individual part to figure out what individual coping mechanisms work best when times are not going so well for us.  Me personally, I need to start each workday with a good workout.  Some days are better than others, but getting the adrenaline going helps to set the tempo of a great day--- and if I am stressed about something, taking my anger out at the gym is safe and healthy! This can only help to make my whole day better.  I also love a good laugh; so when the day has not been going so well, I have my favorite entertainment sources I know I can depend on to get a chuckle.  Most importantly though, I have great friends; some are fellow patients, and some have nothing to do with the disease at all.  Most of the time when we talk, the LAST THING we want to talk about is the disease.  It is more fun to talk about sports, politics, the weather, or what stuff is going on in their lives; anything to NOT think about my disease.  Now these are some of the shortcuts that work for me.  It does not mean they will work for you.  If you like to talk about your medical issues, that is good.  If you hate sweating, the gym is probably not a good place for you.  Just experiment to figure out what puts a smile most easily on your face!

If you were in Las Vegas for the Its About the Community! conference, we talked about all sorts of great ways to improve your life and work around the disease in a lot of different ways; both medically and personally.  We also, and almost more importantly, made a lot of new friends and established new contacts.  Reach out to your friends.  Make new friends great friends.  Call them and enjoy reliving good times, and talk about a great potential future!  Figure out what works best for you when you are low, and do what you need to do to pick yourself up when you are low.  When you have a smile on your face, everything feels better!  If you need more ideas, reach out to your friends in the community.  Brainstorming a smile is time well spent.  If you did not make it to Las Vegas, do your best to be at next year’s convention.  Your being there will help everyone have a better time--- including you!

Remember, positive vibes don’t last forever.  The trick is to not get scared by your sadness.  Figure out what is the impetus to the unpleasant mood is and fix it as quickly as you can.  If you cant fix the root of the problem, try to add happier things to your reality that can help you smile more easily… you will be amazed how this will improve your current struggles.  You bathe daily, try smiling daily too… you will feel better, I promise!

Wayne Brown
AcromegalyCommunity.com

      There is a strange phenomenon going on in the world today… this idea that people can and should say any thought that falls into their heads.  Personally, I just don’t understand it.  I know that I regularly talk about how we appreciate our loved ones being understanding when we are having a bad day; but we have obligations to the people we care about as well.  As Acromegaly patients, we know when our body is off, and unless your friends and family are psychic, simply being in our presence does not offer any clues as to our emotional issues of the day.  While our bad days can be really ugly, this does not give us license to mow through everybody in our lives, with a simple apology the next day.  Remember, “sorry” is not ketchup, offering to cloak the bitter flavor or your mistakes.

      Years ago, when my sister’s children were just learning to communicate, she would frequently say to them “use your words” when they had a lot on their minds, but were not sharing their thoughts effectively.  This had spillover into our relationship, and occasionally I would be told the very same thing if I started to say something, but stopped because I knew it was overly negative or hurtful.  While my quick wit would have offered me a moment’s catharsis, it would not have helped our relationship.

      As patients, when we are communicating in person or over the phone, and we know we are having a bad day, we really need to be aware of what we say BEFORE it falls out of our mouths and into unsuspecting ears.  It’s the old construction rule: measure twice, cut once.  If you are thinking something driven by emotion, think before you speak.  If there is any doubt of how your thought will be interpreted, either rephrase or just don’t say it!  You are under no obligation to share the black cloud of your day with the people you care about simply because they should understand.  There were several times when my sister would say, “use your words…” when I had several choice ones in mind and instead I would shut my mouth; mumbling that I am not speaking BECAUSE of my words.  Sometimes chewing on your tongue does more to help relationships than anything else!  All this being said, if you are in a relationship where the other person is constantly running you down, this does not mean you have an obligation to be their doormat.  What I am saying is that NO ONE has the right to belittle another person just because they are feeling badly about themselves.  Now, verbal communication is not the only communication that takes a hammering when we are not happy…

      The beauty of the Internet is that you can say whatever you want, in relative anonymity… The worst part of the Internet is that you can say whatever you want, in relative anonymity.  Unfortunately, the person who is reading what you are writing also has thoughts and feelings, and they do not have the ability to read your message with the same thought and tone with which you wrote it.  If you wrote something jokingly, or implying some sort of sarcasm, the message probably did not connect as you had intended.  Until Microsoft creates a sarcasm font, keep in mind that only about 3% of communication is actually the words we use; the rest is tone, body language, facial expressions, and pace.  This is something that WE ALL need to keep in mind when communicating in written form. If you have ever had an argument based on something written in a text message, Instant Message, email, or other written communication, you know what I am talking about!   When I have an important email to write where I am not happy, I will write it in my word processor, walk away, and read it again when my emotions have settled.  THEN I edit as necessary.  Heat of the moment has caused more problems for more good relationships than most other issues.  And the Internet never forgets!

      Do you have relationships that are already stressed?  Intentionally causing pain to the person you are struggling with is not going to lessen that pain.  If the relationship is so bad that you don’t care, then you have to make some serious decisions that might make your life better in the long-run.  But if this is someone you care for and would like to continue to have in your life, think about the message you are going to convey BEFORE you have to apologize for it.  At the end of the day, it will make both of your lives far happier.

Wayne Brown is the founder of Acromegaly Community; a group focused on patient advocacy, and was the lead writer for the collaborative book Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World.  He can be reached at  This e-mail address is being protected from spambots. You need JavaScript enabled to view it  

 

“You're playing and you think everything is going fine. Then

 

one thing goes wrong. And then another. And another. You

try to fight back, but the harder you fight, the deeper you sink.

Until you can't move... you can't breathe... because you're

in over your head. Like quicksand.”

 

---Shane Falco (Keanu Reeves) on “The Replacements

 

No matter how optimistic you think you are, no matter how much you look at the glass as half-full, and no matter how rosy your glasses are, bad days are bound to happen.  In fact, I would venture to say that if nothing ever goes wrong in your life, you are not living a very full life at all.  Living a full life involves taking chances, and calculated risks, but when you do take those chances, there is always a probability of error.  The difference between long-term success and long-term failure is how you respond to the setbacks you face.

Here is a quick suggested guideline on how you might most quickly weather the metaphorical storms of your life, and even end up on higher ground after everything settles:

1) Do you have an umbrella? This morning as you were getting ready for work, the weatherman called for monsoon conditions, but you were not listening; all proud of your brand new suit you were going to wear to impress the boss.  When you stepped outside, it was a beautiful morning, so why not walk… The exercise is good for you, and its just a mile or two to the office!  Halfway along your walk, the skies open up!  You are being drenched!  Oh man, you didn’t need this today!!! Priority #1 is key:  how quickly can you stop getting wet?  We can’t stop the rain, but we can choose how we respond to it.  If you have an umbrella, this is a quick, easy, temporary solution.  If you don’t have an umbrella though, you still have a real problem that needs immediate attention, and improvisation is essential!  Get into the nearest building, car, taxi, or other permanent structure, so you would have at least a temporary solution to your problem, right?  When faced with a problem, the best first step is to figure out how to at least temporarily fix the problem.  While the shortest term solution may not fix the entire problem, it will offer you the ability to focus on a stable and strong long-term solution.

2) What caused my storm? This is not always comfortable to identify.  Evaluating our own missteps can be uncomfortable and frustrating.  If you checked the weather on the internet, radio, or tv, you may have driven to work, brought an umbrella, or taken some other evasive maneuver.  So many times we let ourselves get caught in life storms that were at least minimally predictable.  Keep an eye down the road of life.  While dealing with the “boring stuff” today may not be ideal, think of the long-term benefits.  Fixing a worn part of the roof during the sunshine may be more expensive than we would have liked, and not a whole lot of fun… (besides, its not really a hole.  I will fix it when it becomes more serious). We all have these worn spots in the houses of our lives.  They may be interpersonal relationships, finances, medical concerns, or whatever is loitering in your mind while you read this.  Here is the thing… it is easier, quicker, and far less expensive to do quality repairs before the storm hits, exacerbating previously minor problems.  So once you figure out what caused your storm, we need to focus on fixing it.  Don’t beat yourself up, just figure out why it’s raining, how hard its raining, and how we can most easily and quickly get dry and cleaned up!  You might need to bring in experts to help you, but if it helps you fix the problem, it is money well-spent.  The point of figuring out where the problem stems from is not for purposes of assigning blame; but rather to figure out what the root problem that needs doctoring.  Once you clearly know and understand what the most obvious problem is, you can work to repair it.  After you get past the obvious problems, you may find other issues beneath the surface.  This is great!  Fix them now, if you can, before they have the opportunity to cause their own problems!

3) Shelter yourself until the storm passes. This does not mean you need to ignore the problem until it goes away.  It means you need to protect the most important people in your life.  It’s not your family’s fault that you got wet.  This is important to remember!  When in the throes of a bad day, it is easy to lash out at others.  Just because you are feeling overly sensitive, does not give you license to prop yourself up by stepping on the necks of the people you most love.  For whatever reason, we find it easiest to verbally abuse the people we really love the most.  If it is our storm cloud, we have a responsibility to screw on a smile when dealing with others.  Taking out your bad mood on people not responsible for your problems is only going to get them defensive around you, and exacerbate your already bad day.  And if a person you love is also partially responsible for your storm cloud, you still have an obligation to deal with the person in a way that is fair to both sides.  Saying or doing things that will intentionally incite the other person just so you can have the upper hand is manipulative, cruel, and just plain wrong.  If you have a close friend or sympathetic spouse that will let you vent, that is ideal; but don’t abuse them just because you are not happy at the moment.  Simply dealing with your frustrations by kicking the dog will probably result in Rover biting you.  Not only will you deserve the bite, but that will just bring more storm clouds as you now have to undo even more problems!  The bad day will pass, I promise.  If you can’t control your emotions or your tongue, remove yourself from the situation.  While that may still be rude, and may lead to other problems down the road, lashing out in anger causes even more long-term problems.  Remember, one second’s demeaning comment to your spouse, child, co-worker, or peer, can cause a lifetime of pain for that person, and awkwardness between you and them.  Moreover, words are very powerful, and frequently more powerful to the recipient than the speaker.  Not only is it impossible to un-hear negativity, it is not fair to throw someone you love into their own rainstorm just because you are having a bad day.

4) Build a permanent structure. After things have settled a little, and you feel like you can breathe again, now its time to work on preventing your storm from returning.  So many of our problems are caused by our own actions, or inactions.  The trick is to learn from our mistakes.  Learn your lesson, but don’t wallow in your misery one second longer than necessary!  Sometimes, when we are drenched in the storm of a problem, it is easy to torture ourselves.  “If I had only done…”  Okay, well playing the what-if game is a waste of time right now, and it is simply too late for resolving the problem yesterday.  So after your problem has been rectified, or at least slowed, immediately start working on a long-term solution- ESPECIALLY if you already know what that solution is!  Again, this may be a financial issue, relationships with loved ones or peers, or even your health.  Take the time to take care of your biggest issues first.  And if you find there are a number of aspects in your life in need of more permanent structures, sit down and figure out your priorities.  To me, health should always be the top of the list.  If you don’t have that, the rest of the list just doesn’t matter nearly as much (but that is just my opinion).  If you have a family, make this a family event.  Your storms are your family’s storms too.  And if you have issues that you are concerned about, make sure everyone feels comfortable moving forward.  The comfort of having a plan of attack on life offers its own long-term stability; when things get rocky, you can always go back to the plan.

 

5) What caused the storm? The storm has passed.  You are breathing easier now.  The best thing to do now is to sit back and take a real inventory.  Take the time to really figure out what caused all the problems.  Not every storm is an emergency of epic proportions, but they all have their own factors that need to be honestly examined.  This can be the hardest part.  What did you do to contribute to the storm, for good or for bad; and how could you have avoided the storm in the first place.  Sometimes, the storm was inevitable.  That happens.  Still, there is always some lesson to be learned.  Take the lesson.  Internalize the lesson.  Gain the knowledge.  Then, most importantly, dismiss the pain.  Pain, anger, and negative energy is utterly toxic, and if you allow yourself to marinate in negativity, it can envelop your entire being.  Negativity draws storm clouds.  Happiness is a choice, and sometimes it is a difficult choice to figure out, but in the long run, your life will be stronger for it.

 

It may sound strange to hear, but if you learn how to manage your setbacks, instead of letting the setbacks steer your own life, you will find that the major life challenges you keep facing become far easier to manage.  Of course problems will still show up.  Even people with the most mundane lives have challenges (sometimes more).  And yes, taking chances sometimes has negative results to it, but when risks pay off, they can be huge!  Seize your life, you only get one shot at it.  Even when things go badly, managed properly, your life will be richer than it was before.  Knowledge does not come to us easily, but it enriches and fulfills our lives.

Don’t be afraid of bad days.  They are great learning opportunities, if you make sure you are learning from the experience.

Wayne Brown is the founder of Acromegaly Community; a group focused on patient advocacy, and was the lead writer for the collaborative book Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World.  He can be reached at  This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Good luck, and I hope this makes your day better!

Wayne Brown
AcromegalyCommunity.com

Alone in my universe… What a desolate thought to describe one’s life.  The idea that someone can be surrounded by people who love and care about them, yet still lack the ability to feel almost any sensation of understanding or support is incomprehensible to most individuals. But for many people struggling with a rare disease, it is just their reality.

When I was first diagnosed with Acromegaly in 2005, I though this was going to make my life so much easier; after all, it seemed like ages that I was complaining ‘I just didn’t feel good.’ Strangely though, being told that I had a tumor in my head ended up being a pretty bad day! Since diagnosis, surgery, and treatment, a lot of time has passed, and I have learned many different coping mechanisms and work-arounds for bad days with the disease. Some of what I have learned was self-taught, but I have also learned a lot from the wonderful people I have met along my medical travels. In 2006 I started to develop several message boards on various social networking websites including facebook and myspace, and over the years we have built a fiercely loyal group of supporters. When I need medical support and encouragement, these are the people I generally turn to first because they understand my reality the best.

When I first started to write Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World, about two years ago, my goal was primarily focused on trying to exorcise my own loneliness demons. But as I started to develop the project more seriously, I discovered that my own story alone could not sufficiently fill the information void that most people live with.  Acromegaly has so many nuances and individual issues that one person’s story alone would scarcely scratch the surface in a quality book.  This is when I turned to my friends for support. I went to the different message boards and shared my idea, looking to see what the response would be.  Would people be willing to open their most personal struggles to the pages of a book? I could not have been happier with how eager people were to participate in my little project! People were only too happy to share their own individual stories. Stories focus on everything from loneliness, isolation, and confusion; to the unspoken truths of surgery, to several humorous anecdotes. The focus while writing the book was to build a metaphorical flashlight others could use to cut through the pitch-blackness of isolation and fear.

What we finally compiled was a very special and unique collection of personal stories that are honest and inspirational. This is a book filled with laughs and tears.  Empathy for other patients, and explanation for people who are not actually personally afflicted by the disease but know someone who is. I am proud to say that all the feedback we have gotten so far has been absolutely radiant. People are reading the book and just devouring the information and support.

This book, while focusing on one specific rare condition has been written with the goal of providing help, support, and information to anyone dealing with their own medical fears and frustrations.  After you read this book, I encourage you to spread the word. It is through our shared experiences that we will truly be able to do battle against that feeling of being totally alone in our own universe.

Click on the book cover's logo to be able to order our book and learn a lot about Acromegaly from the people on the front lines of the disease. 

Wayne Brown
AcromegalyCommunity.com

Well it finally happened.  We are finally making major strides forward into Acromegaly Community’s future.  This new website is designed to be easier to navigate with a much better message board. 

You can now favorite articles on facebook, and expand your own profiles.  Feel free to make this new website YOUR community, and share it with your friends, family, and medical professionals.

I hope that you like what you see.  If there is something that you feel we could be doing better or different, please let me know immediately so we can make sure we are addressing it.

If you have a blog or news piece you would like to share, please send it to us and we will be happy to share it with the entire Acromegaly Community! 

 

I hope you are well.

Mon, May 10th 2010 08:20 pm

http://www.endocrinetoday.com/view.aspx?rid=64041  [ View Original Article ]

Consensus on criteria for cure of acromegaly published
A consensus group has reviewed the criteria for cure of acromegaly, and updated guidelines detailing the latest management criteria were published in the Journal of Clinical Endocrinology & Metabolism.

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The criteria were re-evaluated and updated last year by the Acromegaly Consensus Group, an international collaboration of endocrinologists and neurosurgeons.

In the 10 years since the Acromegaly Consensus Group defined the criteria for cure of acromegaly, significant progress has been made in the management of acromegaly, according to the experts.

“The previous guidelines created a decade ago were rigid, offered fewer clinical options and resulted in practically all patients submitted to the same type of follow-up independently of the treatment,” Andrea Giustina, MD, professor of internal medicine, University of Brescia, Italy, told Endocrine Today. “This updated consensus is more flexible, with different approaches in terms of biochemical evaluation for various treatment modalities such as surgery or different medical therapies.”

Review of criteria

The consensus group reviewed criteria for relevant assays, biochemical measures, clinical outcomes, definition of disease control, available published evidence and strength of consensus statements. The group made several significant changes to the 2000 guidelines.

“If managed appropriately by a multimodality team with specific experience of managing pituitary tumors, there is little justification for patients to have reduced life expectancy, frequent morbidity or uncontrolled disease,” the experts wrote in the report.

New drug therapies are the cornerstone of the criteria for disease control, particularly long-acting somatostatin analogues and a growth hormone receptor antagonist. Since the previous consensus, GH receptor antagonists such as pegvisomant (Somavert, Pfizer) have become integral components of acromegaly treatment.

“These medications have proven relatively safe and highly effective in achieving tighter control of GH and insulin-like growth factor I hypersecretion,” Shlomo Melmed, MD, Endocrine Today Editorial Board member and senior vice president of academic affairs and dean at Cedars-Sinai Medical Center, Los Angeles, said in an interview.

The first clinical trial of pegvisomant was published in 2000, making it substantially an experimental drug at the time the last criteria were established, according to Giustina.

“Now, after 10 years, we have a solid familiarity with the treatment,” he said. “Furthermore, we recognize that the GH assay is not useful in assessing the response to pegvisomant treatment.”

Long-acting somatostatin analogues have proved to be safe, potential alternatives to surgery.

“Emerging evidence now supports the notion of using somatostatin analogues as primary therapy to shrink tumor size in the appropriately selected patient,” Melmed said. “Medical, rather than surgical, therapy can be offered to those patients who exhibit no compressive tumor mass effects, those in whom surgery will invariably still require postoperative medical treatment, those who are too frail for anesthesia and those who decline surgery.”

The issues of unreliable GH and IGF-I assays, assay standardization and rigorous normative data have presented challenges in interpreting biochemical measures and have led to major discrepancies in values.

The updated criteria include the use of international units, the adoption of the highly purified recombinant IGF-I World Health Organization first international standard and the further development of mass spectroscopy-based technology.

Changes were also made to the levels defining disease control. Optimal control is now defined as age-adjusted normal IGF-I level, determined by a reliable standardized assay, and a GH level less than 1 mcg/L measured as a random GH using an ultrasensitive assay. In patients undergoing surgical management of GH-secreting tumors, the oral glucose tolerance test is recommended to assess the outcome.

The updated criteria also include further recommendations for assays, GH and IGF-I regulation, discrepant biochemical results, clinical outcomes and definition of disease control.

Future effect

The experts expect the guidelines to have a major effect on the treatment of acromegaly.

“It allows us to speak a common language. Clinicians all over the world will be able to approach acromegaly in a unified manner, and we believe that this is important for the standard of care and cure of the disease,” Giustina said.

More rigorous control of hormone hypersecretion will lead to improved management of comorbidities such as diabetes, hypertension, cardiovascular disease, arthritis and sleep disorders, Melmed said.

“Ultimately, these advances should improve the adverse mortality rates associated with uncontrolled acromegaly,” he said. – by Matthew Brannon