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Weathering The Storm of a Bad Day

on Tuesday, April 12, 2011. Posted in Blog

 

Wayne Brown
AcromegalyCommunity.com

 

“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!

Alone In My Universe...

on Thursday, April 07, 2011. Posted in Blog

Real People Come Together to Realistically Discuss Their Rare Disease

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. 

Acromegaly Community is Reborn!

on Saturday, April 02, 2011. Posted in Blog

Welcome to our NEW Community!

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.

Recent News Clippings

on Monday, March 14, 2011.

Get Your Local Media's Attention


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If you are looking to spread the word about your medical condition, do a fundraiser, or brag about some accomplishment you have finished, this is where you want to go.

If you want help, send us an email with your name, contact information, what you are doing/have done, and why your local media should want to cover this event.  We will happily work on your behalf to get the cameras or reporters to cover your event.

Consensus on criteria for cure of acromegaly published

Written by Janice Samuels on Sunday, March 13, 2011.

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

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