Your Rare Destination

You, my friend, are on a journey...

Your destination is rare and not well known.

Your destination is so rare...you need a guide to get you there.

You look around, see a guide and hire them.

But most guides don’t know about the destination, don’t believe in it or they’ve heard about it but try to dissuade you from going there.

One says they know the destination and the way to get there so you hire them and follow them only to find out it wasn’t the right path.

Now you are farther away than when you started.

You have bruises and cuts from being led down that wrong path. Often left to deal with the resulting trauma.

You are frustrated, hurt, angry, irritated, and ready to give up...but you know you need to get to that rare destination.

You discover some locals who have been down the path to a similar rare destination...finally, you find someone who can help point you in the right direction.

You start learning about that rare destination - what it means to you...

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Why It’s Important to Disagree With Your Doctor

Raise your hand if you have ever disagreed with a doctor?  

Maybe I should ask how many doctors have you not disagreed with?  

How many doctors are happy when you disagree with them?

It can be hard, especially for those us who don’t like conflict, to speak up and disagree with our doctors but let’s talk about why it is so important.

You are the Controlling Partner

Ideally, our relationship with our doctor is a partnership where we work together toward the same goal but even partners disagree.  Disagreements may occur on the goal, testing, diagnosis, or which treatment to be used.  

The best partnerships build off the strengths of each of the partners.  In this case, you are the expert on your body - what you experience, how it reacts, and your goals.  Your doctor is an expert on medicine (in general) - their understanding of the disease, diagnosis, and treatment. 

So, as the controlling partner in this partnership, it is...

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Medical Trauma - Is it Real?

Do you deal with the effects of medical trauma? 

Have you been told you need to get over it and suck it up?

Is medical trauma real?

It started out gradually, one day I noticed my arm was aching and it hurt to write or to be on the computer.  Pretty soon, I had a stabbing, unrelenting pain that spread to my neck and shoulder blade - it left me in tears and unable to sleep well.  Before long my forearm was screaming in pain and my hand was numb and tingling. 

I approached it in the ‘tried and true’ method of just ignore it and it will go away.  No luck.  I tried resting it but that didn't help either. Soon the pain was so bad I couldn’t use my arm and even walking was uncomfortable.

“Please don’t let this be another cervical disc and stenosis problem or Parsonage-Turner Syndrome, a rare neurologic disease,” I muttered to myself. My cervical fusion in Aug 2019 had gone well but it was a tough recovery and I really...

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Can the Wrong Doctor Be Dangerous?

As in so many areas of life, it is hard or often impossible to know 'what you don't know' or to recognize what hidden issues or dangers are out there.

When you are dealing with doctors and medical issues, what you don't know and the hidden dangers of staying with the wrong doctor can be disastrous and even life-threatening.

The effects of staying with 'a wrong doctor' can vary from mild frustration to long term effects on the quality of your healthcare.

Changing doctors isn't easy or for the faint of heart

I get it.  Finding, meeting and working with a new doctor is a lot of work and can be scary too.

Let's take a closer look at some of the hidden dangers of staying with the wrong doctor.

Danger #1:  Emotional or psychological effects


When a doctor is dismissive or assumes the issues are from anxiety or depression, it can have a huge impact on you and your loved one's emotional and mental health.

How many of us have been told that it is anxiety?  Or if you make them...

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Home Monitoring or ER? Updated Anaphylaxis Recommendations

 

 

Have you heard about the new anaphylaxis management algorithm?

If you or someone you love has had anaphylaxis that required an epi-pen, it is likely that you were told to call 911 and immediately go to the ER for observation.

Last week, FARE updated their recommendations to include COVID-19 into the risk/benefit balance of monitoring at home vs. an ER visit. This is especially important in areas where ERs are swamped with COVID-19 patients although most ERs have new procedures to screen for COVID-19 when getting checked in along with a focus on minimized time spent with any patient to lessen risk of transmission. 

As you can imagine, these new recommendations have caused a bit of controversy and concern in the food allergy and mast cell disease world.

Let’s take a closer look at the new recommendations and why they are being made.

Dr. Thomas B. Casale, the chief medical advisor for operations with FARE (Food Allery Research & Education)  and...

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Top 10 Reasons Rare Disease Patients are Pandemic Pros

 Rare Disease Patients are...
  1. Pros at limiting infection and cross-contamination, sporting facemasks, washing hands, and effective cleaning
  2. Experienced at social isolation including homeschooling, and other creative options, work from home solutions and, finding support online
  3. Used to handling emergencies, monitoring symptoms at home, and employ multiple rehydration techniques
  4. Familiar with doing research by reading research articles, crowdsourcing ideas, and resources 
  5. Practiced at treasure hunting food, supplies, meds and necessities (TP anyone?)  
  6. Stocked with medical equipment and supplies to rival a medical supply company  (BP cuff, pulse ox, electrolytes, etc) 
  7. Blessed with Mad MacGyver skills to adapt and figure things out.  
  8. Experts at knowing our own bodies, symptoms, medical history, meds, and what we need
  9. Ph.D.s in dealing with red-tape and bureaucracy
  10. Resilient, used to living with...
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Uncharted Territory - Doctor's Appointments in the time of COVID-19

 

Getting rare disease care has never been easy but with the coronavirus outbreak, it has become even harder.  Clinics are closing, surgeries are being rescheduled and long-awaited appointments are being postponed.  


Many of you may have had things canceled or postponed.  As disappointing as this is, it is important to realize that this is being done to help our medical system handle the coronavirus outbreak from a logistic point while also trying to optimize your safety as well. 


Your doctor, their clinic and/or hospital will be following recommendations by the CDC (Center for Disease Control) and ACS (American College of Surgeons) along with careful consideration of your specific medical case to decide what can and should be rescheduled. 

 
Our doctors were struggling to survive in a broken medical system before but now they are entering the totally unchartered territory of providing medical care during a pandemic.  The medical system...

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What You Should Know About the Chief Complaint

If you have been seen at a teaching hospital you have likely been seen by a medical student or resident prior to seeing the (attending) doctor.  They meet with you first and their job is to take your history and present it to the doctor.   Sometimes it goes well but too often it ends up a bit like a game of telephone where your original message is distorted and garbled when it gets to the doctor. 

Let's look at one aspect of what is going on here and why things sometimes go awry.


Chief Complaint


Have you ever thought about the process or framework a doctor uses to get information from you in an interview?  Did you know that they are all taught this framework, the medical interview, in medical school and they continue to use it throughout their career?

One of the most important components of the medical interview is the chief complaint.  The chief complaint is used by the doctor to structure the appointment and informs what questions he asks...
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6 Ways a Medical Appointment Is Like a Job Interview

You’ve probably heard the advice that you should write down questions for your doctor before an appointment but that is usually not enough when you are dealing with a rare or complex disease.  Did you know that doctors are taught a ‘medical interview’ that they use as the framework of your appointment?  By approaching your appointment like you would a job interview, you can learn how to better communicate and collaborate with your doctor, resulting in a stronger relationship and better care for you. 

Let’s look at the way an appointment or ‘medical interview’ is similar to a job interview.

  1. You need to be prepared and ready to answer the questions that are being asked.
    You have probably been asked the typical interview questions like  ‘What are your strengths?’ or ‘Where do you see yourself in 5 years?’  The first time you heard them, you may have stumbled and stammered a semi-intelligible...
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Our Broken Medical System

Our medical system has changed a lot over the last 20 years, especially for the doctors working in the system.

Intuitively and through our own experiences, we can see that doctors are struggling with the changes including high levels of burnout, frustration and even an increased rate of suicide. 

So, what is it that is causing the doctors’ struggles? 

Based on a 2018 survey, doctors reported their top two least satisfying factors about medical practice as listed below.

EHR design/interoperability                  39.2% 

Regulatory/insurance requirements    37.6% 

Loss of clinical autonomy                       37.0% 

Professional liability/malpractice          30.2% 

Amount of time with patients                12.4% 

Income/compensation ...

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