If you're living with a chronic illness, you're in the right place.

Tuesday, July 30, 2013

Healthcare in the News

8:52 PM Posted by Stephanie Horgan , , ,
Recently I read an article in Wired about the ideal hospital of the future. It is based off of a project called "Patient Room 2020" where a non-profit design firm called NXT made a proposed vision of the ultimate hospital room in the year 2020. As a patient, I must say, I'm impressed. If I have to go inpatient in the future, sign me up for this place. 

First of all, I'd love the view this room has, as well as how open and airy it looks. There is nothing worst  than feeling trapped and cooped up in a small hospital room with a bad view. Also, this room is so full of technology that it looks like the Apple store. Three things were noted in the article: 

When caregivers enter a room LED lights make the sink glow red reminding them to wash their hands, when properly disinfected the sink turn green.

A patient's dinner tray can be flipped over, so that the patient can turn on the lights, call their nurse, review their progress, and play games/use it like an iPad. 

Last but not least, once a patient is ready to go home, medical peripherals like blood pressure cuffs would be detached from the room and sent home with patients. Software tools embedded in the room would be translated into a friendly quantified self app that will allow patients to check in with a care manager remotely. 

What about those out there with chronic illness? Do you have any ideas to add? None of us want to be hospitalized, but I'm sure we all have things we have seen in the hospital that could be improved.

In other healthcare news, I saw that US News and World Report came out with their updated list of top hospitals and docs. I noticed some of my doctors on there, and some were not. My reaction was shock, as I truly trust and value my doctors', and was frustrated they didn't "make the cut." Does anyone else out there feel the same way? How important is it when picking a doctor is it that they are affiliated with a "top hospital"? How does one pick a doctor anyways? That is a topic for another day, but I'm open to your strategies! 

Thursday, July 18, 2013

We Are Type 1: A new organization to support

1:48 PM Posted by Stephanie Horgan , , ,

For all of us with chronic illnesses, we can appreciate non-profits who are dedicated to helping those who are sick and struggling, and a new wonderful organization just popped up, called "We Are Type 1". I saw it mentioned on a good friend's social media page, and was surprised to hear from her that there are no organizations purely dedicated to Type 1 diabetes and most of the research/funding goes into Type 2 Diabetes. With about 26 million Americans with diabetes, there needs to be more support for this growing chronic illness! I was surprised to find out that only 5% of people with diabetes have Type 1, which used to be called Juvenile Diabetes. It is often diagnosed in children and adolescents, but people can live with it forever. 

This new organization hopes to build its membership and connect those with Type 1 Diabetes, and also educate and advocate for them. To meet people on the site, you need to make a profile and then you will be able to pick your age range. Categories include "12 and under", "teens", "20s", all the way up to 100+. Currently, these are listed at the organization's national legislative priorities​ if you want to support them and contact your legislators:

  • Medicare and Medicaid Type 1 Diabetic Product Coverage
  • Private Insurance Access and Coverage of Type 1 Diabetes Supplies
  • Healthcare Reform and Implementation
  • Healthcare Exchanges and Essential Health Benefits
  • Food and Drug Administration’s Biologics Regulations 
  • Comparative Effectiveness Reform​
  • Independent Payment Advisory Board Implementation 
If you need more general information about diabetes, check out the "Recently Diagnosed" page on the American Diabetes Association website. Education is key, and support is crucial. And remember, you can always lean on one of the Jonas brothers for support. (Click for a surprise!) Don't forget to reach out and utilize mental health providers like us if you need some extra tools!

Wednesday, July 17, 2013

Acceptance: Part 1

I was trolling recent research publications and came across a 2012 study where the authors had designed a new questionnaire to measure acceptance in people living with Irritable Bowel Syndrome.  The idea of acceptance is pretty straightforward in that we no longer try to control, avoid, or fight our situation but rather engage in a "willing contact" with everything that comes with it.  In the case of a chronic illness, we do all that we can to get the right treatments and improve its symptoms as much as we can but also accept that there will be times we don't feel well - and that's OK.

There's an entire field of psychology called Acceptance and Commitment Therapy, or ACT, pioneered by psychologist Steven Hayes in the 1980s, that is gaining in popularity.  ACT comes from the cognitive behavioral therapy (CBT) theory, but is different in several ways.  I've used some ACT principles with some of my clients, especially those who are really struggling with accepting that they have a chronic condition.

One of the principles of ACT is we get stuck in unhealthy behaviors when we are driven by FEAR:

Fusion with your thoughts
Evaluation of your experience
Avoidance of your experience
Reason-giving for your behavior

What the heck does that mean?  What the handy acronym is getting at is that we become more distressed when our often abstract, negative thoughts are made very real, in that if I think this it must be real or true.  And because these thoughts must be real or true, we spend a lot of time evaluating them, expanding upon them, or simply repeating them over and over in similar formats.  We may try to avoid or block out these thoughts as much as possible, and to do this we may change our behaviors as to avoid making things worse or potentially putting ourselves in a tight spot.  Finally, we come up with reasons why we have to do these things because there really is no other logical way to deal with the situation.

We're in a tight spot!
Let's take the experience of pain, since that comes with many different chronic illnesses.  Logically, we try to avoid pain at all costs because, well, pain sucks.  If we've been living with pain for a while, our thoughts, emotions and behaviors may become very wrapped up in our pain experiences.  Subsequently, we may try to do everything in our power to avoid experiencing the pain, as well as the thoughts and emotions that go along with it.  This usually translates into behaviors, as we try to figure out what causes the pain so we can make sure we don't put ourselves in situations that cause pain.  Makes perfect sense, doesn't it?

According to ACT, the problem isn't necessarily with the mere presence or content of our thoughts about pain but how we respond to these thoughts and how these responses interfere with our personal values and goals.  A lot of people living with chronic pain conditions say that they feel like their life has been placed on hold for a long time, and that they haven't been able to do X, Y or Z because of the mental and physical energy being devoted to their pain and its management.

So what can we do?  In my next post, I'll review some of the strategies for greater acceptance and coping with chronic illness.  Stay tuned.

Dr. T

Monday, July 8, 2013

Guest Post: Navigating the World of Disability

10:16 AM Posted by Tiffany Taft , , , , ,
Today's post is a guest article written by Molly Clarke of the Social Security Help blog on how to go about obtaining social security disability benefits.  I hope that none of our readers ever have to go down this road because of their condition, but it's good to know some of the basics.  Having spent some time working for the government, I understand the layers of bureaucracy to be expected.  I've also had some clients go through this process and know it's critical to be fully informed and have support, whether it's a knowledgeable friend or family member, or a professional.  Now, on with the post.

Full disclosure:  The Social Security Help website is part of a network of disability attorneys who provide services to those in need of assistance.

Chronic Illness and Social Security Disability Benefits 

Chronic illness can affect every aspect of a person’s life. In addition to battling pain, fatigue, and other debilitating symptoms, individuals with chronic illness may also struggle financially. The expenses of specialized care paired with a person’s inability to work can cause significant financial distress. If you can no longer work due to a chronic illness, you may qualify for Social Security Disability (SSD) benefits. The following article will provide you with insight into how the SSD benefit programs work and will give you the information you need to begin the application process.

Social Security Disability Benefit Programs

The Social Security Administration (SSA) oversees the SSDI and SSI programs—two programs that offer SSD benefits. Each of these programs has its own set of technical eligibility requirements.

SSDI (Social Security Disability Insurance) is funded by taxes paid into the system by workers all over the country. Eligibility for SSDI is dependent on what the SSA refers to as, “work credits”. Essentially, work credits are a measure of an individual’s employment and tax-paying history. Learn more about SSDI eligibility and work credits, here: http://www.disability-benefits-help.org/ssdi/qualify-for-ssdi.

SSI (Supplemental Security Income) is a needs-based program that provides benefits to disabled and elderly individuals who earn very little income. An individual’s eligibility for SSI as well as their monthly payment amount is determined by their monthly income and financial resources. Eligibility for SSI is governed by strict financial limitations. SSI does not require work credits. Therefore SSI is often a good option for children or adults who haven’t had the opportunity to work and pay taxes. Learn more about SSI technical eligibility requirements, here: http://www.disability-benefits-help.org/ssi/qualify-for-ssi.

In some situations, applicants may qualify for both SSI and SSDI benefits.

Qualifying for Benefits

In addition to meeting the previously mentioned technical requirements, applicants must also be able to prove that they are disabled by their condition. According to the SSA, being disabled means having a condition that is expected to last at least one year and prevents you from performing substantial gainful activity. Engaging in substantial gainful activity means that you are earning over a certain dollar amount each month. In 2013, substantial gainful activity is $1,040 for non-blind applicants and $1,740 for blind applicants.

There are several ways in which a person can prove they are disabled and qualify for SSD benefits. The first is to meet the criteria of a blue book listing. The SSA’s blue book is the official guidebook of potentially disabling conditions. Under each condition is a list of very specific medical criteria that applicants must meet in order to qualify.

If you plan to apply for disability benefits, it is always a good idea to look over the physical requirements beforehand. This can save a lot of time and frustration down the road. It will give you a better idea of whether or not you qualify and can help you collect the necessary medical evidence. You can find all blue book listings on the SSA’s website: http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm

If you don’t meet a specific blue book listing, you may be able to qualify under a “medical vocational allowance”. A medical vocational allowance occurs when the SSA grants you benefits based on your inability to work rather than your specific symptoms. To determine whether or not an applicant qualifies under a medical vocational allowance, the SSA will examine his or her physical abilities, age, work history, and their ability to be retrained in different types of work.

The typical application process can take anywhere from several months to over a year. The SSA recognizes that individuals with severe health conditions may not be able to wait that long. For this reason, the SSA allows individuals with seriously debilitating illnesses to qualify for benefits in as little as ten days. This is called the Compassionate Allowances program. It is important to note that you do not need to fill out additional paperwork or request to be processed as a compassionate allowance. The SSA will evaluate your claim and will expedite it accordingly. To see if your condition qualifies for compassionate allowance processing, visit this page: http://www.disability-benefits-help.org/compassionate-allowances.

Applying for Benefits

Prior to beginning the application process, it is extremely important that you collect thorough medical evidence to document your illness and symptoms. You will not be awarded disability benefits unless you have medical proof of your condition and the limitations that it causes. Medical documentation should include records of your diagnosis, lab test results, treatment history, response to treatment, hospital visits, and even personal statements from your doctors. Collecting these records prior to beginning the application process will prevent delays from occurring.

Once you are ready to begin, you can apply online at the SSA’s website or in person at your local Social Security office. You should keep in mind that the SSD application process can be long and complicated. In fact, many initial applications are denied and require the applicant to appeal the decision. If your initial application is denied, it is important that you do not give up. The key to being approved for disability benefits is persistence and preparedness.

After you are awarded benefits, you will be able to focus on your health rather than your finances. If you have questions specific to your own condition, visit Social Security Disability Help or contact Molly Clarke at mac@ssd-help.org.

Molly Clarke writes for the Social Security Disability Help blog where she works to promote disability awareness and assist those applying for disability benefits. Feel free to contact her with any questions you may have at mac@ssd-help.org.

Monday, July 1, 2013

Research Roundup July 2013

2:19 PM Posted by Tiffany Taft , ,
Hey, it's July!  Summer is in full swing and it's time for another installment of our critically acclaimed Research Roundup.  This month we look into issues of public health and consumer protection.

Research.  Tastes so good.
  • In an attempt to combat research bias, post doctoral fellows at leading universities in the U.S. are pushing pharmaceutical companies to release detailed data from their clinical trials for public scrutiny.  This partially comes from increases in drug recalls and other "black box warnings" that have happened in recent years.  
  • We all have heard that the US leads the world in healthcare expenditures, even though we rank well below #1 in healthcare quality.  An interesting article sheds some light on what may be causing this, and the answer is kind of surprising.  Expensive surgeries?  Nope.  Rampant obesity-related illness?  Not that, either.  Colonoscopies?  Disco!
  • Roughly 50% of Americans will experience a mental illness at some point in their life.  Depression and anxiety can be debilitating, but how do these problems impact people at work?  Well, people with mental illness are 2-3 times more likely to be unemployed, call in sick more often and for longer periods of time, and tend to under-perform when they are at work.  The author offers some tips on how to combat the impacts of mental health issues on the workforce.
  • New York will be added to the list of states that require health insurance companies to pay for essential formula-based treatments for patients living with Eosinophilic Gastrointestinal Disorders (EGIDs).  Dubbed "Hannah's Law," patients in NY will no longer have to pay out of pocket for these treatments, which can cost tens of thousands of dollars.
  • From the "what the?" files...Stem cell transplants to treat Type 2 Diabetes?  It's being looked in to.
  • And finally, can your fork & knife influence how your food tastes?  Yep.  So if you're eating yogurt, find a white spoon for the best experience.
Dr. T