How much DO they know about Rheumatoid Disease ?

After writing my What Would Rheumatoid Awareness Mean to You? blog I started thinking of some of the crazy responses I have heard when I told someone I had Rheumatoid Disease.

Most often I hear something about they have an aching joint too; that I should try some miracle cream;  that I should use glucosamine; or I am asked if I use the golfer’s drug.  I’ve been told I don’t look sick and that I look terrible.  I once shared my diagnosis with a trainer who responded ‘getting old was a pain in the (rear).’  I decided against using her expertise.

While you have to shrug it off, it does surface a serious issue.  Most people have no clue what Rheumatoid Disease is.

I decided to take a look at Charity Navigator, a site that evaluates charities.  I did a comparison of fundraising for breast cancer, heart, healthy babies and arthritis (since Rheumatoid is listed as a type of arthritis).  What I discovered was shocking.

In 2013, in my area (a large metropolitan city), these were the totals for the signature  fundraiser event for each charity:  breast cancer — $1,400,000.;  heart — $2,000,000.;  healthy babies — $2,900,000.;  and arthritis — $150,000.

Those numbers confirm to me that people do not understand the impact of any of the hundred plus diseases that fall under the arthritis umbrella or that they do not feel arthritis is as important as other diseases.  Another example to lack of education/knowledge of Rheumatoid, or other forms Arthritis, was seen when I hosted a table for arthritis at a health fair.  I had little cards with simple trivia like children get arthritis, there are over 100 types of arthritis, that arthritis is the number one cause of disability and it’s not just a disease for seniors.  I cannot tell you how many people told me they were unaware.

The Rheumatoid Patient Foundation is an excellent resource for those with Rheumatoid Disease.  Their focus is for awareness, support, advocacy and a cure.  Here is one of their resources – information card about the disease.  They have other brochures available.

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Sunday, Feburary 2, is Rheumatoid Awareness Day.  

I hope you will consider joining or donating to the Rheumatoid Patient Foundation.  If you make a donation before February 8, your donation will be doubled by Crescendo Bioscience.  Make SuperBowl day a Super Day for those with Rheumatoid Disease!

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What Would Rheumatoid Awareness Mean to Me ?

This blog is my perspective of the challenge for a blog carnival on the topic What Would Rheumatoid Awareness Mean to You? from RAWarrior.

RPF RAD  Rheumatoid Awareness Day 2/2/2014   RPF Badge

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What they cannot see, what they do not know … impacts my life significantly everyday.

I feel invisible.  Misunderstood.  Ignored.  Criticized.   A diagnosis changed my life with a long list of debilitating symptoms that others cannot see and do not understand and thus, they do not recognize.

When I was first diagnosed in 2009, the rheumatologist looked at me and said “you need to get rid of the deer in the headlights look and get on with your life.”  As I left his office my only thought was “How?  How do I get on with my life?”

I didn’t even understand what I was now dealing with, much less how to proceed like nothing had changed, because everything had changed.

In a perfect world Rheumatoid Disease would be understood – by everyone.  I thought about this on a recent trip to an aquarium.  I stood and watched the Beluga Whales as they gracefully moved around the tank, stopping at the front as if to pose for photos.  There are guides who can tell you all about Belugas.  That is, they can tell you what they know scientifically – but they cannot tell you how the Belugas really feel being in that tank.

A Beluga was born to roam the ocean and being in a tank is very different, even with all the special precautions taken.  If I were a Beluga I would wonder what happened.  One day I could move about without restriction.  I could go anywhere I wanted.  I did not feel hindered or limited in any way.  I could feed when I wanted and was not dependent on someone tossing a meal my way.  I could be in control of my life, instead of something or someone else controlling it.  I could take care of myself in case of threat or danger.

WAIT !!! – that’s how I feel with Rheumatoid Disease.

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I live with the reality of Rheumatoid, but if I could dream I would see a world where people really understood the impact of this disease.  My family, my friends and even strangers I encounter would be understanding, compassionate and concerned.  They would know enough not to make silly recommendations for a quick-fix remedy. They would be supportive when I needed help and acknowledge when I need to adjust my responsibilities.  They would also support research and education for Rheumatoid with the same enthusiasm other diseases receive.  I don’t want pity, I just want people to understand.

I want drug companies and marketers to understand that I don’t fall for their slick advertisements.  The pretty pictures and videos only contribute to the misinformation the public now has.  There needs to be a dose of reality – of what this disease really looks like – it’s not gracefully walking down a beach or swinging a golf club.  This can be a devastating disease – don’t just sell a drug, teach me and the public about the impact of Rheumatoid, develop educational programs in addition to supportive materials for patients and families on how to cope better.

I want hospitals to develop educational and support programs (especially nutritional, fitness and daily living adjustments) for those with Rheumatoid and other autoimmune diseases in the same manner they do programs for cancer, diabetes and heart disease.

I would also like to see the medical organizations, like ACR, embrace more patient involvement in their conferences.  I know there is some patient advocate participation currently, but there needs to be more.  We desperately need to bridge this gap and work together for a better tomorrow for Rheumatoid patients.  There are aspects in medicine that patients may never grasp, but there are also aspects from the patient’s point of view that medical professionals could benefit from.  Commit to work together.

Medical providers could greatly enhance their care of patients with better education and interaction.  Often you are given a diagnosis and nothing else.  Education is a simple fix by having available a brochure, a list of resources, a referral to a foundation, etc.  Anything to read to begin to understand this disease.  After my diagnosis, I was given a legal release to sign in order to get the medication and directions to the laboratory for bloodwork.

I want my physician to make a deal to be a partner with me in this journey – listen to my concerns, talk to me, answer my questions, commit to make the decisions WITH me for my treatment and care.  Treat me and not the HAQ.  I have important information about my health and it needs to be recognized.  I want my physician to respect the time I have spent  to prepare for our appointment.  This is life changing for me, it is not a situation to be mocked or shrugged off.

This disease may be textbook to the physician, but I am not a textbook. I am a person with pains and fears and new inabilities that have replaced my previous abilities.

Last, I dream of a foundation that would truly support the patient with education, advocacy and a voice in the medical community.  That foundation currently exists, the Rheumatoid Patient Foundation, but it needs more support to accomplish the abundance of work that will benefit all Rheumatoid patients.

If they only knew.  If they only understood.  That’s my dream.

I would not feel invisible to my physician, to my family, my friends or others around me.  I would know that others understood my struggles and would be there with support, encouragement and comfort.  I would not be criticized for making excuses or being lazy when, in fact, I just can’t do something.  I would not be ignored when I can no longer handle a task and need help, or just a break from the responsibilities.  That world is one of support and understanding and hope.

I like the thought of that world – it’s like the Beluga when he is returned to the ocean and says “Yes!  Yes!  This  …  This IS the way it is supposed to be.”

Donna Thompson

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Treat the Person – or – Treat the Paper ?

Treat the Person or Treat the Paper ?   Or, better stated, my love/hate relationship with the Health Assessment Questionnaire (HAQ).

During my last appointment I left wondering who is being treated – me or the HAQ.  I realize this is a tool used by many physicians to obtain valuable information from patients.  However, I wonder if this form sometimes becomes more the focus of the appointment than I am.  Here are a few of my concerns …

Do physicians ever discuss this form with patients?  I have been to two rheumatologists.  Neither has ever said anything to me about the form, its importance or how it is used in their diagnosis and treatment of a patient.

My first doctor never touched the form.  He was always more focused on seeing and thoroughly evaluating the joints along with open dialogue regarding symptoms.  My current doctor reviews the HAQ first and then does a quick evaluation of joints.  I believe what happens in the exam room is totally based on responses in the HAQ.  This is based on my experience during appointments.

Definitions based on ‘whatever it means to you’ do not give a clear understanding of the patient.  A few months ago I asked my doctor to define the word “pain” used on the HAQ.  His response – “it’s whatever you think it is.”  What I discovered is that is the actual direction given with this form – the patient should respond “using their own frame of reference” and “whatever it means to them”.

I have a concern with definitions.  Take pain for example.  My battle is not so much with pain, but a list of other symptoms.  However, if I define pain only as “ouch, I hurt incredibly bad”, then ratings on the form would be lower.  Unfortunately, that does not give an accurate assessment of how I’m doing overall because it does not acknowledge all those other symptoms.  A low number in the rating and doc thinks I am “OK”, but is that accurate?

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What about all the information that is not collected on the form?  For example, does a patient use devices or aids to do routine tasks.  I can answer a question about walking a distance, but if it does not allow me to say I use a cane when I do this, how is that helpful?  The questions on this form simply do not collect enough information to make an complete assessment beneficial to the patient.

What about that long list of ‘other symptoms’ on the form?  I admit I have become indifferent about this information because it has never been mentioned or discussed during my appointment.  It leaves me feeling it is not relevant.

During that difficult last appointment the only comment the doctor made after viewing the HAQ was ‘so, you have no pain’ followed by a very quick check of some joints.  I really have no idea how he could possibly detect anything with my hips, knees, ankles or feet as there was not even a full movement of the joint and he looked at nothing but my hands.  I suppose he didn’t notice me hobbling out of the office.

That gets us to the recurring importance of patient involvement.  It is not only about filling out a form and getting the patient’s perspective of their symptoms.  Discussion during the exam is also critical.  Perhaps patients should also be involved in the development of a form since they add a real-life perspective that doctors do not experience.  These forms represent only a portion of the information a doctor should be evaluating.  Input direct from the patient is critical, but only if that information is unrestricted.

Do you complete a health assessment questionnaire at your appointments?  Is it discussed with your doctor?  Share your experience and your thoughts.

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Don’t forget – February 2 is Rheumatoid Awareness Day !

For details –  rheum4us.org

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Are You Compliant ?

I recently discovered an article on Medscape asking “Why Are So Many Patients Noncompliant?”    The article details the frustrations of physicians concerning a growing number of patients who do not follow their advice or treatment advice, specifically with prescriptions.   The article views noncompliance on the part of patients as one of the most difficult problems with regard to physicians providing “optimal care.”

There were many reasons discussed concerning why patients are not compliant.  However, the number one reason was “forgetfulness.”  I was quite surprised with this one as I don’t have an issue with forgetting a medication.  The reason that concerned me more in the discussion was “not understanding.”

I am a patient with a chronic disease, which resulted in continuous prescriptions.  When first diagnosed I was given a paper to read that outlined the side effects and warnings for the drug.  Along with that information was a signature line.  It was a legal document confirming that I had been made aware of the dangers of the drug and was still willing to take it.  If you did not sign the document, you did not get a prescription.

With my second specialist there has been no discussion of the drugs.  I have advised when side effects were difficult at which time I received additional prescriptions to combat the nausea and stomach issues.

The article did mention a disconcerting fact that on the average with a new prescription a doctor spends a whopping 49 seconds discussing the drug.  I wish that statistic was a little more comforting.

Here’s my experience.  I have been taking a medication for four years for rheumatoid disease.  Not quite two years ago the doctor lowered the number of pills each week.  However, the doctor never changed the dosage with the pharmacy.  I advised them it was incorrect, but they said they would not change the prescription unless notified by the doctor.  (I do understand that protocol.)

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During the next doctor’s appointment I advised the nurse and the doctor that the dosage was incorrect.  I thought it was important to have the correct dosage on the script, especially if there were ever an emergency where you had to advise medications and dosages.  The doctor seemed completely unconcerned and even told me I would have extras if I needed them.  (Huh?!?)

One of the comments made in the article was that once given a prescription the patient is “generally unmonitored by the healthcare system.”  I actually find this one rather amusing and insulting – that I need to be ‘monitored’.

My insurance provider has sent brochures to me about the importance of taking medications as directed.  I assume this is in response to possible monitoring my records.  This takes us back to the correct dosage issue.  If the doctor tells me to take less pills a week than is on file at the pharmacy, the rate at which the prescription will be refilled is going to be different than expected – but this makes me look like I can’t take a prescription correctly instead of the correct information not being given to both parties.

My dog spent one year going to an eye specialist.  He was great and the medical community could take a lesson from this veterinary specialist.  He was thorough and quick in his appointments.  You almost had to trip him to ask a question because he was so focused and efficient with time, but he was willing and thorough to respond.  Also, when he prescribed medications his assistants would walk you to check-out, give you each prescription, explain what it was for, how to give it and how often and then ask if you had questions.  It took less than 5 minutes and the veterinarian did not have to spend (waste) his valuable time explaining this information.

I realize life for a doctor is very different today than in the past — but is it also very different for the patient.  Both parties need to find a way to best use the time together and share the information necessary for successful healthcare.

What do you think about compliance?  Do you adhere to doctor’s orders and prescription directions?  Are directions and medications sufficiently explained to you?  Where do you go for advice, if not to the doctor?  Do you get everything you want to accomplish done within your appointment time?

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Remember …  February 2 is Rheumatoid Awareness Day
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Dear Doctor …. Let’s Make a Deal

Frustration – the feeling of being upset or annoyed, especially because of inability to change or achieve something.”

My mantra for today – I have no ability to make this disease disappear.  I have no ability to make someone accept patient involvement.  I have no ability to make someone recognize the value of a patient centered foundation.  (Even though I tried, as discussed in my last post – Was it Something I Said)

HOWEVER, it also does not mean that I will quit trying.

Having been diagnosed with a chronic disease I feel more strongly about patient involvement and have much less tolerance to “fluff” in the form of confusion or a frivolous attitude.  I will continue to be directly involved in the decision making for my healthcare.  I realize that may involve finding a physician who believes more strongly in partnering with me in this journey.  I still have no idea what triggered the direction of my appointment – and that bothers me.

This issue has made me think specific to what I want from my medical professionals.  I’ve experienced some great professionals in my lifetime, but it only takes one to upset the trust you have, or need to have.

So, here is an open letter to my doctor as a follow-up to the frustrating appointment …..

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Dear Doctor,

1.  Above all, understand this – my health is extremely important to me, especially now that I have a disease that will live with me the remainder of my life.  I realize I am only one of thousands of patients you see, but for the very short time I am with you, it’s all about me.

2.  Please be clear in your diagnosis and explanation. It does not need to be lengthy, only clear and concise.  Don’t throw a new diagnosis in there and walk out the door.

3.  Treat the patient, not the HAQ.

4.  Respect the fact I do try to educate myself to have the best conversation possible with you.  I do care about the time we spend together and want to make the most of it.

5.  Confusion does nothing positive for our appointment.  It only leaves me fearful and uncertain.

6.  I don’t mind a lighthearted comment or two, but I do NOT need continued metaphors, euphemisms or joking when discussing my health.

7.  I realize you have a lot on your mind and schedule each day, but I wait far past my appointment time to see you and my apologies, but I am not concerned that your staff messed up your schedule and booked you in two different locations on one day.

8.  Treat me with the same respect I treat you during our appointments.

9.  Realize patients are essential for your profession and livelihood.

10.  I want us to be partners in the journey …. can we?

Sincerely,

Frustrated

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Remember …  February 2 is Rheumatoid Awareness Day
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