Sharing the Journey

Love comes in many forms, but today, in this blog, I am not going to write about traditional love of a spouse, a lover or a child.

I have a special love for a group of people who likely I will never meet in person.  We live across the country and across the pond.  We laugh together.  We encourage one another. We share information.  We share tears.  We challenge each other.  We cry.  We learn.  We love. We live with a common bond, a disease.  We share a diagnosis – rheumatoid disease.

We share a world where the public has little knowledge or understanding of this invisible disease that changes our lives forever.  Sometimes there is little understanding from our own families.  The impact of rheumatoid can be devastating and the meds, even worse.  Yet, we understand with perfect clarity because we share the journey.

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When I was first diagnosed I was in denial. I didn’t want to tell anyone mainly because that meant I had to acknowledge something I didn’t want to acknowledge.  I didn’t want to be sick.  I didn’t want to have something that could not be cured.  I had taken my life for granted – I was strong, athletic, competitive in sports.  My level of activity was cut significantly.  I lost the ability to do a lot of things I used to do.  I had a new life that I didn’t want — that terrified me.

One day I could not hold my camera.  I could barely walk.  I was terrified.  My first adventure on an arthritis forum was horrible.  It took a while before I would post anything again.  I finally found a site where people were supportive.  Someone eventually suggested we start a private group.  I set it up and people joined.

Our core group is great.  These are people who know what it’s like to live with RD.  We share about pain and meds and side effects.  We share about our families and work.  We share about our pets and vacations.  The one thing we all know is we truly understand each other.  This journey we share that binds us together is a disease, but we try very hard not to be defined by it, and we help each other do the same.  We are friends; we are warriors.  We fight our battles in the quiet stillness because most do not understand what this battle brings to our lives.

Yet, even in the stillness, we know we have each other.  Somewhere to go when we are hurting, need answers or reassurance and comfort.  We stand strong – together.

Today is dedicated to my love for each of the members of our group.  I am so very blessed to be part of this special team and to know these remarkable people.  They have become a valuable part of my life because I know they understand.  I know they will help.  They will be there in time of need.  And they will simply share a laugh to brighten my day.

We share this journey and we find hope in each other.

Love you my dear friends!  You are amazing and I am inspired by your lives.



Control and Fear in Medicine

The more experience I have with being a patient with two chronic diseases, the more the medical profession baffles me.

Today I logged in to Facebook only to see numerous posts concerning a new publication by the American Thyroid Association titled “Guidelines for Treatment of Hypothyroidism”.  I’ll provide a brief overview.  A committee was formed to review Levothyroxine (T4) and its effectiveness in treating hypothyroidism.

Levothyroxine (T4) has long been embraced as the “gold standard” for treatment of hypothyroidism and is “effective in most patients, but some individuals do not regain optimal health on T4”. Yet the study concludes “that levothyroxine should remain the standard of care for treating hypothyroidism, noting that no consistently strong evidence supports the superiority of alternative therapies.” No consistently strong evidence? All one has to do is go to social media to see the photos and read the personal accounts of how levothyroxine failed certain patients. Their stories are all the same – “this is what I looked like, this is me now; these were my symptoms, those symptoms are gone.” So, my question is why do we remain with one (1) drug recommendation in the standard of care.

Pharmaceutical companies produce thousands of medications and we have the choice of one. Cancer doesn’t – there are numerous drugs used for each form of cancer. Heart disease doesn’t, high blood pressure doesn’t, cholesterol doesn’t – there are numerous drugs used. I could go on, but you get the point. Those patients are not forced into taking one (1) drug whether it works effectively or not, they (the patient and medical team) are given choices to find the best one to address that specific disease. But – it doesn’t stop with simply the recommendation of one medication.

The committee states that patients who suffer from continuing thyroid symptoms, but have TSH in the reference range while on Levothyroxine should to be referred for mental health evaluation. So let me use my analytical skills – the medication for my thyroid condition is not helping the symptoms of the disease and I feel terrible and instead of reassessing the medication, I could be sent for a psych evaluation? This is not, repeat not, a mental health issue — it is an issue of my physician evaluating my symptoms and recommending the best medication. That means not a selection of only one (1) medication when others are available and may work more effectively.

I am confused and angered by the committee’s position that their guidelines claim that medical ethics prohibit prescribing drugs that are “inferior to the standard of care” and that patients who request “inappropriate therapies” do not have “full decision-making capacity.” They believe that while physicians are “taught that patient autonomy means they should cater to patient preferences”, yet if “patients are requesting inappropriate therapies this is a misinterpretation.” And their recommendation would then be to “protect patients who do not have full decision-making capacity – they must demonstrate understanding, appreciation, rationality and expression of a choice and voluntariness, in which there is no coercion.”

What this actually states and how it is being interpreted are interesting, almost laughable. As a patient I have to demonstrate understanding, rationality and a voluntary expression of choice and yet when I do and it is not the one (1) drug they recommend then I am not capable of decision making and basically the physician at that point will coerce me to accept the one (1) drug they have designated as the standard.

Physicians on the other hand are also being held captive to this publication. The guidelines warn that physicians who prescribe “substandard, unsound or untested medical procedures or therapies”, such as T3/NDT, could face “legal consequence or licensure revocation, as these ethical violations constitute medical negligence.” Oh, is that a threat?

So here are my thoughts and this is relative to any disease and treatment, not just hypothyroidism.

Why do medical professionals refuse to listen to patients and treat the symptoms as the patient describes them? Why are patients not believed?

If a patient is on a drug and labs are within acceptable ranges, BUT the patient still does not feel well, why would the first line of response by physicians be “send for a mental health evaluation.” I am not crazy, I AM SICK ! Perhaps we should consider that the drug is not working effectively on this patient and look for another course of treatment, which could include a drug.

If a physician or task force wants to discuss my “full decision-making capability” – don’t be a coward and hide behind a few pieces of paper, call me and let’s discuss this face-to-face. Are you going to sit across the table from me and tell me that I don’t understand and cannot make the best decisions for MY health?

I battled unexplained symptoms for several years prior to my diagnosis of rheumatoid disease. I learned to read, and read, and read and look up definitions until I had a good understanding. Do not tell me I am not capable of making a decision for my life. It’s my life. I was reading and researching and learning while the medical community completely dismissed my symptoms – until the day I was knocked on my bum and couldn’t get out of a chair and then diagnosed with rheumatoid disease.

And we end the guideline publication by making a reference that physicians, if they don’t go along with the information presented, could face legal consequence or licensure revocation. Seriously? If these guidelines are so compelling why do you have to threaten the physicians?

I could bring up the concern for conflict of interest.  What association would recommend one (1) drug only when others are available?  Does the association or any of the professionals involved in the study stand to gain any benefit by singling out Levothyroxine and promoting only that one (1) drug?  Do the drug companies who manufacture Levothyroxine provide financial support in form of funds to sponsor meetings for the association?  Do the drug companies provide funds for grants for the physicians?  It makes one wonder.

These guidelines are nothing more than coercion. They force the patient to accept one drug of the committee’s choice and suggest that if I complain about continued symptoms I should be sent for a mental health evaluation.  I do not want to be controlled in my health care nor do I want fear to permeate the decisions made by my physician.

If you truly want to “contribute to your ability to improve the lives of your patients with hypothyroidism” –

1. Listen to your patients.

2. Take their comments seriously.

3. Utilize any and all available medications for treatment depending on what works best for the patient and what the patient wants.

4. Partner with your patient. Respect their opinion.

5. Include patient engagement/patient activists in these guidelines.


GUIDELINES FOR THE TREATMENT OF HYPOTHYROIDISM                                      Prepared by the American Thyroid Association Task Force on Thyroid Hormone Replacement


Social Media – friend or foe

I admit it took me a while to embrace the social media frenzy.  It may have something to do with my corporate career where you have to be savvy with assessing people and their motives.  A couple years prior to my diagnosis I joined my first forum.  It was not a pleasant  experience, but I found a couple of people there who warned me about the bad things that could happen.

After my diagnosis I was desperate for information.  I decided to put my reservations aside.  I found a couple of resources that were helpful; places to go for research, to better understand this disease and, most importantly, friends who understood.  I found a few incredible people who shared the same diagnosis.  These are cyber friends.  While we’ve never met in person I treasure their support and appreciate all they have taught me.

One of those friends has gone on hiatus.  I am concerned for their health, but what troubles me more is the reaction of some people.  It’s like seeing hungry piranha when a fresh piece of meat is dropped in the pond.  While there have been many comments with speculations of very negative actions, not one person has mentioned concern for disease or health.

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I will never understand what compels people to be so vicious.  It could be any one of us.   Something – anything – could happen and suddenly posting in a silly forum becomes not so important.  Life happens to each one of us and while there are many who want to post about every aspect of their lives, sometimes it is not prudent to do so, maybe it’s not even possible.  Yet, why reach in the bowels of condemnation and ugliness?

Social media can be such a wonderful, resourceful tool, but it often is used to make comments that would never be made face to face.  It’s used to attack, condemn and disparage, even though you have no information or facts.

Remember, but by the grace of God go I 



How to Get What You Want/Need

Getting what you want or need in healthcare – is that possible today?  That was the topic of discussion with my rheumatologist during my last appointment.

I really don’t think much about the process of insurance.  It’s difficult to track at times, but essentially you go to the doctor, they file the information, the insurance provider determines the negotiated rates and pays their portion and then you get an invoice from the doctor for the unpaid amount.  If there is something out of the routine the doctor seeks approval from the insurance provider.   Sounds easy enough – most of the time.

But …. what happens when the insurance provider and the doctor don’t really agree.  Are we really prohibited from getting the medication or treatment that we want — one that the doctor suggests we need?

During my last appointment we discussed the results of a specific test.  I was somewhat surprised by those results and mentioned it to the doctor.  He responded by discussing medications.  While reviewing my labs, he suggested another medication I might try.  He was looking at my chart on the computer and then advised that my insurance did not agree with his choice, but they did allow two other medications.

His comment seemed odd to me.  I asked if the insurance company dictated which medications he could prescribe for a patient.  His response surprised me.

He told me that the insurance company did not dictate what he prescribed.  He then told me that if I took a prescription to my pharmacy and gave it to them along with my credit card I could get whatever I wanted.

What???  Wait – but that takes my insurance out of the picture, right?  He again said you can get any prescription you want by giving them your credit card.

I again asked – what about my insurance?  If it will not cover what you prescribe and I have to pay for it out of pocket, what purpose does the insurance serve?  I got no response.  However, once again he made the point that insurance did not dictate what he prescribed and that it was up to me.  For now I don’t have to worry about who might have to pay as the decision is to remain with status quo regarding my medications.

Months ago I wrote concerning a friend who encountered a significant issue with her insurance provider (The Scary Side of Insurance)  A treatment plan that had been approved and then denied by her insurance provider.  The issue is still not resolved after a year of inquiries.  And, as you know, if they do not pay, she is responsible.

It is not uncommon to hear from rheum-mates that their insurance will not cover a specific medication suggested by their doctor.  While some drug companies may offer assistance to patients in need, there is an application process.

This is a serious concern for patients — whether it is for a new medication or a series of treatments.

Have you had a situation where the doctor preferred one medicine for you, yet it was not the choice of your insurer?   Have you had to pay for mediation or treatment out of pocket?



The Follow-up Appointment

I have hesitated writing this post for several weeks.  Yes, I went back.  I really did.  I returned for my follow-up appointment with the rheumatologist.  Nervous.  Concerned.  Apprehensive.   So many emotions, but armed with my questions.

I wanted to discuss the results of the Vectra DA test.  I also wanted clarification for some of the other comments the doctor made, such as exactly what is my diagnosis.  I mentioned this in my post Patient Frustration with Physicians.

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I realize I’m typically a very serious person and don’t joke much.  However, I really don’t see any reason to apologize for this since illness and disease are not something I would joke about.  Apparently the doctor has a difference of opinion.

When I ask a question, I expect an answer.  It’s really a fairly simple expectation.  The answer can be brief, but enough to give me some knowledge to walk out the door with.  I can find reliable resources to read once I have a starting point and I rely on the doctor to get me started with his ‘expert opinion.’

It is typical for this doctor to answer a question with a question.   I told him of my concerns with the outcome of the Vectra DA test.  I asked about a supplement he recommended.  I asked about my diagnosis.  Each time he answered my question with another question.

I felt like I was dealing with a relative of the Riddler in a “Batman” movie.  So I suppose I now need to become the caped crusader for reliable healthcare responses?

I finally got a few answers, but I have to admit, I still have no clear direction.  Frustration should not be part of healthcare, much less a doctor’s appointments.  I remember my wonderful pediatrician, Dr. Perry.  He was great — understood my fears, answered all my questions and made me feel very safe and cared for. I didn’t worry when Dr. Perry was in charge.  What happened to the “good old days?”

I don’t envy what doctors have to endure today as they deal with insurance providers, government regulations, mandates for electronic records, etc.  I appreciate their wisdom.  All I ask is that our time together be beneficial to me.  Now to figure out what I think about the options of where to go from here.

What do you think about healthcare today?