Invisible – Accepting or Rejecting the Role

I have heard rheumatoid disease referred to as an invisible disease, like many other chronic diseases.  It has been classified as an invisible disease because while you may look ok to others and keep going with work and responsibilities, inside you are dealing with pain, fatigue and other ongoing symptoms of the illness.

I was watching Dr. Phil today – ok, at least it’s an entertaining show that helps me pass the time when I feel terrible.  His second guest on the show was a woman who had fibromyalgia.  The woman described her pain and fatigue.  She was concerned for the negative impact her illness was having on her marriage. She said she felt she was not living, only existing.

Then her husband spoke of how her illness was “frustrating” and that when he was on his way home from work and she’s tired and in bed, his thoughts were “oh, no, not again”.  Then he said “it really does bring me down and puts me in a bad mood.”

Are you kidding me?  But wait, how many of us with these ‘invisible’ diseases are misunderstood by those around us – not just a spouse, but family, friends, employers?

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When we were kids, my brother played little league baseball and my dad used to hit grounders to him for practice.  I was only six at the time, but well remember my dad telling me to put on the glove and he would hit one to me.  The first grounder hit a rock and caught me right in the throat knocking the breath out of me.  My dad had a quote – ‘pick up some dirt and rub on it.’  Even at six I didn’t think that would help, but I did try to be tough and keep going.

Even now I find myself doing the same thing – be tough and keep going.  However, when you’re talking about a disease, is that really the best thing to do?  After five years of struggling to keep up with what I used to do, I have finally (finally) come to the point where I have to set more limits – and, unfortunately, those around me often don’t understand.

We hide the pain and fatigue, we push when we shouldn’t, we pretend things are normal when they are definitely not.  Invisible, yes!  But – we have the ability to accept or reject the role of invisible.  I no longer care about being a superhero.  I want to be understood.  I want to take better care with how I spend my time … and energy.  I want to enjoy more.  I want to be an advocate, for myself and others.  I want to encourage.  I want to understand and accept this new normal.  I want to surround myself with professionals who will help me, not frustrate me.

I want to live – not just exist.

Want to join me?

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Confirmation and Gratitude

Today I want to take the opportunity to say thank you to Crescendo Bioscience, developer of the Vectra DA test.  Crescendo Bioscience is a molecular diagnostic laboratory focused on rheumatology.  If you are not familiar with the Vectra DA test, please visit their website to read their explanation of how the test works.

Crescendo Bioscience states they are “developing quantitative, objective, biology-based tests to provide rheumatologists with deeper clinical insights to help enable more effective management of patients with autoimmune and inflammatory diseases.”  While I realize this is one part of a difficult process in treating rheumatoid disease, at least it is a valuable part.

When my rheumatologist ordered the test I focused on learning more specifics.  Along with  the details of what the test evaluates and how it scores the results, I also discovered the test is costly and sometimes not covered by insurance.  I admit I was a little concerned.

About a week after the test I received a very detailed letter from Crescendo Bioscience.  They explained some basics about the test.  They also explained they work with your insurance company to obtain coverage for the test, including appeals, if necessary.  In addition, they have payment plans which you can apply for if there is an issue with insurance.

Their letter was very clear and informative.  They also provided a couple of resources for those with rheumatoid disease.

Crescendo Bioscience was very thorough in their communication to me, which was good (and comforting) since I received none of this information from my physician’s office concerning cost, potential issue with insurance coverage or potential assistance from Crescendo.

As mentioned in a previous post, I was quite surprised by the results of my Vectra DA test. And while some may dismiss my symptoms or concerns, at least this test confirms to me that there is disease activity.  As mentioned, I realize this is just one tool for rheumatoid disease, but at least we have a company that is focused on this disease.  I am very thankful for their commitment.

So – thanks Crescendo Bioscience.  Your work gives us hope.  Perhaps we’re not so alone  fighting the battle.  Maybe now they’ll believe me.

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Vectra Results In … Now ?

I wish I could start this post with a little bit of humor, but it’s just not possible.

I had an appointment with my doctor seven weeks ago.  If you have been following the blog, you will recall it was not an easy one.   At the end of the appointment he suggested the Vectra DA test.  I agreed, but knew very little about it.

It has taken me seven weeks to get the results of the Vectra DA along with my regular labs.  The results were complete two days after the appointment.  Something happened and my regular labs were not entered into my file and I’m not certain where the Vectra results were.  No one had missed the results – except me.  After I called for the second time they looked for and found the results.  My copy finally arrived in the mail today.

I have to admit I got very anxious opening the envelope.  There it was — the result in the little black box.  My score placed me in the “HIGH” category.

The Vectra DA test looks at 12 biomarkers that were found to have the best ability to evaluate Rheumatoid disease activity.  The test uses these 12 biomarkers to determine a single score that relates to the level of disease activity.  The three categories are Low, Moderate and High.

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I cannot speak for my rheum doc, but from comments made, I don’t think he was expecting a high or even moderate score for me.  My Sed Rate and CRP have been within normal ranges.  He recently did not think my symptoms were indicative of Rheumatoid.

I have no idea what is next.  The staff made no comment to me about the Vectra test when I contacted them, so I suppose I have to wait for the next appointment.  I guess this test does confirm my diagnosis of Rheumatoid which was somewhat dismissed recently.  It confirms why I feel so bad all the time.  It confirms all the many symptoms that concern me.

At the very least, this is a good example why it is critical for all patients to be actively engaged in their healthcare.  You should request copies of your labs and other diagnostics.  Ask questions at appointments.  Research.  Read.  Whatever it takes.  Be your own advocate.

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What If …….. What Now ?

It’s one of those times in life when you’re not quite certain what happened and even less certain what to do next.

Back to the frustrating appointment, the one I really, really want to get behind me.  It has now been six weeks.  The rheum doc did the regular blood work as well as another specialty test (the one that was quite expensive).  In addition, my primary doc had requested another test that was done at the same time.

I knew my regular doc did not have a copy of the labs because I went to him with the flu two weeks after my rheum visit.  I called the following week, three weeks after the rheum appointment, and asked for the test results to be faxed to me.  I was curious to know the results and since I had received no communication from the rheum doc I took the initiative to get the results.  As a routine, I like to keep copies of all my labs and other diagnostics.  

At the three week call, I was told the regular labs would be faxed, but she would have to check on the specialty test.  Nothing was ever faxed.  No one ever called me.  This was all curious because the vendor for the specialty test had filed with my insurance company two days after the appointment, so I knew the draw was not lost in transit.  

Three weeks later, now six weeks post appointment, I called again.  The lady said she would fax the results.  A few minutes later I watched the fax print and knew it didn’t look right.  I took the pages from the machine and each section said “No Results Reported.”

I called the rheum doc’s office again and left a message for his assistant.  I explained what had happened.  She called me yesterday afternoon and said she was going to get the  tech to secure a copy of my lab results and she would mail them to me.  She did confirm she already had the specialty test.  

Early this morning I received another call from the assistant.  She said they got a copy of my labs and one of the results mandated an increase in medication.  She was calling it in to the pharmacy.  I asked why the labs were lost.  She said there was a problem with their electronic system and they were not really lost, they just didn’t come through.

workers DSCN3000                                                                    (Sometimes you need two people working together on a task.)

So – What if I had not called them?  What if this were a much more serious situation that needed immediate attention?  I know I am a very detailed, organized person and I realize others do not work at the same standards as I do.  However, if I had not called it would have been five months before my next appointment.  At the six week point no one had noticed my labs were never reported to my records.  This concerns me.

I realize some do not embrace patient involvement, but if I had not been involved no one would have noticed the labs were missing from my records and no one would have identified an issue that required a medication change.

This is an issue of trust for me and it emphasizes the critical necessity for patient involvement in every aspect of their healthcare.   It begs the question – what now?

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My Life in the Waiting Room

I am a photographer . . . . . a photographer who seems to spend a lot of time at the doctor’s office recently.  I like to capture images that show the beauty of God’s creation, but at times I like the abstract, too.  I took this photo while sitting in one of those waiting rooms.  Looking at this image made me think how much Rheumatoid Disease has changed my life.

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As with most people diagnosed with Rheumatoid, I have two lives – the one where I “used to” do everything I wanted to do and the one now, with a whole list of new realities and limitations.  I admit there are times I long to have that previous “used to” life once again.

This photo immediately reminds me how alone you feel in a waiting room.  Every time I find myself sitting in a waiting room I realize this disease is mine and mine alone and with that you come to understand that while you may have support from others, the full impact is yours alone.  When the lab tech cannot find a vein, it is my arm throbbing.  When a joint is manipulated abruptly, it is me that aches for the remainder of the day.  When a medication is discussed or given, I have to deal with the side effects.  When I do too much, I feel the impact with pain and stiffness.  The fears, those are mine alone.  Oh, and a dramatically changed life, that’s all mine, too.

There is also a harsh reality you feel sitting in a waiting room.  You can no longer deny the disease, the symptoms, the diagnostics or the treatments.  I admit sometimes I imagine in my mind that I don’t feel as bad as I think or that perhaps I can really do those things I used to do.  However, there is no pretending in the waiting room.  You are there for a purpose and that purpose is a disease that will be your partner for the remainder of your life.

Through all the feelings of being singled-out and alone, this disease has taught me a lot about myself.  I have learned how to be less than perfect and perfection has long been a quality high on my list.  I have learned to change my expectations of myself as my abilities have changed.  I have learned to research on my own and try to find explanations and answers about this disease.  I have a greater understanding and compassion for others who suffer with health issues.  

While I have always been in love with nature and the beauty of God’s creation, I have found that I have a more keen sense of appreciation of the beauty and uniqueness of things around me.  The activities I do get to experience are more precious and appreciated.

The next time you sit in a lonely, cold waiting room I hope you will think about what you have learned from this disease and how it can change your life for the better.  And, also remember that you are not alone, we are in this journey together.

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