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.

a chairs web

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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Can’t We Just Be Friends ?

I saw a comment on another blog last night stating ‘my body’s attacking me.’  If you have Rheumatoid Disease you understand what that really means.  However, sometimes you just have to wonder can we really be friends with our body any longer when it apparently has taken out a vendetta against us?

I had a huge photography event recently.  I curate an annual show in a gallery and while it is a fun subject, it is a lot of work.  The two weeks prior to the show bring a lot of last minute duties that are critical to the success of the show.  That’s when it started.

It began with a scratchy throat.  This is not so unusual since my diagnosis, as I will have a sore throat one night and the next morning I’ll be fine – but not so this time.  The next day the scratchy throat was still a problem and by the evening I had added a cough.  That night things got even worse.  I coughed non-stop, all night.  Next was severe chills.  I have no idea how many blankets were piled on top of me, but I finally got warm.  I was able to hang the show the next day, but I felt terrible.  I left the gallery and went to the doctor, who said, with a sense of humor, yeah you knocked that one of out the park, you have the flu.

Did I mention that I adore my new primary physician.  He’s a down-to-earth guy who is easy to talk to and has a very practical way of dealing with health issues.  I am very blessed to have found him.

I also now know that Tamiflu is a miracle drug.  After a couple of days I felt much better, but the cough continued.  I usually cater the exhibit’s reception, but obviously decided against it this year.  So I had a few more duties with ordering the food.  Hubby helped me with the event and everything turned out great.

I thought I would be able to rest the next day, but my quirky immune system thought otherwise.  I developed hives and have spent the last week with random bouts of excessive itching.  I went back to the doctor but the hives had disappeared by the time of my appointment.  And, yes, later that evening they returned.

snow_DSC6127

Making matters even worse we were hit by an ice storm and without power or internet for a few days.  There’s nothing like having the streets covered with ice to calm your concerns about how long it will take to get to the ER “if” you need to go.

So, I have a question for my immune system – isn’t it enough that you have turned against my body with this Rheumatoid thing?  Can’t we be friends again …. can we at least try?  Please.

Caught in a Riptide

For all the times I felt I was prepared and asked the appropriate questions, this time I was not.  I recently posted about my frustration with an appointment.  I should be getting beyond that frustration, but it seems some lessons come in fragments and drag out the learning process.

I recall a friend of mine who was in Costa Rica and got caught in a riptide.  He said there was a moment of panic, then he knew he had to calm himself and be smart in order to get out of the current.  He was alone.  He went with the current and drifted about two miles down the beach. Then he felt something change and he was able to swim out of the grasp of the current and back to the beach.

During this appointment I felt as though I was caught in a riptide.  I knew I was in a situation I could not change – this time, it was a conversation about my health.  No matter what I said I knew it was a lost cause and only brought sarcasm and rapid-fire comments and questions from the physician.  There was a part of me that just wanted to cry, but I don’t do that often.  So, I just sat there and kept trying, unsuccessfully.

river small_DSC8628

That conversation left me completely lost as to actual diagnosis, treatment plan and even what triggered the response I received.  The physician ended the appointment suggesting a new type of blood test.  He very briefly described the test and asked if I wanted it.  I agreed even though I was not certain why it was necessary – I really just wanted to leave.  Which is exactly what happened next.  He walked out of the exam room and never said another word.

What I found out, after receiving a two-page letter from the company who developed this test, is it cost about $1,000 and it is not always covered by insurance.  That important point was never mentioned and would have had some impact on the decision for the test, especially since it is not truly a medical necessity.

It has been over a month since that appointment.  I recently called to get a copy of all my labwork along with this specialized test.  They were going to fax it to me, but they never did.  So, I have no clue what the results are and have heard nothing from the physician.

With all of my very strong analytical skills, I have still not been able to determine what went wrong during that appointment or where to go from here.  Is this someone I would trust in a time of true crisis?  Do I feel comfortable going back to that office?

I don’t think my expectations are too high, but it is obvious there are decisions to make.

 

What it Cost

Recently I wrote a post about Patient Frustration with Physicians.  Today, I guess I am even more speechless.  I received the bill for that appointment.

I understand that physicians have levels of billing for their services during an appointment. However, my veterinarian provides more detail for their services than my specialist does.  Every appointment with this physician, except the first two appointments, has been at a level designated at ‘established patient, moderate level 3’ and at the same price.

This last appointment was less time than any of the previous ones.  I did not require any special care.  I did not require any specialized treatment.  Nothing out of the ordinary. Nothing!  However —- I got my statement today and was billed for an ‘established patient, high level 5’ at a cost more than double the cost of those previous appointments.

I have a brief discussion in each appointment.  So, it could not possibly be that one question about treatment caused the appointment to go from ‘moderate level 3′ to high level 5’.

Again, this appointment was absolutely no different from the previous moderate 3 levels.

If the patient did not represent the patient, who would?  One can only wonder.

lucy b