Month: April 2017

Whether I Live or Die

For a long time, I was so sick that I was unable to advocate for myself. I didn’t have the ability to think coherently, and I didn’t have the energy to fight for care (not “good” healthcare, not “better” healthcare, just healthcare Period).

[Fortunately, I seem to be responding to recent medications, which is giving me more of an ability to advocate for myself.]

When I became absolutely desperate, I scraped myself up and went to my Tricare PCM to fight for care. I didn’t get half of what I needed, but I got a little.  Very little.  (He also tried to kill me by prescribing the wrong meds, against my protests.)

Do you have any idea how dispiriting it is to spend all of your energy on one desperate fight for survival, and fail?

I went back to lying on the couch in front of the television in a dark room.

What really made a life-altering difference was when I finally started receiving care from the VA. (Yes, my experience has been mixed, and yes, many veterans are still receiving inadequate care from the VA.) However, my VA PCM, though horrendously overworked, listened to me, believed me, and started getting me the care I needed.

If not for my VA PCM, I would have lost the use of my left wrist permanently.  I know this to be true because my orthopedic surgeon informed me that this was the case.  After 27 months of neglect by Tricare, my wrist was almost beyond repair by the time I finally saw a surgeon.

In addition to a badly damaged left arm, I also have a chronic, debilitating disorder.  After 15+ years, I still have only a partial diagnosis.  However, I have been unable to get the help I need from Tricare.

I went a little over a week ago to try to see a Tricare Patient Advocate.  I got as far as the receptionist.  He asked me what I wanted.  I told him that I had complex health problems and needed someone to help me manage my case.

I told him I wanted to know that *someone* in Tricare actually cared whether I lived or died.

The receptionist told me that if I filled out a bunch of forms AND WENT AND FOUND MY OWN PROVIDER THAT UNDERSTOOD MY DISORDER AND WAS WILLING TO OVERSEE MY HEALTHCARE, I could apply for a waiver for an off-base provider.

Why this response was completely unhelpful:

  1. There are literally only a handful of doctors in the US who understand the disorder my symptoms seem to suggest.  None of them are in the city where I live.
  2. There are very, very few doctors who are willing to take on a patient with a chronic, complex health condition.  They don’t get paid to deal with complicated patients.  The system is not designed to reward those behaviors.  (In fact, I was told that I would not be accepted as a patient at my nearest MTF because I was too complicated of a patient, and they only take the healthy ones.)
  3. I didn’t come to you to get permission to keep doing all the work of overseeing my healthcare by myself.  I CAME TO YOU FOR HELP WITH MANAGING MY HEALTH.

BOTTOM LINE:  I went to Tricare Patient Advocacy for help, and was told to help myself.  I said, “My case is complicated.  I need help managing it.”  And I was told, “Go find a civilian to help you manage it.”  I asked Tricare for help when I was at the end of my rope, and their representative sent me away to fill out a bunch of forms that would only be useful once I had found my own provider.

Action Items: I sent an email requesting a case manager.  If this is unsuccessful, I will file a complaint/grievance with Tricare.  (On a good day, when my brain is working and I have enough energy.)

Reflection: How many people are in the Tricare or VA systems that are too ill or disabled to fight for the care they desperately need?  Who fights for the warriors (and their families) that can no longer fight for themselves?  Do anyone actively care whether they live or die?

Update: Case Manager assigned within 24 hours of email being sent.

 

When Your Medical Practitioners Don’t Believe You

I just read this blog post, and it reminded me of so many experiences I have had with medical practitioners.  Bad experiences.  Frustrating experiences.  I’ve been meaning to blog about them for a while now.  I guess this is the impetus to do so.

As Lisa recounted her negative experiences with medical professionals, I flashed back to some of mine:

The doctor who told me, “I’m not saying it’s all in your head, but…”

The doctor who angrily asked me what I wanted from her, and angrily snorted when I responded, “Improved Quality of Life!”

The doctor who didn’t know what exactly was wrong with me, but wanted to give me Prozac to make me “easier to deal with.”

The medical practitioners (plural) who have endangered my life by prescribing medications that could cause a patient with my (known) condition to have a stroke.

The PA who simultaneously prescribed TWO medications that could give me a stroke, even though I pointed this out to him.

The pharmacist who wanted to fill these prescriptions, even though I pointed this out to her.

The doctor who prescribed a medication that caused me to lose one year of my life to clinical depression.

The doctor who refused to help me titrate off of this medication ( a gradual decrease of dosing; required in this case because stopping cold-turkey could induce seizures).

The multiple doctors/PAs who ignored symptoms that “didn’t fit.”

The multiple doctors who refused to believe that I had torn ligaments in my arm, and would not refer me for MRIs, which led to me almost losing the ability to use my wrist for the rest of my life.

I used to fly an  Air Force jet worth over $600 Million.  I was trusted to safely fly that aircraft, conduct sensitive missions, and keep all of the personnel onboard safe.  But healthcare practitioners treat me like an idiot, despite the fact that I frequently know more about my specific conditions than they do.

I respect the health care providers who say:

“You know more about this than I do.”

“You are the expert on your own body.”

“You have become your own specialist.”

“I will refer you to the specialist you are requesting, because this is beyond my area of expertise.”

I do not respect the ones who say:

“You don’t know what you’re talking about.”

“You couldn’t possibly have that.”

“I’ve never heard of that.”  (“And I don’t want to learn about it”… is implied by their actions.)

“You don’t need a specialist, I can treat this myself.”  (Usually followed by prescribing the medications that can give me a stroke.  NEWSFLASH: You don’t know as much as you think you do, and you’re gambling with MY health!)

“I don’t think the medication I prescribed is responsible for that (known) side effect.  Just give it a while longer to take effect/take these other medications to treat all of the many side effects.”

And recently, as I have explained to multiple doctors/PAs/Nurse Practitioners that I have found recent research that seems to explain EVERY ONE of my symptoms, and therefore I believe I have found my diagnosis:

“I don’t believe that’s a real thing.”  (As if ignoring research will make it go away.  If we all choose to “not believe” in cancer, will it go away?  No?  Well, then, neither will my condition.)

I have had 15+ years of frustrating experiences with Tricare, as my health condition has declined from chronic to chronic, debilitating.

I cannot work, and I cannot continue my education.

When I was healthy, I thought that doctors were like mechanics: If you “got broke,” you went in and they fixed you.

I have learned that sometimes when you get broke, it can’t be fixed.  And sometimes, doctors don’t really care if you get fixed – they get paid to see you for 15 minutes, or perform a specific procedure, NOT to think, question, or improve the patient’s quality of life.

I know that there are good healthcare providers out there.  But I haven’t met very many of them.

Bottom Line: In my experience, most healthcare providers are neither capable, nor desirous, of working with patients who have complicated health problems.