About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Wednesday, May 30, 2012

Adventures with eye doctors: bait and switch!

One of the few pictures of me in my glasses...helping out my daughter's 3rd grade teacher.

My world has been jarred again as I see disturbing trends in our medical system, trends that immediately affect my health and the health of anyone who is a "complex patient," not your run-of-the-mill broken arm, kidney stones, nor dog bite, as examples.  Suddenly we have all sorts of health professionals who I have no idea what the heck their position is, much less what their training is.  What is the difference, for example, between a physician's assistant and a physician's nurse practitioner - and these are just two practioner titles being bounced about, with more being created each day.  And suddenly we are getting every type of semi-doctor out there "treating" us when what we really need, and even request, is an MD.

To me the titles I'm encountering are as frustrating as trying to figure out the hierarchy and function of the "dust man" on the moon to the "sweeping man" on the moon.  I don't care for this trend, as you can see.  In fact, after all the time I've spent in hospitals, as well as going to so many doctors from all over the eastern part of the US, and then all the other hospitals we dealt with in my daughter's care in the Midwest, my head's been spinning trying to figure out who all these "semi-doctors," (often at best) are, and why they can charge my insurance company for a doctor's visit when the visit was by someone who is NOT a doctor.

Ah, I know you are wondering what does anything to do with anything?  But as I tell my children, bear with me...there is always a method to my madness.

I must say that, to me, one of the most frustrating aspects of CFIDS/ME and fibromyalgia is that we really and truly are in the caveman era as far as understanding this illness when it come to "eye health."  In general, I think we're in the Middle Ages when it comes to understanding this awful illness that has devastated so many lives, but in regard to eye care, we are definitely back in the caveman era.

But first let's get onto the same page here. When I was growing up, we were always taught/told in very clear terms, the difference between an ophthalmologist and an optometrist....and that you definitely had to go to an ophthalmologist to have your eyes checked.  Only if/when you were cleared for all sorts of exotic and not-so-exotic eye diseases and disorders, and IF you needed glasses (as was always the case for me), were you then sent on your merry way to the optometrist.  And mind you, the optometrist was the "poor man's option," which even my immigrant parents who made so little money never settled for: eyes were sacred.

And so, I grew up, and hubby and I united in marriage and had our typical American family. I, as well as my hubby and my children, always went to an ophthalmologist for "eye health."  It was hammered into us that an ophthalmologist is an MD who understands the entire "picture" of the eye, whereas optometrists, with all due respect, only have a degree in glasses and were trained to see if there are obvious problems like glaucoma, etc. Granted, in relatively recent years optometrists are also being trained in certain eye diseases and disorders and thus been allowed to perform some procedures and treat some illnesses, dependent upon which state they practice in. It's kind of scary to me to have semi-doctor treating my eyes, but hey, it's SUPPOSEDLY my choice if I want to pay the whopping fee for a physician (hopefully) or go the less expensive and lesser-trained route of the optometrist.

All in all, I must add, these distinctions are a simple explanation just to suffice for our intents and purposes here today.  Oh I know that there are those out there who can pick out bits of errors here and there, but for my purposes, this distinction is enough, to get us all onto the same page, as I mentioned above.

My experience, my family's experience, my friends' experiences have always been that when you needed glasses, the testing and prescriptions were handled by the ophthalmologist unless he/she had an optometrist on the premises who would do the test to establish what the corrective lenses numbers were in order to get glasses and/or contact lenses.  But on the whole, we've always had a eye exam for glasses done by the MD after he/she closely examined the eye for any diseases, or other problems.  Ay!  It is sooo hard to avoid stepping on people's toes here. But darn it, the truth must be addressed.

When my eyes go funky, I know it's just the illness, but still, it's rather disconcerting.  I feel that when it comes to our vision problems - agh! in addition to all the other problems we need to juggle - we're so busy putting out other fires that consequently vision is crazily put on the back burner.  However, there gets to be a point where the symptoms we experience finally hammer us down to where we DO need to see an eye doctor.

The problem is - I'm now learning - that with the rare exception, our vision problems for the "normal" person are no longer on the radar of the VAST majority of ophthalmologists because seemingly no eye doctors (MD's) seem to care about "us," the non-challenging, non-surgical patients.  I'm not sure just how long this has been the case.  But what, perhaps, may be even more frustrating, is trying to find an ophthalmologist who has even heard of CFIDS/ME and fibro - or even cares!  In other words, they don't give a poop and they want to make a ton of money from surgical procedures with their high reimbursements and don't care about underlying diseases, the "thinking" part of their practice, for which they do NOT get very "good" reimbursements.  So, in a way, shame on us for allowing these procedures to be highly reimbursed and shame on us for allowing the "thinking" appointments to be shabbily reimbursed.

It really frightens me, when I allow myself to think about it, that there's been no one in the vision field who understands what the implications of these illnesses are on the eye.  Without understanding, how are we to insure the health of our eyes?

For the last fifteen years or so, I've had the sorts of vision problems that all of "us" have.

How many problems do we have with our eyes?  Oh, it sometimes seems as if the troubles are endless. Aside from the pesky problem of having to wear glasses and the constant changing of frames every few years, we also have dry eye to contend with, as well as vision that fluctuates from day to day, often from hour to hour.  We have light sensitivity, we have focusing problems.

But basically, what we have wrong is that the signal the brain sends to our eyes is all screwed up.  There are a host of reasons as to how our eyes will do day to day, and I think that it depends an awful lot on how much sleep we get or don't get, as well as how ill we are and whether we're in a healthier state than usual, or are in the midst of a flare, under-stressed, over-stressed - the permutations are endless.

I'm smack in the middle of having my old eye doctor retire and not having found a new one.  One of the reasons for the problems in finding a new eye doctor is that suddenly ophthalmologists are too .... well, "high and mighty" might fit the bill.  When I last went to see a new eye doctor, hubby specifically told the receptionist that we wanted/needed an appointment with an ophthalmologist and not an optometrist.  I'm now speaking of the doctor who I thought might have been hitting the bottle on the side (as described in my March 1 post). 

After a very complete history was filled in during the waiting room experience and then an extremely bizarre examination, my eyes were finally dilated.  As we were waited for the doctor to come back to finish the exam, I was so bored that I actually started reading the various diplomas on the wall and for a moment thought I was hallucinating when I saw that the doctor was not an ophthalmologist, but an optometrist.  Wow!  I couldn't believe my brazenness when I asked her, upon her return to the room, "are you a MD?"  I really couldn't believe my ears when she said, that, no, she was NOT an MD.  And how was I to see the MD?  Well, she, the optometrist made the decision as to whether or not a MD's time was warranted and he only saved his time for interesting cases and surgeries.  Given that we had taken a disliking to one another by now (my having "called" her on not being an MD), we both knew that there was NO way that I'd get to see the MD.  Interestingly enough, hubby had no "interesting" problems a few months earlier, but HE was given an appointment with the MD.  Hmmm.  

How I wanted to tell her just how interesting my case was!  When I went to the "get your glasses in one hour place" at the mall, after the fiasco of the unique experience of having two sets of wrong prescriptions and having to sit through another optometrist's exam, I discovered that the situation I found myself in was not unusual.  The optometrist who had to redo all the work of the previous optometrist told me quite frankly, "Good luck finding an MD who'll do an eye exam these days or look at anything but the most interesting cases which they deem fascinating or not."

How crazy is that?   And how is that that NO ONE reads charts any more, much less the histories that we patients spend how much time filling out?  

I've been on daily shots of pitocin (oxytocin) for at least fifteen years now.  There is no test that can measure if you have an adequate amount of pitocin in your body or not.  Given that my body is so messed up, my GP and I thought that there was a good chance that the pitocin in my body was low.  Add to that the fact that my first baby was a week late and was a mid-forceps delivery, that baby #2 didn't come out for three weeks and then had to be induced with intravenous pitocin and baby #3 was induced and then had to be extracted with a vacuum device.... Well, the chances were high that I did have a pitocin problem.  Unfortunately, no one's really sure what pitocin does in a body.  Everyone DOES know you need it in order to push out a baby, and there is anecdotal evidence that eyesight is affected by pitocin, but even there, we're into some murky territory.

The only real way to know if you are pitocin-deficient is to get a shot of pitocin.  If your vision improves in ten minutes, then you're in luck: it's a problem that can perhaps be remedied by a daily shot of pitocin.  And so, each day I get a pitocin shot and for a part of the day, my vision improves.  How much is not predictable, nor for how long, etc.  I'd really like to see an MD "in eyes" about this aspect of my health, given how important eyes are.

After this way too long post (congrats if you made it this far!) do you now see what I mean about being quite fearful of this lack of understanding of vision and CFIDS/ME and fibromyalgia?

Gives you something to think about.  Or as they used to say when I was growing up, "put THAT in your pipe and smoke it!"  Ponder about it a bit, is what it means. 

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