I've run out of perky

[nyxie63]

Yup. Perky has left the building. Anger has too. Instead, I have exhaustion, disappointment, and... dunno what it is. A feeling of being lost, I guess.

I'm not looking for hugs, which is why I'm posting here. Instead, I'm hoping to get some constructive suggestions on how to keep fighting/advocating for myself.

In the last 2 weeks, not a single doctor has gotten back to me. Not on the picc line. Not on the holter monitor results. Not on the seizure. Nuthin. While these were urgent matters at the time, apparently, now that I'm not standing directly in front of them (with a check in my hot little hand), these matters are no longer important.

I've called. I've sent faxes (note the plural). Other than camping out in their waiting rooms, I don't know what else to do.

What's the use of doing more research or pushing for answers if my drs simply don't give a rat's be-hind?

Do they really see me as a nervous and/or difficult patient not worth dealing with or only seeking attention? I've been called both, to my face, although not by the llmd.

Have I alienated them completely by doing research, asking questions, and wanting outside opinions?

Do I expect too much from them? Should I start over? Re-think my approach?

So just exactly how do you keep fighting when you don't have it in you anymore?

[cobweb2]

Here's a hug--like it or not-now don't hit me! ;D

I often think doc's just don't realize that the decisions made are our whole life-and really only amount to a fraction of their life.

I would have been exhausted too if I had that much time to think about the picc line. I was fortunate that it was all set up within a week's time.

And waiting for the results of a test- as important as a heart monitor-no sensitivities to the angst of the patient.

I still don't know the results of my neuropsych-the insurance company would not release it to me. I will find out the results , (Maybe !) when I go see my LLMD on Monday.

It's beens over a month on that one. I know from experience if I call the office I will hear-we can discuss the results at your next visit.

Another case scenerio for me was when I had a very important test, and was not told that the particular doc then went on vacation!!!!!!I found out when I anxiously called the office.

My advice- take a nap.
Now is a good time to employ the Serenity Prayer. Which I forget right now, darn, wait-it's coming back to me...

God grant me the serenity to accept the things I cannot change.
Courage to change the things I can,
And the Wisdom to know the difference.

Applied to your immediate moment-Sunday afternoon-there's nothing you can do about it right now. Tomorrow morning however-make your own call backs.

So a nap or a good movie makes perfect sense right now.

[LymeEnigma]

Nyxie, unfortunately when it comes to Lymeland, there are a lot of issues for the exceptional patient who is trying to be informed and responsible about his/her treatment. Question either side, IDSA or ILADS, and you're begging for problems.

Long ago I gave up on trying to find a doctor I could fully trust, respect, and believe, concerning the issues at hand. I know there must be at least a handful of good doctors out there who do their best regarding treatment and symptom management, but I just don't have the energy, money, or time to continue looking. The bottom line seems to be a huge motivator in this field, and I'm broke enough as it is ... and, really, I found that everyone had a different idea of what Lyme was, how serious it could be, what effects it could have on my body, and how to treat it. The inconsistencies run far deeper than simply the disparity found between the IDSA and ILADS camps. Literally, every doctor I went to had a different answer for just about every question I had.

I have not been around Lymeland for long, just a few years. I have, however, been around long enough to see numerous others go on PICC lines, get tons of extensive and expensive testing, etc., and a year later they're still in the same boat as I. Better ... but by no means recovered.

I'm "fortunate" in that my personal manifestation of the disease gives me permanent "throat and lung infections;" when things get really bad I just hop on over to my GP, let the doc look at my throat and listen to my lungs, and then leave with a week or two "booster" of zithro. I also take cat's claw, but I'm not going to make a recommendation based purely on my anecdotal perceptions.

What keeps me going is the simple fact that I know I'm not alone in my concerns ... Lymeland has a way of silencing those who might try to raise them, and I feel it is my place to break that silence. It has not made me a popular person, but at least I can sleep at night.

[nyxie63]

LOL Cobby. No worries. More likely to send a raspberry (not the fruit kind) in your general direction.

Took a nap as directed. Didn't help with the anxiety but it burned part of the day.

Wow! I can't imagine waiting over a month for any kind of test results. Would be seriously climbing the walls. How do you do it?

I found one way to get results before dr's appts is to tell them, with my mental deficits, it'd be considerably better for me to go over the results before the appt so I can have questions prepared and won't have to bother the dr with phonecalls later. You'd be surprised how well this works.

And let us know how your appt goes. 'k? ;D

[nyxie63]

LE,
So sad but true. It's surprising to note the number of doctors I've encountered who want their patients to be nodding, obedient little minions.

I even had one doc who routinely asked "Ok, so what have you been reading now?", along with the compulsory eye roll. Of course, he hated it when I'd point things out on test results he forgot/neglected to mention. We didn't play well together.

Then again, this is the same guy who wanted me to have surgery based on a botched biopsy.

I just don't get it. Really. Doctors aren't any different or special or smarter (for that matter) than the rest of us. It doesn't mean we're incapable of learning the same (and more) information. If anything, many of us have more time on our hands to do detailed research.

[enochroot]

Nyxie - there's PLENTY of docs out there...If need be do not be afraid to move
on, take all your records, and seek out some new opinions. Several GPs I saw
were outright contemptuous at my suggestions of what was/is ailing me, and
a so-called authority expert at Columbia Presbyterian told me "maybe it is
all in your mind". He didn't appreciate me asking how it was I was able to induce
my own low grade fever for over 5 weeks....Took me a bunch of visits and $$$
to find a GP, and a few specialists, who were not convinced the one size
will fit all answer applied before I even asked the questions.

Most docs are basically hacks (not meant in a bad way) they want to rubber stamp
a bunch of open shut cases and get home in time for Seinfeld - only a minority
seek the challenge. In defense of the typical GP, they must keep
up on a firehose of new information about a broad range of medications and treatments and diseases - plus most of what
they see day in day out IS the same old same old...

[LymeEnigma]

I think by now most of you know I read Tarot many years ago ... and I was really good. The more I rationalize it these days, though, I have to question just how much of my "ability" was simply a good intuition for what was expected of each reading. I always let the cards lead me ... but they were a skeleton to a story that I probably could have applied to just about anyone. People ask for readings for a reason ... generally that has to do with love, finances, family, or work, and so that is where the cards would ultimately lead me each time....

I see a good portion of doctors, nowadays, as "Tarot card readers." They have blood tests and other diagnostic tools they can use for their basis ... but still they're just making guesses, hoping for a "hit." There are some who are "more gifted" than others ... some who will tell you what you want to hear ... and some who might actually try to solve the puzzle sitting before them in a paper sheet....

I'm glad there are people educated in the healing arts. I'm glad these continue their education through workshops and seminars. I still won't take any advice from any one of them, without first doing a little homework of my own ... because, when it all comes down to it, you never know when one may be trying to pass off an educated guess as gospel....

[cobweb2]

Nyxie- Now I know why I couldn't find your post on LNE.

Silly me.

At least I know what month it is now!

Falling asleep here at the computer and we're having a real soaking rain-which lulls me to sleep anyway.

It's the names- doesn't take much to confuse me.

And who's Perky?

[nyxie63]

LE,
I honestly admire what you and the other advocates are doing. The time, effort, and sheer willpower required to keep pushing through in the hopes of reaching even one person leaves me in awe.

Hope to get to the point where I feel comfortable doing that as well, without fear of confrontation. Not that I don't expect to get confronted, but to lose the fear. I'm such a skeerdy cat and can't handle most conflict, even on line. Really need to get over that. It's not a popularity thing. It's more insecurity-based. When confronted, I begin to doubt not only my ability to convey information but my motives for posting in the first place.

To my credit, I have no problem confronting docs in person. I've never seen them as gods, probably because of my upbringing - medical help was only saught if we were in seriously injured or ill; otherwise they were seen as leeches preying on the helpless and naive. Very similar to our family's view on lawyers.

The contempt and distrust I've acquired over the years helps too. Anger is a useful tool when harnessed correctly. For every bad doc I've seen (and there have been some doozies), there's been another layer of coating added to my colorful candy shell. ;D

Enoch,
Your story sounds a lot like a rear-Endo I saw. First appt, she not only tells me to my face that I'm a "nervous patient" but insists that all my physical ills are caused by perimenopause. After repeated requests for hormonal testing (which she declined to do), she finally asked "Why?" while looking at me as if I'd just asked her to do something obscene with a feather duster and a bag of noodles. Ummm... because you're blaming everything on perimenopause and I want to know for sure? Needless to say, that was my last visit.


Cobby,
Sorry about that. I tend to forget which name I use for what. At least I'm down to 2.

[LymeEnigma]

I appreciate the advocate support, Nyxie; there are many days when I wonder just how much longer I can do this, simply given the immense monster we're up against. I doubt I'll have the energy to keep doing this forever ... some days I really do think I'm done, for good, and then something happens to fuel the fire once more. I give myself another year or two, realistically; I'm already beyond burned out. I'm grateful, however, that there are others willing to continue on with the good fight.

You're fortunate that you have a backbone against doctors. I have issues with "authority figures" of all types; I just find myself feeling two inches tall, no matter how much I want to defend myself, and basically I just shut down (maybe some of that PTSD kicking in). I often replay the scenarios in my mind on the way home, wondering why I didn't say this or that; hindsight is 20/20, and all that....

I think my online backbone is a backlash to my agoraphobia, among other things. Out of the house I'm like a lost child, with difficulty facing even peers who know and respect me; at home or my "safe place" in the library, I feel like I can be myself. I've also had a number of terribly humbling experiences this past year ... especially as of late, when someone online makes it clear s/he doesn't like me or what I've said, I can't help but find myself utterly apathetic about it.

My candy coating comes from a different place ... and I think I finally have enough layers to qualify for an everlasting gobstopper....