When is it time to quit???
 

I have a question for all my SSS friends, and even those who don't think of me as a friend. :wink: I've been suffering from an undiagnosed condition for over five years now, and in that time I've seen 27 doctors and specialists, been to five hospitals, and been subjected to numerous tests, some of which were very, very unpleasant.

I've become so sick of all the doctors that a month ago I finally decided I just couldn't do it anymore. I talked to my PC, and I informed him that I wanted to take more charge of my medical decisions, and I wasn't going to go to every doctor he could think of just on a hope and a prayer. It's not that I'm giving up really, but after all this time I think it would be more helpful for me to concentrate on learning to live with my condition intead of constantly aggravating it with new doctors. He didn't really disagree with me, as long as I would agree to go see one more specialist whose practice is 120 miles away. After that he said he would be willing to work with me more to manage my symptoms, and let me decide when I needed to see someone new.

Now the problem I have is that certain members of my family think I'm making an awful mistake. One even suggested that if I don't need all the doctors, then I'm probably not as ill as I "pretend" to be. So my question to all of you is this: Do you think there comes a time when it's better to work with what you've got than keep chasing a shadow with a slim chance at catching it? I've felt better since my decision, like a big weight has been removed from my shoulders, but I don't want to do the wrong thing just because it's easier for me. Any comments and suggestions would be hugely appreciated here.

Thank you all for taking the time to consider this...:hug:

Idealist

If you quit or take a break from drs and tests even if just for a while- I don't see anything wrong with that.

I know I really enjoyed not having to go to drs and PTs week after week, month after month when my wc claim was settled and closed.
It gets very draining esp when you don't really get any answers.

Go with your gut feeling and tell the family you're just taking a break for awhile. Then you decide how long that break will last:)

dear Idealist
I am so sorry that the health issues are still unresolved but yes, I would agree that it may be time to take a break from striving to find the answer for a while and see if maybe it doesnt yet come, with an avenue for healing ........ this doesnt mean you will never see another doctor, nor that you shouldnt pursue the specialist your doc is recommending...just that I can fully understand where you are coming from on this, and agree.

as to those who are suggesting this means your illness is not as severe :( I pray that God would just give you the ability to move forward despite such an unkind and insensitive response. I have long since learned I cant live my life based on the opinion of anyone other than God...as long as I know I am walking in honesty with Him, that is truly all that matters to me.

Illness comes at us from many sources, Idealist and so does healing. And sometimes we just need to be able to breathe and stop a cycle of searching in vain for answers, and listen quietly. God directed me to real solutions for my son in just such a way, so I feel deep empathy and understanding for you on this.:hug:

I am praying for you
May His peace and comfort be with you, and His guidance and direction in ALL things be clear to you

Follow His Voice above all others and you will be on the right path.

Cheri

Idealist ~ I'll be praying for you and wishing you the best too.

Idealist
 

Put it for now in your hands if it's not somethink like bloodpressure med.
hearts meds. give it a break..When my Mom was beginning to feel like
a Guinea Pig,my Cousin sent her a letter and told her to put it in the hands of
God,for her to rest ,and a angle was at her side she did..Then have the streghth to go on to one more Dr..So I will pass this on to you,my Mom carried 2 letters the last one from her Mom,and this one from my much younger cousin...When my Uncle lost the feeling in his legs because of a
surcery,I sent it to him,when he got tired of rehab..He resting and now feels pain in his legs,that's good he's feeling movement in his legs.

So forget the others trust your heart,and put it in the hands of Got for awhile..I have decided to do this,and being a nurse for 25 yrs. relatives mean well (some times) but can say hurtful ,cruel mean things. Now if they say
I would give anything to help you get throgh your illness and I promise
to stand by until they do.thease are the one's to care about,tell the others
In a nice way,because that's you ,if you need help you will not listen to
the way they talk to you..Because it makes you feel worse...Good luck Dear,
and Mirracles do happen,so don't give up..Your aready speaking up and we have all I bet have felt that somethimes..I have been going through this.hugs Sue

Idealist,

There are many times in which we just want to go outside and yell our head off at the top of our voices. Believe me I have done this through the many years. For years all the doctors never did try any thing on me and just let me suffer with my epilepsy. Lucky I came across a doctor who has let me make all the decisions and I have improved a great deal.

As for family members it is your life and your decision to make not theirs. In the long run, your true love ones will stand along beside you. There many here that are care a great deal for each and everyone. You are in all our prayers and thoughts.

:grouphug:

This is a time maybe you should stand back and look at what you have been going through. So stand back and take a deep breath and weigh your situation.

As Chemar said, put it God's hands and he will lead you the right way.

Christian love,

Darlene:hug:

:hug:

it's YOUR body and YOUR life.

take a breather. going to all these dr's and explaining the same thing over and over again is draining. that doesn't help you physically. the other emotional stresses don't either.

it's not like you said forever. you can decide at anytime that you want to start the dr rounds again.

i am proud of you buddy. your last statement says a lot to me. a big weight has been removed from your shoulders.

time to heal from the inside.

:hug:

and ditto what cheri said. :)

Thanks all you guys. I knew you would give me plenty to think about. And it's good to know that people who really understand are able to agree with me. And yes, Cheri, I think you are right, too. There are other avevues I've been pursuing which I think might be even better. Thanks again everyone, and Merry Christmas to all of you.

Do you think there comes a time when it's better to work with what you've got than keep chasing a shadow with a slim chance at catching it?

I think I will have to answer this in a few different ways and I hope this is not confusing.

First of all, I think you have every right and very well should be an integral part of your treatment plan. If you are exhausted going from doctor to doctor, this does not seem like a good plan to me.

Your doctor should be willing to scale back to only the essential doctors and tests. You might tell him that you would like to be informed of any doctors he hears about that are doing new research that relates to symptoms you are experiencing or likely dxs.

In addition, it would be wise of you to read up on anything you can yourself on these things. This way, you can ask your doctor yourself if he has heard of certain things. If he is good, when you leave, he will ask his colleagues or research himself information that he is unsure of.

Another approach would be simply to tell the doctor that you would like to take a "breather" from visiting so many doctors and/or taking many tests. Perhaps for a period of time...3 months, six months, etc. You have every right to feel like you need a break. Again, this is one option.

Even while recuperating from illness, during periods of improvement...patients can and often do their own research. And during down times, they might get the extra rest they need (this includes emotional and spiritual rest...not just physical) they need to recuperate.

A few important things that are important: One needs to be aware of the body's needs; to be willing to speak up about it; and to continually move forward...even if it is at a different pace as someone else.

Thanks for this and I think you did a wonderful job,Thanks to I. we are
all learning... Hugs Sue

stooping is oe thing, quitting is another........
 

You sound to me like you aren't actually wanting to "quit" anything at all
Alls you are wanting to do is "stop" seeing doctors and take your personal medical matters more under your own control....

If you want to stop, that is your business, it might be that you are better off emotionally and, I guess "spiritually", psychologically looking to and for yourself for the answers that so far evade you....Maybe not...Only you will ever know...

But, you must be aware and prepared to discover that maybe what is wrong with you forever remains a mystery to you and all others too. And that it's really nobody's fault that what is wrong with you and how to effectively treat "it" can not be resolved. Sometime that's just the way it goes.......sometimes you just gotta go with the flow and ride with the tide......

Read, read some more, and then get serious about reading some more....
Start a collection of everything neuro related that you can find....
Ask lots of questions, and then read and collect some more neuro stuff.......

Get a dog, and then walk and talk to the dog, along with whatever version of the great creator you choose to subscribe to, every day.

See a good shrink.....Finding one might require an effort, but they're out there..... Sometimes learning how to live with somethings offers more promise than alleviating "it" might entail........

If you just want to stop seeing doctors....
Nothing at all wrong with that.....
That sounds almost just like me....

You might want to stop here.......Especially if you think that little except sweetness and honey might follow, they don't.......I think the above is pretty reasonable and I try to approach all things in life in a similar way.....I did say "try"....... I have a few other thoughts that to me anyway, the above doesn't interfere with what is the below either.....
Be forewarned.....I apparently tend to look at most things in life a tad bit differently than most folks do.......And am absolutely comfortable with what I think, and with what anyone else might happen to think about whatever it is I might happen think about something.
Nothing really very bad at all below though....
-------------------------------------------------------------

>>> " I talked to my PC, and I informed him that I wanted to take more charge of my medical decisions, and I wasn't going to go to every doctor he could think of just on a hope and a prayer. It's not that I'm giving up really, but after all this time I think it would be more helpful for me to concentrate on learning to live with my condition intead of constantly aggravating it with new doctors. He didn't really disagree with me, as long as I would agree to go see one more specialist whose practice is 120 miles away. After that he said he would be willing to work with me more to manage my symptoms, and let me decide when I needed to see someone new." <<<
Bad news, but that, to my way of thinking (subject to being way off base and skewed far from what most might consider to be realistic and reasonable), is that that is a response that is exactly what is called: >>>disagreeing<<< with you.... Tell him if he will eschew any further referral/etc fees and refund all referral/etc fees on/with/from/due-to YOU that he has received in the past five years you'll go, otherwise tell him "NO!"
Let's see he doesn't disagree with you, but only IF you: >>> "agree to go see one more specialist whose practice is 120 miles away" <<<
Were I you I would tell that physician to go and (put bad thought here) and find me another PCP immediately.

Whose life is it you are living anyway? Yours or his/theirs?
How on earth does anybody know what is really happening to you except for you.....
The physicians really doubt you too don't they? You fail to fit into their pharmaceutical cure all fantasy land and so they figure you are a prime candidate for endless rounds of more and more useless testing, even tests already done several times, and that benefit none or nothing save their own personal financial situation.

I took this evoked response test once that involved wiring me up from foot to head and shocking me with copious quantities of rather large zaps of zero amp hi-voltage, like a stun gun attack. I told the neuro's that for several days I felt better than at any time since waking up late 05/02 and that I wanted them to do it again, and if it had the same result the second time, I wanted a good zapping on a somewhat regular basis. They, all save one neuro (and him I see in February!) say that there is no positive anything possible from such a "treatment" regime.
"How do you know" I have asked them all, and NONE of them have anything even close to a reasonably sound medical or scientific answer to offer, nothing even remotely close. They all admittedly have absolutely no idea about why or how anything does/doesn't/will/won't with me, and yet they are absolutely certain that the "shock treatment" had no effect at all on me, with nothing except their all knowing wisdom and experience to guide them.
I have told them all that if I say that I sustained a rather dramatic response and heightened sense of awareness and ability then THAT IS EXACTLY WHAT HAPPENED TO ME!. It is me that had the experience and me that reports the results..NOT THEM!!!!!
And therefore I AM RIGHT and THEY ARE WRONG!

And for your new "PC", I would suggest that you find yourself a 40 something woman physician that has had several kids (they make the best and most "intuitive" physicians around IMHO) and leave the bargain making doctor alone for good.

Hi Idealist
Man I'm totally surprised ya actually found a doc that ISN'T tellin' ya it's all in your head & is willing to keep working with you & getting you more tests! It's usually quite the opposite! So many docs are ready to jump to the conclusion that if a few tests showed nothing, it's mental/emotional, whatever & wanna hurry up & getcha on meds! Lol! Been there! Lol! They found out differently tho! I know the round after round of docs, tests, trips, crappola gets old fast, and I sure don't see any harm in a respite from it, especially from the standpoint of your much needed stress release. However, since your doc see's reason to continue on the quest and you've already gone this far, I imagine you've been able to rule out a lot of things & might be fairly close to getting answers, so I hope you don't quit. An epiphany may be just around the corner! I suggest praying for answers & guidance for you & your doctors. It was only thru God's intervention that I was at long last able to receive disability which I sorely needed. God walked me thru the entire process and it was awesome because my doctors were unaware of my decision to go forth & apply at that point & they were saying & doing things which made it apparent to me that they somehow knew...and were helping me. I always call the process I went thru "connecting the dots" because that's what it was like, I prayed to God for guidance and I followed His lead. There were times I didn't have enough faith and God pushed me to do what I had to do, even tho I was rebelling at it! Pray for help, God hears our prayers & will help you!
Good luck!!!!
Hugs!
Critter
P.S. Don't resign yourself to learning to live with whatever ails you if you don't have to!!!!