learning how to deal with this

[katsusu]

I know what I am about to say will not sit well with many but hopefully it will help some that keep searching for that unreachable truth.

I just had surgery for the Parkinson's part of me. I had to travel a long way for this surgery so i stayed by the hospital for about 2 weeks. This is a hospital i have visited many times -so the doctors know me too well. They know mein neurology, neurosurgey, phsyciatry liason, and the ER.

This trip would be my worst because i brought with me all the hurt and the frustration i kept all these years from being told it is in my head and having to deal with doctors that did not understand POTS. Plus having to deal with what Parkinson;s does to your head. Plus the effects of PMS , (which always has perfect timing of hitting when I need to be sane not emotonal basket case.) Plus - because i was traveling and dealing with pain issues i was on demerol.

Before i go any future let me say the surgery was a success- but the rest of the trip was going to be doomed from the begining . I will not go into the details but i had so much hurt from the past- but if you mix the following - i was PMSing - and the demerol and the morphine fromhe surgery- and being told that part of my problem was Parkinson's Disease (PD) was causing me anxiety and depression issues. You could imagine what state I was in. All the ERdoctors had to do was look at me wrong- and I would want to run away in tears.

After my last visit my friend i went to- said that she was not going to let me near the hospital because it would get me so upset- which when i was awawy from it-i was totally happy- enjoying what I could of life.

As I read some comments, i can not help but wonder if there are others here with me that carry so many bad memories of doctors saying things or not being able to answer our questions or being able to help us- that we almost set ourselves up for failure. Does it hurt so much because all we want is understand and keep having hope and faith in our doctors- but when they question us-then our faith is broken in them, leaving us feeling all alome. Feeling like no-one understands.

Does this sound at all familar.I had to look in the mirror and confess to myself that i have been putting myself and doctors through torture - always trying to find answers. I decided i needed to tale these steps o help myself more. i had to because my doctir said that my sx were due to pschycolgocal reason from PD. I was so mad but then i realized that i have been letting all my medical issues take over my life-yes it is distracting - not pleasant- painful but is it unbearable - is it worth almost losing a marriage over because i spend all -my energy tring-to get better (when maybe i could be working out or resting so i have more energy - less frustration for my family- i hate to say it but i have been self serving when i thought i was fighting for the family. Don't get me wrong i think you should fight and research but after a point you have to count your blessing and enjoy what you can when you can instead of pushing frustration and making yourself feel worst. You just have to know where is that line. i will stilll fight but i will choice my battles better.

i need to forgive and let go of the pass..........

I need to accept that -even though there is a real problem causing my distress - that my emotions are usaully on over druve while in the hospital .

that sometimies i have to stop looking for an answewrto everything

Have some pity on ER docs- of course they are not equipped with knowledge of POTS

What i am saying is we are letting our emotions make us into an derail emotioanl train rack. To survive we need to overcome and keep fighting/and sometimes to let go.

If you see yourself at this place-i hope his helps.

Kathleen

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[EarthMother]

Congratulations on your successful Parkison's surgery. This is wonderful.

To practice loving compassion, we first must turn the light on ourselves. Give ourselves grace and forgiveness in all our actions.

Next we turn the light on all those around us and extend loving compassion to everyone -- including all those who seem to make this journey harder for us.

Gassho.

EM

[Ernie]

Hi,

I know exactly what you are talking about.

I am "allergic" to doctors and because of POTS and NCS I need to see them regularly. I am trying to become insensible to their stupidity. Not always easy!

There are only a few doctors worthy of my trust. You all know them by now!

Ernie

[Jenn202]

I agree - I feel like this a lot... I have been through so much bad with dr's that I have the tendency to bring that skepticism with me....

Thanks for posting b/c we do have to remember that Dr's are only human, and we should give them some leway if they dont understand..

.......the ones that are insulting we should learn to let go of....

Thank for this post!

[morgan617]

I could spend all my time on my body and this illness, and I did for awhile, but it drove away, not only doctors, but friends and family. When this is all you have to talk about and think about and obsess on, you miss out on a lot of good things. Any one who has read many of my posts know that I went through the "I want to know everything little aspect of every little thing. " I got all the labels, bad doctors and psych talks everyone else did. I also got rejected by EVERY big place back east I applied to. Then I realized what I was doing. What little energy I had was being used to spin my wheels.

Now I don't give a rip about how much adrenaline is in my body, or what my specific measurements are, because it wouldn't change the fact that I have this neurocardiogenic disorder. If an insecure doctor chooses not to believe me or label me, it's his problem, not mine. I know there's something wrong, as do the doctors I've been going to for 15 to 20 years. I can't do the things generally recommended, like lots of salt, or the meds, due to other medical problems. So here I am.

I see doctors now for specific things, like my hip, or my gut. And I don't waste my time looking for answers that have too many questions. This is not meant to offend anyone who's at that stage. Like I said, I was there too. But to me, it wasn't worth the money, the heartache, the disapointment and the suffering it's put the rest of my family through. It's too energy consuming to be frustrated and angry at people that are ignorant.

I am in a canyon right now, but know from years of this, that it will end and I will have a better time, then I will crash again. It's just the way it is. A magic pill would be great, but til then, I'm just hanging out and using that energy on the good things in my life. morgan

[katsusu]

Well said, and very well felt. There is a time thatyou have to realize that you know as muchor more about what is happening to your body as the people you go to.

[Guest tearose]

All was said...has been said...will be said again...they are just words...

The soothing words I tend to repeat are:

"I can not control what happens to me, I can only control how I respond"

More recently I have stared to tell my pcp:

"I am not looking for you to solve this or validate this for me...I am just reporting my symptoms, I am just giving you the facts".

good wishes to all, tearose

[Guest Julia59]

It is nice to read something to help put things in perspective for me a bit.

I'm in quite a dilemma lately, but at the same time i'm learning good lessons.

The other day a friend of mine sent me an e-mail letting me know how she honestly felt about me. She told me that I dwell too much on my health issues.

I say bravo for her for stepping up to the plate---as I need to learn how to enjoy life when my health allows instead of constantly analyzing every aspect of what is going on with my health situation.

It's a hard call because besides the POTS, I have some issues that are potentially serious with my upper spine/cranial area. You have all heard me yada on this issue....

I have two well known neurosurgeons telling me I have serious issues that need to be watched closely, and one of them is telling me to prepare for surgery. Meanwhile I have a neurologist locally whom I thought would work with one of the surgeons by watching for any neurological issues related to my upper spinal problems. Unfortunately, he is not willing to work with one surgeon in particular, and threatned to dismiss me as his patient if I continued to reference this surgeon's name. He does not agree with the diagnosis----and now want's me to see another neurosurgeon who no doubt has been well informed in advance of my "mis-diagnosed" condition. Fortunately I have two other local Docs, one is my PCP and the other is Dr. Grubb, and they both support me. I have been told that maybe another neurologist is in order, and I was given a couple of names.

Here's the thing-----------I know beyond the shadow of doubt my condition is not getting better----only worse. It's hard to talk about it anymore with anyone except my husband or my support group friends, frankly, because I really can't believe that this as being reality, and I am too mixed up to articulate the words.

Here is a link to better understand what this spinal issue is--

http://www.emedicine.com/orthoped/topic503.htm

I just e-mailed my most recent neurosurgeon lately because I have a lump in my throat which pops out more frequently when I bend over, or turn my neck. He sent me and e-mail back telling me to get yet another MRI. This time with thin cut's through C1, 2 and 3----also with open mouth views.

My point.............................this leaves me no choice to continue my journey to get the right answers, as this is one part of my body that could leave me with the most severe consequences if in fact this neurosurgeons diagnosis is correct. Personally, I only can measure this by the way I feel each day, and I know it's not normal for you neck to shift from side to side, or feel like tinly razor are cutting when extending my head back even slightly, or the constant sound of deep base humming inside my head. Besides my POTS symptoms I always have these nagging issues that are both scarey and in need of fixing.

The surgery to correct a retroflex odontoid--(aka----screwed up C1 with pannues growth putting pressure of upper spine and brain stem) is ugly-----and this my friends is what I truly can't get out of my mind. It's a rough surgery for someone without POTS...................

I will give this "third" neurosurgeon a shot at his opinion of the situation. I will not let him make me feel "nuts". I have never been more sane in my life---mixed up & frustrated maybe, but this has forced me to have my faculties. If I did not have my faculities this would have licked my long ago.

Now I have to gather all my medical files, and all the MRI's, C-scans and so on-----and take yet another trip, thankfully only 45 minutes away this time. If this guy is dismissive, I will simply stand up to him and let him know the facts. He can deal with it---or i'll move on----no harm no foul, just another one as dust in the wind.

Recently, this is my attitude now----not to take is so personally. It's just ignorance and ego-----A BAD MIX.

You are all a strong bunch, and you can hold your heads high, as you all know the facts because you feel them everyday.

Unfortunately, I still have to deal with the business at hand, but thanks to all you you, I can do it with a newer perspective.

Julie :0)