Oh what a day - advice?

[Jackie]

I really don't feel like sharing this, but I have nobody to talk to today and thought if anybody would understand it would be somebody here.

I have spoken before about how I ended up seeing a psychiatrist because of medication side effects from Ativan and Lexapro (given by ER and Dr. Grubb respectively) and was left in a bad condition with nobody to turn to for help in alleviating the symptoms and sensations these medications caused.

I have no idea why I go to this jerk, the psych guy. I'm sorry for my bluntness but that is the nicest thing I can say for this arrogant excuse of a man. When I was matched up with him, not by my choosing but through a hospital program, I immediately found him abrasive, but I was in a state and needed help so I took the help where I could find it since my family doctor left me out in the cold without any advice and so did Dr. Grubb. My basic problem was agitation and trembling, tremors and extreme anxiety like I have never known and even though I had the POTS diagnosis I couldn't deal with it because the meds I'd been given so far had me a nervous wreck.

This guy was supposed to be working WITH my doctors in my care. I found out a couple months ago by asking him if he ever talked to them and he said bluntly no he didn't need to, that it was all anxiety and he was treating me and that was that.

I've never been to a psychiatrist before and have no idea how it is supposed to go but I can't believe it should be like this. The man is very abrasive and borders closely on condescending. He never entertains questions in any form...abruptly cutting you off and dismissing it. Any single thing I've ever asked is met with "it is anxiety". You cannot literally ask him anything especially medical. I get about 5 minutes and basically am at a loss as to what to ever say to the man especially after today. I have had about 3-4 appointments with him since the fall and it is always the same...5 minutes..how are you doing...it is all anxiety...what time of day is good for your next appointment and here is a refill rx.

The only reason I have continued to see him is I suppose that he in fact did pull me out of that state I was in by giving me Xanax and it seems to work for me. I try to explain to him though that my physical body, my physical nervous system feels calmed down, but the physical symptoms are still there (low blood pressure, etc.). Today, I took printouts about dysautonomia with me and finally was prepared to share them with him hoping he would at least read it. I think I guess what I want is a team approach to my problems. It is too difficult to have specialists on one side saying POTS and then this guy in a box all by himself saying it is all anxiety. He absolutely refused to read the papers, refused a copy, and said bluntly "what is the point". I tried to explain that it is my understanding that I have this diagnosis of POTS and that it doesn't necessarily exclude anxiety but that anxiety is one symptom part of the complex range of symptoms that have a physical cause. He dismissed it entirely and said "it is all anxiety". I said "so anxiety can cause orthostatic hypotension" and he said "of course...it can do all kinds of things". I basically said well I thought maybe if you read this stuff and was enlightened you might in all your professional medication expertise maybe have insight into a medication regimen that might be even more beneficial down the line (trying to put it to him nicely by stroking that old ego) but he said basically "go to your appointment next month and let them see if they can come up with anything that can calm your nerves down more and then we can decrease the Xanax..that is the only thing I can see here". I said to him...I don't need my nerves calmed down more...if I was any calmer I'd be asleep. He just dismissed me by scheduling my appointment and handing me a prescription refill. I said "Oh I still have 1 refill left but okay yes this way I will certainly have enough okay" and took the rx and he said as he was getting up and walking away, well I wouldn't want you to run out and "panic" which the more i think about this really upsets me and I shot back...Oh, I don't think I'd panic...I'd call you but I wouldn't panic...have a nice weekend" and I left.

I'm totally sick of being torn back and forth between people's opinions. Who knows what to believe sometimes. I am trying so hard to accept this thing called POTS and adjust and then this guy knocks me out of the water every single time by saying nonsense it is all anxiety.

The last appointment I had with him I cried all the way home. Today all I could do was laugh rather than cry because I totally feel he is ridiculous, insensitive, arrogant, abrasive, and after my appointment next month with a new POTS doctor I'm happy to say will be "fired" by me. There was a time when I first saw him that I questioned taking the Xanax and told him I didnt' want to go from one benzo. to another and he basically threatened me that either I take it or he will dismiss me as a patient. I had nowhere else to turn. Well, I'm not that sick and weak anymore and I'm not about to take abuse off somebody I'm paying to work for me. That is the only thing that has made me feel better at all today and that is that I'm getting rid of this guy because I don't think he is of any use to me. Why in the world should I go and pay somebody 25.00 to shoot me down and ignore my questions...not a team player at all and not interested in stepping outside the box and even looking at a piece of paper or entertaining the idea that this condition might be valid. If it is all anxiety, why the heck do I still have POTS symptoms on anxiety meds? Perhaps he thinks more and more anxiety medicine is the answer...yea, I'd be sleeping all day..what a cure.

So, my husband calls from work and asks how the appointment went. I shared how it went. The usual. He says well it isn't worth being upset about. I said that is correct but it is an example of what I was talking to him about last night...the frustration of being in a situation where you don't know what to believe half the time and feeling that others do not believe it is real (including my husband who professes he does believe it but still has the attitude stop whining and saying it isn't the worst thing in the world and various other comments). He says about this psych guy, something like "well you expected nothing from him and he met your expectations" or something to that effect so I asked what he meant by THAT and he starts getting all hostile and saying to me "will you stop being so overrective and looking for hidden meanings in things". I'm not looking for a hidden meaning in anything I explained, but simply "the" meaning. His response was nothing. Now how logical is that?! Certainly it is normal to say things all the time that mean nothing right?

Sometimes I feel like I'm surrounded by a pit of vipors...like people are making me feel crazy when they are the ones who don't make sense. I admire people on this board who truly have the full support of their husbands/wives/significant others. For me, I just don't know. I love my husband and I believe he loves me but he just doesn't get it and I need something from him that I'm not getting and I can't even put it into words or define what it is...could it be validation and support? It certainly isn't pity...maybe just understanding I don't know.

I'm just so sick of all of this and needed to vent. Thanks for listening.

[Sue]

Jackie

I am so sorry you are having a crap day. I know when I have an apt. with any of my doctors I am looking for some kind of encouragement, light at the end of the tunnel. This guy is neither supporting you or helping you. I would have more anxiety just by thinking about an appointment like that. You need to ditch the jerk!!! He doesn't even deserve the diploma hanging on his office wall. You know all doctors take an oath, I wonder if half of them really listen to what they are saying??

I hope the rest of your day is better. We need our own private island!! That way we could be there to support each other, and a couple of cabana boys wouldn't hurt either

Sue

[Jersey Girl]

What Outrageous Behavior on the part of the psychiatrist. I would file a complaint about him to your state board of medical examiners or the hospital patient advocacy dept. He has no business treating you that way. It really makes me angry to hear about that type of behavior on the part of someone we have entrusted to help us. I was treated that poorly as well before I was diagnosed with POTS and it still hurts. I usually post on NDRF website but this site is more for just POTS people I assume. I feel terrible for you and just hope the rest of your day improves.

[Jackie]

Encouragment...light at the end of the tunnel...hmmm haven't found a doctor yet and I'm evidently not married to a man that can fill the gap either.

Island paradise...cabana boys...hmmmm...that does sound good! When does the boat leave?

Seriously though, thanks for being there for me.

[Sue]

Get ready Jackie I'm on my way

[MightyMouse]

All I can say is that I, and many on this board, have been where you are at this moment. It's taken me many years to no longer take such things personally...and sometimes I still do. However, one thing I've done in the past few years is immediately ditch any doctor or other professional who is not a team player, or who has lost all sense of humility at the completity of the human body such that he/she thinks he/she knows it all and needs no help from you or others in figuring out the problem.

My best advice: Move onward, and leave the doc behind where he belongs.

Nina

[Merrill]

Jackie--I'm so sorry about that truly horrifying encounter with what is undoubtedly a quack in a lab coat. There's no excuse for the way he treated you and dismissed your questions and concerns. I wonder if the majority of this guy's patients come in to his office a couple times a year to get refills for their maintenance meds; he certainly doesn't sound capable of developing lasting relationships with his patients! Some psychiatrists--especially those who don't have ongoing week-to-week analysis appointments with their patients--want to see you in their office just to check in. They don't do any real therapy.

I truly hope you never see him again. There is hope out there... I know, for example, that some of my therapist's patients are on meds, but she's not an MD/psychiatrist and cannot prescribe them herself. She does work in close partnership with a psychiatrist who her patients see from time to time; together, they treat the WHOLE person. Perhaps you'd feel more comfortable talking with a licensed clinical social worker or another kind of therapist (I'm blanking now on the degrees she holds).

Have you read that book that's available for purchase on the NDRF site--and may, in fact, be downloadable in PDF format? I printed out a bunch of page from it; this part really hit home for me and will for you too. "Dysautonomias are, possibly more than any other ailments, mind-body disorders. ... Distinctions between the "body" and the "mind," the physical and the mental, problems imposed on the individual and those in the mind of the individual, are unhelpful in trying to understand dysautonomias. ... The autonomic nervous system operates at the border of the mind and body." The section is really worth a read--it's terrific.

There's also a section in that book you'd be interested in about men as caregivers. I wish I could respond in some way to the piece you wrote about the argument/frustrating conversation you had with your husband. But let me say something more generally--in my own experience (and in that of my friends as well), some kinds of scraps between people are avoidable. Sometimes when people get upset or have a problem, they just want to vent and rant and rave. They want to be HEARD and understood. They're not necessarily looking for someone to solve the problem. They just want to talk and have someone be empathic on the other side. Some people don't get that at all--they want to fix the problem, mend what's broken, say something quick that will make it all better. But that can make the problem worse...

So when I want to rant or share my experience, I'll sometimes tell my husband--don't solve this for me--just listen. I want you to understand what's going on. All I need at that point is some affirmation and comfort. It's not always easy to identify what you want and need--and then ask for it. It takes some work from both sides. But where there's love there's a way. Maybe the two of you would benefit from going together to speak to a counsellor? You'd be amazed what a few good appointments can accomplish!

(PS I love that your husband called from work to find out how your appointment went. That says a lot, I think.)

All the best,

m

[Michelle Sawicki]

A psychiatrist is supposed to help you feel better, not worse. Hope you can find someone who really does want to see you at your best and is willing to listen and work with you.

Best wishes,

Michelle

[Jackie]

Merrill - Thanks for posting. I do think on the surface yes that the positive point is that he called from work to ask how my appointment went. The thing is, when I tell him how terrible it was, to me anyway, it is almost like he turns it around on me...like in saying "I expected him to do nothing so he met my expectations" meaning the dr. and big deal. He has this habit I'm finding of doing this all the time. He will ask me how I feel so he can hear how bad I feel and then find some way to say something critical. I hate to say it or admit it to myself in a way but I guess it is almost to the point where I think he is honestly feeding on my weakness or something...like somehow hearing how bad I feel or how wrong something is just makes him feel that much stronger and better about himself. Not a good attribute and something that has revealed itself over time...he certainly didn't act like that when I met him!

As for the theory of men and women being different and thinking differently I totally agree. I have pondered the theory of how men just get frustrated because they want to fix things, etc. and that could be true in many instances with men but when I apply it to the way my husband reacts it just doesn't fit. If he was worried about "fixing" something, which I'm not asking him to do, he would I think say something remotely similar to reveal that emotion. Not turn it around on me in a negative way.

The bottom line is that my husband is working full time, going to school full time, is in the national guard, and then if he has a day off he plans it around traveling to another part of our state to see his children. He has nothing left over. I feel like I should be there for him and do all I can to support him but the plain fact is that I keep the house clean, balance the checkbook, handle all the finances, laundry, errands, taxes, phone calls, anything and everything PLUS work from home and I don't have anything more to give him. I have begged him to slow his schedule down and he disregards my feelings and goes about it the way he wants to...he says for our future good...he will have a degree and be a nurse and we will have more money. Well, all I have to say is I hope our marriage is still intact when he gets there because he is sacrificing what is most important in my eyes and that is us.

You are totally correct about one thing...and I realized it myself this afternoon...if all he would have said was "yea you don't need that...or that was wrong...or well we can talk about it later but I don't think you need to keep seeing him" or anything remotely supportive it would have been different. I'm actually sick and tired of being sick and tired and being kicked while I'm down to boot. The bottom line is that a lot of men want women to be just like men, work like a man (and believe me until I got sick I always brought in more money than he did) but yet be like their mother and make sure their clothes are clean and house is clean, etc. I'm glad all his needs are getting met...mine are not and that is the truth I'm having to come to grips with. It is as simple as remotely relating and validating my emotions. That is all it would take. That is all I want. Either this man is going to treat me differently or there are going to be big changes. I realize there are worse and horrible marriages out there with abuse and alcoholics, etc. and I thank God my husband is an upstanding hardworking honest and well I've always viewed him as a kind person...I just think lately he never saves any kindness for me...I don't know where it is going. He's critical and negative, etc. Of course he is probably reacting to stress but it doesn't take but a second to say I understand. There is no excuse for it period in my opinion.

Now enough blabbing...I feel ridiculous venting like this but I tell you this illness has effected more than just my health...it has effected my entire life, my job, my self-esteem, my abilities, my priorities, our finances, my marriage...everything. I feel like I need to be superwoman and keep my mouth shut, accept it, push on and earn a paycheck and be available when he has time to pencil me into his schedule, perky, healthy, and always feeling well and never having a problem or a bad day...that just isn't reality right now. My cape is at the cleaners and I don't even know if I want to put it back on.

[Jackie]

Thank you MightyMouse, Michelle, Jersey Girl, Sue for the support and understanding. I realize fully my answer is to dump the doctor. It was upsetting and frustrating, but I've been there before with medical personnel as we were just discussing yesterday so I will survive and I will get over it. I don't know why I never cease to be amazed though...how many times do you have to subject yourself to it before you realize. The bigger thing though is if this is the standard we hold strangers to, should we hold are husbands/wifes/friends/relatives to any less standard? I can fire my doctor, but what do I do with my husband? I know I'm just emotional right now and it will pass and I'm sure I will talk it out to some degree with my husband and he will do the usual...retract what he said, apologize, or try to say that isn't what he meant at all, or when all else fails deny it and say I didn't hear what he said right...some crazy thing will be the explanation until the next time and the next time after that and the same thing..I've been down this road a lot with him lately. Counseling would probably be wonderful but wouldn't fit into his busy schedule. It is just a circle of a mess...he's working hard because I can't work as much, he's going to school to make a better life for us, etc., but yet there just below the surface I feel a little bit of resentment just beneath the surface that he is holding back that I'm not pulling down my half of the deal these days financially and spend too much time worrying about my health. Oh he will say the opposite....do what you need to do....pace yourself...take it easy...but his actions speak louder than words. The bottom line is that he is the kind of person who views illness as weakness and would work if he was hemorrhaging blood and he takes pride in that. Good for him. Stop holding me that standard though because I can't do it anymore.

See what 1 bad doctor's appointment can do...cause your whole day to spin out and doubt everything darn thing on the planet...not only yourself and your sanity but your own marriage and future. I'll recover...I always do...the rest time will tell. I am going to lie down and regroup because then I have to run an errand, get something together for dinner, and work still today...house cleaning be darned today...I just don't have the energy for anything else.

P.S. And I wanted to note that this is the first doctor absolutely who ever said that anxiety causes orthostatic hypotension...news to me. I think he's a quack.

[Jackie]

and merrill I'm defin. going to check out that book. Hugs to all and thanks so much!

[MightyMouse]

Do download the book...it's free and very helpful! Nina

[Jersey Girl]

Everything you feel is totally valid. Possibly there is a support group of persons with chronic illness in your community you could meet with, because some of these issues are the same for any family with a member who has a chronic illness. You are not alone and we all need each other. Hang in there.

[Guest tearose]

Jackie, I would love to hear your "you're fired" speech to this excuse of a doctor! I am so frustrated that he put you through weeks of this kind of "care". It is obvious that he was not ever interested in really understanding what the health challenges are that made you need to seek support. At the very least I hope you realize that your initial instincts were correct and you just won't ever let another doctor get away with this!!! The fact that you are ready to tell him to get lost makes me feel that you also must be getting stronger. Are you?

As for husbands...I hear you. I have a very complete, happy and fulfilling marriage but also an independent type of relationship with my husband. I have learned over the years of illness that it is sometimes not a good idea to look to my husband to listen. Sometimes he just does not have the skill and ability to actively listen and process in the nurturing way I need and want. I also think he could not handle the thought of me being seriously ill, or where that illness might lead. I had to learn to take my "needs" to my dear girlfriend or two and a dear great aunt. I think my husband has many other redeeming qualities and as long as he meets those other needs and wants I can remain satisfied and happily married. Can you reach to someone else for some of the listening and supporting and still remain happily married? Try to think back to the original reason you chose him and hopefully those reasons will renew your faith in his good qualities and your love for each other. I'm glad you shared your day with us and I hope tomorrow the sun shines in your face and heart!

(((((hugs))))) tearose

[Jackie]

Thank you tearose. As for my "you're fired" speech, boy it was fun day dreaming today about the piece of my mind I would give him (as if I can spare a piece!) but in the end I actually don't think he would listen if it were in person, read it if it were in writing, or ultimately care and I'm certain he would write it all off to psychotic rantings.

You are absolutely correct about the strength issue. As bad as I still feel, I've come a long way. Though I've ranted so today you would think I'm spiritually dead...I am actually feeling that I'm coming back from a literally broken spirit through my ordeal to a healing on the mend fighting spirit through the strength of my faith not in doctors and not in medicine, but in God. He is well able to keep that which we commit to him so I just keep meditating on that. Today, well, I just went off. Sometimes it gets to be too much and I forget to turn it over to him instead of letting it drag me down. I say again like I said before "that which doesn't kill you makes you stronger" and I'm finding that to be true. In the beginning I feared so greatly this doctor would turn me away because I didn't know what else to do...well the tables have turned and I'm quite pleased that I don't feel scared or worried at all at the thought of firing him and it feels good to be a position of strength and not weakness and at somebody's mercy. Jack is back!

If my husband thinks I'm weak and wishes I was stronger, he better watch out for what he wishes for. I might surprise him! Are you sure I can't trade up to a better model though? But seriously though, in my heart I don't want a broken marriage and he does have good attributes and I am trying to put my mind on those right now instead of what is lacking. I do realize nobody is perfect and I certainly am not and yes I have sisters I share this with and they help. Women are more compassionate by nature I think...love to talk and good listeners too I think. I think the way you handle your marriage is envious. I should model it I suppose and stop seeking after what may never come from him. The thing is I guess, when I was younger (I was a single parent until the age of 28) I never thought I'd ever get married. I had no faith in men or trust at all due to various experiences. When I met my husband, the whole thing changed. I was strong and independent when I met him, but slowly having somebody there to actually share the load with I felt I changed and wasn't this die hard strong old person anymore and that I didn't have to be. Not that he would take care of me or anything like that, but my best friend and somebody to share my life with...and I let my guard down, broke down the walls of distrust and gave into love. Now I guess I just feel so vulnerable to what he thinks (whereas before I didn't have to worry about what anybody thought...there was only me) that I fear it may not be healthy. Is it normal to need approval or understanding from your husband? I keep thinking of this scene in the movie Terms of Endearment when Emma tells her mother that she is pregnant and her mother isn't happy about becoming a grandmother...and Emma says "If you aren't happy for me...I just don't know what I'll do..you have to be happy for me"...well, that is how I feel I guess, except "you have to believe me right? If you don't believe me I just don't know what I'll do (i.e. if you don't...my best friend and partner..then who will).

Anyhoo, enough of that. You are all a treasure and you certainly truly helped me today. Sometimes I need a reality check...that is why I come here. Reality check, reality check check.

I will be better tomorrow I know it. I just need to simmer down.

[denabob]

I'm really sorry about your day and I can fully understand your point of view!!I dont know what to say about your husband because I dont know him but I do know that men have a hard time dealing with things that they cant fix! They think that if you are "blowing off steam" that you expect them to do something about it. I turn to my best girl-friend and she is honest enough to let me vent without letting me whine and there is a fine line! She tells me when I start feeling "sorry for myself" that she'll ground me and we talk at least three times a day if I'm grounded she wont answer the phone

(From my friend Lisa )- This is my stress management technique recommended in all the latest physcological texts : The funny thing is that it really works 1. picture yourself near a stream. 2. birds are softly chirping in the cool mountain air. 3. no-one but you knows your secret place. 4. you are in total seclussion from the hectic place called the world! 5.The soothing sound of a gentle waterfall fills the air with a cascade of serenity. 6. the water is crystal clear 7. you can easily make out the face of the person you are holding under water

See.......................you are smiling already!!

See why I turn to her? she's a nut!!

I hope you feel better soon!!

Deanna

[Guest tearose]

Hi again sweet one, sit down and think...go into those dark corners of your heart, only you know what it really is that you want from your husband. Only you know if you really are happy and can be with him for the rest of your life. It can be as simple as a difficult day with a lousy doctor that makes us re evaluate our lives and put our lives back on track. Maybe, just maybe, you feel bad that you can't be as strong as hubby wishes, or maybe, just maybe he really is scared that he can't fix you, the love of his life! What is beautiful is that you sit there right now, trying to make it all better. And for that reason alone, it will be. Whatever you decide.

If this helps.... I learned to recognize there is a difference between what we need and what we want. When it looks like my husband is unable to handle some of my needs, maybe because he is very burdened with his work for example, I try to save the really important wants for the husband and take whatever needs I have to friends. This way, I avoid feeling like an added burden (usually). Another thing about needs and wants... Anyone can take care of our needs but we choose who we want to be with. We must want to be together with our soul mate, not need to be. Do you see what I mean?

Yes, I want my husband to accept me on some level or I couldn't/woildn't be here, however, I don't need his approval because I am a complete person without him. You have to remind yourself too that you are beautiful and complete right now in this moment. Just a real life note....the other night, after I was told that now I need a brain MRI, I wanted to hear my husband say "how have you managed all this so well?" I WANTED him to say it!! So, I took him by the hand and sat him down next to me on the sofa and told him I was scared and I wanted him to say "how have you managed all this so well?" Now these weren't the lines from any movie, but my husband needed the words and I needed to hear it. He repeated those words and we hugged and I cried a little. I knew he was doing his best and that was good enough. It is reality. This is life with my guy! Relationships are about growth and reality. I hope that you collect a hug from your guy tonight! Warmly, tearose

[lalalisa]

Jackie,

It sounds like you've been through a lot lately! I actually experienced really extreme constant anxiety and a few panic attacks for a while. My Dr. put me on Paxil CR which has been great! I don't tolerate meds well but the slow release helps so much for me! I am so sorry that you have been through so much! I hope that you find a Dr. who understands!

Hang in here!

Lisa

p.s. CAN SOMEONE PLEASE TELL ME HOW TO FIND THE ARTICLE THAT WAS PREVIOUSLY MENTIONED ABOUT THE MENTAL/PHYSICAL RELATIONSHIP WITH POTS???

[Jackie]

Between Denabob and tearose I don't know whether to laugh or cry. I will post more tomorrow...I have some thoughts about the posts I want to express especially to Tearose in response...my heart is touched so deeply...I'm just emotionally exhausted and finally got my work done. Tearose are you older? No offense intended please it is just that you are so wise and soothing with your words. It is like salve on my soul. It's like talking to Mrs. Doubtfire from that one movie.

P.S. Thanks Lisa also...I think I'm on my way to a good doc...hoping anyway, next month. Afraid of Paxil, but we will see.....

[EarthMother]

Hugs to you dear. I know how you feel. We want them to understand, or at least TRY to understand and on days like today it doesn't feel like that will every happen on the home or medical frontier.

Lot's of good advice here ... I love the sage words about finding a friend to talk to. Husbands are wonderful for so many things ... but no matter how hard we try we can't make them into all the wonderful things rolled up into one. That's why we have each other here. It's so hard not to take things personally -- but sometimes the truth is just too painful for them to hold. We are their lifeline, even though it doesn't always seem that way. But when we are in pain -- they want the pain to stop .... so they tell us not to worry about it, because in reality the reality of it all is too much for them to bear.

If you want Xanax, your HMO doctor can prescribe it just as well as any "psychiatrist". Oh and they love it when you use their name in "quotes". So the next time you are with Dr. Strangelove, just say ... 'Listen "Doctor" ______, if this is the best you have to offer then I'll take what is behind door #2."

We need a live chat room so we can come together at the end of day, especially a day like today. I've been trying to figure out how to put one up on my web site, but I can't quiet get the CGI's to work. But I'll keep trying. Maybe we could have a phone tree. We can exchange phone numbers off line and know we have voices to talk with out there when the flood waters start to rise.

Good thoughts,

EM

[Merrill]

Lalalisa--you wrote p.s. CAN SOMEONE PLEASE TELL ME HOW TO FIND THE ARTICLE THAT WAS PREVIOUSLY MENTIONED ABOUT THE MENTAL/PHYSICAL RELATIONSHIP WITH POTS???

I think you're asking about something I mentioned on an earlier post in this string (as opposed to something you read elsewhere, yes?) Well -- I can tell you! Go to the NDRF Web site (National Dysautonomia Research Foundation at www.ndrf.com) and click on the References link in the side margin. The "NDRF Patient Handbook" is the first book listed on that page; slide down and click on the PDF Format link (unless you want to order the hard copy). The part you ask about starts on page 63 in either the first or second section. I haven't read this whole resource, but I've liked what I've seen. It's not written for doctors (phew) and so it has a very user-friendly tone...but it's full of good solid information.

PS to Jackie--I'm wishing you restful sleep and a better day for you tomorrow! Peace,

merrill

[Guest tearose]

Mornin' Jackie, I'm doin my coffee and reading. so, did hubby wind up under water or on the sofa? I laghued a good laugh at denabob's visualization. Hey can you keep a secret? I keep telling by sons that there is a typo on my birth certificate I say " I was born in 1966 not 1956" I try to pass myself off as 37 (cause I'm 5'3.5" and thin) but I'm really 47 and lately just sounding 77! So how old do I sound????? I'm actually wondering if it is just the 13 years of dealing with progressive pots that makes me sound old and experienced. Well, thank you for saying my words help. I can only speak from my heart and I always try to really hear what people are trying to say. I know how hard it is sometimes for us to gather our thoughts and then try to express ourselves...I took the doubtfire comment as a compliment although I think I'm just a tad bit cuter! How's your world looking today or is it too soon to know? warm fuzzies to you...tearose

[briarrose]

I second what Sue, Jersey girl and EM said, 100%!

Tearose - there is no excuse for that kind of BS doctor! He definitely needs a good your firing speech and a copy of his hipocratic oath (including first do no harm.)

[Jackie]

Well first of all the good news today is that I'm more at peace with things. I don't like it when I get that upset. I really needn't let things bother me so much but sometimes I guess I get worked up.

The long and short of it though that hubby went to bed while I was working to get my transcription done last night so we didn't talk actually. I think he was afraid to approach me actually and knew I was stressing or I wouldn't have been working that late. This morning when he left for work though, as he always does, I was aware of him kiss me goodbye on the cheek. I know things will be fine. We need to talk and I do still have some feelings about what I think he thinks but I should also stop probably putting things there that maybe aren't.

Now, to Tearose in response to your post last night...a couple things really stuck out:

"Maybe, just maybe, you feel bad that you can't be as strong as hubby wishes". This is absolutely true. I'm afraid he'll get tired of me being sick and tired and find somebody who isn't. He says we will be old in rocking chairs on the front porch someday and that he has no desire to have his life without me. I guess it is my own insecurity and trying to accept myself and changes in functioning complicating my insecurity that all men don't leave.

Secondly, "I don't need his approval because I am a complete person without him", this has meaning to me too, because I think I have lost my sense of complete independence that I once had and I feel the bond of the two of us being one. Maybe I need to be more independent thinking again, but then I think well if I make all my own decisions and go my way and he makes all his decisions without me and goes his way, what kind of marriage is that?

Then you said "We must want to be together with our soul mate, not need to be". This resonates strongly because it was a major thing we acknowledged when we got together. He has children and I have a son, but together we do not have any children, we met later in life (early 30s) and we talked extensively about this both saying it was so great to be with something because we want to and not because of strings or obligations...we both agree that the "wanting" to be together is the glue of our relationship...there isn't anything preventing either of us from walking away except our love for each other and desire to be together.

When you talked about the part where you sat down and told your husband what you wanted to hear and then he did and it made all the difference...well, I too have done that before and surprisingly I did feel better. I always thought before that that if I had to "ask" him to say it, it wouldn't feel as good, but it certainly did. I simply asked him to tell me "everything is going to be okay". He not only said "everything is going to be okay" he added "because we will do whatever we have to to make it okay". We hugged and I cried too. It was well worth the asking. It was all I needed to hear.

I know in my heart I'll never leave this man and I don't truly want a life without him. Sometimes I guess it is honest to say I don't always like him and I'm sure sometimes he doesn't like me. I think people who met young and married young and stayed together have a major advantage in that they saw each other in their total vibrancy of youth....because sometimes I think, well if he had only seen me when I was 22 back in the day! He hasn't seen the change in my abilities and energy level. When I point that out he says it is just aging...well I don't think it is normal to feel 70 at 37! But anyway, I know we met at the right time in our lives and when we did, I could see that everything that had happened had been working to bring us together. I honestly felt like I knew him immediately, like where have you been all this time? We sat and talked and talked the whole night when we first met like we had to catch up on everthing to the point that we finally came together. I do believe in soul mates and I do believe in destiny. Thank you for helping me think of the sweet times. I don't mean to come across like he is not good at all...I mean just last week he brought me flowers for no reason. He just has a way about the things he says sometimes that make me feel bad. Oh men!

Now for the Mrs. Doubtfire part it was a total compliment so I'm glad you took it that way! I just see you as this sweet little old English woman! I laughed so hard when I read that you said you are a tad bit cuter! I imagine so! Robin Williams in drag is not exactly what anybody wants to look like actually!! (though I thought he made a sweet looking old lady really!).

Earthmother thanks and I think the live chat sounds great! Maybe we can all just sign up for instant messaging or something and meet in that kind of environment...it is totally free and easy to download.

I am a little embarrased at being so upset yesterday but I think I posted before this has always been part of my personality...sometimes getting upset about something and it is hard and slow to let go...maybe I am mental in that regard..don't know. I just know by the time I was done working last night I was so totally mentally and physically exhausted that I went to bed late and woke up in the middle of the night completely congested and trying to go back to sleep my heart was racing and pounding but I fell back asleep all the while composing a not too nice letter in my head to the doctor and this morning I felt like I'd been hit by a truck! But...I've talked it out till I'm tired of talking and I cleaned the house am going to the bookstore and going to work later and tomorrow will mend things with husband since he will be home. I love Sundays...it is all down time!

Hugs to everybody. I can't tell you how much you all mean to me. The truth is life is a trust and a trial as well as journey (borrowed from the Purpose Driven Life book I'm reading) and I find that to ring so true...thank God for the good days because they make the bad ones worth going through and thank God for this board and friends like you!

[Guest Julia]

Jackie,

I have half a mind to go over to that crazy Doc--(if you can call him a doc at all)---and tell him a thing or two. What arragonce---I thought I saw it all---and then another looney doc pops up. Maybe you should have told him to seek psychiatric help---HE NEEDS IT!!!!!!!!! LOL

I remember you telling me about him before, but he sounds like he's getting much worse. I think he should be reported---definately. He doesn't know what he's talking about. I'm so sorry that you had to be subjected to such terrible ignorance.

If you need to talk---feel free to give me a buzz any time. Maybe my husband can help educate your husband a bit on this illness. Our symptoms are so much alike. I'll be happy to help any way I can.

Bottom line--------------------this doc should not get away with treating his patients like this. See if you can get your hands on your file---it belongs to you. You have every right to have it. Don't let that file get in the hands of any other medical professional. Then you need to find another Doc to talk to. I went to Dr. Davis who deals directly with ANS dysfunction patients---and other chronic illnesses. He located in Toledo---off Airport hwy----behind Joe's Crab Shack.

I just don't have any tolerance for this kind of abuse----that so wrecks a patients day---week----or even more. Your anxiety is seconday to ANS dysfunction. Just hold your head up high--------you have much more intelligence than that Doc will ever have.

Julie :0)