Autonomic Research Doctors

[DancingLight]

oh dear briarrose!

thank you so much for what you said. i'm sorry i was so defensive...

i have been really in a horrible potshole, with so many folks here, and i just think i'm a little bit cranky! sorry! it was a dancing dark day...

to be honest with you...i don't think you are 'gruff' as you say. that's a negative way of saying that you are assertive. i can be mousy and am sooooo super-sensitive that i actually really admire assertiveness and especially assertive women! women need to learn to be assertive and not think that it is negative! we are taught not to be assertive or that it means we are bossy, blah de blah.

okay, that was a soap box. i have been tooooooo trained as a sociologist by my mother!

anyway, we all need to work on our guilt. i am feeling the same way as you...overwhelmed and unable to keep up with all the posts that i want to. i have literally NO energy to type and it kills my neck and causes me a spell. but, ah, here i am doing it anyway.will we ever learn?????

i feel so indebted to everyone for helping me so much. it stinks that we all can't just be in the canyon together. i am beginning to think that the number of us in potsholes right now is too high, it's brreaking my heart! soon we are going to dig right into eachother. we'll just be diggin' and all of the sudden...voila! we're in a hole all together in one place.

oh, soooo...here's the scoop...i read your post and i had to smile and kind of get teary eyed. tea is right...we are all getting passionate about this...and that is good.

and then, realized...you are right...we are like family to each other. i care soooo deeply about people on this site and pray for each of you daily (extra prayers to EM, Mary from OH, tea, etc. etc. right now....).

i was so upset that i might have ruffled feathers today!

but, then, i realized, after reading your post...it kind of made me laugh out loud. we love each other enough to FIGHT! now, that's saying a lot. well, we're not fighting. but you get my drift. it's a good thing that we can have these discussions. i'm sorry i 'blew the whistle' on you earlier. i can hardly see straight these days, but that's not an excuse.

i did want to say...you go girl for writing all of those letters. also you do so much research which is amazing.

i don't know if i am 'cut out' for this stuff...so, i did get it together to email michelle about fund-raising. i think my 'skills' may be more suited for that aspect of bringing awareness to this illness and supporting people here. i think you will be just perfect to write letters...you are very educated on this illness. you've done your homework. now, go be assertive and don't feel like it is a 'bad' thing!

okay, i feel better now. hope you do too.

now...to catch up with everyone else....aaaaaaaaaaaacccccccccccccckkkkkkkkkkkk....i need more energy! like morgan said...an accomplishment is geting to the bathroom...who said anything about mars?????

oh good grief. i have to go to bed. i miss everyone here so much. i hate that i have been too sick to post. maybe if i learned ernie's brevity...that would be a very good thing!

goodnight my friends!

emily

see, i am such a cheesy mush....and i am rambling too! i think it is a pots thing.

oh, and briar, about being gruff and fed up...believe me...i can get pretty darn pissy about the injustices of disability, chronic illness, etc. etc!

[Guest tearose]

warning..I am very tired and very silly too...beware!

We are family!

We are an autonomic dysfunction family!

We put the "fun" in dys"fun"ction!

hey, I warned you!

[briarrose]

Emily

No Ruffeled Feathers here! Your an awesome person!

I was such a shy kid and young adult. After I divorced my husband, was sexually assaulted by a jerk from work and was raising my children on my own and then diagnosed with this illness, I found that I had to be more assertive or be taken advantage of. Now I'm almost too much the other way and I have a really bad habit of saying the first thing that comes to my mind without thinking it through. I appreciate what you said

I've totally agree with what you said about girls being taught to not be assertive, this is so true and sad. I try to teach my children to be a balance of both. I want them to do the right thing without getting hurt or hurting others.

Em - we all have bad days, I completely understand. When I wrote this post I felt very compassionate about this topic. I felt like I had to write it because I hurt for so many others here that are going through their own experiences.

Unfortunately I've also had this other POTS problem where when I think too much about something, I get lost in it. My head feels like it's swimming or that feeling you get after your twirled for several minutes. Perfect example is when I get into an argument with my boyfriend, 5 minutes into the argument I can't remember what we were arguing about, what my point was and my mind just stops thinking. Drives me nuts. I use to be able to keep track of things all the way through. Yesterday I took my son to the store and I got out of the car and told him that we were going to have to go back home because I forgot my purse, he said "mom it's on your shoulder. "

I'm very grateful for people like Tea and all of the others that keep us grounded and well knitted together, you guys all Rock

Emily I wish I could give you a hug right now; you and everyone else here.

I have to make a bathroom comment too. I remember my early days of POTS and how I literally had to slide off the bed and crawl on my hands and knees to the bathroom, what a sight, woman in her late 30's crawling. There were times that I was scared to sit in the bathroom because I thought I might do a header. Although I haven't past out in years, there are times that I'm so dizzy and feel faint, when the ears start ringing and you just get yourself to the ground before it gets to you

Thx for your last statement. I think it's an occassional reoccuring thing for all of us to experience. Chronic illness really is a process. You mourn the loss of your life, then you accept your illness the best that you can, you have times of anger, sorrow and sometimes depression (for me caused by the medical community LOL)

OK, I'm rambling again. Take care, hugs to all and just know I love my POTS family here no matter how upset or angry I get.

I swear I'm not going to rest until we are all heard and helped. Not just for us but for all the people out there that haven't been diagnosed yet either

[Ernie]

Hi Briarose,

I appreciate you telling me about your feeling. I have always felt that you are there for me. You do more for me than you realise. I also appreciate all the research you do for us and I would like to tell you more often.

Hi Emily,

You made me laugh when you said that you would like to learn my brevity because I was just thinking the opposite: I would like to learn how to write longer posts. I remember when I was a teenager my teachers were telling me that I was very concise. I didn't change much in all those years! Even now doctors are telling me that it is hard to get my medical history because I don't talk much. Oh well!

Ernie

[Miriam Poorman-Knox]

Here is my thought. We should pick a 2-3 week period and start giving interviews to the local tv stations health reporters. If you have a knowledgable pcp ask them to come too. My husband a dr. not in it for the money unfortunately, has been giving lectures to all the family practice residents, I go along when I can, but opne of the physicians in his clinic has pots and had to retire. We can do newspaper 's.

I know at pitt there can be a conserted effort to have grand rounds re:pots. There are about 8 female docs who did a womens health fellowship andKNOW pots. Plus they have a direct line to Dr.rubb.

Remember we must use our power, brains anf fight for positive change

Ranting Miriam

[morgan617]

Har My nephrologist said he knew what was going on, but wouldn't put it down anywhere, because his peers would think he was crazy! I said, try LIVING in this body.....Fortunately or unfortunately, he had a person doing a very bad job of billing and never got a cent for telling me that and now it's past the time my insurance has to pay, so they won't. Maybe that's his reward for not going out on a limb to validate me My doctor is a huge aids activist and has been on tv quite a bit here. But he just doesn't know enough that it would be of benefit except to say it's REAL. I should call my local tv stations and see if they do human interest stories. That would be interesting. "The silent wanna be killer that doesn't quite manage it, but makes you wish it would somedays" Great title huh? I could wear a mask and diguise my voice so all those doctors that know I'm really crazy would never guess it was me. This is rapidly going down hill so bye......morgan the invisible illness poster woman

[yogini]

Morgan, you are too funny.

Briar, I don't think you're gruff and appreciate all of the info you provide on the site. I also know what you mean about not being able to respond to all of the posts. There is no way I can, read, let alone reply to all the posts, even though everyone is in my thoughts.

On the outreach effort, that is something I would be interested in working on too, if I have enough energy left after getting my grocerice, LOL! I wonder if it might make sense to start with health-related channels (like the Discovery Channel) or someone like Dr. Sanjay Gupta from CNN (my favorite). Maybe there should be a DINET outreach committee...

-Rita

[briarrose]

Rita

I've also written Dr. Gupta. I've been writing and rewriting for probably 2 years now. I've written Oprah at least 3x. It's actually pretty easy because you go to their websites and they usually have a preprinted page that you fill in the blanks. I've written a couple of different stories now, always trying to make it appealing and I just cut and paste, saves me a ton of time.

I haven't tried Discovery and I'm wanting to write some of the women magazines yet.

Morgan

you are too funny

Miriam

great idea! I wish Dr. Grubb was in better health because I would love to see him write a book or go on the road talking to different prime time news shows. He is such an awesome speaker, very knowledgable and truly wants to help us.

Ernie

Thank you for your kind words.

I want everyone to know that I'm here for all of you and if you ever need anything please just shoot me an email. I have always felt bad that I don't read everyones post and sometimes if the subject title isn't something that I know anything about then I usually don't take the time to read it. But that doesn't in anyway mean that I don't care, I just don't have any good advice. I'm always happy to help you guys find anything you need. I just want you guys to know

Linda

About those symptoms pages. I'm still trying to find the other reference sites. It's very helpful if you go back to Pots Place and read all the information that they've posted here. I've also really enjoyed reading peoples stories that they have posted, some just make you cry. I'm not sure if I already said this earlier but Nina did a great page of information weblinks, you can find it at the top of the general information (above our posts)

It's funny I have a book case of informational notebooks that I've made over the past 3 1/2 years. Sometimes I'll spend a month trying to find something that I've read, it can drive a person in sane I have 19 - 2" binders full of stuff that I've printed, about symptoms, Dysautonomia, POTS, NCS, Orthostatic Intolerance, etc...

[Eli6596]

Hi

Boy, where do I start. I can see this from so many angles because I have POTS and am also a neurologist. Thank God I completed most of my training before being saddled with this illness, or I would not have survived the training. I too have been bedridden, crawling to the bathroom. I too have had doctors misdiagnose me. "It is just pregnancy". I too have had a doctor roll his eyes and shake his head at me. This person was my boss, a private practice neurologist, who scorned me when I would lie down between seeing patients. Thankfully, I found another job with much reduced hours, and a different boss.

I first want to say that I have not been offended by anything that has been said. It is good to vent. There is only one thing I would disagree with. I have never personally met a doctor who was in medicine just for the money. I am ashamed to reluctantly admit that maybe some could be. However, there are much easier ways to make much more money these days. My brother in law is a business man and made more in his christmas bonus than my salary for an entire year.

I can tell you that I did learn about the autonomic nervous sytstem in medical school, and about Shy-Drager, and multiple system atrophy in neurology residency. However, I was not taught a single word about POTS or neurocardiogenic syncope. This was in the early 1990's. I personally have seen a change in recent years. Most doctors around me now have heard of these diseases. They have a lot to learn though about treatment and symptoms.

Morgan, you hit the nail on the head about gaining empathy for others after having an illness yourself. But, that is not true for just physicians. Look at us. Don't we have much more empathy for someone with another illness besides ours? I believe some people just don't have the CAPACITY for compassion. They just don't get it. No big deal if you are an accountant, but a doctor can wound people without compassion. Some doctors have it and get burned out. It is so tiring and draining to FEEL and listen to peoples' suffering all day long. Some doctors will put up a wall to protect themselves. The thank you's, being part of improving someone's life, and sharing of laughter fuel my soul.

I do have a few ideas:

1) For POTS, I have copied the chapter from Dr. Low's book, Clinical Autonomic Disorders, for some of my past physicians to read. It is a good summary. Scientific articles, not from magazines or newspapers, are much better received.

2) Be concise and to the point in descibing your symptoms. Answer the doctor's questions without rambling too much. Please don't be offended by these suggestions.

3) Have you ever heard of NPH (normal pressure hydrocephalus)? No patient or caregiver had EVER asked me about this diagnosis until this year. There was a short segment on 60 minutes (I think that was the program). There was also an advertisement about the shunt for treatment of NPH on TV. I have had a FLOOD of patients and caregivers now asking about this rather obscure diagnosis. This could work for us. Proamatine is the brand drug for midodrine that some of us use. The generic became available last year. The makers of proamatine are probably losing lots of money because of that. If the drug company advertised on TV, it might raise awareness of syncope. A short human interest story on TV would work. Letters to Oprah, etc. are brilliant.

Well, I have been sitting way too long. I need to lie down. I bet that sounds familair. I want so much to belong in this forum even though I happen to be a neurologist. I need the comradarie that I see in this dysautonomic family.

Karyn

P.S. I laughed when I read about personalities in certain specialties. Too true. Pediatricians are usually the sweethearts.

[lindaf]

i fear this post may get shut down...it is getting a bit hostile? i'm going out on a limb here...

i see one of the top researchers in the country, and he has been a godsend to me, and i have not experienced what you speak of with him. i email with him weekly, can page him anytime, and he is very affirming and willing to try different things.  he seems to really 'get' how hard this illness is, has a wonderful sense of humor, and takes me very seriously.

i have had my share of AWFUL drs. appts., but i just don't think it's fair to say that all the researchers out there don't care about their patients.

okay, that's my post for the day.

emily

<{POST_SNAPBACK}>

Emily, You are so lucky to have found a doctor that completely understands and is willing to help anytime. Where do you live and who is the doctor? Thanks, Linda

[sally]

Hi Karyn,

I read your well thought out and well written post. Its great to hear from a physicians point of view as well as the patient side. If you don't mind me asking.....How did having POTS effect you do during your medical training? Was it much worse for you that it caused delays in your education & career? The reason I ask is my youngest daughter is looking towards medical school within a few very short years (coming up on her junior year next year and will be pulling her hair out studying hard for the MCATS).

She loves the biological sciences and is very interested in becoming a radiologist but is also interested in genetics & virology. We know her brain will make it but have concerns if the body can tough it out. She has alot of chronic pain issues (EDS) to deal with and also the orthostatic/fatigue problems. She has worked very hard while dealing with these issues and bound and determined to succeed in what goals she has set for herself and I think it would do us all some good to hear some positive input from someone who has been there. I would be very interested.

Personally I would rather have a physician that can relate to having health issues, not that I would wish anyone to have an illness but it does make a person more human and compassionate as well as giving understaning towards what their patients are experiencing, I believe anyway.

Thank you for your time and any input will be appreciated. It is wonderful to hear about your success in becoming a physician while enduring and in spite of this awful orthostatic health problem.

Thank you again.

[Eli6596]

Hi Sally,

I don't mind you asking at all. In retrospect, I think I may have had very minor symptoms of POTS at least as a teen. However, my POTS was not really a problem until during my first pregnancy. As a teen I passed out a few times when I saw blood. The site of blood does not bother me anymore. I did build a wall emotinally to blood during anatomy lab in medical school. It is essential or the dissection cannot be done.

During college and medical school I often pulled "all nighters" to study for tests. I don't think that POTS interfered at the time. During the junior and senior years of medical school, there are clinical rotations during which the student comes into direct contact with patients. During the surgery rotations, I did notice dizziness after standing for more than an hour. To stand an hour would be heaven now. I did not even know that the dizziness was abnormal at the time.

After my neurology residency I opted to extend my training with a fellowship in epilepsy. During the fellowship at age 30, my husband and I decided to start a family. The pregnancy triggered the POTS, and I was on bedrest for two months. LUCKILY, I had a fellowship director and chairman of the neurology department who looked out for me. They continued my meager salary while I did "elective reading". No-one harrassed me. I essentially recovered after delivery, but it came back during my second pregnancy at 35 years of age making me bedridden for 2 1/2months. POTS has stayed with me since then.

I never would have been able to complete my training in the condition I am in right now. I would not have been allowed to complete my medical school, and residency training without call (often no sleep for 36 hours). Timing was everything for me.

I no longer can take call or round at hospitals because of POTS. I had to leave a previous position because they wanted to make no long term accomodations for me. I had 3 recruiters looking for a job without call for me. Most places would end the phone call very quickly when they heard I could not take call. Not taking call makes some of the other doctors in town mad at me. I do have coverage but they think I am shirking my responsibilities. They don't care that I have an illness.

I don't want to discourage you or your daughter. It is important to go after your dreams if at all possible. She probably would be a good compassionate doctor because she knows illness personally. Some doctors have compassion even without experiencing illness. When she applies for medical school, she should make sure that she presents the illness as a plus. Presenting the illness as stable and well controlled would help too.

Chosing the right field of medicine is key too. Some are less rigorous physically like radiology. They can sit a lot while reading films. She needs to like anatomy and not mind being in a dark room all day. Other suggestions include dermatology, pathology, or a primary care physician just working in urgent care (no call and much more low key than the ER). I bet a geneticist doesn't take call. During medical school she might want to consider living at home to get extra support given her illness.

Some illnesses get worse OR better during pregnancy. Unfortunately, training to become a doctor coincides with the best baby making ages physically. Taking care of a baby during training drains energy, especially with an illness. She needs to decide if she is comfortable delaying pregnancy until after training IF necessary. If she is like me, pregnancy was the furthest from my mind at her age.

Get private disability insurance now when she is young and can get low premiums!! I would have been destitute without it in the past.

Sorry so long winded! I hope this helps.

I also wanted to mention that I will be going to the annual American Academy of Neurology meeting in Miami next week. Traveling will mess me up but they have arranged a scooter for me. I have enrolled for the session on autonomic disorders. Dr. Low will be speaking, among others. Does anyone know if Dr. Grubb will be there? He sounds wonderful. We need to clone him!!! I will bring up how so many doctors don't have a clue (I will be more diplomatic. Honey catches more flies than vinegar) about these disorders, and what can we do to change that? How can we make sure that the medical students are learning about these illnesses in medical school? What about starting a fellowship for residents (cardiologists or neurologists) to be trained in the subspecialty. What about a "canned' autonomic lecture to give to neurologists in the local areas to discuss with the family practice residents. There is a CD provided by the Academy on other neurology topics now. I will ask these questions at the meeting.

Again, sorry so long winded.

Karyn

[briarrose]

Karyn

Sorry I haven't responded to your first post yet. The past 2 days have been very busy and I'm just coming off my 12 hour shift. But I really wanted to respond to your post to Sally, kind of feel like I'm budding in, sorry.

I think it's great that your going to the Conference next week and want to advocate for us. I don't know if Dr. Grubb will be there, he is just getting over some major medical problems of his own. We were all very scared for him these last couple of months. God help us if something happens to that wonderful person.

We have talked about cardiology fellowships but even Dr. Grubb will tell you that there aren't any takers and mostly because there isn't any money in it. Shhhh, they haven't figured out how much money is actually there yet, is more like it. Do you know how many thousands of dollars are spent running every test in the book to figure out what's wrong with us over years. When Dysautonomia is bad we see several specialists. Missed time at work, disability, treatments, medication, etc. I think we are actually money makers

We need to get this out in the public eye. A prime time news show would be great.

How can we make sure that the medical students are learning about these illness? I've been wondering that for a few years now and don't have any simple answers. Who should we go talk to about some restructure on curriculum and content?

Maybe a power point presentation on Dysautonomia's that can be presented at Grand Rounds?

We have also brought up making our own CD before but never got past it as a thought It's a great idea and something we should push in the near future. I wonder if we should contact The Center for Medical Education, Inc and see what they have to say about it.

Ok, don't think I have much brain power left. Time for me to go to bed. Talk to you all later.

Steph

[sally]

Hi Karyn,

Thank you for your quick reply and response to my message. I appreciate the information you shared about your experience, it really helps paint a picture of what might be to come so to speak. It'll help give an idea of what to expect.

I talked about you with her last night and it really helps that she hears someone made it in spite of having major difficulities to overcome. We support her wholeheartly but as parents we worry as well about the physical exertion of it on her body. Her mind is very strong and determined but she gets frustrated having to deal with so many physical issues while trying to accomplish what she wants. I think that's a big struggle for her.

When she looked at the medical profession in the beginning as a possible goal she considered what might be the best solution to her problem (being able to sit more/less demanding) but I guess we'll all find out more as time goes on. She is also interested in the research side as well.

One big help for her was her Cardiologist (a Godsend!) put her on Midodrine, without that I don't think any of what she is doing would be obtainable. It has helped her alot but not much of what we have tried over the years has helped her chronic pain issues much except moving her to a warmer climate gives her some relief.

Again, I appreciate the time out of your busy day and effort you took to write and I hope you have a wonderful day. You are to be commended on your accomplishments while dealing with this health issue as every one on this board is as well.

Have a good one.

[morgan617]

OMG Karyn, I said nuerologists were somewhat cerebral and odd. Hopefully my following comment about being odd in not a bad way helped. Open the mouth, insert the foot.... I just saw that it's sort of like when a bunch a women work together they all seem to start having their cycles at the same time. And so it is in medical practice. You just see a lot of the same type personalities in the professions. Yikes, sorry if I offended. I do believe you, that for the most part doctors don't do it for the money. Especially these days. There was a time when it was very profitable to be a doctor, but those days are going quickly along with the quality of care by health care facilities. I'm not sure what has happened to make the medical world the unhappy and cold place it is becoming, because it sure wasn't like that when i started out as a nurse. I remember doing back rubs at night before I left the hospital and actually being ridiculed by newer and younger nurses who wanted to know why I wasted my time like that. I told them making a patient feel a little better wasn't a waste of my time, it was my job and my calling. There are plenty of nurses in this for the money too, and hospital administations are making it impossible to provide the care essential to people, while lining their pockets.

When my friend had her liver biopsy in the hospital, they were required to get 15 minute vitals on her and check the site. She also had problems with her O2 sats. I put the oxygen on her and they put an automatic cuff on her, set it for 15 minute intervals and we saw them again 1 1/2 hours later. I was a nurse, they knew it, and so they left her there. What if I hadn't been there? I think the same thing would have happened. So this is not just a doctor problem. Our entire healthcare system is going to heck in a handcart. I am absolutely not a fan of socialized medicine, but at this point, our system is letting us down too.

There are so many things going on in the healthcare field these days that aren't good, somedays I'm glad I can't do it anymore. What a sad thing to have to say. I admire you Karyn for sticking with it and I believe you are right. It is unfortunate but doctors do have the power to do more damage than anyone if they lack compassion. But this also applies to nurses, or anyone who deals with the health care issues of people. There is a certain special vulnerability when it comes to doctor patient relationships, and if the doctor is incapable of compassion, I say again, there's always pathology.... morgan with the red face

[Eli6596]

Hi everyone,

Morgan:

Morgan, don't be silly. You really did NOT offend me, silly goose. No-one has offended me at all. Now, I don't want anyone to be self conscious about what they write because I am a neurologist. I came to this site as a patient too. Besides I AGREE with you. Neurologists are cerebral, compulsive, and some are odd. I definitely am compulsive and poundering. Psychiatrists are the oddest though. I have long made observations about the personalities of certain specialities. I find it highly amusing.

My mother in law and materal grandmother are retired nurses. My mother in law tells me stories of the way it used to be. My predominant response is sadness and shame that some nurses and doctors are so cold. There are so many factors responsible. For nurses, I see the major problem as understaffing. They are stretched too thin. For doctors, insurance companies don't fairly compensate which leads to offices wanting to jam pack the schedule with lots of patients. This overworks the entire staff, leading to emotional burnout.

Biarrose:

You were not budding in. I agree that those annoying tests are expensive! I just paid off my Mayo bill from last year. There are fields of neurology that are much more profitable though, like neuromuscular disorders and sleep medicine. I will pose the questions about teaching med. students at the American Academy of Neurology meeting. I have never heard of the Center for medical education. The CD would need to come from a "leading expert" to get the proper attention. I admire your tenacity! You are amazing to write all those letters.

Sally:

Midodrine saved me too! Despite toprol 200 mg a day, I could only work 1 to 2 hours a day, sitting most of the time. Thanks to midodrine, I am able to work much more.

I feel a bit addicted to talking with you all. I am neglecting things. I may have to go on a ten step program to control myself! Tearose, do you have a jingle for that? I am still laughing about the sugar conversation!

Karyn

[briarrose]

Morgan

Wow, yeah I hear you on the world of medicine! I can tell you so many ***** stories lately it turns my stomach. I've talked to so many doctors that said if they had known what was going to happen in medicine, they would have chosen a different career and in fact some went back to school to get their law or business degrees and switched. With Insurance companies dictating how they can treat a patient or what tests they can and can't order it's ridiculous. The administrators are lining their pockets at the expense of absolutely every person involved from staff to patient.

My mom is a nurse like you who is there 100% for the patient. She does sweet things for her patients all of the time. On the normal average mom gives hours of free time everyday staying after to finish up little things for her patients that she isn't allowed to get paid for. The nurses are yelled at if they put down any overtime and then counseled if they do put down overtime. So she just does the right thing for her patients. A couple of years ago she finally became the president of the Nurses Association so she would be in a position to fight for the nurses too Go mom!

I have to listen to nurses almost every shift complaining about their job. I love working with the ones that are truly there to make a difference, but it seems like there are so few. Then there are the ones that do it so they can travel and get paid good wages, they are the ones that ruin the department.

When a nurse would say that she is burned out and wanted to change profession, I used to beg them to stay. But I've seen what they are like when that happens and now I just say "it might be a good idea to take a break from nursing if you're feeling that badly."

We have a nurse in our department that has a chronic illness and gets fatigued easily, sometimes her symptoms flare at work. The other nurses eat her alive, they don't cut her any slack and push her beyond her limitations. I feel so horrible for her. She can't take it anymore and is job hunting for another position.

Sally

I know Karyn was recommending some specialties for your daughter. I know at our hospital that we rarely call a podiatrist, dermatologist, allergist, maybe research (sleep study if she has insomnia) jk Ophtamology might not be bad. Geriatrics might be a good idea.

Bad areas would be ER medicine because of the adrenaline rushes and sometimes long procedures on their feet. Cardiology is over worked and we call them constantly. Surgery and orthopedics would be bad because of the long hours of standing. All of our radiologists have to take 24 hour call and they get the snot beat out of them at night. Neurology is so..so, we see a lot of stroke, seizure and then there is that occassional weird unexplained neurological symtoms patient, so they get called quite a bit but they also never come in during the night to the ER because they just give advice over the phone. Pediatrics gets calls all night long. GI is bad because they have to do long procedures on their feet.

We hammer internal medicine and family practice docs all night BUT if they are in a group that has a hospitalist that admits their patients then they rarely get a call or come in regarding a patient that is coming into the hospital.

It might do her good to check out some job prospects before she invests a lot of time in medical school. Just to see what is available to her and what kind of slack she might be cut for her illness. My son met with the dean of medicine where he is going to school and he gave him all kinds of great advice. My son is looking to be an orthopedic surgeon or go into ER medicine.

I'm sure if she takes care of herself and with all of your support she will make it and I would rather see a doctor that knows what it's like to struggle through a chronic illness. She would make a great doc!

[Miriam Poorman-Knox]

Karyn,

Dude why don't you focus on pots????? Dr. Low is a neurologist and since both

cardiology and neurologists treat pots it could be a great endeavor. My husband is a doc and has had to learn about this from my condition. You could do this c/ no call.my address if you wantmiriam15221@yahoo.com. My husband is an assist. res. dir and assist dir for faculty development. I am inspired by your story.

Have fun at the conference...... Miriam

[briarrose]

Karyn

I love the fact that you are here it will be great to get your input if we can get some ideas off the ground, if you don't mind.

I'm going to have to go back and make sure I didn't say any stupid remarks about having to see a neurologist last summer All kidding aside, he was an extremely intelligent man though and is highly regarded in his field.

The center of medicine education make a lot of the continuing education CD's that some of our docs listen too.

It is addicting when you join here just because there is so much information about symptoms, medication and support. Speaking for myself, IF I'm having a new symptom I usually come here first to see if anyone else has experienced it and what they've done for it. If I go to my doctor with a new symptom he says "you are like a diabetic. They have to learn to deal with their illness and you really need to see a psychiatrist about managing your symptoms." The funny thing is, now that I know what I have I rarely every go back to him twice with the same problem. I usually wait and talk to Dr. Grubb about my problems.

For me personally, I've had so many new and strange symptoms that are scary. Since this past weekend I have had shooting pains in my spine. I haven't had those since I received my flu shot and hepatitis shot. I almost went to the ER but I usually just suffer at home to avoid that fall out. Not to mention I work there so I better be about dying before I go in.

I know others that feel as I do about the support of this board. We rely on each other pretty heavily at times and it's a lot like family here. In fact I couldn't and wouldn't talk to my family or friends about many things that we discuss here. Only the people here understand.

I've been burned out occasionally and reduce my time here. I usually look at the topics and am more apt to read the ones that I understand symptom wise because it's something I've experienced myself. I will almost always try to give advice in areas that I think I have something helpful to say.

[morgan617]

Karyn, I have to tell you a funny story. I went to my GI doc for a visit (They are laid back and not anal retentive, harhar) It was a particularly depressing time for me and he was very worried. He's quite a sweetie and I've been going to him a loooong time. He sent me upstairs to a psychiatrist to see if he could help, even though I already have a therapist, but I just wanted to make him feel better. Talk about Odd Ducks. I was laughing so hard by the time I left, I had to go back downstairs and tell Dr. G that if he thought I was bad, he had another think coming. I told him this guy was so anal retentive and compulsive that he'd better hope he never had to do a colonoscopy on him as he wouldn't be able to get a toothpick in that behind!! I thanked him for cheering me up and went on my way. He was completely baffled, but laughed too and said maybe he wouldn't reccommend that one anymore. I can remember when I could spell and was sure it was right. And you will become vewy vewy addicted to this site and we will wuv it!

Briarrose, that was sweet of you to say what you did. I have never been a person of great self confidence, But I will say this. I took darn good care of my patients and I was a good nurse. I may never be good at anything else, but I was good at that. It's a question of love you know. You have to love what you do to be good at it, and I loved nursing with all my heart. There was nothing I liked better than to sit on the edge of someone's bed and draw pictures and explain how something was supposed to look and how their's looked and to see a light come on and know they understood something and were less frightened because you took a few minutes to explain it. Or even crying with people when there was nothing more to be done. Or giving a darn backrub to someone who had been in bed all day and see them close their eyes and know how much they appreciated that little tiny thing. Those are the kind of moments that mattered to me. I never once thought of anything but hands on nursing. When they laid off too many people and I couldn't take care of them the way they should be, I took a huge pay cut and went to where I could. That's where Karyn is right, the offices are crammed and overbooked, but it's not really the doctor's fault.

I will go on medicare this year because it is my second year of disability and I asked my pcp of 20 years if he was still going to see me. He said, 90% of my patients are medicare and medicaid. I said why do you do that, there's no money in that. And he said, someone has to do it. And that says it all. Oh Lord if they could all be like that......morgan

[briarrose]

Miriam

You are too funny.

Yeah the docs that normally take on POTS patients are cardiology, neurology and infectious disease.

Now that Miriam mentions it, I think that all of the leading researchers are Neurologists.

Dr. Goldstein I believe is a neurologist at the NIH and has done great things for our illness. Dr. Robertson is a neurologist at Vanderbilt. Dr. Low at Mayo. OK, That rounds out the field of the 3 research facilities for us, Neurologists, hmmm go figure, Autonomic

[briarrose]

Oh Morgan

You made me laugh so hard, so early in the morning for me too

We say the same thing about our psychiatrists

Your doctor sounds like heaven. Now that's the kind of good people I'm talking about.

We had an incident at work 2 weeks ago that I wrote up because it was so horrible. I've never been so appalled, disgusted, embarrassed to work in my department. It's those kind of nurses that could be taught a lesson by experiencing their own hardship medically, because they aren't ever going to get it and I just pray that they don't kill someone in the meantime. For the record in my 10+ years, I've never written something like that up before but someone needed to speak up for the patient.

[DancingLight]

hey, this thread is sooooo good (boy, am i retracting my earlier words, huh?)

karyn, karyn, karyn, welcome, welcome, welcome...please feel that you are very welcome here as a 'patient'...i just read all your posts in this thread and they are just wonderful!

i have so much to say, but noooooo energy. this is so frustrating not to have the energy to correspond with you all these days. i miss it so much.

i do get hooked though, and type even when i shouldn't be (i.e. now)...it is definitely addictive, karyn!

people here are so wonderful and it is such a great community. and i agree with steph that we share things here that we can't other places.

morgan,

your posts brought tears to my eyes. i know how much you loved being a nurse...and it breaks my heart. and, boy oh boy, do i wish that YOU were my nurse in the hospital. karyn is right that compassion makes or breaks the care. man, i had either the most wonderful nurses or the most hateful ones---there was nothing in between. the ones who were kind, i thanked a thousand times...and they really did make the difference. i bet those backrubs changed people's lives! i hear you on wondering if you weren't there for your friend what would have happened? one of my parents was with me 24/7 b/c the nurses often did not respond to my call bell, rarely checked my bp, etc. etc. the nurses who took the time even to rearrange my pillows for me and get me comfortable...what a huge blessing! it does make all of the difference. i just kept telling the wonderful nurses how wonderful they were. i am convinced that the reason i ended up with a UTI was b/c the nurse on duty kept telling me 'you don't have to pee!' by the time they emptied my bladder i was crying in pain and discomfort, the male nurse couldn't find my 'hole', had me bleeding everywhere, and i had over 1000 ccs of urine. the same thing happened again later when i couldn't pee. okay, i know when i have to go!!!! please empty it! it was terrible being at their mercy when they wouldn't respond. when i was able to go on my own, i still needed help getting up...i said i need to move slowly, i'm very dizzy...she said 'well, i don't have time for that, you'd better hurry up.' i was in tears. anyway, sorry, this was not supposed to be a long post. i am supposed to be pacing myself! i just needed you to know morgan, that i KNOW how much nurses make a difference. you help us all here every day. and, i know you are not able to work now, but you DID change lives. and some people go through their whole lives without changing one life for the better. in the talmud we say...'to save one life, is to save the world.' hold on to that one, k?

all this being said...i love the discussion we are having about the medical profession overall. i have so much to say about this too! but, you all have it covered pretty well! i just think the doctors have it pretty darn rough, as do the nurses these days.

i too, wanted to be a doctor, then later an NP...but then i got sick. honestly, now i say...who would even want to be a doctor in this medical system??? it is so tough...so tough...

we must appreciate the doctors we do have in dysautonomia, b/c there is definitely not money in it.

okay, i'm losing my focus...just want to say i feel for all sides these days...patient, doctor, nurse, etc. etc.

later alligators!

emily

[Ernie]

Hi Karyn,

Please feel welcome here with the rest of us. Your posts are very interesting to read and you have lots of understanding (intellectual and emotional).

I can understand a bit what you are feeling as a doctor being myself a psychotherapist and massage therapist I wear 2 hats (patient and holistic therapist).

To everyone,

Well I will miss you guys during my stay at the hospital but I will try to get on the net if it is available and if I am up to it.

Ernie

[briarrose]

Ok

Sometimes I don't give credit where credit is due. But I know this started out as a rant

I have had some really, really terrific nurses taken care of me and I'll never forget them as long as I live. I had a vocal chord implant 2 years ago and had intractable vomiting. The nurses were right there giving me anti-nausea medication everytime I started heaving. It was the best care I've ever had.

But I've also had those ones that I'll never forget because they hurt me emotional so bad. The first time I was admitted with tachycardia and I was trying to remain humerous the nurse looked at me and said "honey you're the wellest person on the floor, why did they admit you?" I've had several say you know your tachycardia is just anxiety. I've only been anxious a couple of times in my life, I hate it when people jump to an ***sssumption when they really don't know what they're talking about. Or telling me that I'm not really experiencing the multiple symptoms that we do, all at one time.

Nurses, my mom has been a nurse almost her whole life. Almost everyday when I was growing up she would say "Never Ever Go Into Nursing!" She's a great nurse but the politics are horrible.