briarrose

You guys are hilarious. Don't get me wrong, some of those lines set me off at first too and I about popped a cork but my friend who is chronically ill and has had Heart surgery because of Marfans calmed me down and said see the other meaning of these things. Now I have to laugh at most of them. I wear my shirt to work and people stop me to read the whole thing often, it's great

TeaRose I think it was meant cynically The list wasn't mine, I took it off a t-shirt I bought last year from the Invisible Chronic illness website. But they are still selling shirts.

Karyn There's instructions at the top of the page under my controls to create your own Avataar or Nina can help you. I hope that you give being a POTS specialist a lot of thought, we could use one of our own here. Who better to believe us then someone that has it. I think you were a gift sent to us from Heaven

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.

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.

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

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.

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!

Ernie That is fantastic, especially for Canada if you know what I mean I would love to hear more please. Are they familiar with any of your, already, diagnosisis? What kids of tests do they do there? How long will you be in the hospital? What kind of degree does this doctor have? What kind of muscular disease do they think you might have or did they say? I know I'm missing some questions but that's a good start Steph

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

I don't remember all the tests that I've had but the tilt table was the most important. I do have frequent blood tests to check my hematocrit and hemoglobin before I get my Epogen injections every week. I had my catecholomines, norephinephrine levels checked. Stress test, echocardiogram, doppler non-invasive study, Ekgs, CAT scans, MRI, Electro-conduction test (?), holter monitor, king of hearts, etc. I take Epogen injection, IV Iron, Kerlone, Pepcid, Synthroid, Florinef, Neurontin, Zoloft, vitamins. Imitrex for my migraines. Hydroxyzine for itching. Sonata for sleep. Zofran for the constant Nausea. I where restrictive nylons. Drink 1-2 cups of coffee a day to help with blood pressure. Plenty of fluids, extra salt and I have a standing order for IV saline. I've tried taking magnesium supplement, I had a bad reaction to Proamatine and one of the other SSRI's. I have Mestinon here but haven't had the courage yet to try it. I'm sure I left some out but it's my bedtime

James Congratulations! Just be calm by being confident in yourself. Don't eat a lot of sugar or caffeine before hand. Drink plenty of water, broth or possibly gatorade before hand. I wouldn't recommend exercising if your not use to it, might trigger long term exhaustion. Clear your mind so that you can sleep, don't be thinking about what if's!

Here is the website that I found last year http://www.mychronicillness.com/invisibleillness/home.htm Here is the webpage specific for buying a t-shirt, dated or undated http://www.mychronicillness.com/comfortzone/item109.htm

This is something that definitely needs to be managed and explained by your doctor. Really low sodium can be dangerous and caused by another reason. Many of us dont suffer low sodium but instead need to increase it beyond the normal persons intake. Please be safe and follow up with your doc. Take him a list of questions and concerns

Janine Here is a list of doctor's by Country http://potsplace.com/physicians.htm There is also one at the NDRF website but probably not updated recently. We all struggle with good doctors. I travel a couple thousand miles to see mine and he sends my doctors information on how to manage my case. Try and EPS cardiologist though and ask if they know anything about Dysautonomia or POTS before you see them, otherwise probably useless on speedy help. I don't know what your main symptoms are but there are a few different speciality doctors that see us too. We all have a tough time because there hasn't been much education for doctor's about Dysautonomia, funny isn't it, the main system of our body. Like owning a car and not having any mechanics to work on it Let me say that you live in a good part of the country to find a doctor. Because the West Coast is nearly out of the picture all together.

Hayley Great news! Congratulations!

Last fall you guys here made me so passionate about educating people that I approached my manager and asked him if I can do a monthly bulletin board educating staff and public about different illnesses. The month was September and one of the topics was Invisible Chronic Illness Month. Now let me tell you that sometimes it is hard to research a topic and find Credible websites. I can't just throw any information up on the wall Anyway I found the website that sponsors Invisible Chronic Illness and they actually had a package of stuff, posters, stickers, keychains, buttons and T-shirts. I bought 2 t-shirts and I wear them often at work. People always stop to read all of that info and Yes it's all on the back of one shirt. I took each of those sayings, enlarged them, put them on color paper and pasted them to a different color backing, then posted them on the bulletin. That bulletin board was our biggest hit. I say ours because I talked a gal with Marfan's syndrome into helping me with the board, too much for one person. Morgan that one made me Laugh too Some of those saying just hit home. Ernie that's pretty much all, but it opens your mind doesn't it. There are so many Invisible chronic illlnesses, it blew me away. Ok, off topic a little - All of this makes me think differently. When I'm out on the road and someone is in a hurry, I don't always immediately think road rage anymore, I think maybe they have an emergency, maybe they don't feel good and are trying to get home or to a loved one. I know that there have been a few times when I've been really, really sick and had to drive myself to the doctor, I make stupid mistakes and I know I shouldn't be out on the road. Sometimes I've been honked at and I've pulled over to get my head together or just drive back home. I think that we are really strong people here and sometimes we try to do too much. Ok, I'm done and thx for listening to me ramble, I've been horrible at that this week

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...

Miriam I'm so sorry for your loss. It would have been nice to see her and have some closure. That was very wrong of your brother. Do you get along with any of your siblings? So that you have an inside scoop on what's going on? If you want to go to the funeral I think you should be allowed to go. Either be upfront about it and tell your brother or wait until the day of the service and just show up. I know what it's like to live that kind of life. I've had 3 alcoholic fathers. Very grateful that the second one died as he was very abusive. Anyway, try to hang in there and let us know if there is anything we can do for you. Sincerely Steph

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

Earth Mother Hugs to you! Plus everything that Merrill said because it was so perfect

Morgan We're all here pulling for you. Sometimes it seems like you've had more than your fair share and you keep getting dumped on. It's not fair! I call these my challenging times and always hopes that it helps to build the right kind of character in me and I don't crumble. Take each thing individually and don't let it overwhelm you. Is there anything we can do to help you? Miriam I didn't read all of the posts so I hope I'm not taking this out of context. We do have an Orphan Disease but it doesn't qualify for government monies.

Last fall I bought a T-Shirt that hits home and I wanted to share what it says with you guys 33 Ways to Encourage a Chronically Ill Friend Be Patient when I can't explain myself Stick Around Illness gets lonely Do laundry Recognize my pain hurts, even though it may not be as bad as some people's Just listen Refrain from sharing farfetched cures. I've heard them all. Don't get upset when I cancel plans Loan me good books you've read or CD's that have encouraged you. Believe the illness exists Don't say "snap out of it!" Yes, I know my illess is caused by stress When you don't know what to say, just tell me you care I know I look good, but looks can be deceptive Remember me in your prayers Tell me I'm doing a great job of coping Remember my whole family is effected by my illness Don't be afraid to share the challenges going on in your life too. They are important to me No, you won't catch it. Take the elevator with me Understand God heals in his timing Keep me laughing My immune system is very fragile Please wait until you are completely well before you visit Share how you stay encouraged during difficult times Understand that though your "normal" and my "normal" will never be the same but we can still be friends. Try not to tell me, "Everything will be just fine." Give gentle hugs Ask me to go do things with you. I won't always be able to go, but I still want to be included. Sometimes I want to talk sometimes not. Tell me how I can encourage you. I don't want it to be all about me. Basics, like errands or help cleaning, mean more than you will ever know Remember that silly things like the weather significantly can change my pain level I don't expect you to fix it, just hang in there with me. Know you mean the world to me, even when I don't say it. Many of these statements hit home for me and a friend that I work with who has Marfan syndrome, so we talked our manager into letting us make a bulletin board out of them.

Emily It's ok, we're on the same page. I know that sometimes I come across as gruff but it's just a matter of being fed up and having your hands tied. I so desperately what to do something to make a difference. I have written so many letters to people about POTS. Everyone from my local government to The Oprah Show, 20/20, Primetime, Newsweek, my local news stations, the local broadcasting company, Jane Pauley, etc. Again I just really want to help more than anything. I feel like I'm sitting here with my hands tied when what we need is a huge push and recognition. And we all need each other here, Family Morgan It's so funny that you brought up the comment about the fact the doctor's don't learn much about the autonomic system in med school, I was told the exact same thing. In fact, when I was telling one of my doctor friends that I had POTS he said isn't that the fatal one; he was talking about Shy Drager. Hey it would be nice if they could experience what they treat I've seen some doctors when they keep a simple injury or illness, WOW, watch out because they are demanding and don't like to be kept down I hate listening to normal people whine about having a cold and a runny nose, that's when I usually hand them stuff from the Invisible Chronic illness awareness website. I also hand out Chris Caulders Mind Experiment for a Doctor http://home.att.net/~potsweb/mindexperiment.html Morgan, TeaRose and everyone else It is important to take baby steps. Did you guys see where the Chronic Fatigue Syndrome foundation wrote a genetic letter and then happy people log into sign it and it was already set up with forwarding addresses to the Sentate I believe. We should think about something like that. I nominate someone that doesn't step on toes like I do. TeaRose your a good writer Rita Unfortunately we do need all the doctors that we can get that have experienced Dysautonomia. But we also need doctor's that believe in us. I wouldn't want a Lawyer defending me that thinks I'm guilty of murdering someone Sometimes, doctor's have an off day too and I think everyone deserves probably at least 2 chances. Dawn I have met all kinds of doctors too. I love working with the ones that sincerely care about the patient as a human being. But I too know doctors that are in it just for the money and it makes me sad because they are the ones that can be so callous. I'm grateful everyday for everyone at this website. I often don't respond to all the posts that I would like to and sometimes even feel bad or guilty when people need support and I don't chime in; TeaRose and Earthmother 2 great people here had recent posts wishing them well and I'm still feeling guilty but I think their wondeful, just like everyone else here. I feel horrible for people that are really sick with their symptoms like Ernie and I'm not completely sure what to say. I'm here if you ever need me to look up things or help find resources, I promise to do the best that I can for any of you guys. I sometimes have to stop and go back to read about great people such as Joni Eareckson Tada, very Inspirational story. It kind of puts things into perspective for me. OK, I'm rambling now

Pain and itching, yes Pain is harder to answer. It depends if it's muscle, bone or joint and the location. I started with the itching about 3 years ago. I take a half of a benadryl and I also have a prescription medication, hydroxyzine. I hate the itching sometimes it can be so intense. I find now that I have a problem with certain dyes in foods and medications. All of my medications have to be a white, no dye form.