briarrose

Definition of Human Resources - A group of people that represent themselves as there for the company employees but are really there to protect the company and screw the employee This issue is always best resolved by spending $100-200 consulting a lawyer that specializes in these problems; ADA, EOCC, Harassment.... steph

I would like to share this announcement that I received this morning. I try to keep up on what is happening with CFID's because it is known to overlap POTS. In my opinion, POTS is probably the answer that some of the CFID's patients are looking for. But I also know that the Europeans have been doing extensive research and can actually prove a viral exposure. Another sorting out diagnoses I guess. I hope to eventually see support and funding for POTS that CFID patients receive. I feel like marching Congress myself! Please see attached email - This is from CFIDS of America Action Alert!! We're nearing the end of our Grassroots Action Center awareness campaign. This alert will be followed by one to be sent on May 12, CFIDS Awareness Day. From that point forward, we'll issue Alerts! as timely opportunities arise. This week we focus our efforts on the National Institutes of Health (NIH). It is the world's largest biomedical enterprise, with a total budget of $27 billion. Organized into 27 institutes and offices, the NIH supports research by intramural scientists housed in its own labs and thousands of extramural researchers working in universities, hospitals and other institutions around the world. Over the four-year period of 1999-2003, the NIH has reported support of CFS research totaling $31.6 million. The amount is hardly adequate for a disease that affects at least 800,000 American adults and children, costs the U.S. economy nearly $9 billion a year and remains challenging to diagnose and treat. We need NIH to redouble its efforts to find the cause(s) of CFIDS and biomarkers and effective treatments for it. In this Alert! you will find a letter addressed to Dr. Zerhouni, director of the NIH, that you can use to voice your support for an expansion of NIH support for CFIDS research. Dr. Zerhouni knows what CFIDS is, thus we haven't taken up space with a basic description of the illness. Instead, we ask that you take an extra few minutes to "humanize" CFIDS. We've provided room for you to express the impact that CFIDS has had on your life, or the life of a loved one with the disease. To participate in this week's campaign, please go to http://www.cfids.org and click on the Capitol Building icon on the left navigational bar. Last week, over 2,453 letters were sent to Secretary for Health Tommy Thompson and key members of his staff. Since our campaign began on April 16, more than 6,415 letters have been sent to lawmakers, media and public health officials. We are beginning to receive notices that the Letter to the Editor you helped circulate is being printed. Already The Advocate in Baton Rouge, La. And The Capital in Annapolis, Mary., have published the letter. We'll keep you posted as the list grows. Thank you for participating in the Grassroots Action Center campaign. Send your letter to Dr. Zerhouni today, and continue spreading the word using "Tell A Friend." Please note: When sending the Alert it appears that you are sending Dr. Zerhouni duplicate e-mails. However, Dr. Zerhouni has two separate e-mail addresses and we will be sending one e-mail to each box. K. Kimberly McCleary President & CEO The CFIDS Association of America P.S. Sign up for the Grassroots Action Center listserv so that you continue receiving Action Alerts! after the intensive phase of our campaign ends. Just check the box that follows the area where you fill-in your name and address. Then confirm your request by replying to an e-mail message you'll receive from the site. (The confirmation e-mail is sent to ensure that Alerts! are sent only to those who wish to receive them.)

How is Sue doing? Can you give us an update please? How are you holding up? steph

Paige Don't you have a union that you can file a grievance with? steph

Happy Birthday Deb! Hope you have something fun planned for today. Here's to many more! steph

I'm so sorry, please keep us posted and let us know if there is anything we can do. I wish I had an answer for you. I took Celexa for a short time but didn't do well with it, caused horrible headaches for me. Celexa this is a cut and paste job taken from Potsweb Celexa (citalopram hydrobromide) is a selective serotonin reuptake inhibitor similar to Paxil, Zoloft, and Prozac, but with the claim of fewer side effects and less potential for negative drug interactions. Serotonin reuptake inhibitors have been used for many years to treat neurally mediated hypotension and syncope (passing out). The mechanism through which central serotonin levels effect blood pressure and heart rate has not been fully mapped out. The net effect of Celexa appears to be to increase nerve communication and stimulation of the standing vasoconstriction reflex. This limits venous blood pooling and increases orthostatic tolerance. Celexa and the other serotonin reuptake inhibitors are known to increase norepinephrine release to varying degrees.

Hey I'm there with yah. The last few days have been a trial, emotionally, physically and so on. I went to my primary yesterday and he was so nice that I was apologizing for being a problem child and it's been a few months (I think) since I saw him last. Usually I get the it's as good as it gets or were running out of things to try. And I know that there are only so many treatments that they have for us, so it's not like he's lying. Just being bluntfully honest Sometimes it's hard to take because I want a better quality of life. Who wouldn't! I know were not asking for anything unusual. Everyone wants a good quality of life, it's just harder for us to get. My treatment has changed over the last month and I have felt really bad for the past week. He was very nice and let me go over to the hospital for fluids. I didn't feel good right away but after about 6 hours, I noticed a huge difference. I wish I would have begged for them last friday or no later than monday. Everyday counts! Hang in there! steph

Danelle - thank you for the support today, needed it

Please forgive my first 3 paragraphs as I'm angry and frustrated today but can't help myself for saying it What's up with these docs. Well the ones that actually get some educations from some of the research hotshots are told that we just need water and a pat on the head to make us feel better (that's what's known in the medical profession as reassurance and lets move on to the next patient because they don't know how to help us.) Because the research doctors only see us for a day, a week or maybe at most a month. They really have very little idea, the **** we endure and how our symptoms change over time. So hopefully in the next 20-60 years (I'm not feeling optomistic today) the medical students will get a better education. Oh yeah, guess that would mean they need better teachers. Oh yeah, we don't have that yet. We're still sitting in the dark ages of medicine. Some doctors say that stem cell research will be the possible cure to our problems, oh yeah America isn't allowed to do stem cell research. Well Go Europe! Can you tell I'm having a bad day, one of those moments of anger about the stupidy and ignorance of others (namely doctors that have a decade of medical education that don't have the first clue because they can't stop and take the time to figure things out or listen to the patient!) On a lighter note - JustMe- you are a wonderful person. Can we clone you several thousand times. I nominate you in charge of educating family, friends and significant others that are suppose to be close to us for better and worse. Yes, I've noticed that doctors take more time and take us more seriously when someone is there to help represent us. It's easier to believe 2 people over 1. Furthermore, as a POTS patient and being under the stress to remember everything that I suffer, I often forget what the main reasons I go to my appointments and forget to say half the things that need to be. I try to always write them down and take them with me. Although I have been known to walk out of the house and forget my list on my desk LOL I think that all spouses and families should read through the boards at least once, just so they know what their hearing from one is actually being said by many. steph

Oh one more thing. Because this is an area that I have problems in, like today. If you get desperate/dehydrated IV fluids are a quick way to replenish your system. I struggle after my menstrual cycle because my flow is so heavy. I'm actually going to the doctor today for this problem. Just make sure that you have a good primary care doctor to back you up and give you what you need.

Plenty of water, gatorade, (actually my doctor recommended the sports drinks like Lance Armstrong drinks ) When things get bad you can put a packet of salt in your gatorade. A very low dose of florinef or midodrine (proamatine) is suppose to help with this problem. You need to be careful with coffee. It is very helpful, they recommend 1-2 cups a day as a vasoconstrictor. I have found that it depends on what brand you drink as to the effect you have. I pretty much know what brands of coffee will cause me to have tachycardia, others will not. It's a trial in error kind of thing Good luck and have fun! steph

1) I can?t answer fully. I do know that you need to be careful because of medication sensitivity that many of us have. So tell the anesthealogist this and hopefully you?ll be set. 2) I can?t answer fully. You need to make sure that you don?t have MVP or other heart related problems or you might need an antibiotic to be safe with dental work. Again see answer for number one, we are chemically sensitive to medications. 3) According to the research, this is not a fatal disease! Serious complications? I believe there are over 60 documented symptoms of POTS, some of them are not to pleasant. If they can manage you with medication, diet, sleep and just plain getting to know what your triggers are; you can improve the quality of life. If you had Shy-Dragers that is fatal, but they say it is very slim to go from POTS to that diagnosis. 4) That?s for the docs! 5) That?s for the docs too! But I was put on a magnesium supplement, just didn?t tolerate it. 6) If you have sinus tachycardia from POTS, we?ve been told that an ablation can make things worse by solving the tachycardia and leaving you with extreme hypotension. You would have to have an EPS study to see if this is the answer for you. Another one that is left best up to a cardiologist to answer. I don?t know what your complete diagnosis is. 7) Definitely YES! The heat makes POTS symptoms unbearable. You should avoid saunas, hot tubs, hot showers, hot weather, extreme temperature changes. Kicks my symptoms up to high gear! 8) Good question for the cardiologist. But I was clocked at 160 J When I had my very first episode (in a hot shower) I was much faster than that, If I had to guess I would say about 200. I have had many PVC?s, PAC?s and a run of V-tach. When I first started with POTS symptoms I would have a problem when I was trying to lay down for bed where my heart would just take off up to 160bpm. It was so uncomfortable and I wouldn?t be able to sleep. That problem has been fixed with my beta blocker. You need to be careful though, are you sure that it is sinus tachycardia. Many rhythms, especially above 200 bpm can be dangerous or even life threatening. 9) Glad you asked about shoulder/neck pain. It?s been an issue for almost as long as my joint pain. The doctors use to tell me that my muscle spasms were related to stress. NO, I know better than that now. I used to just have muscle spasms in my upper neck, back, calves, hands and feet. Now I get spasms throughout my back, hips, buttocks (ok, pretty much every where.) It?s been painful to stand for the past 4 days they have been so bad at times. My shoulders are constantly in knots. 10) I suffered for over a decade with severe joint pain, until I saw Dr. Grubb. He put me on Neurontin and it has helped with several symptoms and completely takes away the joint pain. 11) I do very well with IV fluids, in fact better. 12) *I do get scared to be alone, especially when I?m sick or really symptomatic. If my kids are gone to their dad?s house and I?m alone, I get a bit nervous. I usually call someone and let them know that I?m home sick and I may need to go to the hospital and make sure their available to me. I also have called my ex-boyfriend a few times (that is harder than I can ever begin to impress upon you, but he knows better than anyone that I know, what this illness is.) 13) I have been afraid of dying with this. Sometimes I think that the doctors are wrong and that I?m going to be one of the casualties. I was getting my IV iron today and I had the worst belly pain you can imagine. I thought that I was going to let out a scream it was so bad, but it finally past and I didn?t say anything. I think you build up a tolerance to pain and symptoms with this syndrome. 14) I get chest pain, shoulder pain, pain in my arm pits that wakes me from a dead sleep. I get a pain in my back sometimes that makes impossible to take any kind of a breath. I?ve had pain radiate up to my face. 15) POTS is finally recognized as a disability but beware that you have to fight for it. Get ready to resubmit many times to qualify. There are horror stories about disability, not just with this illness though. 16) Hope this helps a little bit. I?m just a patient with my own experience for what it?s worth.

Danelle I will be watching for your list of questions and I'm sorry that you didn't have a good experience with Dr. Grubb. steph

Please list all of your questions. We are not doctors but many of us have been through the ringer, so keep in mind that it's just advice and we may be off base but you should get a general idea. I'm sure everyone would be happy to help out. I'm sorry about your appointment, I know that you needed information. Don't give up and chin up, let's see if we can help. steph

Here's a few sites for you to check out. http://www.hypermobility.org/ http://www.ednf.org/ http://www.kumc.edu/gec/support/ehlers.html

This is going to be hard since I've been suffering since last night with it. Brain fog is very real. It is a horrible symptom with many causes. I used to think that it was because I wasn't getting enough oxygen to my brain from my anemia. I can experience complete forgetfulness, blurred vision, sometimes I feel like I'm drunk, inability to talk, slurred speech, tripping over or twisting words, can't concentrate, confusion about what I'm doing or saying. I think when I'm at work and this happens, it completely drains me physically trying to focus.

I only take 12.5 mg, although they wanted me to take 25mg. I think I'll stick with where I'm at. steph

I hate this symptom. I can't even climb a flight of stairs without GASPING for air. I used to be very physcially fit. I love to hike but am afraid to go because I can't breathe. I can't even shoot a game of horse anymore and we know that's not strenous. Sometimes when I'm sitting I will also find myself breathing more rapidly. Two different symptoms.

I'm with the rest here. It's not a good idea. I donated blood before I knew what I was dealing with, I was weak for a couple of months. Now I'm anemic and they would never take my blood knowing what I have. It's a nice idea but it's not worth it. There are enough healthy individuals out there that can do this. If you want to give, maybe your time volunteering would be great. I used to teach first aid and CPR for the red cross and it is such a great feeling of satisfaction. They also need volunteers for special events that take place during the year of you can get certified. So there are many other ways that are healthier for you to help out. steph

sorry thought I had attached these too My personal favorite http://home.att.net/%7Epotsweb/POTS.html I love reading this story http://www.cfids-cab.org/MESA/Hillenbrand.html http://heartdisease.about.com/cs/womensiss...ysautonomia.htm http://www.mc.vanderbilt.edu/gcrc/adc/oi.html

I'm sorry that your going through this but I'm glad that you found this website. I personally see Dr. Grubb at the medical college of Ohio and he has been wonderful. He is especially great to see when your just trying to sort it out. I believe he sees more patients than anyone in the US. He's more familiar with treatments and he sits down and explains all of your symptoms and why they occur. When I first started to see him I was about to leave my job because I didn't think I would make it through one more shift. I had to stop taking classes at college, I couldn't even think. The abdominal pain would be so bad sometimes, my gut felt raw and it would be hard to even walk. I had been through a few different beta blockers with not much luck because they made me bradycardic or just wanted to sleep 24/7. Anyway you should check out some other websites I know your older now but I had a good laugh reading some of the simplistic explanations of symptoms. http://www.dynakids.org/index.jsp C:\WINDOWS\Desktop\POTS\Postural Orthostatic Tachycardia Syndrome, Patient's Report.htm http://www.ndrf.org/aboutndr.htm

Hey guys The NDRF puts out a great pamphlet that my cardiologist shared with me when I was first diagnosed. If you call them they'll send you one. I think that Grubb hands out many pamphlets that are even dropped off to him.

That is a very sweet and generous deed! I'm very happy for you It still amazes me sometimes that there are actually great people out there, with todays society. This website has helped make me a believer too. It's been nice getting to know everyone and their sincere thoughts and willingness to help.

It makes complete sense to me that emotion can be as screwed up as the rest of us, I don't think it just stops at the physcial aspect! I think we all know that each one of us can tend to have some pretty weird symptoms or very similar symptoms; no two of us are alike. And I'm always willing to agree to disagree with no hard feelings Here are some interesting links if you have the time. But check out this web page please http://www.howstuffworks.com/brain.htm/printable The next web link is very technical - Skip to the last paragraph under sensation, perception and feelings and continue on to the next paragraph Experience. http://www.drweitz.com/scientific/brain.htm Emotion - Emotions are really neuropeptides (60 discovered to date) which attach to receptors and stimulating an electrical charge in neurons. http://www.ecsd.com/~rhhedgz1/brain.html

Thank God, someone knows what I'm talking about. Yes, it doesn't happen very often and I finally thought of a better word for it; rocking back and forth. It usually starts with my head and then my body. Thank you for your reply steph