deucykub

Hi, Julie: Hang in there. I'm so sorry that you are feeling frightened. Even if you are diagnosed with EDS Vascular Type A, remember that knowledge is power!!! If I understand and remember correctly, the vascular complications, such as dissection, are much more dangerous to those who are undiagnosed prior to an incident. If this is a reality in your life, it is a very good thing that you are recognizing this now and seeking a diagnosis. You are empowered because you will know to take certain symptoms very seriously, and doctors will respond promptly to those symptoms to keep you out of harm's way. I know it's not much in the way of feeling more secure, but you are an amazingly intelligent and strong woman, and those qualities will be major assets to you in preventing serious complications should you receive this diagnosis. You will be in my thoughts. Please keep us updated, and don't hesitate to "dump." That's what we're here for!

Another little tip... When people tell me how "great" I look, I've started saying, "That's the one blessing of this disease. I may feel miserable, but at least I still get to look good!" We both laugh and move on, and it seems to validate that I am feeling sick without getting defensive. Just a thought!

Hi, Kwalk: I think a lot of what you are going through is the "getting used to POTS" phase. Our lives are so very different from everyone around us, both in that we feel pretty crummy most of the time and that other symptoms most people would think merited a trip to the hospital simply are our everyday. I have a lot of the same problems with sleeping. I used to take Flexeril to knock me out to help me with my Fibromyalgia sleep related problems, but POTS has made even that powerful muscle relaxer completely ineffectual for sleeping. I also have the same spinning thoughts until my body just seems to finally collapse. How many times can your brain sing the same song over and over again???? As an example of the symptoms we simply put up with... I went grocery shopping yesterday on an extremely symptomatic day (I'd gotten busy and forgotten to refill my meds. Dumb, yes?). Anyway, by the time I get to the check-out line, I am literally reduced to sitting on the floor: nauseated, dizzy, heart racing at about 160, chest pain, and couldn't breathe. Of course, my luck kicks in, and I hear the person in front of me say, "Um, this should be $3 less." Oh no... shoot me... on goes the little overhead light to call the manager. Delay, delay, delay, and I"m just hoping to keep from collapsing (I'd stood up by this point because I had to move the cart forward). I even considered handing the lady the $20 bill I had in my wallet and saying, "listen, I'm really sick and need to get out of here, will you take this $20 in exchange for dropping the issue and letting me check out?" I didn't, but 30 seconds longer, and I really would have. Those symptoms would make anyone stop in their tracks and dial 911. Me? I went to my car, cranked the AC, and reclined my seat until I could see straight enough to go home. I guess what I'm trying to say in a POTSy indirect way is eventually you just kind of get used to not worrying about the symptoms as much any more. You start to learn your body's quirks and ignore the symptoms. It doesn't make the symptoms better, but it does take the anxiety out of the picture to a much greater extent.

Thanks again to everyone for your replies. EarthMother, I don't do so well on the floor but can last a pretty long day lying in bed with my laptop. That must have been incredibly difficult to leave your career. I really feel for you. It's so difficult to not have control over that most basic (and fulfilling) aspect of our life. Mkoven, great advice about trying out the chair first. I really should do that; although I think the closest store that actually has the recliner is in NYC, about 2 hours away. "Hi honey, can we go to NY?" "Why?" "Um, I need to try a chair." That would be interesting.... hee hee DancingLight, that's too funny. I think I found those links because I am just that completely and totally bored! Although I did research products for a while for a dot-com company, which might have honed my digging skills a bit.

Hi, Cat Lady: I'm a little concerned that your workplace is asking you for a list of your limitations. They are going the formal route, as opposed to the "let's talk about this and figure out what we can do together" route. When my workplace went the formal route, it was because they viewed me as a potential lawsuit instead of a person looking for help. I would recommend before giving them a list of limitations (I'll explain what that is in a bit ) that you talk to an attorney and ask him/her to walk you through this process. Your workplace doesn't need to know you have an attorney, but trust me, your workplace has one and is getting advice from them. It is your right to have someone advise you on this very, very complex process, and I can't encourage you enough about how important it is to understand from a professional who is on your side how this process works. The second thing I would recommend is if after a week or two they seem resistant to help, start looking around for a new friendly workplace. AFter 20 months of fighting to get help, I am finally taking this step, and at the start, I am informing them about what I need to work. There are a lot of compassionate people out there who know that having limitations doesn't mean you can't do a job. So far, I am receiving positive responses from employers about my needs. If you find a friendly workplace in advance, you can move to the new job, or at least have leverage with your current job if they want to keep you! Limitations... oh what a joy. Legally, a workplace with 15 or more employees is required to provide accommodations if you have a disability (keep in mind this is a totally different law than FMLA and you are covered by it immediately). A disability is defined by the ADA as "Has a physical or mental impairment that substantially limits one or more major life activities." Major Life Activities * Examples of major life activities listed in the Title I regulations include caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working. * Other examples of major life activities include sitting, standing, lifting, and mental and emotional processes such as thinking, concentrating, and interacting with others. Below is the list I gave to my workplace from my doctor - WARNING - THIS WAS TOO MUCH, BACKFIRED, and CONVINCED THEM I COULDN'T WORK. I had given less information previously, but they kept illegally pushing for more documentation. First they thought I wasn't sick enough; then, they thought I was too sick. But anyway, it gives you an idea of what limitations are. Deucykub?s specific symptoms related to POTS are as follows: 1. Her persistent symptoms include disabling fatigue, nausea, memory and cognition difficulties, chest pain and tightness, cyanosis on exertion, and sleep difficulties. Her resting heart rate is higher than the average for her age group and is often tachycardic, exceeding 100 beats per minute. 2. On sitting for approximately an hour, in addition to her persistent symptoms, Deucykub symptoms progress to an increased tachycardia, with heart rates as high as 120 ? 125 beats per minute, moderate shortness of breath, acrocyanosis due to blood pooling (feet, legs, hands, and lips), palpitations, moderate nausea with some vomiting, disorientation, dizziness, diaphoresis, shakiness, and increased chest pain. If she remains sitting following the development of these symptoms, they will continue to increase in severity. 3. On standing, Deucykub immediately develops progressively worsening symptoms that include, in addition to her persistent symptoms, tachycardia averaging 140 beats per minute and frequently exceeding 160 beats per minute, severe shortness of breath, palpitations, severe nausea with some vomiting, gastrointestinal symptoms, severe dizziness, weakness, darkening of vision, black outs, ringing in ears, acrocyanosis due to blood pooling (feet, legs, hands, and lips), imbalance, shakiness, and mental confusion. 4. On standing for approximately 5 to 20 minutes, Deucykub develops Neurally Mediated Hypotension with severe presyncopal symptoms. Her blood pressure drops significantly, often as low as 70/40. If Deucykub remains upright after this blood pressure drop, she will faint. However, Deucykub knows to lie down immediately if this should occur to abort the oncoming faint. She has not fainted since the summer of 2000. Due to these symptoms, Deucykub?s Major Life Activities are substantially limited as follows. Sitting: Deucykub can only sit for approximately an hour before becoming symptomatic, experiencing those symptoms described in number 2., above. Following the development of these symptoms, Deucykub must lie in the supine position until they are alleviated. If she can lie down immediately on becoming symptomatic for 5 ? 10 minutes, she can return to a sitting position for approximately two additional one-hour periods before she needs to recline or lie down for an extended period of time in order to recuperate. The longer she is sitting the worse her symptoms become. Standing: Deucykub becomes symptomatic immediately on standing, experiencing those symptoms described in number 3., above. If she lies down at the point those symptoms occur, she can alleviate those symptoms again in about 5 ? 10 minutes. However, on standing for 5 ? 20 minutes, Deucykub develops Neurally Mediated Hypotension as described in number 4., above, which would result in syncope if she was forced to remain standing. Following the development of these symptoms, which are even greater in severity, Deucykub must lie in the supine position for several hours, usually sleeping, to fully relieve her orthostatic symptoms. Walking: Deucykub experiences the same symptoms walking as she does standing (please see above). Walking also worsens her tachycardia, shortness of breath, and fatigue and results in hypotension. Approximately 100 feet of walking by Deucykub results in the shortness of breath experienced by a healthy person after 30 minutes of vigorous exercise. Deucykub is exercise intolerant, experiencing an exaggerated decline in her health for days following periods of exercise. However, we encourage her to exercise as tolerated to help avoid deconditioning. Breathing: When in the upright position, Deucykub experiences severe shortness of breath to the extent that her original diagnosis was severe, persistent asthma. On extended testing, Deucykub was found to have mild to moderate asthma, and the severity and duration of her shortness of breath was caused by POTS. The shortness of breath she develops in the upright position is exacerbated by any kind of exertion, including such limited activities as talking and walking. Personal Care: Because Deucykub becomes increasingly symptomatic in the upright position and on exertion, she is unable to shower. Deucykub bathes when she has the energy to do so but this exertion severely fatigues her, requiring a varying period of rest afterward before she can start her day. Because of the exacerbation of her symptoms and the limited time she is able to stand, Deucykub cannot prepare meals more complicated than pouring a bowl of cereal or microwaving a pre-prepared meal. When she attempts to prepare a more involved meal, she becomes severely symptomatic and again must rest in the supine position to alleviate her symptoms. House Care: Because of the symptoms she develops in the upright position, Deucykub is substantially limited in her ability to perform most household tasks. She cannot fill the dishwasher in one attempt due to the concomitant symptoms on standing. She can vacuum one room in her household before becoming too symptomatic to continue. Laundry can only be completed in multiple steps over multiple days: sorting her laundry on the first day, washing and drying a load the next day, folding the laundered clothes the day following, and so forth. Attendance: Due to the disabling nature and severity of her symptoms and fatigue, there are days that Deucykub will not be able to work. However, with a flexible schedule and ample teleworking, it is my hope that she will soon able to return to an 80 hour bi-weekly work period as detailed below. Reviewing Deucykub?s position description, it is my medical opinion that she is able to perform the essential functions of her position with minimal accommodation. Areas where she requires accommodation to perform her job follow; however, she is fully capable of performing the duties listed in her position description. 1. Extended periods of sitting ? this can be accommodated by allowing Deucykub to telework from home in a reclined position and granting periods for her to rest and lie down. Her ability to work in the office is quite limited but would be enhanced by her having easy and discreet access to a recliner in her work area. 2. Standing ? Deucykub should not stand for any extended periods in the workplace. 3. Scheduling ? Deucykub?s ability to work varies from day to day. Her symptoms are currently quite severe and can develop even after a few hours in a reclined position. This limitation can be accommodated by granting Deucykub a ?Maxi-Flex? schedule, which as I understand it, allows her to work any hours between 6 a.m. and 6 p.m., Monday ? Friday, and keeps her from having to use leave if she completes 80 hours within a two-week period. 4. Driving ? Deucykub should avoid driving a vehicle for periods exceeding 30 minutes and may require alternate transportation for longer trips. 5. Time to complete tasks ? Due to her symptoms of fatigue, mental confusion, and cognitive difficulties, Deucykub may require additional time to complete tasks; however, I do not anticipate that her ability to do so will be delayed to the point that it will negatively impact her workplace. -------------------------------------- .... Anyway, I hope that will help give you an idea of what they are looking for. Again, don't go so severe that they say your condition can't be accommodated. It's quite a balancing act! Really, really, really PLEASE consider talking to an attorney. I am hoping for the best for you! Please keep us updated on your situation and how things are going at work.

I have a somewhat similar story that might interest you. I was recently told by my Occupation Physician that he thought my workplace played into my severe POTS exacerbation, but it was not a direct cause ? effect relationship, but rather the state of my health was indirectly linked to my workplace based on my personal circumstances. He thought that when a doctor placed me on a beta-blocker back in 2002 or 2003 that I was already starting to exhibit signs of early POTS. Then, in 2005, after a few months exposure at my new workplace, a mold or bacteria caused an asthmatic response/lung disease that spun out of control because beta-blockers (particularly the non-selective beta-blocker I was on, Propranolol) severely exacerbate asthma. When I was diagnosed with asthma in April 2005, my doctor immediately discontinued the Propranolol, which was medically the correct thing to do since asthma can cause loss of life. That same doctor thinks the Propranolol was keeping mild POTS in check, so when that was discontinued, the POTS then began to spin out of control. While my asthma was improving off the Propranolol with other significant medical intervention (prednisone injections and pills, large doses of two daily powder-type inhalers, aingulair, and emergency inhalers), the POTS got worse. The workplace did not directly cause POTS; however, it forced me to discontinue medication that had been controlling early POTS, causing the rapid decline in my health due to POTS. My doctor believes the fact that my asthma became well controlled, requiring only the emergency inhaler on the rare occasion now, and my severe coughing stopped after being out of the workplace (I haven't worked in the office since May of last year) supports that the workplace was the trigger for the lung disease in the first place. Now, it is his opinion that the only way for me to reach ?maximum medical improvement? is to begin taking a cardiac-selective beta-blocker, which interferes much less in asthma, since the asthma has improved to the point that the risk is less to my health. However, if I go on any type of beta-blocker, he wants to me to stay out of that building (I went back to him recently to try to get back to work) because that will likely worsen the lung disease, increasing the risk to my health, particularly while on a beta-blocker. The way he put it was, ?I don?t want you to have a severe attack and end up in ICU on a respirator.? Pretty scary words? This doctor also said that while there are some tests for problems in the workplace, like leaks, asbethos, etc, many problems can't be detected by standard testing because there are just too many variations of what a person can be sensitized to. Apparently testing for allergies/sensitivities to mold and bacteria is quite difficult because the properties of each are widely changed just from the environment in which a colony grows, so even finding the ?colony,? growing it in a lab, and then testing me could provide false negative results. I guess my advice would be if you continue to experience problems that are worse when you are at work or after being exposed to your workplace, you might consider asking your doctor to recommend a good Occupational Physician!

I have no idea on this one but am wondering if a migraine can manifest that way? My thoughts were leaning this way because you mentioned your daughter could only see colors... I do hope she feels much better soon! Please don't give up hope. POTS is a roller-coaster with good days for a while, going up, up, up, and then suddenly you've reached the top of that peak and come screaming down. For me, the progress I make, getting better a little each day, seems to give more momentum to get out of each medical slump faster. (I really shouldn't try analogies. I'm just awful at them! )

Hi, ajw4055. Don't panic about your student loans. In fact, don't even worry about them. My school tried the same thing when I medically withdrew from graduate classes. They told me because I was no longer taking classes, I had to return the money. And yep, it was already spent on living expenses! I was really panicked, so I called around to both the Department of Education and to my loan provider. What the school stated was absolutely false. Now, on the subject of repayment because you are out of school. There should be a six-month grace period before you have to start making payments. After that, you can file for a financial hardship deferment, a disability deferment, or an unemployment deferment (does it sound like I've done this before? argh...), depending on which is applicable. I've never had a problem getting a deferment, and it postpones your payments for an additional year. In fact, I'm in a financial hardship deferment right now because my employer wouldn't let me work. I'm so sorry your educational plans have been delayed. I know how frustrating that can be. I do have to say, though, your school did not treat you very well. I'm angry in your stead that they would do so little to help you and showed so little compassion. Those type of hurts do heal eventually. Don't let ignorant people get in the way of your right to an education. I'll be pulling for you!

Kitsakatsa, the same thing happened to me! My pharmacist started explaining the side effects of the drug to me, and something just wasn't right. I looked closer, and ta da, Midrin. I told my pharmacist that this was not the right drug. He didn't think I was right but called my ANS doc to confirm. Yes, it should have been Midodrine... scary moment!

I knew there was a reason I liked Macaroni Grille! Thanks for the list - such great info!

Hi, Summer: Welcome to the forums! I hope that your doctors are able to confirm what is causing your health troubles quickly. It sounds like you are on the right path! I don't really have much to add, and it sounds like you are less concerned now with the previous posts. POTS will rear its ugly little head even if your resting heart rate is high. It's persistent that way. Also, if you do feel anxious, you are always in control and can stop the test at any time. The same goes for if you start to feel too sick. I ended my test about 25 minutes in when I started to feel too sick to stay upright (my blood pressure was dropping rapidly). Had I stayed upright I would have fainted. You'll do great! Please let us know the results of your test and how you are feeling afterward. Best wishes!

Hi, Meg: What I have done to encourage understanding is learn as much as I can about POTS/dysautonomia and its mechanisms. Then, when I am symptomatic I try to blend in a little of the "why" with the "how" I'm feeling when I talk to my husband. That way he can understand why I look fine but feel so awful. I also try to relate stories in the news to him and explain how they are similar to what I am going through. Two examples: 1. The Wiggles lead singer/dancer quit the group because of orthostatic intolerance, much like if not exactly POTS. It helps my husband to understand that if someone successful and motivated can be knocked down with this, then I can still be the motivated person I was in spirit and yet struggle to work and do fun activities because of illness. 2. My Dad related a story from the Kennedy Space Center (where he worked until retirement) where a man, harnessed for safety, fell off the Vehicle Assembly Building (the HUGE grey building with the American flag and NASA symbol painted on the side, shown in all the shuttle coverage). When they finally reached the man, dangling about 150 feet off the ground, they found him unconscious, which was not supposed to happen. They later had a volunteer test the harness, and sure enough, he fell unconscious as well. They determined that the harness around his leg was cutting off his blood flow to his brain. I used this story to explain how the blood pooling in POTS reduces blood flow to the brain. It helped him (and my Dad) to have this physical accident related to what is happening (invisible to the outside world) inside of me. I've learned not to hit him over the head with it... just small doses. Over time he has come to understand and empathize more and more.

Hi, Minnie. Welcome to the forums! I'm sorry to hear that you have POTS, but getting a diagnosis can be freeing in that you can now start treating the problem instead of spending all that energy simply trying to put a name to why you don't feel well. That is truly fantastic that your doctors were able to diagnose you so quickly. Two questions: 1. Did your doctor prescribe salt and fluid loading? If high blood pressure is not a problem, adding a lot of salt (between 4 - 10 mg daily) and 2 liters of fluid minimum each day can be very helpful. I think this does more to help my POTS than any of the medications I have been on or am still on. 2. Has your doctor pursued cardiac testing (echocardiogram and electrocardiogram) to check your heart for any additional problems? Swelling in the ankles can definitely be caused by POTS (although I don't have this symptom, my legs just turn purple), but it can be a serious medical sign as well, such as edema from congestive heart failure. Since you have POTS, it is mostly likely NOT the latter, but it would probably be wise to rule out other causes before attributing the swelling to POTS if you haven't already. Take care and best wishes!

Thanks for your reply, mkoven! How do you like the "perfect chair" in a workplace setting? It looks like it reclines as a single unit, with the feet going up as the head goes down. Do you find this awkward at all? That's the other chair I've been looking at, but I'm unsure about that particular feature. It's so incredibly encouraging to hear that a reclining chair has helped you work! I'm going nuts at home; working is my life, really. I don't have an "arts & crafts" or "gardening" bone in my body, so I pretty much just keep up on my field and watch movies all day. Your story makes me believe this is really possible! I plan to buy my own, too. I've already been the route of asking for help, and that failed miserably. At the time, I couldn't afford to buy one myself because I had already lost so much from missed work (love those Catch-22s). My poor husband just about fell over at the price, but when I pointed out that, without the chair, we were losing my entire salary, he relaxed a little. I've also been searching around for good laptop desks, too, and the best one I've found is the AirDesk. It's had a lot of good reviews. If you ever needed to work on a computer from a reclined position, something like this might eliminate the neck strain you experience: http://www.airdesks.com

Thank you for your reply, flop, and for the suggestions! My Dad uses one of those huge, overstuffed recliners (I call them Grandpa recliners)... can't you just picture that in an office setting? You did a great job explaining the executive chair by the way. I knew exactly what you meant. I'm hoping to find something that has an extendable leg lift - a one-piece kind of unit, so that my legs can tilt higher than my center of gravity (the nicest phrase I could think of to say "rump"). There doesn't seem to be much out there. The one thing I've found so far is this (picture below), and it's really pricey. (If I have to, I'll pay it so that I can get back to work, but if something less expensive is out there, that would be wonderful!) Oh, I forgot to mention, I get really symptomatic just from sitting upright normally. I can last an hour, maybe two, before being too sick to stay upright. That's why I'm searching for a recliner, because I am much, much less symptomatic that way, and can stay in that position for ten to twelve hours without problem.

Pat, did you ask him if he was volunteering? Hee hee. Eagleswings, that's so interesting! My doctor didn't tell me to eat salty foods, though. My body just craved salty things, and I'd eat McDonald's every day after school. When I was old enough to drive, I'd pull through the drive through and order a super-size fries. (I've now mentioned McDonald's in two posts... methinks I might be having a craving! )

Hi, Carinara: First, I have to say, your English is phenomenal! My husband teaches English Composition at the university level here in the US, and his students (English is their FIRST language) don't write nearly as well as you do! We are so far behind on languages that it is really sad. I took 3 years of German in high school, and all I can remember is a few phrases, and in a pinch, I could ask how to get to McDonalds. Anyway... sorry for the brief derail... Highly stressful situation affect me very similarly. If I get too excited, either way, I can't catch my breath, my heart rate goes wildly high, and I feel just awful. I am so sorry you experience this, too. One little help that I've found is having Clonazepam around for emergency situations. It seems to supress my overloaded autonomic nervous system enough to bring my symptoms under control a bit. Someone on this forum recommended Clonazepam to me about a year ago when I was really concerned about a high stress meeting I had to attend at work (it was a bash on Deucykub meeting - not fun at all). I didn't have any for the actual meeting, but after the meeting, I was incredibly ill. My husband had to drive me home from work, and my heart rate would not go down, even when I was lying down. I called my doctor and talked to her about Clonazepam, and she prescribed it right way (I am blessed to have an amazing doctor). It helped tremendously! Maybe that type of medicine might help you be able to live and feel again? The only thing I would recommend is learn what levels work best for you before trying it out at work. The first time I tried it before a business meeting - an interview no less - I was not on top of my game! A bit too much and you can get chatty and lose your train of thought. (lesson learned )

Mary P thought this might be a fun thread. I'll start with my Dad's favorite joke: What do you call a doctor who graduated last in his class? Doctor! 1. When I was 10, I started blacking-out every time I stood up (vision would fade completely to black, I'd get dizzy, my ears would ring, and I'd basically run into a wall and lean over until I could see and hear again). My Mom took me to a doctor back then, and he told me it was because I was tall and thin. Ha! I am the pioneer diagnosee of Tall Thin disease. 2. My Rheumatologist noticed I was short of breath from "just sitting up." I hadn't noticed and thought I was just fatigued. After a diagnosis of asthma, off I went to a Pulmonologist, who couldn't reproduce the asthma results. He sent me off to a ENT to check for Vocal Chord Dysfunction (where the vocal chords paradoxically close as you inhale). The ENT saw no evidence of VCD but did see that I was using the muscles in my throat excessively to speak, and he ordered breathing therapy. I told the Pulmonologist this and then said I would be starting therapy. He said, "Psychological?" Wait... what??? Where did THAT come from? LOL 3. This one is my favorite. I went with my Mom to HER doctor's appointment for a slip-and-fall accident at work (worker's compensation doctor). My Mom happened to mention that I had Fibromyalgia. This doctor... get this... he LITERALLY walked me out the back door of his office to a patch of weeds he was growing (?) in the back, bent down, plucked a few weeds out the ground, and handed them to me. He told me to make tea from these weeds, and I would be cured! Wow, how did this doctor with a shoddy office not make millions from his miracle cure??? Your turn... we've cried about them, now it's time to laugh!

I have awful problems with brain fog, too. I can get completely lost in the middle of a sentence or stuck on a word. I've poured cereal on a plate (caught it before trying to pour the milk!) and walked in circles in the kitchen trying to remember what to do next in the process of getting cereal (like a dog chasing its tail... round and round I go!). Of course, there is the inevitable placing perishables in the cupboard and non-perishables in the fridge or completely forgetting to put something away all together. My husband has learned to walk after me to make sure the milk is in the fridge or the gas oven is off. Bless him. I noticed something really interesting the other day, though. I had an interview, and my brain was working nearly perfectly. Answering questions wasn't a problem, and I even managed to throw in a bit of wit! One hour later, I'm home trying to tell my husband about the interview, and I'm back to being all over the place and stumbling on every word. Could it be that a higher flow of adrenaline during the interview counteracted the brain fog? If so, is that something can be achieved pharmaceutically?

That's great news, Kendra! How wonderful that your workplace has been so understanding and supportive. It gives me hope about my new job search. I work, or rather, worked, due to the fact my employer forced me into disability retirement, in contract management. I'm currently looking for a new job, and now that I know I have challenges in the workplace, I will be discussing those with each company right at the start. I've decided that I may not be legally obligated to disclose my disability but better that than to go through another battle trying to get help to work. My new standard is - how would I react if someone told me this. What kind of people do I really want to be working with, anyway? The answer is I want to be working with understanding, empathetic, and personable people. If they respond negatively to the fact that I have challenges, well, it probably wouldn't have been a great place to work in the first place!

Flop, you are such an insightful poster. I just wanted to second what you said, because I was thinking along similar lines. Endure, with the severe pain you are experiencing, your best bet is to go to a pain management clinic. They are very familiar with pain management techniques: pharmaceutical, physical, and alternative. You absolutely deserve to live a pain free life! (and as a former sufferer of chronic pain, you have my utmost empathy and support...)

That's too funny!

Hi, Mary: What a beautiful post. Thank you for sharing that with us. I've had symptoms since I was very young, too. I think they started after I was in a car accident when I was 10. I never fully fainted, but I blacked-out every time I stood up (vision would fade completely to black, I'd get dizzy, my ears would ring, and I'd basically run into a wall and lean over until I could see and hear again). My Mom took me to a doctor back then, and he told me it was because I was tall and thin. Ha! I am the pioneer diagnosee of Tall Thin disease. I've recently learned that several members of my Dad's family are orthostatic intolerant - one is even on disability for it. My Dad, who just turned 70 last year, used to faint as a kid, and his doctor at the time told him he had "low blood." Interesting... that doctor was probably closer to what was really going on than most doctors today!

I'm sorry - I have no idea what laws apply to education. Here is a link to a guide on disability laws, though. It might give you a place to start? http://www.ada.gov/cguide.htm Our union referred me to my attorney, but if you run a search for "disability discrimination attorneys" or "reasonable accommodation attorneys," you should be able to find attorneys in your area. I'm not sure about how to determine if an attorney is reputable other than to talk to him/her and maybe call your local Better Business Bureau and/or search his/her name online. Typically, I think attorneys that represent these types of cases practice employment or labor law.

I am back in the job market again. My previous job illegally forced me to retire on disability by refusing to provide accommodations (a 20 month battle). I am very blessed that as a federal employee my employer's pushing me out the door made me eligible for disability that is retroactive to the last day I worked. Now that my day to day battle with them is over, I can focus most of my attention on finding new employment. I actually feel more free that I have felt in ages! I am so grateful to all of you at DINET who helped me through that harrowing experience. Anyway, I would like to purchase a good reclining office-suitable chair that I can bring with me to my next job (ironically, I can afford this now because of being forced into disability...). The "zero gravity" chairs look really nice, but from what I can tell, they don't allow you to recline/incline the head and foot separately. Rather, it stays in a uniform position, and if the feet go up, the head goes down, and vice-versa. I'd like to find something that allows for separate control of the feet and head so that I can raise up the feet but stay in a more upright position at the same time. If you have experience with any of this, I would be most grateful for your input/advice. Many thanks!