Kitsakatsa

LOL Whatever. To correct both heartrate and blood pressure and to say that you are cured is like to not open your mailbox and think that you have no more bills to pay. This is such a deficiency to a dynamic process. My doc says that you can never ever heal or simulate a dynamic process and the best anyone can do is figure out how to bolster up a POTS patient, but its purely artificial and doesn't come close to being the actual pure ability. The first step to becoming more functional is to get that heart rate and blood pressure to its optimum level, the next step is to build tolerance for activity, the next is tolerance for stressors (such as exercise) and the next is to minimize the crash cycle. This is how he explained it to me. So, you may be at the beginning of the journey, but once you can reach the point you are at- you are on your way to a much better life. Kits

There have been two things I've taken that helps: Adderall and Provigil. I couldn't live without Adderall. Still though, I am exhausted most mornings- I don't know how you can deal with toddler energy!!! Sympathy!!! Kits

Church says Amen!!!! There is SOMETHING CRAZY about POTS. I have lost 13 pounds in one week, then gained it the next. I have lost or gained as much as 4.5 pounds in one day. The one thing that I find irritating is that by all nutrition sites and scientific calorie calculations, they tell me to eat 2000 kcal per day. I gain weight like a tornado if I go above 1300 and that is with daily exercise, 8 hours of work each day AND I had a metabolism measurement by a nutritionist that said I burn 1700 kcals per day if lying in bed. Believe me, I have tried 2000 kcals a day of healthy food and I was up a pound every day. Despite what they say, it is not about calories in vs calories burned- that is a bunch of bull crap. It is a dynamic process and there isn't anyone who can figure it out. Add POTS and it is an impossible puzzle. We have enough struggles, we don't need this one- but here it is. Sorry for the rage and the capital letters. I'm single and Valentines whole frikin' week (when did it become a whole frikin' week?!! Its supposed to be a DAY) puts me in a bad mood. People prance around work with their crappy flowers like they've been chosen to have tea with the Queen. Have they had a good look at their spouse/boyfriend because I have and I wouldn't touch that mess with a 10 foot pole....just sayin'.... OK I feel better now. Just 3 more days to go.... Kits

Kits I have a hard time napping unless I'm sick, but if I'm going to learn from anyone, it'd be my cat! How adorable. I'm glad you had a wonderful nap and the picture of cats and sunshine and napping made me happy. Aw, their names are Eleanor Rigby and Mr. World Bank. I'm so tense and they all they have to do is start purring and suddenly everything is just going to be okay. Aren't cats the best?!!! Kits

Did the folic acid make you nauseated? Kits

I am now a HUGE FAN of sleeping during the day. My alarm goes off at 6am and my lights are usually off around midnight. I am always exhausted but POTS for me means an overabundance of adrenaline and therefore insomnia. Well, today I felt really horrible (which I was kind of glad for, because I have a heart monitor on for the next week), and I came home from work. I was really nervous about missing a meeting, but my two cats showed me how they take naps and the house was full of sunshine and I had the most wonderful nap. I felt like I was making up for centuries of sleep. I have to say that it is really rare that I take vacations, but this nap beat out nearly all of the vacations I've been on. This was more incredible than anything (even shopping). I guess that you have to have moderation in all things, but I can say that this nap worked a miracle for me. I think they should be prescribed just like a drug!!!!! Kits

In reply, I would check for travel. That is a bit of a different ball game. You can usually call in sick at the drop of a hat, but to call in sick for travel that your company has booked and paid for will raise the boss irritation sirens fast. It is an important question that I would ask in the interview. With airline security measures being what they are you will likely have to stand in line, run to gates with luggage and your coworkers would not be able to use your ticket. I would be very cautious about travel if it is involved. About the firing question- that is a hard question to answer. On one hand, it is much easier to find another position (even within the same company) if you are not fired. If the job does not work out, you can cite that it was a poor job fit and some (good) Managers may even help place you in another position in the company. In the US, employers are prohibited from giving references over the phone to another company other than how long you worked, if you had a tardiness or attendance problem, if you were fired, and if given the chance they would hire you again. That said, come companies break the law. Also, companies are free to exchange more detailed info within the company. Being fired can actually get you banned from employment within the company for a period of time (its called non-rehire status). So, I would much rather be honest with how much I can work and move positions or reduce days than be fired. If you don't qualify for IFMLA, do let your Manager know about your illness so they can work with you to prevent sick days. The only advantage that I can see from being fired is I have been told that you cannot collect unemployment benefits if you quit. Before you consider this a benefit, you would want to double check to see if you would qualify for unemployment. I am uncertain of the requirements and length of employment that it requires. Hopefully this helps. I just don't think that POTS patients should sell themselves short and assume that they would be a burden to any employer. I would take a POTS patient any day over some of the employees that I have inheirited from other Managers. POTS patients tend to be thankful, diligent, patient, motivated and kindly. All of these are truly treasures to any employer, even despite the inevitable sick days. Kits

Also, forgot to say. I would file for intermittant FMLA as soon as you are able. Managers around here actually seen IFMLA as a relief because your employee can call in sick and it does not drag down your attendance standards. What is hard on an employer is having them not on IFMLA and having to enforce a sick call policy on them, knowing that they are sick. I can't speak for all, but us sickies tend to think of IFMLA as putting our Managers in a trap. I myself am on IFMLA and I had an employee with Orthostatic Hypotension on IFMLA- it's actually a relief for a Manager because they often times can get approval for a PRN. By the way. Have you thought about starting off as a PRN? Great way to get your foot in the door and measure out the company!! Hospitals are commonly hiring scads of PRNs for desk areas like medical records and patient account services. No guaranteed hours, but you can decide that AM whether or not to work! Kits

As a hiring Manager, I have the following advice: (I am assuming you are located in the US) The only question they are allowed to ask is if you can perform the duties of this job with or without accomodation. If you answer yes, it means that you are still entitled to accomodation and eligible for the position. Positions that include labor must list the physical requirements in the job listing. Pay special attention to those. I would apply, answer that question with a yes or no, interview as you normally would and accept the position if you are interested in it. I would not create extra steps or anything that suggests that you are dramatic. They are not allowed to ask you your illness history etc. I understand your anxiety, but employers handle accomodations much easier than you can imagine. What they really watch for, and makes them feel on guard, is if an employee shows signs that they are dramatic about things, easily offended, complainers, hard to train, or basically crazy. If I got a letter from a candidate about an illness, I would have my paperwork all perfect and I would hope to high heaven that they were not the most qualified of the group. Not because they are ill (Managers take that in stride because at one time or another, every employee is ill), but because they are making an issue of it, and if they are making this big of deal about it I would be afraid that they are gunning for a lawsuit or will terrorize the other employees into doing their work for them. I would also see it as a bit of a threat (I'm telling you I'm sick up front, so if you don't accomodate me- I'll take you to court). I know this is not your intention, but this is how it can be seen. If you are just absolutely worried about your illness, the most that I would recommend that you do is ask to speak with an HR representative for that company. They can be a resource to help determine if the job is too rigid, stressful or physical for your illness. Keep in mind that you shouldn't go into great detail-keep it simple. A good HR consultant will stop you from going into detail. Also keep in mind that they have a right to communicate everything you say to the person who would be your Manager. However, if I heard of a candidate speaking to HR about this illness and their concerns, I would tend to consider the playing field even for them. I wouldn't give them an advantage, but I wouldn't believe they were as threatening because the subject was approached in a mature and calm manner. That speaks volumes to employers. The other pieces of advice are just along the traditional lines of have a good resume- no mispellings. I would include any charity work that you have performed and describe your absence from working life as a "leave of absence". Look nice for your interview, be reasonable about the hours you can work-don't overcommit. Be positive in your answers, don't trash old employers, and let your personality shine through. After the interview, send a short thank you note. Most of all- have enthusiasm for the job. 9 out of 10 people that I interview are lacking it. I hope this helps. Best of luck. Working with POTS has its challenges, but its not impossible and many here on the forum are in the same position. Just try and put your fears aside. If the job ends up being too much, most employers will let you scale down or if worse comes to worse, you can quit and find a new one. Kits

Thank you, I am hoping that they can see what I feel. Isn't that our constant struggle? Yes, I have to admit its quite a sport of mine to internally giggle as I watch medical assistants struggle to find the BP. Physical therapists look at me like I'm coding. I once read from Dr. Google that there such as thing as "pulseless disease" and it is a type of vasculitis. I wonder if there are some common properties. Thank you for your reply, Kits

I thought I would throw this question out there. Has anyone had the type of heart monitor where they monitor you for two weeks? I just have a VERY thready fast pulse- no one including machines can detect a pulse or blood pressure when I'm standing up. Few can do it when I'm sitting down. I think this is common among us POTS patients and I wonder if these can detect us- or if it will just show every other beat etc. It's an expensive test and I don't want to ruin it. I also don't want a falsley low reading that will show as normal because a tech and the machine don't know what they are doing. We've all had experiences with that! I wish it was on today- I feel like death on a wasa cracker, covered in non fat cream cheese with a sprig of parsley on top! It should be on my doorstep tonight. You know how some conventional tests are not POTS detective, or POTS friendly? I'm wondering if anyone has had experience with this one. Kits By the way, thanks to everyone who contributed to my last post. I've since seen my angel doctor and I have snapped out of it. He called the other doctor a few names and it made me laugh. Now I can put the whole experience behind me. Your support helped bring me back to me.

One of the most miserable aspects of POTS happens to me WHEN lying down- I call it static, but I think it is really adrenalin sickness. In fact, sometimes I cannot lay down. I can feel my body struggling with the change in position for 10-15 minutes and the struggle lessens if I can get back to a recliner. POTS is a dynamic impairment. A doctor that thinks that it all goes away when lying down doesn't realize the recumbent effects of the disease. That makes the complicated even more complex. Kits

OMG!!! No! Mold causes major neurological effects. We kind of think that mine came either from a former meth lab or moldy apartment and we've been keeping an eye on news reports and stuff. We personally know two different families who had neuro problems from mold in their house. I would do a research search, do a google search, and then find out if your homeowners covers you and your illness and what it will take to help prove that it may have been from mold. There may be some action groups that you can utilize to help you. My heart sank when I read your post. What a trial you are going through. I'm glad you have somewhere to stay. I pray that angels are by your side and will help you with comfort and rest. Nothing is worse than anxiety and I hope you can find little rays of sunshine wherever they may be. Kits

Snort! MD: Most Dangerous with the lowest GPA. I love you guys. I feel particularly bad right now and its just making that appt all the worse. I tell myself that I cannot mourn the appt. I need to quit the pity party and move on. But this weekend I'm particularly sick. I went to Target a few hours ago and thought I would have to go curl up under a rack of clothes. I feel like I am just really overwhelmed with everything and I feel really panicy about the future. I'm still pretty spun around. I need to snap out of it. I should be a stronger person. Right now, I don't know how to get back there. Kits

My wonderful Angel doctor sent me to a Cardiologist because I am pretty functional, but every morning and sometimes days on end I feel like just walking across the floor is an extreme sport (break out the protective eye wear!!) and my heart rate is extremely fast and thready. I feel like there is a huge incline, it is nearly impossible to do anything and my heart rate is reflecting that my body is working extremely hard. At these times I am out of breath and fatigue out within minutes. This is concerning because most days I can work 8 hours, then come home and exercise on the Wii. On the bad days, I am back in bed within 10 minutes. So I land at this doctor's office and he comes in and says I would feel better if I lost weight, waving off with his hand my hour a day exercise despite feeling like crap and that i've really only been able to eat the BRAT diet for 6 years. Saying that exercise never results in weight loss (what?) and that I need to eat next to nothing (nice). I wonder if he noticed that I've been admitted for malnutrition- probably not. Then the jerk says that Pots is a great big huge problem, no one knows anything about it and that there probably is something wrong with my heart, but they will never fix it because Pots is a great big huge problem. He said that I need to quit my job, stay home and not ask doctors to fix me because I am stupid enough to hold a job and have Pots. Then he said that no one is doing research any more because Pots patients are not worth bothering with and they can't be helped. Then he said again if i have a problem with my heart, it doesn't really matter. He talked to me like I was 99 years old and terminal!! He said they'll put a heart monitor on me for two weeks if that's what my doctor wants and then said to follow up with him in 3 weeks. Like Heck! I wasted $30 on that appt, I'm not going to do it again!!! I know I shouldn't let these things bother me. I know I should be able to brush them off by now, but I was glazed over for the entire day following that. I emailed my angel doctor and told him what happened and said that perhaps the cruelest thing anyone can do to a Pots patient is to take away their hope for a better life. He called the Cardiologist a dork and said to follow up with him instead. I get to see him Tuesday. I thank the heavens every day that I have such a wonderful doctor. His email may me snap out of it. But I am mad, and mad at myself because the thought keeps running through my mind about the research. I know we are not terminal. I know there are doctors that understand quite a lot about Pots and have the world up their sleeve (my doctor included). But I'm haunted by the words of this man. Do you think the research has dropped off? Do you think the medical community is turning away from answers? Kits

I have a port. The hypertonic solution has burned out my veins (last IV=32 sticks, what was successful blew out). The port has been an absolute lifesaver. The surgery under MAC anesthesia was easy to get through with not effects towards POTS. The recovery was Rough Ruff Rough! I felt like they had implanted a swordfish in my chest. I even accused them of it, laughs all around. But that is what it felt like. If I was a drinking woman, I would have been plastered! Part of this may be because I had an attention starved employee who decided to act up and get all bizaro and I had to return to work the next day and do her work which included nonstop entering data with my right hand and the port is in the right side of my chest. Looking back, I should have stood up for myself and stayed home! Another unexpected thing is the pain two years later when the scar tissue started forming. It felt like stabbing pains for a few months. This is typical. Then there was the time when it decided to tilt and lean against a back wall, putting fluid in felt like salt water on an open wound. Apparently that can happen too. Perhaps the buggiest thing now is the cost to maintain. You have to get it flushed every month (6 weeks at the most) and pre-insurance, that is a little over $100 per pop. Also, before any dental procedure, including cleaning, you have to have an arithromycin RX going. Also, it has to be accessed when you need fluid= $100 vs and IV at $10. Another unexpected is that I thought it would solve all my blood draw problems, but the people that can access a port in the hospital are few and far between. I still get stuck a zillion times for blood draws. I also learned that you cannot do much weight lifting with your arms if you have one. You can still lay on your tummy to sleep, which is a good thing because if I sleep on my back chances are a cat will fly through the air and land their paw directly on it. OW! I agree, it really is a last resort. The infection risk is SCARY. I'm freaked out about ripping the wiring in a collission or something. I almost did it when we were out shooting and I tried a big new shotgun. I snuggled it up against my right lower clavicle and just as I pulled the trigger, remembered my port wiring and instinctively shifted the but of the gun to my armpit. The kickback was excruciating and I was purple forever, but at least not dead! For me, there were more pros than cons and I'm ultimately glad I got it because the picc lines are far more dangerous. It is not a light decision though and I've been told that mine at 3 years is good because sometimes they crack and the drum can only take a certain number of pokes. My goal is to keep mine 6 years. Kits

It is an incredible amount of hard work! I often think that if more people had POTS that the world would just simply come to a standstill because everybody would have to go lay down! It really seems impossible sometimes. I have bad days and I know what you mean. The progress is so very slow. Sometimes the smallest thing can be so exhausting and it would be funny, except that after a while of these things it can really drag you down. Its all one step at a time, no matter how small. I once belonged to a gym next to my apartment complex. For nearly a year I would walk there, not go in, and walk home. The 10 min walk was all I could do and I wasn't well enough to spend any time inside at all! Seems silly now, but that is where exercise started for me and it took a long, long time. I just know that for some people, things improve. I've heard it from others in this forum. Dr. Low said patients improve in the period of 3-5 years, if they do, and then it levels out and there isn't much improvement. I found myself improving at 5 1/2 years. Suddenly one day, the nausea started to decrease. Don't give up hope. It's like re-learning to walk. Kits

Hopefully the Florinef will make a big difference, but it takes time (at least a week) and its all individual. It takes quite a bit to keep me upright (0.4/day). I blindly followed my physician with that dosing and it has paid off in grand ways. If anything, give it an honest try. It has made all the difference for me. Before the Florinef, I could not sit upright in bed for more than 60 seconds. To even get diagnosed, I had to have special help to even ambulate and you can imagine how grueling the testing was. I couldn't tolerate sound, light, or food and I was in severe malnutrition lying in a dark room until I was admitted by my, then new, doctor. Florinef turned it all around and within 1 month I was able to travel by plane to Mayo. Two weeks after that I was working 3 hours per day and full time in another 2 months. It has been an absolute miracle in my life. I have had tilt tables on florinef that were normal and then tilt tables off of florinef later (went off all meds for a test) that had me right back at 155 bpm. I am here to testify that it works for some like me and I hope that gives you hope about your situation.. Kits

I live at high altitude also (mountains of Utah) and I know that I have hydration issues because the the higher the altitude, the worse I feel, the worse I feel, the more nauseated I am and the less ability I have to consume liquids without feeling they are too heavy on the stomach. I recommend softer fluids: sports drinks, tea, herbals teas. As always, salt consumption is very important even if it is not sunny outside. Thermotabs are excellent. Kits

Mine is absolutely necessary. I do get looks though. Its part of the mix. I use it on bad days. It is really how I can get into work some days. Otherwise, I'd be home. It is esp useful for events because you can park close enough to go back out to the car and rest. Kits

Sugar, we're goin' down swingin'!!! This is a GREAT question. I ask myself it every day. I should feel settled by being able to work FT (even though its miserable), but I'm not settled. I've had new damage in the last year with tonic eye and decreased hearing in my left ear. If I don't keep pursuing a better way of life and a more complete diagnosis, I'm afraid of that this will just progress. Every time you don't feel good enough to pursue a better life is exactly the moment you have to pursue it and for that reason. Kits

I love crochet. It's my favorite down time thing. It works best with a recliner some chocolate a purring cat red box movies fluffy socks backup chocolate diet coke snow outside warm inside Kits

I know. I've been there. You are NOT a hypo. Its hard. My heart feels for you. Kits

I wish I would have exercised more before POTS so I wouldn't be so concerned with it now. Its hard to handle! I am fluffier than I want to be, but I think I found what will work. I got a Wii for christmas and it is WONDERFUL! I can sit down and rest when I want and if that is 2 minutes in then whatever! There are lots of balancing exercises which are definately working so far. The only part is that there are alot of Yoga exercises that are not exactly POTS friendly. Too much standing! LOL! But it strengthens legs and core and those are great areas to build strength in order to get our blood going to right direction. ...although dizziness turns the Wii board into the Whoa board! But, aside from my laptop, it is the most POTS perfect techno thing I have experienced. Definately a great gift! Kits Is anyone else watching "The Bachelor"? Wow! Some of those girls are SCARY! Run Bachelor, Run!