Herdswoman

Best of luck, Hayley, and hang in there! Are you in the States? If so, get your MD's to advocate for you and push them to help make this happen. If nothing happens and they don't know why, they tend to blame the patient or worse, label them as "noncompliant". Remember, the squeaky wheel gets the grease. Squeak on, sister!

Aw, Julia, quit painting the bedroom when you're exhausted will ya? You don't want people to think you're related to me, do you, lol? Eek! Or is that where the party was? WOO HOO! Seriously....... I think we all have things like that........we know we have POTS, know we have limitations and we want to, strive to, be as active as possible. We all overdo and make bad choices for our health sometimes, because we constantly battle to balance the price we pay physically. Sometimes the price is higher than we expect, sometimes we don't care because the payoff is so great. Sometimes that sneaky, sneaky disease we have just is adding it all up behind our backs and then WHAMMO! POTS says "You owe me a full day - or two - in bed. OR ELSE!!!!! So why is it that we are -really meaning I am- so reluctant to just suck it up and rest? Get the remote, the phone, a jug of water and go to bed? I've had a few tremors (worse when tired) many, many brain fades (REALLY evident when pushing myself) and a lot of other symptoms when overtired. I really related to what you described as "the whiney phase" in the grocery store - whew! I'm not fit company for man nor beast when that happens. If I keep pushing, I'm sure to end up miserable, with more symptoms and then it's really hard to separate what's POTS from what's not. What has worked for me is to rest, rest, rest.......until I wake up feeling good one morning. Then I start over, see if my symptoms have resolved and see what weirdness life has for me that day. If I've done my job completely - meaning rested and rehydrated well - then I'm normal. Or, as my husband would say, almost normal. And the balancing act starts all over again. BOTTOM LINE: If we don't take care of ourselves, no one else will either. And when we don't take care of ourselves, we don't have the quality of life we want and can't care for the people we love the way we want. A big piece of this for me has been re-prioritizing. I quit work - and I've worked since I was 14. If the beds don't get made every day, that's OK. If the laundry piles up for a week, then it's a good thing we have plenty of underwear. We just thank God for big washing machines and that we have enough clothes in the closet to last. If the grass grows tall, I just don't cut it on "3", maybe I set the mower at "4" or in dire straits, "6." If the party is coming and the house is picked up, that enough. The food must be good and there must be enough chairs to go around. That's enough. The people, convesation and laughter will be great and that equals success. I really try to focus on the people I have in my home, second after that is the food. After all, that's what they'll remember. If I've overdone for a consistent week or more - especially outdoors - I'll end up with asthma attacks and bronchitis. Bronchitis means a big ol' POTS flare. I will ONLY do that for a major, major payoff.......like right now. This past week I helped my daughter show her horse at the County Fair: dust, lifting, carrying, dust, stepping up into the horse trailer, dust, helping other kids in the 4H club, dust, set up practice sessions, work with her during fair and for weeks preceeding, heavy lifting of jumps and rails, dust, hard work hooking and unhooking the horse trailer, dust and more dust. But I watched her succeed beyond our wildest dreams. So I sit here, on steroids, waiting for the pulmonologist to open his office so I can have my antibiotics. This is worth every bit of physical price. I mean, where else will I be able to watch my daughter grow up?

HELLLLLOOOOOO POTSPLACE! Amy Richcreek here, met some of you across from MCO at dinner at Ruby Tuesday's a month or so ago. Figured it was time to come out and say howdy on the board. Notice I am not using the name Tiger Lady, but my usual cybername, Herdswoman. I've made a couple of big steps the last month or so and I wanted to be able to share them. I'm actually kinda proud of myself, because I am learning to accept this disease on it's own terms and the fact that it dictates more and more of how I will live. I have been diagnosed for two years, but have had symptoms for eleven years. I've learned to laugh at myself and this disease, because crying just isn't an option. Well, at least not very often and certainly not in public. Humor is much better. Support is better yet. Love is the best. But if I'm not being particularly loved at the moment, I'll settle for a really bad joke. I'm a registered nurse of 20 years with a background in cardiac care (medical and surgical treatment) infection control and outpatient care. I once put myself on monitor when I was at work.....worked most of a 12 hour shift with a heart rate of 120-150, no symptoms, no problem. (Gee, that's enough to make me wish I was still in my 30's, hahaha) I quit working this past March and am currently transitioning into Long Term Disability through my private insurance carrier. I am also doing the Social Security Shuffle, but it seems the folks down in Columbus don't quite hear the same beat that I do, so it's taking some time. One thing that I found helpful was doing a little surgery while waiting for my disability to kick in for my heart. Of course, most pencil pushers haven't heard of POTS.........so it all has to go for medical review with Dr. I.N. Surance-*****. While waiting for the Dr.INS-W to google it up and read, I had my gallbladder out. The pencil pushers could understand that and I got paid for six weeks. I also sought treatment for my feet (heel spurs and inflammation that I'd been ignoring). Pencil pushers understood that, and I got paid. I would also recommend that this is the time to check out hammer toes, ovarian cysts or other female troubles, ingrown eyebrows, anything and everything that you've been putting off while trying to work. I also got a Handicapped Parking placard. This was HUGE for me. Not a huge blow, but a huge step. It's the first time I've ever written my name on the line marked "Name of Disable Person". But what a blessing to be able to use it when I know that I'm going to be doing a lot of walking or standing. (County Fair, anyone? For a week? While your daughter shows horses all day?) Also helps me to get on shuttles, etc. that are for handicap and seniors. I figured it only matters for me, how I feel and how I am able to conserve my strength for my family. I know I look pink and healthy - and I try at all times to appear well. If someone wants to judge me, they can have at it. If someone wants to confront me in a parking lot, I have a ready reply: "Can you see multiple sclerosis?" Now I never said I had MS, did I? But the autonomic principle is pretty much the same and people who are judgmental enough to open their mouths like that don't deserve much. I decided I'd need to grow a thick skin. Screw them. I have a wonderful daughter, Jessica, age 11 and a wonderful husband Tom. I have a wonderful mailman........oh, boy, can he deliver the mail! Actually, he is the husband of another member here and one of the first people I met when we moved to our new, smaller, easier to care for house just six weeks ago. Tom & I met Ron The Mailman and his good wife Julie at the dinner by MCO along with many other members. WHAT A BLESSING ALL OF YOU ARE!!!! Thanks to Michelle Sawicki for all her work! And Briarrose for coming to see Dr. Grubb or we wouldn't have met everyone. My hobbies are drag racing, horses, keeping up with my family and unpacking the mess of boxes we still have in our new house.

Genie, I have POTS and a pacemaker. But I did not plan on the pacer at all. Almost two years ago I went to the EP lab for testing, we found a tract that we thought could be ablated. Unfortunately, my AV node was severed and I am now pacemaker dependent. As a former cardiac nurse and RN of 20 years, I am continually amazed at the amount of people - coworkers included - who think that a pacemaker will cure POTS. The biggest benefit (besides keeping me alive, lol) is that my heart cannot go below 75 nor above 150. This seems to protect me from the most severest of swings in heart rate. DO NOT get a pacer unless the low heart rate is giving you trouble. I am only 43 and estimate that I will need 4 - 6 battery changes in my lifetime. I have no idea about leads......maybe 1-2 in my lifetime? Are YOU having difficulty with a rate in the 40's? Symptoms? You seem to be checking your pulse a lot. That can be good, can be bad. Good if you are learning about your body's trends and responses, bad if it makes you too anxious. There's lots of support and good advice on this board. Take care.