tinkerbella

Hi Kayjay, I always seem to find mine is always a lttle extra high in the the hospital also. the timing of the taking of the blood has a lot to do with it. If they were concerned they would have said something to you, at least i would hope. I do find with my pots and my neuro/pots spec. told me that myself and other pots patients don't have diabetes but often have blood sugar problems. she just runs an ac1 blood test to check out my blood sugars over the past 3 months and it will give her a average blood sugar level and it lets her know how I'm really doing. Then we know if I need any further management. I try to get my blood work at discharge and have a nurse go over them with me so I understand what is really a high and what is maybe you recently had eaten. Also to explain any other blood work I've have done. Just looking them up on the net you can find some good infomaton about understanding your bloodwork results. good luck~ BellaMia~

i'm very happy for you. .... pots has a happy ending for many young people, although i do not know your age. i was taught the same thing this year by my plummy. he also suggested the use of a hand fan or a small fan. i found a small battery operated one to wear around my neck very helpful. i also use it when the wave of heat hits me, before my body is telling me i want to drop to the ground for safety sake. i have also been called a herperventerlator by high and almighty er docs who tell me they are very highly trainned to see this, only to be sent elsewhere to the top hospital in our city where stress test came back congestive heart failure, neuro muscular disease, then ttt pots. i pray that you stay on the road of good health. it's sounds interesting..... i do believe in miracles. blessings, bellamia~

http://www.butyoudontlooksick.com/personal_essays/ ButYouDontLookSick.com : Personal Essays I hate it when people say this!!!!!! Hi, I came across this today when looking for something else. sometimes it the things I find by mistake that are the best of all. THIS one story is about a person with lupus, using spoons to illustrate their amount of time and energy. I have always used a cup of energy for my day to my friends and family. Recently, it has gone down to 1/2 cup. The whole website was a great resource. I'm sure many of you have found it before me. I just wanted to share it, as I noticed on their forum people talking about Pots. Would Be nice if were listed under their medical conditions. I got a good laugh at the funny t-shirts for chronically ill, and enjoyed looking at their book list. THIS HAS BEEN A VERY difficult past 5 weeks for me. Being sick 24/7 has started to take it's toll on me. The Florinef, side effects is getting me really down. The zofran they give me in the hospital today, helps given in a a hung iv. Last week in a shot not so well. Then, when I sit or stand it starts up again. The wheelchair ride was like a roller coaster ride. My cardio wanted my PC to cover me with the nausea med and she called in zofran. It wasn't covered and needed prior approval and she had left for the day. I was so sick that the kindness of a now friend/staff worked on all of this including convincing the drug store to deliver it to my house. They don't normally deliver, bless her as MY CUP WAS DRY ALREADY......... and I was just hydrated and very exhausted! RANDOM ACTS OF KINDNESS..................... : ) ( : NOW I MUST DO SOMETHING NICE IN RETURN, AS JUST AFTER THAT ANOTHER worker volunteered to take me to the hairdresser and my dog to the groomers *smile* I just have to pick the day. I feel crappy today, but kindness like that goes a long, long, way.... I'm Blessed and back home. We decided to leave the acess to the iv in for Friday. I'll try my best to keep it dry.... and my spirits lifted up by kindess and that the nausea med will work........ DO OTHERS HAVE TO LIVE on these meds just to take a med? I really hate putting one more med in my body. Do others have problems with positional nausa being medicated? I have another TTT coming up and if I'm stay on the meds will it mess up my test as last test they kept asking are you going to be sick? Have others been able to tolerate sodium chloride pills? Doc told me they are very harsh on the tummy. Not covered by insurance they were expensive. Just wondering Florinef verses sodium chloride pills peoples experiences..... Thanks ahead of time. Please forgive any errors here...... Feeling soooo sick, ~ XXXXX's Thanks for any help.... Hope you enjoy the link. blessings bellamia~

I feel for you sweets.....i have he same thing, only lost the gall bladder 4 years ago. that pain was unbearable, i couldn't breathe. today my bp is dropping low again and hr 140 just getting up. the heat, is really getting to me and i have a basin right beside me at all times. this florinef should be making my pressure go up. I think a lot of us are under a lot of stress and the heat is getting to us or at least me. I need someone to get my air coniditoner down here. You've had a lot going on sweetheart, but when in doubt check it out! Oh thank GOD, it's raining now, that may cool things down here. I hope you are well! I'll say a prayer for you.....I go in the hospital tomorrow and they will check me and give me zofran while I get fluids. Julie, you break it all down so nicely..... Take care. Blessings~ Bellamia~

The only reason I'm concerned is sorbitol, was I thought it was a wonderful thing or so we thought when I worked for the american diabetes association. It began showing up in everything, we were happy at first, something natural???? Then everyone started getting sick, the revenge was called diabetic revenge diarrhea. i tried it and sure enough REVENGE! Even from 2 hard candies. I listed some great products under what vitamins do you take? The Drink is great and comes in packets. Great breakfast drinks also. Right now the hospital has me on ensure mixed with milk on the blender, fruit when I can tolerate it. Then gatorade with water, water , water. Here's a make your own: Sports drink recipe from “Nancy Clark’s Sports Nutrition Guidebook” 1/4 cup sugar 1/4 teaspoon salt 1/4 cup orange juice 1/4 cup hot water 2 tablespoons lemon juice 3 1/2 cups cold water In a quart pitcher, dissolve the sugar and salt in the hot water. Add the remaining ingredients and the cold water. The drink contains about 50 calories and 110 mg of sodium per 8 ounces, approximately the same as for most sports drinks. Cut the sugar if you want less calories. Bellamia~

I can't tolerate the sorbitol side effects. when your drinking gallons every day and you have irritable bowel or your a diabetic watch out! http://www.webmd.com/diet/news/20080110/sw...-case-histories bellamia~

I'm sitting here so sick for the past 3 weeks from florinef....... have to travel with a bucket in cabs. Don't want to eat much much any more and i swore i was getting high from the florinef and I'm so dehydrated from being sick. Tomorrow can't come fast enough for me to get to the hospital....everywhere I go they make fun of me of the lady who is allergic to everything!!!! Ha, ha, ha, NOT!!!!! especially when I got the cortisone shot in my butt and they were fighting over what I could have as I was ready to barf and my head hurt so bad. I said just give it too me. wrong side, I still can't walk!!!!!!!!!!!!!!!!! I can't take this florinef and I'm tired of all of this. Now I feel like I'm getting sick on top of it all. Another thought about all the asthma people, most of the asthma meds case racing hearts. Question? Do you really have asthma? Just asking as I was thought to for almost 20 years then they found out NO I don't have it. It was Pots, Just a thought in case they haven't had you see a plummy instead of a allergist. I'm so mad I ever took all those meds for all those years when I has something else wrong with me. Good Luck all blessings BellaMia~

I STARTED OUT ON SALT AND WATER and when they neuro told me i was so dry and to start gatorade tons of it a day, i loved it! in the past i never could stomach it. now I try to go half water and half gatorade. now this was on being hydrated once a week i was still very, very, dry. now were at 2 times a week. i really don't wan't to eat much as i get very sick these days. thristy all the time. bellamia~

I'm so very sorry. I'm actually grieving the loss of my guy, who I had to break it off with a year ago as he could not be there for me fully after 8 wasted years. He left me alone in the er when they thought I had a blood clot in my lung. It's too long to go into here if you wany any support sweetherart email me I'd be more than happy to help. Your are in my prayers. I actually miss the d** fool. No I miss being loved and companionship. I'm getting pleanty of love from all the people I meet these days and when the time is right I pray God sends a a man the will be able to deal with all that is going on, as i'm still lots of fun and I'm not dead yet. LOL! I'm much better without his negitive energy and he was a lier, lier, lier. Oh, the things I found out after the red flags were all there but, fear of being alone makes us turn our heads.. When one door close a better one usually opens sweetheart. I have to run, no walk slow... I have a party with family to go to. this is a rare event. I'm sending out the vibes to meet someone there. The law of attraction here I come. Meanwhile make a list of all the good and bad things about your guy and read, "coming apart" it really help you make sense of your relationship. If it's meant to be he'll be back and maybe there's a much better man around the corner for the rest of your life. Really we can chat if you want in more detail. Meanwhile you haave all of us. We need a man like the one that was on 20 20 last night if anyone saw it with the poor woman who developed stiff person's syndrome. HUGS are being sent out timed released. I really know how you are feeling right now. Hang in there! Tough times don't last , but tough people do! love, BellaMia~

Hi there~ I hope this is nothing, as I hear you loud and and clear, no pun intended. I got VOIP and gave up my home phone this year I hate it but It's was all I could do at the time. I started hearing a buzzing sound and blammed it on the phone. The cable company came out and they couldn't hear it on the phones. Then one day I realized I wasn't near the phones and I was hearing it and it would come and go. Sometimes a heart beat and then a buzz. My doc told me that I may be progressing in my pots and that neurapathy may have gone to my ears. my mom we believe has had pots she couldn't hear most of her life out of one ear. A few years ago she was taken to a ear specialist who pulled a the biggest piece of ear wax and now she can hear again. LETS PRAY FOR A DEEP BUILD UP OF WAX..... BellaMia~

There's no place like home!!!!! GLAD your back. xxxxxxx's BelliaMia~

hi, sorry had to grab dinner. i'm low always recently till 2weeks on florinef and i'm can't stand the headaches, nausea, and memory problems. my docs want me to take my pressures standing and sitting whenever i feel symptoms. cardio wants me to be at least 140 standing. yes, i did say 140 or ever higher. then we can add a SLIVER of a bb the last one I haven't tried. i've been 110 and falling since they took me off birth control pills The strongest ones the put cancer pt. on to stop pre-cancerous cells. within a week i was in the hospital, put me on another one i had no choice but to weather the storm, as my cardio would not allow surgery with my vitals so unstable. i was unable to stand in the am bp would go up mid afternoon crash evening i was doing near pass outs at night and pass outs confirned by 24 hour bp monitor over and over again. last week doctor decided this old heart has been a ticking way too hard for way too long, i had been mis dxed 20 years ago with asthma. i have been taking all the wrong meds, neb treatments, inhalers. i think you get the picture. i've been low bp sitting and even lower sitting with exertion the hr goes up to 171 and can't catch my breath for 15 mins. i go in the hospital 2 full days a week for iv hydration. it's a big help, as it stays in me longer than when I drink it. i must say if these headaches don't go away i don't know what more the dr can do. as we have run out of options. i'm on 3 meds for headches now. i'm allergic to so many meds that i had to get a cortsone shot in my butt yesterday without any numbing agent ( allergic ) I hope with your kids you can teach them that everything is fine, role model that a mom takes care of herself Kids fear more the unknown. my almost 5 year old granddaughter is the one who talks to me the most openly with love and care. We talk about having NO FEAR and then she'll tell me what she thinks is going on and I tell her so she doesn't have to worry. I resure her that I'm getting the best of care to have more energy to play with her. I also educate her about all the medical equiptment they use on me and she uses they in her pretend play. She wants to be a doctor one day. I try to take a situation and turn it anound into a learning experience. I love hearing what is going on in her little mind. It's better she express that she's concerned about me out in the rain wnen it's not salt water. Who would have known? We are always open my little girl and me! I hope this was helpful. Good luck to you. BellaMia~

kayjay what time of day are you high and low? do you just take a bb and is it er? you sound like i used to be but i was on hormones to stop bleeding. bellamia~

Stace, My mom always said this, "No news is good news." Today you don't have the dx and let's all pray that you don't. Keep yourself as stressfree as possible. Let it all out here. You know you have all of us here for support. That's what is so wonderful about this forum, there is love all around sweetheart. I just said some prayers for you. You keep us posted, and if It's driving you nuts. everytime you start thinking about it try this, I say, "cancel, cancel." I hope the results come back soon. Remember we are all here for you. So, try to relax and don't even read about it. If you were to have this then by all means educate yourself. HUGS AND GOOD THOUGHTS~

fibro to me also, got it, stiffness really is difficult....

it's most likely yeast infection in your armpits. there is a nystatin power for it you need a script for it, from all the sweating.Yeast grows in warm places lke the arm pits. Yeast spreads also. i'm allergic to deoderant and have to buy all natural crystal in the pump spray form and buy all natural shampoo's and soaps without all the bad chemicals. good luck, because it drives you crazy, especially at night.

MY NEUR/ spec. told me many of her pots patients have problems with their blood sugars and I'm one of them, even though my ac1 test will check out normal. It's best to eat many small meals to keep the blood sugar levels normal.

I hate ER'S at but, WHEN IN DOUBT CHECK IT OUT! I'D RATHER BE HERE TOMORROW THAN NOT! I've even been back two days in a row and they have said we would rather you come back, with your condition it's hard to tell. At least you get right in with chest pain and don't have to wait. I do hope all is well, but it is hard to decide sometimes. Cardio Dr. always sends me PC too! Blessings~ BellaMia~

sweetheart, It's not easy having Pots and being a mom. First, call in any help you can and try to rest and drink and then on Monday call your doc. First thing that comes to my mind is that after having a baby thyroid levels can go wacky. I didn't see you listed anything about yourself on your about me page. I don't know if you take thyroid meds or not. When my sweet daughter had her baby I knew after her thyroid was off hyper. She was acting like a wild animal protecting this newborn and thin as a rail. I begged her to ask the doc for a test and she said NO and nearly bit my head off. I stayed out in the waiting room with my granddaughter and new grandson till she came out. When she did she was laughing with a lab slip in her hand. Dr told her she looked hyper thyroid and would need to be careful as later on down the road she could become hypo. I just should have kept my mouth shut. Doc saw the whole storm. I'm not dxing you, but just adding my little story that having a baby throws ones body all off and then add in pots and it's a whole new ball game. There's nothing wrong with asking for help and I wish I learned that earlier in life. I thought I had to be a super mom and do everything my way and mostly myself. I think most of us that post are feeling pretty crappy most of the day and come here for all the support we can get though the day. I will say a special prayer for you right now, and may you begin to feel better right away. Also one for the rest of us who battle this daily. blessings and love to all, bellamia~

Oh, this just isn't fair. Thank God you have the loving support of people to bring you there. I'll pray for a safe trip, packed with comfortable memories, and some laughs along the way. We can still make them. Pain meds can take the edge of pain off. All the other tips were great. And when you get back and found a new trick too help please tell us. I only travel with toddlers in my pain and suffering, on a family trips. I've taught them I spy with my little eye. It helps divert my pain, and a child's view, laughter and changing of the rules of the game gets me anywhere. All other times it's alone in a cab, till they add another patient in. it's a hard long ride home when your sick, sometimes 2 hours out of the way. hang in there. blessings and love, belliamia~

well lets write them, or Oprah... BellaMia~

thanks for letting us know, and my prayers are still *** all of you. I'm glad things are turning around.. remember, to keep yourself hydrated and you'll all be home soon. blessings and love, bellamia~

But You LOOK Good! A Guide to Understanding and Encouraging People Living with Chronic Illness and Pain. http://www.invisibledisabilities.org found this surfing the net, janey and hope it might help, another book i have used over the years with people are: DO I HAVE TO GIVE UP ME TO BE LOVE BY YOU? BY JORDAN PAUL, PH. D ANDMARGRET PAUL, PH. D.

I've been very frustrated lately about relationships of all kinds not understanding me and me having POTS. I have a lot of ideas to get my point across. So, one has been a book for couples and families. As in college I did my thesis on, "The Effects of having a Diabetic child in the Family and what it did to everyone." I remember the professor reading it and she cried before she marked it and gave it back to me. I was divorced and my son had just turned 9 and I went to my first class that night and throught for sure I would just drop out. I learned so much then and feel now the same dynamaics are still going on only now it's me and I've got Pots. Relationships are hard work, even harder when illness is thrown in to the works. So, I'm writing it and I better hurry up as I'm working on several books from this bed of mine. Blessings~ BellaMia~