tinkerbella

what's wrong with a wedge? I use a wedge with a foam pillow ontop of that. woulds a hospital bed be better as for the swelling of the feet and all kinds of pots issues? Just wondering? BellaMia~

Back from cardio............ I can't get off the florinef right now. I can go 0.1 one day the 0.2 the next day... he said the real decision will be up to my gyn as it would be unacceptable to bleed. Hysterectomy, could be an option if she decides that's an option, and of coure I know his rules. NO STANDING UP WHILE HAVING SURGERY! DR FOR anesthesiologist, have an arterial line put in, everyone talks to him before touching me. He's willing to allow me to have surgery, but I know she won't touch me. Right now I'm going to have to weight out the side effects verses what will happen if I don't take this med. It's made me sleep at night and not fall and pass out. I'm the only patient who has problems with all meds. So, this may only happen to a few med sensitive others here. My ttt test came back with bad results, but he feels that I had been so sick the night before and concentrating on trying not to toss my cookies throughout the test, so to speak that my super high blood pressures did not fit the bill. My neuro thought I may be failing more....and wanted to add more meds that my cardio find not acceptable for me. He also, doesn't want to add one more thing that I'm allergic to. HE was really impressed that I ONCE WAS MARIA CASTELLS MD...... Patient, AND WANTS ME TO GET IN TO SEE HER ASAP...he was very open to what I HAD FOUND OUT HERE SAID THE more we get everything else under control, you're pots will be under better control. We are still planning to see how I can start a support group at Newton Wellesley Hospital.....YES!!!!!!!! He's going to give out my name and # to his patients to at least get started that way. It's between Boston and Worcester. That will be something to focus on that is good, positive, along with cleaning out my life and simplfying my life. I have to ask the gyn in an email the questions about the florinef that dsdmom asked. I wrote what she told me on the phone. I will write her, but she is going away on vacation. Will let you know, maybe I'll call the drug store...I'll be having a biopsy early Sept. just to play it safe... I'm sooooooooooo tired....I need a nap now. Oh before I nap, I guess for now I've got to tolerate all of this and was feeling mad. My daughter and grand babies came with me today and entertained the office. I have to hold on to the memories of them playing with my new walker and making everyone laugh. My granddaughter wanting to go in with me but I said I needed to be private to listen and she said you mean he has to look at your privates? LOL!!!!!! Once again we all had a good laugh....We make the most of the times we have together....I must remember days like today, when I feel like I just can't do it one more day, because there's a little girl and a little boy who he found some trucks to take home and said I love you nannie. And the phone just rang, my daughter dosen't know how my grandaughter called me but, she called to say I'm sorry I hit you today nannie, I really love you. Then she started singing the love you song that I taught her that when she was tiny. I used to sing to it to my kids when they were little and now I'm all *SMILES* Hope you are all well and glad that florinef works for most people around here. Love and xxxxx's, Bellamia~

My gyn said some woman are very estrogen sensitive, and even flax seed has it in it and many foods. they all add up especially if there is cancer in your family or if you have hormomal issues. BellaMia~

Did you know Florinef is a low dose estrogen? I found out this interesting fact today, you may already know it but I have a hard time searching things here. I've been bleeding actually started a year ago the doc, had no idea why I had become estrogen dominance... They didn't know I had been on florinef...and had to stop due to very high BP. the linning of my uterus had become pre cancerous and had to be removed. The lining as no one wanted to do a full surgery on me with my vital signs. I was bleeding for the whole summer and none of the hormones would stop it, it only flared my pots. I landed in the hospital three times with my iron dropping to 4. Now i just had a cortisone shot in the butt for my back and started florinef and I'm bleeding like crazy, brusing, migraines, having hyper allergic reactions, rashes when I go in the sun. My gyn calls tonight and I ask about florinef and she tells me yes it can mess with woman's cycles or bring them back!!!!!! And then she tells me she's had woman who have had cortisone shots who will get periods. I tell her I had one almost a month ago, but I don't remember when I started bleeding....I write everything down but was too tired to write that. Now, the florinef was what really helped me not pass out at night and now I know I can't take all the side effects. I had a ttt test and right after the dr said I have to fax your dr right away and you need to talk to him right away. He was on vacation came back today. I could barely understand a thing she said as I was trying not to toss my cookies. I have appointment tomorrow with the cardio to see what we will do. Anyone else have this happen to them on the florinef? Also, my heart rate has dropped really low when it was really high over 100 all the time. My last visit with the cardio I told him I was going brachy why would this happen suddenly? I also wasn't able to be tilted fully as I was going to throw up so would that change the results? I was so sick after the test I couldn't even ask questions, as I needed a basin to throw up in and all they could find was a bag. I think all labs should be have basins nearby. The fellow pusing me in the wheelchair I wanted to scream slow down this is not a roller coaster, do you understand I'm motion sick right now.... I really think my life is a movie at times.... Florinef has estrogen. how do men feel about that? So now I need a uterine biospy in two weeks. I don't know about anyone else, but I'm reaching my saturation point...........I'm just getting too tired of of putting out all the fires around me all by myself lately..... But, tomorrow, I see my babies and It's my Fake it till I make it day......and I need big HUGS from a little boy and a little girl who have been on vacation. That's all I need, then I'll be ok till next week... Blessings and Love to all~ BellaMia~

I'm so HAPPY TO HEAR THE GREAT NEWS!!!!!!!!!!! ((((((((((((HUGS)))))))))) and *SMILES* Blessings and Love, BellaMia~

sorry your in pain,i take topamax it helped with the soaking night sweats i was getting and headaches at first, but the headaches break right through now.......then i have migrinal, but you only can get 8 viles a month. if you uuse it more often you get break through headaches.......the neuro told me i'd be best to use tylenol with codine in small doses only when i really neeeded it. i suffer daily daily as well, and feel your pain. i saw on opra, dr oz that if you take your take your thumb and index finger of your right hand, and press frimly between the fleshly area of your plam between your thumb and index finger of your left hand it helps to stop pain like headaches. i really think it helps me... it's harmless , it's free, and no side effects.... you'll know your hitting the right area of your hand as it will be tender and hurt with pressure. try it. feel better soon, bellaMia~

Stace, Wowwwwwwwwwwwwwwwwwwwwwww, that"s a lot to go thorough. I'm thinking of you and sending you lots of gentle hugs and prayers for a quick recovery. It really seems like those of us with Pots seem to go through the worst case scenarios or just plain get hit harder with anything that we go through. I wish all of us lived closer so that today I could drop by with a hand picked bouquet of flowers from my garden. They give me so much pleasure passing them on to everyone who touches my life. So Stace, if I was magiical today or I really should say tonight I would deliver you a special bouquet in a fancey tea pot to cheer you up. Please take care and follow the rules and to geet back in working order in no time at all. Be well~ BellaMia~

Good Guestions firewatcher: BEAR WITH ME, MIGRAINE ON BOARD! How much should we expect? In my opinion and with my own PC I think she she looked at me as an ongoing learning expernience over the the years. Althought it took over15 years with her to find my dx., she never dissmissed me or ever made me feel liike like any of this was in my head. In fact it was her who insisted that when a blood pressure med made me so sick, and she apoliged for having not noticed the signs sooner that I was having a allergic reaction and sent me to a ICU plummy care doc. who found out I did not have asthma and then sent me to a cardio who, my PC was about to sent me to for the same tests. When POTS was dx. Then, when I saw her next I told her that the other person whe kept comparing me to in her practice, to have them have a TTT test. She did and that person had Pots. Next visits she told me she had dx. 3 more and had hired a new med/sed with POTS and was learing everything she could. I'm blessed in fact when I read something here she'll say let's try it or test for it. she is the most wonderful woman doctor I have ever met. she always books long appointments with me.....She's more llike an old fashioned type of doc where she gets to know the whole person. She always tells me I'm her judge of meds, docs, hospitals as she trusts my opinion. If I don't like the way someone handle me then she won't use the again. I believe she wants to learn everything she can about all her patients, and the that is how she continues to learn though each and every one of usl Pots isn't the only thing she hs to learn about all the time. But she is learning when she knew nothing at first. My cardio, is open to everything and I'm very lucky that is handels Pots. Not many do in my local area...So, I was really blessed the day I met him... I tell him something and he says send me the article as I want it and I'd like it for my patients for a hand out. I want to start a support group and he's looking into it. He' told me that I've his most challenging case and this week as he's on vacation his partner told me the same and she is just as wonderful. so He sends me into the city to be fine tunned by the neuro/pots spec. to learn ever more and for my continued care and to make sure that I'm not progressing further in my dysautonomia an many parts of my body are out of control... which he also has me going to many other doctors each area that is not functioning correctly... as you all know this is a full time job. Although, my case is a challenge to him he has never found a vascular case like mine. His office, although I'm hard work I'm a teaching tool to them also.... My neuro, is well know and knows I'm not an easy case. She along with my cardio spend long visits with me, emails, phone calls . She allows me to email in before I arrive with a list of questions of what is going on and what I may have learned here. then we go the list them one by one after a completer physical exam is done. If some one has told me about a virus related to to EB vrius we do it. If I'm sleeping with my dog and my joint pain is worse we run all the tests lyme and rocky mountain fever, If i have any concerens they address it and that is what I expect and my cardio expect. He sent me somewhere else in the city first somewhere where he thought for sure they would write a medical journal on me. this doc just through his hands up at me...... was not warm and fuzzy.....he spent 5 mins with me....I would not go back.....I like warm and fuzzy, along with smart.... we said bye, bye.... I'll just write my own book..... So in a nut shell, I expect all my caretakers to be warm and fuzzy, caring, understanding, super smart, but willing to learn when they don't I leave, I also need the following, kind enought to teach me when I'm having a hard day understanding, want to learn about new things I find online, realize that I'm really sick, but but alive with dreams of being well again, care for me unconditionally on good days and bad...and that I have 2 hearts one real one and another that feels what people say when they think I can't hear them, that is kind loving, and giving to others, that loves, laughs, and cries, that inside my heart lives a younger, stronger me begging to be set free again, and my doctors have seen all these sides of me.... So if they weren't who they are, I wouldn't have left them as I'm don't settle for anything less. God Bless My Doctors each and every one. Blessings, BellaMia~

sorry to hear your troubles my neuropathy that is in my arms, hands, legs, feet gives me similar troubles....please don't walk on the when they are this way, as i have broken my foot and not known it.....sprained it, had all kinds of bad accidents as i can't feel real pain. in my hands, i've lost the feeling in fingers numb like thinking it would go away. it was cubital tunnel a cousin to carpal tunnel which i also have. all require braces. and testing is done to find out if you have this. if you don't do something about the cubital and carpal you could need surgery. check it out with your neuro. or doctor as that was my situation. blessings bellamia~

Julie, With my dysautonomia, I'm unable to retain fluids and two full days I have to go for sodium chol. infusions. they take the whole day between getting there, trying to access my venous system, ( I'm getting a portacath soon, my case is complicated) and dealing with the complications that arise while I'm there. Then the issue of getting back home again. BNP is to check to make sure I'm not going into congestive heart failure. I have these done all the time as my level on stress test came back suggestive of congestive heart failure. so we must monitor the fluids when I feel any new feelings and yesterday it hurts to breathe. Today I'm thinking the pain is lower and in the left quad of the abdomen. lower bowel and I'm try some home remedies first before going in the hospital. I think you can understand that one... this link is all about a BNP Test. I have them all the time, I thought everyone did when they got blood work done from the cardio. Like I said in a posting before, my case is not a simple one. My doctor and team are a blessing to me. MY doctor has never seen a vascular system like mine before and thought when he sent me into a certain doc who I will not mention , that he would write a medical journal on me. But this person had his fellow spend all the time with me and then he walked in the room and through up his hands and didn't know what to do with me. Thank God I found another wonder Neuro in our city who is working with my cardio. I just can't keep enough fluids in me...Tanked up yesterday and I'm so dry this morning. thanks for your ongoing support. It's off to return the monitor and come home and rest and it looks like another scorcher out there today. I better call the gastro, allergy, PC, and the taxi. I'm tired just thing about it. LOL! It will take me a while to line up an appointment as I'm trying to line up rides, but I'm working on it.... You'll be the first to know.... thanks again... http://www.webmd.com/heart-disease/brain-n...eptide-bnp-test Blessings and Love, hugs too! BellaMia~

tachy, i think you are sooooo right on. I love little kiddles and what they have to say about the world..... i like how you think.... you gave me a big *SMILE* after a LONG DAY! Now, i must look up you links.... Have a lovely whatever time of day it is to you. BellaMia~

We are not "POTSY" we are "PRESSURE COOKERS,"......or maybe "SHAKE AND BAKES,".......I JUST LEFT another post asking why does my whole head, eye and ears feel like they going EXPLODE!!!!!!!!!!. MY HEAVY DUTY PAIN MEDS won't even touch touch the pain.... Today I was at the end of my rope. How much more can I take......I'M GOING TO GO NUTS!!!!!! BUT I HAVE TO BE HAPPY, HAPPY, HAPPY OR NO ONE WILL WANT TO BE AROUND ME... EVERY PART OF ME IS THROWN OFF... Rashes, itching, heart rate BP........ Before I knew I was a Potsy I started saying the older I get the more I hate the hot weather, and then I started saying it about the winter. I just can't take the extreme temp changes.... the ringing in the ears, throbing, heartbeats..... I couldn't even try to challenge the monitor I was so darn hot, just to walk across the room I wanted to pas out. the new paps that weren't there yesterday when I had the monitor on. I hope it captured something as I woke up with a huge bump on my head that I have no idea where or how I got it. the three new attempts to try to access a vein today as they tell me I'm so dehydrated as I've been drinking like a fish.... (why do they say that anyway?) the rashes looking like the measles... Everytime I go out in the sun now I look like a clown.... Nice as I ust found out disabled plac cads get free. (just my luck now) Well thanks to whoever started this post so I know I'm not alone. Is there anything that helps? Sadly, I tripped over my fan last night going to the door for a cute kid who wanted to buy something I was selling at my yard sale for 50 cents.... Lost a exepensive fan but got rid of a painful memory....LOL Was worth every penny.... I know find a tall, handsome, single man to carry my air conditioner downstairs and see where it could be installed. I'll have to put that on my to do list tomorrow.... I hope everyone finds some way to keep cool and think of something to be thankful for. Today, as I was waiting for my cab at the hospital 3 young men from an area collage came in looking for their friend they were all wearing football shirts as they were practing football. the woman at the dest told them their friend was in ICU. They seemed clueless,(they didn't understand that icu was a serious place to be. One was acting high, and off the wall. They all had football team shirts on. I asked for there friend's name and what happened as I would pray for him. They told me they didn't know he collapsed during practice yesterday. Yesterday was the hottest day of the year here. I was enraged, we started to talk and they said we MUST practice every day. I'm not trying to rob the post, but parents if you have kids in school sports become as voice as in these conditions we all know what can happen. Hot days air conditioned gyms can be used for trainning. Lives are lost every years because of this stupid rule. PARENTS EVERY WHERE NEED TO SPEAK UP! As for now there a young man lays in ICU, who needs prayers. thanks as my heart goes out to this young men who just started school and enough said let's remember he was a healthy young adult in the heat taking water breaks every 10 mins. We need us and get back to this post and keep drinking and you do all know when your thirsty it's too late. That is the body's warning sign that it needed water so stay hydrated in this heat... Let us count our Blessings tonight! Love to all~ BellaMia~

Julie, I just got home from my infusion, this week i couldn't breathe after lunch and went to the bathroom. i had a bad gripping pain in the left side breathing they had to run a bnp. i was let go as there was no weezing or rale sounds and i always show oxygen level 99, but I can't breath very tachy. dr will call later if bnp is showing anything. i think i have new issues going now since the heat wave. I need to get to my pc. i really WISH i had A CAR AGAIN...... not being able to just jump in a car and drive to my docs is nerve racking..... THERE IS SO MUCH PRESSURE INSIDE MY HEAD, left eye, and EARS tonight...............i could scream, but i won't.... Thanks for your support again.... (((((((hugs right back to you))))))))) bellamia~

I also starting reallY crashing as an areobic instructor back 10 YEARS AGO.... My heart rate was so fast I could not even count it..... I know I've told my story before..........then finally someone figures the puzzle out! I was in great shape tone and muscle wise. now i'm can't believe how much i've changed since then. the slow progression has finally caught up with me. I will see what I can do on a local level to help people with pots. i'm needing some real hugs these days... BellaMia~

Julie, I still can't believe this..... I know they didn't know what to make of me back then....And does she know all about POTS? I'm going as I've covered in a rash from sun exposure. Then from my heart monitor each time I get a rash and last night it was the worst ever. I look like I have the measles. A week ago I had xrays for a cortizone shot and just before that a cat scan and x rays for near bowel ostruction. So people get both... hummmmmm.... wow. Do you have to come back to see her again or does she micro manage you by phone. She is that nice, I bet she would... Thanks for everything, as soon as I workout some transportation I'll set up an appointment. Blessings~ BellaMia~

Nice work all. Feel like I'm on HOUSE tonight as I still itch! 1st I'm Irish/English Dad/Mom 2nd I've always been a kid who always got embarresed easily and people knew it and made me do it all the time to tease me. (anyone else ) 3rd I have dimples anyone else have this defect? Just wondering as I met a new Posty who had them and it made me think. 4th I have mottled skin on my chest always looks rashey to me. 5th Now just started with rashes and need to lrosasea well, I can't think straight as it's so hot and late. I'll check back later on. I'll check out that link many. many. thanks. ~bellaMia~

Julie, I can't believe it that is my doctor!!!! I haven't been to see her in 12 + years because I have been so sick....... and she back then I was thought to have asthma or her associate dx me at the time. I couln't get in with her and last time and so my PC sent me to a plummy care intensive care specialisy. I loved her. I was on atterax for years but did not want to be on something sedating. I still had terrible break through itching that even bennydryl won't stop. Funny thing is at times it is my nose and I actually will rub it raw or where ever I itch. I went into a terrible reaction to testing to lidocaine in her office. It was pretty scary... I'm going to make an appointment and look into this. Thank you for all your help as I'm itching like crazy right now with the heart monitor on. I just might rip it off in my sleep the way I'm feeling. LOL! I see her in the Brookline office, do you come out this way just to see her at the hospital? I'm having a mental block on the male partner who dxed me with asthma and was baffeled when I ended up in the er that night. I remember I felt like he thought it was all in my head. Now something weird is happening in the sun I don't know if it's rash or blood pooling. I have a hard time getting to the docs due to transportation issues., still working on this one. I knew I needed to go see her last week when I had my cortisone shot and no one knew what to give me and I said to myself I need to get back to Dr. Castells... singular made me really extra tachy.... thanks again, gotta go take something right now for all this itching. Blessings, BellaMia~ Thanks, BellaMia

michele, do you break out in a rash all over fom the sun? yesterday, i was covered everywhere and lft side of face and eye is numb blurry vision it is back again today. got heart monitor feel so spacey i can't even do anything to get up and try to challange it. i just want to pass out. my doc is on vacation and dr on call is not a pots spec. my heart is bounding just laying here. i'm going to crawl to the kitchen to get more fluids. it is so very hot here. i felt good yesterday and did too much. payback gets me everytime.... blessing and unconditional love to everyone~ bellamia~

worththewords, I can relate to what you are talking about as it happens to me at night or wee hours of the morning or sitting at my computer. At first no one believed me till I got the 24 hour blood pressure cuff and it showed up what I had been telling them. In fact I feel it about to come on now, as my left side of the face is numb, headache, bp is dropping only now I'm going from tachy to brachy, and want to fall asleep. So, I'm going to head to bed and lay down where I know I'm safe. I'll sleep it off safely, as it gets too hard to see, so I don't fall and get hurt. My local er never understands and when I'm like this I can't even explain what is going on. Hopefully, Monday's heart monitor will capture an episode. Be well......... Love bellamia~

I nolonger have a car on the road and I miss my independance. Yesterday I had a real turn a round with the florinef and with being hydrated 2 times a week. I feel like I have some energy today. But if I had a car I could only run local errands. If I drive more thatn 1/2 hour I want to sleep over. I pray that a small car or small truck one day. blessings and love, bellamia~

Hi Dale, I would call the doc. and run everything by him or her. I also used to run like that on hormones. I don't known if you a male or female. But flax seed oil and soy contain estrogen and some people are estrogen sensitive to the small amounts the get in those ingredients. I do know when my pressure would get that high at the drug store before I had a monitor, the PC used to say your BP can't go that high you would be dead. Well I found out at the cardio's office that's what I was running and now I'm the opposite. Please check it out as if lyou sit around and worry you will only make it worse. You pay your dr. to be on call to answer ??????'s Be safe rather than sorry. blessings and love~ BellaMia~

Hi Dale, I would call the doc. and run everything by him or her. I also used to run like that on hormones. I don't known if you a male or female. But flax seed oil and soy contain estrogen and some people are estrogen sensitive to the small amounts the get in those ingredients. I do know when my pressure would get that high at the drug store before I had a monitor, the PC used to say your BP can't go that high you would be dead. Well I found out at the cardio's office that's what I was running and now I'm the opposite. Please check it out as if lyou sit around and worry you will only make it worse. You pay your dr. to be on call to answer ??????'s Be safe rather than sorry. blessings and love~ BellaMia~

i think these happen to many of us after exercise when we're exercise intolerant. i know they happen to me..... google it and see as my dr said don't trust everything people will tell you on a forum as it's not alwalys right. some people will end up upsetting you. if your really worried I would just call your doc to be safe than sorry. i hope all is well with you as today i'm very sick again. i get one good day and then pay for it the next. payback really stinks.....

Looks Good on you HARRY! ONE OF MY DOCS vacations down there and always says that to me after his return... welcome and wishing you the best here! what a beautiful place to live..... hope we can be of some help! blessings~ bellamia~

May blessing, kindness, good weather, caring people and understanding medical staff, follow you as you go on your journery to the Mayo and always! xxx's BellaMia~