tinkerbella

after i got dx. my pc hired a medsec, who has pots. she had not known anything about pots before. she has learned a lot from both of us and dx. 4 more since me. i feel very. blessed. i always had wonderful care, but now it's even better as she knows i can't let anything not be put aside to the next day. while i'm there we share our symptoms and we go to the same cardio office, only see partners who are both fantastic. they have taken care of both of us. I hope one day make a luncheon date to really talk. . my cardio has about 15 pts. 2 of us have it pretty miserable. i gave her my name and # once but but she has little kids (if she only knew i was a preschool director at one time. we could help each other ). i guess a person has to be ready and she looked really down back then. one of my best friends has ms and we seem to have a a lot in common. even though she moved away we talk, email and she comes to visit me. we laugh as we both play charades trying to talk. lol! blessings and love~ bellamia~

HELLO, I take b complex that i get at walgreens 2 for 1 sale as i swear it's calming. i was also told by the 1st neuro that i needed b12 injections 1@ monthly. they give me a burst of energy. someone along the line told me the injection breaking of the skin it's self will make one tachy. why? i don't know. my sister sells a blend i really loved mixed with herbs that super relaxed me, but i couldn't afford them after the nice gift she gave me for Christmas ran out one time. i wish everything was free, don't you? bellamia~

stace, we could all set up a gmail accounts and take advantage of all the free services. free voice and video chat. they also have google voice, that people should take advantage of. check it all out. you would just use your name as your id name. anyone want to try?It's all free and would save the forum money for other things. i'll start a post about it later. i was just checking in right now. happy 4th to all~ bluesman you are my sunshine, hang in there! BellaMia~

Hi Stacie, I recently had to have some cancer related surgery done quickly as possibly. My cardio wouldn't let anyone touch me around here because of my vitals signs and as my mom wouldn't wake up once after anesthesia. we were all called to her bedside as they thought she was never coming out of it. I really think she had POTS. I know i mentioned this before, but he said, "that he would want a Dr. anesthesiologist for me always." I thought they all were and he said, "no there are nurses also, but I would feel best knowing you were safest at MASSGeneral Hospital where they could handle both of your issues safely." there they could put in an arterial central venous line in my wrist and monitor my BP at all times and make me safe at all time with medications. They just needed to know what I was allergic to and not. My cardio would always be a phone call away. My cardio had sent me there for all my stress tests which were far superb to the ones I had had elsewhere. I felt if anything had gone wrong they had every thing about me at their fingertips. Also before surgery my doctor called my other new doctors and anesthesiologist and explained all about my case along with my notes. I wish you the best, and just be your own advocate along with your doctor's help and advice to guide you to get the best and safest care. I'll say a prayer for you that all goes well and you make the right decision. Blessings and love, BellaMia~

I've had it done by the high quality labs and then some. Some have never heard of what I think your having done. every time I alarm the docs with the results, as I really don't think anyone knows what they are doing or how to do the test right. Then I inform them of what was done wrong and they rethink it and change their mind. LOL! It's a long, long story and today is just one of those days. I'm soooooooooooooooo tired.

FYI: I'm always a 2 Jugger. I learned the hard way. Make sure you ask how to store it as some to chemicals in and others want you put it in the fridge. Good Luck. BellaMia~

em you are so right. my walker is purplieblue. i hope the wheel chair will be like that also. my insurance makes you rent it for a year and then it is yours. what make is your's and model # as sometime when I get a ride back I need to order one along with a back brace. anyone else have some pretty ones out there? I also am disappointed about not being able to travel and go away for the long holiday weekends. It's these holidays that I miss my ex and feel very sad. I have setbacks emotionally. Feel lonely and cry a lot. Having no wheel these days is hard to deal with. each holiday brings up a whole bunch of emotional mud for me. Each day I think I've figured out who I am with this POTS dx and then another set back comes along as they find something else wrong with me. All I really know these days as I crumble like a cookie and go and get watered now two days a week in the hospital. l think that God must be putting all of us through this difficult experience to be nicer people. I have to say I've never met such wonder and nice people as I have met here. Thanks everyone and may we all make the best of this holiday weekend. Let's make our own fireworks! Blessings and love, bellamia~

i had to take a bigger step this week, i kept having to sweat till i would have to just have to sit on the floor where ever i would be. my doc wrote me an order for a fancy smancy walker with a seat. i usually walk with a crutch, maybe now i can start to go out a bit as i'm basically house bound. they make walkers look really cool these days. i felt like i was buying my first bike. one has to do what they have to do to get by. i did have to pay and will be be reimbursed for most of it. good luck, and take advantage of of what supplies are available out there for you. my insurance wouldn't pay for a cane with a seat, but would pay for the walker with the seat. also, wouldn't let me get my wheelchair all medically needed as one must progress to these items. i tried to explain my illness, but the woman said it was the insurance company. crazy. i look forward to trying to build up some muscles with my new equipment. blessings and love~ bellamia~

this is my thoughts about how we get paranoia: that's when you're spending too much time online. often we read the worst cases that frighten us. We read information that we really don't know how to understand. I started to do it the other day about getting a potacath, then i said STOP! I was reading all this scary stuff that I did not need nor understand. I told myself wait till you meet the doctor. if you had an MRI you would know if there was a serious problem right away. Let the doctor do the work, that's what they get paid for. we can waste so much precious planet time worring about things that never happen. wait till you get results, then educate yourself. read a good book in the meantime or do something you love to take you out of this illness. something that makes you feels stress free. we've all done this i'm sure. i just leared it's not worth it anymore. I hope this was helpful. Take Care and have a peaceful day. blessings and love~ BelliaMia~

Welcome Reef Diver, Congrats to you for being your own adovacate and finding out what may be wrong with you at such an early age. For me the focus was Lupus and still is as another dx., but you are so right that, "validation feels so great after so much fighting!" I believe there are brochures here you can get to send to docs. That are about "Would you believe this persons has Dysautonomia?" If they don't I dreamed it and we need them. I've been meaning to get some to send to the former neuro docs that I left in the past or er staff that treated me rudely. For me my Pots is a full time job, taking little pieces of energy here and there. I wish we had one to educate the er or new docs when you as often I'm just too tired to talk and explain when I'm ill. You've only just begun and I wish you the very best with your health and health care. Blessings and love~ BellaMia~

i used to use it until i found that it can bring out an underlining autoimmune disease. none of my docs knew this as my ana kept climbing and climbing. i now use cal. and vit d in the middle of the night when i wake to lull me back to sleep. i don't have the article but found it by googling melatonin. i'll never take it again and it did help me sleep. I just don't need one more thing and yes, firewatcher i'm with you. OTC SUPPLEMENTS ARE DRUGS and people pop them like candy. if one helps maybe 2 will do better. oh, and forget to tell the doctor. that's a big no no. blessings and bellamia~

jana, Congratulations my friend! sorry i missed this post sweetheart! you know you've been in my thoughts and prayers. SWEET NEWS FOR a sweet lady. Sending a gentle hug from me to you! blessings and love, bellamia~

hi there, as i lay in bed not able to get out knowing i need the med which my cardio ordered yesterday again. i said i haate how it maks me feel, i lose my brain. i asked to be put on salt tabs instead for a trial. he as always, never forces anything on me. then other thing he said again is bullion several times a day ,but not just before bed. he was going to send a script to the pharmacy for me. having no transportation. i must wait for the chance for a ride. the next thing he told me was my most import bp to him was what i am standing. he wants me at least 140 and we may have to tolerate hb pressure just to keep me safe. i had stopped bullion because everyone said my breath was terrible. so now i need hydration 2 days a week to try to keep hydrated and my salt up, a portacath, which i have fought till i have finally run out of veins. i also, asked what is all this salt going to do to me, as my weight has puffed up 20 lbs. he said maybe 2 lbs. i was afraid of my kidneys, and he said without this salt you are hurting your body worse. the kidneys are another issue. so bullion i'll start with, add in salt tabs, some people can't tolerate them on their stomach. we'll see . i came home all confused, overwhelmed as all this means calls to change hydrations dates, cabs, and i'm so tired. sorry this was more than you asked for, but i'm dazed and confused this morning. good luck. belliamia~

well let me know suzy, as mine does now. it used to go up high, really high, then change from moment to moment. last visit i admitted i was only showing stand #'s. So when he took me sitting he was rather stunned how high My BP was sitting. I did read somewhere that it can be a change in at least 20 points either way. bellamia~

wow suzy, that is great to know. it would be one more thing to make us feel were not crazy. i get tired of hearing each time i'm admitted, "she's the lady allergic to everything!" and they're standing right outside my room. MY EARS RING, but I can still HEAR. now with all the health cuts i'm worried about getting simple needs met now, let alone asking for extra tests. at my weekly infusion, the nurse was telling me, people will have access to medications, but getting their medical care will be harder and we may lose our choices in who we see. i must trust that all will work out for the best, as this and many other things are out of my control. blessings and love, bellamia~

every time i go in for my lupus check on my ana they ask about sore throats. this is another form of lupus i thought i show the link. Another problem is coronary artery disease. Occasionally, angina will present as throat pain. Patients with SLE and throat pain need a cardiac assessment. crdi vascular disease and sore throats. just fyi. http://www.arthritis-treatment-and-relief....pus-throat.html hope all is well. "when in doubt, check it out!" bellamia~

lupus you get the ana and and many other factors. i'm going back this month as my PC thinkS i'm having a flare. i'd just go to a good dermatologist if you are able. google rashes in images for a start. if it's rosacea they make a wonder gel you use for three months and it takes it away. they scare you on the internet with the wosrt cases. bellamia~

with lupus you get a butterfly rash on your face. mine kinda looked like it. but i didn't want a biospy on my face. i had already decided with my PC i wasn't taking the meds as the meds were the same for sojourn's syndrome which she was goin to treat me for. google images for the pic of the lupus rash. BellMia~

rene where are you? please contact us. bellamia~

I'm from Boston and will send you the info. BellaMia~

my cardio notes that i have red mottled skin. my chest usually looks like i'm going to having a mild reaction to something.i was dx with rosacea a few years ago and it was really scarey to me. everyone kept saying why is your face so red and do you have acne at your age? i wanted to wear a mask. i thought it was the mask of lupus, as i have a high ana, and a lot of the other signs. the doctor watches this. my complection is now fine until that heatwave comes over me. i used to blush as a child well this is a BLUSH FULL BLAST! I just bought a portable fan to wear around my neck today. takes 2 double a batteries. It's also for when i can't breathe the plummy told me to have a fan blow in my face. swore i'd never wear one of those things. bought two cause i lose everything. now i had broken out with a petechiae rash on my lower legs last month from Ibuprofen to blunt my heart rate. doc made me stop that. now i'm not on anything new and it's come back. I know it's not a good sign. I had an appointment with my POTS/Neuro DR. SPEC. yesterday and the cab messed up. never got there , so I'll have the hospital look at it tommorrow while i'm being infused and call my doctor. Anyone get petechiae rash? BLOTCHY BELLA MIA~

Hello, I just wanted to say welcome also. This isn't an easy road to go down, but getting the dx. finally gave me relief that I wasn't crazy. Infact, when my cardio walked into the room after many tests and after LISTENING to me he said, "It's not in your head or in your heart, you have really have something it's called POTS." "Everything you've been trying to tell everyone is real." "It a Dysautonomia causing your heart to beat way too fast." This was after a level one and level two stress test, then bunches of breathing tests ruling out I did not have asthma. I had been on meds for asthma for about 15 years and then the TTT broght us to POTS. It was a mean ulgy road and I think it may have been for most of us here. Sadly we get labeled, but when our docs really stick with us and get to know us they see the nicest patients of all. We have to be advocates for ourselves and then for others. Sadly, others don't want to listen when we see signs in them. I wish you the best of luck and may you find your answers soon. This is a wonderful place to come to and I'm very thankful this forum is here for all of us to meet and share. "I think your Gonna like it here!" Good Luck ~ BellaMia~

And just when you think there gone HIC they start right back up again .People start looking at you if your out. You try all the known and cures and none help. My mom is 89 and would tell me as a child they were from lack of sleep. I think she was on to something. BellaMia~

dear suzy, My goodness you sure have a lot going on. I just want you to know that I just prayed that things calm down for you and may your life return to normal. I often feel like I live in the WORLD OF ABBY NORMAL. My PC, will often say to me ,"no don't take this med or that med as they are worse than the cure." Plaquenil was one she saved me from the rhummy putting me on years ago. I looked to see if you listed any meds as I'm so sensitive to meds and wondered if one was making you lose weight. My topamax made me lose so much weight, that I would cringe when people would say would are way too thin. I'd try to hide in big clothes and then I stopped it gradually. Then I needed it again For the migraines, so I yo yoed with my weight. Now I'm just right. take care and I wish you well. Blessings and Love~ BellaMia~

JUST WONDERING? Any of you get fits of hiccups? I don't get them all the time, but when they happen, THEY HAPPEN! Once, I had them in the middle of surgery and the thought I was having a seizure. They went on for weeks. Like I said when I get them I get them, and they hurt and can be loud. Anyone else out there Don't hold your breath now! Blessings and , BellaMia~