tinkerbella

you know it's hard as i live alone, but everyone with this horrible condition should have someone educated about this illness incase we can't speak for ourselves. i hate to say it, but i knew more than the nurses, don't give me this med at this time as it wipes out all the others, i can't stop the clonidine i'll get rebound tachy the next day, you know they are giving you fluids at the wrong rate, you need postural signs 5 mins apart, you don't give me double doses of mestinon because the computer is telling you to, noon meds at 3:30, it was a nightmare then they seriously dehydrated me, by lack of knowledge of pots. dehyration kills normal people, but really can take us out quickly. i'm still trying to recover tonight at home from the whole ordeal.

FUNNY THIS POST SHOULD POP UP AGAIN TODAY, as i just came home from my cardio after 4 days in the hospital when we were like passing ships and never saw each other. we made a plan when a doc does't get him by a page then i'm to page him till i get him. he was furious and went to checK his call log! then we talked that i have no choice about going on florinef or he said we'd be looking at a HEART TRANSPLANT, this is HOW SERIOUS IT IS FOR PEOPLE LIKE ME WHO CAN'T TOLERATE THE MEDS. I FINALLY GAVE IN AND SAID GIVE IT TOO ME ONCE AGAIN. BLESSINGS TO ALL~ BELLAMIA~

hi i'm also scheduled for my second one at BOSTON MEDICAL. first time there, but it looks like my doc is looking for more information, such as why are the heart tests normal (echo) what is changing. has here pots gotten worse or is it under ander umbrella of DYSAUTONOMIA. My first thoughts were nothing is wrong with me like all test have been in the past, but my doc had been picking me up off the floor like a rag doll all afternoom. Her FELLOW, who was very sweet to me, giggled through a very long pre exam. i learned there was a lot of new info about me. when THE DR. handed me the ttt table test to have done i was thinking, now what do they not blieve me? but after landing in the hospital the next day a bell went off! it was a haha moment and i was glad i was being reavaulated. Things are off and those who really listen when you speak, FOLLOW UP WITH THE RIGHT TESTS. good luck to us all.

Oh I get them every week now for a one year now, but now need two days aweek as the order just chaanged. The schedule had gotten messed up by my being in the hospital for 4 days and by hospitlist not upstanding POTS that I needed more fluids (sodium ch.) before discharge. I hate being in the er or hospital as they mess me up so bad. Also I usually should have had my B12 shot by now. Go to cardio this morning see what we can work out. Blessings and Love, berry tired BellaMia~

I have a cup of energy a day. I have to use it wisely and choose how to use my precious planet time spent in between the hospital hydrations 2 days a week, doctors appointments to manage all areas of my dysautonomia, flares that set me back and put me in the hospital, setting up cab rides, and staying in touch with friends and family. i'm basically bed bound, but one day a week i fake it the best i can with an extra pain pill, to do a family day with the kids and grand babies. I pay for it the next day, but it's worth the memories. This Friday we are going to the zoo, but I'll have my walker with the seat. I'll need to be very, very, careful as I just spent 4 days in the hospital from our last outing going to the beach. the ocean, that i hadn't been to the ocean in years. SO, you are not alone. neuro wise i'm failing and falling more and more. is it partly from all the meds? is the cure worse than the outcome? no, but the meds have really crappy side effects for me. quality of life especially living alone is very lonely. i think those who have love in the home do better. right now i'm so tired i'm falling asleep, must have been the long ride home in the taxi, that did me in. blessings and love, bellamia~

thanks for your reply, this is been a really bad day. could only tolerate gatorade today and then got sick all over again. thanfully, i go back to the hospital tomorrow to get hydrated again. i feel so crappy. i hope they don't keep me again. what a nightmare, sick on a weekend when they don't understand pots. everyone is facinated by me, but i'm too tired to teach when i'm this sick. i'm so exhausted! so dizzy just laying here. BellaMia~

i was told after i bought a ton of melatonin after years of taking it that it reves up the auto immune systeme. I was starting to become pre diabetic at the time and stopped it. i also have raynauds and it has gotten worse since the years I used it for sleep issues. sorry I every took the stuff, as we get it naturally from the sunlight. I used to have a sun box but the bulb got too expensive. Now I have some light bulbs that are in light fixtures that are good for you. . MY BIGGER PROBLEM IS THE SUN attenuates Tachycradia in Pots along with any extreme temperture changes and I've gone down hill quick since a wonderful day at the beach with family. I need help to cope as It landed me in the hospital for 4 days flaring up may parts of my POTS. Finally made it home late last night. Doc says NO SUN, I'm not telling my family that. I have to have a life. HELP ME PLease! How does one cope. No wonder I could never teach areobics high powered in the sun and feel like I was going to hit the deck and have the feeling of my heart jumping out of my throat. Summers it was outdoors, Rest of the year it was like a sauna. Blessed to be back BellaMia~

congrats to you also i just got a phone call for another one in august near the end as saw the doc last week and it's been down hill since. bellamia~

sorry rene for what you going through. my pressures are way higher than your's . i can't even walk across the room without dropping and heart rate 171. doc wants me at least 140 standing so i won't faint. wearing the monitor is stressful enough and i always get stressed and have high pressures.

congrats i can relate to you, as i fall under this big umbrella of dysautonomia and autoimmune. got word yesterday i need a reval of another TTT as i nearly passed out 4 times doing nothing. maybe i'm supposed to be on my knees praying. good luck~ blessings and love~ bellamia~

Thanks Jennifer for the information. I'm going to my pots specialist this week and maybe she can help me sort some of this out. I feel like my throat is tightening up a lot and heart rate reaches 171 at least when I'm able to reach my BP machine. I need to buy that watch people were talking about a while back on amazon. Thanks you are a wealth of information. Blessings and Love~ BellaMia~

I've got the uneven pupils also, it's very slight, but at the eye dr after the dilating drops my eyes take days to return to normal. (that's even with reversal drops) I also have a retinal hole going on. one doc says it's a macular hole and another says it's in both eyes. I only know I need to have this issue re looked at as this whole being sick thing and all these specialist being in the city, have put my eyes on the back burner. My retinal sp. always said, "I have a friend like you." "Wonder what she say when I finally return back?" I'm finding all our oddities very, very interesting. Thanks everyone for sharing. Yes, let us know how things go. BellaMia~

Hi ladies, I was formally dx with asthma over 15 years ago, then re dx with exercised induced asthma years later. Then with high blood pressure and high heart rate 2 years ago and put on a beta blocker that nearly killed me. I was already on allergy meds and inhalers. Then put on nebulizer treatments 3 times a day. My heart was out of control as first it was atenenol making me so sick and then put on a beta blocker. Even making me break out in eczema. Allergic to all. My doc apologized, as she said she should have noticed the symptoms as me being allergic. We stopped everything and sent me to another Doc. I just thought it was another allergy doc, till I read his card. He was an intensive care plummy care doc and sleep disorder doc. Well good I needed help in that area also. He sent me for those tests julie described. I flunked them the first round, but the tech made me retake them till I passed. I didn't quite understand that part, as I nearly passed out just walking to the appointment. Some man in the elevator asked me if I was OK? When I walk any distance breathing became a real problem. I'm a looker to all around. . Once the results were done, I had to walk back to see the doctor. He looked at the results and said, "you don't have asthma." I don't think you ever did." Oh Crap I'm thinking, then why does my chest hurt when I breathe and I'm gasping for air when I walk. The next test he sent me for was an echo cardiogram, and it came back showing I had a stiff heart or diostolic dysfunction among a few other things I didn't quite understand. Luckily that was the day he said, I can't let you leave without having you see a cardio." "I said good, my PC wanted me to have one anyway." That was the day he gave me two names and steered me towards the wonderful one I have today. The man who listened to me and dx my POTS. I also passed it by my PC and she said that's who she would have sent me to. I'll have to look into this mast cell activation, as I don't know when I had the antibodies for allergies done it was off the charts. Interesting conversation so looks like I have some work to do. Good Luck~ I'm so tired. ~BellaMia~

The same thing with me it was one eye. it bothered me so bad, as I was always known for my eyes. I hated looking in the mirror. I kept looking to see how much it would cost to fix my eyelids fully knowing I could never afford it. Also my chest muscles hurt so bad that they did a full panel of MG test that west off to the Mayo Clinic. I remember being on the Mestinon and telling the Plummy spec that since I started the meds that my drooping eye went away. He was surprised and now that I think of it the muscle pain in the chest is gone as upon waking my chest hurt so bad to breath. At this same time I was on strong hormones for a cancer treatment, that I found out masked some other blood work I had had. Re: check current antibodies from E Barr V. Now I wonder if it also masked the antiboties to to MG. I'm going to ask the doctor this week. My Pots/neuro in Boston. It's funny I have bad side effects from the Mestinon, but was so happy it fixed my eye. Blessings and Love, BellaMia~

my cardio wouldn't allow the increase my pc ordered for that reason alone. my heart is a ticking way too fast already, and he didn't want it going any faster. i'm glad there are several sets of eyes watching over my case. when in doubt, check it out! bellamia~

erika, i really feel for you as i struggle with this issue with my siblings and grown children. my doc told me they are scared, no one wants a sick mom, girlfriend, (he's gone) sister or whatever i may be. even some of my friends just don't get it. i found the more i talked the less i saw my family. i was heartbroken, as i was used to being with my daughter and grandchildren all the time. right after my grandson was born i had gotten so sick from the beta blockers (pre pots). i was trying to take care of my daughter as she just had the baby. i hadn't been dx yet. from there i went down hill very fast. she joked that what almost killed me was taking care of her. as that's when i couldn't breathe going over the stairs. i thought informing everyone about everything was the best thing, right? wrong! then my 3 year old granddaughter started to be the only one who who talk. openly expressing, "nannie i'm going to really miss you when you die." i would tell her that i wasn't going to for a long time and she would say, "i know but I want you to know that i love you and i will really, really miss you." no one else would say a word. other times she would say, "nannie, you're never gonna get better are you? or " can i have a picture of you so i can remember you, you know when, when you go up there." she would be pointing up to the sky. she did tell me at almost 3, "nannie we should be very mad at everyone else cause they don't understand." i could go on and on with things she says when no one else will dare most right in front of them and silent they sit. out of the mouths of babes comes wisdom. back to the talk with my doc, he said don't tell them much anymore. save it for the forum and a few friends. the more you tell them especially since they all seem to have some symptoms and won't do anything, just be happy around them. make happy memories to remember you by. be as fun as you can, when you are able, save everything else for others. then he said, "FAKE IT TILL YOU MAKE IT!" Things have been much better since that day. i told my daughter i had listened to a radio show that said you should live each hour like it's your last. one day a week when she comes out with my grand babies and her brother comes over i feel like i get to live that way. i know my mom must have had pots when i was little. she was constally sick, i worried my whole childhood away. no child wants to believe there mom is really sick 24/7. relationship repair down the road can be hard, i never knew i had pots till 1 1/2 years ago, but i know i had it my whole life. i guess i'm just trying to say we're all here for each other. family, friends, and just like the docs in the er they just don't get it. we make new friends here, connect, email, and today i got my first phone call from a friend here. that's how we get by, we get by with a little help from our friends. that's one more reason i wish we had a chat room here. good luck, you hit a heart string in me. i hope i didn't babble on too much! and thanks to my friend who made my day by calling. blessings and love~ bellamia~

now that i'm on thyroid meds i must admit i see less in the drain when i do wash it. i forgot to ask for a shower seat at the doctors last time. then i will feel safe to wash it twice a week, otherwise my hair gets too dry. going over the stairs is another issue when you live alone. i like to have someone in the house when i'm in the shower for safety sake. my best friend has had alopecia for over 25 years and has had to get hair weaved in. she looks like a million bucks. she's very ill also, i'm blessed to have her to vent to. so when i say i lose hair, she kindly reminds me by showing me her alopecia. then i know i'm blessed and pray for those who really have it worse off.

i had really thick, long, hair. the hair was falling out each time i washed it. my rhumy suggested cutting it. i cut it shoulder legnth with layers. bought natural shampoo/cream rinse witout the chemicals. don't color my hair any more luckily i still have my natural color. i thought blondes had more fun once as younger, my hair was lighter. i try to wash it only once a week due to as the doctor suggested not to wash it more than that. if i use a regular shampoo, i itch all over, but my head will drive me crazy itching. i'm on allergy meds 24/7. i found white vinrgar rinse helped with the itching. at least i don't have bald spots as that what my rhumy looks for with lupus checks. in my case pot they feel there's another auto immune disease going on like lupus, so when i get new flares i get rechecked. i'm just soooooo tired these days, but i need to make an appointment to get to the city. blessings and love~ BellaMia~

i'm so sorry to hear your sad news. you're in my thoughts and prayers at this difficult time. please remember to take care of yourself. blessings and love~ bellamia~

jana, just sent you my phone #. THAT'S HOW MUCH I WANT to chat. call me if you can. I'll try to find your # but things have been out of control. Love, BellaMia~

Oh well, thanks for letting me know. One never knows, unless you ask. NDRF is where my POTS/neuro said I should go I think I'll check that one out. Thanks, Rachel

earthmother, you are so funny. maybe I'll share a story with you one day. I just made a post that about something here. I noticed the time and realize my BP is very low so it may not make sense. I must go take my meds and I should have know when I couldn't even figure out how to figure out how to fix the title of the post. Oh, well BellaMia is falling down my fair lady! be back later. make me laugh geek! you don't look like a geek, you wear it very well.

Hi, I've been wanting to just be able to chat with members online at anytime about nothing in general. A few of us have been trying to figure out a chat room. Most have video, I know I don't want to be video chatting in the middle of the night. Gmail has free chat, voice, and video mail with accounts and you can see who is online if people you email are in your contacts. If anyone wanted to do that and you would just need to set up account. Just food for thought, as it works real well if your in the hospital and and you want to visit a loved one and they can't get there. you just both need a laptop/computer and and video camera. Helps me being so house bound these days. Other forums I've been on there is just a post where people can talk back and forth at all hours of the day and you can see who is online. I'm just wasting time today waiting for the insurance company to call me back as the cab messed up my ride the last time going to my POTS/neuro and I never made it, so now I have no ride. I need an emergency ride now. Would love times like this to just chat with my new found friends here who could relate. Any others here just want to chat? maybe if enough of us friends want to, the The Forum will let us know if we can do it here in a post, or could create a chat room here. I know many of us are up at all hours of the night, but there are days like this that I'd sure love to just chat with friends also. Blessings and Love, BellaMia~

I only want a chat room when I'm on line and I hate to say it, but have heard how easy it is to hack into people's facebook's accounts. That's why I'm not there. You think your page is set to private. Just Google how to get into private pages. I really don't want my life an open book to the world to anyone that is why I choose to come here. I can just tell what is going on without my whole life being exposed. We could just start a post anyone up for just chatting? and that post be for chat. They do it on other forums. BellaMia~

You're very welcome bluesman! Remember, I get by with a little help with my friends! :) . I'm so glad I found my way here. Or should say I'm sorry it took me so long to be post because I was so scared when I was first dx. and lost what I thought was the love of my my life shortly after. I quess, I'm just learning to stand on feet doing lots of things by myself alone and I'm learning I don't juggle so well. Stace, I'm still looking into a middle of the night chat room. My son told me about how to set one up but it's a video one. I'd scare you all in the middle of the night. I don't want to be a controller making everyone setup a gmail account, but it is free and has great user tools. If you have an ipod you can also use gmail as a phone to call others online with gmail. I'll check again today. I think he said skype had chat rooms. I was real tired when he was talking to me so I need so I need to find out what is free. Hope we'll be all chatting somewhere later in the night if not here. Bellamia~