tinkerbella

thanks for your update and hope all continues to go well. bellamia~

Just wanted to say hello and give a warm welcome also. I couldn't take midrione as it made me lose my memory badly. I had to take it at early evening and at night time. I have a positive ANA and they think something else is going on with me also autoimmune wise. They thought I had a CMV viris, but couldn't find it. I have the battle with yeast and have way before the pots dx. Then like 25 years ago I went to a holistic doc and did the yeast connecton with my little daughter at the time. He said we had an yeast overgrowth in our body and we took this terrible med and eat terrible tasting food. Everyone made fun of me for doing this to my child back then. she was having ADHD type problems and finally had to stop it all due to all the pressure from people around me. Today you could do it, but back then it was not the norm... I was ahead of my time. LOL!!! I should cut out all sugars and carbs.. I know you will like it here and if you need a fiend I'm usually available and love to chat by email. This is the most wonderful forum I've ever found!!!!! Hope you feel better soon and find answers to all your questions. Bellamia~

I saw my PC today and she advised me not to get the H1N1 shot. She said as I'm 56 that I should have built up some antibodies to it already as it has been around for a very long time as I'm old enough. The other factor is that I'm so allergic to things she is afraid of what would happen if I got the shot. I think it's important for everyone to talk to their docs and decide what is the best option for them. What is right for me may not be right for you. So this is what I'm going to do as I trust her judgement, as I'm allergic to almost everything. bellamia~

Amy, we'd be quite a pair walking across a room together. I walk into everything and walk people right off side walks. I just fell again yesterday after my dive off my bed a week ago. hope you figure out your bruising... I just have to laugh or I'd go crazy. Take care sweetheart! bellamia~

Right on it Amy. Prayers for the whole family at this difficult time. I believe in miracles and the power of prayer. xxx's Blessings bellamia~

Welcome to the forum notgivingup, I don't know your docs but I just wanted to give you a warm hello and let you know that I also know that feeling like you have the flu 24/7 feeling. May you get your appointment and find some good help. Here you will find great friends ans support 24/7 also. Today I'm going to try to venture out of bed of a few mins and test the grounds. It is snowing like crazy here so I turned on my christmas tree that I never took down last year. LOL it's up forever now as it's an angel tree.... I'll say a special prayer for you right now that all goes well. I have to say them right on the spot so I won't forget. ( brain fog ) blessings~ bellamia~

My doctor wanted me to talk to another doc about a pacmaker and I said NO!!! My neuro said none of her pots pts has them, but when I first met her she said some have to. My cardio and I decided that I would still have all the other problems that I still have and it would not solve my problems. Along with ablations would be one after another, after another, so we have put all of this aside as a last resort. Bellamia~

Aubrey Jane, Wishing you a very warm welcome to the forum! I know you're going to love it here!!! 1. Do cold and the flu et cetera make your symptoms worse? Especially the tachycardia? Yes, I usually end up in the hospital after a flu. I usually get bronchitis from the common cold and need antibotics. I know now to nip in the bud or I'll be in trouble. I'm already in the hospital 2 days a for fluids so I can't fool around. Even then, it's play by play action with a team who check with my doctor on my HR, BP when symptoms worsen and when I need to be admitted instead of going home that day. I always pack a bag to stay. 2. Have any of you had recovery and relapses in POTS (I feel like I have)? Before my real dx. I had what my PC called flares, but I was never better. Suffered terrible anxitety which was tachycardia, only I never knew it, joint pain, fibro, chronic fatique, weakness on the left side of body, hypothyriod. Since my dx in 07 I've gone down hill way too fast. 3. Without getting to personal, Do any of you take the birth control pill without any problems? Wish I never did as Hormones made me worse, and when put on them last year to stop post meno bleeding for pre-cancerous cells my pots went into a full blow flare and landen me into the hospital twice. My pots specialist said many woman with pots are very sentistive to hormones and do best without them added. 4. I have read quite a few of you say you have Ehlers-Danlos syndrome. Is this a concurrent disease with POTS (I have never had it mentioned to me)? No one has said this to me as of yet. But I'm undergoing testing to see why my pots is so out of control besides the fact I can't take beta blockers. 5. Do any of your have problems with maintaining your blood sugar? Yes, my pots specialist said many pots pts. have this problem and I have had this problem most of my life. I wake all night long starving and need to eat. They keep a close eye on my blood sugars and for a while I was testing in the night. I found it too difficult as I have this bizzare sleep disorder going on that I don't quite know what I'm doing in the night anymore. I PC suggested no carbs, fruit or sugar after 3 pm. but I must say being bed bound I find it had to comply too. Or, have your tachycardia exacerbated by eating to much sugar? I don't notice a difference If i eat or not I still have tachycardia as some days I don't want ot eat as all. Maybe why I want to eat all night long. 6. Any good drink recipes for keep up your blood volume (I am getting so sick of gatorade!)? I posted a good homemade mix not long ago. I'll see if I can find it for you through a serch as I'm stuck in bed and lost my brain due to my fall last week. I wish you all the best with your Pots, as we are the same in many ways still we are very different in the way we all react to medications and treatments. What is good for one may not be good for the next person. Age may play a role also, as I've been playing around with this heart of mine mis dxed for I'll say my whole life. Always sickly as a child and when sick as an adult sicker than most. The GIFT, in all of this has made me a more compasisionate, sensitive, and a much kinder person in life. I try to reach out to others while in the hospital or here to anyone who is new, alone, needs advice, or friendship. We all share our war stories so to speak, we laugh, cry, and bond. These are the deepest friendships of all, as we all know what it's all about, been there, done that and pray for each other. We tell things to each other that people close to us don't or aren't able to hear right now. We also need to remember to leave time to find the JOY in every day and not focus on all the bad as good is all around us! We get by with a little help from our friends~ Just ask and you will find the support you need. Blessings and Love to all~ bellamia~

Is visual snow like white fire works going off as I have that starting, but not all the time. i need to get into the eye dr as i have a retinal hole that i've put on the back burner for way too many years and now it all makes sense. my heart goes out to your 13 year old. I never could stand the florescent lights when I worked and had to wear sun glasses till they switch them out also. This was when I was a very young woman working. WISHING YOU THE BEST and prayers for your daughter. Hang in there. bellamia~

YOU say your a weeble and you wobble and you don't fall down, are you just bumping into things all the time? that would make one bruise. I've been using that quote since my dx, I actually bought a toy that wobbles to explaine to my grand babies. Enough to Make Your Blood Thin: Dietary Supplement Dangers - Women's Health Support Forums http://www.womens-health.com/boards/genera...nt-dangers.html

I always run on the high side on the cortisol levels so to rule everything out we did a cortisol stimulation test recently and man oh man what a potsie flare did it put me into!!! I'm treated for lyme all the time just to make sure I don't have it as my guy is a real DOG! The best guy ever ` we've been through thick and thin together. we're two of of a kind... I'll love him forever and always! As lyme doesn't always show up positive, we treat and see if I'm any better. bellamia~

i just had my 3rd ttt test and they suggested another eeg? the one of the brain... I'm still having major brain fog since my bad fall on my head. i walk with a crutch or walker, soon wheerchair. i have fibro, chronic fatigue, peripheral neuropathy, pots, those are the big ones as the brain is down. biospy showed fibro type results.( but i didn't like that doctor. he would't let me watch.) bellamia~

I have it also in my ears, thought it was the new VOIP line with cable. doctor said it's nerve dammage in the ears from the pots as it's probably progressing. I play sound machines in the background to cover it up, SOME DAYS IT'S LOUDER THAN OTHERS!!!! LIKE today : ( I focus on happy things like I can play loud music and cover it up for a while. : ) then I smile! bellamia~

might mouse is right, and make sure you have a doctor anesthesiologist.i never knew there was anything but dr.'s. my cardio makes sure i'm at the best heart and surgical setting in our area for surgery. before i knew i had pots, after my gall bladder came out nothing wanted to work right again... now it all makes sense, but what a nightmare going home with a catheter in for days and other issues i won't put out here... good luck to both of you! bellamia~

Although I never USED to put salt on anything I would eat geen olives, crave to drink the juice they were in. Would drink salad dressing, vineger, pickles , the pickling jucie, hot peppers and drink that juice too. By juice I mean he liquid they all come in...I think my body was despertely trying to get all the sodium in strange ways I could. Oh by the way have you ever had pepper on popcorn along with salt? I want some now : O , but my dog can only serve kibbles and bits and I've had it twice today. I'm going to crawl out to hr kitchen and see what I can make fast as I need these flat veins to pop up so they won't use my av again and then i can't eat. bellamia~

Thanks Janie, You always have a kind word for everyone even though you're going through a rough time too sweets!!! I'm just laying in this bed freezing, stubborn as I'm not going to turn the heat on yet. The heated matress pad feels sooooooo good and my doggie is snuggled close to my body sharing body heat. I have to look straight forward or it hurts to turn my head, laugh or breath deep today. I'll be glad to go back to my hospital tomorrow. They are like my check in point and take really good care of me. I'm very blessed Janie. Someone one wrote this to me, "May Blessings Rain On Your Parade," and I believe that they are starting to happen to you right now.... I hope you are doing well and will add you to my prayer list. ~Janie, May Blessings Rain On Your Parade too!~ xxx's bellamia~

FYI Because I can't take Beta Blockers they tried me on a trial of Ibuprofen 600 or 800 to blunt the heart rate. (my brain is gone this week due to my fall off, "mount princess bed." ) I broke out with bruises on my stomach. ( my PC said that's the first place they show up when it's getting real bad ) so we cut the dose, then I started getting petechiae starting at my ankles and going up my legs to my knees. It had to be STOPPED and blood cultures x's 2 drawn to make sure I was not going septic. I learned interesting that I was on diflucan at the time and it interferes with all blood culture tests. All antibiotics and antifungal meds will interfere with blood cultures and the docs don't know this. MY portacath surgeon told me you have to be off all of these meds for 10 day before blood cultures can be done to get an accurate test. I was told to never take Ibuprofen, but once again we were running out of options.... bellamia~

I read all the printouts and google for more info. When I need more information than that, I ask the pharmacist to print their complete PDR info as it has much more than what you would get with your take home print out. Anything that goes into my body I find out what it is and may cause. http://www.drugs.com/sfx/florinef-side-effects.html take care all~ bellamia~

Thanks jana, maxine, julie, firewatcher, & shades of grey. It's amazing how much the support of faceless friends here mean to me these days... I've made several friends that I email and seen their faces and a few others have them as their avatars. How nice to put a name with a face. All I can say is what would I do without the comfort I get here as I lay in this high princess bed of mine before they take it away? TODAY'S the day I feel like a mack truck hit me... THANK GOODNESS it did not! I've been doing so much purging to simply my life...today someone is coming for the player piano. I can't pay for the upkeep and need the room. It's hard to let go, but I need the wheelchair to fit in. I'm giving lots of things away to people who are in need and I find it makes me want to clean out more that way. I found this little prayer that helps by Roert Schuller, in the book Time For Joy DAILY AFFIRMATIONS. "Lord (you can use whatever you believe in) give me the guidence to know when to hold on and when to let go and the grace to make the right decision with dignity." It's time to let go of a lot of stuff, I'd rather give a pair of antique kitten bookends to a little girl who fell in love with them than to a dealer who wants to give me 2 dollars. LOL! May we all leave a liitle extra room in our day for joy. xxx's bellamia~

I wasn't at my hospital... I was in shock, and I never should have gone there... I should have paged my doctor now that I think of it that was our DEAL.... That's what happens when you have no control over who is driving or if an ambulance comes to my house I have to go to the closest hopsital in an emergency. I don't drive anymore...I won a GPS less than a year ago. Today I said to myself why are you keeping it? Do you ever think you are going to drive again? I thought I'd be 80 and my kids would fight with me over the keys to the car like we did with my mom. This really stinks!!! I'll put the GPS on my wheelchair, cause I get lost everywhere... ; )

~thanks sweet maxine~ They did a meowscan, I still feel real ouchy : ( and keep forgetting how to post and use the control pannel. Bellamia~

Health Tip: Why Do I Bruise Easily? - Bruises occur when small blood vessels break and bleed beneath the skin. If you bruise easily, here are possible reasons why, courtesy of the University of Cincinnati's Net Wellness program: * If you take blood-thinning medications, such as heparin or warfarin; over-the-counter medications such as aspirin or ibuprofen; or certain herbal supplements. * If you drink too much alcohol. * If you have a vitamin C deficiency. * If you have certain conditions of the liver or kidneys. * If you have certain bleeding disorders, including hemophilia or von Willebrand's disease. * Normal aging. Drugs.com Med News What NSAIDS are approved in the United States? The complete list of approved NSAIDs is very long. The following list contains only NSAIDs that are commonly used: * aspirin * celecoxib (Celebrex) * diclofenac (Voltaren) * diflunisal (Dolobid) * etodolac (Lodine) * ibuprofen (Motrin) * indomethacin (Indocin) * ketoprofen (Orudis) * ketorolac (Toradol) * nabumetone (Relafen) * naproxen (Aleve, Naprosyn) * oxaprozin (Daypro) * piroxicam (Feldene) * salsalate (Amigesic) * sulindac (Clinoril) * tolmetin (Tolectin) Reference: FDA Prescribing Information MedicineNet.com

Do I Bruise Easily? - Bruises occur when small blood vessels break and bleed beneath the skin. If you bruise easily, here are possible reasons why, courtesy of the University of Cincinnati's Net Wellness program: * If you take blood-thinning medications, such as heparin or warfarin; over-the-counter medications such as aspirin or ibuprofen; or certain herbal supplements. * If you drink too much alcohol. * If you have a vitamin C deficiency. * If you have certain conditions of the liver or kidneys. * If you have certain bleeding disorders, including hemophilia or von Willebrand's disease. * Normal aging. from Drugs.com * aspirin * celecoxib (Celebrex) * diclofenac (Voltaren) * diflunisal (Dolobid) * etodolac (Lodine) * ibuprofen (Motrin) * indomethacin (Indocin) * ketoprofen (Orudis) * ketorolac (Toradol) * nabumetone (Relafen) * naproxen (Aleve, Naprosyn) * oxaprozin (Daypro) * piroxicam (Feldene) * salsalate (Amigesic) * sulindac (Clinoril) * tolmetin (Tolectin) info from MedicineNet.com

Thanks jana, the strangest part was I have so many bruiises from falling. They had to ask if I was safe at home and of course I was dating someone new. Everytime he would go to comfort me as he would forget how much pain I was in I would scream out in pain and pull away from him. I'm sure it looked like I was abused and they asked him to spend the night with me and wake me every three hours which was a nightmare as once again family was away. He could not understand how I could look so good and be fine one moment and then crash even though he knew my story. We got home and he wanted to talk all night long about how I couldn't possibly be that sick. That we ended up in an arguement that I had to say just STOP IT!!!!!! I'm in major pain and not well. This is my life and this is only a tiny piece of it that you got to see so leave me alone and I'm going to bed. I laid my cards out right up front when we met and I thought he understood. What a horror show, and now I said sorry and thanks for saving my life as I never could have gotten out of that position alone. You're a really wonderful person, but not the right person for me. You will make someone else very happy go find her. I'm here as a friend always but nothing more than that, it's too complicated right now.( But I'm still looking for mr. right. ) Today, I feel so depressed and started to cry and the infusion clinic when no one was looking and I don't know why. They told me I look so sore and stiff. Will see my PC on Monday to follow up.. as the clinic thinks I need PT. How can I fit one more thing in? When I fell asleep there today I had a night mare I was fainting and started to cry and yell. I think scared the man in the bed beside me.... It was so vivid and real that I woke up so tachy.... and today the man was a little older than me, and just pretended to not hear. I told the nurses and they said I've been through a lot lately and it was no wonder. I really think the florinef is bringing back all the nightmares I'm having again. I think I need a sleep study another sleep study and they need to write everything down as the last time I had one they ran in a caught me as I was falling out of bed, but never told the sleep doctor. They did tell him I cry in my sleep and did i know that. Anyone else cry in there sleep, talk, nightmares? My nightmare were worse on BB's but I can't take them. Haven't had them in a while. Has to be the florinef playing with my hormones. Having such vivid sreams is like not even sleeping at all. Jana, another bunch of angels did appear or should appear in about 3 weeks. A home nurse, social worker, and a personal care worker. The nurse said I should have gotten services years ago. Someone wasn't doing there job. Like the nurse who I had before who kept passing everything off to everyone else. I kept trying to be an advocate for myself...Having Pots doesn't leave us with much time or enery to do much after taking care of the essentials. Thanks for letting me vent... love, Bronken Bellamia~