tinkerbella

Janey, I know this story all too well sweetheart. I'll say one thing you can judge a good man by the way he treats his mother. If you are counting red flags now watch out. Being alone is not the worst thing in the world. The relief of not having someone making us walk on eggshells is wonderful. You can't change anyone, they might say they will change but unless they are fully committed to you and understand this is REAL, till then door is wide open and they can walk. the key to a good relationship is communication and that becomes your foundation for life. I think you need to talk to him and decide is he your lifer. If so then the gates of your illness need to be made clear for him to understand. "POTS Made Simple" a Guide for partners. Maybe your doctor can start by writing a letter or mine said let family read your medical notes and if they don't get it and something is really wrong. Janey, I wish you the best, other than that simplify to paper plates, less clothes, just stuff that you need. Ask your higher power for guidance and the answers will come. My worker is looking into this for me. I'm thinking of doing all of that. It's hard to let go as, I'm a pack rat and my kids have just accepted that I'm ill. If your disabled you may be able to qualify for a PCA to help you with some of these things. Remember you want a partner who will say this, "come grow old with me, the best is yet to come." Bellamia~

same with me, also l when i smile a lot of facial tremors. Left side of face goes numb also like a stroke and will droop. in the belly i'd swear i had a baby in there at times. lol! bellamia~

i with jana. when i do fall asleep at the hospital, and they walk in and wake me for lunch they scare me and then i feel hung over. at home i'm told not to sleep at daytime. bellamia~

THANK YOU Melissa, I can't thank you enough for for info and time in helping me. I'll have to forward all this info to my doctor so I'll know for the rest of his Posts pts. as they are getting more patients in our area locally. This is my cardio. He loves any new info I find to help his patients and he directed me here to start with. Blessings and Love, BellaMia~

same with me. i though i was lost in space here. i also edited my lengthy about me page with updates, updates were kept and evervthing eles is gone. i've made updates before and everything was fine. what i had written before was gone. i did start a new med that day and then i blamed it on that. what did i do wrong? has this happened to anyone else? I just don't know if I have the energy to rewrite it . bellamia~

rene, since i've left the hospital, it hurts to eat. i only want liquid. i only lost 2 lbs. but all my liquids have high calorie content. the ensure i put on the blender with milk, next i'll add fruit to it, gatorade, chicken noodle soup, i need to listen to my body. it's grouchy now, stop eating at the first sign of pain. take my stomach meds as hard as they are to get in me 3 times a day. be careful with flaxseed oil, it contains estrogen, 3 tbs is a lot a day. many of us are estrogen sensitive and it makes our pots flare. i will take one cap a day due to this, and being allergic to the fish oils. make sure you take the slow fe on food first. be well bellamia~

RENE, no wonder you have been a mess sweetheart! hey, I was just in for 4 days.Too bad we weren't together! I was on slow flow Fe last starting last summer summer when my ferritin level was 4, as I could barely walk, or do any anything. It's a symptom when your iron is so low. I just had another test today as I started abnormal bleeding again. I started to have symptoms again. the doc said the combo is the best for people like you and I sensitive (i'm actually allergic to full strength iron pills ) Your iron is what make your heart work right. I was so low that they were going to do a blood transfusion. I started beans and other foods high in iron. Never take more pills or hesitate about taking then as iron levels and being anemic make you feel terrible. Google it for yourself and see. My ana is very high. They are always waiting for Lupus or sojourns syndrome or some autoimmune disease to pot out with me. HANG IN THERE GIRLFRIEND! I missed you and hope they are on to some thing. I wish you well. blessings and love, bellamia~

Dear Angela, I just got out of the hospital myself and read this. First, I prayed for your son, and for you. I personally know how hard this is maybe one day I'll tell you. Right now, just put your faith in your higher power and I just remember that when a Mom needs to be there something kicks in. I don't know how I've gotten though some difficult times dealt me with my children. Pack everything you need for you to be with him,. if you are able. Eat, drink lots, and take your meds. take notes about everything, most likely you've been exposed so, we'll just pray you stay well. If you cant stay don't give yourself a guilt trip, but have the dad, or another family member stay who will an advocate for him. You need to have an extra set of eyes over your child while in the hospital. usually they set up a cot for a parent to stay. I pray this will all go well sweet Angela. Keep us posted when you get a chance. My heart goes out to you. HUGS BLESSINGS AND LOVE, BellaMia

I use ginger candy from the whole foods store and flat ginger ale. zofran always makes me sicker so some reason, or it's the morphine they are giving me before hand for pain. It's hard to tell when your in pain and still sick and nothing is working. they say the scent of fresh green apples or lemons will also help. I wish I had just had some one to just sit by my side. My mom used to be so good when i was a kid and I was sick all the time. She would always be there and always hold my waist length long hair back and tell me I'd be ok. Make me tea and toast. Cold face cloth for me head. Blessings off to get watered for the day at the spa Bellamia~

Ramakentesh, I THINK MOST OF US know this is not a contest as to who suffers from POTS the most and it's interesting to see the responses. I have a, "SEVERE," Form of multi system dysautomonia. DO I WANT TO? NO WAY! I used to think the letter alone as it was hanging on my fridge would help my kids, family, friends, understand their mom was ill after I received it. It made me cry, when I first got it... We all woke up this week realizing the ugly truth. They don't even know if I can even be alone much longer and no one has room for me. So, to assume we all have the same symptoms is not necessarily right. My friend with Pots is fully functioning and works full time, with totally different symptoms. I'm going to stop right here as this is really a survey. I just wanted to make myself clear that I wrote what my HIGHLY TRAINED DOCTOR TOLD ME, as that was what the question was. I removed it as I come here for support not to be as you stated, "Sorry dont mean to annoy/cause alarm" and "I think the medical advice that you have received is inflammatory." I pray that you have more understanding for others living with pots as we are all different, and that your pots never gets like mine as I wouldn't wish it on anyone.... God Bless all of us! : ) BellaMia~

somemonkey, hey, that is great to know, thanks for telling me. i saw my doctor this morning and I'm his first to need a wheelchair. I was telling him how I thought I needed a ultra light and an PT eval. He agreed, so I said I just have the Pain clinic get me one. he said no, i want you to have a vascular pt eval done on you. i told him that's what he should do from now on before walkers and all equipment for all his patients with POTS. i also told him i wanted to start a support group as i used to run then for families with children with diabetic children. i said even though today i my not know the date, or be confused because of the side effects of the new meds I want to do this for 1 hour a week some how. he was going to ask the hospital about starting one. YES! Now if it could be on a day i'm there any ways, that would be another blessing. blessings and love, bellaMia

Thanks EM Those are nice, I have to see if they will pay. Have a wonderful day! BellaMia!

I was given the dx years ago but insurance would pay for the full testing. I had all the years of classic symptoms and always bleed forever. At one time the dr. gave me meds to carry to take the was afraid I'd be allergic. He said the testing can take years to catch in blood work. I was studied for about 9 months and was very sick, they thought I had lymphoma or some auto immune disease. Mt doc moved and I was left with a new doc at the Cancer center who dropped my case. He said don't take any blood thinners or I'll be in trouble. I did nearly die from an ectopic preg. on the table from loss of blood. I have many stories like that. Good luck to you. BellaMia~

I'm allergic to Penicillin also. FYI: As long as we on the subject of black box warnings I also had bad side effects to are the statin drugs for cholesterol. They also do muscle damage. Google them and read about them. I've been in the hospital all day and I'm a little out of it tonight with the heat wave Where I live. these have all been on the news in the last years or so. I Google everything before putting it in my mouth. Be we BellaMia~

I FDA Warns That Cipro and Similar Antibiotics May Rupture Tendons http://www.webmd.com/news/20080708/fda-war...rupture-tendons I will never take any of these ever again. I had pain so bad the lab work came back like I had run a marathron. I live with multifocal joint/muscle pain and nerve pain, but I knew something was different. After that my mom was in a nursing home for a short period of time and they were going to put her one that for the same reason. I spoke up and told my story. I asked that she be put on Zithromax. It's easy, 2 pills the first day then 1 pill each day for 4 days. Just one time it played with my heart, but they were really messing with my heart meds also. We stopped it just to be safe, since then I haven't had a problem taking it. I'm allergic to most. Good luck Maxine to your friend. BellaMia~

THAT WAS GREAT! Erika you too! "This Is Where I'm At" I have a special place where i keep my motivational quotes. my vision list. my hopes and dreams. I hug myself and pat myself on the back. I light up like a Christmas Tree each time I see my kids and grand babies. It is here I allowed to be free as a bird. My fighting Spirit is being is also here. Just to stand I fight. I fight to find out how to get the things we need being disabled. The best of my spirit has been tested over and over again. I'm done saying, "why me? I now say, "why not me?" I live my live to the fullest, realizing there's a reason I'm on this path. I don't fight the tide, I ride the waves now. I learn something new everyday. My life has become more enriched and I hope by what I have been through and I will then try to enrich others. It's been a long time now. It's time to let go and let God~ He's in charge not me. Blessings and love to all~ BellaMia~

I was also told you start to sweat you your body is about to faint. at night they found by 24 hour bp monitor I was actually about to or near passing out like I was telling them. When I feel it now in the day time if I'm up I sit down or lay down. If you in menopause you sweat twice as much. Meds are helping but there were times when I had to seep on towels and have a fan full high blast on me.

Hi ~Broken_Shell : ) If you could let me know here also the company that the they order from they said they would be able to probably help me. I have to have color to look cool to my grand kids! Was yours light weight? Because they said usually they make you graduate up to light weight. that's when she recommended the PT referral. Anyone else with suggestions let us know as many of us will need to know these answers one day. I went to the biggest store in the area and thought with the walker, being fancy smancy I thought it was going to be alright. Now I wish I had an PT eval for the walker as I have nerve damage in my hands and arms and the woman didn't help me at all she was more involved with other customers Now I wonder if that grip will be too much on my hands. so lesson learned here. My doctor had never had to dispense these items before. They are learning through me, as Pots is new in the suburbs. I was blessed to even be dxed by my cardio. Thanks everyone~ BellaMia~

Thanks EM, Could you list the model # and the company as the medical store said they would see if they could get it. I may have to pay extra for it. I'm really having a problem getting tachy. Thanks BellaMia~ If I'm going out it's in style!

Oh boy do I know what you mean. Topamax helps. I also bought a fan battery operated that hangs around my neck and turn it on when that bast of the heat wave starts and boy does that help. I notice feelings bring on a heat wave also. But the night sweats were soacking flood the bed then freezing cold. Worse than a normal night sweat. that's when my doc told me it was a double whammy. of disregulation of body temperture. Got to go catch my cab for the day at the hospital. BellaMia~

i use them when i wake in the night time as they lull me back to sleep. i had been told that taking them with all your other meds it wies them out of your body.

Let us know how you made out Kat. Sorry, my answer upset some people. I removed it and was saddened as this is where I come for support. I have a wonderful team of doctors and a difficult case of Dysautonomia including POTS. Blessings and love to all~ BellaMia~

Flop, Thank you you saved me from driving myself nuts tonight. Sometimes I just itch and have reactions from nothing at all it's crazy! I'll Google it and read all about it. Then ask my PC what she thinks. Oh my I haven't eaten, it's so hot here! Got to at least get more fluids and let the dog out. BellaMia~

Those are funny! most of the time I use one crutch and it's become a conversation, ice breaker for others to talk to me. They say, " what happened to your leg?" I tell them, "I have a neurolological disorder and the crutch helps me from falling all the time with my neuropathy, as I have Pots." then they always think that I've told them I'm on Pot. We start laughing and we begin, "pots 101" and end up friends by the end of the converstaion. They say, "I'm sorry," and "I say I would have l never would have met all the wonderful people that I have met if it had been for Pots." So sometimes it's a blessing and sometime if feels like a curse. I try to make the best of it all, because it's all out of my hands and honestly I know I've said this somewhere, maybe here but I thought it was called POTS, because your on the toilet all the time. When I was first dxed, I remember asking my cardio, "Is all this salt making my irritable bowel worse?" He said, "you have irritable bowel?" I replied, " It was irritable before now it just plain grouchy, maybe depressed so is it the salt?" He grabbed my shoulders and said, "Bella, it's the Pots, you need to go see the gastro person we'll get you right in, I'm so sorry that I didn't realize you had that problem." "Also, the mestinon we put you on is making it worse , with you have have no other options." LOL! POTS! Blessings BellaMia~ .

Thanks Flop~ I think I must have this also as I went into anaphylaxias after having catsan with iodine. Now I can't have Iodine or iv with contrast with out being premedicated and it's been so long ago I forget what the I was suppose to do ahead of time. I don't see that doc and when I use to have allergic reactions to I would never know what. the docs in the er would write on my back and watch it swell up and bright red it was called something that started with and e. Itch from lots of stuff. Take allegra 24/7 when your suppose to take it once in 24 hours, then flonase nasal spray, bennadryl for the break through itching. Should I go to someone for a dx? Come on my potsy pals give me advice so I sound smart at the docs this week. My docs are learning from me or I should say from all of you. Thanks~ BellaMia~ xxx's If I only had a Brain/ bear with me today new med today word finding is bad I know the word. I fill it in later.