tinkerbella

Issie ~ Were u taking them compounded? That is how my cocktail is written. We are still working on trying to get it paid $900 dollars a month. I'll compound it for free ~ I have a hammer ~ lol ~ We must laugh ; ) i was told when I do get mine, u only take it small amounts at first. I know it's gonna come. I can see it in my mind ~ Kinda like you must visualize the parking space , before you get there. BellaMia ~

Hi POTluck, I'm a mito and potsie ~ I sent you a bunch of info ~ http://www.mitoaction.org/search/node/mitochondrial+biopsy mitoaction is a wonderful site to search anything that they have done a conference on. Just put what you are looking for in the search bar and what they have will come up. You can listen to info or read it. I'm having a problem getting insurance to pay for my cocktail . I haven't had one in a bazillion years. lol ~ Also, My chain is complicated right now. I do believe that everything will work out, or there is a bigger plan for me to learn to help other's how to get their's, so we can have one big cocktail party together ~ Right now all I can afford to buy is a round of hugs for everyone ~ xxx's Bellamia ~

Are u starting out slow? Headaches are always worse with me with any "NEW" med and I'm a dizzy dame always ~ Hope it gets better soon. Think positive and happy thoughts, especially if u don't have many choices like myself. ; ) What color is the pill? There is a belief if the pill is a color u like ( color therapy ) it will magically make you feel better ~ I love the color of mine. I'll see if I can find the article. I DO KNOW HOW YOU FEEL, as I can't take beta blockers. ( @ least all I tried) They were all blah white. I love color and not nightmares that they gave me ~ But I LOVE M & M'S ~ http://www.colormatters.com/color-symbolism/the-color-of-medications

Hope you feel better ~ I'm allergic to lidocaine with eppi. Marcaine is so much better NUMBS YOU MUCH BETTER, but cost more. SOMETIMES, I just take the shots without the numbing angents, due to they can't find my nerves and end up giving me too many shots. I don't even want to tell you how many. xxxx's bellamia ~

My doc suggested one back in the beginning....after reading how people needed pacing after pacing and ablation after ablation and still needed meds. We decided together not to do it. Then I went to my neuro pots spec. and she said no, none of my pots patients have them. She said for the same reasons also.... SO, when in doubt, check it all out. Gather all your data and talk with your doc. Once in they can't go back. Good Luck with your decision. Everyone's situation is different, and there are some people with them on here. For me, now having mito surgery is not a good option for me at all. Glad we chose not to go that route. I'll say a prayer for you goodnuff77. Bellamia xxxx's

Mandy, My hand tinging has become a problem ....I noticed that after typing my left arm was tingling and my pinky and ring finger felt asleep. I went to bed thinking I would be OK in the morning and morning came and it was still there. I kept shaking my arm out thinking this would help. NO, it didn't and by a week later I was worried. It was different from the normal tingling.... having been an aerobic teacher, the words in my head kept saying what I used to tell my students, "Listen to your body, It's telling you something." I went to my PC all of this was pre-pots dx and I was sent for a emg of my arm and legs. I soon found out I had something called, "cubital tunnel", a cousin to carpal tunnel syndrome. The doctor was quite alarmed as he also found peripheral neuropathy in my arms, legs, hands, and feet. I was scared silly, as they didn't know what was wrong with me. I had many accidents of breaking my limbs from all this numbness since a child. We then started looking for what was really wrong with me. I was then sent to have a brace fitted for my arm to wear and if it didn't get better there would be surgery. I don't do surgery well, so I wore the brace all the time. Also the brace was a good visual to my little kiddles that I could not pick them up all the time. Soon after cubital's cousin, Carpal decided to visit. So, when tingling gets concerning get it checked out ~ Take Care, Bellamia ~

My ankles do swell, but as long as it is it not pitting edema and I'm watched closely that is OK. I was told it can tend to give me tachy (more) but, I seem to think I stay about the same. I get more benefits taking it. Where as before I used to be freezing all of the time. I'm still cold, but I now don't have to keep my mitten on at our visits and he doesn't have to turn up the heat just for my visit. We do what we have to do in this illness and it's not always easy. Bellamia ~

Mary, Please come it will be good for all of us !!!! lol I'm saving all my energy to do the group and I'm bringing my bed ~ Boy, wouldn't that be fun in bed with decaf coffee and tea ~ ANYWAY, MORE DETAILS TO COME ~ : )

I take large amounts of one. I take it for my Raynauds, chest pain, and for Blood pressure. Cardizem CD 240 morning 240 noon even though my bp is low in the morning, my other meds bring up my BP along with my body position. Sure beats popping nitro ~ I can't tolerate betta blockers and fludrocrortisone either. I started slow and worked my way up. Only problem is when in the hospital, none of the pharmacies want to give it to me the way it is prescribed for me and i leave all messed up. I can't take generic, it messes me all up. it's not the same. Good Luck ~ Welcome Aboard ~ Bellamia ~

I'm H A P P Y to announce that I have a location in Framingham, Ma to start a support group. The details are being worked out. I hope by next week we will have decided which building will be best. This is 30 miles from Boston and about 30 miles from Worcester, Ma. It will be handicap accessible. It will also be held on a Saturday Morning once a month to begin with. I hope that there will be members here who will be able to come and meet up with each other. My doctor's office has a large Pots practice and I will be sending flyers to the office when the details are complete. I hope to get Pots speakers from time to time. My doctor is interested in coming and speaking, as he is very big in the Metro West Area. Without him I'd still be walking in circles. Please, let me know if you have any interest in this group. I will keep you updated with the details... as specific location and time.... Hope to have more info by next week. Hope to see you there. Bellamia ~

Rich, Please take extra special care right now ~ Bring everything you need and more to your bedroom in a cooler and try to stay there as much as possible. Get well soon ~ ((((((gentle hugs)))))) Bellamia ~

Welcome Mandy ~ I think I'm in the lifer category, some of us have had this for most of our lives, but ran from doc to doc till me finally found a dx. I wish you the very best and I best I can tell you is that I do best starting one med at a time. I'm very sensitive to many meds. One @ a time is a way to see how it is affecting me best ( side effects wise). It is here you will find a wealth of information. Remember we are all a little different and you should run everything by your doctor. I myself can't tolerate any AD and others can. They give me very vivid nightmares, so they are on my DO NOT GIVE LIST! I hope you will get a tilt table test although my doc always say a monitor is just like a tilt table test. I need to answer the door, but feel free to pm me with any questions at all. Hugs ~ and I know you're going to love it here!!!!!! Bellamia ~

I'm a mess everyone. I have to eat 8 small meals and I'm so tired I eat in bed.... I'm falling asleep with food all over me. I've kicked my beloved pet out of the bed due to all the equipment in bed with me. I could never wear a scuba mask, so I'm not looking forward to this, but I have to change my thinking fast and pretend I'm a mermaid @ disney world. I used to pretend was a mermaid as a kid and love mermaids now. So, that's what I'll do ~ : ) Mermaid Bellamia ~lol

GLAD you're feeling better Rich ~ I have had pneumonia many, many times. I'm allergic to most antibiotics. Dr. Castells my mast cell doc has agreed-ed to test me for penicillin soon. She said it used to be made with lots of bacteria in it ~ YUCK ~ So, I'm not really sure how I'm going to do the appointment, but I've got a few weeks to figure it out. My cardio won't let me use my nebulizer or inhaler unless it's an emergency, due to my heart rate. Rich, it takes a long time to recover after pneumonia, so take it easy....and know you'll be extra potsie ~ Prayers, better late than never ~ bellamia ~

Thanks for all the info, you are all so helpful. Issie, they called today and are going to bring the mask you told me about. Lyn, I always hate the smell of new rubber/ plastic type things. Thanks for your suggestions about what worked for you, as you sound like me ~ I KNOW I'll get through all of this, especially with all of you ~ Thank you, thank you, thank you ~ love, bellamia

Thanks Issie for the tip ~ C L A U S T R O P H O P I A ~ Oh no I'm in big trouble!!!!!!!!!!!! Opus 360 does it come in an animal shape? I have to make the kids laugh....

No, I don't snore....but, just getting to to study is so tiring, it takes me two buses that I'm so exhausted, that I'm so tired that I don't show my normal sleep patterns of waking and falling asleep like I do at home. I have episodes of sleep paralysis, gasping for air, very, dry, dry, mouth, and dream like episodes where I act out my dreams. Sometimes these are very hard to catch.Thankfully my cardio made me go back a second time in 6 months. I can't wait to see the difference and pray the mask won't bother my face. With Mast Cell I have a problem with so many things. Fingers and toes crossed ~ Bellamia ~

I HAVE BEEN so tired forever....HAD 3 SLEEP STUDIES ~ Fallen out of bed, walk in my sleep, see things in REM sleep, act out my dreams, then get hurt. This TIME I was so tired getting there that I fell asleep before they put the equipment on me. They wouldn't let me sleep sitting up or on 2 pillows. At home I have a wedge. After the test, they let me go home, and said the doc will follow up with you, and said everything was OK. The other day, I got a call of my plummy/sleep doc saying I have sleep apnea. I was shocked!!!!! I told him I've been falling asleep everywhere. I fall asleep eating food in bed, on the bus, in wating rooms, @ the doc's, you name it.... Someone is going to come out this week and fit me for a "turtle" mask and setup a machine. I really don't know where it will fit. lol ~ Hummmm ~ Between the computer nurse, BP machine, Phones, oxy/pulse meter. The lifeline, computer to the outside world.....My "Power Thought Cards" by Louise Hay, My water bottles, pens, and box of fortune cookies that make me smile : ) Anyone else have one of these lovely machines? Bellamia ~x's

HANG in there Jen~ I'm so sorry this is happening to you right now ~ None of us need this stress. It reminds me of when they thought I had lymphoma a long time ago. The bills kept growing and growing ~ There were no answers, just that I also had a blood disorder Von WillandBrand's ~ WHAT WAS GOING ON?????? I was scared, had no money and went to the billing office~ It was there that I met the most caring Angel, who appeared as a man. HE told me, "Everything In Life Was Fixable AND Not To Worry About A Thing." I told him, I wished I had met him years ago. I learned a Huge lesson that day! I had bigger worries than bills, and the bills he could fix...Most hadn't processed yet. I was looking at the wrong picture or too big of a picture. Jen, we can't do this all alone. ASK FOR YOUR ANGEL to help you ~ I have found many that my higher power has time released one by one to help me, just when I was about to fall ~ We are all here for you 24/7 just by the click of the keyboard ~ Keep us updated and once it's all sorted out, pay what you are able and even ask if they will accept less ~ hugs ~ bellamia ~

When we lay down we feel things more than when we are up and active. My doctor told me this. Are you possibly eating anything with caffeine hidden in it that may still be in your system @ bed time. At one time I put a long list of items on here that people were surprised that caffeine was in. My heart will go faster when I first last down, but it hasn't adjusted from my active moving around heart rate. You might want to buy a oxy/pulse meter that goes on you finger so you can see what is going on with your HR. Walgreen has a good one for 39 dollars.( The sale ends today.) You're true heart rate is after 5 mins in each position. I believe our hearts flip, flop, and race while it's getting regulated to lay down. Also, if you take bedtime meds, it may be adjusting to that also. That's my 2 cents worth of info ~ Bellamia

Awwww, making memories, children are so creative and loving! Lucky You, enjoy each and every day with them. Try to always make happy memories into all of your days.

I'm glad you're alright...and hope others are too. I know after the storm we had last June, my 4 year old grandson would get worried every time it would get dark and think he was seeing a tunnel cloud when we were riding in the car... I finally said put the radio on to my daughter and calm his fears. Finally he stopped when he could hear that there was no warning on the radio. After that, we did have more alerts and warnings...For us they are not the norm. We have also had an earthquake enough to rattle your dishes last year. Some felt it and others didn't. For the most part we are very blessed. Where I am it's snow and rain. Slippery slop and I was suppose to go out and misconnections left me behind. I always feel that is a sign you're suppose to be home for some reason. My higher power looking out for me today. Have a safe one all ~ I can't see you all, but I know I love you all. Blessings and Love to all ~ Bellamia ~

As we are in chronic pain, my heart has been going out to people everywhere this week hit by the tornadoes ~ I wonder if any of our friends have been hit? Last June we had our first scare and did a lot of damage about 30 miles away. It was still scary, packing up all my medical supplies, food, the dog, water, flashlights and something to lay on in the basement. As I was watching the news tonight, a woman who had lost everything said, "God knows the bigger picture that we don't." I thought for a moment how strong she was, after losing everything. Sometimes, this illness gets us so overwhelmed, that I feel like I'm in the middle of a tornado. Thank God ( or whom ever you believe in), I'm not, but He's knows the bigger picture and he's leading me, cause he knows the way I need to go. I don't need to be living in any fear. I've got all of you right here for 24/7 support. I've got a wonderful family that I love so very much, I have friends, and the best health care team in the world. Bless all of you who may have been affected by these tornadoes. May you all be safe and sound. I just wanted you to know I'm thinking of all of you tonight Blessings and Love, Bellamia ~

Thanks Mary, I talk in my sleep and I have a voice activated computer ~ lol Thanks for the prayers, I know that God has me on this journey with all of you for a reason. I'm hoping that an apple laptop computer and an apple iPad will come my way, as their is an new app that you use with the two to write books really easy. All you have to do is pay for the ISBN # . Mary, I'll bet there'a a book inside of you too ~ I still DREAM BIG, as long as I'm sleeping ~ lol~ :rolleyes: Love you, Mary

I've been so tired, my nurse told me I feel asleep on her the other day when she was writing my notes. I've fallen asleep @ the cardio before and I sleep most of my day away. Sleep study came back fine, blood work showed I'm low again. I'm allergic to iron pills and it took 4 ever when my stores were a 4 last time to build them up..If I take children's iron, I tend to get iron overload (too much in my system) Doc thinks it's time for an iron infusion and time to go back to hematology ~ I'm scared nap time ~Bellamia