tinkerbella

It's a water with chunks of coconut in it. You can google the ingredients It is clear. My tummy is blowing up from anything these days. Bloating, I need to go to the gastro BAD. Something is not right. I will call my PC in the morning as my left leg is swelling also. I don't do the coconut milk because of the fats, I was taking coconut oil for a short time but it made my cholesterol jump up too high. It does have a warning about sulfates on it and if you are allergic in small print. It must preserve the coconut chunks. Some people love the chunks, others don't. I love it in a fancy glass with ice. I've gotten more people to drink the stuff, you would think I worked for the company. lol Someone at the hospital just gave me an article on coconut water being the new rage in hydration. BellaMia ~

http://www.side-effe...tendonitis.html Today I can barely walk, I will go to the the hospital in the morning. I have had Achilles tendonitis for months I have had damage from levequin, lipitor they made me look like I had run a Marathon years ago. If you go to the bottom they talk about Mitochondrial Damage. Very interesting and while you may not know you have a problem, these meds may trigger a dormant problem. I'm seeing a link here. Will have to forward this info to my mito neuro. Bellamia ~

You can just use your i phone or i touch with a free app. I feel they work pretty darn good and with the i pod you just need good light. The i phone works off of the flash. If you want to pay it will keep track of your HR's. I just like to know what's going on from time to time. Less buttons for the kids to push on me. LOL ~ One day in the hospital I downloaded one and my heart rate was 160 and knew I needed help. They came in and measured me and it was accurate. Good Luck, I'm sure if you have a droid phone they also have the same thing. Bellamia ~

Don't you hate it when the weekend starts and symptoms start????? My left leg is swelling and hurts bad. Both legs have swollen and could be my CCB. I saw my PC last week and she thought maybe my fish oil that I take in place of a statin due to my muscle wasting caught from Lipitor years ago. I saw the cardio the next day and said I read that fish oil is nature's natural statin and could it be cause muscle damage. He said no, I was worried as my sed rate is 53 . I will call the doctor if the leg is worse in the morning. Just wondered if anyone ever gets one leg (left) this is my weak side of the body, that swells and hurts???? I know the answer, call the doctor. I'll elevate it and the fluid will go to my belly. Also, if it is my CCB like it was a few weeks ago, when I stop that I get chest pain with exertion so I had to go back on. Grrrrr. I'm feeling really Ouchy ~ Bellamia ~ ; O"

Thanks Rachel, I'm so blessed for all my friends like you taking the time to help me through this. It is a midline and not a picline and then will be a central line. All I know is I felt so much better when I held my son this morning for a great big hug. I garden has gone to weeds, my son was trying to encourage me to come out and weed. I can't do it anymore right now...maybe if fluids are on board.. : ) Thank everyone for the H O P E of a brighter tomorrow. ps. my grandkids throw water when no one is looking, I think I taught them. We are fun people!!! LOL! Let the fun begin ~ Bellamia ~

COCONUT WATER Goya brand is 99cents for their largest can. I showed the cardio and he liked it just would have liked the sugars to have been lower. It's chunky and I love it. Everyone SAYS I have great skin, my sister tells everyone it's the coconut water. lol I tell everyone I'm pickled from hydration and crave vinegar. I get it @ MARKET BASKET. They sell it on Amazon. If you sign up for Amazon.mom you can get free shipping on many items. You can be anyone related to buying for a child and buy other items. My sis told me about it. Bellamia~

Depending on what BP meds your on citrus juices are all out ...Some times they forget ti tell us. Sucking on ice is good as it slowly goes into the body keeping you hydrated. Bellamia~

What a B E A U T I F F L D A U G H T E R you have ~ HUG her for me. She is wise beyond her years ~I feel like I know her ~ BLESSINGS AND LOVE~ Bellamia~

Thanks for telling me, I will look for it. My prayers are with all of you ~ BellaMia ~

Welcome to the forum sweetheart. I'm glad you are here. this is a great place. W O N D E R F U L really! I'm told to go to the ER by my doc. I went when I landed on my the top of my head a few years ago and recently after hitting my head so many times night after night. I have no clue to call when these events happen. So I've gone after to make sure no damage is done to my brain. You just want to make sure what is going on, as there are many reason we may pass out. Going right away gives the best information. Hope you are feeling better. Many people are afraid of going to the hospital or doctor, because if you faint and hit the ground you loose your driver's license for so many months. I believe it's different for each State. My fist time was a near black out where I didn't hit the floor, so the doc didn't have to report it. After that I was not driving. Let us know how you make out. hugs ~ Bellamia ~

I'm so sorry to just be reading this now. I hope all is well, as you haven't updated this post. Please let us know how you are all doing and you are all in my prayers. x's and love, Bellamia ~

I FOUND I couldn't handle HFCS. When I would drink it I couldn't breathe. I now use propel zero and water . I also make health drinks with almond milk frozen bananas, strawberries, keifer, blueberries, and sometimes add coconut water and blend. ALMOND MILK has salt in it. Bellamia~

I can just see my grand kids now. lol my oldest who is 6 tries to press my lifeline all the time. I'll probably have to have my homemaker wash my hair. that could be a treat. Should be moving forward with all of this, I'm finding I'm caught in emotional mud and grieving everything I love and will be losing. A dip in the ocean, in the pool with the grand kids, should I get strong enough to garden again. I MISS THE FEEL OF MOTHER EARTH ALL OVER ME, I love dancing in the rain. Washing my dog and the bond we have built doing this. I feel so sad, I go back and forth in my mind. There's a ping on game going on in there. I know it's because of all my fatigue and they think I have mito also, but I feel like I'm losing myself or control of myself when I should be looking at this the other way around. Maybe it's because I live alone, who will help me???? Yes, I have a nurse on certain days, that ties me home I want to be free. I feel like I'll never find anyone with all this baggage now, and I'm not settling for the last guy who's begging to come back who can't remember my name and keeps calling me his deceased wife of 10 year's name. I need someone who knows my name and that I'm not taking care of completely. Back to why do you look so good!!! So, keep posting the tips, they keep me thinking and digesting all of this. God will provide. I feel the love here. Ty all ~ Bellamia ~

Thanks everyone, right now they still don't have an appointment for me. It's called a midline. I never heard of that before. I really don't want anything that in view of my sweet grandchildren who like to pull things. Also, how do people wash their dogs, take showers, keep it clean when you live alone? I must say I have been email the nicest member through the meet others program who lives nearby, and I honestly think she is a new angel that God has placed in my life to cheer me up. I just can't believe the magic that goes on here, that when one door closes another one opens full of life offering to help you when they are in the same boat ~ GOD IS GOOD and this is a little piece of HEAVEN to me ~ Thank you everyone, I love you all ~ Oh someone asked how it's gets covered, I assume it's covered due to chronic, severe, debilitating, form of Dysautonomia with all of the other layers that go with it. Bellamia ~

This morning the doctor decided I needed fluids everyday, 3 liters and I would be able to put a pump in a back pack and go places if needed. I'm so tired right now and the trips and wearing me out. They think I have mito and this will help me till I go into the hospital and have my mito full workup. At that time they will put in a central line portacath. Today I'm left with mixed emotions, as home I'll be with my dog and never have to get up and early and be there the whole day twice a week and spend time arranging the cab again to go back and forth to the hospital. The hospital is where all my supports are. I will miss them all so much. I know it is time to move on, but I'm sad. I love everyone I have worked with over the past 3 1/2 years. Also, I have only a few days to get my room ready to be an infusion clinic. I don't know what I need. Any advice? I have someone who will come in on the weekend and move everything around for me. Thanks for the help? BellaMia ~

The iron stores are a different test from the regular test. My pots specialist had caught this, I'm still not quite all the way up there and the doc and I were talking today about iron infusions. We were talking about a lot a lot of things. Bellamia ~

Have you been put on a med recently that causes muscle weakness and fatigue like a statin, nexium, clonidine, or the levequine family of antibiotics? Are you anemic or your iron stores low? I'm the same way they are working me up for mito. My sed rate is really high and my igg is high, iron stores low, all I want to do is nap. bellamia ~

HA ~ I feel like a prisoner and they say the heat has broken here I'm drinking Healthy Shakes Margarettaville style in bed ~ I need some excitement here ~ I go back and forth from here to facebook, watch hulu, I think I'm going C R A Z Y in all this Heat ~ I had a doc appointment last week when it was 102 out they picked me up 3 hours early then I had to transfer to another cab and then the doc took me early and I had to still wait 3 more hours for the cab to come back. It was about 1 hour each way. Crazy!!!!! That was a wasted trip.. doc didn't even look at the chart my doc sent ~ How do you read when you flip pages ????? Oh yeah I would really trust him ! I was told it's going to get worse so I can't even go anywhere. I feel so trapped ! Family is away on vacation, by the way, What is a Vacation???????????? OK, I feel better now ~ love you all ~ BellaMia ~*

Angela, I was wondering about you the other day. I too am sad to hear your new. Don't give up, think as positive as you can and know we are all here for you. I feel there is more of a ray of hope for the younger people here. Still, all of us must think positive and support each other always. When anything is really different my Pots specialist would say are there any pain issues out of control, have you been in the sun, IBS out of control dehydrating you, Are you keeping up water, salt and sports drinks, water and drinks need to be equal, count your salt intake, ( I can't add so I can't do that one, I'm so confused by all the different measurements and conversions), any infection in the body must be taken care of, if your blood iron stores that most docs don't check are low you will be a mess, My neuro checks them and no one else I was 4 one year ago and I should be 50 to make your heart work probably. Now I'm 22, and still feel like carp. so, sweet one do a full body intake of what is new and what is going on. If I go out one day it take me several to recover, meaning I'm dead tired. I hope this too shall pass with you, but remember the door here is always open and never closes. The L O V E is unconditional A L W A Y S ~ I will say a prayer for you right now ~ HUGS, BellaMia ~

Another interesting article. I did have damage done by a statin drug and the doctor made me get the records because he said most people don't really get bad muscle damage in the short time period like I was on it. My ck level was over 600. I think it was ck???? Something with a c ... I'll have to check. I should have done that first. Sorry ~ Long day and even longer tomorrow ~ They said my heart wasn't effected~ Mitochondrial Disease Symptoms http://www.articlesbase.com/alternative-medicine-articles/mitochondrial-disease-symptoms-4171662.html BellaMia ~ x's

Mitochondrial Disease - What is Mitochondrial Disorder http://autism.about.com/od/medicalissuesandautis1/a/mitoautism.htm finding stuff online and thinking ~ BellaMia ~

Hummmm, I'm thinking out loud ~ I spent about half of my life hick-cupping. My mom would always say when I was little that I was over tired. Made sense to me ~ I was always ~ When I had surgery once the young student nurse told me I started hick-cupping in the middle of surgery and the doctors thought I was starting to have a seizure. She brought it up as, I was having the hick-cupping going on for the rest of the week. When I would get them they would be long and hard. Very hard to make them go away ~ I would be so exhausted, trying every new remedy I could find ~ I wonder if any of you also had this affliction? Since my meds this does not happen like it used to but I'm so exhausted and with all the heat my head is killing me ~ Wondered if this was a mito thing???? BellaMia ~

Ah yes, but what a fight it is to get that magic gastrocrom.... It is so expensive about 800 a month. Most Insurance companies won't pay for the cream either. I finally got the oral solution approved and Trader Joe's makes a face cream without fragrance and is gentle. First cream that does not make my face break out. It is called "enrich," moisturizing face lotion SPF 15 you can go to the Mast cell web sit and get the recipe for making your own cream with the oral solution with this cream. I also bought their other cream that they sell at the cashier in a pump bottle. It is also unscented herbal blend with aloe. It is called, " Midsummer Night's Cream," it's a thicker and I'm going to use it for the all over body cream with the gastrocrom oral solution in it as well. The solution is hard on my body when I have to drink it, but really helps reduce the itching episodes. If I can get it into me in as the cream I would rather do it that way. I'll be playing chemist this weekend as I need to get some containers to store it in. It's funny about the scent thing. I used to go nutty over certain perfumes. Love to wear ones that agree with me and love to smell cologne on a man. My ex would never wear any. His loss. Now I've either lost most of my sense of smell or all of the allergy stuff is working. I would hate walking down the perfume aisle in a store, wher they attack you with the perfumes and colones. I would try to gently try to step back from sprayer saying " No Thank you I'm allergic, Please don't spray me." I believe I'm the reason they spray on cards and give them to you now. LOL!!!! I used to get a lot of samples that way ~ HA BellaMia ~ x's

tennille, I just said a prayer for both you and your hubby. I'm so blessed to have found you here, someone else fighting this battle with other crises going on, but we must TRUST that all will be OK. We must program our brains that the Good Lord or whom ever you believe in did not put all of us here in this group for a reason. Please, my heart goes out to you tennille. Please know you can email me anytime for support my friend. HUGS Bellamia ~

Great novel.. That is horrible, but I kind of know what you mean. They say the same thing to me press my lifeline button around my neck. I don't even know it is there! Those sound very scarey, they sound a little like when I go into sleep paralysis only I can't move at all I try to talk. I think I've be abducted by aliens or someone is in the room holding me down. Do you ever have that happen to you? Do you wake and have one side of your tongue bitten or sore? My tongue hurts so bad this today. I read that is a good way to know that you are having seizure activity. I live in the Boston, MA area. I have headaches and will feel irritable, forgot things, laugh at things that are not funny, feel like my head is in a double brain fog after and will be sore where I hit my head.. My visiting nurse caught on and said that is what happens after a seizure. Must be the dead brain cells acting inappropriately. You should copy that and take it to the doctors when you go next time. Have you had any studies done? And if not, how come????? I dislike ER's so much ~ BellaMia ~