tinkerbella

NOW IF IT COULD BEAM ALL OF YOU over I'd be one HAPPY camper.

Wow, I now have a personal telemonitoring program as of this morning. It take my vital signs, O2 sat, temp, weight, BP, and rates my pain, tips on diet if needed, and it all get sent by phone to the nurse who contacts the doctor when somethiing is wrong. The only thing is they wanted to average out my heart rate, I had to explain about how it changes and my nurse will have to now have my doctor go and talk to the company like he did for the VNA to understand Our Condition. This would be wonderful for more people to be able to be managed and be kept out of the hospital. If I was diabetic all that info would be sent in also. My scale is now bluetooth. Does anyone else use this monitoring program? It is to help keep me out of the hospital and catch and emergency before something goes wrong. I feel blessed to be able to have this by my bedside. They hope that maybe more pots patients will have this in the future. Bellamia~

Those nasty mast cells are driving me crazy ~ I've made a cream with my gastrocrom to try to calm down to itching all around my IV3000 that I'm allergic to that covers my port. I found a recipe online. Rich, are you a mastie too?

Hi Sue, It's been one ambulance ride after another. I'm so tired and I've missed all of you so very much. I hope I'll be able to pop in more often now.

I heard on a TV show that the best way to get your heart rate down and in control was to play the sound of a normal heart beat. I often play one for relaxation and for when I leave the dog alone. The belief is that your heart rate will sync with this soothing normal heart rate.

I've been gone too long and under the blankets so to speak since the mito dx. Then at Christmas one of my best friends passed away from complications from something minor. She was in the hospital and went to the bathroom and passed out and died. She was too young. The reason I'm telling you this is none of us know when our cards are up. She was healthy,and I always thought my family would be calling her one day ~ Life is short ~ Live what we have to the fullest!!!! Tell everyone you love, that you love them. Don't be shy, because you may never get another chance. Now I'm back again grieving another loss, but will be going to a group with her husband as one loss brings up another loss and another. I feel numb and I feel like those of us with pots cry harder than other people, longer than other people and others don't understand. Going to this group will be very hard for me, especially if I start crying. Can anyone else relate or is this just me? Bellamia ~

I took MILK out of my diet & was told to eat 8 times a day, "SMALL MEALS". I still get nausea, but it's worse when I eat more food. This may sound weird , but I keep making a hiccuping sound. My doc said it was my body wanting to vomit. I don't like to do that unless it really has to happen. Got a script for a new nausea med, as the last one was taken off the market, Hope my insurance covers this one. Sometimes I'd just rather drink fluids like smoothies ~

I <3 my pulse o2 finger monitor ~ I put it on when to give people a clear picture of what is going on with me from squatting to slowly standing.

It's like my heart is dancing and running @ the same time ~ lol : )

My nurses call it bounding ~ Even when it's @ a low 90 it will be bounding ~ I really dislike it in my ears That and the swishing sound ~

I can't see it sweet one, but maybe I'm looking in the wrong place. I just see a string of numbers and letters. I'm sure a pro here will tell us how soon ~ Bellamia ~

Thankful, It sure would.... Bellamia ~

How sweet ~ You must have a really kind <3 ~ I was going to ask how did you post that one? I love my dog. He's my constant companion. Bellamia ~

I'm basically bed bound. I now have a port and have IV fluids 24 hours a day @ home. I miss my hospital friends that I had made for 4 1/2 years. I haven't been the same since my dx: of the essential fatty acid and co2 disorder of the mitochondria on top of pots. I have a motorized wheelchair for community use. I don't have a car that it fits in and I don't drive right now. I take cabs and when I go with family I use my walker with a seat and use store motorized carts. I have a lot of friends and online friends. My family, kids, and grand kids are the ones who give me so much delight. My granddaughter was trying to cast a spell over video chat last night to turn me into a car so I could drive over to be with them. lol.... I hate that this illness has her living in fear that I'm going to die. I've been sent to the ER @ least 6 times since September by my nurses. Many of the times they treat you for a heart attack. Making us all worry, and I'm sick of all of that. I'm exercise intolerant, the glucose in my IV added a few extra pounds along with the salt. I wish doctors would just do video chat visits, as it's too much to take too cabs into the city these days. Then after comes the recovery. Sleep for days.... I think you have the idea. I do look for the gift in each and every day and I try to make happy memories with those I love. I only have so much energy and I have to use it wisely. I pray for all of us and our families. All chronic illness have a ripple effect in all of our families. Hugs to all ~ Bellamia ~

Another thought: are you a fainter or had trauma to the area???? Could you have or had achilles heel tendonitis and be bring it back up from a recent fall???? Also, are you on a statin drug or a antibotic in the Cipro/ levaquin family???? They can also in some people cause levaquin tendonitis. Good Luck~ With me it looked like I ran a marathon when they did the blood work from a statin drug and it started again from levaquin. I would go to you PC for starters, as PAIN = telling you that something is wrong in your body. When in doubt, check it out.

Try drinking tonic water....I have had cramping muscle cramping forever and when it is at it's worse I get bottle of tonic water and sip it s l o w l y. Having just been dxed with Mito and POTS also muscle cramping was a biggie on the Mito list. I'm going to drag my tired butt out of bed and go look at the bottles of Tonic water I have and see what they say on them..I'm back now, It's the QUININE tonic water. In the older days my doctor told me they used to sell just the Quinine, and now they don't. That I don't remember why. ( brain Fog ) Best of Luck ~

Hi everyone....I'm sorry I haven't been around more. Things really went down hill after my biopsy. Whatever energy I had, it really got depleted and I feel like crapola ~ What a journey this has been ~ Got my script this week for the Mitochondrial Cocktail Prescription ~ 17 vitamins compounded ~ I was told wait till you see the size of the box that will arrive. I'm waiting till I can call the insurance company next week, as they never saw this chain before The doctor asked me what my nutrition was like? I got kinda scared. I'm on the MITO IV PLAN now 18 hours day/night potassium/ sod chloride glucose..as more and more it just gets easier to live off healthy shakes and I'm too tired to eat. NOW with weekly blood draws I'm anemic and craving steak, potatoes salads, ice cream ....I have such cramps in my legs ....right down to the bones. I TOLD him I FORGOT to tell you!!! Told the doc I was having a hard time being foggy (Potsie) he said it might be from the MITO ~ I think I'm in DENIAL all over again, like when I was dxed with Pots

with my new port I have to keep my bed clean, clean ,clean!!!!! I bought some new sheets queen sized, but they were not deep pocketed. The colors + prices were great so I hate top sheets anyway, so I laid the to sheet sideways and easily tucked it on each side. NOT at top or bottom. I also have many layers of comforters and light weight quilted blankets, along with heated mattress pad. I freeze @ night without it and my little dog under the sheets. lol Then he gets up so I won't get up and sleep walk and faint ~. Cook, crock pot, toaster oven, George Forman grill, mircowave oven + try to freeze stuff in small amounts to make my meals easier.

Hi Katy, Hang in there ~ Good Luck...I hope you get some answers soon. I can't stand difficult docs who won't even explain what they are thinking, but you can get your notes and see what they were thinking and everyone is allowed a second opinion.~ x's Bellamia~

I have gone downhill in the past six months. I'm now on 2 liters of potassium chloride iv and 1 liter of dextrose iv a day along with all the non conventional meds. My dog and I live in my bed.Thank Goodness for my computer, Family and Friends who visit ~ My wheelchair : )

I'm so sorry you are feeling this way....I know how you feel and I just told another potsie the other night who was crying out of control that we have a harder time with our feelings and deepest emotions like crying. I have been told if I didn't stop crying so hard I couldn't go to my aunt's funeral by a sister. When my dad, died my ex husband now told me then that I cried too long and to get over it. Tears were made to release pain from our body and make us feel better. Our potsie bodies can't regulate all of that properly.That is why so many of us got mis dxed with anxiety and depression first. When we get situationally stressed out our bodies may overly cry, sob, uncontrollably and people mislabel us If it goes on too long it becomes a problem. Could there be something else going on? The other thing we do is laugh, we laugh long and hard. Look up laughter therapy and try to make your body slip into that. When you listen to laughing people you almost can't help but start laughing. Give it a try....There are some videos on the web and I used to have a tape of people just laughing that I would listen to. Get a series of the funniest tv shows and watch them this weekend or watch comedy movies. Stay away from doctors talking you into psych meds you don't need, psych treatments that could harm you. My cardio told me that many people have been mis dx and even doctors have been given these treatments when it was POTS. How sad, that this world has to educate all doctors about POTS and to STOP psych docs to learn the difference between depression, anxiety, and POTS. STOP giving pills and Treatments that can hurt them. Also, I don't want to brush off your feelings, but it you really can't stop crying I would go and talk to someone and see if there's something you need to talk out. I think all Psych docs, social workers, and therapists should screen all patients with anxiety that does not resolve with meds for POTS. There needs to be more education in all areas of the health field. Sending you Big Hugs to feel better soon. YOU will have lots of love and support here. love, bellamia ~

I also have numerous eye problems, yet almost normal vision. My vision will change from day to day. I HAVE flashes of light, lose vision, INTENSE COLORS @ TIMES, when I type the black turns to purple @ times, it drives me crazy, as the line will get wavy, I also have a piece of vision (cyst/hole) on my retina. My pupils can be different sizes, other times they tell me are they always so big? They are severely dry and I require plugs in my tear ducts along with Restasis eye drops.This last one is just WEIRD, I feel like I have ADD of my eyes...I can't just look straight ahead my eyes are always roaming even when I'm talking to someone. (((((crazy))))) try explaing all that to your eye doctor ~ lol I think it's dysautonomia and the eye spec, don't know enough about it ~ Most are being chalked up to varients of my migranes...with the added commet, we don't think you'll go blind from any of this, but continue to see your eye doctor. OK doc eye will ; ) Bellamia ~

Help, L@@king for that perfect bag for my 2 liters of IV fluid to carry around when out of bed, along with the pump and supplies. The bag that came with the company was made for Hulk Hogan or Super Woman. lol ~ The iv spec. says only to use a bag on one shoulder and not on the side of the port. She is very good and knows her stuff. So tell me what you all use for going out or running from room to room. I can hang a big bag on my wheelchair, but you all know what happens with a big bag on our back. Hope I haven't done any damage using the one I have already. I wonder if it moved the last midline that was up high. Oh well, can't look back... OK, tell me about you bags or backpacks P L E A S E ~ Thanks for any help you can give me. BellaMia ~

Yes, your cardio can and should if he is in charge of you Pots write an order for hydration either at an infusion clinic or at home. B12 is for fatigue and for neurapathy in our arms and legs and hand and feet. Feels like pins and needles and feelings are often diminished. Primary care gives the shot, some people get pills and often they feel a surge of energy after the shot. I'm so fatigued right now it just maintains me. If you are able to go without a picc and I would for as long as you can get away with it. I made it 3 1/2 years ~ I hate this port. Hate the way it looks and hate that everythingg has to be clean, clean, clean and I still have to depend on others to shower me, and wash my hair. I thought I was going to be able to go swimming. LOL ~ Now, my legs are so swollen they look like the left one is going to burst right open. That's the one I had the biopsy on. We'll see tomorrow when the crew of nurses arrive.Lately I feel like no one listens to me. Do you see my legs and feet? I don't think the skin can streatch much bigger... Good Luck and fight for what you need ~ If you need any help just call on me ~ I'll be there with swollen legs and feet ~ x's BellaMia ~

Alicia ~ Do you have hypothyroid? If not get tested for it and if you are borderline see if your doc will medicate you ~ All mine went away when I started thyroid meds ~ Just a thought, I do think through this fog once in a while ~ Best of luck ~ x's BellaMia ~