tinkerbella

Oh my dear sweet friend, I feel your pain and suffering, this illness is so darn hard. I send love LOVE, HUGS, and TONS of UNDERSTANDING along with a GIANT HUG ~ I'LL say a prayer for YOU ~ You know I'm only a click of the keyboard away ~ I miss you and all my other FB friends, but glad I got off before the big changes ~ Here there is always unconditional love and support. See what doc will see you over the phone or skype with you. I sleep with all my clothes on and pack the night before. Try to make things simple as possible. They need to see you sick to document it all to make your case. Maybe you can get someone to drive you in, I take a cab. I got charged once for not going and that was the last time I missed an appointment, unless I had the flu or was in the hospital. Hang in there, it's one day at a time.... and we're all here for you ~ Love, BellaMia ~

Well I know for a fact that on my dog the vet told me Benadryl would lower the seizure threshold, so I would think it would be the same in people also ~ bellamia ~

Sometimes you just have to be your own ~ Adovacate ~ and print out things our learn here and bring them into your doctor. Many docs are just learning through us. Others don't want to bother and take the risk, so I think they want to just play it safe because they don't know enough about how POTS works. Potsgirl93, thank you for you get well wishes and new friendship ~ You can count one me anytime for anything my friend ~Things that help are b12 shots monthly, salt overloading, fluids, fluids, fluids, sucking on ice is a good way to help keep hydrated, many small meals a day ~ compression hose, compression clothing, and I love coconut water ~ These are just a few things I'm sure you may already know them, but thought I would mention what helps me. The type of IV treatment I get know would be perfect for you going to school. It is a 2 liter bag with a pump that you get trained to use and you get a back pack to wear. Mine is set at 250 ml over 8 hours ~ This would make it possible for someone young going to School. Meanwhile you would have to decide on a picc line, midline, or a power port to be able to get your fluids and save your veins. I have take many ideas from here back to my doctor for further discussion. I'm sure we'll get to chat more in the future. Right now I need to bed and sleep in Heavenly sleep ~ I love you all ~ Sleep well also ~ HUGS, LOVE to all, together we a well make it all worthwhile ~

Welcome to this wonderful forum ~ I know you will Love it here ~ BellaMia ~

Hi, I've been getting it for almost 3 1/2 year @ the hospital 2 days a week. Recently the doc decided, I was not getting better and my fatigue was so bad that I switched to home infusions daily. I get 2 liters over 8 hours. Yes, it makes a big difference. I'm still bed bound, but I'm seeing little things. I'm still very dry, dry, dry... very Like they added potassium that I take orally and it make a big difference in the IV. I tend to run low. I had to start my fluids very slowly and be monitored very carefully in an infusion clinic for years before my doctor felt safe enough to let me go solo. My veins got so abused all those years, but it was my choice. I fought as hard as I could not to have this port. So 3 1/2 years later in less than a month. I got 2 midlines. First one got infected, second was in the wrong place, then a power port. I pray that this will stay clean. I'm allergic to so many antibiotics. My doctor said, I didn't fall asleep in the office this time and I did the last. So progress is slow, I'm still so exhausted and have to nap everyday from a simple trip out. When you go to the ER many will just give you a bolus IV and get you out as fast as they can. I don't feel those are safe. Mine were always slow to make sure I wasn't getting CHF. I only got Bolus IV when they had held food and fluids for test and the I flared in the middle of a test and needed fluids fast. I hope you can get help soon, more and more docs are giving them. Especially on the East Coast. I wish you the best of luck and If you live out my way let me know and I can hook you up. HUGS ~ BellaMia ~

LOVE what you did and wish our Holter monitors would talk like a GPS system does. No one takes us serious, even the neuro's don't all get it ~ When I'm funny, everyone looks at me in my family and gets so embarrassed. My friends think I'm very funny ~ So keep chirping potsyturvy.....I think your on to something good ~ Love, love, love, your idea and it put a really big smile on my face as I read it ~ Thanks for posting ~ BellaMia ~

Thanks Rachel HOPE you are well ~

Was it Roy Freedman at the BI? BellaMia ~

Sandy, I just love you and you other half is so lucky to have you ~ We are not our bodies anyway, we are what is inside our hearts ~ I think we have both been through a lot you Sweet Sandy Shell ~ I wish we could see you in your wedding glam ~ I Wish You Both Happily Ever Afters Forever and Ever ~ I saw my cardio this morning and he thought I looked better. I said, it the makeup ~ He said, I was falling asleep last time. We laughed about the antics of the interns and residents and what they had put me through while my doc was away the understudies will play ~ Told him I felt stronger on IV potassium than my pills. They had me on iv pot in the hospital the whole time. I can't seem to keep potassium in me. So, even though I have a port, I had to get a blood draw, as I don't have any extra tips to replace after a blood draw. And if this company can't find me a smaller back pack to carry around I may have to can them also. I looking for the: TKP 100 Bodyguard 1500ml Backpack If anyone knows how where online this infusion bag can be bought? It's the best size for us breathless potsies ~ Oh, wish I could go to this, My doc told me about this.... http://www.wickedlocal.com/chelmsford/features/x2046634537/Fundraiser-aims-to-ease-burden-of-chronic-illness#axzz1YhSvP5Wb Awareness ~ Awareness ~ Awareness ~ Take care all ~ BellaMia ~

HA HA HA ~ How did I ever miss these? they are all great ~ I'm GOING to my Doc too ~ I'm going to let him know that my dog lays on me all day and keeps me bed bound ~ Now that I've told him would he document it in my chart, as it's not written in there anywhere. I assumed he knew by my perma bed head hair and the sheet wrinkled impressions that are embedded on my face at every office visit . Thank Goodness, he is simply the B E S T. I'm also going to ask for script some coffee in my IV or at least a 8 oz bag to be pre-hug before the 8 hour infusion each day. Oh yeah ~ This is all good ~

Hi Sandy ~ We are in the purple port club ~ Mine is looking yucky ~ they came back today to give it another look over today. I was so bruised. tonight I was wishing they had placed it in a little different location. Oh Well, that's the way the ball bounces. I'm not going out and buying all new shirts. I was told it wouldn't show, but it does. Looks like a door bell ~ Ding Dong ~ I hope you are doing well. I didn't know these could scar also. I want to return to start and collect 100 dollars. Funny I got purple, as I can't have iv contrast dye. BellaMia ~ x'xx's

NO WAY ~ Me too!!! I tell everyone I'm pickled ~lol or in a pickle half the time When people say you look so good, I tell them, why!!! SPEAKING OF FOOD, I should go and try some today ~ My new thing is FROZEN BANANAS. Then roll in choc topping that freezes hard. Shell stuff and use colored sprinkles~ W O N D E R F U L D E L I G H T ~ Love, love, love this ~ BellaMia ~

People often forget that the Iron stores are depleted when all else looks fine. BellaMia ~

Sandy shell, I'm a portie now. Mine take 8 hours a day and have to drink regular fluids along with it. Helpppppppp, where's the nearest toilet where ever I am???? I wonder if there's an app for that? Besides the ask a friend one. What will be next??? lol BellaMia ~

Sometime it's the only thing that quenches my thirst ~ You just have to be careful not to drink so much in one day or mix it with a lot of ice in a really fancy glass ~ I like the glass effect when home. lol I'm always home. BellaMia ~

I SURE AM HUNGRY when is this party ever going to take place?

Thanks Sue, "I'm Sew and Sew so to speak" Trying to make to best of it ~ x's bellamia~

The itunes pod casts free lectures are wonderful to listen to. You don't have to subscribe if you don't want to. No sense filling up your computer if you can just listen for free ; ) unless you have tons of room. TODAY IS MITO AWARENESS DAY ~ "WORLD STAY IN BED DAY" http://www.stayinbedday.org/ Check it all out ~ L@@K and SEE ~ They are finding more and more relationship between POTS and MITO with patients who are exercise intolerant, but listen to the podcast for more details. BellaMia ~