tinkerbella

http://www.allaboutbirds.org/page.aspx?pid=2433

I like doing this ~ Hope you do too ! ; )

I had fun helping you ~ LET me know when you find out where it goes my friend ~ It must be link ~ lol

where are you trying to put the link? in which icon?

Bellamia ~

The link that got emailed out goes to the pic ~What a beautiful couple :) ~

Bren said it so well lemons ~ I wish I could give you a ((((((((BIG HUG))))))) and make it all better ~ I went through a lot alone @ first and I think it was denial because I had been sick most of my life. Now it's gotten real enough. TOO REAL! Lemons, you are a wonderful person~ Don't ever listen to family or anyone telling you that they would probably just kill themselves so that they weren't a useless mooch on society, or keep going even though they were passing out all over the place. Walk away and don't get dragged into the drama. The last thing we need is more stress ~ I believe there's a reason we all have this, I think we are all nicer people always ready to help a friend out, even if it's from our phone in bed ~PS: I WRITE on my hands and use WIPE OFF markers on my mirror to help remember things ~ I think that's ONE REASON why God gave us hands ~

<3 Bellamia~

Anything with my family is a precious gift these days~Making Memories can be as simple as a phone call, video chat, a visit, a day out to sleep over with the kids, an art party, laying down and telling stories, learning new things from my kids, and always l@@king for the gift in everyday. I used to be an aerobic teacher and now it's been years since I've been able to even go apple picking, on vacation with my family. The ocean is a place I love, and the sun is my enemy now that docs have figured out what is wrong with me. Life has changed, slowly to a place I thought I would never be~ Little things mean more to me now, saying I love you, not being afraid to reach out to others if they need to talk, and just being there for those I love ~ Life is too short ~

I'm very happy that you are able to be so active. Very nice pics~ I believe you have to upload the pics to flicker or photobucket. I think there is a post on how to do it.

Have a great day all ~

Bellamia~

hi bella - i hope you are able to purchase a sewing machine in the future, i spend five or so minutes at a time on the machine, i get there in the end though!

hi puppy - aw you kept twix, sweet story. i must admit i think if i fostered a dog, or animal i wouldnt want to give them back!

emma ~ Same with me, I love all animals ~ love + more love ~ Bellamia ~

I wish I still had a sewing machine ~I could no longer see to thread it so I gave mine away. Now I'd like to try to make a few projects, but may take me months in bed ~ lol ~

How adorable ~ I love my guy ~who follows me all around all day~ I love the coat you made for ROSY. Did you have a pattern or make it up~ My guy just got all his hair shaved off ~ Then it got cold here ;(

Welcome to this wonderful group linj10~

Sorry about all you are going through~ I can relate, I take b12 injections monthly, but was told by a neuro that there is a very good by mouth form that you can take every day ~ I used to take nitro for chest pain, long before anyone knew what was wrong with me ~ Soon after my dx. having (Raynaud's) cold hands and feet / dysregulation of my body temp.I was put on a time released calcium channel blocker that has decreased the chest pain~

They used to think that they might be Esophageal spasms early on ...now many years later it may be mitochondrial disease that was causing them for me.I also was found to have an extra sound a murmur @ 30. No one ever found that before and I had to have my tonsils out as an adult.

I wish you the very best of luck and hope you find some relief soon ~ Bellamia ~

Same here.... I was told my nerves are not in the right place before my pots dx. Once had 21 shots of lidocaine and now I'm allergic and to have it without the eppi.. I also have extreme swelling/ scaring/ complications at sites that they have used numbing agents or none any surgery. I now think it has to do with my mito more than POTS.

Interesting about being part of EDS....Hummmm....more food for thought....

Issie, Morphine dosen't touch my pain either when I'm in the hospital ~

It's been a very Hard Knock POTSIE Life for all of us.... :o :o :o :o :o :o ta da ~

Marcaine works bests stronger and longer ~

Claire,

Finally, my family gets it!!!!! WHERE have you been all my POTS life? lol ~ YOU are one hot potsie ticket ~ laugh on ~ I <3 it !!!! We must all laugh ~ Always and forever!

Bellamia ~

I'm sick as I write, too weak to go leave the bed to find the nausea meds, ibs BAD ;( CRAMPS, REALLY BAD too. Sorry you feel so bad too ~ SOME people wear sea bands ~

TY so very much..... I'm sooooooooooooooooooooooooooooooooooooooo tired I'm going to gear up, my allergies are so flared (sorry I sound like a baby) Talk to you tommorrow~ Have a wonderful night ~

bellamia ~ big yawn ~

THANK YOU Issie,

I'm a mouth breather for sure ~I thought it was a joke, don't open your mouth~ lol

I'll try a scarf good idea. Don't remember a chin strap ~

So the water is still ok in there then? Looks like I used it 6 1/2 hours last night ~

Fell asleep to a visual meditation on the computer. I SEE on youtube the show

you can buy a water holder that comes apart and cleans in your dish washer.

THEY should come that way.

You are a sweet heart ~

love you

Bellamia ~

OH DEAR SWEET ONE,GOD DOES HAVE PERFECT TIMING. Hope you find the answers you are looking for.Be well and feel well too ~

Issie~

Helppppppppp~ The nasal pillows....you can't open your mouth or they don't work ; (

Then, it looks like no water was used, ugg~ i'm very sic tonight after being out all day at the hospital.

DO I have to clean it every night? it is too hard for a tired potsie. I have a full nose and mouth mask ~

I LOOKED LIKE A MESS WHEN I TOOK IT OFF ~ GRRR ~

RESMEDH5i machine

i made a batch of gastrocrean for my face and pray to stay wrinkle free.

DARTH~BELLAMIA~

From what I was told my friend makes a small amount above the limit on ss to to be in one of those programs. I HOPE TO FIND OUT MORE DETAILS TODAY and will pray @ church. Thanks Rachel for your help~

bellamia~

Something I found out that no one ever told me was don't take with Grapfruit juice ~ My PC, advised me to stay away from citrus in general when taking my CCB when I brought it up. Anyway, did you

check out this. http://www.nlm.nih.g...ml#side-effects

I WAS TOLD, to always give it a chance unless my throat was closing up, a itching welting rash was erupting, I was falling down like a drunk, or having triple vision. When it's the weekend I call the pharmacy and ask them, as they have a better PDR than what they send you home with when you pick up the med. IF they are concerned, they will say it's time to call your doctor or once get to the nearest ER..I DO HAVE MAST CELL. It's an ITCH! lol ~

Would anyone know of any resources when a person is down and out and can't afford their meds. I don't know what to do for this person as my funds are limited with all my medical expensives.

I'm very worried and was just told about this from another good friend. Thanks for any ideas you can pass along.

We should have a list incase we need it for anyone here in the same position and maybe afraid to ask.

I guess my friend's doc can't give anymore samples and I don't know what my friend takes, as I thought of calling the maker of the drug co. and ask for help.

Thanks for reading and that's what good friends are there for.

Thank you all ~

love ~

BellaMia ~

I got the whole package,

with out a bow on top ~

BellaMia ~

It sure is ....got to nap now....back latter. Keep ing.

Shoegal,

Is FOD, a cpt1 disorder as well? I'm finding it so confusing WHERE I GO HAS NOT SEEN MY LONG CHAIN. I need to get more notes when I return to the doctor. Essential fatty acid co2 disorder of the LONG CHAIN OF THE MITO. First I didn't believe anything was wrong (denial) even though I WAS SO SICK, even had

to be admitted for all tests. Muscle bio is 20,000 dollars, so you really have to prove to have a case before they will do it. Did you have a

biopsy? My whole leg is around the incision site is hard as a rock. Got infected...hurt soooo BAD. I got sent back twice, as the

doc and nurses @ HOME thought I had a blood clot. There was a hematoma under there. I came back very high#'s. The hospital had

never seen this before, but I have all the family history and all the markers in myself.(multisymptom involvement) I don't know

where to find a local FOD group to talk to. Will see nutritionist soon.

MEANWHILE:

I'm losing weight very fast, anemic, sooooo tired,Cramps so bad, all the severe pots stuff & more, but in my heart I'm still that

girl who's the life of the party making people laugh right out loud.

I want her back. Bellamia ~

Here's a helpful link ~

PS: I DON'T KNOW WHAT HAPPENED TO THE MORE OPTIONS TO WRITE HERE?

http://www.emdn-mitonet.co.uk/PDF/COHEN701MitoAdults.pdf

HAVE A GREAT DAY ALL POTSIES & MITOIES ~ XOXOXO ~

It's a little scary when you find products you use and no one has warned you about them. I'm a little scared of what I've read,

better keep this one bookmarked. Have fun looking up products you may have and may be using and never knew anything about.

http://www.fda.gov/default.htm

Good Luck Issie,

I'm super sensitive too ~ Doc said it will only work right if you actually have it. Very frustrating