But You Don't Look Sick!

[tinkerbella]

http://www.butyoudontlooksick.com/personal_essays/

ButYouDontLookSick.com : Personal Essays

I hate it when people say this!!!!!!

Hi,

I came across this today when looking for something else.

sometimes it the things I find by mistake that are the best

of all. THIS one story is about a person with lupus, using

spoons to illustrate their amount of time and energy.

I have always used a cup of energy for my day to

my friends and family. Recently, it has gone down

to 1/2 cup.

The whole website was a great resource. I'm sure many of

you have found it before me. I just wanted to share it, as I

noticed on their forum people talking about Pots. Would Be

nice if were listed under their medical conditions.

I got a good laugh at the funny t-shirts for chronically

ill, and enjoyed looking at their book list. THIS HAS

BEEN A VERY difficult past 5 weeks for me. Being

sick 24/7 has started to take it's toll on me. The

Florinef, side effects is getting me really down.

The zofran they give me in the hospital today, helps given

in a a hung iv. Last week in a shot not so well.

Then, when I sit or stand it starts up again. The wheelchair

ride was like a roller coaster ride.

My cardio wanted my PC to cover me with the nausea

med and she called in zofran. It wasn't covered and

needed prior approval and she had left for the day.

I was so sick that the kindness of a now friend/staff

worked on all of this including convincing the drug store

to deliver it to my house. They don't normally deliver, bless her

as MY CUP WAS DRY ALREADY......... and I was just hydrated

and very exhausted!

RANDOM ACTS OF KINDNESS..................... : ) ( : NOW

I MUST DO SOMETHING NICE IN RETURN, AS JUST

AFTER THAT ANOTHER worker volunteered to take me

to the hairdresser and my dog to the groomers *smile* I

just have to pick the day. I feel crappy today, but kindness

like that goes a long, long, way.... I'm Blessed and back home.

We decided to leave the acess to the iv in for Friday. I'll try

my best to keep it dry.... and my spirits lifted up by kindess

and that the nausea med will work........

DO OTHERS HAVE TO LIVE on these meds just to take a med?

I really hate putting one more med in my body.

Do others have problems with positional nausa being medicated?

I have another TTT coming up and if I'm stay on the meds will it mess

up my test as last test they kept asking are you going to be sick?

Have others been able to tolerate sodium chloride pills?

Doc told me they are very harsh on the tummy.

Not covered by insurance they were expensive.

Just wondering Florinef verses sodium chloride pills peoples experiences.....

Thanks ahead of time. Please forgive any errors here......

Feeling soooo sick,

~ XXXXX's Thanks for any help....

Hope you enjoy the link.

blessings bellamia~

[futurehope]

Hi,

I think the spoon story was on this forum a while back. I thought someone on this forum wrote the story?! Or maybe the author is someone on this forum?! Good illustration.

[bjt22]

I have not found anything that is particularly helpful for the nausea that comes from being upright/blood pressure drops. Prilosec helps keep heartburn from making it feel worse, and I try to eat (especially in the mornings) like I did when I was early pregnant...crackers by my bed, get up and about gradually, etc. Unfortunately, the only thing I have found that really works is laying back down until the nausea subsides.

[Kyler]

The spoon story made me cry for my son. The dyna kids web site explains it with a set number of marbles instead of spoons. I just hope he outgrows it.

He has already said things like "I am tired of being tired" - he says that he is tired every single day -all day - it stinks.

He had his first migraine from an eye exam the other day and he threw up from it. He has told every person that he has come accross about it since and keeps saying "I hope that never happens again". I said many many prayers that it was a one time deal but we will have to wait and see.

I'm sorry to hear that you are feeling so miserable.

The only question that I can answer for you is that the salt tabs made my son throw up and have diarrhea.

We decided against florinef for him as well because of the potential harsh side effects. Instead we nearly obsess over fluid intake - we shoot for a gallon/ day (he is 5'9 1/2 and weighs 180lbs. @ 12 yrs old) and his POTS doc said that if he drinks enough fluid it's OK if he urinates alot and we can slow it a little with 6,000 mgs of sodium. He said that florinef is just a fluid retention aid.

I work on an ambulance and i see many patients that take meds to counteract the side effects from other meds and becomes this huge web of badness ( if that's not a word-it should be). Don't get caught in the web if you can avoid it.

Good luck and i hope you feel better.

Serena

[potsgirl]

Dear Bella,

I am so sorry that you're feeling so sick, sweetie. I've been thinking of you and wishing the best for you. You are always so positive and caring to others, so I hope you're taking good care of yourself. I've heard the spoon theory before too, but the website with the tees and other items was fun to look at, and I just might order something. I love the 'but you don't look sick' stuff, and the 'got spoons?' tee.

There are a lot of people out here that you've helped, so please take really good care of yourself. Please get ahold of me if I can help in any way. You have lots of support here!

Blessings and positive energy your way!

jana