OCsunshine

Definitely a BIG problem.

As Dizzy already said, it's because the blood goes to the stomach to do the "digestion" job so we have virtually NO blood left up in our brains where we need it. Unfortunate, huh?

I always get a booth when I'm going to a 'real' restaurant that will take a long time. Booths are better for me b/c I can sit sideways and put my feet up. Speaking of that, I always wear shoes that are easy to slip off and on because I take them off while I eat so I can tuck my feet up but not make a huge scene about untieing my shoes in the restaurant. Ha ha ha.

Others already suggested eating smaller portions- definitely a good idea, but hard to resist when you are being served delicious food. I usually eat wayyyy too much.

If I'm with a group of people, I will eat slowly or just start eating my meal after everyone else is almost finished. Then I don't have to worry about feeling full and light-headed and like I'm going to black out for half an hour while other people finish their meals. So make THEM wait on YOU and then as soon as you're done eating, get the check and get the heck outta there before you fall on the floor. ;-)

Kim,

Yes I think it happens to most of us. During these times your body is just wiped out, and it might be due to lower blood volume and/or iron deficiency. Not to mention hormone changes.

I have improved greatly due to fewer periods (once every 2-3 months, scheduled by keeping my bc patch on without having the "week off" until I'm ready) and also taking "slow fe" iron supplement. Drink lots of fluids and take care of yourself. I know it's frustrating.

-Rachel

I'm not sure if you're specifically talking about endo pain, but as for a general strong painkiller (migraines and severe joint/bone pain) I take Darvocet, when needed, and it really helps.

Jacquie,

My family had the same "problem" with me for a while. Not my immediate family that saw me struggle every day, but my extended family that would just hear that I was "sick a lot" and they never visited.

I was a young teenager at the time I first became ill... I was totally bedridden and even sitting upright would cause blackouts. My extended family would say that I needed to "get some fresh air and I'd feel better" and my grandparents even bought me a BICYCLE for Christmas just to get me "motivated" to get my energy back.

Oh brother.

Just letting you know, you're not alone. People are ignorant. We just have to ignore them and know that WE KNOW the TRUTH.

Name: Rachel

Birthplace: Maryland, USA

Kids: nope

Pets: 1 dog, Lucy-Goosey

Favorite color: Red for decorating, Blue for clothes

Favorite flower: anything my husband brings me

Kitchen theme: Chefs/French

Favorite drink: Raspberry Iced Tea

Last TV show you watched: Law&Order SVU

Last movies you rented: The Notebook, Wallace & Gromit

Favorite food: Olive Garden's herb chicken, chicken & dumplins

Favorite TV shows: Medium, Grey's Anatomy, House, Monk, Survivor, Apprentice

Red or Pink: Red

Favorite ice cream: Chocolate Brownie Almond (Soy)

Favorite crayon color: Purple

Ever bungee jumped? Heavens no!

Eye color: Green-Brown

Hair color: Brown

Farthest you have ever been: Orlando

Siblings: 1 big brother

Last time you cried: 3 weeks ago

Favorite game: Ducky Wucky

Black or White? Black

Rollingstones or The Beatles: Beatles

Last food you ate: Bread Gnocci & Pesto Eggs (a Rachael Ray recipe)

Diamonds or sapphires: Diamonds

Beach or the mountains: Beach

Sweats or jeans: Jeans

Ever went skinny dipping: No

Married more than once: No

What book are you reading now: One Tuesday Morning (about 9/11)

Hobbies: Decorating, Scrapbooking

Favorite actor: Keanu Reeves

Favorite actress: maybe Sandra Bullock.. or Ashley Judd

Favorite candy bar: 3 Musketeers, Reeses

Ever toilet papered someones house: Several times

Gatorade: Orange

Favorite Fruit: Tomatoes (or are they a veg?), Cucumbers

Men with facial hair? Clean shaven

Steak or lobster: Neither, ew

Gold or silver: Silver

Favorite vehicle: Jeep Cherokee Sport

Favorite song at the moment: You're Beautiful by James Blunt

Most common phrase: "That totally freaks me out"

Dawn, this is what I originally thought, too. That's why I didn't try it when I first heard of the idea years ago.

But when my doc mentioned it again a few weeks ago, I thought "what the heck" and he explained that it's not about the blood pooling and BP. It's about tricking the kidneys into absorbing less fluid so your blood volume therefore increases.

My doc said that the blood pooling wouldn't be an issue b/c the angle is ever so slight, it's not like you're sleeping at a 45 degree angle or anything.

From reading the responses, it looks like some people can't tolerate it and some people benefit from it... so I just thought I'd give it a shot.

So my doc has suggested I try tilting my bed up at a slight angle, so my head is higher than my feet while I sleep at night. (He was throwing out all kinds of suggestions b/c I am hesitant to try more meds, I wanted some alternative ideas.)

He said that this was tried by a physician in the 40's and it worked for him. He noticed the effects so much that when he traveled and slept in a flat bed, his symptoms would all come back.

So, I thought I'd give it a shot... last night was the first night. It was odd at first (my husband put blocks under the 2 feet at the head of the bed, so it's raised up about 8") but I really didnt notice throughout the night, I was afraid my little dog might roll off at some point, but she was fine. Heheheh.

Since I slept like that last night, I had a 'good' day today, not much standing problems. But that is probably a total coincidence, sometimes I randomly have 'good days' you know? So I'll keep trying it and see what happens.

Just wondering if anyone else has tried this... ?

Yeah I'd say it could be the chemical/smell of the mascara or it could be the positioning of your head.

But most importantly, try sitting down while you do makeup! I bought a child sized desk (from Good Will) years ago and painted it all lovely. I use the drawers for makeup, cosmetics, etc... and put a fancy mirror on the desk. So that's where I can sit (on a cushy chair) and do makeup. I could NOT even THINK about standing up to do that!

Looks like everyone else is going through the same thing with Soc Sec!!

I got one of those short forms last summer (2005) and filled it out immediately and sent it in. The form said I would hear back in like 3 weeks, well of course I never heard ANYTHING (i was hoping that was good news) until December!!

Get this- I got the long form with TONS of pages to fill out on December 24th (the letter was dated Dec 22nd so it's not like it got lost in the mail) and said it was due back on Jan 3rd. That gave me about one week to do ALL of those forms, over the holidays, and having to mail it in slightly earlier because the post office was closed on some days.

I was LIVID. There was a part of the letter that said if I couldnt make the deadline, to call and talk to "any representative" to get an extension. Well I did that and wound up calling back 3 days in a row because no one there could help me and kept sending me to other Soc Sec workers that could give me the approval for extra time.

It REALLY put a damper on my Holidays (besides the fact that I was vomitting constantly, couldnt eat at all, and was in bed for weeks). AARRGGGHHH!!!!!!!!!

Anyway, I sent it back January 8th and have not heard anything back. Wonder how long it takes for them to decide if you are 'still approved?' Any ideas...??

He was tipping his head back? Well that's not right.

For using the neti pot, you should be careful to keep your head level to the side (chin and forehead at the same heights) so the saline runs in one nostril and out the other... not back into your throat or ears!

I saw the syringe in the stores (it was like a foot long), it does the same thing as a neti pot... it just looks different.

Anyway, I am still learning how to use mine, too. It seems to help by clearing out my sinuses.

Figure skating.

When I was young (age 11, 12, 13...) I took figure skating lessons weekly. I was learning to do spins and small waltz jumps and little tricks. It was SO MUCH FUN!

I was even in the small shows at the hotel where our ice rink is. Ahh.. those were the days...

Once I fell ill with Mono, NMH... and it all turned into CFIDS and a lifelong illness, the skating went down the drain, obviously. :-(

I have been once since then with my husband... I can go slowly around the rink once and then I feel terribly sick and have to stop.

GGRRRRRRRRRRRRRRRRRRRRR!!!!!!!!!!!!!!!!

Maybe I'll just get a nice frilly skating outfit and wear my compression hose and pretend around the house. HA HA HA :-D

Okay I just used a Neti Pot for the first time!

My Hopkins doc suggested I try it since I have so many sinus problems. It was a very strange feeling allowing the saline to go in one nostril and out the other. I couldnt do all 8oz of the saline (like the box said) but I did about 4oz on each side. I'll keep practicing...

I can breathe better at the moment, but my nose is a little runny.

Has anyone else tried this? Did you have any luck with it? Are the effects only immediate, or do they really last all day or all week...? I have no clue... I am just experimenting here....

So I am thrilled because today I found an organic food store in my area. It's been here for a while, but I thought it was like a plain GNC store. But it's actually much more like a grocery store, I was SO excited!!!

They have organic peanut butter, organic pasta, organic pasta sauce, organice this and that....

So my question is, what does "organic" really mean? Does that mean it's not processed? It's not filled with preservatives? Is it more "pure" than what you buy at the local grocery store?

I love the "idea" of eating organic food (I love the taste of 'odd' things like hummus and sprouts and whole grain foods) but am not sure if it's really helpful to my health or just a trendy thing.

Any ideas?

PS- While we're on the topic, does anyone have any favorite foods they have found in organic stores? I am ready to experiment!

I get very warm and my vision goes fuzzy and then black.

Once things go totally dark, that's it, I have about a half a second to throw myself into a horizontal position before I totally lose consciousness.

When I am coming in and out of consciousness, I can sometimes hear what's going on around me, but cannot see anything and am unable to respond.

Well I'd leave it to your doctor to provide suggestions on what is right for you.

I take Florinef, too, and I find it effective with atenolol (beta blocker).

Lexapro has also been shown effective in OI patients. Yes, it's an anti-depressant, but my neurologist was very excited about it when I saw him last week. I may try it soon and see how it goes for me. He told me it has a low risk of side effects.

Just a thought... but talk to your doctor!

I am terrible in the mornings: nausea, light-headedness, and many heart palpatations. It's just awful and miserable.

After I wake up, I need at least a solid hour of laying down and resting before I can get up and get dressed/ready for the day. Then another rest. My late afternoons are okay.

I feel best at night. Once dusk hits I feel much more at ease- not as many heart palpatations, a little more energy.

Of course if I abuse that 'good' feeling that I'll be back with the nausea, palps, and light-headedness before bedtime.

Morning = BAD

Evening = Tolerable/somewhat better

Yep, dilated pupils here.

I get comments on them all the time. I'll be paying for my groceries and the clerk will say "My, you have BIG PUPILS!" I'm like "yeah... weird that you noticed..." ?? It's just so weird that people notice mine all the time.

I have been told about the "attraction" thing, too. Guys have told me that since my pupils are dilated, I am attracted to them. I tell them it's a medical condition and they shouldn't be so flattered. :-P

I wear polarized sunglasses that wrap around- I wear them on cloudy days as well, and sometimes at night if headlights are too bright or if I go into a store with those harsh flourescent lights.

When I went to see Dr Rowe on Friday, as soon as I walked into his exam room he lowered the blinds on his sunny window and made it more comfortable for me without me even having to say anything. Gotta love that.

3 days for you, too? That is my max as well. If I go into the ER for fluids I have energy and better standing-stamina for 3 days.

Then the magical powers disappear. :-/

Yes, it's terrible. AWFUL, actually.

That's why my neurologist put me on birth control so I have fewer periods. Also, bloodwork showed that I was severely anemic during that time so "slow Fe" (iron capsules) help a lot.

Heating pads. Lots of rest. Lots of extra fluids. Lots of rest. Lost of rest. Lots of rest.

We were also in Baltimore this weekend when the storm hit! I didn't think we'd be able to drive home on Sunday (our SUV's were barried in over 2 feet of snow and the neighborhood is TOTALLY full of steep hills). But my husband was determined. He dug us out of all of the snow and we came home Sunday afternoon. Back home we only had about 2 inches at the most, it seemed... not very exciting... but we did get to see some deep stuff in North Baltimore!

Yes i did read the replies on my other post, sorry for the double-post and the confusion. Just wanted to make sure it went into the right strand...

I am discouraged at the thought of Soc Sec assuming someone is well enough to work just because they have a child. Morgan, I see what you mean about their thought process (as illogical as it is), but I hope that wouldn't be true.

I was just curious about what Medicare covers... was hoping to hear from other people on Medicare who have had children.

We are not necessarily thinking about having children soon, but I want to be fully armed with information in case we do decide to go down that road. If I did get pregnant, I wouldn't be able to function on my own, and I wouldn't be able to care for the child on my own (with my husband working a lot). I would have to recruit friends, church members, family... I would need help most of the time just to get through each day. If I lost my disability/Medicare insurance (like Morgan suggested could happen), I'd be totally frustrated and we would also be in a major financial crisis.

Getting discouraged........

I am 24 years old and have Medicare part a and b.

Does anyone know if Medicare helps cover pregnancy expenses at all?

I have been looking for this info online and haven't found anything helpful. Just thought I'd ask you guys if you knew anything about it...

PS- I do not have Medicaid (aka Medical Assistance). I used to have that but since I got married my husband's income counted against us. So I'm not talking about "Medicaid" I'm talking about Medicare b/c I have a disability.

Well in my experience- water aerobics is the only kind of real 'exercise' I have been able to do since I've had CFIDS and NMH.

I took classes (twice/week when able) for a few months last year. I always made sure I warmed up very slowly and then cooled down very slowly. We used styrofoam 'weights' in the water to build up arm muscles.

To me, the movements in the water felt SO good. I would be sore the next day, but a 'good' kind of sore, ya know?

Everyone is different- I wouldn't exercise without talking to your doctor(s) first. I had to fill out medical forms and get a signed paper from my doctor saying I could take the water aerobics class.

If I was feeling 'questionnable' at all, I would NOT go to the class that day. I only went on very "Good Days" and then still took it easy. I didn't keep up with the instructor- but that's what's great about exercising in the water, no one can really see what you are or are NOT doing under there! :-P

Hi, I am 25 yrs old and am on Medicare (part a and . I have no secondary insurance.

(I have searched for this answer on the 'net and haven't found any helpful information.)

Does Medicare cover Pregnancy? OBGYN expenses..? The birth..? Epidural?

Blondie,

Please don't feel hopeless! Like many others have already posted, we live with this condition every day and our lives are full of hope and wonderful-ness!

I became ill suddenly at age 13, and I am now 25. Like you, I also wondered if I'd ever be able to find a spouse who would deal with this chronic illness, if I could ever pursue my occupational dreams (working with disabled children), and if I could ever feel 'normal' again and have a real life!

Well today I have a wonderful and loving and supportive and ADORABLE husband! I get to help disabled children on a part-time, no-stress basis. And I do have a real life- am active in my church and my husband and I help lead our youth group.

My life is very fulfilling and BECAUSE I have this disease it is even MORE fulfilling! I never take health for granted. When I feel well, I enjoy each day to its fullest! I don't complain a lot because I know that even when I think I have things horribly bad, I turn on the news and see a ton of other people that have it MUCH worse than I have it.

And because of getting this illness, I now have much more compassion for people with chronic illnesses. I am not quick to judge- I am quick to get educated and understand. I love having this extra circle of 'friends' that are JUST LIKE ME!

So things will get better... keep posting on this site... and get a counselor that can help you talk stuff out.

With care and concern and HOPE!

-Rachel