DancingLight

Katherine,

This is really interesting...

I can't tolerate Advil or Aleve on my stomach so really haven't given them much of a shot and just stick with Tylenol.

You pretty much know all there is to know about POTS--so I'm probably saying something you already know. I just know people take Advil and feel better on it b/c it acts as a vasoconstricter.

I can't imagine it could do this to you that fast? And make your BP go higher too fast or something? I'm totally making this stuff up! I am sure you're not imaginging it or having a panic attack, but they why is a big question!!! Isn't it always? Ugh!

I hope someone here has a better answer than I do!

Emily

Kristen,

I am so glad to hear your story! That is amazing! Interesting to hear also that they are better tasting than buying and making your own mixes. Mom and I were just talking about that tonight--whether she should try making stuff or not. But what you ordered sounds so amazing.

I am just glad it worked out so well. This bakery is just getting started and I am sure she would LOVE to hear your feedback. The woman is 28 years old and she is doing this! Kind of amazes me. If you type in Molasses Bakery in Google you'll find their blog come up right away...with guess what? More recipes for yummy treats! You're supporting a small, organic bakery which is such a good feeling to me! Not to mention this woman's dream.

Amazing that they arrived right on time. I may have to order these as a graduation gift for someone who is a minimalist but eats gluten-free! They would be a real treat. He's impossible to by for and would love that the cookies are organic, etc. Mr. California Granola who just got his Ph.D and what the heck to buy for him???? Now I just might have the answer!

Thank you for 'reporting in' Kristen! I'm really excited. I think though, that I just can't wait until my birthday in OCTOBER to try these goodies!!!!

Later alligator,

Emily

corina,

you crack me up!

virtual eating would also mean not packing on the pounds! lol.

em

me,

i wish i had an answer to your dilemna--so that just buying a make-up product wouldn't turn into such an ordeal. it would be nice to have one thing be easy for you!

i'm going to give the jergens a shot i think. b/c like kristen said it is derm teste, non-comedogenic and oil-free, all important to me.

i couldn't find this sort of info on the l'oreal packaging that my mom had. i did try my mom's l'oreal (for medium skin even though i'm far from medium) and i went to the dentist today--after just one use the dentist and all was saying how much better i looked than last time i was in! maybe it was the lotion, maybe the blush, maybe i'm doing a tad better, i don't know!

sometimes i wonder if i should bother and get all wrapped up in whether to put that energy into it...i start out gung-ho and think i'll be able to keep it up but then i can't. i haven't felt like i could give it a shot the past three summers, but may this summer.

the jergens is cheap so if i don't like it i won't feel too terribly.

i'm going to ask my MK recruiter about the MK too and see...it's one tube for face and body...so that could mean less energy output!

i'm totally rambling...

oh, the l'oreal, to me, was really greasy and it felt like my face never dried! so that's why i defaulted to the jergens. if i place an mk order, i'll give mk a shot next.

melissa--one other possibility if you really want something just on the days you go out? there are some really cool new bronzing powders and highlighters that you can put on with a few strokes of a brush and be on your way. i'm going to learn how to use them soon (the mk ones)...so maybe that's another way to give a boost on the days you feel like it?

i only put blush on right now, but it doesn't cover the pallor that is for sure.

sometimes though, i'm almost grateful when at least how i look is congruent with how badly i feel...then i don't hear...oh but you look great!

anyways, melissa, i wish i knew more about specific ingredients to help you. the only option is obviously some sort of small patch test on your face with something like the jergens. or just to maybe try a bronzer/facial highlighter in powder form (do you react to powders?)...

just let me know and i'll find out what i can. if it would brighten a day for you i'm in! i was surprised given all of your craziness medically that you were interested in even giving this a go...let me know what i can do to help.

to my fellow pasty white friends, and a very tan kristen,

goodnight!

em

Kristen--Yes, you do have to look a little bit carefully at the ingredient lists, but I emailed the woman last night and she emailed me right back. So, I think she will be helpful with any questions...

The white chocolate has dairy in it so that does it for those brownies if you need gluten-free and dairy-free...

They also have an oat-quinoa thingie--and of course it is debatable whether folks with celiac can tolerate oats, but her husband and sister-in-law are both celiacs and she uses the oats that aren't cross-contaminated.

Nina--a lot of the desserts from Mr. Ritts are not shipped so I was excited to see this option come availabe from this bakery. You are lucky to have close access to Mr. Ritts. Also, this bakery has more dairy free items I think.

Melissa--thanks for fixing that! I never could figure out why it wouldn't take links I posted. DUH!!!!! I, too, wish you could eat these treats.

As for breads--We just recently discovered two new brands and both are whole grain instead of the white breads that most rice breads are---

Ina Garden and Le Garden. They are really, really, good!

Emily

I know there are many of us who have had a lot of success with dietary changes--especially wheat-free/gluten-free and/or dairy-free.

I just learned about a new bakery today and ohmygoodness do the desserts look DIVINE!

They are very pricey, but it looks like each cookie or brownie is very large in size--so about the same price as if you would go to a coffee shop and buy a brownie (that is not specialty food) there.

Since I don't get to go out to eat ever, I already asked for these for my birthday as my 'cake'!

All ingredients are also organic.

The link is:

http://www.molassesbakery.com

How do I make this show up as a 'hot link'? I just tried, but can't make it work.

If anyone tries this new bakery, let me know!

I was drooling just looking at the website!

Emily

Wow! How do you find these amazing links! These products are amazing!

Emily

OOOPS!

I reported incorrectly! My mom likes L'Oreal better--seems to feel better and do a better job than the Jergens. I guess she read somewhere that this was the 'top pick' last summer. Of course, Jergens was the top pick two summers ago...but it was the only product like it!

Probably will have a new 'perfect' in the magazines this year! LOL.

Anyways, NONE make her break out. She just has really sensitive eyes--to eye products that I've never had issue with. Her eyes burn and these products make them burn.

That's the update.

I'm looking at the tubes right now that she ahs for Jergens and L'Oreal--both come in face style as well as skin tone (like fair, medium, dark).

To all of us looking fabulously beautiful even if we never leave our house!

Em

Kristen,

You are getting me motivated. I have to tell you I'm sick of looking at myself in the mirror! You are right....we have glare to us! People need shades we are so white. In college some guy (who was a total jerk) called me an albino. Nice.

Anyways, I need this escapism, can you tell?

Yes, Jergens did not have that face product at first so that is really nice.

Melissa....my mom just reported to me that she has had trouble breaking out from the Jergens face stuff and also from L'Oreal, but likes the L'Oreal better.

I may try the MK and I'll report back to you on that just b/c I can use their other products.

Kristen--I'm really glad with all of your sensitivities this one worked for you.

I, too, can't tolerate much stuff and so just stick with the tried and true MK--but then you have Melissa who reacts to that!

We're all so different.

I do think fragrance is a problem--for Melissa too right?--and I saw in one of the ads that something like Nivea has a fragrance, so I won't try that one!

Now, here's my question...

If you wear camis or bra top type stuff in the summer--how in the heck to you get the stuff on that part of your back and stuff?????

I don't want to be uneven either! Or have a white face and a tan body like Melissa.

Melissa--can you use a tinted moisturizer from Clinique or MK?

I hate that it's trial and error just like our darned meds! I'm glad you lucked out on the first try Kristen.

Glad you're having fun in the Carribbbean! LOL.

Em

melissa,

i can only speak for mary kay--and it sounds like that one has given you problems in the past--the one they make is for face and body all in one tube which is nice--but it's brand new this year so i don't know a lot about how people are tolerating it. still, it IS marketed as tested for allergy and safe for sensitive skin, non comedogenic, blah de blah. you can look on www.marykay.com and see what you think?

i worry about stuff on my face too!!!!!!

later gator!

em

Ah, yes, me again.

Just flipping through a magazine full of ads and there were a zillion ads for the gradual tanning lotions! So, just chiming in again--Nivea, Aveeno, Jergens, MK, take your pick!

Looks like this year we won't have to search the shelves b/c the Jergens is sold out! LOL.

Emily

Lisa...just try the stuff on a patch of skin that isn't so 'public' before you slather all over your face or something!!!! But, Jergens comes highly recommended and raved about and I would recommend Mary Kay of course and I am sure some of the other companies will have success with products...just make sure to test it first on a patch of skin if you are worried about how the color will look on you. Em

Just wanted to clarify a little somethig (sorry, the Mary Kay beauty consultant is coming out in me)....

Kristen is talking about a product that is a lotion that GRADUALLY over time, gives you a 'natural glow'. It's easy to put on and you just put it on like regular lotion after a shower. Over time you create a tan. You can put it on every day if you want.

Classic sunless tanning lotion like Nina mentioned is different in the sense that you put it on and within a couple of hours you have a tan. I used to love to do this when I felt better, but now I haven't messed with any of it since it is a bit more work. With sunless tanning lotions you need to be much more careful about not getting too much at the elbows or knees for example or putting it on unevenly. You also have to be very careful to wash your hands so that you do not have colored palms! You have to also keep up with sunless tanning lotions...in the sense that they fade quickly and need to be done at least 1 time, usually 2x a week.

For those of us with extremely low energy I think products like Jergens, Mary Kay and others that are the lotion style that work over time might be an easier go. I think companies are perhaps starting to think this for the general population. Mary Kay just phased out its sunless tanning lotion and replaced it with a product similar to the Jergens Natural Glow lotion.

Okay, enough on beauty tips! It's a nice distraction though.

I need to get rid of this under the skin swollen zit the size of TX on my chin before I can put anything on my face! LOL.

To a few less casper the ghost faces out there!

Emily

Kristen,

I think I need to get me some!

My mom loves that stuff and all the people rave about it! Mary Kay has a similar product out now which I think I may try too. I think other companies are trying to imitate Jergens now--Neutrogena etc.--b/c they made such a huge splash with that product. It was so popular when it first came out that it was out of stock everywhere. They are making the big bucks off of us pale folk!

Em

dsdmom,

Wow! I didn't know others found Zofran constipating too! Thanks for stating that. I try not to take it b/c of the issues I have to face later after I take it! But, I do LOVE it and it is an amazing med. Sometimes I'll take the constipation over the extreme nausea!

I just got some generic to try so I'll see if I think it works just as well--Sunfish--I'll report in!

Jacquie--hopefully now that it is generic you won't have to fight as hard for it.

Emily

Rachel,

How is that I've been around all these years and never seen those cool YAZ exercises! Thanks!!!!!!!

Em

Pooh,

Whew, that is really scary stuff. I had heard about the recalls and such, but reading your personal experiences makes it really scary. You are so in tune to your body and know how to be your own advocate, yet you still had no answer for the reactions you were having until now. I am so grateful that you did not have a worse reaction!!!

I've not been on the board much lately but when I do pop on I look for familiar faces--and yours is one that I've missed...so I'm glad you popped in. Also, I hope this information will help others and also help keep others safe in the future.

It's scary to think about the medications we take being contaminated, etc.

Hugs,

Emily

Anna,

Several of us on the board have either symptoms of and or confirmed diagnosis of Diabetes Insipidus. We use DDAVP or Desmopressin (which is the anti-diuretic hormone people with DI don't produce).

Do you know how to use the search function? I would suggest you do a search for Diabetes Insipidus on the forum and see if you find the information that you are looking for...and then come back with follow-up questions that you didn't find answers.

I wasn't quite sure from your post what information you would find most helpful, but doing a search is a starting point.

Hope this helps,

Emily

Thanks all for this helpful information. I've done nothing BUT sleep since arriving home from the study. Go figure!

I may ask about the home O2 test just to see. I don't seem to be a candidate in any way for apnea--young, not overweight, no one has ever heard me snoring, stop breathing, or any such thing. BUT, it seems it can be connected to ANS dysfunction.

I DO love the sleep doctor and he is ABSM certified. No one locally would meet with me in person ahead of time--they just go through your primary care doctor and NEVER see you.

So, I feel like this doctor is on the ball and will be careful not to miss things and I will make sure to ask the right questions, now that I see the things you have written.

Thanks!

Emily

I just had my sleep study Thursday night. I don't know if I slept enough to get good data or not? Hmmm.

I won't find out anything until my follow-up in over a month.

The tech said to me at 5:30 am when I woke up to pee that I did not have sleep apnea. I think I slept about 2:30 to 5:30 and that was it. I never fell back to sleep much after that. And didn't fall asleep until 2:30.

I had so much trouble sleeping there...with the wires, trying to get up and down to go to the bathroom (should have gotten a bedside potty!), and the room was soooo stuffy and HOT. I think that was the biggest problem for me.

I was expecting the sleep study to be a piece of cake compared to other tests, but I really found it to be so difficult--esp. getting through the day of without a nap, and then not sleeping much during the study. Am I the only one who hates the sleep study????

How did you know you needed another test or even suspected apnea?

I don't want to do another study!

Of course, I came home and slept like a baby (which I never do) for four hours in the middle of the day. Go figure. I thought the change of scenery at the sleep study would do me well. Guess not.

What I learned is that my rigid routine at home does have a purpose...and I'm so much less flexible than I wish I could be. I need so many things in place to keep neck pain under control, to wind down for bed, to be comfortable, etc. that not having those things left me very uncomfortable. They also messed up and didn't give me a tempur-pedic bed, so that may have contributed, as that is what I am used to and am less achey that way. Woke up soooo achey in the middle of the night.

Morgan--No one said anything to me about a clock and I had my indiglo watch! Guess I was breaking the rules. (keep reading, you're in the next paragraph too )

The staff was wonderful and couldn't have been better. The nurses were 'morgan nurses'--the kind that love to take care of and nurture you--this morning the nurse talked about how she loved the days when she was able to give baths, backrubs, adn all those things and it reminded me of morgan. The nurse gave me a shower cap hair wash, got me hot tea and orange juice and did everything to help me out this morning. I couldn't get anyone to wash my hair after surgery, so I thought this was pretty fancy treatment for a sleep lab!

I'll be interested if they got enough data on me. They said most people don't sleep very well at these things.

Emily

Sophia,

How do you look back and say "I've had this my whole life?" What are the cues we make this decision on? (This question is curiousity not a harsh tone, which it seems to have in email format!) I really have wondered how to piece this all together and how to piece together whether it was soemthing 'coming all along'.

Did you have any sort of sudden/flu-like onset or all was gradual?

I'm one of the folks getting worse. And it seems, honestly, there are a lot of us out there. But, we think I have Chronic Lyme (supported by my ANS doc). I know this is controversial on the board, but I'm going with what my doc, who is one of the best in the country, believes.

Thanks!

Emily

Rachel,

I'm sorry this medication did not work for you....you had a lot riding on it.

You are in my thoughts.

I can't believe you got the flu on top of everything else! Ugh!

Emily

Rachel,

The only thing I can think is your body is tired making all those new red blood cells?

Otherwise, I don't remember having those sort of side effects at all....but I did start at a very low dose.

I didn't have much success one way or the other with it.

Hmmm.....keep us posted.

Emily

Ditto to Corina's words! Perfectly put!

Just a note about the booster shots, since that is what immediately came to my mind in regards to relevance to folks on the board...

My PCP has been recommending the booster for whooping cough and my ANS doc has given me the A-Okay to get it. (And he's the one that does NOT support me getting the flu shot)...

So, I think it's a good idea to check in to the booster, b/c as Sophia said, there have been quite a few outbreaks of whooping cough in various areas of the country in the past couple of years especially.

There is also a measles booster (I think?) or is it mumps? I can't remember! But, the are also having outbreaks of those and recommending boosters for those.

Time to get your booster shots folks!

Here's hoping your exposure to the whooping cough does NOT cause you any problems, Maxine, and also to a speedy recovery for Mackenzie.

Emily