MightyMouse

Dana, at least once a year I do a really bad, bad girl cheat... and I also love Papa John's which has been one of my infamous cheats--extra cheese, hot peppers, pepperoni and pineapple. I know it sounds gross, but the salty and sweet of the pepperoni and pineapple are amazing together. I eat as much as I can stuff into me in one sitting... and relish the toasty crust...

and then hours later, I'm a miserable, whiney wench... and I'm sick and sore for days

Actually, I've not found the g/f bread to be all that expensive. It's frozen and keeps a super long time. Also, I don't keep cookies in the house b/c, well, I'll eat them! Some other safe g/f inexpensive items are rice crackers. Kame makes a few really tasty choices. I like the sesame ones, plain, etc.

Also, you may have been told you can't have dairy, but usually if you go g/f for a while, dairy intolerance disappears. That's the case for me. As long as I don't overdo it, I can have dairy... I just don't eat it that much so it can be tough on my guts if I really go for a lot of cheese.

Speaking of cheese, if you liked blue cheese or roquefort, you're going to be out of luck. They use bread as a starter for the mold that's in those cheeses. Sad for me as I LOVE the stuff on a burger.

You can try to bake your own pizza dough--that is certainly the least expensive option, but it's a trial and error thing and I've not been able to master it. Also, some sites say yeast is out, but you may be able to find some that's g/f if you search on the celiac site I linked to above. I've tried making my own bread too, but nearly all my efforts were a waste.

As for replacing cookware, I have not needed to do that, but then again, I wash almost everything, including pots, pans, strainers, bakeware, in the dishwasher, which does a tremendous job of cleaning off everything.

Nina

When I'm carb craving, I like to eat Fritos...which are g/f... so are nearly all brands of tortilla chips, except for the whole grain stuff b/c they use whole wheat in a few of them. Just read the ingredients. Also, absolutely you MUST look at the safe foods list here

http://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

and the unsafe foods list

http://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

You absolutely also must consider even what you drink. For example, all beer and malt beverages are OUT. Most distilled spirits are okay--so vodka, tequila, etc. are generally okay--although there is argument about vodka based on grain. The issue is gluten protein, which by the time it becomes alcohol and is distilled multiple times, in my opinion, the protein is so negligible that I don't consider vodka unsafe. I've never gotten the distended belly or nausea from vodka. I cannot say the same thing, though, about scotch, bourbon, etc... they make me sick.

Some surprise things you have to be careful about:

soy sauce, teriyaki sauce, dextrin sweetener

I also have trouble with sake, which I found out they use some barley based ingredients with the rice to promote the fermentation process. I love the delicate flavor of good sake, but unfortunately, within an hour, I feel terrible.

PS, do a search of the forums for old posts on this topic--there are many, and in those lots of people included links, including me

Don't fret, there's plenty of bread and pasta out there that taste good and are g/f. You can buy stuff in bulk online, or if you have speciality markets nearby, I can give you suggestions for items that taste like the real deal. Places that I use are Wegman's, Trader Joe's, and then order online from Mr. Ritts.

Pasta brand to look for:

Tinkyada

Bread to look for:

any of the Glutino breads, Bagels, rolls.

personally, I like the flax, as well as the fiber bread. They also have white, corn, etc. All of them taste their best when toasted.

Cereal:

Barbara's Puffins cereals are really tasty

Pizza...well this is a tough one, but Mr. Ritts sells pizza blanks that are pretty good. A second option I get at Wegman's is by Scharr, and the pizzas are just big enough for 4 slices, so maybe 2 meals or one meal and a snack for later

You can do this. There are tons of foods you probably didn't realize are safe to eat (and tons that have hidden gluten--if anything says modified food starch, texturized vegetable protein, etc. it's all gluten--ex: veggie burgers, twizzlers).

Most corn chips are completely safe; commercial cereals that are safe: corn pops, honey combs, and captain crunch. Not all that healthy but if you want to feel like you're cheating without really cheating, they are nice for snacks or dessert.

I have NMH and POTS, but I don't have brady... when my pressure tanks, and I get syncope or near syncope, it's because my heart rate is more in the normal range like the 80's as opposed to my typical morning 120s before my meds kick in.

Nina

Do you also have syncope? Any related diagnoses? Many with POTS have additional diagnoses that are related, such as GI problems, migraines, joint problems, etc. Having those things documented will help, along with documentation of your functional limitations. There's an article you can search for here on the site about quality of life being similar to those with heart failure for those with POTS.

Nina

Many people here have been denied on the first time through... some have been denied more than once.

Nina

Welcome Tara Lynn,

gi pain has been one of my most pervasive problems day to day. Sublingual levsin helps me a bit, but it also makes me tired. On a good note, a side effect is increased blood pressure.

As for removal of ovaries, that's a tough choice to balance b/c many of the autonomic specialists tend to comment that patients with POTS can worsen post menopause. My doctors have told me to expect that I will get worse at that point--but we're each different. My issues are from a genetic disorder, so I suppose it may depend on HOW, exactly, you ended up with POTS.

Nina

Hello again friends, I'm doing my best to hang in there. I know I'll get through this--sadly, I've been through far worse in my life, and I lived through those events, so I know with time, I'll at least be emotionally better. Physically, it's still pretty hard. I was really bummed out that my whole BRAVO test was such a bust. There was just so much data dropout it was hard to draw any conclusions. Now my GP wants me to get a head MRI b/c the headaches have been relentless--but she forgot I can't have an MRI for 30 days from the BRAVO implant date, so I still have about 20 days before I can get it done.

I also need to find a decent neurologist--I haven't had one for about 2 years now. I tried a new guy last Summer, but he was HORRIBLE. I will NOT go back there--although I wll get my paperwork on the EMG's his coworker did (who I liked, but the guy only does EMG's). I have a fall back choice (my former neuro), but he's really not that on top of things and I don't trust his judgement--but I'll use him for refills on my maintenance meds like Neurontin (Gabapentin), and if I know what tests need to be done.

On the home front, it's stressful. I used to look forward to coming home from work, but it's not a place of rest or peace for me right now. I only look forward to my time with the cats... and at least I can lock us all in the bedroom together and pretend I'm home alone with them.

Nina

I can get a full text version of this article. Anyone desiring a copy will need either to email or PM me.

Nina

Boo hiss for the receiver... there was so much data dropout to the receiver that the test was essentially inconclusive. Of the 48 hour test, we got a broken set of 24 or less hours.

On a good note, what it did collect wasn't horrible. Oh, and if I have to hear again from a doctor "this has never happened to one of my patients before" I think I'll scream. Seems to be a common phrase for me to hear.

Nina

I get random hives, but not so much now that I'm on the combo of benedryl, zyrtec, and singulair. But, I do still get them, in fact TODAY, so your post was timely! Got them on my forearms which tend to be one my starting places.

Nina

Hi all, I'm holding on as best I can. I'm too tired tonight to eat and really not feeling much like eating b/c my sensor is still in my esophagus and I'm hoping it will fall off soon because it HURTS me. It hurts more when I eat or drink... I see the doctor tomorrow for results.

I do keep telling myself it will be better eventually. If my body calms down more, I'd be able to better handle all the emotional stuff. I did talk to my doctor about being in too much pain to sleep well, and that the lack of sleep is just adding to my mess--she agreed and wrote an Rx for some sleep meds. Thank goodness! I've had 2 nights of pretty okay sleep. Not perfect, but better than last week.

Love to you all.

Nina

NonEDS, but likely related collagen defect. Not just neck, but all joints and all areas of spine too.

This is something you should report to your doctor, and perhaps specifically to a neurologist. I used to get electric shocklike sensations before i had my spine surgery to deal with a ruptured disc.

Nina

KeXia I have the MBT shoes, similar to shapeups, and I love them. If you go that route, be careful to only wear them for short periods at first or you're going to be sore.

Nina

I find the easiest way to make fish is to use foil or a cooking bag, or even cooking parchment. Put the fish in there with whatever veggies you want, and herbs/salt/pepper, etc. close the thing up, throw it in the oven, or on grill, or if you're really lazy like me (and using only the foil method) put it right on the burner if you like to live dangerously. You can also put it in a pan and cover it, but I don't like the clean up, so foil is my method of choice.

Parsnips, turnips, all that stuff, I either nuke till soft, or steam. You can puree so they taste like taters. You can also use cauliflower.

As for how to cook without crashing, let me know if you figure that one out. I eat a heck of a lot of cereal for meals for that very reason. (cereal that's gluten free, of course--and I throw in uncooked quionoa for some protein, along with nuts like pecan, walnut, pistachio).

I find the best source for inexpensive vegetarian ingredients is an Aisan, Indian or Pakistani grocery. The Indian place by me carries a huge assortment of various rices, beans, and veggies, along with spices that will never let me get bored.

Nina

I just re-read all the posts to me. I have tears in my eyes, happy ones b/c it helps to fill me up with some good stuff to take through my day at work. Yeah, I'm still working through all of this. Trying to keep my routine so I don't lose what's left of my mind.

As for what the BRAVO is, here's a link.

Given Imaging & BRAVO pH monitor

I have no interest in this company except for the expensive piece clipped into my esophagus, which will make one very pricey waste pile in a few days. Also, in a "only in my world" moment, the batteries died in the receiver/monitor sometime between bed last night and waking this am, and the irony is it was a terrible heart burn and reflux night. My doctor's office is now freaking out.

Add this to my most recent mishap, my ear tube fell through my ear drum and is now in my middle ear. In two weeks, there will be a fishing expedition in my ear to get it out and put a tube in a new location. You know it's bad when the ENT is looking into your head and says "Now THAT is really interesting." Then I got read the riot act about using cotton swabs in my ear... to which I replied "make the itching stop and I'll stop using them." And with that, I'm back on Singulair. Halelujah to that.

Nina

Oh wow. You all are so sweet and I appreciate your generous hearts. I'm hanging in there. My therapist asked me today what makes me know I'll be okay, what makes me resilient. I told her it's because I've been through harder things, worse things and I survived those times, so I know I'll survive this too. I'm holding on; yesterday was just such a tough, tough day physically that I think it just shifted me briefly to a bad place. I can't say I'm feeling awesome today, but I am better than yesterday and that's all I can hope for right now.

Just a quick hello for now, I need to get to bed. Love and hugs, Nina

Oh hon, how I've been there. In my case, it was actually MY BOSS who was saying all those horrible things behind my back...and worse, said I was making it all up. That's right, I made up having a broken neck. Nice. Thank heavens for the friends I had there who stood up for me. I did hurt though, and I swear if I ever see that woman again, I'll tell her what for.

I have been seeing a therapist, and it helps a bit. The long distance good thoughts can't hurt either, so thanks for those.

Living in the same house through all this is kind of nuts, but not an option for me to leave. I can't afford to financially.

I'm also going back to my gp tomorrow to talk to her about the persistent headache and inability to sleep (which started before Teri told me her news in April). Even with the emotional stuff, I know a good night's sleep would be an awesome healer. When I'm rested I can physically tolerate more, which means I can emotionally cope better too.

Wow, if that were only really possible. The best I can do at least for me is to have learned how to slow down my breathing, and having practiced yoga, it helps me to try to get a bit meditative and calm myself. Doesn't always work, nor is it even always possible, but it helps sometimes.

For me, any large emotion, happy or otherwise, provokes symptoms.

Nina

I vote that you pick which ever one you think you'll actually do regularly!!!!! Me, I have the bike, and I should use it more than I do, but I wouldn't use the rower b/c of it bothers the area of my back that I've had fused. Either way, you'll likely get a great workout and give yourself the opportunity to feel the best you can feel (or for me, what I refer to as my "normal"--which clearly is far from actually being normal )

Nina

Hi Everyone.

Since my car accident on 3/3, I haven't had a single day of good sleep, a day without a headache, or a day without belly pain. Makes POTSy stuff all that much harder because I'm persistently exhausted.

Had my BRAVO implant done today... I'm tired, and a bit sore. The doctor wants me to do all the things that normally provoke the belly issues, so I did yoga tonight, and had a regular sized meal instead of a really small one. I'm hoping that this test will figure out what the heck is really going on with me because I'm just teetering. Okay, so my one GI doc has already said the accident sent me off the cliff healthwise, but I'm hoping not or at least there's a safety line somewhere to tug me back up to the top.

I have to say, that the emotional and physical are colliding too. Teri has ended our nearly 18 years together and it's been so shocking, confusing, sad and hard. I still can't say I fully understand her logic in all of this, but I have accepted that it is what it is; I've had about 4 weeks to start adjusting. As many of you know, high states of emotion can make autonomic stuff just plain whacky.

I am so thankful that I have some really good friends and a few family members helping me out too. My sister came down from CT to take me to the hospital this morning. I have to admit to having fears about how I'll be able to manage on my own especially given all the above stuff, but even if I can't manage on my own, I know that somehow it will eventually be better than I've been in these past few weeks of this chaos. To those of you who've been in email, phone and f/b contact with me, I want to publicly say that you've kept me afloat and I appreciate you more than I have words.

So, that's it for now. Now, where's the bounce in this bungee cord that pops me back up???

Nina