opus88

How great that you have planned to do this! I hope you have a terrific time - relaxing and fun. Looking forward to hearing about it!

I must take a beta blocker (propranolol 10 mg) before I perform in order to continue that part of my life, but if I have to take 2 in one day, I can become a zombie. Thankfully that is the only prescription I have to take. I hope all of this turns around very soon and that you and Nicole will finally see some progress. Sending many positive wishes and prayers . . .

I've never been tested for celiac, but I went gluten-free probably about 18 months or so ago. My goodness - the bloating and discomfort disappeared! A few months ago, after absolutely no gluten for a number of months, I allowed myself 3 pieces of pizza one evening and was fine. However, over the past 2 months or so I've really let down on this and allowed myself a tiny bit of wheat fairly regularly, and I'm back to feeling bloated and uncomfortable. So I think that after having "cleared" my system it could handle that one-time splurge, but the constant (even tiny) cheating recently is what created my current backward slide.

I second Gena's comments. Before I read her info, I was already thinking that maybe colonics would be helpful to you. Check with health food stores in to see if there is someone in your area who does this procedure. Do it at least 3 times fairly close together (skip a day or 2 or 3 between each session). You might find that getting cleaned out thoroughly would help things move more quickly after that.

Ditto on the incredible stress you are under right now. It would drive even the healthiest person to do, say and think things that are very out of character! I wish you and your family the very best . . . As for the lupus test, please don't fear it. It seems pretty common that those with any form of dysautonomia are tested for lupus, and it is quite rare that the test returns a positive result. It's just another thing in the process of elimination, so maybe you can look forward to knocking that off of your list of possible diseases. Hang in there, and feel free to vent any time. We're here to listen.

The lack of care and caring on the part of the doctors is unforgiveable!!! I truly hope your husband recovers very quickly so you can both put this behind you.

At the moment, I don't remember exactly how I caught on to the magnesium benefit. But after only 4 days on it, my fatigue was obviously lessened, and after a couple of weeks I began to realize my terrible feeling of mental overwhelm was lifting. After 2 or 3 months or so, I felt I was back to being able to mentally deal with whatever came my way. What an incredible relief that was, especially since I had always been an enthusiastic, can-do person. I used the Standard Process brand (nothing else I tried worked for me) - you can call 800-425-3115 to order it with no shipping charges. It might be worth trying one bottle to see how you do. I believe I took 1 capsule 2 times a day at first, worked my way up to 2 capsules 3 times a day for about 2 weeks, then weaned back down. (You'll know if you are getting too much because you will experience loose stool or diarrhea - if so, just cut back.) For the first time in probably 4 or 5 years, I have been off of it for a little more than 3 months, and I don't seem to be noticing any backward slide.

I found the Dream Time mittens plus much more on http://heatreliefdepot.com/catalog/default.php. It has many useful items for both warming up and cooling down, so whichever trouble you are having, you might find something on that site to help you!

When I became unable to mentally deal with even little things, it was because I was in great need of magnesium. Once I started taking magnesium lactate (the only form that worked for me), things became mentally easier and I now have a more normal reaction to things again. The magnesium also helped my fatigue.

hehehe . . . Actually, I'm in Alabama but very near the FL line. We joke about the idea that if we'd known it got cold here in the winter (even though short-lived), we would have gone farther south. Somebody told me last night that I was cold because I didn't have any insulation (I'm very thin). I told them I moved south so I wouldn't need any, but that my theory wasn't holding true! Thanks for the info on your mittens - I'll do a search and see what comes up.

Emily, Parrots can be very entertaining and quite cuddly, or very distant - it just depends on the bird. Various breeds will share basic personality traits, but like people or dogs or cats, each individual creature very definitely has its own way of dealing with the world. I was raised with parakeets. Some were very humanlike and personable in their interactions, some were awesome talkers, others just sat there or only chirped. A few years back, my husband and I were given a cockatiel - we taught him to whistle about 20 songs and say a few words, and he loved to take a nap with or near me. My Senegal can be a problem with her screaming (we're working on reducing that) and did bite for a while, but she's so cute and funny and otherwise lovable that it makes it all worthwhile (kinda like children, I imagine). The bigger the bird, the bigger the mess and the louder the noise - usually. Also, the longer the lifespan. Some of the very large birds can live more than 100 years! Most of our parakeets lived between 2 and 4 years, although we had one for 9 years. The larger birds (parrots, cockatoos) generally have the learning ability of a 3-yr-old and the temperament of a 2-yr-old! Once you get past the purchase price plus the cage, perches, etc., they are quite inexpensive to maintain and rarely require any trips to the vet. But you definitely want to keep a DustBuster handy! I would suggest visiting a bird shop often to spend time with the knowledgeable owners or employees, as well as playing with the birds. You'll find at least one breed that really draws you in. If you do decide to get one, do let us know!

Good post! I follow a diet of no wheat/gluten, no dairy (except butter and eggs) and no sugar/sweetener, plus I eat very little processed food. It really does cut down on meal options, especially when you take out the "cream of whatever" canned soups that used to be a staple of my dinners! Meat loaf and homemade chicken-veggie soup are staples for us, but here are a couple of quick and super easy things we enjoy, and they can easily be doubled and frozen/reheated: Fake Shepherd's Pie 1 15-oz. can mackerel or salmon, plus about 2 Tbsp. of the juice retained 2-3 cups fresh mixed veggies, chopped to bite-size (if I'm too tired to do all the chopping, I will use about 10 oz. frozen or canned mixed veggies) seasonings of your choice (sometimes I use dill; more often I use chives, cilantro, sweet basil, marjoram) prepared mashed potatoes (about 4-6 servings) Mix together fish, fish juice, veggies and seasonings. Place in bottom of casserole dish. Spread prepared mashed potatoes over top. Bake in 375 oven for about 35 minutes until top becomes slightly browned and bubbly around the edges. (Adjust time for frozen vs. fresh vs. canned veggies and for size/shape of baking dish.) Serves 4. (I like to then top my serving with butter and sea salt.) One-Dish Dinner 1 pkg. turkey kielbasa, sliced in about 1/2-inch pieces (can also make this with ground meats, thinly sliced steak, chicken or turkey chunks, catfish, tofu, etc.) fresh or frozen mixed veggies medium onion seasonings to taste optional: lentil pasta (cooked) or brown rice Brown the meat and onions together, using a little virgin coconut oil. Add spices. Add freshly prepared pasta or rice, if included. Heat until flavors are blended. (I add a little coconut milk if pasta or rice is used.) Serves 2-4.

Great topic! My little Senegal parrot is soooo fun. She thinks I'm her mate and wants to be with me all the time, and begs to be scratched and cuddled. My husband wasn't thrilled when I said I wanted one nearly 6 years ago, but he has come to absolutely adore her, and misses her even more than I do if we're away from her. Kelly is quite a clown with her many tricks and the few things she says - we laugh at her all the time, and of course, laughter is the best medicine . . .

I became ADD because of my illness. I can go for days or weeks when I just know my IQ has dropped at least 30 points! And this topic is the first time I've seen mention of people who are usually articulate having trouble with stuttering and an inability to think of words. That is driving me CRAZY! I thought I was alone on that one so I'm very glad it was mentioned. On another item mentioned here: I am very disgusted with the medical world and know without any doubt that I am doing as well as I am because I have stayed away from their tunnel vision and their "throw a drug at it" mentality. I encourage you to take a good look at the number & dosages of medications you are taking and consider how they are likely causing you more harm than good (in many ways). Knowledge is power, and no doctor will ever care as much about you than you do. (And yes, we always watch CSI & CSI Miami!)

Beverly, Many thanks for the info and insights! Back when I was doing heavier research (and my memory & ability to learn was better than it is now), I remember finding something about a specific allergy test called something like IgG4 (?). It was supposed to be a better, quicker and more exact allergy testing via a blood draw instead of doing the numerous skin tests. I had really wanted to pursue it at the time, but ended up going in a different direction. I wonder if this IgE level is measured in that IgG test, which could then possibly indicate why the level is high. I didn't realize trouble with both smoke and mold could be closely related. This NAET therapy is starting to sound more appealing, and there is a practitioner about 45 minutes from me. I don't know her fees, but I need to at least contact her for more info. I spoke with someone last week who went to this person for only a few treatments, and she said the results were incredible for her fatigue and brain fog. I did find my Vitamin C crystals and started taking them yesterday. I have 4 unexplained bruises which could be nothing, but bruising can be a sign of a need for Vitamin C, as can fatigue (Vit. C feeds the adrenals). So I'm hoping . . . Glad Nicole had a little improvement. I know how frustrating it can be when just walking to the couch will create a multi-day setback. I hope she didn't wear herself out! Maybe this will be the beginning of an upswing now. Let's hope! Good luck on the cell salts. Sounds like your nephew could become a very important contact for you and Nicole! Keep me posted . . .

Hi, Jessica! So sorry you had such a rough time, and I hope you are feeling better by the time you read this. And don't let the guilt take over - you did what had to be done based on the best information available at the time. I've never been pregnant so I can't offer any suggestions based on that experience. However, I have found that the homeopathic remedy Nux Vomica works like absolute magic for my nausea. There may be other homeopathic remedies that would be helpful to you as well. I'll bet a local health food store could tell you if there is a homeopathic practitioner in your area. Since there are no side effects to homeopathy (although I know nothing about safety during pregnancy), I would think this might be something to check into. Very best wishes to you!

Beverly, I typically do have swollen glands. Even as a child, every doctor visit prompted the comment about my swollen glands - you'd think that after a while this would have prompted some attention! As I got older and realized I was severly allergic to smoke, I blamed it on growing up with a smoker. But I have learned that swollen glands and a sore throat are also very typical of dysautonomia and chronic fatigue. Gee, how fun! Normally I don't think about it too much, but this time is more severe than usual. Not only can I touch my neck and easily find obvious swelling, but I am aware of a thickening of the inside of my throat without even trying to notice it. It seems to be worsening again this afternoon. If we go to our house this weekend, I'll search for my Vitamin C crystals. Maybe that will help a bit. Were you able to get the Metabolic Typing book? How is Nicole doing?

I'm sorry this is taking such a toll on both of you and your relationship. I think we've all been through our ups and downs with our families and partners. Chronic illness does not only affect the person with the illness! My heart goes out to you. I don't know that I have any real words of wisdom or comfort for you. But I will share a few things that have helped us. Research. I'd never been big on research, but once the internet became a part of my everyday life, it has been incredible. I started by looking up and reading about each individual symptom, following even obscure or unpopular ideas of what it could be related to. Finally one day, boom - I stumbled upon something that led me to the first real possibility for an explanation of my illness. From that point on, my research & learning has been much more streamlined. It also led me to try non-medical treatments, many of which have been of great value, and the most important of all being the Metabolic Typing Program. This gave me such a feeling of control over what was happening to me, instead of feeling like a victim. Encouragement. My husband and I are both driven, Type A, can-do leaders. That all came to a screeching halt for me. He felt betrayed by me/my illness, I felt betrayed by life. But we have both slowly come to grips with things. My hubby is always pushing me to do what I used to do, even if it's not done as well. He will even push me to go for a walk that I don't feel up to, and most of the time I'm glad he made me go. At times I did resent him, feeling he didn't understand. But the reality was that it made me not give up, and helped me realize that I can do more than I think I can. Down time. Instead of going out to eat or to have a drink, we have come to enjoy renting movies, or even taping them and watching them together at another time. If we feel up to being with others, it's easier to go elsewhere than have them at our house where we have to first clean the house and then play host, and hope they don't stay too long for my energy to hold out. (I wish I could make him enjoy board and card games or jigsaw puzzles, but I had to give up on that idea. However, asking a friend to come over for those things is also good.) Alone time. It's important for your spouse to be able to have a guy's night out, or get together with friends to watch football or some such. He needs that opportunity to forget about the struggles for a while. And I really enjoy having the house to myself for a while, especially knowing that he is doing something fun for himself. Hobbies. Find something new to pursue (alone or together), such as art, crafts, writing, music, scrapbooking, etc. There are many classes on the web if you aren't strong enough to go to a classroom but want instruction on something. That transition period from active to sedentary can be really tough, but you can make it work for you. I am physically weak, having gone through terrible deconditioning after having once been strong and in great shape. Often, this angers or frustrates me. But my husband says that since he can't cure me, doing those things for me makes him feel he is at least doing something instead of "watching me be sick." Whatever you do, if you love each other, work at making it work.

I had a lot of trouble with that for a while. It was cleared up after being on cell salts for a few months. Something about the specific gravity of the urine being too light for the body to grab onto to utilize the liquid, so it just kept going straight through the body. (I doubt I explained that very well.) Anyway, somehow that triggered the urgency. Another thing to consider is the possibility of a very low-grade bladder infection. Slightly off the topic: I just learned, thanks to my dad's experience, that a severe but unchecked bladder infection can cause pain in other parts of the body. He kept talking about chest and arm pain, and had dribbles instead of a urine stream, but no burning or other obvious symptoms of a bladder infection. Once they found it and put him on strong antibiotics, the other pains went away as well.

Thanks, gang. What a stupid problem to be having! And yes, unfortunately, it does smell. Leave it to me to have something weird going on. At least the throat, etc., stuff seems to be better, although it's far from gone. Blackwolf, I hadn't thought about the yeast infection angle, but now that you mention it, it does make sense. I used a generic triple antibiotic salve and it seems to be better, but I think I might have some athlete's foot stuff - maybe that would have that other ingredient in it. (Does that mean I have athlete's navel? Where has it been that I haven't - I'm sure not very athletic anymore! ) Thanks for the suggestion!

Thanks, Emily! I didn't find the item on that site, but it's a very cool site - I'll have to go back and window shop when I have time! I did find something at http://www.dwquailgolf.com/access/hothands...ds_mittens.html. Has anybody used these? I'm wondering if those little heat packs give enough warmth.

How about heated mittens? Anybody know where to get a decent, inexpensive pair? (Sure wish I could afford those slippers - they sound terrific!)

I think it's a great idea. Yes, send the pictures and prices and how to order!

This is a tough one. I generally speak in a very matter-of-fact manner, telling them something like, "My body doesn't understand how to act. Automatic functions such as breathing, body temp, heart rate, blood pressure and more can just suddenly go crazy, accompanied by any combination of about 30 other symptoms. Sometimes I go for weeks or months feeling like I could collapse or pass out at any moment. I never know from one moment to the next how I will feel. But I'm doing everything I can to live a normal life." If they ask questions, I will answer them all day long! I do watch for signals that they have heard enough, and I try to end with some kind of positive statement like above, or "it's just what I live with, but today hasn't been too bad" (or, on a bad day, I might tell them that today's not such a good day but I'll be ok). Somehow, I think putting the positive face on it comforts them and releases them from thinking they should feel sorry for me. I'll accept help if I need it, but I want people to understand what I go through, not pity me!

Lisa, If you just got that news and you are only a "tad bit" freaked out, you're pretty strong! If it were me, I'd be all over the internet trying to learn about it before my neuro appt., and then doing more research after the appt. I've never experienced anything like what you are going through, so I can't be of any help except to let you know that I'll be sending you lots of positive energy. Please let us know what the neuro says.