JaneEyre9

I'm chemically sensitive as well. I had a hard time with the "new car smell" and since i used to commute, I had to get a car that had been used for a long time. Also our new condo and bedding gave me a hard time for many months until it aired out. I guess all you can do is let the foam air out until it is comfortable for you. That's the real standard. Sometimes it's a week, other times it never gets to a level where i can tolerate it. Hopefully your foam will air out quickly! kristen

Hooray!!!! "never give up...never surrender!" galaxy quest I'm so glad you had this victory! Kristen

Hey Jacquie, Boy do i understand IBS pain. My best relief comes from drinking a daily fiber drink...Citrucel is my choice. It regulates constipation and diarrhea both so you don't keep going to either extreme. It's not a total cure, but it made life so much better for me. Also it reduces the pain if i do have flares. Mild exercise also helps a lot....as well as laying off of dairy and not eating large, heavy meals. Hope this helps. I know how awful the pain is and hope that you feel better soon. Sometimes antibiotics can increase the chance of flares. And yeah, it can be related to POTS. The digestive system is controlled by the autonomic nervous system. I had my IBS years before i was diagnosed with POTS though. Keep an eye on the back pain...like you said, that isn't typical of IBS. Hang in there, kristen

Sally-- your line about which side of the dirt cracked me up Pooh- that website is so great...thanks for linking me. I need to get one of those shirts for valentine's day! what a great way to get the message out about invisible disability...much better than fainting in public. i tried that, and though it does get the message across, the t-shirt is a much more comfortable idea. my response has recently been "i'm ok," which got a ridiculous response from someone, so i decided i might need to change things up a bit. Thanks for all the advice. This illness (as well as my MCS disability) has been a long journey of developing skills to protect myself socially....i've learned that i can say no without feeling guilty. i've learned i don't owe people and explanation for things. And more importantly, i've learned that i don't have to give personal details to anyone if i don't feel like it. I always felt before that to be honest, i had to tell everyone everything and make sure they understood and accepted me, but I thank God that I'm growing out of that!! Your advice is so much appreciated. Each phrase will be good for me to think over and use the in the right situation. Ultimately though, if you get stupid responses even from saying "i'm ok," then you probably just have to ignore that person and move on

I often feel the same way. It's very hard to know "the spirit's willing, but the flesh is weak." I had to tell that to my boss, who asked me if i wanted to continue in my academic program. I have such a strong desire to be active and doing "normal things," but my body can't do what is required right now. As far as friends go, I invite a few for quiet activities at home when i'm up to it. There are only a few sepcial people who can come over and lie next to me and watch a movie, but i hang on tight to those few. They are precious because they take me as i am. That's an important part of having POTS, realizing who your true friends are, and realizing that your worth and value aren't based in what you "do." These are hard concepts that I fight daily to come to grips with emotionally. Just want you to know you're not alone. Kristen

I always pay the price if i overdo it. The dizziness knows no bounds and can come no matter what position i'm in...even practically upside down on the couch. Best thing I know to do is rest until it passes...and then just a bit more. Kristen

Thanks for the suggestions... Nina, It's really great that you appreciate your friends and family verbally for asking about your health. That's something I need to do more often. I think I take for granted the fact that they hear negative answers to that question all the time. I've realized that constantly hearing about my health problems might not be the most uplifting thing, so i'm trying to keep things in perspective and only talk about it when i have a real problem. It's funny, i've gotten so used to being dizzy and tired, that when outsiders ask how i am, i sometimes just say, "i'm good." And then they say, oh so you're all better? Then i have to inumerate my symptoms to them. It's like i live with a constant background noise of symptoms and forget that people don't assume it already. Faith, Thanks for the suggestions...I really like the "it's not one of my better days / it's one of my better days" response. It makes it so that i'm comparing my current condition to how i normally feel and doesn't set up an absolute standard of "good" or "bad." Thanks for the input. I'd love to hear more suggestions if there are any....especially explaining fluctuations of symptoms over a period of hours or minutes....that's something i find very difficult to get across to people. Like, for instance, a month ago i nearly fainted (felt very symptomatic), then an hour later was able to sit up and play a board game (virtually symptom free). it's very hard to explain this rapid decline/recovery thing to people. Sometimes i think it just looks like i'm making up symptoms to be convenient for what i want or don't want to do.

Do you ever feel uneasy or afraid answering the question "how are you doing?" for fear people will hold you to your answer? I've found myself not knowing what to say when people ask about my health. I've been rather non-functional for about 9 months now....Too dizzy and syncopal to work, or drive, or do much of anything out of the house except cardiac rehab. I am somewhat better overall than when i started treatment. I can stand longer and sit up longer, but that's about it. My energy and stamina are about zero when i try to go out or get under stress, and every time i have a hormonal fluctuation like PMS or my period or ovulation, i get worsening symptoms which usually incapacitate me....leaving me flat in bed (my bad days). Since this is "better" than when i started treatment, does this mean my treatment is working? Or does it mean that I have been resting my body and time has passed? I get really frustrated when people say, "oh you're better," when i know that after i see them, i'll still have to go home and lie flat for the rest of the day. I'm better *compared to* not being able to move out of bed, but i'm still not functioning well. How do you answer this question without getting held to some sort of standard for all time? Even if i say to someone that i feel terrible, then i feel like i have to act like i feel terrible when i'm around them so they don't think that i'm exaggerating. Anyone else know what i mean? Extremely at a loss for words, Kristen

Well, i have to agree that getting rid of the fatigue would be so great. But really, what i'd want most would be for other people to magically understand my disabling condition and how i feel. I guess that's not technically the question, but it's my wish Kristen

That water trick is awesome. I didn't know about it, but by accident, I found it works! A few times this summer I got really symptomatic in public and didn't know what else to do but drink water!! One time i was at a restaurant ordering 2 glasses of water at a time. It did the trick. I made it through the whole meal upright Kristen

http://aolsvc.news.aol.com/sports/article....121193009990012 Thought you all could relate to this article. A basketball coach was penalized for passing out! Houston Coach Penders Passes Out on Sidelines Penders Blames Dehydration, Given Technical for Collapse BIRMINGHAM, Ala. (Jan. 21) - Houston coach Tom Penders collapsed on the sideline late in the first half of the Cougars' 82-79 loss to UAB on Saturday night. Penders, 60, was carried off the floor on a stretcher and given oxygen, but he returned to coach in the second half. He later attributed his fall to a heart condition and said he felt fine after taking the oxygen. Penders fell to his knees as UAB's Wen Mukubu drove to the basket and drew a foul with 52 seconds left in the half and UAB leading 46-44. Officials called a technical foul on Penders, apparently thinking he was reacting to the foul call. But the game stopped and the crowd hushed when Penders didn't get up. Assistant coach Melvin Haralson directed the Houston team in Penders' absence. Penders returned to the sideline at the beginning of the second half and led the Cougars the rest of the way. "I have a heart condition and I've had several episodes where I stand up too fast and get light headed. I did a three-mile fast walk this morning and probably didn't get enough fluids before the game," Penders said. The coach said he had no idea until later that he was called for a technical foul. "I don't remember anything to be upset about. To get called for a technical foul for collapsing to the floor is extremely poor judgment on the officials part," he said. Penders is in his second season at Houston and previously coached at George Washington, Texas and Rhode Island.

Jan, You and your husband will continue to be in my prayers. Kristen

I'm so glad to hear you are feeling better, Linda! Glad you aren't in the hospital anymore. Good job standing up for yourself! Kristen

I really like the idea of having all the posts in one place. Sometimes i only have time/energy to skim through the post headings and having them all in one place would be nice. But whatever you all decide to do, I'm happy to be a part of the forum. Kristen

Hi Kanoe, I can't help with the specifics of your SSDI questions but i wanted to welcome you to the forum. This is a great place to find the support and answers you are looking for! Sorry to hear what you and your husband have been going through for all these years. Health problems like these are not easy. Has your husband ever had a heart attack? Kristen

Thank you for telling us! If you talk to her please tell her that we are thinking about her! I hope she is able to get some help and to feel well enough to come home soon. Kristen

Nice Job, Melissa! You've worked so hard in the face of so many obstacles. I have the same decisions to make regarding school. It is so hard. There are no easy answers. Just trying to finish my thesis has proven difficult. My dad was going to drive me in for a couple hours today but i was too sick. Completely frustrating. Anyway, have fun with your friend this weekend! It always feels good to have some social time...makes you feel more normal (even if you can't go 'out') Kristen

Jacquie, I have the same sleeping problems you describe. I have been wrestling with my sleep for months and have 'reprogrammed' twice. It is very painful and difficult but what i did was go to bed one-two hours later each night until finally i cycled around the clock and started going to bed at 8pm rather than 8am. Now, the key is just holding it there that's what i'm trying to do now. Good luck. You're not alone with the fatigue and sleep problems....i can encourage you though that when my sleep is at night i do feel better physically when i'm awake. when i sleep during the day it's just not as refreshing. Kristen PS- my theory is that the sleep issues have to do with florinef and when i take it. no doctor will confirm this, but my sleep problems started right after my florinef dose was increased. i noticed you are on florinef too. how much do you take and what time of day do you take it?

Hey Melissa! I've missed talking to you. I have time to catch up today if you're available/able to talk. Anyway, i wanted to respond here real quick about your nutrient issue. I don't know much about the bacteria overgrowth, but i know that you can have celiac disease and not have it show up during an endoscopy. I know i've said this before, but a gluten free diet wouldn't hurt you and it could make a lot of difference in the way you feel and improve your absorption of nutrients. If it doesn't work, you haven't really lost anything. You can still eat all kinds of things on the diet like fruits, veggies, meat, and there are even some great gluten free breads and desserts on the market. If you want any recipes or product suggestions, my grandma and mom have a boatload of stuff since my grandma has celiac sprue. We eat meals with her all the time and she doesn't suffer too much from lack of food options. I actually like a lot of her stuff and have been on a gluten free diet myself when my stomach was flaring badly. Anyway, this is way longer than i meant it to be, but i just wanted to encourage you that a gluten free diet wouldn't make you lose out on nutrients or taste. Plus, it's better than antibiotics. At any rate, i hope the doc can get to the bottom of this. You've had to cope with so much and you are so strong and brave to 'keep on keeping on' through these trials with such a positive attitude. Talk to you soon!! Kristen

Linda-- What a horrible episode! It's awful that you had to go through that in a hotel by yourself. I can't even imagine how scary and awful that must have felt. It's good that you got rehydrated right away. Sounds like your body really needed those fluids. Kristen

Persephone, I tried Nordette back in October and it really did a number on me. Some people just can't tolerate the pill and I am one of them. The longer i was on it, the worse my symptoms got. I was very sick by day 6 and had to stop. I'd keep an eye on things and give your doctor a call if symptoms get worse. Good luck, Kristen

Hey Dennis, Be careful about stopping the florinef. The body needs to be weaned off slowly. It's best to have your doctor help you. You could get bigger problems if you just stop it suddenly. I know it's very frustrating to live this way. We all have slightly different symptoms but similar feelings, so I empathize. Don't give up! Kristen

I find ginger and peppermint are the best non-medicine options for tummy trouble. I usually have ginger-ale or mint tea, but any form of these two things would probably be soothing. Sorry, I know how it feels Take care, Kristen

Hi CyberPixie, It could be a lot of things, but I know that along with POTS, I have IBS and that can cause severe diarrhea when i'm under stress. The autonomic nervous system regulates digestion, so it is all interrelated. I hope you can work with your doc to find the cause! It is most unpleasant to have severe cramps and diarrhea...not to mention it makes you dehydrated! Kristen

Hi BriBri, I can relate to your experience. POTS symptoms alone can make you feel terrible, but when you have professionals (and/or friends, family, etc.) questioning whether you are really sick or not...that adds a whole other dimension to the illness. I'm glad you were finally diagnosed so that you can get the help that you need. Also I'm glad you found this board. Welcome! Kristen