Jan

Personally I think the shot is scarier than the flu. Tons of people here in MN are sick with colds, virus', who knows if it is the flu. So far, everyone has mild cases of what ever. The medical people say everything is probably H1N1 but who knows. My advice, don't worry. Mainly because you will get it or you won't. And if you get it, you may be fine. Worrying won't change anything except make you miserable even if you don't get it. And when you figure out how to stop worrying, let me know. lol

I think I like the spelling duface better. If you faint, maybe it could be dirtface, or floorface. If it works out, you can be smileface or smugface. Any way, I just wanted to say good luck, I think it could work very well for you. And if not, don't be a sadface. You can be an atleastItriedface.

I think it is a miracle you were able to find a job you can do part time in such a small community. I know many people who are able bodied who can't find a job right now, especially one with benefits. I personally could never do a job where I have to sit. Sitting brings on my POTS symptoms, just like standing. It is a blood pooling thing. Gives me migraines and makes me dizzier. Sitting might be the reason why you can't concentrate on computer work any more. I think you should try again for SSDI. One problem with that is you don't qualify for medicare for two years after you get it. The main problem I see with this for you, is you don't have a doctor and a diagnosis. But many attorney's will offer a free consultation and will work for the back payment you will get if they win. You could send your file to a bunch of them, even try some of those who advertise on TV. Maybe one will help you. It is kind of a catch 22 when you work part time. SSDI may think that means you are able to work. If you get a hospital to accept you for testing, you may be able to get those bills paid for by medicaid. If your medical bills are higher than your income, or some percentage, you may qualify for that month. So try to get all your medical testing done in one month. You could call your county MA department and ask them how it works. Also, ask them if they have any suggestions for health care. You could also send a letter to your congress person. You are the poster child for why we need health care reform in this country.

Don't wait for the doctor to call. Call the doctor's office. Your report is probably under a pile of papers on his desk. If you call, hopefully they will dig it out.

Slow moving gut?...that is just a distant dream this week.....lol

I had diarrhea from some unknown cause and when I took Pepto Bismo, I got terrible stomach cramps. I called my doctor's office and the nurse said it is a bad idea to take any of those meds like Pepto and Immodium, that are supposed to stop diarrhea because your body is trying to eliminate the virus/bacteria and those things stop the natural process, thus the awful cramps. Her advice....stop taking the meds. Something I sure didn't know and makes me wonder what those meds are for? The Immodium might have slowed the process so your symptoms lasted longer. Hope you are feeling better by the time you read this. Stuff yourself with saltines and rice. And don't eat corn, honestly, I did that....BAD idea. You will SEE why if you do it.

I was pregnant before I got POTS but yes, my headaches/migraines were much worse during pregnancy. Part of it was only being able to take Tylenol, which didn't even dent them. I had a prescription for Fioricet at one time in my life and it helped a ton. I wasn't pregnant and didn't have POTS when I took it. I haven't taken it since I got POTS, because I was afraid. Since getting POTS, I am afraid of a lot of meds. I am sure it is obvious, but if you do try the med, don't take Tylenol too. Can you take Tylenol 3's when you are pregnant? I have tried those with some success for headaches, the codeine makes me sleepy, and a bit dizzier, but all I want to do with a migraine is lay down anyway. Just for the record, I am now in menopause and rarely get a migraine now. It has also leveled out the POTS symptoms. In my experience, a hot flash is NOTHING compared to a migraine. Something all you ladies with menstrual migraines and cyclical POTS flairs can look forward to. I hope your headaches go away as the pregnancy progresses. How far along in your pregnancy are you?

Diet Pepsi is my caffeine of choice. Caffeine is a vaso constrictor so it raises BP. I drink the Diet Pepsi on ice through out the day. I find it really helps, especially if I have to sit for awhile, like if I go to a movie. If I sit for a long time without it, I get a terrible headache. I quit all caffeine for a year when I first got sick. They Mayo clinic suggested trying it. For some it helps, for some it hurts. I have the kind of POTS where the BP drops and then the heart races to bring it up. Keeping my BP from dropping lessens the tachycardia. I would guess if you have the other kind, where the heart races, and the BP drops to bring it down, the caffeine might not help.

I have heard of people passing out when in a lot of pain. I would imagine it is due to low blood pressure? I would almost hope to pass out if I was in as much pain as you describe. lol

I use to have a great deal of difficulty walking anywhere. I barely left the house. Stores were a nightmare for me. When I went to the Mayo, they told me I had to retrain my body to be upright. That instead of avoiding walking, I needed to do it more. That was a huge wake up call for me. I realized I was avoiding walking. The idea of retraining my body was actually a positive thing for me. It felt like I could actually DO SOMETHING to help myself. My body was no longer the enemy, but my partner in getting well. It took years of baby steps, but don't give up and think you will for ever be home bound. If there is anyway possible, go swimming, or get an exercise bike or do leg lifts etc. Don't give up and think that you will not get any better. Many of who were in your shoes are now able to have a sort of normal life.

According to the NDRF site..... The normal response for a change in body position, results in a stabilization to the upright position in approximately sixty seconds. During this process, the normal change in heart rate would include an increase in heart rate of 10 to 15 beats per minute, and an increase in diastolic pressure of 10 mm Hg, with only a slight change in systolic pressure. For those who are afflicted with Orthostatic Intolerance, there is an excessive increase in heart rate upon standing, resulting in the cardiovascular system working harder to maintain blood pressure and blood flow to the brain. I think in order for a diagnosis of POTS, you have to have the change in HR. The T in POTS does stand for tachycardia after all.

Right on time, about 8 lbs. and healthy.

The odds of being hit by lightning are increased if you go outside during a thunderstorm and decrease if you stay in the house. You can't just go outside during a lightning storm and stand under a tree and think the odds will save you. You are talking a very different set of odds. We are not the typical population. We are people with odd medical histories, that react to meds different than others, who may have neurological issues that no doctor has identified. I think for those of us with dyautonomia, getting an untested vaccine that has a history of causing neurological problems is like standing under a tree in a storm. Maybe the odds are in our favor, but they may be a lot higher than for the general population. The odds of dying from a vaccine you don't get are ZERO. I agree with all those who suggest discussing this with a trusted doctor who knows your history.

I vote go for the kitty. You need something that forces you to get out of bed. And if you are sleeping that much, you should make sure you stay hydrated. Drink a TON when you get up to use the bathroom.

When people "know" they want kids, no one ever tries to talk them out of it. When people "know" they don't want kids, people seem to always want to try to talk them out of it. I can completely understand wanting to get it done while you have medical coverage. My sister had her tubes tied when she was pretty young and got a lot of grief for it. She has never regretted it. People kept telling her she might change her mind. I guess you are the only person who knows for sure, but if you really don't want kids, I would have the surgery while you have the medical coverage. The younger you are, the quicker you heal. It is best not to make major life decisions when you are upset, so depending on how you are feeling about your divorce, it may make some sense to wait a few months or more to decide. You really don't need to decide anything until you find a "partner" and in this day and age everyone should be using condoms while dating anyway.

Crying makes me really sick too. And if I start, all the bottled up tears won't stop. I hate that. I hear you about people thinking I am making stuff up. If you had a broken leg, and hobbled around, people would think you were so great for dealing with that and not letting it stop you. Yet, all of us are dealing with something much worse, and we get NO credit for pushing ourselves, instead we have to WHINE or people won't even believe us and if we don't explain, no one will offer help. The other day a friend of mine said something about me needing to "get a life". She was kind of joking around but I just wanted to snap at her and say, I sure wish I felt well enough to have one, but I just smiled and agreed because I hate to complain and she is clueless of how difficult life is for me. I am glad you are asking other parents for help. Maybe one of them will "get it" and really offer to help.

I had no idea either. I went off the pill in February and am now in menopause. So no more bleeding at all for me and still taking .2mg of Florinef. After reading this post, I read up on Florinef. It says that when on estrogen therapy, the Florinef may need to be decreased and then increased when going off the estrogen. I didn't know, and didn't do that. And to be honest, feel much better not having cycles anymore. I really hate reading all the side effects of Florinef because I don't think I would be out of bed without it. My doctors and pharmacist always insist that it is really quite safe and that those warnings you get with the med are for the more heavy duty steroids in the same class. I want to stick my head in the sand and believe them.

The shot was given in 1976. People got Guillain-Barr? syndrome from it. This is from Wikipedia. Overall, there were 1098 cases of Guillain-Barr? Syndrome (GBS) recorded nationwide by CDC surveillance, 532 of which were linked to the NIIP vaccination, resulting in death from severe pulmonary complications for 25 people, which, according to Dr. P. Haber, were probably caused by an immunopathological reaction to the 1976 vaccine. Other influenza vaccines have not been linked to GBS, though caution is advised for certain individuals, particularly those with a history of GBS. Still, as observed by a participant in the immunization program, the vaccine killed more Americans than the disease did. Because so many of us don't know the cause of our POTS or have had Guillain-Barr? or other auto immune problems, the vaccine scares me. I can not find any info on why it is different than other flu vaccines or that it is made any different than in 1976.

I can relate. Until my sons got their driver's licenses it was difficult. I can not tell you how much help it has been to me to have kids who can drive. I would get your daughter into driver's ed as soon as legal. The other thing I found helpful, is even if my kid had his learners permit, we could go places when I couldn't drive because I could ride rather than drive. My sons were in debate, and various sports etc. One of my sons was very good at mooching rides and had lots of friends who had parents who drove them places. They knew I was unable to drive and were very willing to help us out. I wouldn't be shy about telling people you need help with rides. My younger son was kind of shy, so I would talk to the parent of one of his friends on each team, tell them why I can't drive and arrange for them to pick up and drop off my kid every time. When other kids came over, I would make it clear they had to have a ride here and home. Now that my kids can drive, they are making up for all the rides they have gotten by giving lots of rides. Even now, when my son's bowling team has a match, my son and I ride with another mom and her son because I can't drive very far. I can't tell you how helpful it is to have a driver in the house. I dread the day my youngest goes to college.

You sound dehydrated. Make sure you get tons of salt and liquid. A bowl of chicken broth would be good.

I will not get the H1N1 shot and I won't allow either of my kids to get it. They said in the 70's it was safe and it killed and injured more people than the flu. I have a friend who has MS. When she was in the early stages of diagnosis, they thought her problems were due to having had the "swine" flu shot in the 70's. The neurologist she saw said he was seeing a number of people in their 50's who are just now showing symptoms related to that flu shot. I don't understand why it is different than the regular flu shot. I think most people find the regular flu shot is pretty safe. I read that they are going to make some of the H1N1 without mercury for PG women and kids. Why oh Why do they still put mercury in the flu shot to begin with? So, if anyone decides to get a flu shot, regular or H1N1, I would make sure it is with out mercury. I have no idea if mercury causes any problems but it just seems like a really bad idea to inject it into people.

My doc started me on .1mg in the AM. Then after a few weeks, increased it to twice a day. Then after awhile, to 2 in the AM and one during the day. When I got up to .3 I felt FANTASTIC for about 3 days and then felt pretty bad after that so he decreased it to 2x's a day. I have been at .2 a day for about 10 years with good results. If I had known what I know now, I would have started gradually and decreased gradually. But I didn't know any better and didn't seem to have any side effects from doing what I was told.

I get it in my big toe. No idea why. Always figured it had to do with poor circulation. I am just glad it goes away quickly.

When I eat Cheerios my urine smells like Cheerios. I have had meds that gave my urine a funny smell. Is there any connection between what you ate and when you get all buttery? Could your sweat be combining with your laundry soap and producing an Orville like scent?

I am sorry you are in such a stressful situation. I know that when my marriage was falling apart it made me much sicker. The one thing that I found really hard to learn in my marriage is that you really can't change other people. You can only change yourself. Trying to change other people is very stressful, and futile. Your boyfriend has only been widowed for 4 years. Replacing his kids mother's pictures with his girlfriend's seems like a harsh thing to do to his children. I'm not saying he couldn't add one of you, but he has a responsibility to keep her memory alive so they don't forget who their mother was. Was selling the house that was built for their mother his idea? Sounds like he wants to keep it, and I think there would be some value in keeping it for his kids sake. Imagine losing your mom, and then your dad sells the house he built for her. That seems like a really bad idea to me as a parent. People grieve in different time frames, some never get over the death of a spouse. I wonder if he is ready to be dating at all. Interesting that you said "She had kids". Are they your boyfriend's kids also? Do you consider them "hers"? Might be why you feel like the third wheel. I agree with him, I think you are trying to control a situation you have no control over. I think the question isn't "Should he or will he get rid of her memories/pictures/house?" I think the question you need to ask yourself is if you can live in the shadow of a dead wife?