Sophia3

Jacquie I am not familiar with what State disability IS or what it means?! Just don't be upset if things don't happen within a time frame given. For my initial claim to start it, I believe it was within 4 months and I found out in early december. Who TOLD you this information? I have learned from the Disinissues website, trust nothing they say on the phone and believe it when you see it!! Things have no rhyme or reason but it's all about YOUR LIMITATIONS. Chances are, if the doctor in charge stated your limits, then things hopefully will come on through w/o a fight. Just remember, no matter what happens, don't take it personally. The like to make us jump thru hoops but just persevere!! I have been through some hoops in the last 15 years!! Trust me. Best to you.

I know some antibiotics differ in how long they are taken. I went back to the NP at a doctor's office where the doctor is allegedly very GOOD as is the NP I have seen twice in 4 years. Last week I had 3plus blood in my urine and a bad yeast infection. Took yeast med...burning is much improved though still there intermittently or feels hot. Today, 'trace' of blood. She said taking Macrobid was up to my discretion at this point as there was not white cells to indicate an infection was present so nothing to send out for culture. She said they use Macrobid for 3, 5 or 7 day rounds. Could this be because they might give it in short doses to pregnant women?? Should I even bother taking it? The cranberry capsules are more expensive when you add up how much to have to take them a day, and finding unsweetened cranberry juice is tough and the sugar kind doesn't help acidic balance. I don't want to email my normal ANS doc YET again as he ok'd the macrobid last week in email. But I figure, maybe we are nipping this in the bud since 'no infection' and much improvement in 5 days? I don't know what to do. Has anybody ever heard of short term use of Macrobid? I found NOTHING on the Internet shorter than 7 day dose. I am stumped.

While I have read for 18 years about the mercury in Tuna, it has gotten worse. I haven't eaten the stuff in years and will NOT use as a treat for cats, either. Sushi is popular with many and I though I should post this here. Both have been in the news for a long time but the sushi story I just saw online today. **Editing the fishing hurts site..it has a political agenda but I can assure you MOST fish is contaminated, especially farm rasied fish....it was all over our local news in recent weeks...will find another article later. I thought it was common knowledge about tuna and that pregnant women should NEVER eat it but the mainstream media is acting like this is 'new'. Shoulda checked this link better..sorry Wild Salmon is still considered safe but not the farm raised. http://today.reuters.com/news/articlenews....USHI.xml&rpc=22 We are so sensitive to things I thought some may be interested in this stuff. not to mention the neurological connection.

Smoking is bad but nicotine can be helpful to our blood flow issues but it's been years since I read that..it may even be in one of the old paper articles I can't find! The patch was mentioned as helping with some ANS. My doctor once brough up 'smoking could help that' but was kidding and just talking about the nicotine aspects. This was years ago. perhaps somebody can help us. I do know at a site I used to go to with lots of NCS folks, there were quite a few smokers there and they swore it helped with BP and fainting issues. Hence, if that were my case, I would probably go for nicorette gum or cut a patch in half and wear it. It's been too long since I heard of the "blessings" of nicotine. I also remember there being a connection to help Chronic Fatigue syndrome.

Janine, Well, it sounds like your going in as prepared as possible! Very good. Too bad you can't get a T-Shir that reads. Don't even think about telling me it's "menopause and anxiety" I own a gun..and I'm short on estrogen. Kinda sounds like it would go with your mood! Good luck. I hope the docs take you seriously.

Yes, get adrenals and some other things checked, for sure. If you have access to endocrinologist the better. My endo is of the belief "tests can be fine" but the gland can spurt out intermittently and we don't always catch it. I don't take supplements for it due to other blood work being normal or sometimes a bit high normal, then later low.. Orthostatic stress may affect cortisol levels. I once was FORCED to sit while waiting over an HOUR in the AM, to get blood work years ago and felt ROTTEN when they drew the blood. I almost passed after the draw and the nurse ran to get me a Coke! My cortisol was high normal then..first thing my doctor later asked was how I felt that morning..I said forced to sit up, stressed and Queasy. So we attributed it to that. My eyes and skin look normal but he noticed years ago, the lines in my palms are slightly tan which he has ALWAYS found curious since blood work is "normal". I am very light skinned. In YOUR case, if things are "normal" there are certain supplements or herbs that may help but you have to be careful since they aren't regulated. Check with your doctor and good luck.

Futurehope I don't know what is going on..Intermittent.....sometimes it's still burning and other times the urine just feels "hot". I am going back for a check- the -urine deal on Monday. Thankfully its a 90 second drive for me. I hope you are doing ok.

Please sign up for the disinissues email based site!! I have recommended them SO OFTEN, I have had to disclaim, I get no kickbacks from them Also be aware it is STRICTLY a disability web site. Also check thru the links and other stuff listed to the left of the column. If you receive a strict or even hurtful lashing from one of the mods there, think NOTHING of it...she is like that to everybody...but she is WORTH HER WEIGHT IN GOLD for the info she can help you get. As is the ENTIRE GROUP! I can NOT recommend them enough. And like others said, Soc Sec Dis doesn't care what you have..its' strictly based on MEDICAL limitaions. Now the SSI or even the "Medicare Beneficiary" program want to know about every quarter, nickel and time you have. I was on it for awhile...Helpful but if you have a care or somebody gives you $4001 dollars, it bumps you out of the "need" category...at least in Ohio. Doesnt matter if you Soc Sec check is $150. THey STILL won't help you because a car, savings or tiny mutual fund of 4 Grand puts you in the too rich category. Insanity but not worth griping about as it won't change.

Like it!!!!!!!!

Futurehope, I hear you on these things...I am still trying to figure out if it is indeed UTI or severe irritation from yeast and not the medicine I used doing it's thing. Others, My room mate went to the store and got me some Uristat. It helps with burning and it turned my urine orange and then a deep red (said it might do this) It helped some but then didnt' That leaves me to believe it isn't the urined itself burning -all the time as it empties out...but if it hits, uh, certain irritated skin..if you get my points. BUT it was great to drink 3 glases or water and Gatorade after I took this stuff and I finally got out of bed for an hour and 15 minutes! But you girls that go through this stuff with ANY regularity have my EMPATHY and SYMPATHY. This bladder stuff ain't for sissies. But then again, neither are yeast infections and have gotten them my whole life...get them now due to estrogen dominance and I don't always remember to take my prometrium at the right time of month...since the "female time" now varies by a few days. I am glad to hear from my doctor and you guys that Macrobid is tolerable. I think I remember the name Bactrim, when I worked in an ob-gyn office. But I think tha is a sulfa drug and would want to stay away from that as well. Thank you again for your responses. Perimenopause....Just have to roll with the punches, I guess.

THough he is now dead, the late great Dr. Streeten came OUT of retirement to study dysautonomia and chronic fatigue links. He was so fascinated because he had found many pts of his to have delayed fatigue and delated orthostatic issues. Linda Smith of NDRF, told me he was known as the father of dysautonomia. He studied it for years and was very compassionate as well. A sweet, gentle man whose likeness was, thankfully, recorded on the ndrf conference tapes. He was amazing. Dr. Grubb has the same gentle manner. There is a very old, now out of print book, by Dr. Streeten I read through years ago. When a friend of mine worked at a nearby hospital, he got it from their medical library. It was interesting to read but didn't have much about POTS per se. But he was another one that spent lots of time with a patient. And he was ahead of his time on dysautonomia, a disorder few doctors cared or had the patience to research. Here is a link that tells about Dr. Streeten. http://jcem.endojournals.org/cgi/content/full/86/2/471

Dr. Grubb is good but can't help some of us that were sick years before we heard of the guy. As far as ultimate 'POTS specialist..I am not sure there is such a thing. I was talking to a former Vandy pt the other night and while her treatment there years ago, was excellent and helpful, they told her they had yet to see a POTS pt over 50 and thought it just went away with menopause. Nope. Not true. They no longer say that I am told but she WAS told that in the nid 90's... Dr. G told me to expect things to change after menopause, probably for the worst..no way to predict since underlying causes are so complex...so who really knows..... ...it just depends on what some of the specialists can do for individual situations. You will hear conflicting info on ALL the "research centers". Also, many places have different theories and getting the egos left at the door to share and compare notes is not always an easy feat. I had this discussion with Dr. Grubb and he said it was like "trying to convert people to another religion to change their mind about dysautonomia"...I know that went for many centers, no particular one. so that is not bad mouthing anybody or place...just how it is.... Dr. Grubb is way too busy for a one doctor ANS specialist so I hope he takes care of himself. I also hope he remains cancer free and learns to take more time off for HIMSELF. It is true many come from all over USA, Canada, UK and as Jan mentioned, Africa to see him.

Morgan, You get the pithy award!!

I just have one cat observation. Why IS it, no matter how big the bed, one cat ALWAYS wants to sleep against my lower legs?? sometimes near the upper body but 90 %, lower legs. I often wake up on the diagonal or with stiff legs because my knees are bent as Marty is on my side of the bed where my calves should be! LOL. Before I fall asleep, if he is on my lap or on my legs, I gently move his 14 lb, long body off of me and to the side. But by morning ? ? ? I have a queen sized bed but when I had a king...same thing. Oscar is wise enough to sleep on the other bed or snuggle up by my shoulders....BUT when I get up out of bed, Oscar hogs the warm spot and curls up by my pillow. THIS is when his "autistic" like nature reveals itself. "I don't WANT TO BE TOUCHED". He will bat his paws at me, roll up like a pill bug and squawk...SIMPLY because I want to lie back down. Somedays he is so moody, it's kind of scarey but usually then I just pick up a cat toy and throw it and he leaps off the bed. We could do a whole thread on cat stories and i could go on forever. It would make a great 'sleep aid' for folks as I can be shameless and verbose!!

NIna, that is great you have a vet who makes house calls. Many moons ago when I was married, we lived in a huge apt about a vet clinic and the vet was our best friend. He came upstairs to give shots and downstairs was an easy walk for exams!! For free! SPoiled. My cat Oscar is kind of a Houdini (Imagine a partially autistic kid mixed with Tourettes)! He has mild Feline Hyperathesia syndrome...mild case thank GOD!) I often have to wrap him in a towel to get him in a carrier! He also has "spells" were he grunts and barks and runs around the room and stops to do some manic grooming! It's kind of scarey but he is really a sweet kid and I have socialized him since getting him as an orphaned kitten!! We are tryiing to give Buspar to my room mates cat and she is such an aloof thing, she will not let me near her anymore and I had to do sneak attacks as it was to get a pill down her. I tried picking her up in between and brushing her and giving her treats. Geez, we need a dart gun to give her "shots" of this med from across the room but don't think they make that for domestic animals. LOL. Glad to hear your cat food deal is giving my theory more credibility. Your kitty has had a great life to have lasted this long and it had to be good genes AND good mama!!

Nina I am SO glad your Kitty is ok, now. They really our "kids" for many of us. And to live 20 years. Just curious, what kind of cat food do you feed her? I have this theory that all this EXPENSIVE PRESCRIPTION cat food causes more ills (kidney failuer, heart dissease, example) When my one cat, who still seems healthy happy and playful except for some excess water drinking now and then, was dx with very early kidney failure after I demanded test. I "had a feeling". My vet called me and said "mom was right", the BUN level was elevated and the creatinine and a couple other things. I told him I was tired of this as I gave my indoor only (safer!) filtered water, lots of toys and a big cat tree, the best food. He said "I know. Our barn cats eat purina cat chow and have outlived every cat we every had. Now we have 4 dogs". Another person I know just feeds their cat cheap stuff and their cat is 20! so my cats have to eat low residue due to potty issues. So, I know your cat may be on special diet now with diabetes..but just curious on what kind of food she was on normally. My next batch of cats are getting food from the grocery!! when you get adopted pets, you have no idea the medical background. Again, I am glad Jeri is ok.

YES! To being intuitive to others. Often I pick up something from a person that nobody else does. A few times a year, I have a dream about somebody I haven't seen in years...then I hear they are in hardship or something. I am not a psychic and don't believe in that stuff but sometimes my being in tune with others is scarey. I knew when I met my room mates brother and his wife years ago, there was something "off". They were nice people but seemed to lead independent lives. Or the wife did and her family was ALWAYS dropping by like it was their house. I just felt even though we laughed a lot when together, all was not well, Within 6 months they were separated and got back together and then finally divorced. All saw the little signs (normal to most people all along) and the divorce came as no surprise to me. But it did to others. I think it is strong female intuition...but now "psychics" use the word "intuitive". I watch how I use the word now so as not to offend OR give off the wrong impression. It's like a strong sense of empathy and kinda sorta ESP but NOT really. But I have a friend who is an identical twin and several times over the years when her sister has injured herself, she would feel pain in her leg of back and find out later, her sister had gotten injured in another city. And when her sister got pregnant, she was nauseated for a couple of days even after she found out her sister was pregnant. So after the fact you can say she "Imagined it or it was psychosomatic". But what about before she found out? The brain and human spirit is a powerful thing we do not understand. However, I do not believe I have ever been abducted by space aliens.

I agree the smell of MANY PRODUCTS is too much. even so called "natural/organic "products, use too much 'aromatherapy" stuff. My sister once gave me this 'natural lipstick". I had to wipe it off immediately due to the smell. Just what MAN thought it was a good idea to have a strong/perfumey/chemical smell under our noses? Literally. I use an old fashioned piano stool in the bathroom to sit on and wash my face and put on makeup. Also it's what I sit on to sponge bathe since I can only stand in the shower with hot water in the winter about every week or 10 days. In hot weather, I can take warm water showers a little more often, depending. But we keep this house mostly at 68- 65 degrees. Chill in shower unless the water is hot. I also kneel on the piano stool some days to wash my hair in the sink. The bath room sink has a tall gooseneck faucet that swivels. It's very helpful to wash hair with knees bent and close to my chest as I lean forward! Least it works for me.

Jen I am glad you got things confirmed and your doctor came through for you. That is always a good thing. good luck and rest up after the big day you had.

thanks for the quick replies...I went ahead and emailed my doc and he emailed right back it was ok to take this med...not as potent as some other systemic drugs. Yikes. but this burning...oy vey! Thanks for the feedback.

Ok, I rarely take antibiotics as they make me sick I have a yeast infection and we think it may have irritated things to cause a bit of blood in urine. But if the burning isn't gone by monday and I still have blood in the urine, they want to put me on Macrobid at the gyn office. They CAN send out a culture. Should I demand this or just suffer thru the macrobid to stop this burning/blood in urine? I know a culture could lead to suggestion of newer more expensive antibiotics. I am thinking of emailing my ANS doc but didn't want to bother him if I could get some answers here. But this feeling like a lit match when you empty your bladder is no picnic either.

Corina, I am saddened to hear of your frustration and how one comment from a doctor might have ruined this for you. I saw a neuro ENT a few weeks ago familiar with ANS and even had Dr. Grubbs' book...and went on and on about how this is a complex illness to treat...blah, blah, blah. and had a complete change of face on my second visit. I wont go into it here. You sometimes want to ask "are you the same doctor I saw last time??" "Did you have a lobotomy?" He wasn't a doctor I would have to see again so I let him pontificate his "clueless opinion". But when it RUINS a chance at rehabilitation for somebody like you, that makes me mad. I hope you are able to get things straightened out..tie another knot in the rope and hold onto your sanity and frustration level (Easy for ME to say I know) I just feel helpless when I read about this kind of treatment. Do keep us posted. Sophia

WOW! Melissa...thanks for your reply. I knew I asked a lot of questions but they came to me at the same time. This is great to know and keep on hand. Sophia

Thank you so much for the link!! The link was helpful.

-------------------------------------------------------------------------------- Ok, I read about a month ago somewhere (it was on my computer before it crashed) that Dr. Low of the Mayo clinic told some of his patients to take Alpha lipoic acid. Well, I got a small dose 100mg, but I burp it up afterwards...the oil. It's gross. It reminds me of 26 years ago when they came out with fish oil caps and I tried those...NASTY after taste. What is "This stuff". I remember it being good for nerves to communicate via ANS? I have tried it a few times and thought it was because I took on empty stomach. But food stays in my stomach so long, I am afraid to try it with food. I did try digestive enzymes. At least this was a $5 bottle. but gosh. Also, if anybody has that blurb about Dr. Low, please let me know the link. Thanks.