MightyMouse

Hi Tim, I'll let Michelle answer the specifics on where to send it, but I can say that yes, if filing an itemized return, it should be completely tax deductible because of DINET's status as a 403-c nonprofit. Also, you're not getting any "premium" in return (like they do on public tv or radio where you get a "gift" for your $)--so the entire amount is deductible. When there is a premium, you need to subtract the value of that item from the total donation, and the remainder is deductible. As for corporate rules, I'm unsure as to what type of limits they have on how much is deductible, whether or not there is a threshold before it becomes "itemizable" like they do with individual deductions under medical expenses--must exceed 2% of total income prior to it being deductible. Nina

Hiya everyone. The past few times I've been to the doc my bp has been high. Today it was really soaring at 160/90. It's still high here at home, at 140/90. I have an awful headache and have felt aggitated all day. Part of me wonders if my bp is so high because I'm in pain (GI spasms are back with a vengance). Meanwhile... Anyone taking meds for high bp? If so, how'd that work out for you? Nina

Katherine, Here's the really short answer: Register, then go to iGive, and shop. That's it. Here's the longer explanation of how the online shopping donations work: 1. first register with iGive 2. to register, use the link in my signature line...by doing so, DINET gets an extra 1$ because it's a direct referral. 3. When you are ready to do your online shopping, go to the iGive website, click on the "Mall" button, and then browse the stores by type (i.e. computers, travel, books, cooking, etc.) 4. If you'd rather just shop by the name of the store, choose the "mall" link and then choose the "merchants a-z" link. 5. Pick your store, click on their link, and do your online shopping as you would normally do. If you've clicked through via iGive, you should see an extra bar at the top of your browser's page, which tells you the percentage donation offered by that store. 7. After your purchase is complete, your transaction will post to your iGive account (some stores post quite quickly, others wait until their item return period has past). 8. Once 25$ in donations to DINET accrue from all sources (all donors), iGive sends a check to DINET. On a happy note, DINET is up to about 103$ Yay! Michelle, post when they send you a check! 9. Always save your order confirmation email from the vendor until you see your transaction post to your iGive account. On rare occasions, transactions do not automatically post properly and need to be reported via their "missing transaction" page (under "my igive", then "my stats", "shopping". In 2 years, that's only happened to me once or twice. Nina:)

Problems with temperature regulation are common with people who have POTS. Folks typically complain of either being too hot or too cold, and having difficulty getting to a point where you feel comfortable. Once I get cold, I have trouble warming up...and if I get too hot, I have trouble cooling off. Nina

Purplefocus, I sure feel for you. I've been able to work f/t for most of my career, but i have gone through several more times where my symptoms have become accute and I've been unable to work. I've taken 3 leave-of-absences; one for 3 months, one for a month, and one for almost a year. I haven't told my current employer of my medical problems yet. I was just telling Michelle that I've been having a really tough time coping with my workload the past few weeks. I've been having intense nausea and GI pain for more than a month, and it's really been getting tough to get myself into the office and stay the whole day. I worry about the termination issue or at least being called into see my boss for the call-outs I've had. Hang in there as best you can. If you haven't gotten a good doctor to help you yet, I hope you find one. I don't know what I'd do without my docs, who patch me up and keep me as healthy as I can be. Nina

Hi Michelle, I read through a few of the article. It figures that the fairly "rare" enlargement of the spleen is exactly what happened to me the first time around. Do you ever feel like a medical train wreck? Geez. If it's a wacky, rare thing, I've got it! Nina

Oh, Michelle...do I really look THAT young or is it just that I'm REALLY short? I just turned 39 a few week ago Nina ps. my picture is on my homepage, always linked below under "www"

My 1st cousin (dad's side) has MVPS, a synonym for dysautonomia as she does not have any structural heart problems. Nina

Hey there, welcome back--good to know you're hanging in there. Some people who have peripheral neuropathy report having burning sensations. Also, it can be a sign of a nerve inflamation or compression. Lastly, it can be a symptom of other disorders. If it doesn't go away, see your doctor... I realize I say the above "see your doctor" thing lots, but I know how it is with us folks--I have all sorts of transient symptoms which my spouse and I just all "my wierd stuff". It usually goes away in a day or two; if not, I got to the doctor (just like I tell other folks to do!). Nina

I've had active mono twice, which is supposedly a difficult feat. The first time I got it, I was very ill and ended up in the hospital with an enlarged spleen and a secondary strep infection. There are many folks with POTS or similar autonomic problems who report a sudden onset of major symptoms following a viral or bactirial infection. Not sure how much it helps to know you're not alone; I know how horrible you're feeling right now. I remember breaking a major sweat just making my walk to the bathroom! Hang in there as best you can and feel free to use this place of vent and get support. Nina

Oh, one other thing. I've started taking some supplements... NADA, aka enada. I'd taken it before but wasn't certain it helped me. However, I'm more certain at this point that it at least helps me feel more alert/less exhausted by noontime. I've been crashing each day around then, however, I took NADA today and was able to feel pretty good until about 4pm! Will see how it does tomorrow as it's a long day for me... DHA is also supposedly something that's supposed to help with memory. At some point, I'd heard about Paracetam being useful with folks with brain disorders--it's made from a pine bark extract, I think? Have 't tried either and would be interested to hear how others have done with one or the other. Nina

Thanks so much guys--the cheers from you guys really help to keep me plugging along. Nina

I have a friend with major cerebral spinal fluid pressure problems, and I can tell when she's having a very high pressure day by her speech. She has had multiple cranioplasties, and probably needs a shunt. Not that this is your issue, but it's an example of how various things can cause the speech to be slurred. Yes, it can also be a side effect of meds, lack of sleep, and a number of other things. If it doesn't go away after adequate rest, hydration and nutrition, you should check with your doctor. Nina

Thanks folks! I've been feeling pretty proud of my self today; hope I can hold onto that feeling for when the semester starts again on Jan 20--I'll need the extra jolt of positive thinking as I'm taking 2 classes again. Yes, 3.9 is only a tenth off of 4.0... It does burn me a bit though because I worked so hard, but at this point I need to just think about getting through this program with my degree in hand. Didn't get a chance to pick up my frame today but it's first on my list for tomorrow Nina

Yes, sorry I wasn't more explicit about that. Teri and I have been together for 11 years; we're not married, but heck, we're on our 3rd mortgage together, which I think is harder to get out of than a marriage Nina

I do almost no cooking, and very little cleaning. I help where I can. I was able to live alone when I had a very small apartment 15 years ago--but I know I didn't eat well--I couldn't stand long enough to cook anything more complicated than spaghetti, so I lived on cereal, pasta and pizza delivery. I was pretty much a vegetarian, mostly because meats just took too long and too much tending by the stove/oven. Food shopping was a BEAST of a chore. I haven't done full-fledged food shopping in years. I suppose if I weren't working and going to school, I might be able to go it alone...hard to imagine though. I have a feeling I would end up moving closer to my family for the support, which is about 3 hours away. Nina

Hi all, some of you may recall that I took a very long exam (5 hours) on Nov 22...well...yesterday my paperwork came in the mail and I'm now a "Board Certified Associate Behavior Analyst" (BCABA). Now I have to go out tomorrow on my lunch hour to buy a frame for my pretty little piece of parchment! Also, I did okay on all my finals. I knew I wasn't going to keep my 4.0 after more than 2 years of very hard work. The classes this term were so hard! But, I did squeak out a b+ and an a- Dragged me to a 3.9....but as one of my friends says, "no one will ask you for your GPA once that Ph.D. is attached to your name." Nina

When I took proamatine, taking it 20 to 30 minutes before trying to get out of bed did the trick for me. My spouse left for work at about the time I needed to take it, so that was part of our kiss goodbye and have a nice day routine. Nina

Hey there Pamyla, my first ANS doc had me take potassium and magnesium (can't recall the doseage) and also CoQ10...and a few others things that my lame memory can't recall... Nina

SAFMEDS is an acronym for Say All Fast Minute Every Day Shuffle It's actually a systematic way to do what Ling was speaking of above. Once you're able to get through a one minute timing with a specified # of cards and without errors, you're considered "fluent." Fluency, in this regard, is a technical behavioral term for proficiency with speed. (I'm a behavior analyst by training). As such, it's been empircally validated (studied with research supporting it as a succesful training method). I personally use this method whenever I have an exam that involves stuff I find "uninteresting" or mostly needed memorization of facts. That's how I aced my ethics and psych law tests--lots of dates and key legal cases by name and resulting legal decisions. BORING...but I got an A. Here's a link describing SAFMEDS and how to set them up: http://members.aol.com/standardcharter/safmeds.html Nina

absolutely I am more symptomatic just before and during my period--in fact, I can't ususally tell if my period is going to be earlier than I expected simply by my tachy and dizzies. Nina

Oh, I should mention that I did have two accute mono infections--one at age 19 and another at age 26. However, I've had POTS/NCS all my life, with my first syncope happening before age 10. Nina

Pamyla, If you want some helpful hints with the nasal rinse system, just leave me a private message here on the board-- or email me. I now make my own buffered saline solution -- works like a champ and is CHEAP CHEAP CHEAP! The premix that comes with your kit works great too--but over time it gets a bit pricey. One quick thing--make sure you don't have the water in the bottle too hot--you're better off with a little too cool. You'll know instantly if it's too hot--it'll really burn. Nina

Oh, and my best illness prevention suggestion: Wash your hands often! I wash mine many times each day and keep antibacterial gel in my bag. Also, if you do shake hands with others, don't touch your face, eyes, nose etc. until after you get a chance to wash up. I sometimes wonder if my coworker think I've got some handwashing OCD thing, but hey, it's worked for me so far! Nina

Some steroids may impede the body's ability to fight off infection. However, with florinef, that's not a likely problem. The amount of steroid is miniscule. It's possible that the stressors on your body from having a chronic illness could be the problem--and other things may have an additive effect such as lack of sleep, extra stressors like seeing family at the holidays, etc. If you seem to regularly get sick, you should really tell your doctor as it may be something other than the meds or POTS. Nina