Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 To Par4422 and Floyddog Welcome-but sorry you have had to find us. I have had PA for 12 or so years, and only rarely have had sausage digits. But the trigger finger thing-that's another story. Fatigue is so often the worst thing for us to deal with, and I believe we forget just how much coping with chronic pain and stiffness takes out of us-that adds to the fatigue. I don't have any " miracle " solutions, other than to report that regular physical activity, no matter how minimal, does help me; please read carefully what Fran sent on Chronic Pain management-managing pain will definitely help with the fatigue somewhat. I also recommend the website that sent me to this group: www.arthritisinsight.org It has lots of helpful, sensible information; including sections on meds, commonly used lab tests, and other thing. Good luck to all, and feel free to write and ask for advice-we all help each other in this group. D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 Ashton and I use a type of ID that is called S.O.S medical identification. It is really cool. It seals like a watch does, so water can not get in. It unscrews and inside is a folded, long, piece of paper that gives you room to put tons of informtion. They have necklaces, bracelets and sneaker ones. We both have the necklaces, but I bought a different chain for them. Ashton wears hers all the time, except when she has a soccer game. I have a question for everyone. Ashton is sleeping or complaining about being tired all the time. Ashton had the flu a few weeks ago, and is doing pretty good. She still has a cough, but it is much better. She doesn't have any symptoms of a virus etc. Is it just she is in a growth spurt or something??????????? She is finally starting to grow now that she has been on IVIG a year. Can growing do this or should I be worried about something else? She has had mono before. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 Ashton and I use a type of ID that is called S.O.S medical identification. It is really cool. It seals like a watch does, so water can not get in. It unscrews and inside is a folded, long, piece of paper that gives you room to put tons of informtion. They have necklaces, bracelets and sneaker ones. We both have the necklaces, but I bought a different chain for them. Ashton wears hers all the time, except when she has a soccer game. I have a question for everyone. Ashton is sleeping or complaining about being tired all the time. Ashton had the flu a few weeks ago, and is doing pretty good. She still has a cough, but it is much better. She doesn't have any symptoms of a virus etc. Is it just she is in a growth spurt or something??????????? She is finally starting to grow now that she has been on IVIG a year. Can growing do this or should I be worried about something else? She has had mono before. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 Oops! Forgot to sign my name on the email about Ashton L. Mom to Ashton 11, CVID, Asthma, Dyslexia & Marina 8 Asthma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 Oops! Forgot to sign my name on the email about Ashton L. Mom to Ashton 11, CVID, Asthma, Dyslexia & Marina 8 Asthma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 In a message dated 3/29/2005 12:38:26 P.M. Eastern Standard Time, Nanashmar@... writes: I have a question for everyone. Ashton is sleeping or complaining about being tired all the time. Ashton had the flu a few weeks ago, and is doing pretty good. She still has a cough, but it is much better. It can take a while for the body to get back to normal after the flu, being tired can last a few weeks. If it were to continue or get worse instead of better I would get her checked out. Hopefully she will start feeling stronger soon. Janet, Mom to Brittany, CVID, age 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 In a message dated 3/29/2005 2:03:07 PM Pacific Standard Time, rn4premies@... writes: purses maybe a backpack if it is there and they are looking for an ID only. I have been told by a cop friend of mine that if I carry anything for medical reasons to put it in front of my license. They legally must stop looking once they have found your ID. Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve transplant (2003), asthma, Carnitine deficiency, GERD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2005 Report Share Posted March 29, 2005 In a message dated 3/29/2005 2:03:07 PM Pacific Standard Time, rn4premies@... writes: purses maybe a backpack if it is there and they are looking for an ID only. I have been told by a cop friend of mine that if I carry anything for medical reasons to put it in front of my license. They legally must stop looking once they have found your ID. Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve transplant (2003), asthma, Carnitine deficiency, GERD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2005 Report Share Posted June 20, 2005 This is in regard to fish oil and seizure meds: As an adult, I have been put on the anti-seizure medication - Topamax for migraines. When I first started taking it, I was taking Omega 3s. I could literally hear my brain buzzing. I researched the medication and found out that it is a neuro-inhibitor and Omega-3s are neuro-stimulators. When I quit taking the Omege-3s, the buzzing stopped. For those of you who have children who are taking anti-seizure meds, ask your doctor or pharmacist about introducing Omega-3s. It was a very unpleasant experience to have my brain buzzing. I can imagine that a child would find it difficult to deal with. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 -Speaking from an adult point of view, now I do not have seizures nor do I take any meds of any kind. Here was my experience taking various forms of omega 3/omega 6. One proefa I am fine with, if I up the dose to two, I feel some stinging/burning in my eyes, kind of like a pollen/dust problem. Up it to 3 it is REALLY bad. Taking EPO oil, I got breast soreness, my NT 14 year old suffered the worst period cramps in her life taking EPO, that is what I find bizzare as it is touted as great for PMS. If I take the proefa, with Carlsons ACES (antioxidants A, C, D, E and selenium, I can handle the higher amount of fish oil), but since I have had the problems with it, I feel it is my bodies way of telling me too much for me is not good.Everyone is different, comes into it with different genetic background, and where you are living sun exposure etc, has a huge influence on how you metabolize fatty acids. Again just my experience.I also know of a child that her seizure threshold was lowered with epa/dha, but she does wonderfully with DHA. Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Maybe this has been asked before, but has anyone compared the stones from a removed gallbladder to that of those from a flush. Not only physically what they look like inside and out, but chemical composition? This seems that it is something that would be fairly easy to do. Find someone who is having theirs removed and is willing to take home the stones and send them to someone who is doing very successful flushes. At least at first site one the outside, then breaking them open or smushing them, one out to be able to at least conclude that they may or may not be the same thing. From there, if need be, I'm sure if all of us still with our gallbladders wanted to help, we could all send that person a few bucks (maybe via paypal) to help pay for a lab to compare the two. Is this feasible? I have only done one flush and would rather have someone else who has done many flushes with good results lead this, but if need be, I can do another and save the stones. Then we just need to find someone one the board who is going to have the surgery. Any interest out there? Thanks. Curtis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Curtis A. Calderon wrote: > Maybe this has been asked before, but has anyone compared the stones > from a removed gallbladder to that of those from a flush. Would it be a viable comparison as the ones removed from a flush are supposed to be softened in order to pass, while I assume those from surgery would be very hard. Does this make sense? Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2009 Report Share Posted January 26, 2009 Go to wallmart, Buy a A123 12v Garage Door Opener battery ($1.44) , Inside (unwrap carefully) you will find 10 tiny stackable tiny coin cells which are perfect for wrisband zapper configurations. Do not solder to these.. they may/will explode - it has to be done verry fast (spot welded) as most home irons do not hace enough surface-are or WATTS to head quickly, and the solder will not stick easily... Instead, you can mix alot of clean metal filings with clear nail-polish and 'META-GLUE' the wires on. Mine use a pair of button cells facing opposite directions, shined up bright and clean with a bit of steel wool, which also scratches the surface and makes the META-GLUE stick better, a 1/8watt (teeny-tiny) resistor between them META-GLUED in place (to control current at your comfort level) and the opposiet sides up against the 2 wrist-points. Fotr other body areas, you can make battery attachment clips out of envelope corners and paperclips and use META-GLUE to wire em up ;-) On Mon, Jan 26, 2009 at 7:36 AM, < > wrote: > Batteries are Cheaper than Funerals Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.