Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 Izzy, I am really impressed by the info, you posted (and others posted too)about Stevia, the juicing, etc. I think all of what you mentioned would be a fantastic addition to the Files. I am so interested in everything you mentioned and would love juicing suggestions or anything else related to reducing inflammation through diet. I know you are very busy, but if you get a chance.....please, please.. -Hadley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 Hi Hadley- Stevia is very very very strong to the point of being bitter unless you put a very little in lots of liquid. There are different types of Stevia to experiment with to find the one you like best. One book I like is " Sugar Blues " but I can't think of the author. It's someones independent observations of sugar and its bad effects on people. I never put tons of credence in indivudual opinion but I also have to say that a lot of products... or alternative treatments can't be 'rigurously tested' in standard research terms because it's difficult to establish controls. It's sorta like how cigararite.. okay cant spell that.. lolol... companies would say that research can't PROVE that smoking caused X and that's because you can't assign people to smoke.. as that's unethical. A lot of holisitc treatments are not direct.... accupuncture.. massage therapy.... rekki, etc.... everyone has little differences so its hard to establish. One place attempting to do research based on the standards here is NIH.. they have a institute to study integrative medicine and do what they can to try and accurately find out what works and what doesnt. They have a great website and can also be called to cross check if one or another medical drug interacts with an alternative treatment. http://nccam.nih.gov/ They are one of the smallest with a very small budget but I heard one of the doctors from there at a pain confernce... Dr Chesney... she's incredible. At one AJAO conference, one of the ped rheumies talked about borage oil, and another omega type oil. She said they definately DID help assist in reducing inflammation. She said it wasnt miraculous or it couldn't replace pharma antiinflamatories however it could help in the process. I wish I could remember which rhemy this was.... possibly dr Sanborge? I dont know.. very sweet doctor.. seemd very nice and caring..... this was something she said at the San Diego AJAO.. she even gave doses 'unofficialy " ... lol. Over the years, I've heard a lot about nightshade vegitables not being good for arthritis as they have some sort of problem.. too acidic??? and apparently our bodies are more acidic which isn't good. But there is something about these vegies in particular that may trigger inflammatory process. Wish I could remember what because I can't right now! i've heard some people say it's good to eat fish but not red meat or pork. Pork just because it isn't good for most people.. the sodium in it. Red meat has something in it that is also a precursor to inflammation. Something that most people can normally process but for people with autoimmune inflammatory disease might have problems with. Again, I can't remember exactly what it is but its something about the type of protein that interacts with prostaglandin production which causes pain. Fish is mostly good because of the omega 3's in it. The thing to watch with fish is making sure you look at those little papers in the stores that talk about which fish is safe and not environmentaly strapped. Some places, it's good to get fresh water or farm raised whreas other cases, iyou don't want that. It's better to get salmon from the pacific north west/alaska and not the east coast.. that type of thing. Shellfish can increase pain as well.. some is an experiment... over time, I have found certain things really do increase my pain like grapefruit, shrimp though I love it.... too much orange juice... I think a lot of stuff we get used to so we dont realize our bodies don't like them. I have a history of major allergies and got desinsitiezed to a lot so I eat dairy even though Im not supposed to. I have to limit it and can't drink whole milk but I still take in some. I took myself off dairy for a year and a half and didnt feel any different until I had some cheescake one day. I got sick as a dog and no one else did!!! I admit, I eat meat but I try to limit it as much as possible and eat mostly chicken, fish. I think the more you read, the better. Of course, there are a million opinions out there. I really like the raw food thing as it makes since. There is a guy who writes a lot about raw foods and why they work as well as what it means to have a balance between acid and alkaline states in the body. I know Dr Oz has talked about some of this as well on Oprah and Discovery Health. Also that one girl.. Snow talks alot about organic food and the benfits of it for the body. I am majorly into organic foods and do find that the jucing does seem to help my stomach and keep me regular... It's hard to eat a lot of veggies sometimes so juicing helps a lot except it often strips a lot of the fiber. the best sort of juicer to have is a masticating kind which crushes the fruit cells but not Spin it... Spinning adds oxygen which breaks down the good health of the fruit. Sure it's better than not having it but the more you keep it in tact and without oxygen, the better. Jucing takes time.. it's a pain to do but its been well worth it for me.. I often do carrots, beets, dandolion greens (only 2 cause im kinda allergic but my holistic doctor swears that it helps to clean the liver and that in small doses, its worth it.. sooo.. lol I do it).... a little ginger, spinich. That's the main one I use. Zucchini also taste not bad in juicing. Adding something like a green apple or a fuji apple... something firm enough to not be like applesauce when juiced adds tons of sweetness to the juice and makes nearly anything taste good. The carrots do as well. You would be amazed at how sweet these juices come out to be. There are a lto of recipies online in different communities into this type of thing. You can also uise the fiber left over in the juicer and add it to soups, muffins, homemead breads..... seen other recipies as well. I have a nice food dryer with trays. It's wonderful.. you can make your own fruit roll ups.. lol.... and also just any fruit. My favorite store is Trader Joes because it's prettyu cheap and has tons of raw foods that have a good taste. My allergist told us long ago to not feed me processed food ever and the fresher, the better. Im sure there are tons of opinions on this but I do believe what you eat makes a different. Of course, im really overweight so tjhat doesnt help me but I think that had I been doing this growing up, it would help a load. I always take everything with a grain of salt in terms of alternative medicine.. well 'traditiona' medicine too because well just becaust its natural doesnt mean anything... so is arsenic... LOL. And just because they aren't the FDA or some other pharma doesn't mean they arent out to take advantage of people with illness either!!! When I run into one of my books or a good website, I will pass it along. I think this should be in the files too... good idea about that. Issadora On Fri, Mar 7, 2008 at 9:49 AM, hadley_messner <hmessner@...> wrote: > Izzy, > > I am really impressed by the info, you posted (and others posted > too)about Stevia, the juicing, etc. I think all of what you mentioned > would be a fantastic addition to the Files. I am so interested in > everything you mentioned and would love juicing suggestions or anything > else related to reducing inflammation through diet. I know you are very > busy, but if you get a chance.....please, please.. > > -Hadley > > > -- " Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI- Silver and Cold). my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 Izzy, Life is not right and it is not fair, I doubt any one out there will argue that point with you. It is so hard sometimes to just get from one day to the next when you do not have any real health issues and so when you add the chronic issues into the routine it just gets worse. I am just learning all the things we have to deal with. I have only been working at this clinic for 8 months and I love being there and being able to help others that really need it. Many of our patients expect us to treat them and give them all they need because we " owe " them. But the majority of our patients are happy to pay the low fees we have to charge and are thrilled that we have the variety of providers available to them. I pray that you will be able to get the care you need soon. Veri Re: Izzy right... that is the kind of clinic Im at.... I'm considered under poverty level right now as I don't have any income right nowa nd not able to work. My mother is on disability. I am getting dome food assistance currently but that's it. So with CMS, they are taking care of my chronic illness supposedly but actually aren't..... it takes forever... has taken over a year or nearly two.... I havent been able to see all but one of my specialist and they threw their hands up because I have CMS> They are basically allowing me to get sicker and I had to fight them just to get the right medications. In fact, another program I belong ti get's me some of my meds through the drug companies. Im just annoyed because I see the major health disparity and that a lot of the cause is the social system, not the individual. Ever since I got out of college and landed here, my diabetes, pain, arthritis, asthma and everything has gotten worse andmy problems/compalints are contantly overlooked. I have to be incredibly persistant nd they started out treating me like a drug seeker and would leave me sitting in the waiting room for hours and hours. Anyways... sorry im complaining.. just so ticked off. It isn't right or fair. Issadora On Sun, Jul 20, 2008 at 4:35 PM, <veristroud@...> wrote: > Izzy, I read your posts and feel for you. I work at a clinic for the > uninsured and underinsured and I have found out how difficult it is for > people to get in to see the specialist. We work hard to get our patients > scheduled with a provider and often it takes three or four months before we > can get them in for major things. Here if the patient has medicare or > medicaid we can eventually find them a doctor to see. If they have no > insurance then we often can find them a provided as long as they have $500, > $1000, or $1500 in hand when they walk through the door. 77% of our patients > live below the 100% poverty level and so you can imagine that at least?99% > of them do not have that kind of money and so they have to go without the > care or go to the emergency room where they are treated and sent home. But > they are not taken care of in the way they need. GRRRR I wish there was an > easy answer or even a difficult answer if it would help people get the care > they need. At our clinic we have a general surgeon, an orthopedic surgeon, a > pediatrician, a doctor of emergency medicine, a internal medicine > specialist, several family practicioners and ARNP's. Most of these are > volunteer doc's and they only come 1/2 day per month but we are delighted to > have them. Many days our nurses spend most of their day trying to get > referrals for our patients. > > Veri & Jaye 14 poly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2009 Report Share Posted May 10, 2009 Izzy: I will let you know. As of right we are doing well. I can tell you that the rheumy is very frustrated that there has very little research done in the last few years for Osteoarthritis. It's the number one type of arthritis, and gets the least amount of funding. As of right now there are no meds specifically for OA its pretty much treat the symptoms. As always thanks for your insights and support. Hope you are feeling better yourself. Hugs. Beth " We can't direct the wind, but we can adjust our sails " -author unknown ________________________________ From: Issadora <FlyfreeIzzie@...> Sent: Sunday, May 10, 2009 1:43:02 AM Subject: Re: Finally a probable diagnosis! i know someone with a OA childhood disease but can't think of the n ame of the disease.. it's unusual... she has fairly severe arthritis but its OA from early childhood and uses a wheelchair off and on. She's in medical school now. if you would like me to ask her to talk with you all,,. i will... she's really cool and nice. She's working in her pediatric rotation now and I know her via online. She is rather short for her age. She is a great writer, funny and well of course, inspiring.. ha... anyways, sounds like things are getting closer and closer to an answer for Hannah. Hugs Issadora On Sat, May 9, 2009 at 10:58 PM, Diane Wiederholt <hockeytough>wrote: > > > Hi Beth, > > I guess this is probably a bittersweet diagnosis for the both of you.. > Now we will just pray they come up with a way to help the both of you to > ease your pain. > > People with Osteogenesis Imperfecta also have hypermobility, because > Maggie is in her chair most of the time now we don't notice it so much but > when she was up and walking around it really exhausted her to keep > everything going in the right direction!! She also hyperextented her knee's > horribly which made her very unstable. She would stand, run, fall and > break! (not such a great combo!) > > We are thinking of you guys here in Iowa, things have been so busy trying > to take care of both girls. Allyson has responed beautifully to her meds, > now if we can just get her to continue taking them. She is a freshman in > highschool and knows so much more than both her doctor and I. Maggie is just > Maggie and as always her life is chaos! > > Take care and have a wonderful Mother's Day!! Sending hugs to Hannah > too! > > Diane and Maggie age 11 (OI,CP, Autoinflammatory, Autoimmune, Primary > Immunodeficiency, Uveitis..... etc etc > Allyson age 15 (Lupus, Poly Arthritis) > > > > > > From: Beth Yohnk <yohnkmomsbcglobal (DOT) net <yohnkmom%40sbcglob al.net>> > Subject: Finally a probable diagnosis! > @group s.com < %40gr oups.com> > Date: Sunday, May 10, 2009, 1:22 AM > > Hello everyone. > > I haven't posted much lately as not much has changed with Hannah. She > still has widespread joint pain with occasional swelling in her hands/knees/ > elbows and ankles. If you remember she is extremely hypermobile in every > joint. She has also been getting treatment for vitamin d deficiency, which > contributes to the joint pain. She had been up at 1,200 units of vit d > daily, which she did for 6 weeks. When he bumped her dose up her level got > up to 26 (32 or better is the goal). When we repeated the labs she actually > dropped back down to 20. She is now on 50,000 units weekly and will take > the last dose tomorrow. Repeat labs one week after that. > > The other thing that has happened is that I have developed joint pain in > most of the same joints as Hannah. I had already been diagnosed with OA in > my back and neck. Thursday I took my first trip to a rheumy. He was awesome > and thorough spending over an hour with me. He took the most involved > history I've ever given. When we got to my family, he was quite intrigued > with Hannah's story (his exact words were tell me everything from the > beginning). After an extensive exam he diagnosed me with OA secondary > to Hypermobility Joint Syndrome. Turns out I'm hypermobile in every joint > too, including my feet. He said without even seeing Hannah, based on what I > told him she has the same exact thing. Interesting how someone who never > saw her came up with this and 6 years going to doctor after doctor couldn't. > > Hope you will continue to accept us here. There are NO groups for kids > with OA. We could take Hannah to see this doctor, unfortunately he said > until they come out with a real med for OA, there isn't anything more he > could do for. He assured me we are doing with right things with her braces, > ice, Tylenol, etc. and to let him know if I have any quesitons about either > one of us. WOW > > Beth & Hannah, 12, probable OA secondary to Hypermobility Joint Syndrome > (HMJS); asthma; vitamin d deficiency. > > > > Beth > > " We can't direct the wind, but we can adjust our sails " -author unknown > > Quote Link to comment Share on other sites More sharing options...
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