Guest guest Posted March 2, 2007 Report Share Posted March 2, 2007 Hi Irene, Just wanted to welcome you to this wonderful group. I, too, am new to this site, but the information gathered here has been enlightening, appreciated and warm. Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2007 Report Share Posted March 2, 2007 Thanks Norma...it is overwhelming....the information on the site. So much to learn, so much to read and digest and so much else to do!!!!! Thanks again. Irene Re: Re: Welcome Hi Irene, Just wanted to welcome you to this wonderful group. I, too, am new to this site, but the information gathered here has been enlightening, appreciated and warm. Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2011 Report Share Posted January 13, 2011 Hey tell us more about your self. Statins usually lower cholesterol...some people do have side effects from them though. What is a proangler? I am sorry you have this disease. Are you Ok these days? Where do you live? Liz NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2011 Report Share Posted January 13, 2011 I live in Tucson Arizona. Yes; I had a reaction to Statins. Professional Angler; Angler is another word for fisherman. I have a history of Bass fishing and product testing new types of fishing equeptment and got to keep all the products. I am a member of North American Fishing Club. This is the biggest fishing organization in the country. I am a life member ( Trophy ) member. I am also a member of Bass. I can go on the circut like the golfers due. I got Stills 3 years ago and have not been on a lake sence. Male 57. Fishing is a huge sport. I have many symptems of Stills daily. Hospilized 4 times in 3 years with the last one in ICU due to Acute Stills attach with Renal Failure in a coma. I came out of the coma after 4 days . When I went to the hosp. my blood preasure was 50/20 with shallow breathing. I lived alone and was in a 5 day blackout.My daughter came buy to see me and found me face down on my keyboard. Much more to the story but that last hosp. stay was almost my last day on earth.My daughter saved my life. I also had a stroke 2 months ago and don't know if it was Stills related. I have recovered from the mild Stroke but still have some face pain which is going away. Not on any meds but should be. I am a Veteran 57 male and I go to the VA for treatment . I don't think my doctor knows how to treat me. I have MANY symptoms that need adressed . Got to go get something to eat; Talk at Ya Later....OK   ________________________________ To: Stillsdisease Sent: Thu, January 13, 2011 3:45:45 PM Subject: welcome  Hey tell us more about your self. Statins usually lower cholesterol...some people do have side effects from them though. What is a proangler? I am sorry you have this disease. Are you Ok these days? Where do you live? Liz NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2011 Report Share Posted January 13, 2011 , Welcome to the family! I'm very sorry your Still's is so active and you've not been able to have it managed as well as it should be. Thank goodness for your daughter finding you and you getting some help. I'm nicknamed and one of the moderators so have read your introduction as well and want you to know that this a caring, supportive family here and you can post most any hour day or night and someone is usually around. Glad to get to know you, Smiles, To: Stillsdisease From: proangler56@... Subject: Re: welcome Later....OK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2011 Report Share Posted January 14, 2011 Thank's for the note ; I look foward to learning from this group and also telling my tales, might help someone else. ________________________________ To: Still's group <stillsdisease > Sent: Thu, January 13, 2011 6:41:48 PM Subject: RE: welcome , Welcome to the family! I'm very sorry your Still's is so active and you've not been able to have it managed as well as it should be. Thank goodness for your daughter finding you and you getting some help. I'm nicknamed and one of the moderators so have read your introduction as well and want you to know that this a caring, supportive family here and you can post most any hour day or night and someone is usually around. Glad to get to know you, Smiles, To: Stillsdisease From: proangler56@... Subject: Re: welcome Later....OK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2011 Report Share Posted January 14, 2011 Thank you so much for the e-mail. Good to here you can get out from time to time. I am mostly housebound and live from hour to hour. As I had wrote my doctors said I have a very ,Very bad case of Stills and they have no treatment for me. The steriods I took made me very sick and I took them for 17 months and told my doctor I DO not want to go back on them. Again Thanks Marty for the support and kind words. Yes when we get older age 53 and 57 are just about the same............GARY ________________________________ To: Stillsdisease Sent: Thu, January 13, 2011 10:00:15 PM Subject: Re: welcome    Welcome from another old fart only younger then your self and also an old out door sportsman who now dreams more then he dose. By the way I used to belong to the North American fishing club and the same hunting club also. never got into bass fishing to much but fishing was a love of mine that after a 5 year wait I have now only started to get back into again well if you can say going out maybe 5 or so times a year is getting out. Any way welcome and glad you have made it this far. Like you I had a bad trip at first but not as bad as yours as in health wise but lots of ER trips and ICU time. I hope you find and get the help you need ASAP but there is a secret to it and that is you have to be your own advocate and if you’re not up to it I bet your daughter will step in and help you. Be aggressive and fight for your health and help. Go on line get info and ask to have some of the pamphlets we have sent to you. One thing your lucky about and that is there is more info out there to day then there was even ten years ago when I started my stills life. By the way I am 52 and in June I will be 53 so were not that far apart in age. I also used to hunt all the time from big game to birds and well it went the same way my fishing did only it’s still gone. My fishing was more for trout and walking streams for miles now days if I can walk a mile with rest it’s a good day and that is around town not in the bush. if you want to talk or just need some one to chat with drop me an e mail to my personal e mail address and or send me your number the same way and I will call ya so tell and again glad your here and keep positive as normally the start is the hardest time with this . It may feel like it will never end but down the line most do get some help and relief so they can deal with life a bit easier so that light at the end of the tunnel is not always a train it mostly a better day or that’s what we hope  The  Redneck  Marty G      Excuses are like backsides. Everybody’s got one and they all stink.  A person who demands more gun control legislation is like a chicken who roots for Colonel To learn more about Stills Disease or to make a tax deductible donation:  http://www.stillsdisease.org/stills_info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2011 Report Share Posted January 14, 2011 Thanks for the note. I have always wanted to go to scotland . If I get well I will come see you...OK About you falling, are you having blackouts ? I was in a 5 day blackout up and around in my house faqlling and running into the doors and walls and got all brused up . That was when I almost died. I was out of control for those 5 days so maybe you are having little blackouts. Tagain for you support it means alot. I have had a lot of mail and feel good about this group. Talk at you soon Francesca.............GARY ________________________________ To: Still's Disease <stillsdisease > Sent: Thu, January 13, 2011 11:24:37 PM Subject: RE: welcome  Hello , My name is Francesca. You might be feeling overwhelmed already with emails but I wanted to chime in to say I am a newbie too and this group has already helped me so much. As Liz and said, support is so important and even if you don't post, reading other peoples' experiences often strikes a chord. It gives you information that you might pass on to your doctors too. Someone might mention eyes, or jaw joints, or losing their voice, or swollen glands - all these things that I used to think made me a hypochondriac make sense now. And peoples' medical knowledge - drugs, dosages, side effects - is way more valuable than any pharmaceutical leaflet will ever be! My first rheumatologist didn't recognise this as Still's and so like you, I got in quite a mess over a period of 2 years. With the " right " treatment though, plus the support from this group, my turn around has been remarkable. Compared to where I was, I am a new person. It took 6 months but I am able to live on my own again now, and can drive a car, and my fevers are virtually non-existent. At the same time, this darned thing wrecked my career - I did live in the US but have returned to my native Scotland now - so I really, really empathise with you for not being able to fish...for the moment. Like Marty said, that could well change if you get can on top of your treatment. He is right to tell you to be up front with your doctor, or have your daughter go with you. I'm 34 years old - my chime in is therefore also to say that age doesn't matter in this group either! I don't often have much to contribute as our friends are so very knowledgeable and I feel selfish for always being the one to ask questions. Everyone is so good though and really care about each other. Even just a good old rant when otherwise you would be screaming inside your own head is perfectly ok in this space. So, I have lumbered on for far too long. I am so sorry you have had to join this group in the first place, but I know from my own experience that it has been a major factor in turning my life around. Good luck, . Cheerio for now everyone, - oh, just to do my usual - I'm in a serious " sleep " phase at the moment - fall off my perch with literally moments notice. I'm kind of aware that's somewhat dangerous. I have been doing this about 2 years, but with long-ish periods when it doesn't happen so its emergence rather startles me. Does anyone have any ideas? Thank you... Francesca Scotland, UK. To: Stillsdisease From: stills_stinks@... Date: Thu, 13 Jan 2011 22:00:15 -0800 Subject: Re: welcome Welcome from another old fart only younger then your self and also an old out door sportsman who now dreams more then he dose. . Quote Link to comment Share on other sites More sharing options...
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