Guest guest Posted January 30, 2000 Report Share Posted January 30, 2000 L. I'm hope you are able to get feeling better really fast. Call your eye doc right away and demand they get you in. If vision gets worse, may consider taking pred just in case. Vision goes real quick with this stuff and can be permanent. Mention temporal arteritits to the receptionist and have her ask the doctor. Bet they'll get you in quick. Doesn't matter what you have if it gets you in quick. If they still don't get you in then ask for the nurse or technician. Explain our disease and that we can go blind quick. If all else fails, tell them you are documenting that you need help and that they are refusing to see you and ask for their first and last name. Bet you will get in within hours. Hate to sound so nasty, but don't play with this one. , have you tried Oxycotin for pain? It's a pill form and the other has had it before and it really does help. I know alot of people who have severe pain and can still function on it. The other can probably help you out with more info. Hang in there we'll all be praying for you. Have a good time with your son. It's good to hear from you, just wish you felt better. Take care, Lund wrote: > > > Hi Llund here. Sorry for being such a bad list person but > fighting > such a battle with pain and exhaustion I have a hard time just keeping > up > reading the mail. My eyes are sooo bad right now Everything is very > blurry > Have an appointment with the eye specialist next week Hope he can > help. But > its seems like they get one thing fixed 2 more things break. Welcome > all new > comers to the list it has brought me through some really bad times. As > for a > symbol for R P how about a Koala Bear It is a rare little bear and > with a > tear it may be pretty effective. And men and women could relate. Sue I > wish > you the best of luck at Mayo. You and have been thru some really > rcky > times family wise, This too will pass, hopfully for the better. You > are both > in my prayers as many years ago I went through the same thing. But it > did > pass and my came into my life. Poor denise I wish there was some > way > to help her through . Angie you are sounding better then the last time > I > posted, sounds like you and had a good time. Barb I'm sorry I > haven't > kept in touch When I feel more human I'll give you a call. Am going to > a > pain guy on the fourteenth to see if he can help me and hopefully the > Post > office will decide what they are going to do with me The Post office > doc > called my rheumy and was so offensive that she hung up on him. > I have pain everywhere and has been so difficult to go to work > everyday. But > you do what you have to do. When I can't take it anymore then I have > to go > in for pain shots that put me out for a day or so. > My son just called he and his girlfriend are on their way here from > Fargo so > I have to quit will try to stay in touch more. Take care all of you > you are > never out of my thoughts Love Lund > ______________________________________________________ > Get Your Private, Free Email at http://www.hotmail.com > > ----------------------------------------------------------------------- > [ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2000 Report Share Posted January 30, 2000 L. I'm hope you are able to get feeling better really fast. Call your eye doc right away and demand they get you in. If vision gets worse, may consider taking pred just in case. Vision goes real quick with this stuff and can be permanent. Mention temporal arteritits to the receptionist and have her ask the doctor. Bet they'll get you in quick. Doesn't matter what you have if it gets you in quick. If they still don't get you in then ask for the nurse or technician. Explain our disease and that we can go blind quick. If all else fails, tell them you are documenting that you need help and that they are refusing to see you and ask for their first and last name. Bet you will get in within hours. Hate to sound so nasty, but don't play with this one. , have you tried Oxycotin for pain? It's a pill form and the other has had it before and it really does help. I know alot of people who have severe pain and can still function on it. The other can probably help you out with more info. Hang in there we'll all be praying for you. Have a good time with your son. It's good to hear from you, just wish you felt better. Take care, Lund wrote: > > > Hi Llund here. Sorry for being such a bad list person but > fighting > such a battle with pain and exhaustion I have a hard time just keeping > up > reading the mail. My eyes are sooo bad right now Everything is very > blurry > Have an appointment with the eye specialist next week Hope he can > help. But > its seems like they get one thing fixed 2 more things break. Welcome > all new > comers to the list it has brought me through some really bad times. As > for a > symbol for R P how about a Koala Bear It is a rare little bear and > with a > tear it may be pretty effective. And men and women could relate. Sue I > wish > you the best of luck at Mayo. You and have been thru some really > rcky > times family wise, This too will pass, hopfully for the better. You > are both > in my prayers as many years ago I went through the same thing. But it > did > pass and my came into my life. Poor denise I wish there was some > way > to help her through . Angie you are sounding better then the last time > I > posted, sounds like you and had a good time. Barb I'm sorry I > haven't > kept in touch When I feel more human I'll give you a call. Am going to > a > pain guy on the fourteenth to see if he can help me and hopefully the > Post > office will decide what they are going to do with me The Post office > doc > called my rheumy and was so offensive that she hung up on him. > I have pain everywhere and has been so difficult to go to work > everyday. But > you do what you have to do. When I can't take it anymore then I have > to go > in for pain shots that put me out for a day or so. > My son just called he and his girlfriend are on their way here from > Fargo so > I have to quit will try to stay in touch more. Take care all of you > you are > never out of my thoughts Love Lund > ______________________________________________________ > Get Your Private, Free Email at http://www.hotmail.com > > ----------------------------------------------------------------------- > [ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2000 Report Share Posted January 30, 2000 L so sorry to hear about the pain you are feeling, that stinks! I hope this pain doc helps youout. you deserve it. and a rest from th pain. I hate it that our regular docs feel their hands are tied when it comes to treating the pain. maybe you will have better luck with the specialist. I hope you enjoy your son and his girlfriend just don;t over do it. we are thinking of you. Love and Gentle Hugs, Angie Yesterday will fade and tomorrow will take care of itself. Lord, help me today http://www.geocities.com/acenneno_1999 http://rpolychondritis.tripod.com/index.html http://disabilities-us.com/shad/ You don't stop laughing because you grow old, you grow old because you stopped laughing. To 's Friends: Just click on the link below, and sign up for an account at X.com. It takes less than two minutes, and we'll put $20 cash into your account to get you started. What do you get? * FREE $20 cash deposited in your checking account * FREE money transfers (send money instantly to anyone's email) * No obligation, no minimum balance, no monthly fees * Super-high interest on any money in your checking account * FREE starter checks, and a FREE VISA debit card. * plus, a whole lot more! So click on this link right now, and come get your $20! https://www.x.com/new_account.asp?Referrer=angiecatw1aol ********************************************************************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 karen, so sorry yo are having o much pain. i hope the new ain docwill ofer some relief. m prayers are wit you. love denise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 karen, hi again i sure wul like to call you occasioally. fr hat mater i would like the phone nmbers of anone tt wishes to give them tome . it sure helps to talk ear to ear ometmes. tanks again denise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 i also take oxycotin fr pain. 160 mg, 3 times a day. and when i need a booster fo breakthrough pain i take oxir (wich ia fast acting oxycotin). ifi didi not take these mds i could no get out o edin te morning. and boy do i ever pay fr it if i foget to take the next dose and the pain mdswear off. remembe ---it is alo easier to keep panUNDER control than to get it UNDER control--a least i ae found that to be true. tere are tmes when i orget what time i take it in e middlw of he night s i havestarted wrinin gthe time down. prior to ese mds., i was wheelchair and bedbownd. loe, denis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 Thanks Liz and all for asking and praying for my dad. He's still in there (hospital). They took out his catheter today and now he can't go on his own, so ............as soon as he pees, he can come home. Geez, I can't believe I'm sitting here writing about my father's potty habits, or lack there of, but the nurses on the group understand what I mean anyway. Just keep the prayers flowing please, he still needs them. >>>>>>>>>>>>>>>>>>>> Hello everyone, Gail thank you for all the entertainment, I'm sorry Cyrus is having such a hard time, you are both in my prayers. Thanks Angie, Sue and , sometimes my job sounds a little more " glamorous " than it actually is, although I do love it! Sue I hope and pray your Dad is doing better. I think the moon and beacon sounds quite good, could the letters RP be incorporated somehow? As it is rare we need to get the connection into people's minds.I think Montel might be the most sympathetic as he suffers from ms and must know about some of the problems, MS is autoimmune, isn't it? Hope everyone has a good day, love Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2000 Report Share Posted February 1, 2000 In a message dated 01/31/2000 11:25:02 PM Central Standard Time, dkowalec@... writes: << Just 2 sloty worth from the POLISH PAUPER. What about ........... a PHOENIX for a logo. We just keep coming back ........... >> LOL Dan! Hey some of ours just never leave....LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2000 Report Share Posted February 1, 2000 In a message dated 01/31/2000 7:43:11 PM Central Standard Time, susuw@... writes: << Geez, I can't believe I'm sitting here writing about my father's potty habits, or lack there of, but the nurses on the group understand what I mean anyway. Just keep the prayers flowing please, he still needs them. >> LOL Oh , Tell him to drink, drink, drink...{ lots of water } Let us know how he does.... Love you Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2000 Report Share Posted February 1, 2000 its funny dan-----i was just thinking aout a phoenix last night!!!!!! during the lat two hospitalizationws my doctors did no expec i would make it. andcall it amiracle tha i did. sound like a god symbol. sincerely denie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2000 Report Share Posted February 16, 2000 Dear L I am glad your new pain doc is making a plan of action for you. It is about time you can look forward to some good help. Do not ever apologize for taking care of yourself. that is the most important thing you can do for yourself and the group. When you are up to writing you write and we understand. Congrats on the upcoming wedding. that is terrific. How old is your son? Love and Gentle Hugs, Angie Yesterday will fade and tomorrow will take care of itself. Lord, help me today http://www.geocities.com/acenneno_1999 http://rpolychondritis.tripod.com/index.html http://disabilities-us.com/shad/ You don't stop laughing because you grow old, you grow old because you stopped laughing. Just click on the link below, and sign up for an account at X.com. It takes less than two minutes, and we'll put $20 cash into your account to get you started. So click on this link right now, and come get your $20! https://www.x.com/new_account.asp?Referrer=angiecatw1aol ********************************************************************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2000 Report Share Posted March 2, 2000 In a message dated 03/02/2000 1:45:33 PM Central Standard Time, kllund@... writes: << Please Keep me in your prayers for a few days Take care all of you Love and Hugs Lund >> all of you are in my prayers always. I hope you get to feeling much better. Love Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2000 Report Share Posted March 2, 2000 Iam so sorry to hear that you are having o many problems. I hope fr your sakethat itis he meds. something isdefinetely going on. I get ired sometimes tol I don't think itis a pity pot, I think it s true frustration anger at the fact that we have to deal ith this disease. and that is only human to feel tis wa sometimes and that is OK. Give yourself permission to be human. It is ok to be fed up. hang in thre, tough. will keep you in my prayers. ifthere is anything i can do, or if you wan to clal please do. love denise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2000 Report Share Posted March 2, 2000 : So sorry to hear of your difficulties. This disease sure is horrid at times huh. I had problems with using my hands when I had severe case of Reynaud's. Alot of weakness and numbness. Not sure if your experiencing anything like that. Hope they have luck finding out what is going on. My prayers are with you throughout the day!! Take care, Hi Lund here I went to my pain management Dr and he's asking for your help. Has anyone on the list that is taking Neouronton had symptoms like this ' While standing everything falls out of your hands your knees buckle and you almost go out but are able to catch yourself. They are running every test in the book to rule out everything but need to know this as it very well could have something to do with the way we are taking it for pain and how our systems handle it' and as you know there just aren't alot of people for him to draw from. He's calling me Friday Thats next Friday to get the results of the brain scan to me and would like to have as much imput as possible. Get this guys he actually said you people know much more about this disease then we do there just isn't enough of you to get a good study. Well I told him our list is growing by the minute and we need to get answers and if it takes answering A MILLION QUESTIONS FROM ANYONE THEN THATS WHAT WE NEED TO DO. I'm in so darn much pain all the time and you get one thing so its tolerable and another thing goes nuts then you get these idiots in the E R that don't know dittly and when you try to explain anything they act like you are a nut case. GOD I HATE THIS DISEASE. Please help me by answering the question I asked as many as possible . Thanks Please everyone have a painless week for a change Take care andhugs Lund ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Conditions A to Z: Drug Database: Vitamins & Minerals: Alternative Practices: Herbal Index: Allergy Index: Ask Our Experts: In-Depth reports: hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2000 Report Share Posted March 3, 2000 Sorry you are having such a bad time. Our prayers are with you. and Brett. Please Keep me in your prayers for a few days Take care >all of you Love and Hugs Lund >______________________________________________________ >Get Your Private, Free Email at http://www.hotmail.com > > >------------------------------------------------------------------------ >PERFORM CPR ON YOUR APR! >Get a NextCard Visa, in 30 seconds! Get rates as low as >0.0% Intro or 9.9% Fixed APR and no hidden fees. >Apply NOW! >http://click./1/2121/0/_/32049/_/952024901/ >------------------------------------------------------------------------ > >hi and welcome. maybe we can come up with answers that our doctors can't > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2000 Report Share Posted March 3, 2000 , I donot take the drug you mentioned, but i dohave the dropsies (of m hands). My meurologist recently put me on depcote for headaches and so fr is it like a miracle come true. really wiped them out. Previous i had been on many drugs for headaches, ie fioricet, sumatrix, imitrix, midran thlenol 2,3,4. depacote is an anti-seizure med. My friend whois epileptic takethis drug. tehy did the mri's of the spine and head too. they were looking for a syrinx, but fortunately didnot find one. however they dd find how nasty adn deformed and scared sclerosed my back is. I know there are some people in this groupwho are on the drug you mentioned. and my neurogist said if the depacot didinot work, we would try it. It is so refreshing to hear that a doctor realizs that we hwhohave this disease are a great source of knowledgeable. He is certainlywilling to listen. love denise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2000 Report Share Posted March 5, 2000 Dear KAren Lund know you are in my prayers daily as is everyone here. I know exactly what you mean about being tired of it. love, hugs and hope Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2000 Report Share Posted March 5, 2000 Dear KAren L I have never had the medicine you mentioned sorry no answers here love, hugs and hope Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2000 Report Share Posted March 5, 2000 L happy anniversary in case I forget which I probably will do and enjot the trip. wish could sneak into your luggage just to get away love, hugs and hope Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2000 Report Share Posted March 15, 2000 Hi , You mentioned headaches on this post. I have just started to get them the past two months. I've NEVER had them like this before! The top of my head feels like it's going to blow off!!! It doesn't matter what I take the only thing that helps is to literally throw up and then THAT reaks havoc with my ribs! I've got a raging headache right now and trying to decide whether I should stay here at work or go home. It started yesterday in my left eye and now the eye is half swollen shut, running and the darn headache! YOUCH! I'm rambling again, anyway I was wondering is this part of RP? My sister says it migrane but I've never had these before. Anybody else got suggestions as to the cause? Nancie --- dlbmo@... wrote: > , > I donot take the drug you mentioned, but i dohave > the dropsies (of m > hands). > My meurologist recently put me on depcote for > headaches and so fr is it > like a miracle come true. really wiped them out. > Previous i had been > on many drugs for headaches, ie fioricet, sumatrix, > imitrix, midran > thlenol 2,3,4. depacote is an anti-seizure med. My > friend whois > epileptic takethis drug. tehy did the mri's of the > spine and head too. > they were looking for a syrinx, but fortunately > didnot find one. > however they dd find how nasty adn deformed and > scared sclerosed my back > is. I know there are some people in this groupwho > are on the drug you > mentioned. and my neurogist said if the depacot > didinot work, we would > try it. It is so refreshing to hear that a doctor > realizs that we > hwhohave this disease are a great source of > knowledgeable. He is > certainlywilling to listen. > love > denise > > ===== " A real friend is one who walks in when the rest of the world walks out. " __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2000 Report Share Posted March 15, 2000 Sounds like the RP headaches I get from time to time: Eye closes, face squeezes, and at worst vomiting. I have had great luck taking, oddly enough, Salagen tablets. At the first sign of the headache I take 2. Salagen promotes salivation and is not a pain pill and relatively benign. It appears that my salivary glands were affected as in Sjogrens: dry mouth. The promotion of the slaiva seems to stop the headaches. There are substantial facial nerves running through the glands and perhaps the Salagen relieves some pressure there. Re: (unknown) Hi , You mentioned headaches on this post. I have just started to get them the past two months. I've NEVER had them like this before! The top of my head feels like it's going to blow off!!! It doesn't matter what I take the only thing that helps is to literally throw up and then THAT reaks havoc with my ribs! I've got a raging headache right now and trying to decide whether I should stay here at work or go home. It started yesterday in my left eye and now the eye is half swollen shut, running and the darn headache! YOUCH! I'm rambling again, anyway I was wondering is this part of RP? My sister says it migrane but I've never had these before. Anybody else got suggestions as to the cause? Nancie --- dlbmo@... wrote: > , > I donot take the drug you mentioned, but i dohave > the dropsies (of m > hands). > My meurologist recently put me on depcote for > headaches and so fr is it > like a miracle come true. really wiped them out. > Previous i had been > on many drugs for headaches, ie fioricet, sumatrix, > imitrix, midran > thlenol 2,3,4. depacote is an anti-seizure med. My > friend whois > epileptic takethis drug. tehy did the mri's of the > spine and head too. > they were looking for a syrinx, but fortunately > didnot find one. > however they dd find how nasty adn deformed and > scared sclerosed my back > is. I know there are some people in this groupwho > are on the drug you > mentioned. and my neurogist said if the depacot > didinot work, we would > try it. It is so refreshing to hear that a doctor > realizs that we > hwhohave this disease are a great source of > knowledgeable. He is > certainlywilling to listen. > love > denise > > ===== " A real friend is one who walks in when the rest of the world walks out. " __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2000 Report Share Posted March 16, 2000 Dear Nancie, Iam sosorry youarehaving hose terribleheadahes. You know Ihad tem long before i waw diagnod ithrp and midran usuallyhelped, orsumatrix, imitrix. The shotform worked wonderfully. however. you talkabutthe headahes being different. i guessfor youandanyone else, if you start to noice a difference in your heaaches pleae TELL YOU DOCTOR WITOUT DELAY Innotemphasis this enough. Headaches can mean a lot of hings. I had to go through a lot of meds and docs before i founda neurologitto help me fin d the med that worked. I too gotheadache on the topof my head. my husband used to smile with me (lovinglyof coure) when i would ut my hands on the to ofmy head and sh down hard. Iknowit is sillybut i w trying to push thehadache down or awyor somehing. I also have had tem across my temples for toe i make ahot moist towel 9wet adn wring out a kitchen towel and hen microwve it for about 2 minutes, take it out --be careful it will be hot and wrapit in a dry kitchne towel and then put it gentlyon my face. it ould seem to help those kind of headaches. sometimes midran works. fiorcet cn work but it can be addictive. since i sarted the depacote -now on three times a dy (250 mg) it reallyhas cut them down. i may stil wake up with one but it goies awy in about an hour and then i am usually not troubled with them the rest of the dya. to keep thesinus headaces at bayI am on continual meds for snuses--flonase, allegra an usully an antibiotic becauw theyare usually infected. I also rinse my sinuse with a mixture of wter, slt an baking soda on a dailybasis. I hopethis helps. UYes the brain does have connectie tissue so it could be he rp, regardless of whyi juwt d not want to have them. Iso i sue what workws. But again i want to emphasis, for anyone, if yoi notice a change in the patterns of yourheadaches pleawe tell your doctor. love and hugs denise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2000 Report Share Posted March 16, 2000 Hi , Thanks for the suggestions. I will talk to my doc the next time I see him as I am on such strong pain killers (more than one) I should be able to cut off my arm and not feel it! Nancie --- dlbmo@... wrote: > Dear Nancie, > Iam sosorry youarehaving hose terribleheadahes. You > know Ihad tem long > before i waw diagnod ithrp and midran usuallyhelped, > orsumatrix, > imitrix. The shotform worked wonderfully. however. > you talkabutthe > headahes being different. i guessfor youandanyone > else, if you start to > noice a difference in your heaaches pleae TELL YOU > DOCTOR WITOUT DELAY > Innotemphasis this enough. Headaches can mean a lot > of hings. I had to > go through a lot of meds and docs before i founda > neurologitto help me > fin d the med that worked. I too gotheadache on the > topof my head. my > husband used to smile with me (lovinglyof coure) > when i would ut my > hands on the to ofmy head and sh down hard. Iknowit > is sillybut i w > trying to push thehadache down or awyor somehing. I > also have had tem > across my temples for toe i make ahot moist towel > 9wet adn wring out a > kitchen towel and hen microwve it for about 2 > minutes, take it out --be > careful it will be hot and wrapit in a dry kitchne > towel and then put it > gentlyon my face. it ould seem to help those kind of > headaches. > sometimes midran works. fiorcet cn work but it can > be addictive. since > i sarted the depacote -now on three times a dy (250 > mg) it reallyhas > cut them down. i may stil wake up with one but it > goies awy in about an > hour and then i am usually not troubled with them > the rest of the dya. > to keep thesinus headaces at bayI am on continual > meds for > snuses--flonase, allegra an usully an antibiotic > becauw theyare usually > infected. I also rinse my sinuse with a mixture of > wter, slt an baking > soda on a dailybasis. I hopethis helps. UYes the > brain does have > connectie tissue so it could be he rp, regardless of > whyi juwt d not > want to have them. Iso i sue what workws. But > again i want to > emphasis, for anyone, if yoi notice a change in the > patterns of > yourheadaches pleawe tell your doctor. > love and hugs > denise > > ===== " A real friend is one who walks in when the rest of the world walks out. " __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 In a message dated 10/13/00 7:38:21 PM Central Daylight Time, KebaJ@... writes: << perdiem every night and day for my constipation. >> me too keba. sometimes it doesn't work too well and other times it is fine. deb s. (ark) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 In a message dated 10/13/00 7:38:09 PM Central Daylight Time, KebaJ@... writes: << Hey diane I am in tennessee also. Living in cookeville right now I am from Lebanon though. I take duclox and perdiem every night and day for my constipation. With all the pain drugs I am on though they don't do too much unless I eat some really really greasy food. Hope that everyone has a pain free day... >> Keba, You are my next state neighbor. I live in North Alabama. My step-father's old endocrinologist, Dr. Tokurak, is now in Cookeville, TN. My mom and stepdad really sing his praises. My stepfather was very ill for a long time. He went to many doctors before seeing Dr. Tokurak. Dr. Tokurak diagnosed him with empty sella syndrome (a condition where the pituitary gland is basically dead or dying). My mom says he saved my stepdad's life. Anyway, if you ever need to see an endo, he supposed to be great. Quote Link to comment Share on other sites More sharing options...
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