Guest guest Posted May 8, 1999 Report Share Posted May 8, 1999 geri and tami, this is so true. tami, i'm glad this has helped you and provided an outlet for your fears and emotions. i was so happy to find this site as well. i was considering the possiblity of an in-person support group, but this would probably mean a hep c group which would have many different issues to confront. my family and boyfriend have been incredible with all of this. i feel that i need to restrict what i say to them, though, because they are much happier when i appear " strong " . i know i would feel the same way as well. i think it's very hard and scary for loved ones. i always feel better when i discuss my feelings, and this provides the opportunity to do this with people who will understand. i also don't need to scare my family as much and, like you said, don't feel so alone. teri, i hope you continue to take comfort here, because you know everyone cares. emily >From: Chollyfam@... >Reply- onelist > onelist >Subject: Re: [ ] philosophy >Date: Sat, 8 May 1999 18:57:11 EDT > >From: Chollyfam@... > >Geri, > >I have to agree with you. I have no one that I am able to talk to about >what >I am experiencing. My husband has made it clear that I am not to > " complain " >to him anymore. This disease has been incredibly frightening for me, and >there are lots of things I haven't ever even thought about having to deal >with that I am having to deal with. It is great to have a shoulder to lean >on and someone to share with. It has been a great lift to me to talk about >my frustrations and to hear from others who are overcoming them. I no >longer >feel alone and I have the belief that I will make it through, just like the >others. I so very much appreciate the time that you and others have taken >to >write to me and to empathize with me and also to lift me back up again. I >don;t want to have to put on a facade or be strong all the time. It is so >wonderful to have a place where I can go " warts and all " and get some >compassion. Thank you Thank you Thank you > >Tami > >------------------------------------------------------------------------ >Attention Star Wars fans! > >ONElist is the best place for your Star Wars list! >------------------------------------------------------------------------ >Please support the American Liver Foundation! > > > >1.) To subscribe send e-mail to -subscribeonelist > >2.) To UNsubscribe send to -unsubscribeonelist > >3.) Digest e-mail format send to -digestonelist > >4.) Normal e-mail format send to -normalonelist Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 1999 Report Share Posted May 8, 1999 Geri, I have to agree with you. I have no one that I am able to talk to about what I am experiencing. My husband has made it clear that I am not to " complain " to him anymore. This disease has been incredibly frightening for me, and there are lots of things I haven't ever even thought about having to deal with that I am having to deal with. It is great to have a shoulder to lean on and someone to share with. It has been a great lift to me to talk about my frustrations and to hear from others who are overcoming them. I no longer feel alone and I have the belief that I will make it through, just like the others. I so very much appreciate the time that you and others have taken to write to me and to empathize with me and also to lift me back up again. I don;t want to have to put on a facade or be strong all the time. It is so wonderful to have a place where I can go " warts and all " and get some compassion. Thank you Thank you Thank you Tami Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 1999 Report Share Posted May 8, 1999 Dear Dianne: Congrats on passing your dissertation and on your new job! That really sounds exciting! What kind of job is it (hope I'm not being too nosy)? It's great to know that people are working and managing despite these debilitating illnesses. I feel bad that I'm such a sloth and don't ever feel like doing much of anything. And I'm in 'remission'! I so admire those of you who manage to go on and keep living such productive lives! It's an inspiration! Kathy (AIH) Seattle area Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 1999 Report Share Posted May 8, 1999 Dear Dianne: Wow! It sounds like quite a move! I don't blame you for being nervous about it. We're planning a vacation next month and that has me a bit worried too. Thanks for the words of encouragement. Lets hear it for breathing! Everyone! In though the nose...out though the mouth....in through the nose...out through the mouth! I'm a pro! I did manage to get my heinie to the grocery store and through several errands today! Hope all you Mothers out there have a great Mother's day!! (Hmmmm. That sounded kind of funny...ummm...all you women with children????...ummm....OH WELL! I mean well!) Kathy (AIH) Seattle area Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 1999 Report Share Posted May 8, 1999 Dianne, Congratulations on the job! That is super. I know what you mean about moving. It is hard to leave what you know, but I hope it is for the best for you! Best of luck! Tami Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 1999 Report Share Posted May 8, 1999 I know it's not always easy to dwell on the positive. I feel pretty lousy physically a lot of the time. From the nearly debilitating fatigue to the joint pain and add in peripheral neuropathy that sets the nerves in my legs, feet and arms on fire. But I choose to live positively as much as I can. I know it helps sometimes to vent frustrations. But it helps me to accentuate the positive. I think of the biblical proverb, as a man thinks in his heart so is he. And I try very hard to think positively. Yes, prednisone has its side effects that are not good, but I think it was Barbara Ann that pointed out, -yes, but it has kept us alive. I'm glad to be alive. I enjoy my family and friends, including friends met through this group. -my friends without faces. I am not writing to flame anyone. None of us need that. teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 1999 Report Share Posted May 8, 1999 teri, It is difficult to think about the positive side of life when you're feeling miserable and and everything going on in the world seems even more negative than what we're dealing with ourselves. My son refused to go to a support group for Lou Gehrig's Disease because he said he didn't want to sit around and listen to everyone feel sorry for themselves. But, he deprived himself of support that might have made a difference in his too short life. In the long run, he allowed himself to become a victim of the same self pity he claimed he couldn't tolerate. I thought that if he could see that others were dealing with even worse problems - usually with exceptional bravery - it would inspire him to fight harder to sustain his own life. That said, it comes to mind that though we may talk about the things that bother us on this forum, that doesn't mean that we don't see beauty and positive things in life. It might be that this is where we come to talk freely about our anger (natural) resentment (inevitable) and anxiety (understandable). Many of us have no place else to go and here is a place where there is almost always understanding and support. If any of us feel stifled about expressing our frustrations and fears, it removes a vital factor that a support group has to offer. Concerns about weight might seem shallow to some, but in our society, we're judged (unfairly) by our appearance. By discussing our frustrations we open the door to discussion so that those who have viable suggestions can share them. Discussions about the negative side effects of our meds are important. There ARE negative side effects and not everyone has been adequately warned. On the other hand, there are some strong positives about corticosteroids that have come to my attention through this group. Patterns emerge when others relate their own experiences. Most important of all, though, is that none of us ever say anything that might hurt or stifle another one of us from talking about what we are experiencing, even if it's not always positive. If we want " light " we can go to an AOL chat room. Here, with a little bit of luck, we'll at least be able to find something to laugh about now and then and even learn to appreciate the fact that there are others who are worse off than we are. But, I suppose that everyone visualizes a different purpose for a support group. This is only my way of seeing the purpose of a gathering of this kind. I'm not religious and I tend to shy away from inspirational themes... not that I have anything against them, but they're just not my type of thing. I do love to laugh and I do see beauty in the world and most of all in people. I hope that I convey that as well as so many others in this group do. Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 1999 Report Share Posted May 8, 1999 I'm glad you're glad! Just to wander off the subject.... I defended my dissertaion last week at passed. Once my dissertation is cleared by the thesis clerk (a yuk bunch of work), I'll have completed my PhD and have student loans to last a lifetime. I also accepted a position in Wisconsin and look forward to moving from Texas in July. I do find it scary, as I'll have to start new medical care, and just like Teri, I deal with her same symptoms. But I refuse to give up and will give this job my very very best. And , you are doing great girl! Work with your body and it will work with you, and listen to your doctors and most of all, ask questions. You are a hope and a promise and I will be cheering for you! Dianne On Sat, 8 May 1999 16:36:03 -0500 teri <teri@...> writes: >From: teri <teri@...> > >I know it's not always easy to dwell on the positive. I feel pretty >lousy physically a lot of the time. From the nearly debilitating >fatigue to the joint pain and add in peripheral neuropathy that sets >the nerves in my legs, feet and arms on fire. But I choose to live >positively as much as I can. I know it helps sometimes to vent >frustrations. But it helps me to accentuate the positive. I think of >the biblical proverb, as a man thinks in his heart so is he. And I try >very hard to think positively. Yes, prednisone has its side effects >that are not good, but I think it was Barbara Ann that pointed out, >-yes, but it has kept us alive. I'm glad to be alive. I enjoy my >family and friends, including friends met through this group. -my >friends without faces. I am not writing to flame anyone. None of us >need that. >teri > > > >------------------------------------------------------------------------ >Get " in synch! " > >With the ONElist Shared Calendar Feature. See homepage. >------------------------------------------------------------------------ >Please support the American Liver Foundation! > > > >1.) To subscribe send e-mail to -subscribeonelist > >2.) To UNsubscribe send to -unsubscribeonelist > >3.) Digest e-mail format send to -digestonelist > >4.) Normal e-mail format send to -normalonelist > ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 1999 Report Share Posted May 8, 1999 I agree Geri-especially when some of us have families that do not understand-or in my case do not even know. Some families can't be supportive. So when you have to pretend you are doing great it is nice to know you can write about any frustrations good or bad in this forum. Great job Geri! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 1999 Report Share Posted May 9, 1999 Kathy, I'll be teaching sociology at a private college. And please don't think of yourself as a sloth!! Everything you do is something and counts!! That's the nice thing about life. Even breathing counts. yeah team! And not to minimalize feeling bad. I'm scared to death of facing moving. Getting through this past month has upset all my levels and it's not been pleasant. But hey, with my student loans, I literally can't afford to give up! My son is coming too and will be starting school. I'm used to Northwest winters having been born in Washington, but when the brochure described winter ice fishing, I suppose I must assume the lake freezes. By the way, I have a friend with Pbs (is that right?) anyway, I know there is a list serve but does anyone have the directions for getting on it? ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 1999 Report Share Posted May 9, 1999 And for all you fathers who must wait a month to be special (just kidding). Yeah for the grocery store. Wisconsin felt like home is there a state in America without a Walmart? I do have a liver biopsy coming up at the end of the month. I wanted my doc here to do it rather than face starting out with a new person. He doesn't miss. Last time he even held it up in the specimen jar and asked me if I wanted to see it. I think he likes doing these. Different strokes for different folks. ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 1999 Report Share Posted May 9, 1999 Hi Diane or soon to be Dr. Diane, Congratulations! It's good to know your hard efforts have paid off. I'll be 95 by the time I'm finished with school (computer science), but it works for me :0) You'll be departing our lovely TX just about the time our temperatures start hitting the 100 mark, isn't that sad :-) I'm in the DFW area. When I read that you'll be moving to Wisconsin, I think I just might be a little jealous. ALL THAT CHEESE! For the most part I'm a lacto-ovo veggie, and I could live on cheese (REAL, not low or no fat) and crackers, but alas, I know better. I wish you the very best of health in your new home, good luck and please get back on line as soon as you're settled. Barbara Ann P.S. I hope nobody writes to me about the 'mucous thing' with cheese, it'll just disgust everyone. -- On Sat, 8 May 1999 17:50:05 Dianne L Sykes wrote: >From: Dianne L Sykes <dlsykes1@...> > >I'm glad you're glad! Just to wander off the subject.... I defended my >dissertaion last week at passed. Once my dissertation is cleared by the >thesis clerk (a yuk bunch of work), I'll have completed my PhD and have >student loans to last a lifetime. I also accepted a position in >Wisconsin and look forward to moving from Texas in July. I do find it >scary, as I'll have to start new medical care, and just like Teri, I deal >with her same symptoms. But I refuse to give up and will give this job >my very very best. And , you are doing great girl! Work with >your body and it will work with you, and listen to your doctors and most >of all, ask questions. You are a hope and a promise and I will be >cheering for you! Dianne > >On Sat, 8 May 1999 16:36:03 -0500 teri <teri@...> writes: >>From: teri <teri@...> >> >>I know it's not always easy to dwell on the positive. I feel pretty >>lousy physically a lot of the time. From the nearly debilitating >>fatigue to the joint pain and add in peripheral neuropathy that sets >>the nerves in my legs, feet and arms on fire. But I choose to live >>positively as much as I can. I know it helps sometimes to vent >>frustrations. But it helps me to accentuate the positive. I think of >>the biblical proverb, as a man thinks in his heart so is he. And I try >>very hard to think positively. Yes, prednisone has its side effects >>that are not good, but I think it was Barbara Ann that pointed out, >>-yes, but it has kept us alive. I'm glad to be alive. I enjoy my >>family and friends, including friends met through this group. -my >>friends without faces. I am not writing to flame anyone. None of us >>need that. >>teri >> >> >> >>------------------------------------------------------------------------ >>Get " in synch! " >> >>With the ONElist Shared Calendar Feature. See homepage. >>------------------------------------------------------------------------ >>Please support the American Liver Foundation! >> >> >> >>1.) To subscribe send e-mail to -subscribeonelist >> >>2.) To UNsubscribe send to -unsubscribeonelist >> >>3.) Digest e-mail format send to -digestonelist >> >>4.) Normal e-mail format send to -normalonelist >> > >___________________________________________________________________ >You don't need to buy Internet access to use free Internet e-mail. >Get completely free e-mail from Juno at http://www.juno.com/getjuno.html >or call Juno at (800) 654-JUNO [654-5866] > >------------------------------------------------------------------------ >Get " in synch! " > >With the ONElist Shared Calendar Feature. See homepage. >------------------------------------------------------------------------ >Please support the American Liver Foundation! > > > >1.) To subscribe send e-mail to -subscribeonelist > >2.) To UNsubscribe send to -unsubscribeonelist > >3.) Digest e-mail format send to -digestonelist > >4.) Normal e-mail format send to -normalonelist > Get your FREE Email at http://mailcity.lycos.com Get your PERSONALIZED START PAGE at http://my.lycos.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 1999 Report Share Posted May 9, 1999 Tami: Too bad we didn't live close to each other so we can compare our warts. I will be getting all of them off in September at the Mayo Clinic because they want to do biopsies (SP) on all of them Sue AIH Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 1999 Report Share Posted May 9, 1999 Dianne: Yes congrads on your degree. But you said that you were moving to Wisconsin just remember to bring alot of winter clothes, boots, snow pants, down filled coat. Wisconsin is beautiful in the summer and very cold in the winter. But the last two winters have been great. Better weather I have ever seen in my 49 years so maybe the cold and snow is something of the past. Ya right. Sue AIH Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 1999 Report Share Posted May 9, 1999 Kathy: Yes this Mother will have a nice Mother's Day....And you know what I mean...... Sometimes things just come out wrong. Sue AIH Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 1999 Report Share Posted May 9, 1999 Tami, My husband is apparently the opposite of yours since he tends to worry a little too much. But, we've been married for a long time so I'll forgive him for that. In 1989 we lived in San and I was working in Santa Cruz during the Loma Prieta earthquake. I drank some contaminated water and became deathly ill from Shigella. I drove home on 101, blacking out off and on and swerving onto the shoulder, fell into bed with diarrhea beyond anything I knew was possible and developed a raging fever. My boss called my husband at work but he didn't come home until the end of the day. By that time, my temp was 105° pushing towards 106°. Incredibly, I was close to dying and in and out of consciousness, but he didn't call a doctor because he didn't want to put me in a position to have my dignity offended (I was a mess). I told him that if I ever got sick like that again, forget about what I look like, just DO SOMETHING! It's tough not to have someone to talk to and to sympathize with you when you feel lousy. With AIH there can be too many days when you just want to lie there and let someone else take care of things and most of all, show that they care. I hope that your husband comes around and begins to understand the potential seriousness of your condition. If he hasn't talked to your doctor, he really should. Can you bring this up to your doctor? One of the many great things about this support group is that no matter how many " warts " we have, there is always someone who has more and everyone is willing to listen. I'm usually around somewhere if you need to talk. My computer automatically alerts me when new e-mail arrives and I can't resist reading it when I hear the little beeps. Kind of like wearing an electronic ankle bracelet only this one is connected to my mind. Do have the best weekend possible. Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 1999 Report Share Posted May 9, 1999 my doc is funny too. I really like him he is socool. >From: KATBERCOO@... >Reply- onelist > onelist >Subject: Re: [ ] philosophy >Date: Sun, 9 May 1999 13:36:54 EDT > >From: KATBERCOO@... > ><<Last time he even held it up in the specimen jar and asked me if I wanted >to see it. >> > >Dear Dianne: > >Your doctor sounds like a riot! Mine has an odd sense of humor sometimes >too. Once during the beginning of my treatment with the prednisone, he >called me up and said, " Guess what! I just found out we're doing >everything >wrong! " > >I was.... " WHAT! " > >Then he said, " Just kidding, things are looking better! " . I could have >kicked him and told him so. > >Again, best of luck with the move! > >Kathy (AIH) >Seattle area > >------------------------------------------------------------------------ >Give back to your community through " Grow to Give. " > >See homepage for details. >------------------------------------------------------------------------ >Please support the American Liver Foundation! > > > >1.) To subscribe send e-mail to -subscribeonelist > >2.) To UNsubscribe send to -unsubscribeonelist > >3.) Digest e-mail format send to -digestonelist > >4.) Normal e-mail format send to -normalonelist _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 1999 Report Share Posted May 9, 1999 <<Last time he even held it up in the specimen jar and asked me if I wanted to see it. >> Dear Dianne: Your doctor sounds like a riot! Mine has an odd sense of humor sometimes too. Once during the beginning of my treatment with the prednisone, he called me up and said, " Guess what! I just found out we're doing everything wrong! " I was.... " WHAT! " Then he said, " Just kidding, things are looking better! " . I could have kicked him and told him so. Again, best of luck with the move! Kathy (AIH) Seattle area Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 1999 Report Share Posted May 9, 1999 Geri: I know that I have always been there for . And this year alone I had to have a meeting with her Algebra teacher. What a dope. I do not know how he ever got the job except he coaches one the boys sports. He had an hour meeting with me in a room with my husband, and her councilor and I would not back off. After told me that he doesn't like fat people...Boy I bet he doesn't like me. He also was being real mean to a girl in her class and I think that it was her religon that bothered him. I take it that he only like jocks. One girl at work has a daugher in his Advance Algebra class and this quarter he gave her an " F " . I would had been right into the school if that was . She is trying so hard and he just won't give her an inch. But said to me, Mom, I have 5 weeks left of school. I will just make the best of it. Sue AIH Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 1999 Report Share Posted May 9, 1999 Dear Susie, Many of us lack family support and understanding about what we're dealing with. Our children have had the most difficult time realizing that I'm not invincible. I've always been so strong, I don't think they can believe that I'm still not immortal and tougher than nails. All of their lives, I've been their archangel, fighting their battles for them, worrying about them, giving them sympathy when they were down, and now they have to face the fact that I may not be as strong as I once was. Fortunately, I have a very large and close extended family and a wonderful relationship with my husband. But despite family, I've found that this support group gives me something that no one else can. A place where I don't have to be strong! Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 1999 Report Share Posted May 13, 1999 Sue, 's Algebra teacher sounds like he needs to be reminded that he isn't in a position to show the kind of biases it sounds like he's showing. If he becomes a problem or does anything that's seriously out of line, I wouldn't hesitate to make a complaint to the School District Office. There are so many excellent and dedicated teachers, but a few like him can make everyone look suspect. With your medical problems and the stress is undoubtedly under, worrying about you, you don't need that kind of unneccesary aggravation. Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 1999 Report Share Posted May 13, 1999 Geri: came home again tonight complaining about the Algebra teacher. With a discussion with her father, the principal of the school will be getting a call from him tomorrow. Ron knows him so he probably will have alot to say to him. I know that school is almost out but the guy just don't understand as parents what we want. We want him to just back off and leave her alone. I know there are papers I could file against him but I think my husband will take care of him. Sue AIH Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Do you still have that book? Which is it? I didn't realize, in fact I thought I had read the opposite, that remissions were good. That has definitely been my pattern, and each worse. But I have a hard time even saying it was one illness with bad times and remissions, because each time was so different and the symptoms were so caused by secondary infections. CMV the first time. Then Epstein Barr. Then Mycoplasma & Mercury. Of course I could be wrong about all those. Maybe those things didn't cause symptoms at all, they just happened to be coincidence with different phases. Thanks, Doris ----- Original Message ----- From: " Beedle " <cathy@...> He had the sudden severe > onset, the slow ascent and the one that comes then has full remissions then > comes again a bit worse, then one or more full remissions before going full > blown and continuing on an uphill (meaning more symptoms) course. He said in > that book that the one with remissions is the most likely one not to go > away. That hit me hard, because that was my onset. I still believed I could > beat this DD somehow and my type A personality told me to fight it. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 Doris, I think I have the book somewhere. I'll search it out. hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 A long time ago, there was an Emperor who told his horseman that if he could ride on his horse and cover as much land area as he likes, then the Emperor would give him the area of land he has covered. Sure enough, the horseman quickly jumped onto his horse and rode as fast as possible to cover as much land area as he could. He kept on riding and riding, whipping the horse to go as fast as possible. When he was hungry or tired, he did not stop because he wanted to cover as much area as possible. Came to a point when he had covered a substantial area and he was exhausted and was dying. Then he asked himself, "Why did I push myself so hard to cover so much land area? Now I am dying and I only need a very small area to bury myself." The above story is similar with the journey of our Life. We push very hard everyday to make more money, to gain power and recognition. We neglect our health , time with our family and to appreciate the surrounding beauty and the hobbies we love. One day when we look back , we will realize that we don't really need that much, but then we cannot turn back time for what we have missed. Life is not about making money, acquiring power or recognition . Life is definitely not about work! Work is only necessary to keep us living so as to enjoy the beauty and pleasures of life. Life is a balance of Work and Play, Family and Personal time . You have to decide how you want to balance your Life. Define your priorities, realize what you are able to compromise but always let some of your decisions be based on your instincts. Happiness is the meaning and the purpose of Life, the whole aim of human existence. So, take it easy, do what you want to do and appreciate nature. Life is fragile , Life is short. Do not take Life for granted. Live a balanced lifestyle and enjoy Life! Watch your thoughts ; they become words. Watch your words ; they become actions. Watch your actions ; they become habits. Watch your habits; they become character . Watch your character; it becomes your destiny . Quote Link to comment Share on other sites More sharing options...
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