just need some overall support (long)
#257447 - 04/10/06 04:21 PM
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taroh73
Reged: 12/28/04
Posts: 184
Loc: chicago, il
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UGH! Do any of you feel like living w/IBS is like living with a puzzle that requires you to re-solve EVERYDAY! I just feel like I hit my head against a brickwall no matter what. Doing it alone with this illness makes life feel nearly impossible. I'm 33, single, very well educated and attractive, but my life seems to have turned to a pile b/c of IBS. Mostly, the fatigue I feel keeps me from a social life.... so I remain alone because it's sooo rare that I have the energy to go out and meet men. I'm so tired of friends not understanding.. and even when they do I swear they still don't REALLY get the gravity of the symptoms. I lost my career track b/c of this illness.... I can BARELY make it through a 40 hour work week at a retard job... but it's the only job I can hold down because there is no stress, and I can call in and not be missed. It's a catch 22... I'm stuck alone b/c I never get out to meet anyone, and I'm scared to death to be alone b/c doing it all.. figuring it out, paying the bills, and trying to work is almost too much sometimes. I am getting ready to try to go back to school to get teacher certified b/c I figure I will at least have long vacations to deal w/the IBS. But Idon't know how in the world I will manage to work and go to school with no help from anyone. Does anyone else feel this way??? How do the rest of you who do it ALL alone cope?
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Sometimes it gets to me, but I try to keep a positive attitude, and prayer helps too.
Is the diet working for you, and have you tried the hypnotherapy for the stress? What kind of job do you have now? It might not be as bad as you think.
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The diet definitely helps... but it is a catch 22 as well because I used to eat an amazingly healthy diet, and because my tummy is sooo sensitive, I am forced to go heavy on the sugar and white flour. So, I gained 12 pounnds in a year since finding the boards(i'm 5 foot 4). It's particularly emotionally painful for me b/c I was a chubby kid and got teased a lot... I worked very hard in my adult life to stay healhty and get in shape- which I did- but thought I was DYING because my IBS-C, and bloat were so debilitating. It just feels like anything that helps also hurts. I work in a call center right now... and i don't mean to demean them, but the one I work in is particularly trashy and low class. I have a masters degree in English & used to teach at a few colleges... I picked up and moved to a warmer state 6 years ago because I couldn't bear having layers of clothes on my body during Chicago winters b/c my bloat was sooo severe. Once I moved I just couldn't take on any jobs that demanded anything of me & I couldn't get a job at the colleges that paid enough to live- honestly. Then my IBS just spiraled out of control and I've been stuck ever since. I'm finally moving back home to Chi... just scary trying to figure out how to negotiate my life and care for IBS. I try to explain to people that it is sort of like having a screaming baby that you can NEVER put down. EVERY decision I make is predicated on my gut. Does anyone else feel like that?
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I'm an IBS-A and sometimes I feel like a yo-yo! I can't offer too much advice on IBS-c and bloating, but the fennel tea is pretty good. Perhaps others who are C can help out more. Have you tried other Soluble Fibre that does not contain white flour or sugar? People on Low glycemic diets have done this diet and have had some success. Have you been exercising regularly at a gym or at home? It helps a lot with the IBS.
From what you have said in your posts, it seems like stress is a major issue for you. Perhaps the hypnotherapy can help you out in that area. Another thing I want to add is that although I do watch what I eat and I'm careful of triggers, I don't obsess over what I eat. When I used to do that, it would stress me out even more and cause my IBS to be worse. Probiotics also helped me out a lot. Have you tried taking any yet?
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I feel just like you!!! Seriously, it stinks doesn't it? I thought I was the only one on these boards who felt this way.
I'm alone too...no family, really..nor a boyfriend or many friends thanks to the isolation of the IBS pain. I just don't have it in me to go out when I'm in pain. It's a lonely way to live, isn't it? 
How do I do it? I don't. I have prayed really hard asking God to take me up to heaven, where I'll be healed and without pain and not alone. He doesn't seem to want to take me, though.
I also work at a job I am way overqualified for and that doesn't pay enough to live on. I struggle with finances big time! But the job is low stress...so I stay there. I can barely make it through the week and I don't even have to work very hard. Some days, I just show up and try to get through the day...without even doing much work. 
I have thought about moving to Arizona too! From Chicago. Why are you moving back? What area are you going to move to?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Oh...
#257479 - 04/10/06 06:55 PM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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I also want to go back to school...but don't know how I'd handle the stress of trying to pay for it and the stress of working while going to school. I'm not good with stress...but I need to go back to school for something that is will get me a decent job.
I would think that teaching would be a very stressful job, though. I could never do it! Plus, it's hard to be able to use the bathroom when the "urge" hitss. 
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Hi there. Unfortunately I know exactly what you mean. I had a 'temper tantrum' just last night about the whole life-revolving-round-my-stomach issuee. I'm lucky enough to have a wonderful bf who helps so much, but we got together whilst I was going through the early stages of having USPs (Unidentified Stomach Problems), so it does show you can still meet people while suffering with it. On one of our earliest dates I had one of my 'accidents', and he was great! He actually found it really funny, and helped me deal with it so much.
However, yes, sometimes I feel at the end of my tether with it - everything just feels so hard. I'm having car problems at the minute, which isn't a major problem as I don't go anywhere right now, but I start my weekly hypnotherapy sessions in May that require a 45 minute trip to a nearby city over a treacherous road - and anxiety about that is already causing me problems!
On that note, have you tried gut-directed hypnotherapy? I start it in-person in May, but lots of people have had major success with the Audio100 program.
Big hugs for feeling so pants!
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http://ibsblondie13.blogspot.com/
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Good Lord, don't become a teacher! I'm a high school teacher and really trying to find a way out. The stress of my job is why I am where I am....sick and sore. Unfortunately, my husband and I have two kids and are getting ready to buy a bigger house because we're going to "expand" the family so...I have to work. I'm going to give myself one more full year and I'm going to see what else I can do.
As much as everyone envies the summers of teachers, I don't feel like the stress is worth it. I know, I know...I shouldn't complain because I have all that time off but honestly, I spend at least 1/2 of it at school preparing for the next year, getting organized, or taking care of required school business. Another thing you may want to think about it the amount of work you have to take home. As a teacher, once you get home, your job is not done. If I'm not correcting papers, calculating grades, creating quizzes, or lesson plans, then I'm thinking about the stresses at school. It follows me everywhere. I also have to spend time taking classes to keep my certification (my school doesn't reimburse) and have a bazillion meetings thanks to all the crap being handed down from the state (Michigan). OMIGOSH!
If you're totally set on being a teacher because you just love kids to death, then do it. If you're doing what you really love, you're less likely to suffer from stress. But a lot of people have no idea just how much work and pressure we deal with.
13 years and I'm trying to find a way out...
Ugh, there goes my tummy.
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Flipada - IBS-C "It's a gas, gas, gas"
**Lauren**
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I'm concerned that you want to die. How many doctors have you seen about your IBS? I remember you talking to Bob about seeing his doctor. Did anything come of that?
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I have spent my life w/ IBS and I struggle with how much it takes me away from time with my 14 year-old son & husband. It's funny but even having those people in my life, I feel guilty that I spend 90% of my time sick, or in bed, or on the toilet, or talking about my IBS. The guilt of having people who care about you, yet who are neglected, is really hard to deal with. They never pressure me or make me feel badly for my condition at all; I can do that to myself.
I wanted to chime in because I am a high school teacher--during a particular "rotation" of a day I teach five classes in a row & help kids @ lunch. That runs STRAIGHT through from 8:45-2:30 without any break longer than two minute intervals. Other days, I have had three classes back to back. I have had to leave a class to deal with my D; I have had to wait patiently in the hall and PRAY that someone would just walk down the hall to "cover" a class. There is not a private bathroom to use--in fact, there are only TWO womens' faculty bathrooms in use (a total of 4 stalls for 50+ gals). It's been a nightmare. Because of my flares I have missed so much work that if I were not tenured, I would have been fired. Last month my paycheck was cut $800 for missed work because of my illness--I bypassed my allowed sick days long ago.
There are some benefits to the teaching definitely, but there is NO PLACE to hide when you don't feel well. The kids are demanding and you are always "on"--you can't sit @ a desk and have the kids work silently (at least not in my school). It's really stressful. I have thought of quitting so many times.
Your feelings and thoughts echoed mine in so many ways--I just wanted to tell you that you are NOT alone...there are so many people who know exactly what you are saying and how you are feeling. Too bad we can't all have an IBS commune (complete with private bathrooms for everyone!) 
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......................
IBS-D!
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Maybe because of the fact I have other, life-threatening, diseases, the IBS isn't such a huge issue for me and I'm able to just go with the flow more(no pun intended!). Although my IBS can get severe at times, it just doesn't bother me like it does you and others I've read on these boards today (I'm a newbie).
I HAVE felt what you are feeling, the despair and loneliness, but not from IBS. I have felt with IBS that people just don't understand always. I still remember a trip I took with 2 women who were my best friends and I had an attack on the road, they stopped 3 or 4 times on a 2 hr trip and finally, about an hour away from home, my friend who was driving said "I am NOT stopping again, so this better be it!" When I was in the bathroom, I prayed God would keep it from happening until I got home and it worked...as soon as I walked in the door I broke off running and just made in the nick of time. My family is understanding about it. I also have an overactive bladder and they would always tease me about how often I used the bathroom when we went somewhere to eat (at least twice!) and it's extremely rare not to have to use the bathroom at LEAST once every 45 minutes or so. But even though they tease me, they don't cut me down for having the problems I do b/c there is nothing I can do about it. However, I have 1 major medical issue that, although it's not life threatening in the sense of cancer or heart disease, it's still life threatening and I've gotten so depressed over that that I contemplated suicide. Now I look back on it and even though I wish I didn't have it, I realized that I was stuck with it, for better or for worse, and needed to learn to accept it. I ended up turning to my writing talent and wrote a poem about it and now when I look back, I can see that it's really taught me things, shaped who I am, and if I could go back and make it so I didn't have it, I wouldn't change anything. If I didn't have all my medical problems, I wouldn't be who I am now and I know the person I am now would HATE who I would have been.
What I've learned with all my diseases and disorders is that even though I may be lonely, no boyfrined (too much medical baggage), I need to learn to depend on myself, but when I find those rare jewels of friends who are supportive, I keep them close and am a good friend to them in return. Maybe for now your support can come from these boards until you find a friend in person who is supportive. Believe me, they are out there, we just have to find them. Of course if someone told me that last year, I would have thought they were crazy!
2 things to keep in mind: 1st, laughter really IS the best medicine, so surround your self with laughter and humorous situations and learn to laugh at yourself or make jokes about yourself without cutting yourself down. An example, not only do I have IBS, I also have GERD and regurgitate stomache acid...so I always got it coming out of 1 end or the other . 2nd, keep a postive attitude, don't think of yourself as being "afflicted" or some other negative word, think of yourself as a "survivor". I don't know if you are a Christian, but if so, a bit from the bible is that God does not give us more than we can bear. You are strong to deal with this. Think of all the people who don't have what you do, or even people who do have IBS, but not as severe as you may have it. Maybe God doesn't think they are strong enough to deal with it, but you are, otherwise God wouldn't allow it to happen to you. It's as simple as that.
Erin
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Erin
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IBS-D, GERD...
I got it comin' outta 1 end or the other!
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I must admit, you must be a stronger person that I. I've heard before..."God has chosen you to have this affliction so that you can serve as role model by honoring and worshipping, trusting God in spite of all this". But, to be honest, if that is the case, I would rather He had chosen someong else. I know, that sounds bad....but if I have to be honest, that is how I feel today.
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if I could go back and make it so I didn't have it, I wouldn't change anything.
Seriously? I don't feel this way about either my years with an Eating Disorder, or now with all my medical problems, pain, lack of answers or relief. And as far as God not giving us more than we can handle...I can't believe that. I wish is were true...but if it were, people would't be committing suicide to escape the pain of living. Maybe I'm just not a good enough Christian today. I'm not feeling very grateful...except for the love and support of all the people on the boards...and of course for the fact that my God sent His Son to die for us, so that we have the opportunity of experiencing a painless life in Heaven. That is the greates gift!!!!
Tell me, how do you make and keep friends when you are so sick you can't even go out or leave the house? When you can't do the simplest of things? I have yet to find anyone who wnats to "put up" with this "high maintainance".
I will really pray about what you have shared. I know I must get outside of this pain...but at this time, I'm struggling with just how to do that.
I wish you well with your other diseases. May we all find peace and happiness and acceptance with what we have to endure each day.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I am currently seeing 4 doctors (GI, a new PCP because I didn't have one, so he doesn't really know me yet, just started with a Health Psychologist (2 visits) and I've been seeing a psychiatrist for some meds for about a year. Yep, believe it or not, I'm on an AD!
I do see the doctor Bob went to....Dr. Michael Jones. But he seems more interested in laughing and cracking jokes than taking this seriously and giving me answers/tests/relief.
Okay, going to take another risk by opening my mouth and saying something else that I may regret sharing later (I must be feeling really free and open this morning to let my guard down for all the people on the web to read my personal thoughts). I don't understand why people are so scared to hear people say they want God to let them go to Heaven now. Isn't it better than the pain? We put animals out of pain ....but for some reason humans must remain in pain?
Maybe I really don't want to die. Maybe I would be upset if I was taken from this world... who knows. And yes, it would greatly upset me to hear someone I cared about say this same thing. Not because I think death is so scary (we are all going to die one day), but because I wouldn't want them to be hurting so badly that they thought this was their only hope for relief.
I don't have any plans to kill myself! But I do sometimes pray for God to take me home if the pain continues. But, I also pray that God gives me the strength to make it through the day and to learn to live with this pain. Maybe I'm praying for two contradictory things....maybe that's why neither are happening...they are cancelling each other out. (guess I have some sense of humor left, huh).
The fact that God has brought some people into my life who are able to have faith and hope for me...people who have shared their beliefs, passages from the Bible, and have given me such encouraging words of comfort and continue to try and "coach" me through treatment has been a blessing. For that I am grateful...I guess God is giving me strength to go on through other people since I am not able to have it for myself.
Sorry so long and reflective. I think a lot is going on in my mind...and I should probably start a diary instead of embarrassing myself on these boards!
These posts may be deleted when I "wake up" a little more this morning!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Beth
Please don't delete your posts. Whilst I am not religious in any way, I really appreciate reading your thoughts. Whilst I do NOT want to die, I also admit there have been times when I have had the thought that not being here might be a way out of all the pain. However, the thought of what that would do to all those that love me, family, partner and friends, means I never let the thought cross my mind for more than a few seconds. There is no shame whatsoever in saying how you sometimes feel - you feel it, therefore it is important.
Religious or not, we all have our darkest moments. Where you feel like you're screaming, but silently, and no-one can hear, God or man. The only thing we can truly know is that, at some point, sooner or later, you will feel better. Maybe only by a bit at first, but at some point you will feel like you beat this, or at least deal with it to a point where you don't feel like giving up.
Because I'm not religious, I don't read your words and go "Oh my gosh", etc, but me and everyone else on here hate the thought of his utterly rubbish illness getting the better or such a lovely person! Share away, we are all going through different versions and severities of the same thing, and can completely appreciate how you've felt.
I am the exact opposite of an expert, and I don't have any answers. All I can say is that we are all here for you, and I'm 99% sure others on here have had those 'darkest moments' where they've thought stuff they'd rather not. Keep fighting Beth, and one day it WILL get easier.
If you ever need to talk (sometimes easier to someone you don't really know all that well), you know where I am.
*MASSIVE hugs*
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http://ibsblondie13.blogspot.com/
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Just a thought, maybe the dr. who was cracking jokes was doing it for a reason. Laughter REALLY is the best medicine, and although dealing with what we have is serious, we can't be so serious all the time and take all the joy out of our life because of medical problems. We need to seek out those humorous people, watch funny movies and tv, surround ourselves with laughter b/c even though we have to deal with the IBS and a bunch of other junk, we can't let our lives come to a complete halt. I know, I know, easier said than done, but it IS doable. That's how I live now. I used to be like you and just so depressed about all the things going on medically. I was too chicken to kill myself, so I prayed to go every day for 3 months during radiation treatments to just take me up to heaven b/c I just didn't want to deal with it. By God NOT taking you up to heaven should show you that it's not your time to go. God put you here for a reason and it you may not know what that reason is, but take the time you are here to try and think about what you can contribute. Are you funny? Maybe you can help someone by giving them laughter. Are you philosophical (like me!)? Maybe you can help someone solve a problem. Think about your strengths and how you can use those and help other people. You may not believe that God does not give us more than we can bear, but I will tell you something I've learned in my life: Everything happens for a reason. We don't know what that reason is, but something it really helps to 1. look at your strengths and figure out how to use them to help others and/or yourself 2. look at your weaknesses and think about what you can do to turn them into strengths. It could be as changing your mindset, which is something I did, and changing my mindset/outlook has made it that everything I've persevered through has really served as an inspiration for almost all the people I know in real life. I'll give you more later.
Erin
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Erin
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IBS-D, GERD...
I got it comin' outta 1 end or the other!
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Quote:
The only thing we can truly know is that, at some point, sooner or later, you will feel better.
Unfortunately, this isn't necessarily true. If it were, I'd sure feel a lot better!
Keep me udated on your progress with your diet. I hope you do great with it!
massive hugs backatcha!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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...and postitive? I really admire your courage and acceptance.
Thanks for sharing. And please, keep posting!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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You might not believe it's true right now, but look at it one way - how many people on here were once in the depths of depression, unstable with their IBS and hating every minute of it, and who are now stable, happy, and trying to help others.
It absolutely can not carry on being exactly as bad as it now. I think we'd struggle to find people who have felt like this for ever because of their IBS - we all have ups and downs, but from the hundreds of people I've spoke to everyone pulls through in the end.
Don't worry, I don't expect you to believe it now! As you know I'm in the middle of feeling the worst I've ever felt with it at the minute, and have rarely left the house in months - so I struggle to believe it to! But, even though I'm not religious, I think we'll both get there in the end xx
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http://ibsblondie13.blogspot.com/
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I will! and I'm at work, so I'll answer more after work when I get home
Erin
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Erin
~~~~~~~~~~~~~~~~~~~~~~~~~~
IBS-D, GERD...
I got it comin' outta 1 end or the other!
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I think we all feel the same things, just depends on the day! I wish everyone here a good day at least every other day! I struggle too - a high stress / attention to detail job - with little sympathy from the 5 male owners, but a little from my new assistant. My one boss made a comment that was unforgiveable one day when I had an attack at work - my assistant almost died of embarrassment for me!
I am lucky though in that I have the most wonderful fiance who worries about me and understands that IBS isn't my fault and even through all of my trying I can't eat or keep anything with me. He often calls from the computer room to me in the bathroom "you still alive in there" and it is endearing, not mean. I end up crying b/c I'm so frustrated with my IBS lately, but he always tells me he loves me, no matter what. IBS just doesn't affect me, but us, in so many ways. I miss having dinner out - we never bother, I can't eat at most restaurants here. I miss ice cream!! (not soy or rice stuff) I miss having enough energy to love my future husband like I should be able to!!! We're getting married and my biggest worry is about having an attack at the reception, not that I'm actually getting married after 8 years.
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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Ah Erin, You just scooped the post I was going to make,well
just in part.  I'm the Bob that has this same doc.When
Beth complained about his joking around too much, I was going
to say, well what did Erin just say. Well, I guess I just said
it.<laugh> I remember one of the first things he asked me,
after I said I had a lot of gas, was," Whaddaya mean by gas,
do you fart alot?" Which I thought was rather humorous.He
also told me some humorous reenacting stories, as he was
a Confederate reenactor like I am. In fact, he's from
Manassas, Virginia. I think one of the problems is she
hasn't asked him enough questions. Nor do I think that
she's qued him in on how bad her pain has been.Otherwise,
I think he would be doing more to address the pain issue.
He has prescribed Buspar, but she hasn't said if that's
been helping any. I guess not, since she's been feeling
real bad just recently.
I must say, your outlook and mindset are *very* impress-
ive!! Obviously, you've had cancer and have beaten it or
are beating it. Along with IBS and other things, that's
quite a bit! You also seem very learned about life. Out of
curiosity are you less than or greater than 30 yrs.old? I
would guess older, you sound like you've been around the
block, but if you are younger, that would be even more
amazing! Keep up the good posts, I really like your style.
-Bob
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<img src="http://www.math.mtu.edu/~rwkolkka/BritPicA.jpg">
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Beth, I just read this after posting to Erin. I see you agree
with me. You know, I almost wonder if the B stands for
Brockovich. You know, the movie they made about the woman who
blew the whistle on some deadly work conditions she had to
cope with. I think Julia Roberts starred in the movie. -Bob
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<img src="http://www.math.mtu.edu/~rwkolkka/BritPicA.jpg">
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Sorry, but I'm not getting this one, Bob. Good movie though.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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...but two or three would be okay too!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I think he means the "B" in "ErinB" but really Erin was already taken and my last name is Bradford and all through school, there were 3 Erin's, so I was always known as "Erin B." I'm about to go home, I'll post in a few hours about some stuff for you then, Augie.
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Erin
~~~~~~~~~~~~~~~~~~~~~~~~~~
IBS-D, GERD...
I got it comin' outta 1 end or the other!
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I know this may sound corny, but your speech really touched me. It made me think that having IBS isn't so bad and that I AM strong enough to get through this. I know you were talking to someone else, but thanks for the talk! I appreciate it A LOT!!! 
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Tierney
IBS-C
www.StandardProcess.com[/url] = the home of REAL supplements
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Please try to be more positive. Your words seem like you have or are giving up. Do NOT let this illness beat you!
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I didn't even notice the B in your name before  .
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Hi Beth, I haven't actually seen the movie, I'll have to check
it out sometime then. I think the chances are pretty slim that
she is Erin Brockovich, but whoever she is, she's pretty sharp
! -Bob
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<img src="http://www.math.mtu.edu/~rwkolkka/BritPicA.jpg">
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<img src="http://www.math.mtu.edu/~rwkolkka/BritPicA.jpg">
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I'm gonna tell y'all about me and hopefully that will help you to understand my outlook in dealing with IBS and all my medical junk. This non-fiction story is only about the most important things that shaped my outlook. I only touch on 2, maybe 3 medical issues, when I actually have a dozen medical problems (I can make a list if you want). I'm always afraid to go to a new dr. b/c I'm afraid they'll think I'm a hypochondriac or something. Most of the problems are related, but conflict with each other. I'm at my wits end trying to eat properly to accomodate them all. Anyway, here we go....
I was born on a crisp October morning in lil Bozeman, Montana....ok, just kidding...no, actually I was, but I'm not going back that far
I'll start with age 13, 1990. Well, first, I was born blind in my left eye and the eye doesn't track right and every 10 years or so, they do a muscle manipulation surgery on it to make it straight. My first surgery was age 3, fast forward back to 1990. Middle of summer, we went from my hometown in Bozeman to Seattle, Wa. to have the surgery. The day before, they were taking final measurements and noticed that my right eye wasn't tracking right. They sent me in for a CAT scan just to make sure everything was ok. Is wasn't. They found a mass on my brain so they had me do an MRI to get a better view. After the MRI, they told us to wait for the neurosurgeon on-call. We waited, and waited, and waited...about 5-7 hours, can't remember for certain, but it was night time before he ever came. We were in the waiting room in the neurosurgery dept., only ones there, and all we knew was they found something, but we didn't know what. All sorts of things were racing through my head about what it could be and honestly I had no clue, cancer never even crossed my mind. Turns out the dr. on-call was still in surgery finishing up a 35 hour brain surgery! He finally came in, told us I had a brain tumor, extremely large, they think I've had it since birth, talked about possible symptoms my folks may have noticed. Like my crooked smile, mom always thought it was cute, inherited from dad, but turns out it was a symptom of the tumor; other things like my eyes different sizes (we just assumed it was b/c I was partially blind). He told us the tumor was literally wrapped around my brain stem, had it twisted in a knot, and they needed to do surgery within the next month and they wouldn't know if it was cancerous or not until they did surgery. All I could think about was losing my hair.
We drove back home the next day and for the next month I cried myself to sleep every night. August 13, 1990 we drove back to Seattle for the surgery. My parents found a boarding house a mile away from the hospital to stay at. I went in on the 16th for an angioplasty to shut off the blood vessels that were feeding the tumor. When I woke up in recovery, my folks asked if I was hungry. I told them I wanted a milkshake and cheeseburger from Mickey D's (McDonalds). In retrospect, that was the last laugh I had for nearly 10 years that didn't come from a movie. The next day I went in for the surgery. It finally hit me while they were wheeling me away from my folks that I might not see them again, so I told them I loved them, and cried the rest of the way down. I also thought about my little brother, he was turning 9 on the 21st. I didn't really believe in God then, but I was thinking "don't let me die! Josh won't ever have a good birthday if I do!" As you know, I believe in God now and he answered that prayer!
After surgery, I was in ICU for a few days doped up on morphine. Every time I started to wake up, they gave me more to knock me out. I hated it b/c of the "nightmares" (they make me laugh now!) After ICU, they moved me into my own room. My mom and her friend from a Seattle 'burb decorated my room....but I couldn't tell them how much I appreciated it. I lost the ability to talk for a few days. In fact, I lost the ability to do anything other than use my eyes and my mind. I couldn't hear, talk, walk, feed myself, write or anything. I was in the hospital for about a month recovering. During all the time, all I could do was talk (finally), see, and think. Two days after I left, I yawned and suddenly my ears made a "POP!" and I could hear again! Go figure! Took 6 months to relearn how to write and walk. I'm actually sorta ambidextrious (right and left handed) b/c I used my left hand to eat and write.
Because of its location, they couldn't remove the entire tumor or I would have become a vegetable. The only other real good thing to come from the surgery (other than removing the part of the tumor they did so I would live) is that it was NOT cancerous.
Well, the next 8 years of my life were filled with anger and hatred. I believed in God, but I hated Him and wanted nothing to do with Him! Since there is no physical God to be mad at, I took my anger out on everyone else. I've developed a permanent glare from those 8 years (I guess your face CAN stay like that!)
I was still a good girl, always have been, but at that time it was more b/c I was considered something like geek the freak at my school, no friends until my Junior year of high school (except 1 who I didn't realize was a true friend until college and we had been friends since the year before surgery).
The summer of 1995, almost 19, I just got back from spending June-August with my grandma in NC. I was getting ready for college and went to sleep 1 night a week before my first day. Now I've heard of this happening years and years ago, but never believed it could happen. When I woke up in the morning, I could not hear a thing. I went deaf literally overnight 1 week before college...and my major was Spanish! This is one year of my life that in a way I wish I could just erase or skip through. It was probably the hardest year of my life. When I went deaf, they ran an MRI and found that I had 3 tumors (the partially removed 1 and 2 new ones)! My dr. at home conferred for a while with my dr. in Seattle and finally at the beginning of October, it was decided that they would try radiation therapy to kill the tumors or at least stop them. Proposed start date: October 18th, my birthday! I told them no, absolutely not starting on my birthday! Finally they moved the date to the 20th.
Well, that last few weeks of school I fell into really deep depression and quit going to my classes even though I was still officially enrolled until October 17th so I could stay in the dorms. On the 19th, we drove back to Seattle. The hospital hooked us up with a nice boarding house to stay at. A lot of their radiation patients stay there. Mr. Martin was funny! I had radiation treatments every day M-F for 3 months (Oct. 20th - Dec. 19th) and every day I went in for treatment, I would lie on that table and pray for God to kill me. It was just too much for me, felt like I couldn't bear it any longer and I just wanted to die. My mom stayed with me in Seattle, but I was so depressed I pushed her away. I still apologize for it to this day.
I had a really hard time when I came back home. The school told me not to come back, but I did anyway...but I didn't plan to stay somewhere that didn't want me, so I transferred to another school and was there a year and then finally got out of Montana and wound up in Raleigh, NC at NCSU. Took me 7 years b/c of the transfers, but finally got my BA in History and then stuck around 3 more to get my MA in Public History.
Well, I'm not done yet! Fast forward to 2003. I was living by myself at the time and woke up 1 morning, getting ready for church, and suddenly I felt like someone grabbed my waist from behind and then started tapping my waist on the right side. I started to freak out "who's there?!?!?!?!" and started turning in circles to find who it was (think of a dog chasing it's tail!). I finally realize there was no one there and that something was wrong with ME. I called my friends who lived the closest and asked them to come take me to the emergency room. They didn't get me in to see a dr. until about 5pm (I went in about 9am!). Finally they told me it was seizure and that 2 newer tumors (I had 5 total at the time) were pressing on a nerve causing them and the only way to control them was surgery. So, my mom flew out and my aunt drove up from a nearby town. This surgery was MUCH better, only in the hospital about 2 days and then home to recuperate and by the end of the week I was out with my mom and aunt shopping!
Back in 1998, I knew that I had to learn to accept my tumors. I'd have them all my life and I could be angry about it, depressed about it, but I couldn't let them stop me from living. Most of my medical problems come from my tumors, and the only good thing about them is they are not cancerous. This is a poem I wrote in 1998 is about the inner turmoil I went through to accept my tumor and all it entails (like my deafness).
IT
Because of IT, I am deaf.
Because of IT, I am blind in one eye.
Because of IT, life is so hard...
That sometimes I just want to die,
But on the flip side...
Because of IT, I know my lord.
Because of IT, I know who I am and where I stand.
Because of IT, I understand life...
And always willing to lend a helping hand,
But you see. . .
Because of IT, death is knocking at my door.
Because of IT, I have hardly a friend.
Because of IT, I feel I have no one around...
On whom I can depend,
But then again...
Because of IT, I have faith.
Because of IT, I've had notions near impossible to conceive.
Because of IT, I can look in the mirror...
And be proud of what I have achieved.
So you see, for me, the choice is clear...
I'm glad the "IT" is here.
I firmly believe that everyone has an "IT" in their life, something that they don't want, but if they take the time to look at it and dissect it, they can find at least 1 thing positive about it. Take IBS for example. I see a positive thing: I get lots of exercise when I get the runs...b/c I gotta run! And then sitting on the pot using my stomach muscles . I'm not saying it's something you should be glad about or anything like that, but don't dwell on the negative, which is kind of the point of this poem. If you think something negative, counter with something positive, even if it's the same positive over and over again. Are you stuck at home b/c of the IBS, maybe it's positive in the sense that it helps you catch up on your favorite shows! Ok, I know this all sounds stupid, but it really is a positive! Focus on the good, not the bad.
Augie, you asked me about friends. Let me tell you I may be young (29), but what I've learned is in order to have a good friend who is understanding about the problems, we need to BE a friend in return. There might be a lot we cannot do, but we all can listen. I know in the past I've tended to unload all my problems on friends in the past who decided they didn't want to be my friends anymore. It took me a while to figure out why. They always asked me how I was, always listened to what was going on, offered support and advice, but I never did the same in return. It was always about me, me, me. I'm not saying you don't already do this, but this is just something I've learned.
...There was something else I was going to add, but I forget right now.
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Erin
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IBS-D, GERD...
I got it comin' outta 1 end or the other!
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Re: Wow
#258030 - 04/13/06 10:59 AM
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Blondie13
Reged: 02/28/06
Posts: 641
Loc: Sheffield, England
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You are truly inspirational. After reading your story I can't think of any other words that would do you justice. Feel utterly humbled .
Wow.
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http://ibsblondie13.blogspot.com/
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Re: Wow
#258032 - 04/13/06 11:12 AM
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I agree. It kind of puts my suffering in perspective. God bless you Erin.
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Jon - (IBS C)
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Re: Wow
#258038 - 04/13/06 12:06 PM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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You are a wonderful person with a great attitude! Thanks for sharing your story with us. Hugs!!
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Taking it one day at a time.....
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The other thing I learned about forging friendships: You MUST be open with them. We want our friends to be supportive of us, but how can we realistically expect them to be if we only tell them part of the truth? Now I didn't use to be, but I am a very open person (as I'm sure you saw by the last post). Let me give you an example about openess leading to stronger friendships.
Back, in August, I was "teaching" in the nursery of my church with about 4 or 5 other women. 1 of them who was just a sub that day, not a regular teacher, was someone I never met before named Linda. Linda wanted to strike up a conversation with me and asked how I was. At the time, I was seriously struggling with money. I had just gotten my MA in May, but no one had hired me. I was working a part time job only earning about $100 a week, I was just barely scraping by, and really not even that well b/c checks were bouncing left and right. Instead of saying I was find or just having some money problems, I opened up, told her everything. The other 2 teacher were also listening to what I was saying. When I finished I was in tears from all the stress. The other 2 teachers went back about their business, but Linda gave me a big hug and then wrote down her phone number and told me to call her and she might be able to help out. She ended up hiring me to clean her house at $10 an hour and even though I was still just getting by, no more checks bounced. I worked with Linda and her husband Bob from August through October and coming over every weekend to clean. I also learned a lot about them. For instance, they had 5 kids, all adopted. 2 were bipolar and 1 was autistic, 3 of them were a set of triplets (the 2 bipolar and a "normal" one). The 2 bipolar kids had LOTS of problems, they have other health issues which causes a problem with their bipolar episodes.
Over the course of those 3 months, Linda has become my best friend even though she could be my mother, and her family has "adopted" me. They really are supportive of everything I go through, medical and otherwise and have become like advocates for me. I can't really do anything for them, at least not anywhere close like they do for me, but I listen and I encourage especially Linda who's health is not so great from all the stress. We spend time together after the kids are in bed and just relax and talk. In Feb., I noticed Linda was really stressed out so I took her for a weekend to a resort hotel to "get away from it all" and just relax...I would have sent her and her husband instead, but I couldn't take on caring for their bipolar son, long story. Anyway, the point to this is that all of this was possible b/c I opened up to a stranger.
The moral of the story? Be open, don't put up a wall to try and protect your feelings. Sure, you may get hurt in the process, but even just 1 friend like Linda is worth it.
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Erin
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IBS-D, GERD...
I got it comin' outta 1 end or the other!
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sorry it has taken me so long to reply..... I completely relate to you Beth... I can't tell you how many times I prayed to die. I didn't think I could kill myself... but the thought (still) of having to do this until the day I die is beyond overwhelming. I would trade this for cancer or another life threatening disease anyday- at least an end would be in site... you either die or they have SOME means to treat you. Not just leave you utterly alone to struggle. People just do not understand the devatstation this disorder causes... especially if you are alone. I'm scared to death sometimes at what will happen if I can't work at some point. WHAT would I do? On a side note- to answer your other question, I moved to AZ for my IBS, and i'm moving back b/c of my IBS (to Palos Hills area). I'll email you and give you the long story of it. It's all IBS related. But I don't recommmend Arizona- not at all!
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Erin, Having read your two long posts, you are an amazing person. PM me anytime you wanna chat - what you have gone through in your life is phenonminal (sp?) And I thought I had medical issues! Your perspective on friendship is great. Wish I knew someone like you in person.
You go girl!!
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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You're a wonderful person!
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Taroh, I know you feel this way right now b/c of your struggles, but you have no idea what you are talking about really simply b/c you have NOT faced a life threatening disease. In a way, IBS is, at least the IBS-D b/c you can become dehydrated and if you're not replenishing the liquids, you could die from that. Many of our ancestors in the 1800's and before died from that b/c they didn't know that...but anyway.
The point is, I do have a life threating illness. No it's not cancer, but my primary tumor (from when I was 13...read my post about me if you haven't already) is literally wrapped around my brain stem and had it twisted in a knot. they removed 98% of in 1990, but had to leave the 2% b/c it encapsulates a major artery and is literally sitting on top of all the nerves that control every function of my body. Even if the tumor doesn't kill me, if it grows anymore I'll probably become a vegetable or at the very least paralyzed, completely blind, etc. For me, IBS is the very least of my worries!
Another thing that even though someone has cancer 1. it's not curable and 2. drs' can say you have so much time left to live, 6 months, a year, etc., but they are not always right and 3. even if they do die, it's not necessarily the cancer that kills them. I have a cousin who had ovarian cancer. In 95% of the cases of that kind of cancer, the patient will die within 2 years even with chemo. If they find it early enough, they may live as long as 5, but it's extremely rare to live longer than that. My cousin lived 10. During her battle and constant chemo treatments, her husband was diagnosed with hodgkins disease and died within only a few months of diagnosis. She continued to live, 10 years. In the end, she never died of cancer. I can't remember what it was now, been about 15 years, but it wasn't cancer or cancer related. Compared to radiation or chemo, IBS is a walk in the park, and she went through chemo for 10 years. I went through radiation for 3 months. 22 years of my IBS doesn't even compare to what I went through with radiation.
I know the grass always looks greener on the other side, but believe me, it's not. Try not to look to far into the future. None of us knows how long we're gonna live. Start out by taking it one day at a time. That what I did when back in 1995. Just one day at a time. Now I can look into the future without seeing total dispair, but I can't look too far into it. So I look maybe the end of the year. Set goals for myself outside of my medical junk. My goal this year is finally learn sign language! I've been deaf almost 11 years, but never been able to learn it b/c I was in college. I'm done now (sorta!) and have the time, so I'm trying to learn more. I know I won't be fluent by the end of this year, and that's ok. At the end of this year, I'll look back on the progress I've made and set new goals. Maybe write an article for a magazine. I don't know. The point is don't look too far into the future. Until you're ready to look past the here and now, just take it one day at a time. Believe me, things are not as bad as they seem. I'm learning that. No matter how bad I think I have it, I always learn about people who have it worse.
Erin
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Erin
~~~~~~~~~~~~~~~~~~~~~~~~~~
IBS-D, GERD...
I got it comin' outta 1 end or the other!
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Really?
#258116 - 04/13/06 06:29 PM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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Why do you not like AZ that much? The weather here is awful. I think I need a move, soon.
Please email me again because I accidently hit the delete button!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Thanks all for your kind words. The point to all the postings is to show Augie (and others struggling to stay positive) that it IS possible to change your outlook. Back in 1997, if you had told me that in the following years I'd not only learn to accept my medical junk, but to embrace, I'd have thought you were nuts. It's not a process that happens overnight and it's not that I don't struggle anymore, I do, but I try hard to remain positive, even though I'm a negative person by nature. It takes work, but it can be done.
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Erin
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IBS-D, GERD...
I got it comin' outta 1 end or the other!
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