Date: September 21, 1999
Interstitial Cystitis Network - Chat Log (© 1999, www.ic-network.com)
Topic: An Evening with Terri Jo Myers, National IC Spokesperson
Speaker: Terri Jo Myers, LPGA Tour Member<icnmgrjill> Welcome to the ICN Support Chat for September 21, 1999. Our guest speaker for tonight's meeting is truly a remarkable woman, Terri Jo Myers. Many of you have either watched her on TV or videos speaking on IC or have read the transcripts of her congressional testimony. She is an IC success story. She lived with IC for many years but then found a treatment which has eliminated her symptoms. We're very anxious to learn more about her experience with IC and what wisdoms she has for us today. Welcome Terri Jo, we're so happy to have you here tonight?
<terrijo> Welcome to everyone and I'm glad to have an opportunity be on-line.
<icnmgrjill> We're going to start this meeting with some basic Q&A. Terri Jo, can you tell us when and how you were diagnosed?
<terrijo> I was diagnosed two weeks before my senior year in college in August of 1983. I really dread going into my diagnosis because I am a very rare IC patient. I was diagnosed within two weeks of my symptoms. Having the status of an athlete, I think that that speeded up my diagnosis because I needed to find an answer for my symptoms quickly.
<terrijo> I was experiencing pelvic pain, urgency, frequency and pretty much your basic IC symptoms and at first I thought it was just a bladder or yeast infection. The route that we took was that my gynecologist did not find bacteria so she then sent me to a neurologist. After several tests that were run, the results were still negative, the neurologist sent me to a urologist. The urologist performed a cystoscopy and, when I woke up in the recovery room, I was told that I had this very rare disease called interstitial cystitis.
<terrijo> It something that I will never forget. I find this is very important for me not to forget it. I was told that it was very rare, that there was no cure and that there was very little research and that this is something that I would have to learn to live with in my life. And at the time, those words were pretty much etched in stone in my mind with no way out. The reason that I am compelled to work hard for IC patients is because I don't want other patients to wake up in the recovery room with those same words. That is something that compels me on a daily basis. And here it is sixteen years later, I now have no symptoms of IC so the prophets were wrong!
<icnmgrjill> Here you were in your early twenties and you were considering becoming an professional golfer. How did IC change your career plans?
<terrijo> Well, it didn't change my career plans but perhaps I should have because I paid a high price to play golf at the professional level with IC. I was effected personally more than professionally. Playing golf on the LPGA tour requires travel, up to 30 or 35 weeks per year. As any IC patient knows, leaving the comfort of your home and bathroom is a scary venture. I think the anxiety I lived with to make the decision to travel was very painful. Emotionally, I suffered a lot because of the choices I made, such as airplane travel or being in hotels, let alone trying to play a round of golf with a constant urge to go to the bathroom was overwhelming. I'd say that the stress level was immeasurable. What it did to me, my husband and my family was rough. Knowing what I know now, I might not have taken that route. But the LPGA was my life and it gave me the chance to take my mind off of the constant pain of IC.
<icnmgrjill> You were married quite young. How did IC effect your relationship with your husband?
<terrijo> I'm happy to say that I'm still married to him today! But it was not without a price. If I can say one thing to the people in here tonight is that I really made the mistake of not being honest with my husband at the beginning. Sex was something that was very painful and I never told my husband, probably close to 11 years, the price in pain that I paid for 24 to 48 hours after sex. If you just look at that picture, you can imagine the anxiety that I had when I thought about having to have sex. So, the relationship with my spouse, the anxiety and stress. caused my IC to worsen and sometimes I would even cause an argument to avoid intimacy.
<terrijo> I work now very hard at forgiving myself and at not beating my self up over my past IC life as I call it. It was several years after I started taking Elmiron that I really opened up and talked with him about it. I don't know if he felt better (he might have felt worse), but I felt better to finally tell the truth about it.
<terrijo> If I can say one thing tonight, please be very open and honest with yourself about how your are feeling. If you are having a particularly bad day, you need to be honest with how you are feeling. If you can't accomplish much that day, then that's just the way it is. Stop and rest. Had I adopted that strategy right from the start, I probably would not have been as devastated as I was.
<terrijo> I think that in being up front and honest with your spouse, they can better understand the disease and better understand the emotional journey that it is taking on you. But, as I did, I was very guilty of hiding my anxiety and stress, as much as I could possibly hide it, but that did not work.
<icnmgrjill> We had a wonderful email for Terri Jo from an IC patient whose spouse, at first, didn't believe in IC. And it wasn't until he saw Terri Jo speak on television that he truly understood the nature of the disease. So, Terri, did your family (your whole family) really get it at first?? Did they believe you?
<terrijo> My family did get it. I'm very close to my parents. They truly are my best friends and I feel very blessed that they understood that I was ill. But that certainly didn't keep me from hiding my toughest times from my husband. Again, the hardest time for me was traveling and I always traveled alone. I rarely shared with my husband the worst moments of my travel. Even though he understood my IC, I didn't reveal all the details.
<icnmgrjill> What was keeping you from telling the truth?
<terrijo> I felt like my husband was in the position to deal with the disease when I was home. I felt like if he had a break from me, where he wouldn't hear the IC complaints from me, that I was giving him some time off.
<icnmgrjill> That's an important lesson for us. Sometimes IC patients keep secrets from their families or doctors or friends and by holding those secrets close to our hearts, it can definitely make our anxiety much much worse. It's so important to clearly state your needs to your family members and to your doctors. But, you made it, didn't you!
<terrijo> Yes, I made it!
<icnmgrjill> What were some of the things that you did that you helped you get better, physically, mentally and emotionally?
<terrijo> After many years, I finally took charge of the disease instead of having the disease take charge of me. I started to educate myself on the disease. Another very important factor is that I found a compassionate doctor who was knowledgeable about IC. That was the big thing missing in the first 11 years that I had IC. And another big factor which I mentioned earlier is that I learned how to forgive myself for all of my negative thoughts about myself because of the disease and for all of the anger that I held.
<terrijo> This disease, I have come to learn, is not my fault. That is very important for me to get across to each one of you! This is NOT your fault.
<terrijo> My doctor happened to be a golfer and I was able to play golf with him and I felt comfortable enough to ask him any question I needed to ask him and also run by him my past behavioral patterns caused by my IC. He was not only my doctor, he was a good support and my ally.
<terrijo> It's so important to find people to talk with. If not your doctor, another chronic pain sufferer.
<icnmgrjill> Let's take some time to hear about your experience with Elmiron. You've clearly had a remarkable and inspiring recovery and now have no symptoms. What do you owe this too?
<terrijo> Definitely, for me, Elmiron. There is no question that Elmiron has saved my life. I know that's a strong statement to make, but there is no doubt in my mind.
<icnmgrjill> Did you do any other treatments first?
<terrijo> In 1991, I tried DMSO but it seemed to flare up my IC. That scared me away from further treatment until 94, when I happened to meet my current doctor. What we did first was work with my diet. I'm sure that you're all familiar with the information on the IC diet. I showed improvement, especially in pain. I still had urgency and frequency, but the pain was lessened when I reduced the acid foods. And then, because I showed success with the change in diet, my doctor then felt that Elmiron may be of benefit even though I had had IC for eleven years. He thought that I would probably have a good chance of responding to the Elmiron.
<terrijo> It took about 4 to 5 months before I felt that my symptoms were changing. It was very gradual. The funny part of that is that, one day, I just happened to notice that I was just driving down the road and realized that I did not go to the bathroom before I left my house. Every IC patient knows that that is the last thing an IC patient does before we get in a car. I also noticed that my fingernails weren't digging into the palms of my hand on the steering wheel as I was looking for the next bathroom. Eventually I noticed that I was sleeping longer, for two hour intervals rather than getting up every 30 to 40 minutes.
<terrijo> What I want to let you know is that I don't believe you will wake up the next day and all of sudden have no symptoms at all. It takes time and, at about the year point, that's when I really started to notice that I had very little symptoms of IC. As time went on, I just got better and better until now I have no symptoms at all.
<icnmgrjill> Did you have any side effects from elmiron?
<terrijo> No, I didn't have any side effects. I wouldn't have minded losing some hair if it meant that my symptoms would get better.
<icnmgrjill> Let's go ahead and take some questions from the floor. Matt's mom wants to know if you still have to watch your IC diet?
<terrijo> No, I eat anything I want. But, I gradually reintroduced foods after approximately 8 months of Elmiron. (This was not the time for a coffee binge.)
<icnmgrjill> ICN Lesa wants to know if you have any suggestions for IC patients who are travelling. What are your best travelling tips?
<terrijo> What a good question that is. I really don't have any great tips cause I don't know how you combine IC with easy travel. I remember travel as being my most difficult challenge and while I experienced the symptoms of IC I never found an easy way. I think the scariest part of IC is removing yourself from a bathroom. I look back and try to think what I did to make it easier, but it's kind of a blur.
<icnmgrjill> Now, we have new chair cushions which make sitting in car easier and, of course, I think most IC patients realize that if you're not feeling too well, that's probably not the best time to get into a car. Kind of listening to and respecting your limits. And also, of course, staying on the IC diet.
<icnmgrjill> Alexa and her mom want to know if you are still taking Elmiron.
<terrijo> Yes, I'm still taking Elmiron.
<icnmgrjill> Helene wants to knows if you ever bled when you urinated?
<terrijo> Not to the naked eye, but I always had a pretty high amount in my cultures.
<icnmgrjill> We have an anonymous question from the floor who wants to know if you feel that Elmiron helped to improve your sexuality? as in pain relief?
<terrijo> Absolutely.. I have no pain during sex. Elmiron really has made me free, in every aspect of my life, whether it is what I eat or drink or travel. After the Elmiron worked for me and sex was no longer painful, I finally spoke with my husband about the pain issue.
<icnmgrjill> Hope wants to know what you are doing now professionally?
<terrijo> I am recovering from my second back surgery in eight months and will start back on the tour in the middle of October, fully recovered!! The back surgery was not related to the IC in any way.
<icnmgrjill> What advice do you have for young mothers with IC?
<terrijo> That's a great question. If at all possible, delegate as many duties as you can to family members and friends. Don't feel like you have to be super mom. I made that mistake and I was not capable of raising my daughter on my own during those years. That's an issue that I'm probably still working through.
<terrijo> At the time, I felt like I couldn't take care of an infant child who needed so much attention and I was very sleep deprived as any young mother is going to be, whether they have IC or not. So, I beat myself up because I thought that I should be doing everything on my own.
<terrijo> It wasn't until I realized that I needed some help (and that it would make my situation better) that it got easier. Friends and family can really pitch in. I surrounded myself with family members constantly to help me through the rough moments.
<terrijo> My daughter was the most wonderful gift and now having the ability to share everything with her is the world to me. It was worth the struggle and I'm very glad that I had my daughter.
<icnmgrjill> This is an important point. As I talk with many young mothers, I've seen that they've set a double standard. They work hard and run themselves into the ground for fear that they won't be a good mother. With IC, what we find is that it's important to pace yourself. You don't have to be supermom nor would you expect your husband to be superdad if he had IC. So, good, clear communication about how people can help in the house to take some of the pressure of the IC patient is a great foundation for parenthood!
<terrijo> I used to get upset because I couldn't take my daughter to the park. I realize now that it was more important that my daughter get to the park, whether it be with my mother, husband or friend! I didn't see that until later. Life doesn't stop with IC. We just have to make some changes for those uncomfortable days!
<icnmgrjill> Reba wants to know if you are making any more public appearances on behalf of IC patients?
<terrijo> Yes, I have an opportunity to speak to congress on November 5th and I also am working on a schedule for the year 2000, a very successful campaign for IC. I'm working with Alza and it should bring a lot of public awareness on IC!
<icnmgrjill> Has IC changed your outlook on life?
<terrijo> Absolutely and in a very positive way. Depending upon where you are in your IC life, that may be hard for you to believe. But it has positively changed mine. I now am able to see challenges as opportunities and I turn challenges into opportunities. I've only been able to do this because of my life experience from IC. It has made me a better mother, a better wife and a better person.
<terrijo> I look now for positive ways to deal with problems. I believe that anyone who is battling IC is a very very strong person. But, when you're having a rough day, that you feel weak. I think sometimes that's hard to focus on when you are having a bad day. IC is going to make you stronger.
<icnmgrjill> What advice do you have for a newly diagnosed patient?
<terrijo> #1.. Find a compassionate doctor
<terrijo> #2.. Understand that there are treatments out there and there is no reason that you have to live with the symptoms that IC present. It's not like it was 16 years ago. There are treatments available and lots of hope. You don't have to have to exile yourself! Go to your doctor and explore treatments, learn about IC, explore the diet and be truthful with your family and spouse about how you are feeling. IF a situation comes up that you can't deal with that day, then just don't do it! Let your body rest.
<icnmgrjill> Tab wants to know if you ever had the feeling that you couldn't empty your bladder.. and what did you do about it?
<terrijo> Absolutely and that was probably my major symptom of IC. I never could fully empty my bladder and sometimes I would have to turn around and go to the bathroom a minute later. Sometimes, if I could hold off from going to the bathroom, the longer I could hold off the better chance I had of emptying my bladder. But not when I was in a lot of pain. The Elmiron improved this for me and now I can empty my bladder completely. I now know the feeling of an empty bladder again.
<icnmgrjill> Teri wants to know if you are ever bothered by UTI's and if they inflame your symptoms?
<terrijo> Yes, I did suffer from UTI's approximately four years ago. I did test positive for a UTI, which ended up being honeymoon cystitis. It didn't set my IC back at all.
<icnmgrjill> Terri Jo, I've been looking forward to this presentation because I think that you can help me discuss a very important topic, the occasional suicidal thoughts that some IC patients have had. I know that when I was at my worst, I certainly did. But I, like most of us, made it through that moment. You've spoken very passionately about your darkest moments with IC and I was wondering if you could share with us how you got through those moments of despair.
<terrijo> That's a great question. I would have to say that when I look back, I realize that thoughts of suicide went through my mind frequently. When that happened, I would try to picture the next day, the sun rising, and I wanted to be there to see it. I know that sounds corny, but that's how I made it through some of those IC nights. I felt that if I could make it one more day, I would be okay.
<terrijo> I also tried to give myself something to look forward to. But it's easier to say now than it was to do. But we all need to realize that our lives are important. You are very important to your family and loved ones. You don't need to be a hero just make it to the next day. If that means that you need to crawl back into bed and turn the world off for a while, then do it.
<terrijo> Another fact to remember is that you are not to blame for how you feel. You are not to blame for IC. It isn't your fault. The rage and anger that you may be holding is also not your fault. I know sometimes that we direct it at our families and loved ones but they will forgive us.
<terrijo> Stress plays a very important part of IC and suicidal thoughts. Sometimes we try too hard to live up to the expectations that we put onto ourselves or that we perceive others put on us. We need to realize that we're human. We're going to make mistakes. But others will forgive and care for us.
<terrijo> You need to let someone know how you are feeling. Don't do it alone. Talk to someone. Find a way to express your anger constructively. I used to go out and hit the golf ball as hard as I could hit it! That worked well. And also, keeping your anxieties in perspective. For me, I adopted the feeling that there is very little that can't be put off until tomorrow.
<icnmgrjill> It's normal to worry. It's normal to have fears. We all have had fears, especially when we're being diagnosed. But what Terri says rings true. It's relatively normal for chronically ill patients to have desperate thoughts at times. At those moments, we have to take a step back and take stock of how we are feeling. If we're angry, we need to get it out constructively. If we're having panic attacks, we need to educate ourselves about how to stop those, like by taking a class in anxiety management. If we're depressed, we need to ask for help from our providers. It is vital that IC patients learn how to relax and be great stress managers. We are our own best friends and the skills that we learn today, as a result of our IC, will be valuable for the rest of our lives. So, take the time and learn new ways to handle stress, anger, depression, etc. etc.
<terrijo> Turn this challenge into opportunity. I would not have learned how to deal with this, without having IC. IC has made me a better, more skilled, more compassionate person.
<icnmgrjill> Terri Jo, thank you so much for your generous time. We so appreciate your insight and it's wonderful to hear such a success story. You've touched many lives by being very honest about how difficult it was. You're telling it like it was for you and also giving us the chance to be honest with ourselves. Not every IC patient may have pain, but we certainly feel some of the same stresses. We wish you the best of luck in your future appearances and certainly hope that we can help you out in any way that we can.
<icnmgrjill> Reba wants to know if your congressional testimony will be on TV
<terrijo> No, unfortunately, it won't be. But, we should be on TV alot now!
<icnmgrjill> Diane wants to know what dosage of Elmiron you were taking
<terrijo> I take 100 mgs three times a day, but talk to your doctor about the dosages you are taking. Don't just do what I did.
<icnmgrjill> Do you plan to take Elmiron for the rest of your life?
<terrijo> Yes, until they tell me otherwise.
<icnmgrjill> Folks.. let's show terri jo our appreciation!
<cricket> Terrijo, Thank You Very Much!!!!!! You give me reassurance and offer me even more reason to stand firm on my convictions.
<Carol_L> Terrijo, thank you so much for sharing your story with us. This was a real gift to us. Thank you!!
<icnmgrjill> :: as she stands and applauds:::
<lalinda> Thank you so much Terri Jo. You are a light at the end of the tunnel.
<ICNLesa> Thank you so much Terri Jo!
<Helene> Thanks Jill...you have answered a lot for me this evening
<mattmom> BRAVO!!!!!!!
<Helene> Thanks Terri {{{{{}}}}}}
<alexa_and_mom> thanks for being so open and honest, Terri Jo!
<SusanTG> Thanks for being honest and open
<racel> Thank you Terri for your courage and persistence!
<icndiane> Thank you Terrijo
<Teri> Thank YOU TerriJo
<Lin> Thank you we need more people like you on our side.
<SueC> thank you terrijo
<Anne> Thank you terrijo, you have given me light at the end of a tunnel
<Hope> Thank you terri jo, if it weren't for you, our pediatrician wouldn't know about ic. hes a golfer! Thanks,
<LisaS> Thank you TerriJo
<ICNLesa> :::clap clap clap:::
<Jeanne> Keep fighting for the IC Cause!!
<RebaJo> Thanks Terri Jo
<Claire> Thank you Terrjo, You are inspirational and reassuring
<terrijo> I will Jeanne!
<terrijo> I wish the best for everyone!
<SHERRY> thanks very much
<ICNLesa> And to you Terri Jo! Thank you!
<terrijo> And just know that I will not stop fighting for IC awareness. I will not!
<terrijo> Good night everyone!
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© 1999, The IC Network, All rights reserved. This transcript may be reproduced for personal use only. If you do so reproduce, we ask only that you give credit to the source, the IC Network, and speakers, Terri Jo Myers and Jill Osborne. For additional use, please contact the ICN at (707)538-9442.