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  • KrissyBaker
    replied
    Thanks for the proverbial kick in the rear guys! As well as the support. [img]smile.gif[/img]

    I'm doing much, much better. My GP was kind enough to write me a referall to a pain clinic and in the meantime called me in 50 vicodin, unasked! I was practically moved to tears by her ability to finally treat me!

    I am also going to see a Urogynecologist in October who should start me on some sort of meds, I'd imagne.

    Until then I've started keeping a voiding diary as well as a food diary and sticking like glue to a strict IC diet. I've also started working out with a physical therapist and by myself three to four times a week.

    In general I'm still in pain, but control-wise I'm feeling MUCH better. A lot more like I have immediate information at my disposal and that I actually genuinely am doing everything I can myself to minimize the pain from the disease.

    The only thing that worries me now is if I go into remission before I get in to see the uro/gyn. I'm praying for remission, but I am concerned that if I go in to see him and I'm not in a flare that he'll have trouble believing how bad it really was.

    Even now I just started keeping my voiding diary yesterday when I started to feel better. It was a LOT worse than that two weeks ago.

    The truth also is that knowing that I have vicodin has taken some of the edge off. I don't use it unless I need it, but knowing it's there helps me make decisions about how long I can stand the pain. When I didn't have it I was judging how long I could stand the pain until I had to get into the ER, and how long I'd have to wait until someone saw me, etc. etc.

    Anyhow, thanks for the kick in the pants. Any doctor from now on that doesn't come at this disease with me from a "we're going to try stuff until we get this licked" perspective I'm kicking to the curb. Life's too short and IC is too unbearable to waste time.

    <img src="graemlins/hi.gif" border="0" alt="[hi]" /> Hi! [img]biggrin.gif[/img]

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  • ryanm
    replied
    Welcome aboard Krissy!!! Gosh, I don't know how many times I cringed when an unsupporting boss I had would ask "Are you feeling better, yet?" or "How come you're not feeling better yet?"... BECAUSE PEOPLE LIKE YOU ARE OUT ROAMING THE EARTH! [img]mad.gif[/img] Ok, Ok, maybe that'a slight overreaction... Geesh!

    Also, I know how exhausting it sounds to have to do the Dr hunt.. BUT, you need to! I've gone so far as to get myself black-balled out of the local uro's because I don't agree with any of them and I don't keep my mouth shut about it! [img]rolleyes.gif[/img] Finally, 4 GPs and 3 uros later I have a dr that will give me pain meds I need! I had one dr that did the 30 vicodin/30 day deal. Then, when I came in for a refill gave me a big speech about addiction and that he wouldn't give me anything more than Ultram.. Oh wait, I was the one who had to tell him that's a no-no with Paxil!

    ANYWAY, long story short, you have found a great place for support here!

    Please, Please look into finding a new doc! It will be worth it when you find a decent one!

    <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

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  • Vlinnie
    replied
    Hi Krissy! My nickname is Krissie too!I was diagnosed with IC in 96 and had been pretty much in remission (same way as you) until April this year. I was in constant pain, just like you are and it was not doing any good to my marriage.I found a great uro who is very understanding and he started me on Heparin treatment. I have been getting better although slowly. I can even say I'm having good days now.
    Go find yourself a better doctor girl!One that understands you and wants to treat you and one who cares! You need a decent treatment and not be on painrelievers 24 hours a day. There are drugs are more bladder specific, like ditropan.
    I hope you get some relief soon. Email me whenever you like: [email protected]
    Good luck!

    Leave a comment:


  • Chee-Chee
    replied
    Krissy, join the club. It hurts, it stinks, and it affects our lives. But I am willing to keep working and striving for hope. I too have had tears to shed but right now God is my strength. I hate this illness and I wish anything to remove the pain completely. But until they find a cure, we have to hold on together. Hang in there okay? Much love your way. <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

    Leave a comment:


  • vm
    replied
    &gt;&gt;&gt;they all have eleventymillion patients

    LOL!!! Love it!

    Glad you were encouraged by the support here. Yay!

    Leave a comment:


  • KrissyBaker
    replied
    Thank you thank you thank you all!! <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

    I have joined other IC groups before and was lucky if one person showed up every three days. Your welcome this morning made me cry. Seriously.

    Thank you so much for being so kind and supportive! I'm going to read your replies over again and then I'm going to take a long time to look over the site. I hope to get to know all of you a lot better and offer what sympathy I can.

    NB - Thanks for you advice about the doctor. I live in Chicago and have an HMO so the problem I keep running into is that none of the doctors have even heard of IC and they all have eleventymillion patients. I basically keep winding up treating myself. I show up and say "I've done the research, here's what you should prescribe" and they do. And I go on my way.

    The only meds I have tried so far (besides pain-control) is the Citricel that my nutritionist recommended. I stopped after a week. It feels like all I have to do is look at the stuff and my bladder fills with shards of glass. [img]mad.gif[/img]

    My new project I think is going to be finding a new doctor. Ugh. I'm looking forward to that like having my toenails pulled. [img]tongue.gif[/img]

    Kim - Thanks for the welcome and thanks for letting me know that you've found some relief and happiness! I'm sure I'll see you around quite a bit. [img]smile.gif[/img]

    Sparky - I did enjoy the toilet!! LOL! I didn't see that one the first time around! [img]smile.gif[/img] I'm going to go and find the book. Thanks for the recommendation.

    Sheri - I'm so sorry to hear that you're not feeling well. Still, I'm very happy for you that you have a good doctor and uro who are working with you. I hope you find relief soon!

    Cawaggi - Thanks for the welcome! I can't believe how many great people there are here. It just fills me with peace to know that there is a place to go. I'm sure I'll see you around. [img]smile.gif[/img]

    Mackie - Hi there. I don't know what the policy is around here, but I can tell you that around me you never have to worry about being a downer. If I can't do anything I'll at least always be ready with a "poor thing" and a sympathetic ear. Thanks for listening to me. Thank you also for your advice about the How are you??. That's the best idea I've ever heard about how to deal with that!

    Teri - I am so so sorry that your uro was such a jerk. That's just plain old malpractice. And I share your head-slamming about the DEA. I wish someone would explain to them that their job is to prevent abuse, not use. Thank you for making me feel so welcome. It gives me hope. And sometime soon I want to hear about all ten grandkids!!

    mayray518 - Thanks for your good wishes. I hope we all get better. I'm praying daily that I'll wake up and read in the paper that there is a miricle cure.

    Donna - I'll look at the IC Handbook that you have the moment I'm done with this reply. Thanks for making me feel welcome. I have major concerns about my GP as well, I'm just waiting quietly and rallying my energy to go doctor searching. How come it's when folks are feeling the most sick and helpless is the time when we're expected to organize referrals, think of treatments and deal with surly technicians? Rediculous. Thanks for saying hi!

    Jo - <img src="graemlins/hi.gif" border="0" alt="[hi]" /> backatcha! I hope to get to know you soon!

    Again, thanks for everything everybody. I'm feeling more hopeful than I have in a long time. <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

    Krissy

    Leave a comment:


  • JAF
    replied
    Hi Krissy,
    Welcome to the boards. Yes, this disease can be a B**** somedays. I have been having a couple of days myself this week. But, as the others have said there will be good days and bad ones. Keep coming back and you will learn a lot and have plenty of support.
    <img src="graemlins/hi.gif" border="0" alt="[hi]" />
    Jo

    Leave a comment:


  • ICNDonna
    replied
    Welcome to the IC Network. I know you'll find a lot of support and information here. Have you found our Patient Handbook? It's on the "Browse Our Site" pull-down menu at the top of this page. Are you following the IC diet? Many people with IC find that one step to alleviate most of their symptoms.

    If you have concerns about the physician you are seeing, I suggest you seek a second opinion. Having a physician who will work with you to make you comfortable is, in my opinion, essential to the wellbeing of any IC patient.

    Some physicians are reluctant to order pain medications --- but many will make referrals to pain specialists so you might make that request of your physician.

    And please let us know how you are doing.

    Sending healing thoughts,
    Donna

    Leave a comment:


  • mayray518
    replied
    Krissy and all the other new ICers, you will eventually get better. Through the help of these boards we can give each other advice and support. I feel so bad for all you young people out there who have it. For everyone really, but the idea of someone being so young. I am praying for all of us

    Leave a comment:


  • Teri
    replied
    Welcome KBee <img src="graemlins/hi.gif" border="0" alt="[hi]" /> I was being treated by the same junk uro for 10 years....had complete trust in him. After a customer of mine bring in an article of IC was the straw that broke the camel's back....I took the article to his nurse and asked if this is what I had and when I left the office I know I spent at least an hour in the parting lot bawling like a baby. For two reasons, because I had IC and because he had betrayed be. Welp, after finding out that he did't treat the pain of IC he was dumped REAL quick. Got an new one, a lady and I loved her so much and she was so knowledgable about IC but she also had the fear of the pain medication (thanks to our govenment) Okay, now I am going to one of the top uro's in our state. Guess what!!!!! He has the same fear of the DEA <img src="graemlins/banghead.gif" border="0" alt="[banghead]" /> <img src="graemlins/banghead.gif" border="0" alt="[banghead]" /> <img src="graemlins/banghead.gif" border="0" alt="[banghead]" />
    There were so many days, nights, mornings that I was positive I'd end my life. Then, I ended up with a godsent of a uro who KNOW how crippleing IC can be for us pain patients. He has worked with me since November with my pain issues and when I see him on Tues, we have some more work to do.
    Your 30 vicodin was what I was limited to with the next to the last dr so I saved them for the weekends so that I could be productive with my grandchildren.....sometimes they are the only joy left in my life and it just kills me to see the down slope I've made from the 1st one to the 10th one.....those 10 grandbabies are a clock to me and they reminds me daily of the things that have been taken from me......
    BUT!!!!!!!!!!!!! It is our responsibility to keep trying. To keep going to those new dr's who are willing to work with all of our IC issues, from the urgency/frequency, the pain, the depression AND the lack of sleep.
    And, I have learned, the quicker I change dr's the easier it is because there hasn't been a relationship formed so it's easier for me to walk away.
    For you first few weeks here it's probably going to be very hard for you to take in all of the information and read the postings from other ICer's....take your time, we aren't going anywhere.
    Not all of us are sick every day.....some of us get a good day thrown in here and there (I think that's God's way of telling us we have to stick around cuz we never know what we might miss [img]wink.gif[/img] )
    Please make yourself comfy....ask all the questions you need to ask. Cry, vent, what ever you need to do.

    Again, welcome to our wonderful family <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

    Leave a comment:


  • Mackie
    replied
    Hi Krissy,

    Boy, you surely did speak to me tonight! I thought twice about posting because, mentally, I feel just as worn out as you do right now and I don't want to be a "downer". So, instead of going on about how much this sucks (which it does), I will tell you two things I have learned:

    1-- All of us here know what it's like (unlike the rest of the general population, including our friends), so this is the place to come to for understanding and support.

    2-- These periods of depression (speaking for myself here) tend to wax and wane, so I know that soon, I'll feel better, even if I don't feel great. You'll see that we all take turns here comforting each other when it's needed.

    There's a lot to be said for having someone around to simply just validate our feelings and tell us it's okay to be ****** off. Today was one of the days where I was really upset and angry that I'm not "Normal" like everybody else. Why it took me almost 4 years to get here is beyond me, but I'm finally here. This feeling will dissapate and, no doubt, come back again to bite me in the butt at some point in the future. However, you'll never know when having this disease(s) will allow you to help others. And when you do, it gives you this feeling that maybe there's a reason for it all (besides making you feel like you-know-what all the time!).

    As far as people asking, "How are you?"...Well, I am a teaching assistant, so I go back to school in September. Last year, I swore I was going to go in with a pin that said, "Do not ask me how I am!" (I didn't) Gee, ya think I was a little bitter? So here's my new technique for the first day of school seeing everyone again..and it works! When someone says, "Hi! How are you?" I put on a big smile and say, "How are YOU?!" And that way, I never have to answer the question. It's much better than feeling like you have to lie, trust me.

    Anyway, hang in there and keep us posted on how you're getting along...Take it one day at a time (I swear, I should follow my own advice, lol)..

    Mackie

    Leave a comment:


  • Cawaggi
    replied
    Welcome Krissy. I'm fairly new here too. I find that I check the board several times a day just to have contact with people who really understand and care, not to mention I have learned alot from others' experiences. I hope you find comfort here also. <img src="graemlins/hi.gif" border="0" alt="[hi]" />

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  • SheriG
    replied
    ..Hi Krissy....I am still new to IC myself, but do know what you are going thru..I am in a major flare right now, and have been for about 8 weeks now...it just sucks, for lack of a better word. I am lucky to have a Uro, as well as a primary doc, who are both very supportive and helpful. I am still searching (with my doc) for just the right combination of meds that will keep me sane and comfortable...I have tried many pain meds, none of which I have been helped by...so we press on, pain and all, hoping to get thru another day! I hope first that you can find a doc who will understand your symptoms, and treat them, so you start feeling better soon...My primary knew so little about IC (and readily admitted it) that I actually copied different parts of the ICN site and gave it to him...maybe this would be helpful to you..Anyhow, best of luck to you, and I hope you feel well soon... <img src="graemlins/hi.gif" border="0" alt="[hi]" /> Sheri

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  • Sparky
    replied
    Hi Krissy! <img src="graemlins/toilet.gif" border="0" alt="[toilet]" /> (thought you might enjoy the toilet lol)
    What can I say I feel your pain.
    I'm sure we all do here. The life of IC certainley has it's ups and downs.(and I don;t just mean up and down going to the bathroom lol.)
    Remission/flare/remission/flair/ect........
    The different meds all work differently for everyone. This works for me and that works for you...then neither work for either of us anymore and we have to start all over again.
    It is very frustrating not being able to do what you used to do. So, now you have to find other things. Explore things and learn. This is a new chapter in your life. Make the most out of it you possibly can and it won't get you down as much.
    There are many good books the ICN has links to.
    I have also been reading (checked out from the library) a wonderful book called "Living well with a hidden disability."
    Author: Stacy Taylor
    It has been very helpful understanding that not only IC patients but so many people have issues similar to us. It will help you figure out how to deal. It has many work pages so if you want to purchase you can through Amazon.com or any bookstore chain.
    Good luck Girlfriend....and remember we are all in this together.

    Leave a comment:


  • vm
    replied
    Krissy, welcome!!! <img src="graemlins/hi.gif" border="0" alt="[hi]" /> You sound so cool. But very frustrated, too. I hope you are able to find a good urologist who understands this disease and is up to date on effective treatments.

    I started this journey about a year and a half ago. After getting a good combination of 4 meds. I feel really good now. Like, fairly normal 90% of the time, but due in large part to the medication combination that works for me, for now.

    Welcome again and you have come to a great place for information and support. Hope to see you around!

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