newly diagnosed

[minnie_min99]

hi everyone,
my name is mindy and i am a newly diagnosed women with ic but in my case the doctor is amased with how young i am. I am only a 22 year old women who is getting her life started and i have a very severe case of ic. Because of it, my bladder has shut down twice for it and tried to poison my system within the last 6 months. I have made so many adjustements in my life that i feel like im a totally different person now since everything has changed. But i must say that I am lucky to have a great husband who is always there for me.
How do all of you deal with all the changes and such? How do you not let this effect your life in ways that you look different to others now?
Like i said, this is almost a regular thing now and my familly looks at me differently and don't know how to deal with me or what to say. Please help. It's very frustrating.
Thank YOu :)

[ICNDonna]

I'm glad you found us. We have lots of people who come here regularly and are in their 20's.

I suggest you read the information in the Patient Handbook at http://www.ic-network.com/handbook --- you'll find diet information there, as well as a wealth of other information about interstitial cystitis.

What kinds of treatments are you on?

My IC was diagnosed thirty years ago and if there's any one thing I like to share it is that there is life with IC. It may take a while to find the most effective treatments for any individual and which foods and drinks are a problem, but most of us do get there --- and most of us feel good most of the time.

Sending gentle hugs,
Donna

[traceann]

Hi! I just wanted to add my :welcome: ! Glad you found us! This is a great place for info, support, practical advice, you name it! For me, the adjustment came much quicker once I started hanging out here! It's easy in your "regular" life/world to feel really isolated and out-of-the-norm, it can get kind of lonely. But having this place to come to, can do loads for the spirit! Make re-entry back into my everyday life much much easier!

The more I have learned here, the easier everything has become, it's still no fun at all, but I seem to manage just fine most days! I do have the occasional mini-pity party, but I get it out of my system and I am ready for the world and the challenges again. :biglaugh: Hee hee, sometimes I wish the family would look at me differently, lol. I tend to push myself too hard sometimes because they can expect me to be "my old physical" self, because generally, I don't look "sick" for lack of a better term. It's hard for them to remember I have some limits now, I try not to have too many, but there are some that I just can't get around, lol.

Once again, glad you are here, and I hope to see you around the boards, ask all the questions you want, even what you might think are embarrassing, believe me, since I have been here -- I have read it all and asked my own! From food, diets, sex -- you name it, it's here somewhere, and there is always someone who may have a tidbit for you!!!

Hugs,
Tracey :)

[Katrina]

:welcome: I want to let you know that you are a not alone. This board is full of young women with IC. I was diagnosed at age 24 but had my first symptoms and test done at age 13.

As for the looks I think you just need to happily do what you can do. This is a letter to the "norms" about Fibromylagia. I like it though and feel we can change a few words to help it fit us. I guess I feel that telling people you would rather they be themselves...and speak openly to you. I have found that the looks die down with your family and friends.

I guess I think we just keep fighting to get better and better. Keep searching for your combination of treatments that gives you back your life. Allow yourself time to heal. Remember that IC is only one part of your life...it may be a difficult mountain to climb...but in doing so you are accomplishing something ammazing!
In the spirit of informing those who wish to understand ...
... These are the things that I would like you to understand aboutme before
you judge me...- Please understand that being sick doesn't mean I'm not
still a humanbeing. I have to spend most of my day in considerable pain and
exhaustion,and if you visit I probably don't seem like much fun to be with,
but I'mstill me stuck inside this body. I still worry about school and
workand my family and friends, and most of the time I'd still like to
hearyou talk about yours too.- Please understand the difference between
"happy" and "healthy". Whenyou've got the flu you probably feel miserable
with it, but I've beensick for years. I can't be miserable all the time, in
fact I work hardat not being miserable. So if you're talking to me and I
sound happy,it means I'm happy. That's all. It doesn't mean that I'm not in
a lotof pain, or extremely tired, or that I'm getting better, or any
ofthose things. Please, don't say, "Oh, you're sounding better!". I amnot
sounding better, I am sounding happy. If you want to comment onthat, you're
welcome.- Please understand that being able to stand up for ten
minutes,doesn't necessarily mean that I can stand up for twenty minutes, or
anhour. And, just because I managed to stand up for thirty minutes
yesterdaydoesn't mean that I can do the same today.With a lot of diseases
you're either paralyzed, or you can move.With this one it gets more
confusing.- Please repeat the above paragraph substituting, "sitting",
"walking", "thinking", "being sociable" and so on ... it applies
toeverything. That's what FMS/MPS does to you.- Please understand that
FMS/MPS is variable. It's quite possible (forme, it's common) that one day
I am able to walk to the park and back,while the next day I'll have trouble
getting to the kitchen. Pleasedon't attack me when I'm ill by saying, "But
you did it before!", ifyou want me to do something then ask if I can. In a
similar vein, Imay need to cancel an invitation at the last minute, if this
happensplease do not take it personally.- Please understand that "getting
out and doing things" does not makeme feel better, and can often make me
seriously worse. Telling me that I need a treadmill, or that I just need to
loose (or gain) weight, get this exercise machine, join this gym, try these
classes... mayfrustrate me to tears, and is not correct... if I was capable
of doing these things, don't you know that I would? I am working with my
doctorand physical therapist and am already doing the excercise and
dietthat I am suppose to do. Another statement that hurts is, "You just
need to push yourself more, exercise harder..." Obviously FMS/MPS deals
directlywith muscles, and because our muscles don't repair themselves the
wayyour muscles do, this does far more damage than good and could resultin
recovery time in days or weeks or months from a single activity. Also,
FMS/MPS may cause secondary depression (wouldn't you get depressed if you
were hurting and exhausted for years on end!?) but it is not created by
depression. - Please understand that if I say I have to sit down/lie
down/takethese pills now, that I do have to do it right now - it can't be
putoff or forgotten just because I'm out for the day (or whatever).
FMS/MPSdoes not forgive.- If you want to suggest a cure to me, don't. It's
not because I don'tappreciate the thought, and it's not because I don't
want to get well. It's because I have had almost every single one of my
friends suggestone at one point or another. At first I tried them all, but
then I realized that I was using up so much energy trying things that I
wasmaking myself sicker, not better. If there was something that cured,or
even helped, all people with FMS/MPS then we'd know about it. This isnot a
drug-company conspiracy, there is worldwide networking (both onand off the
Internet) between people with FMS/MPS, if something workedwe would KNOW.-
If after reading that, you still want to suggest a cure, then do it,but
don't expect me to rush out and try it. I'll take what you said and discuss
it with my doctor. In many ways I depend on you - people who are not sick -
I need you tovisit me when I am too sick to go out... Sometimes I need you
help mewith the shopping, cooking or cleaning.I may need you to take me the
the doctor, or to the physical therapist. I need you on a different level
too ... you're my link to the outsideworld... if you don't come to visit me
then I might not get to see you.... and, as much as it's possible, I need
you to understand me.


http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

http://www.ic-network.com/forum/showthread.php?p=90935#post90935 Newbie kit from the oldies to the newbies
http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post.
The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.
__________________

[Dixiefireball]

:hi: and :welcome: to the ICN family. I was dx at 26 and was told i had it for many years before my new uro found it.
a lot of young women get it saddy. also men and children are getting dx with i.c daily.
I.C doesn't care how old you are.
please check out the link they gave you above its a great one it has the i.c diet in it treatment plans etc. its a great place to start.

please keep us update on how you are remember we are here for you and we do care.
sending you hugs and prayers
Rhonda

[Sarojini]

You've already gotten some great advice --so I'm just going to :welcome: you to the boards. You've found a wonderful group of people to help you through the rough times :)

[Amyinagony]

:welcome: Mindy,
First of all WELCOME to the best IC support team in the WORLD!! Here you will find the best support you will probably ever find anywhere else.
That is so wonderful that you have a loving supportive husband, that's a HUGE plus. Give yourself time, you will learn how to adjust, and it will just become 'everyday life' for you. I try to compare it to being a diabetic, there's no cure for that, it's matter of controlling it. As for your family adjusting to you with this....give it time. They sound like a wonderful caring family who doesn't like to see you suffer. As they see you adjust to this new form of life...they too will adjust. My immediate family...(mostly my Husband, Mom and Sister) were much like you are saying about your family. Good luck, and know that we are here for you. :grouphug:

[melanie626]

I have found this site to be so helpful. I also have a therapist...I remember when I first met her, I had some other stuff to work on, but she wanted to talk about my IC...we never did, until I had my first really big flare and it has been very eye opening to see who is supportive and who isn't, because like they say, "you don't look sick"- so I have been lucky to talk to her about it. It takes time and sometimes it is really hard and frustrating, but hopefully you will feel better...so many of us are able to live feeling pretty good most of the time...

Welcome:)

[hisjenn]

welcome, Mindy.

the way i cope is this... i believe that everything in life can either be your reason or your excuse.

and while we have many reasons to make IC our excuse, i prefer to make it my reason. my reason for getting up and finding out what is going on with my body, so that maybe, just maybe, my report to my Dr. will make a difference. i know many people are reading this and going... "oh puke! whatever! shut up!"... cause i know it's SO hard to read positive words when you just can't muster those same feelings. i try very hard, tho, to find 5 good things every morning, and every night to keep my spirits up.

i have pain, that is my biggest symptom... severe pain... so i have to lay around alot... so i find ways for me and my kids and my husband to do together.

i read alot... and i save links and i email information to my mom and dad and my sisters so that they can all understand what i am going thru more... i can't wait to copy and paste the letter about fibromyalgia to them!! (thank you, Katrina!)

but most of all, after a year and a half, in the last 2 months i have learned the biggest lesson of all. i have finally stopped pretending. when i feel bad, i tell someone when they ask. i don't pretend to feel good. when i hurt, i tell someone when they ask, i don't pretend to be pain free. when i am just having a crappy day, i tell someone when they ask, i don't pretend to be in a good mood.

i think this was extremely important for me and my mom. She would call, and because she lives 2 hours away, i would tell her i was okay, and everything was good so that she wouldn't worry, then when something would come up about "do this or do that" and i said i couldn't, she didn't understand because "well, you said you were feeling fine". i was trying to make everyone feel better about me not feeling bad, and end the end, it just caused confusion for them. and now that i have been sharing information from the web with them, they understand that even tho i have a good day today, that it might be a bad day tomorrow

that has helped so many of my relationships. hopefully this will give you a way to improve things with your family... i am so glad to hear you have a great support system in your husband... good for him!! and you *smiles*

[minnie_min99]

hi everyone and thankyou
Wow! I didnt think so many of you all would respond but thanks and the info was very good and appreciated. As for me and my treatment, i am on a special diet and I have to take Medication everyday or else I am as sick as a dog and on top of that I have to sleep or at least try to sleep on my stomach. The reason for this is because my bladder has shut down and tried to poison me twice now in the past 4 months. It is very painful and scary when you face the end of your life that way but I have tried to get through it. The thing I find the most hardest is the way I view life now since it was almost taken twice. I live it for now and not for the future. I am not concerned with saving up or buying a house, I just live for now. The reason I do this is because I wanna try and live as much as possible before something realy does happen, and I figure that this wont work if all I do is save for a house and all of that. So I just live it for now and spoil myself a little. I believe that this is the main problem with my familly that I have mentionned. They are unable to see that no matter how many times I have tried to tell them. But I also belive that they have a hard time with it since they dont understand. Well I hope this will let you all know a little more and I look forward to many many chats and and advises from you all.