20 with IC and Severly Depressed

[DawnsRuby19]

I have been diagnosed with IC for about a year and a half now. I don't know what to do. I have always been a very active person, and for the past year and a half I have slowly gotten worse and worse with all the different treatments that I have undergone. At this time last year I could be in a car for about 30 minutes without having to urinate and now I can't even be in a car for more then 3 minutes at a time. As you can imagine it makes going to work very difficult. I feel as if I can't do anything I enjoyed doing before I started having the symptons of Interstitial Cytisis. I can't run, for moving relatively fast makes me have to urniate, I can't go for car rides, or be a plane for long periods of times. I am scared of leaving my house for fear of not being able to have access to a restroom wherever I might go. I hate going to my DMSO treatments because it is far away from where I live and my pharmacy doesn't always have on stock all the different kinds of medications I need to take on a regular basis. I am just at my wits end of what to do. I feel so alone. My family doesn't know how to treat me with this disease, and they don't understand why I am so depressed. They try to make me feel better by inviting me to go out and do things with them, but in all reality it hurts my feelings so much more because I know I can't do what they are inviting me to do. Such as going to the drive in movie theaters or for a bike ride or a walk. I even took a medical leave from college because I couldn't even sit through a 45 minute class and my teachers were getting upset by my leaving to use the restroom so frequently. Please give me some advise!
-Crystal

[kelly McC]

Hi Crystal,

I am so sorry... I also miss alot of family outings and car trips are out of the question most of the time. My advice is dont give up hope there are many treatments available and many once they find the right combo are able to enjoy themselves. I have been going almost 3 years and still have hope. I have lots of bads days but I do get a few good days which has given me some hope. I would try to find a pharmacy is your area that can keep your meds in stock. Are there any IC support groups in your area? just a few suggestions. I am sorry your school was not more accomadating to your needs. Is it possible to get medical notes and discuss it with the school?Take care and hope your feeling better soon,
huggs,
Kelly

[Katrina]

Hi Crystal! :welcome: to the ICN! I am sorry you are suffering so serverely from IC at this time. I am also extremely sorry that it has changed your life so much. I know IC can make doing many thing difficult and some things impossible. I recommend learning as much as you can about the treatments of IC and choosing what is best for you and the life you want to live. Maybe more alternative methods would soot you better.


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?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.

http://www.remedyfind.com/hc-Interstitial-Cystitis.asp

Let me know if there is anything more I can do to help you. I hope you feel better soon.
:kiss: :kiss:

[XoChelsey03Xo]

I'm sorry that you have these symptoms. I'm 19 and have IC also. I understand what it's like being so young and having IC. I also have problems with different things. However, your seem so much worse than mine. I send my prayers you way. IC sucks the fun out of life. Chelsey

[Sarojini]

Hi Crystal :hi: and :welcome: to the ICN!!

I am sorry to hear of your difficulties with IC. I understand the difficulties with the car; I've had trouble with car rides too and I find that one of the most frustrating parts of being an IC patient! I definitely feel your pain, and there are times where I've had to stay home and not do things because my bladder has be acting up.

The others have already given you some good advice. I'd like to add that since you seem to feel you are getting worse despite treatment, perhaps it is time to sit down with your doctor and discuss that fact. It's good to let your docs know what you think is working and what's not, and to have periodic re-evaluations of your treatment plan. Perhaps there are other things you could be trying that would help, for example.

Good luck :grouphug: and I hope you start feeling a little better soon!

[Ginny]

Hi Crystal,
I'm sorry you are struggling so much. I was 29 when I was finally diagnosed. I am 51 now.
You have reason to be depressed about having IC and all the limitations from it. Have you thought about taking antidepressents?
It's good that you took a break from college. It does not mean you will not go back.
A pain specialist is another idea. It not, a Urologoist that will prescribe pain medication. They are hard to find.
I have always had problems with people understanding my illness. Family members also. They can not see IC so they can't see that it is hurting you. The ones closest to you will see it because they see the daily struggle.
Ginny

[SharonA]

:hi: Crystal and :welcome: I am so glad you found us. You are not alone, honey. You now have all of us to help and support you. This is an amazing place. I do recommend that you spend some time reading the information available to you here. It is very important that you get an understanding about this disease and what treatments are available. Go to the Websites that Katrina gave you. Take your time...there is so much imformation that it can become overwhelming if you try to do it all at once. Become an informed part of your Health Care Team.

It is very common for family and friends to not understand IC. After all, before you came down with the symptoms, had you ever heard about it? I know I had not. It is up to you to become your own best advocate. Let them read the information here...maybe even some of the posts from the very wonderful and supportive people here who live with this disease every day. They are my own personal heros. :)

[Wimpers]

:angel:
Crystal- It isn't easy getting ill with a new diagnosis. People that are HEALTHY don't always how other's are, untill they are in our shoes. Actually going to Dr.'s can be a ginny pig--trying to find out "what is wrong with you" :yikes:
I thought the Depression was for the only CRAZY :dizzy: NOT TRUE.
Have you talk to your Dr. about your deal of depression symptoms? I didn't know what to do "10 Years ago". After a major depression---Strokes-Liver Transplant----etc...... Suicide was in mind.... I did get on medication for depression.....alot of people have.
There can be side effects with all medications. Believe me I was so healthy earlier---you never know what next. I would be good to make a diary---about various emotions-- & consulte a Doctor--they won't put you in a crazy house-----get you back on your feet! :bow:
TAKE CARE----NEVER GIVE UP! :)

[ad8123]

Hello and welcome kelly, I am sorry you are ahving a rough go of IC. Family and friends are tricky I have been diagnosed for 1 year (in two days) and been sick for about two years non stop (with IC) not everyone is going to "get it", I am sure you can see that. I finally printed stuff out for people to read, started keeping the ICA dlyer with me (for those that want to know). I had to read the Ic info to myhubby (he would not read it on his own) and I made him talk with my urologist about what IC is and how it is effecting me. Friends are difficult, some get it some cannot handle the changes it makes in your life. I feel like in the last year my life completly changed and I am still changing too, adjusting to my new limits.Maybe this applies to you or maybe not but sometimes you have to tell your md's NO! If something is really not helping you, or is causing you more stress and anxiety then seriously consider why you are doing it. I finally had to tell the MD's NO to several meds that just continued to cause me problems and I am better for it. I think maybe it made my md respect me abit more. keep a record or daily log if you can so you can see what the treatments and meds do to you, I was suprised to learn that a food I though was helping me ended up causing urgency and pain 30 min after i ate it (had to give it up ). I wish you all the best, keep posting evrybody here is GREAT, and so understanding. I usually bring my IC problems here, just easier to talk with people that get it.
Angela

[ICNDonna]

I agree that you should talk with your doctor about your feeling depressed. Taking a low dose antidepressant can help in two ways --- it helps you "feel" better, and it interferes with the pain receptors in the nerves so you actually have less pain.

Warm hugs,
Donna

[ICNJess]

Hi Crystal,

I'm 21 and have been dx'd for a year and a half or so, but have had IC my whole life, and suffer with a few other diseases that go right along with IC. I know right now things seem overwhelming, but everything will straighten out once you learn how to handle your IC and all. I hope you are even one of the people that go into remission! Hang in there, and remember, you are not alone!!!

Hugs,
Jess