Interstitial Cystitis

For those of you who know me, I was diagnosed with ic about a year and a half ago. I still only know a fraction of what it is exactly, but I'm still learning. You are in pain almost 24/7 but you have to suck it up and deal with it. Because people get so tired of hearing about how you're always in pain, that you don't feel good. So your basic response when someone asks how you are becomes, "I'm fine," or "I'm okay."

Most people when I first got diagnosed were all like, "you're just doing this for attention," or "it's all in your head." When actually its not. Most people believe that unless you can see whats wrong, then it's all in your head. Us who have ic look fine on the outside, but on the inside, we're struggling. But we put a smile on our faces and do the best we can with what we've got.
Doctors know very little about ic but they are trying to do the best they can.

Basically I've heard ic being described as "all your nerves and insides are dipped in gas and set on fire." That pretty much describes what all us ic'ers go through 24/7. We may look fine on the outside, but inside, we're a mess. Our insides are on fire and messed up and cause us to become inflamed. Some days we may feel pretty good, so we try to do stuff around the house, but we end up pushing ourselves and we once again become inflamed. For me, inflammation means my pants no longer fit, I have trouble doing even the simplest tasks like cleaning the bathroom or washing dishes because my feet become swollen or hurting.

Ic can also cause more problems to develop alongside ic. There is no cure, its a life sentence of pain and finding new ways to deal with it. And if you don't have health insurance like many people with ic that I know, the doctor visits and the medication to try and help with the pain can become nearly unbearable, but we do what we have to to try and be as comfortable as we can.

I know many nights I lay awake and just stare at the ceiling because I can't get comfortable or I'm in so much pain that I can't sleep. It's just kind of a long never ending cycle. I feel great so I try to do something like clean the bathroom and I end up overdoing it and having a flare. Sometimes they last hours, but I've had flares that last weeks, where I am just laying on the couch and trying to make the pain go away.

I want you all to think for a second. Think of all your favorite foods. Pizza, pasta, chocolate, anything with even a hint of tomatoes. Now think how you'd feel if you could never eat that stuff again. Tragic right? That's what its like for me. All my favorite foods I can no longer eat. Pizza, frozen dinners, anything with any tomatoes at all, rarely any fast food. Basic home cooked meals cooked just the right way so that I don't become more inflamed. Occasionally I'll eat chocolate or chips and salsa and instantly regret it because I wake up the next day hurting so badly that it hurts to get out of bed.

When I first got diagnosed, I figured okay, its like having a utI 24/7 I can find a way to deal with it. Nope. Not like that at all. You have trouble sitting or standing for long periods of time, you get dizzy, your body seems malnourished from missing out on some of the foods your body needs.

I have met many amazing people through support groups who have helped me understand. But I have made two great friends who are also going through this and we support each other. We are far apart in place and age, but none of that matters. We are there for each other to help each other when we can with what we can. I just wanted to say thanks to everyone who's been there for me through all this. And those who left, you've only made me stronger.

And if you read this and think this is all to get a pity party, you're so wrong. This is to get awareness of ic out there and help people understand. You don't have to have something on the outside to make you have pain. Most people with ic don't have any physical signs outside of their body.

We strive to do the best we can with the limited knowledge of ic that there is. Medications, treatments, they're all on a trial basis, just hoping that some day they will work and help you. I myself am still struggling to understand ic, with all the different types of medication and the amount of pain I deal with daily, but I have some amazing friends who help me understand and are there for me

lets get the message out there and make people aware!!!

Wish You Could Stay

As I sit here, thinking back to my childhood and the words that have been playing in my head for two days on a constant loop, I feel like this is all a dream and if I don't talk about it, maybe it won't happen. Maybe this is all just a really bad dream and i'll wake up and everything will be okay.

Two days ago I found out in the worst way (at least to me at the time), that my grandma's breast cancer came back. This time it's overtaken her lungs and liver. I don't even remember what I was doing, but I got a text from my friend asking if I heard about my grandma. I told them that I just talked to her but I don't know what they mean. Then they proceeded  to tell me that she has breast cancer and only has three to six months to live.

So of course I told them to stop lying to me and that our friendship is over if they are lying. I called my grandma and she said it was true. That she was hoping to tell me before someone else did. But she told me she accepted it and that I shouldn't be sad. Right now, I guess I am in denial. That she won't die if I don't become okay with this or if I don't talk about it. Foolish, I know.

Recently we started talking every day. Mainly I call her with random thoughts or questions. It really hit me tonight that soon I won't be able to do that anymore. Every time I have a question about anything I ask her, not my mom. And now when she goes, I won't have anyone to talk to about the random things I think about.

She's been like a third mom to me (my birth mom is out of my life and my dad remarried so I have a second mom) since I was ten years old, I lived with her till my seventeenth birthday before moving back in with my step mom and dad. I have so many memories of those years I spent with her. A lot of little things. But i've been told that it's the little things that matter.

I'm just trying to accept this like she has, but I have no idea how to start. I guess it's true that you never realize what you have till it's gone. But she's not gone. She's still here for as long as her cancer lets her. But I realize now how badly I treated her in those years I lived with her. And I can't take it back. I just have to learn to deal with it. Things got a lot better near the end of the time I lived with her, but it never really got better until I moved away, then moved back after graduation and got married. Then I had a traumatic experience and since then we've talked daily.

This is just so hard. I can't seem to stop being upset. And I know I only learned about it a few days ago, but at the same time, I feel like I won't ever be able to get over losing her. We've been through a lot together when I lived with her and even when I moved back and the things I went through, she was there. I really wish she could be okay again and stay around for a long time. I'm really gonna miss her. More than anyone knows. I love you, grandma.