Why am I so open about my health and what exactly is "IC"?

I've gotten a lot of feedback about how im "brave" to talk about my never ending health issues and mental and emotional health because of it.

Well I'm here to say thank you but I wish it wasn't something that downgraded someone. There are more people out there who have these conditions than you know. They just either don't want to talk about it or haven't had the right time to open up and talk about it.

Whether its a physical condition like breaking an arm or a head injury like a concussion, mental and emotional injury is real.

My mom says I was a really happy little girl. Most peoples physical illness causes a secondary illness that relates to his or her mental and emotion state and lowers a person's wellbeing and livelihood.

For me, the pain I suffered and was unable to get help right away for, caused me to have secondary conditions like depression and anxiety. I have social anxieties for a whole other reason but I doubt I'll ever talk about that openly. I do have my limits surprisingly.

I digress. I want to help people. No one deserves to suffer like I did. And im not saying that because I feel "sorry" for myself. I deserve to be angry and upset about how adults around me, failed me. It took a long time for me to forgive my parents. I went through a phase of anger. I didnt show it at first because I didn't want to talk about it, but I truly felt betrayed in a sense. I was inpatient and fatigued and in pain already, I didn't want to go and cause even more issues in my life.

Forgiveness. As I have gotten older I have realized that my parents had their own things going on and I had to remind myself they are humans and to find peace I had to find a way to forgive.

My main reason for being open about all of this is because I didn't know anyone who was going through what I was going through. Im in my mid 30s now and I didnt have online support groups or YouTube for information, or dependable internet to find good advice. I had to leave the room when I was getting online with the screeching phone dialing. Remember how terrible that sound was and how impossible it was to sneak onto the internet? I was obsessed with sailor moon and I read all the background stories, etc. I would frequently wake up from pain and want to read but nope. That damn screeching would wake up my mom and that wouldn't be good. I know you get me.

I didnt have a name for my pain until I was 18. When I was 18 I went to my gynecologist and I just ended up crying. I was extremely emotional and exhausted and having "flares". So what exactly is interstitial cystitis?

Interstitial cystitis is essentially an ulcer affecting the lining of the bladder. Some have spots of ulcers, and some who have severe "IC", the whole bladder would be affected. How i got diagnosed is considered inhumane now. For reals.

Imagine having this condition. And doing a cystoscopy in clinic with no anesthetic. The idea is to first insert a thin but still as wide as a pencil tube into the urethra. Yes, we are all adults here. (This is the way you see inside the bladder.) And then the doctor would make sure to drain the bladder. The inhumane testing for IC was this: he had two solutions of liquid. One is water and the other is potassium. Yes. Potassium. The patient is not told which solution is what. Depending on how you respond is how you are diagnosed or not. If you are in pain with the potassium test solution, you are more than likely to have IC.

I remember this test vividly. Even after nearly 20 years. I started to cry and nearly fainted from the pain. I even yelled, to my doctors horror, "GET IT OUT OF ME!". I am certain his other patients heard me. I didnt feel bad about it though because shit, now I have a huge flare up and I couldn't sit properly the rest of the day. The pain lasted for nearly a week. It was the worst flare I had ever had. But, I had an answer to my pain. I had an answer and I wasn't crazy. I have had a legit painful condition for nearly 10 years with no idea what was going on.

The doctor said, "your bladder is as red as an apple. I could see the nerves and veins and you have no lining to protect them, as far as I can tell". He apologized for the pain I suffered from. So whenever I drank something or ate something, whatever ended up in my bladder, my nerves and veins were exposed to it.

After the procedure I couldn't pee for nearly an hour because my body was resisting due to me knowing it was going to sting to let the fluid out. I personally don't think he thought I had IC. He gave me reading material and what I shouldn't eat that could cause flare ups. No 🍅 tomatoes, and nothing citrus. I love oranges. I would sit with my dad and watch a movie while we peeled oranges 🍊, and ate them...duh. Nothing spicy or juices. Especially not cranberry juice. The one juice everyone was telling me to drink.

Because I was determined to stop the pain to the best of my ability I lost about 15 to 20 lbs within a 6 month period. I ate the blandest foods. I also started the only FDA approved medication to treat IC, Elmiron.

I took it for 2 years, 3 times a day. I started to develope a rash from the sulfa ingrediant so I had to stop taking it and just crossed my fingers to let my body try to heal the rest on its own. I was so scared. I started having flares again. Not nearly as bad as I used to before elmiron and my diet change but I started getting scared I would go back to that. I wouldn't had been able to handle it if I did. I dont know if I would still be here if I had not been diagnosed. My life was wake up in pain, fall asleep in pain, and at its worst, dreaming in pain.

My mental state could not be fixed nearly as fast as my physical self though. I was still hesitant to go see a doctor for any reason. I had this constant fear I would be judged before actually checking me, like I had before I was diagnosed with IC. And 20 years ago I had to educate the doctors I saw for other things, what it was. Its only just the past 10 years or so it became a better known painful condition.

My PTSD started to get worse because when I felt good, like I said in another post, I was scared I would start having that pain again. So I could never really enjoy my life. My life starting around 11 or 12 was dictated around this painful illness. It wasn't really mine to have dreams or decide what i wanted to do in life. I had a dream of doing archeology, but I knew it was just a dream...nothing more. I wouldn't even try to make it work.

For those who don't know me im obsessed with Indiana Jones. I have a huge poster in my office of the last crusade my boyfriend printed for me. Anyway, if I had my way and nothing stopped me I'd probably be digging in another country looking for long lost artifacts. But with a painful bladder condition that is more random than not, I could not chance going into that type of work. So I became a pretty good office worker. Thankfully computers came natural to me, especially since they became the future for everything.

Decorating ain't my thang

I think I will stop here and if I think of anything else I'll add it later.

I hope you find comfort knowing you are NOT alone.