- 2 oktober 2016
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- Categorie: Contributors
WARNING: This post may be all over the place, but I just need to get it out.
So when I turned 18, I got married four months out of high school and have been married four years this year in October. When I first got married, everything was amazing. Then one day about four months later, I started having symptoms of what I now know is Interstitial Cystitis and Endometriosis as well as some other minor diseases. It started small, and then got worse very fast. I would wake up crying and could not get out of bed due to the pain. I was so scared.
Interstitial Cystitis and Endometriosis is treatable, but there is no cure. It can become life threatening but it is rare.
Anyway, I spent months going to doctors and getting poked and prodded to the point where I felt like a pincushion. Finally we got my diagnosis. I was devastated. I felt like my whole life was over. I was put on many meds to try and treat it, and instead of treating it, it seemed to make it worse for me. My symptoms became much worse and for two years it got so bad I now need help up the two stairs to our apartment, sometimes I need help walking in general.
Anytime I walk anywhere now even if it just to take out the trash, I come back and my stomach is bigger. I keep getting people asking me when I am going to have a baby. That is how big it gets sometimes. Its called a flare. I flare from the simplest things. Food, walking, sitting for too long, car rides, etc.
I spend most of my time in bed and the times that I am up and not sleeping, I am sitting on my side of the couch with a heating pad/Frozen ice bottle, pain meds, ect. I take two-four baths a day just to help loosen my muscles.
When I told my mom about my diseases, she said the worst thing I think you can tell someone with any kind of problems. ‘You were not sick when you lived with us (I only lived with them for a year, My grandma raised me from the time I was ten till I was 17 then I lived with my parents a year before getting married and graduating.) and then you moved out, got married to someone we never met, and suddenly you are sick. I do not believe you.”
This just broke my heart. I finally am trying to see it from her point of view, but at the same time, it still hurts. I mean she could go forever not believing me and I had to do something. So I sent her the pictures of my bladder and stomach from the surgery to her and tried explaining what it all meant. She just said she would have to take my word for it.
I have always tried SO hard to get my parents approval. It became an obsession as a kid, sadly. But lately I have finally decided that if they don’t believe me, it should not affect me. I need to take care of myself and not worry about whether they believe me or not. But I do need support. These diseases are not easy to deal with, its emotionally, physically and mentally exhausting. I know my Grandma may not believe me, but she is always helping me find other alternatives like natural medicine to help. She is way into that stuff since she has battled cancer twice.
She never told me she didn’t believe me, all she ever said is if I try things that are natural it will help my pain, it won’t cure it but it will help.
When people say have you tried this or that, it gets me so angry. No matter what I try I will not be cured. But they see trying this or that as a CURE. And whenever I take the two minutes it takes to put on a nice shirt over my sweatpants and a little makeup, people say the rudest things. Someone told me this just the other day “I KNEW you were lying about being sick! You just want attention so you say you have two incurable chronic illnesses.” This hurt way more than I wanted to admit. I finally found my voice and said that if they really thought that, then I do not need them in my life. Then turned and walked away.
I am an IC Warrior
Credits photo: Fe Ilya