I kept searching and hoping that one of these doctors would give me the answer's that I needed. One half of me was very happy knowing that I wasn't dying of bladder cancer, and the other half was hoping that I was. I know call me crazy, but it was just the way that I was feeling at the time. Its hard walking around in pain all day without knowing why, but it's harder dealing with the pain and no one believes you actually have it. Getting up every morning was the least hectic part of my day. I could stand getting in and out of the bed each day and night, I just couldn't stand having to use the bathroom every few minutes or every hour of the day. I couldn't do anything, and no matter how hard I tried I couldn't get anything I needed and wanted to complete. I felt like my life was slipping away each and everyday, and to make matters worse I felt like every time I used the bathroom a new piece of me died.
I became tired of the situation I was dealt with and I really didn't want it anymore, so I gave up hoping and believing that all the pain I was feeling was even real. I started to doubt myself and questioned my own mental health. All these damn doctors and not a single answer. What pissed me off the most was that the Urologist, that repaired my bladder didn't even have one for me, and he put it back together.
"How can they not know what's wrong with me?"
I asked myself this question over and over and over again, until one day I decided I didn't want to ask myself anymore question.
So I went back to work and pretended that nothing was wrong with me since it was easier for me to believe that I was still normal. Let me rephrase this, not as normal as I was prior to having my bladder repaired.
"Why God, Why Me, what did I do to deserve this, I don't hurt anyone, but some way some how some one always finds a way to hurt me?
I started to blame myself for having another baby. I believed that if I had not had another child, I wouldn't be in this mess to begin with. Honestly I don't know how true or wrong this is. I could only think about how I was feeling and hurting. I did however know that my family was hurting as well, I knew my husband was hurting from the loss of the wife he used to have. I was hurting because of the pain and the fact that my life to me was over. Sad part about this is apart of me will always believe it is. I know I don't want to, but what else is left to believe when your robbed of the life you know you could have had.
The pain, caused me stress, and the stress caused me to lose weight. I ate food every time I was hungry, I just kept losing weight. I didn't go back to the doctor the break was needed. While I continued working and continued pretending time just kept passing and even thought I kept working parts of me kept dying. Having to use the bathroom was not what I had wanted to do anymore, so I stopped drinking fluids.
I don't know what possessed me to believe that if I lowered my fluid intake it would stop me from having to relieve myself. Yes, yes and yes I was delusional, but for good reason. when the winter began the pain level went through the roof. Walking hurt, moving hurt, sitting down hurt, bending over forget it.
"MY BLADDER WAS NO LONGER IN LOVE WITH ME!!!"
So while on my two week break form work, I kept searching anyway even when I felt I was getting no where. I called the insurance company and they provided me with a urologist who was located not to far from Steinway Street and Newtown Road. I had all my of my medical records and that took a year for them to release them to me. I walked in his office with my head held very high that evening. upon complete all the documents in the new patients packet, I was called into the back by for an exam. As I sat on the examination table and handed him the forms and the sheet of paper where my pain came from. He sat at he desk in front of me and reviewed each and everything I wrote and went over the list of symptoms I provided to him in aw.
He turned to me and said nothing I was expecting or hoping for, but I am grateful to him for saying it. His exact words were " You experience these symptoms and pair right after having your bladder repaired? I just nodded yes, and then he turned to me again and said " Listen, I don't have a problem taking you as a patient, but I want to be honest here. I have been sued before, and I don't want to be afraid to treat you. I can treat you, but I will be nervous around you and I don't want to make a mistake."
My heart broke in that moment, but my pride was still intact so I turned to him and said.
" I appreciate your honesty and I can understand that you would be nervous of me. I honestly would rather not have you treat me, and give me the wrong medication or treatment based off your fear. I want to be treated by someone who is not afraid of me, but I can appreciate your honesty and you taking the time to see me anyway."
Sucks right, I know, but I didn't walk out of his office empty handed. He gave me the name and number to pain management specialists on Astoria who was available to see me later on that week. I sat in the office awaiting the doctors arrival, I was hoping and praying that he would be able to help me with the pain. When he came into the room he asked me lay down on the and proceeded with his exam. He came across the area, where I always experience pain and pressed down right over my bladder and as soon as I cringed he knew right away, what was wrong with me...
"Omg, he knew what was wrong with me !"
" Oh I see what happening her you have what they call Interstitial Cystitis, also known as Bladder Pain Syndrome".
He then printed out some literature for me to read, and wrote me a script for Gabapentin and Percocet. After he handed me the information on this mystery illness, he asked me if I was married, and encouraged me to speak with my husband and have him read about the illness. Well at first I didn't really read the information the way I needed to, and then one day I had to. This gosh dang illness was messing with my marriage and everything else that I loved.
With all this I felt like I had succeeded in getting a diagnosis, to me at this point anything was better than nothing, and better than pelvic floor dysfunction. He provided me with a name to another urologist, who didn't take my insurance, but had another one who did. I was waiting for my approaching appointment, and my two weeks was running out. I followed my sister to the doctor one afternoon and soon as I reached home I received that call from the HR Department, I knew it was coming and I was just hoping it wouldn't.
I sat down with the phone in my hand and returned the missed call that avoid answering. I pleaded and begged for her to allow me to continue with the rest of the week until I got a diagnosis, and she wouldn't and refused. She pretty much told me she had people lined up around the block waiting for my job, which I couldn't figure out why, but who cared at this time I didn't, I just wanted to be in less or out of pain. She sent me documents to sign so I could get my last paycheck, and a letter stating that I couldn't work with another logistics company for 2 years. I was hurt because I wanted my job and didn't want to lose it. I couldn't help but to believe that every which way I turned all I would run into was a wall.
I couldn't believe how I knocked down one wall and, ran into another.
"Yup, here I am again, hitting another wall."
Thanks for reading,
" Bladder Me Crazy" Interstitial Cystitis,
Until next post... Stay strong, keep fighting, and never give up!