"What would you do if you were in pain all day?"
"What if no one understood, or wanted to even listen?"
" How would you feel if no one believed your pain exists?"
I went against the doctors advise and went back to work a little shy of a year after having my daughter. I didn't know what else to do with myself at this time. I knew in my heart that working was not an option for me, but I also felt that if I did work, things would get better and go back to normal. The Urologist had become my best friend and so was a Chiropractor. I swear I must have been in both their offices at least one a week.
What can I say, seeing them became a part of my daily routine. Truthfully, it was more of a job than my job was a job. I spent more time in the doctors office than at my desk. I clocked out from work more times than I could clock in. I didn't have the best job in the world and I know it wasn't going to turn out to become my career, but I enjoyed having something to do besides sitting in the house all day, after dropping my son off to school, and my daughter to daycare.
I hoped and prayed that the doctor was wrong, when she told me I would have to go out on disability. I cried in her office after she uttered the very word, and I instantly saw my life flash before my very eyes,but I didn't want to give up yet, I wanted to continue working. I went back to work for a few more weeks. Each and everyday, same sharp stabbing pains. My pelvis felt like knives were slowly being dragged around in every which direction. My bladder throbbed constantly and the pressure, oh don't get me started on the pressure, it just wouldn't quit.
I was sitting at my supervisors desk during a training, when I suddenly had the urge to pee. I tried to hold out as long as possible so I sat there quietly and, patiently waiting until she finished talking.
As she continued talking, I continued to listen, until my ears shut off and all things around me became silent. I kept nodding my head praying she wouldn't ask me if I understood what needed to be done. Honestly I had no clue. Everything around me was noting more than a blur, and the only thing on my mind was how long it was going to take me to reach the bathroom from where we were sitting.
" Please, oh please be quite already!"
I imagined screaming this out at the top of my lungs, and she was done. I stood up and practically ran towards the rest room. I was so nauseous that I actually hoped to throw up, just so they could send me home. Standing in the bathroom with my head over the toilet... my eyes filled with water. I just couldn't move. I didn't know how. It sucked that I had to keep what I was going through to myself. I didn't even dare tell my husband, and it was not because I didn't want him to know, I just didn't know how, or where to begin.
I left that day, with pain in my body and hurt in my eyes. No one ever saw it nor, did they even notice. I kept my head up as high as possible everyday and went to work as much as I can. The pain just kept coming, and the more I worked the stronger it would become. One evening, my husband and I were sitting in the car, and he let me out at the house because he knew I had to pee. I was hurting so bad, that I fell into the bushes on my way up the stairs.
" I hope you laughed!"
I sure did. Okay, well not at this very moment, I was a bit embarrassed,but happy at the fact no one saw, but me. I don't even think my husband noticed that I fell into the bushes... "ha, I can see the look on his face."😱😱😱
I'm just kidding, I probably would have balled my eyes out and passed out from all the tears. My supervisor never really ever understood, why all I only ever ate for lunch was a cup soup and crackers. My apatite was gone, even toothpaste was an issue. I couldn't do it anymore, so I requested two weeks off of work, without pay. I went hunting for every single urologist that I could find willing to treat me. I had a very hard time, finding doctors willing to take me on as their permanent patient, but no issue finding a doctor who would want to treat me for a second opinion. I saw a few who said they saw noting wrong, with me. there was no issue, and no reason to their understanding to why I kept having the pain. I kept consulting with the urologist, who did the repair, and even he said the same.
" How come no one seemed to understand what the hell was wrong with me"?
I began to believe that it was all in my very own head after awhile, and then I was referred to a doctor at the Smith Institute for Urology. I was praying he would be able to give me an answer in which he did, just not the one I was hoping for. I walked away with more hope this visit because I felt like I had reached some where. I was scheduled to go back the next following week for a cystoscopy.
I've had my fair share of these and no way was I looking forward to another, but I did it anyway with the hopes something would give.
" I have good news for you"!
Happiness, finally! I hoped. My hopes were up way to high, and shot down as faster.
"You don't have Cancer and your not going to die".
"Oh, no! Nope I didn't have the big "C" !!!
Apart of me was kind of hoping to have it. 'Why?" because at least when you have this, you get the sympathy and treatment you need. Most important, the respect and,compassion and no one judges you or, calls you lazy. oh and the one thing no one ever says...
wait for it!...
"IT'S ALL IN YOUR HEAD!"
Confused, right? your not alone in this.
" Bladder Me Crazy" Interstitial Cystitis,
Until next post... Stay strong, keep fighting, and never give up!