I’ve had a hectic few weeks and have gone quiet on here. I’d apologize for that, but sometimes we all need to take a break and that’s exactly what I’ve done. During the last few weeks I completed a few of the bladder instillations that my urologist wanted to try on me. I made it through instillation #5 before the doctor gave up on them. They have not helped my pain in the least and caused an infection and multiple flares since beginning them.
I woke up this morning with one of the worst bladder flares of my life. None of my pain medications were working and it was getting worse and worse as time wore on. The pain was so bad it took me right off my feet and my poor husband had to pick me up off of the floor more than once today. He was so worried that he called over to my urology office to see what they wanted us to do – if anything. My doctor wanted me to come in right away to check for an infection and to discuss further options. Once there, it was decided that the bladder instillations are not beneficial in my case and should be stopped immediately. The doctor is recommending that I have a cystoscopy with hydrodistention done as soon as possible, with the hopes that this will stop my bladder pain and flares. I have agreed to have this procedure done with the understanding that this is that absolute last option that I will consider. If this procedure does not help, I will give up and accept pain management as my fate.
Having interstitial cystitis has really started to take a toll on me. This past weekend I had a bladder flare so bad that I actually contemplated suicide. This is something that very few people in my circle know that I dealt with recently, but keeping it a secret does nobody any justice. In my moment of darkness, when I was all alone, I somehow found the strength to text with the Suicide Prevention Line and got through the crisis until I could get my husband home from work to help me. It was one of the most terrifying crises of my entire life and I am so thankful that I was able to pull through and live to see another day. I share this only with the hopes that it will make someone else feel a little less alone, that it will help someone else facing the same situation as myself.
Chronic pain is a Hell that many people don’t even realize exists. It has turned me into a completely different person than I was 4 years ago when this autoimmune journey began for me. I’ve lost some of my light. I don’t enjoy the same things that I used to do. I’ve lost so many friends and family members to my chronic illnesses. People that I thought would be there with me forever hardly even say a word to me or acknowledge my existence anymore. It’s sad, but it’s just another reality of living with an autoimmune disease in this society. People don’t know what to say to you, so they say nothing at all and eventually forget all about you. I harbor no ill will for those that have passed through my life and went on about their own. I recognize that my journey is not meant for everyone to be a part of and I’m becoming more and more okay with that. I spend more time appreciating those that make the time for me to be a part of their lives, and less time worrying about those who didn’t make it into this chapter of my life.