Another Change of Plans: An Interstitial Cystitis Update

c444d2f3-a5d5-4ad0-aec0-270988d8f685I need yet another venting session.  Yesterday I received the phone call that I had been dreading but expecting.  My cystoscopy with hydrodistention is being canceled due to COVID patients overloading the hospital and staff.  Multicare is in a staffing crisis and my procedure is considered to be elective.  Now I have to wait for all of this chaos to cease to get rescheduled.  I am angry.  I am hurt.  I am disheartened and disappointed.  I was actually looking forward to this being the procedure that was going to put me into remission.  I’ve spoken to so many different women that were all helped to varying degrees after having this particular procedure done, but now that hope has to sit on the shelf for awhile.

00543b2c-ba34-47f0-89d4-c0819c3d10c5After enjoying more than a month without bladder pain, my flare has come back with a vengeance.  I’ve spent the last few days laid up in too much pain to move – again.  I’m so absolutely sick and tired of being sick and tired all of the time.  If it’s not one thing, it’s another in my life.  I never catch a break and nothing ever gets any better!  I wake up every single morning with the highest hopes for each and every day and before I’m all of the way out of bed, my body is already sending out pain signals.  I don’t hardly get a moment’s rest.

The part of having Interstitial Cystitis that most people don’t talk about is the mental effect of battling such a painful disease.  I struggle with crippling depression and anxiety from this disease.  Everything that you eat or drink can potentially cause a flare, so you become apprehensive when it comes to food.  The fear has caused me to almost stop eating altogether, which has lead to massive weight loss this year.  Of course, my eating issues are compounded by the fact that my esophagus doesn’t function properly due to Scleroderma, but the stress of eating possible trigger foods certainly does not help in the least!


In addition to dealing with the stress of Interstitial Cystitis, my personal life is falling apart.  I’m losing friends and becoming more distant with my family.  I’m spending less time taking care of myself and more time worrying myself to death about what we’re going to do next.  Our living arrangements are up in the air at the moment, adding more stress to our lives.  Financial struggles have reared their ugly heads as well.  Most people are struggling through this pandemic, my family is no different.  Just keeping our heads above water seems nearly impossible right now.

615ac898-f7d9-40a0-a411-436ac1496eaeLooking at everything that I’m struggling with in life, it’s no wonder that I feel like giving up half of the time.  This life with unending pain does not hold much interest for me.  I can assure you that the only reason that I am still living and breathing right now is the fact that my kids and husband would be lost without me.  I know that’s not the best reason to stick it out and fight for my life, but damn it, that’s the only reason I’ve got right now and I’m gonna run with it!  I’m blessed with a husband that dotes on me, day in and day out.  He’s constantly thinking about me or doing things for me.  He takes great care of me, that’s for sure!  My boys also put their all into helping me out around the house with various tasks and chores.  It’s not easy for them having a sick mom, and we’re all kind of struggling with it in our own ways.

Just pray for us y’all…

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