Three times I have written complete blogs, read them, and deleted them. I want to update you on everything going on but I can’t figure out how to inject humor and levity to my current circumstances. I can’t find a way to explain where I’m at without it sounding like a bad cable movie that leaves you depressed and not at all entertained.
Which leads me to consider why you’re reading this blog anyway. Is it in search of entertainment and a laugh? I doubt it but if so, I don’t recommend this one. Keep scrolling. Is it because you’re in the depth of end stage IC and you’re looking for hope? This isn’t the right one for you either. Is it because you just love me and want an update and to support me? Thank you, from the depth of my soul. My dear, sweet friend sent me a series of encouraging gifs yesterday and I keep thinking back to one that said “I know I can’t stop the downpour but I will always join you for a walk in the rain.” That’s all I want from my loved ones and when they/ you give that without me asking for it I crumble from the weight of my gratitude. So I will give myself permission to just be honest and kind of just ramble in this blog. Thank you for indulging me.
Last I wrote, I was just about to try a new medication but I ended up having an allergic reaction to it and was never able to find out whether it could help me, then I went in for my kidney biopsy only to have it called off at the very last second when they found fluid in my kidneys (hydronephrosis).
I was devastated for a few days. Those two things were my last hope. The last chance of noninvasive treatments and finding answers to all the mysterious problems I’ve had in my urinary tract since I was in elementary school.
The next step is one that has loomed closer with every negative test and failed treatment. In 6 days I will go under general anesthesia and they will put nephrostomy tubes directly into each of my kidneys through incisions in my back. The theory is if the urine drains straight out of them it won’t have time to wreck havoc, reflux or retain in my kidneys. As soon as it’s made the urine will drain straight into bags, one for each side. So I’ll be walking around with THREE bags (a drain bag for each kidney and even though there won’t be much, if any, urine draining through my conduit I still have to wear my regular urostomy pouch too). I can’t decide if my new nickname shall be pack mule or bellhop.
It should be about a week of recovery from the procedure but if after that my pain is improved... or dare I hope... gone then we will know the conduit is the cause of all this suffering and we will move onto a permanent solution.
Ureterostomies. They will take out my entire urostomy system and make stomas out of my ureters (the tubes that normally connects the kidneys to the bladder). Unfortunately that means I would have two bags for life.
The alternative, however, is much worse. If the nephrostomies don’t work... they have no more ideas.
Which means no more tests, treatments, information, answers, and no more hope. It means labeling this my two most feared phrase... “chronic pain”. That makes the idea of two (or heck, even 5) bags not look so bad.
As usual my stress is getting ahead of me. I’m trying to just take it day by day but I’m constantly squelching one worry only to be bombarded with another!
May is equally my favorite and most dreaded month. It’s full of so much fun- some of my favorite people’s birthdays (including my own), Mother’s Day, the beginning of the sunny season in the Pacific Northwest, festive and easy holidays like cinco de mayo and memorial weekend. But... it’s also the anniversary of loosing my bladder (5 years ago) and my Dad (4 years ago). Also those things I love about May like sunny days and celebrations induce anxiety like nothing else does when my health is in a particularly difficult seasons.
How can I thoroughly celebrate my moms birthday when I can barely stay out of bed for a whole afternoon?? How can I hope to go out on Friday night for dinner and drinks for my friends birthday when the idea of wearing pants makes me whimper?? How do I make plans, much less execute them, to celebrate my mom and my mother-in-law on a sweet Sunday when I’m focusing so hard on only taking the bare minimum doses of morphine?? How can I bask in the glorious sunny skies and warmer temperatures when I can’t even find a comfortable position to lay in bed?? How do I celebrate my own Mother’s Day when most days I feel like I barely deserve the title?? How do I celebrate my birthday when I’m basically just celebrating another year of misery??
I do everything I can to not even glance out at the blue sky that seems to taunt me, I try not to notice the tan that my husband’s already getting, I don’t even open the weather app and I dread looking at my calendar. As much as I try and no matter how I feel, I cannot reschedule or stall these things from coming. I either have to drug up and fake it until I make it or I just have to miss out.
Maybe I should be cheerful as the day I get the nephrostomy tubes approaches, maybe I should have hope that this will finally be “it”, maybe I should be reveling in the time I have left that I can lay on my back... Instead I’m just worrying about not being or doing enough, anxious about missing precious moments with my family, and dreading the official surrender that is coming so soon no matter what happens.
I’m really trying to rise above, trust that God loves me as much as He says he does, and just enjoy what I can and accept what I can’t. It’s just so much easier said than done...
Thank you all for doing this life with me, for walking with me in the sun or the rain. I truly wouldn’t blame you if you gave up on me but I’m so thankful you haven’t!
Also, I want to publicly say happy birthday and Mother’s Day to my incredible Mom. In more ways than the obvious one, I wouldn’t be here without her. She keeps me going, she carries my burdens as if they are her own, she steps in when she needs to but steps aside when she can. She is my Mom, my sons Grandma, my caretaker, my nurse, my helper, my substitute... my true lifelong best friend.
