If you follow my blog, then you have likely noticed my absence. I haven’t written since I was last hospitalized around July 22nd after a stent removal left me extremely blocked (I was released a few days later.) If you’re unfamiliar with the story of my illness, all the information is here on this website missydeyo.com - I would so much rather you take the time to read that than ask me for a personal explanation. It is emotionally taxing to repeat this horror story over and over again. In short, I have been battling a kidney illness for two years. This major surgery on the 16th of August will be my 13th surgery in 15 months. Some of those surgeries have been minimal procedures and I’ve tried to clarify during each one, but most of them have been invasive and very painful.
To answer some questions, unfortunately I fall through the cracks of Ontario’s financial aid. In order to qualify for Disability, you have to have an ailment that will be affecting you for at least a year. Now that I live at my Dad’s house, the total household income, while we aren’t rich, is too great for me to qualify for Ontario Works. I’m just so glad that I’m not living in my apartment anymore, although I miss my independence. My situation is such that it has been a string of very unfortunate events that has rendered me incapable of working until it is fixed. Every time I’ve had a procedure, the doctors have hoped it would be the final one, but so far I haven’t been that lucky! I just kind of wanted to clarify that because I know some people have been asking.
Please forgive me if I haven’t responded to your inquiries about how I am. I know you all mean well. The thing is, though, there hasn’t been one bit of new information to give you in the last few weeks. Since I last wrote, I had my nephrostomy bag put in. It’s just a drain bag that screws into your kidney. It’s been a lot less painful than some of the internal stents that I’ve had, but I have to admit that while I laughed a lot about it, by times I’ve felt pretty embarrassed. Oh well, though. My main goal has been passing the time. I couldn’t do my favourite summer activities like swimming or going for long walks, but I did manage to go bowling and just hang out with friends when I felt up to it. Anytime I’ve gotten to do even little things like seeing a movie or go going to dinner, it’s been thanks to the generosity of my wonderful friends. I’m very lucky to have them.
Like I said, I’ve been avoiding conversations about my health like the plague. I’m so, so tired of talking about it. And I don’t want to be, “Missy Deyo, that girl who is sick.” I just want to be me. I’m tired of feeling like shit and I’m tired of being broke. I would give anything to go to work, even if I had to wear a McDonalds uniform and ask if you’d like fries with that! Free time is a blessing - in moderation. You can only read so many books, watch so many movies, and find so many “free” things to do. I hate when people ask me how I’m feeling. It’s wonderful that anyone cares but the answer has been the same every day for the last three weeks, or the last few months, or the last two years when we look at the bigger picture: I. Feel. Like. Crap.
I don’t mean for this to be incredibly depressing. But if you want to be a help to me, make me laugh! Entertain me. Take my mind off things. Do anything but ask me about doctors or hospital visits or prescriptions or diet. Do anything but remind me that my life revolves around medicine. And please, I know I’m far from the only person going through serious illness, but don’t think that just because I’m open about this, that I’ll want to hear about every operation YOU have ever had in your life. I do care and I do hope the best for all of you, but this is one of the hardest times in my life when I really need someone to lean on… I can’t be your shoulder to cry on.
I decided to be open about this last winter, after a year of struggling with this already, simply because my entire life had to go on hold until this was over. It’s just way easier for you to understand who I am and where I’m at if you know. But if you REALLY want to help me, MAKE ME SMILE! Quote funny movies, tell me jokes, do anything to keep up the cheer! And that will be the best of all. The surgery on Thursday, August 16th is major one. The doctors will be making an incision across my abdomen, cutting through my muscle and cutting out the part of my ureter that’s damaged. Then they’ll reattach the ureter, put a long tube (stent) inside, stitch me up and hope it heals properly so my kidney will finally begin draining again. However, my kidney is so permanently damaged after everything that it will still only work 30-40% out of 100% and there’s a good chance for scar tissue and more surgeries. IF the doctors don’t think that procedure will work, they may take my right kidney out altogether, and that definitely won’t be the end of the surgeries if that happens. They’ll see how I do with just one kidney if they do remove it, but I’d likely need a transplant. Best case scenario, I’m looking at a week in the hospital afterward and a 2 month recovery. It’s got some big risks attached to it and the doctors have been trying very hard to avoid this.
So please, I know you mean well, but don’t say things like, “I just KNOW this will be the last surgery!” or “It’s going to be no big deal!” It’s going to be hard. And it likely won’t be the last. But while I will have tough days and hard moments, I’ll have an amazing group of people around me who will be making me smile and laugh and thus, helping me keep my head up. If you aren’t sure what to say, just hug me, or pray. And that will mean the world to me. :)
Above all, I’ll keep you posted here or on Twitter @miss_deyo or Facebook at Facebook.com/missdeyo so before you send me messages asking, check there, please!
I’ll try my best to write back as I am able but some days I just don’t feel up to it. Thank you so much for caring enough to even look into any of this, and I hope you understand where I’m coming from!
Lots of love,