Taking Care of Business

Do you remember as a little girl wanted to be a big girl one day because you watched something on tv or you walked through the big girl clothing section in a store and thought one day I’m gonna wear that? I can remember one particular moment in life were we went to Target and my younger brother was going into potty training. He got to pick out Blue’s Clues underwear as a motivation to want to wear them instead of diapers which most kids either dread or look forward to based on personality. What seemed to be a special moment for my brother didn’t come for me until much later as my lower extremity disabilities also affected my bladder. I wore diapers for much longer and it didn’t phase me until I noticed that the boys got “special” clothing that I wasn’t receiving yes, this is a weird comparison to someone but I noticed a lot more than most, and one day decided to ask my mom when I could have big girl underwear. My mom was able to transition me to pull-ups which had at least Disney characters on them which made me feel a little bit better, but it wasn’t the same and soon my family and I would be meeting with several doctors to determine what was next for me in this part of my life. I can remember going to Children’s Mercy Hospital in Kanas City a whole lot more and meeting with a Urology team to do tests that would determine what could be done. If I thought Ostomy appointments were uncomfortable now I had someone else trying to help me understand what peeing was actually like and how it should be. As the reader you are either on board with this and relating to this or you are reading this and thinking, “Wait you can’t feel when you need to go?” Yes, until the surgery I never had the urge to hold my bathroom needs or felt the need to run to the bathroom! Crazy Right? The surgery that was being planned was to help my bladder be able to hold output and for the sensation to kick in so that I would be able to know if I needed to go. All these things sound easy, but again for a girl who never experienced anything like this it wounded awful and on top of that they explained to me that it still wouldn’t be the same as other girls but I would need to learn how to self-catheter to relieve.

In the beginning, it sounded so basic and an easy fix in my head and all I wanted was another chance to feel “normal” or like the other girls in my life. At nine years old I went into the surgery not fully understanding the commitment my family and I were about to make. This surgery took all day and when I came out of surgery I didn’t notice anything that different at first. As my recovery continued I noticed I had a small surgical whole that had a catheter in place and it would drain whatever my IV was giving me, and at first, it was no big deal and then I realized that I would need to learn to walk with this and take it in and out eventually! A couple of weeks passed and I started to feel an uncomfortable feeling inside that I couldn’t explain it was the sensation of my bladder giving me signals of when I would have to self-cath and when that moment came it did not take long before I’m calling my mom to assist. I wish I could say that after my recoveries from many surgeries, I was a pro at learning new medical devices and self-care, but no I was not! The new material scared me and the fact of something sticking out of my body for a time was haunting and very uncomfortable to feel but there was no turning back and with lots of time and hard love from my parents I eventually learned to do the bathroom on my own. It was never going to be easy, it was never gonna be comfortable, it was never going to be something I just excepted but with time I did learn the blessing of it and the journey was well worth it. There were many ups and downs with it with a urinary tract infection today where my mucus would be so thick inside we would go to the ER just to get it unplugged and just start all over with it. Surgeries and tests were done to make sure it was working properly and that I wouldn’t get bladder stones or things wouldn’t close up on me and that was a story in itself but I won’t go into all those details. All of this can be rather heavy but it is something that needs to be talked about and more focused on for so many people not just for myself and that what’s needed to be said is that there is no shame in going to the bathroom with a catheter and if that’s how you need to live life then make it to the best of your ability and learn it so you can do things that teens and young adults do. Now, let’s get into the practical and how now I live with it day to day with an unknown and now-known bathroom accessory.

When starting this catheter life I wasn’t really into carrying my supplies and so I always had my mom stick my stuff in her purse. One day she came home with a few makeup bags and said pick one! She said it could be my bag with my catheters and other supplies needed for when we go out and we need to grab it quickly. But how do you just leave when you are in a group or how does my mom get my attention when it’s time to go some days I was on a schedule to make sure I never got too full. My mom wanted to respect my privacy and so she came up with the code abbreviation TCOB which was code for “Taking Care of Business” To this day we still use this abbreviation when speaking to each other or are in a setting where we can’t get the message across. It takes me a few extra minutes but thankfully some perfectly healthy girls take forever in the bathroom so I never worry about taking my time! Throughout life, I’ve learned some tips and tricks that help me feel safe, private, clean, and above all able to use the bathroom in various settings. Here are a few ways I’ve been able to adapt my lifestyle to make sure I have all I need and to have the ability to self-cath to feel free in my environment!

1.) Makeup Bag- I take my makeup bag everywhere with me and it carries all the supplies I need to make it smooth.

2.) Fanny Pack- If I’m going somewhere quick and don’t want to carry around a purse or backpack with my makeup bag I switch over my supplies to a fanny pack to make it easy, hands-free, and unnoticeable.

3.) Mini Hand Sanitizer- Cleanliness is so important whenever introducing something into your body so I always have a mini hand sanitizer with me to make sure I can clean my hands right before doing it. I use a wheelchair so even when I wash my hands in the bathroom I still have to touch my wheels before entering a stall so I double my clean.

4.) Gel Storage- In my makeup back I make sure to have some gel/lube to help things stay smooth and I’ve found travel-sized gels in different stores to keep it small and concise. Some medical companies sell mini gel packages so all you do is open the lube and apply then throw it away.

5.) Makeup Wipe or Gauze- When entering the bathroom and you need something to put your lube on DO NOT use the public toilet paper! So many hands have been on that and you are about to apply something internally and that could lead to so much infection. I use gauze when I have it available or if that’s too hard to access then I use a markup remover pad that you can find where the cotton balls are! Super cheap and easy to add to your to-go medical bag!

Reader with a similar disability that cannot remove your catheter here is what I have to say about that. For the first several months of my catheter story, I had to keep my catheter in place to make sure I could heal and so for that part of life, I can slightly understand the exposure and uncomfortableness of that. I can remember using blankets and a backpack to keep it as hidden as possible because I wasn’t used to so much exposure, but as I reflect on that now being a young adult I want to say this. Your personality, identity, and beauty are not attached to those tubes! Do not be ashamed of what your body needs to live and continue on life. I encourage you to challenge yourself to be bold and open about your situation and help others become normalized around it. I do not show mine to the world to see because I want attention but if I can make one medical thing less scary or misunderstood then more can be opened to us instead of looked away or taken away because of something we can’t explain or are uncomfortable ourselves to communicate. My body isn’t what I thought or dreamed it would be, but if I didn’t have my surgery and learn to cath then I would still be stuck in adult diapers. So many times I would look for tips and tricks out there but then and now there are not a lot of written, videoed, or spoken hacks out there because we continue to be afraid of what it might look like for us. Yes, we pee out of a tube but it is better than being trapped or unable!

For my readers without difficulty in this area here is my encouragement to you. This is a lot of information and sometimes my writing can be a little TMI (Too Much Information) but hear my heart when I say is it too much? When someone longs to know what life is like for another individual this is the place you can learn and accept others. Have lots of grace for those who deal with this daily as it is a none thinking thing like breathing for you and others it takes intentionality, time, and courage to step out and accept that bathrooms sometimes aren’t accessible or that it takes a few extra minutes to pee. My own family had to adapt but it didn’t take away the joy of going out or me having a coffee or tea even if it makes me pee more! I think we can all relate to that scenario!

So readers, take care of business. (TCOB)
Carry what you need to succeed.
Be confident in what you need to do.
Enjoy the Go!