Fiercely Independent Pam

Tag: Chronic Illness

  • Accessibility Rocks: Being a Tourist in Your Own Town!

    I’m catching up after an amazing weekend with a friend from out of town. There is nothing that can do as much good as spending time with a friend- genuine, quality time listening to each other, sharing stories over coffee and yummy food. This is true soul food. The only thing that is better than friend time, is baking in the glory of the sun at the ocean. And when you combine the friendship and ocean, something magical happens- especially if accessibility needs are met.

    One of my favorite things to do is to play tourist in my own town. Living in a tourist destination makes this super easy to do. Myrtle Beach is pretty accessible, but it can still be difficult to navigate in a wheelchair at times. This past weekend, we cruised around town and took in the sites of old Myrtle Beach as well as enjoying some quality meals. We rode the giant SkyWheel, took the tourist pictures (and bought them), and even did some surf shop shopping. The greatest accomplishment of this past weekend, was making it to the ocean. Not just looking at the incredible views that the Atlantic Ocean gives us, but getting down on the firm sand and feeling the warm of the sun-kissed sand in between my toes.

    This feat was accomplished because we were able to “rent” a beach wheelchair at the awesome state park. The beach wheelchair has giant balloon tires that allow it to move smoothly over the dunes and sand. The park also rents power beach wheelchairs during the season. These rentals are free but on a first come, first serve basis. I look forward to trying out the power beach wheelchair come Spring.

    Accessibility is about making things fair for everyone. Universal design helps everyone. The Mobi mat that covered the sand over the dunes- parents with wagons or strollers benefit using these too. The ramp to get to the beach access without steps helps the senior citizens who want to see the ocean as well.

    It’s beyond time to make universal design the norm. Accessibility should not be the outlier in a park. Why can’t all dune cross-overs have a mobi mat and not stairs? It’s not a budget issue, as building stairs is an expensive process too. Accessibility shouldn’t cost anything extra for the user who requires it. That is, in this example, the beach wheelchairs are free for use and included in the admission/parking cost. Being disabled is expensive enough and lonely enough, we shouldn’t have to pay extra or put our loved ones out to be able to access places.

    Whenever I have someone in town or helping me navigate the world through my disability, I realize it’s an opportunity to demonstrate the world from my view. That is, for example, what it feels like to have to use the ramp in the back of the building instead of the front door. Or to have someone talk to you without making eye contact or to be stared at. It’s a chance to see how people do not move out of the way when you are traveling in a wheelchair or how the stupid end-cap displays in a store are a giant nuisance. It’s a lightbulb moment that is otherwise lost.

  • Fifty Pounds Gone: My Journey of Weight Loss (This Time)!

    I’ve always struggled with my weight. I honestly do not remember a time that I wasn’t overweight, except a brief time that I worked hard to lose a lot of weight and quickly gained it back. I have always lived by the idea that it was better the maintain than to yo-yo back and forth and feel trapped by my weight.

    Fast forward to the last five plus years of chronic high dose steroids, diabetes, and a slew of health issues, my weight ballooned to a ridiculously new high. For the first time, I felt uncomfortable in my own body, my weight impacted everything and definitely did not help my health issues.

    Unlike the last time I made a major effort to lose weight(about 15 years ago), I didn’t seek out a program or system to follow. I was lucky, something found me. My orthopedic’s office signed me up for something called Prescribe FIT. This is a 1-1 program where I was matched with a health coach and complete virtual visits weekly. They also sent me a bluetooth scale that links directly to their incredible app.

    I use the app daily to weigh in, report on goals set, and can even enter water and nutrition daily. My weekly virtual visits with Anna are great, we check in on weekly goals, struggles, and brainstorm new approaches. It’s a good balance between self-sufficiency and ongoing support.

    Today, I reached just past the fifty pound mark and losing 20% of my starting weight in early May! I am also about eighty pounds down from my max, a little over a year ago. I am quickly looking forward to my next short-term goal of being “just” overweight and not obese. I am struggling to find clothes that aren’t too big and that feels wonderful! For the first time in a very long time, I am wearing “regular” sized clothes and not plus sized. Other people are noticing and that too is a great feeling.

    I will continue doing what I am doing, I think i’ve found my stride in this journey. I appreciate the support from Prescribe FIT, my health coach, Anna, my healthcare team, my family/friends, and everyone who is helping cheer me on along the way!

  • An Un-Modest Update on My Stupid Bladder!

    Now that I have “mastered” the art of self-catheterization, it has just become part of my everyday (well every 4-6 hour) lifestyle. I am successful outside of my own bathroom and having few issues with the process. The biggest point of frustration with my bladder and the process is having to be always prepared. I have a small cosmetic bag full of any necessary supplies. Most of the time, I remember it if I am going somewhere without my wheelchair(I keep it on the back of my wheelchair).

    In the spirit of losing all modesty, medically speaking, I also want to disclose my other issues with what I like to call, “My Stupid Bladder.” I am dealing with incredible urgency issues- like a 3 year-old- who just left the house after being told told to use the bathroom before getting in the car, but of course did not have to go- issues- BOOM! They can be painful and because of recent events, I cannot move quickly to get to the toilet all the time. If I am out of my apartment, it complicates matters even more.

    Additionally, despite not being able to successfully urinate on demand, my stupid bladder leaks. This I believe is the worst symptom, as it is unpredictable, unpleasant, and embarrassing. I have found good success with my favorite Lil Helper reusable pads and “system” These usually prevent leaks from being a bigger problem, as I stubbornly refuse to start bringing a change of clothes with me places. I highly recommend them for both urinary and period issues. SO much more comfortable than disposables and such a better option for the environment. They are super easy to “deal with and clean.”

    This past Thursday, I went back to MUSC for more bladder studies and an appointment with my wonderful urologist. I completed a urodynamics video study that required not much more than my lack of care for modesty. Basically, I sat on a converted table-to-chair where various catheters were placed to record bladder “strength” and other measurements. I then received a large amount of fluid into my bladder that contained contrast material. During the filling, various x-rays were taken of my bladder and vitals were kept.

    The nurse recorded when I reported that my bladder was feeling full and would need to urinate soon, needed to urinate immediately, and feeling immense pressure to urinate. She then told me to try “going” which of course was unsuccessful. She then cathed me and I felt immediately relieved!

    After cleaning up, changing, and getting settled into a regular room, the urologist came in and started talking. The study showed that although my bladder can hold a large amount (thank you teaching), it cannot empty on its own. So in addition to being “a floppy bladder,” it also shows signs of detrusor under-activity (essentially the muscle used to empty the bladder is weak). He recommended trying an additional medication to help with all my symptoms as well as starting botox treatments for my bladder.

    Botox would be administered via the urethra and would involve many injections each treatment(30-50). None of this sounds like fun and would need to be repeated every six months or so in the urologist’s office. The upside would be that If/when it works, I should be completely dry! So that part is very exciting! I am signed up to start in 6-8 weeks.

    So there it is. There is nothing glamorous about any of this and yet the self-catheterization process is in a weird way, empowering. The learning curve was steep and medical professionals seem to always be impressed that I mastered it. I see it as one more thing to keep track of, that is needing to always be sure I have enough supplies on hand, do my part to prevent UTI’s, and keep smiling!

    I will be sure to keep you updated on my bladder, and I was about to apologize for the more “graphic/medical” approach to this post, but feel strongly that more information needs to be shared about this “private” matter. Like I said, my modesty is out the window, anyway! Please reach out to me if you have any questions, especially if you are going through bladder issues.