Fiercely Independent Pam

Tag: Don’t Let the Hard Days Win!

  • 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.

  • Appearance Matters: When Chronic Illness Steals Your “Look!”

    No matter how hard I try to pretend that my appearance doesn’t matter to me, I always know it does. During the pandemic, I was very sick. I spent more time in the hospital than home and had many rounds of tough medications and treatments. All of this caused havoc on my body and its appearance.

    I was on steroids constantly and not just a little Medrol pack or short course, but iv and high dose Decadron for months at a time. At one point I gained so much weight, so quickly that my stretch marks began to pull apart and tear the skin. The steroids allowed me to continue breathing and it was stressed to me that I needed them. I spent half my day on a non-invasive ventilator and sometimes the whole day. All of this took an amazing impact on my appearance.

    When you add on the complications of the pandemic- not really going anywhere or being able to get to a salon, the results were dramatic to my appearance. Besides the stretch marks, which I continue to battle with every day, my hair was thinning and falling out. My once thick curly/frizzy hair became baby fine and a simple act of brushing it or washing it, led to major loss. My eyebrows thinned out as well and became almost non-existent. I hated my appearance, but also was so proud of myself for surviving.

    Fast forward to October 23, 2020, I made myself an appointment at my favorite salon for a hair cut (shape) and color. I remember it was surreal to deal with the rules of the pandemic and wasn’t able to have it blown out or dried. A simple visit became a statement that I was going to “win.” Treatments weren’t going to hold me down and hold me back. I radically changed my appearance from a worn down- sick person, to a warrior, determine to fight my demons and not let the scars win. I chose to go red and loved the color change.

    Little did I know that I would eventually have to shave my entire head for brain surgery. (Click here for more about that). My hairdresser at that amazing salon was with me through it all! She is a perfect example of a hero without a cape.

    I will continue to not let the hard days win by ignoring my appearance when necessary, but celebrating it when possible. Today, I continue to fight with my hair- but love the curls God granted me and the wild, unpredictable nature of having curly hair.

    As for the stretch marks- I am at a loss. I have decided the best thing to do is embrace them as battle scars. They stand as a testament to all I have won! While not the convention of beauty, I find them amazing- a statement of what our bodies can do for us!

    The result of my beauty treatment at the salon- notice the awesome color, but also the crazy thin hair and hairline.