Fiercely Independent Pam

Category: Health

  • Financial Woes: Being Disabled is Expensive

    Having a small “pity party” for myself. I’ll get over it before I even publish this post, but like anything else, I know the best thing I can do is get these feelings out. A year ago, I was faced smack in the face with one of the biggest surprises of my life. I was being “tossed out” of my community. On paper this was due to my medical needs being more than they could meet, however I was not asking them to meet them. The actuality was that I was too aware of their missteps and failures for myself and other residents. In hindsight, the move to my current community was the best thing that could have ever happened to me! The process of moving and settling in was quick and somewhat painless, but it came at a cost- a financial cost that I never quite recovered from.

    Fast forward to today and I continue to struggle to stretch my social security payment as much as possible. I do not qualify for any extra help, because ironically I worked so much, my social security payment is just over the poverty line to be able to qualify for additional services. I never thought I would be here and after all, I have a Master’s degree in a needed field and loved working. I worked hard to pay off my student loans that were minimal because I made good choices about tuition and earned amazing scholarships.I am a good example for anyone who believes you just have to try harder and if you are struggling financially, it ,must be your fault. This is simply not true.

    I am confident that through my hustles and creativity, I will find solutions. after all that’s what it means to be fiercely independent! The medical bills, caregiver support, transportation, and unexpected expenses pile up quickly. This doesn’t even include the financial burdens of “wish list” items like mobility devices or other products not covered by insurance.

    I am not here to beg for money or anything like that, just to bring awareness that services for our vulnerable populations needs to be protected. I am not making a political statement at all, just remember that the disabled population is the only group that anyone can join at any time in their life. You never know what curve balls life will throw at you. We are all one accident, one healthcare scare, or aging into becoming disabled. Disability brings a whole new financial challenges I was not prepared for in the least.

    So, what is the solution? For me, it’s a matter of keep hustling. I am determined to meet my financial needs through lots of means. Sponsors, bartering, and even begging are not beneath me at this point. I realize I am lucky, I have a lot of skills to bring to the table and most of the time, I am able to muster up the energy to use them. There are far many more disabled people who aren’t able to do this to the same extent. We all have to rely on our “tribe” the friends and family who meet us where we are despite our difficulties.

  • 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.