Fiercely Independent Pam

Category: Updates

  • IVIG, Home Health, and Trying to Control Timing!

    Today is my twice a month IVIG infusion. IVIG is used for many different reasons; I use it for my immune system (or lack there of). I have been doing IVIG for about three and a half years. Before this, I used to do my IGG via subq which didn’t involve using a central line or needing a nurse to monitor. Click here for a previous post that explains my Primary Immunodeficiency and treatment plan. All of this involves special planning and timing.

    Today again, I have a substitute nurse, actually I have two nurses because one is shadowing the other. It’s always interesting because nurses have their own ways of doing things. Nothing is wrong or right, just different. I also spent a good part of the morning working and practicing using my fistula.

    Timing is aways something on my mind. I want to keep moving forward, but it is essential that I remember that I do not control time, I have been waiting to use the fistula and get rid of my PICC line for over a full year. Today was another day of being reminded that I do not control time. The plan shifted some, but is still moving forward. I practiced sticking a fake arm and using good technique to secure and then remove the needle. I think I am still on track to have the PICC line pulled around Christmas, which is a BIG deal because it means I can finally break free from using Home Health services.

    Right now, because I have a PICC line and require nursing services from Home Health, I am limited in regard to other things. For example, since I use Home Heath, I am required to use them for PT/OT services, which tend to be not as robust as outpatient services. I also can’t order my urinary catheters through “normal” means because Home Health has to order them. This limits the type of catheters I can use and try. I am eager to stop using Home Health so that I can access other services.

    It’s easy to get frustrated with the timing of things. I want things to work out NOW! I am tired of waiting! Beyond getting rid of Home Heath, getting rid of the PICC line also means being able to shower without a cover on my arm and being able to swim if I want to. I have purchased stickers for my glucose monitor for various holidays that I’m not using because they would be hidden under my PICC sleeve. It might seems like I am whining right now but really I know timing is not in my control. Eventually the PICC line will come out and eventually I’ll meet these goals.

  • 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.