Fiercely Independent Pam

Author: Pamela

  • Catheter vs Power Wheelchair

    Well yesterday I finally did it- I’ve had some close calls and warnings but today I managed to run over my foley catheter and get it all caught up in my wheels. Spoiler alert- all ended up ok with a quick change of the bag.

    So, I was getting ready to load onto the bus for a doctors appointment and was so busy talking to people that I didn’t realize that my foley bag slipped off my foot plate (it was also hooked on at some point). I spun around and then tried to move to get outside and onto the bus when I realized my wheels weren’t moving. I had no idea what the problem was but felt the catheter tugging on my insides. WOW- I quickly realized that it was an issue with the catheter. I tried to fix i myself but couldn’t budge it and of course the 3-4 people that were near, were gone. The bus driver, my hero without a cape, was outside and I flagged him down by waving my arms ridiculously. He ended up on the floor to dislodge the bag, luckily the bag didn’t pop and was recently emptied. I went back to my apartment and changed the bag since it was punctured in a few spots.

    All in all, everything was ok! This experience was a giant serving of “Humble Pie.” My biggest takeaways were don’t take yourself too seriously and no matter how independent I think I am, I will always need some help.

    So now I laugh about this and pay closer attention to the foley falling off my foot plate. With some luck and good medical care, I look forward to the day that I no longer need the catheter. It really is slowing me down. I have learned that physical reminders like a catheter hanging out of me are harder to deal with than non-visible reminders. I struggled with this issue when I had my feeding tube.

    Independence is a great thing, but I will recognize I will always need some help. The level of help needed waxes and wains depending on my medical situation. I am experimenting with the amount of time I have caregiver support. Right now I was able to limit it to mornings only. My mornings are still kinda rough and I don’t want to spend all my energy preparing for the day and have nothing less for the rest of the day. I continue to try to pace myself better and enjoy being able to do more throughout the day without crashing.

  • Are you complex?

    I saw a reel today that essential asked the question, “Do you feel that the more medically complex you get, the less effort providers spend on finding answers for you?” It hit home for me, especially in light of my recent hospitalizations.

    It amazes me that providers tell you that you are on too much medication and then chose to prescribe more medication just to elevate symptoms. On top of that, some providers believe it is their responsibility to re-test to see if you “really” have a certain conditions. This most recently happened to me while inpatient in the hospital. I have secondary adrenal insufficiency caused by long-term steroids. I have to supplement with daily steroids and when I am sick, I require a “stress dose.” The hospitalist that had my case decided to withdraw all steroids and get a cortisol level to test to see if I really had adrenal insufficiency. Of course beyond feeling like absolute crap, my levels came back super low.

    I’m not quite sure why providers can’t take your medical history (documented by other providers) as truth, especially when it is complex and large. People do not get things like shunts, surgery, medical devices or even some prescriptions without having to prove their diagnosis. I am all for eliminating unnecessary meds or tests, but let’s not test just to test because you don’t believe someone can be this complex.

    The toll of having to prove yourself over and over is huge. It’s exhausting to not only redo tests to prove a diagnosis, but also the psychological impact of not being believed.

    We need to do better.

  • I hate being sick…

    I found this quote (pasted below) and realized it said so much of what I feel on a regular basis. Those, thankfully rare moments that I really consider where I am in life. Having chronic illnesses means always finding a balance between obsessing about getting better and pretending your life is normal or in other words, embracing the reality versus ignoring the facts. Most of the time this is for self preservation; nobody, including myself wants to hear about the struggles all the time. I often tell people that my full-time job is taking care of my health and that isn’t really a joke.

    When you couple chronic illness with invisible illness, and add in rare diseases into the mix, you are faced with a ongoing problem of being believed, but almost anyone, after all no one should or could have all of this. My list is crazy(simpliefied): Primary Immune Deficiency, Asthma/COPD, IIH, RA, POTS, Adrenal Insufficiency, Type 2 Diabetes, Hashimoto’s Disease, Migraines, anemia, SVT, pituitary tumor, kidney stones, urinary issues, back/neck/hip arthritis, endometriosis/ovarian cysts(now a non-issue due to recent hysterectomy), severe allergies, history of PE and DVT and depression/anxiety. I am always aware and thankful for the other scary stuff that I have been diagnosed with and then proven otherwise like MS and Myasthenia gravis. I am well over 50+ surgeries and have been plagued with orthopedic issues from a bad car accident and stupid bad luck, along with years of playing sports. My medication list is ridiculous and it gets slapped with “Poly-pharmacy” all the time, something that the good providers see as a potential problem but not sure how to handle it. I swallow pills and give myself injections like its my job!

    I write this today, not for pity or attention, but mostly for my own good and hopefully someone else will feel less alone in their own medical journey. I do not expect my family, friends, or my “tribe” to fully comprehend all of this, as I barely do. I do hope that those who surround me with love give me grace to be imperfect sometimes. In turn, I vow to keep fighting and giving myself this same grace. I will continue to “Not let the hard days win” as I have won !00% of my battles against bad days! I will continue to search for new treatments and support, my biggest adventure in this area is attempting to get a service dog for mobility, assistance, medical alert, and of course companionship; all of this would be a total game- changer.