Fiercely Independent Pam

Tag: Don’t Let the Hard Days Win!

  • A Floppy Bladder and a Super Early Start-

    My arrival time for being at MUSC was 6:30am. I live over 2 hours away from MUSC and hired a new driver service for this trip. Meaning we got our day started around 4, earlier to get dressed and stuff. I was scheduled for a Cystoscopy, biopsies, and urethral dilation to help determine what is going on with my bladder and why it has stopped functioning correctly.

    The good news is that all of this was accomplished under anesthesia; if you have ever been told you need to be dilated, don’t allow them to do it without sedation- Trust me! The timing was impeccable, like a well oiled machine. Quick change and wipe down, followed by consults with the urology resident, and anesthesiologist. I met my doctor in the operating room and he was exactly as I remembered him to be, caring, detail oriented , and ready to figure out my lovely, stupid bladder. For more details about my “stupid bladder,” click on the link.

    I was quickly asleep (the way I like it!) and my wonderful doctor examined my bladder and urethra. Biopsies were taken and I was dilated to a 30 French, and a foley catheter was placed (surprise)!

    The doctor shared his results with my wonderful friend, Yvonne, who made the trip with me. I also appreciated that the doctor’s notes were already in MyChart when I checked on the way home. He is addressing my bladder as “floppy.” It is one form of neurogenic bladder dysfunction. I am intrigued to find out more information from the doctor when I have my follow up. It could be from diabetes or neurological issues (and we all know i have plenty of those).

    It looks like my floppy bladder and I are going to continue to bond over self-catherization. I am glad that I have gotten past the learning curve for this process. Now, I just need a little good luck when ordering the catheters, as they seem to get lost in the mail and everyone points a finger at someone else. More supplies to keep track of and ensure I don’t run out.

    Not sure exactly what the future holds for this uncooperative, floppy bladder. I am eager to figure it out so that I can accept what needs to be done and move on. It’s the waiting that bothers me. Well that, and the fear of running over my foley again!

  • Pain, Pain, Go Away: Attempting to Quell the Monster!

    Pain is a force to be reckoned with. Sometimes you can prepare yourself for the pain. Surgeries or the beginning of an illness send signals to your brain that pain is coming. Other times, like after an injury or when something happens quickly your body can’t prepare itself but still you know where and why the pain is present. Nevertheless, pain is a monster that can be difficult to quell.

    Then there is the other kind of pain. The ever present reminder that your body is not normal. Whether it be a headache, backache, stomach/abdominal pain, or leg pain, chronic pain is a monster at a whole different level. Like a “friend” who clings to you, regardless of what you do to “shake” him off. A popped Tylenol or heat/ice pack may make him “shut up” but he’s still there clinging to you.

    Each morning you wake up and check to see the status of your clingy “friend.” Sometimes you think it’s clear and you begin to celebrate, only to find that he’s not only present, but brought more clingy people.

    I think it’s important to note, that people with chronic pain do an excel at “masking” their pain, and you do not know they are in pain simply by looking at them. The pain is always there, sometimes it’s a good day or even an hour, but there is always an expectation of payback for that good time.

    Chronic pain is something I struggle with each day. While it’s mostly in my head/back/abdomen/leg, it can be present anywhere. It exhausts me. Sometimes, the only thing I can do to quiet the force is sleep. I’ve tried injections for my back and head. While I enjoyed telling people I got Botox, I didn’t see great results. I now give myself 1 injection a month for chronic migraines and another once a week for Rheumatoid Arthritis.

    Along with the injections, I supplement with ice/heat as well as some minerals like magnesium.I also use braces or compression garments that seem to help. I try very hard to not take pain medication on a regular basis, unless I feel that I have lost the battle and need to get relief.

    Pain medications are funny things. Not only to you have to practically promise your first born to get a prescription, but once you have a prescription you are viewed as a “user” if you actually take them. I am changing my pain management care from a medication free practice (didn’t know this at the time of starting with them), to a mixed use type of practice and hoping for the best.

    I hate taking pain medications! Besides the side effects, I feel like I have given up. I hate that I end up in bed anyway. I especially hate asking for them in the emergency room or hospital setting.

    So, what are we to do? Chronic pain is here to stay. I can accept my clingy “friend” or chase him away with pills that leave me feeling worse than before at times. I choose to fight this battle, using meds only when I need a “time-out” to quiet the monster.

  • My Meeting with the Wizard: An Adventure in Dysautonomia

    I did it! I met the wizard- he came in the form of a Dysautonomia specialist at MUSC. (see here for more details)He met with me for almost a full hour. He explained how picky he is being choosing patients so he can do the most good. I felt lucky to be pat of the “unlucky’- sick enough to see him.

    We talked about my symptoms- I was glad to have organized all of them ahead of time. We also discussed previous diagnoses as well as previous testing, like my tilt table test in 2014. He seemed to know what I was going to say before I said it, especially in regard to symptoms.

    Then came the next steps: a skin biopsy for small fiber neuropathy, medication review and management, as well as a focused exercise plan to build up standing tolerance. All of this seemed to “click” with me as the wizard said it, especially the idea of small fiber neuropathy vs. dysautonomia.

    I have never heard of small fiber neuropathy before but it, not dysautonomia may be my culprit. It causes several issues with touch, temperature, pain, and even some bladder issues. All of this made sense.

    Regardless, he plans to do a full round of dysautonomia testing once he finishes building his “lab.” In the meantime, I’m to focus on my blood pressure, keeping a log as well as raising the threshold for medications(keeping my blood pressure a little higher than normal so that when I stand up, it doesn’t bottom out). Reintroducing some salt into my diet to keep me from bottoming out and beginning a focused cardio exercise plan that gradually introduces standing exercises.

    It’s a lot of work on my end, but I’ve never stayed away from hard work, and believe I’ve had the power all along, like Dorothy. Now I have learned that the Wizard isn’t just a guy making smoke behind a curtain, but a real human that has done his “homework” of sorts on the puzzling condition of Dysautonomia.

    Oh! and the best part is that the Wizard is willing to do virtual visits as much as possible, which is very exciting for me. As much as I love traveling in Cinderella’s Coach, I like not spending the money or the time to travel to Charleston.

    “You’ve always had the power, my dear, you just had to learn it for yourself.” — Glinda