Fiercely Independent Pam

Tag: truth

  • 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

  • Home Again and it Feels So Good!

    Success! I’ve been home for almost 48 hours, which these days is a record for me! I am absolutely exhausted but getting back into a routine and good sleep are helping. The true test will be tomorrow when I resume my technology offerings here in my community.

    I find routine the number one thing I can do to stay healthy and on track. I try to get to bed around the same time each night, an early 9ish and get up around 6:30 or so. Sometimes I need to go back to bed in the morning and restart again, but I try to stay out of my bed during the day.

    One of the greatest purchases I have made for the purpose of good sleep habits at home is my light/fan fixture. It’s an enclosed ceiling fan and led light combination. I have several light modes such as night, casual, reading, and work. In the morning I usually set it for work, which is quite bright, during the day if I need it on, I set it for casual. While getting ready for bed, I set it on night, which helps a lot.

    Other things that help set the mood include blue blocking readers (I use during the day as well as getting ready for bed). Trying to stay off my phone(this one is hard) and using audio books or meditations to listen to that help me fall asleep. I’ve been doing better about not waking up in the middle of the night and being so awake that I try to get things done. Usually, I am able to simply go to the bathroom and hop back in bed.

    Being home means that I am able to complete tasks and errands like grocery shopping, prescription pick up, and just grabbing a snack or drink. It’s a sense of independence and freedom that you never feel in the hospital. I long for independence and being restricted means I get more frustrated easier. How do you deal with frustration? What works for you to stay calm and collected the whole time you are hospitalized?

  • A Shout Out- Saying Thank You to My Care Team at Grand Strand Hospital

    I am a big believer of acknowledging when people go above and beyond what is expected of them. Sometimes, it’s not a big gesture or lifesaving heroic act, but a quiet voice that whispers, “I believe you and want to help you” that makes all the difference.

    I am currently in the hospital and today is day nine of being here. Nobody enjoys being in the hospital, but that isn’t anybody’s fault. For the most part, nurses, doctors, and all the other healthcare workers really try to make a stay decent. It hasn’t been all smooth sailing, but there are many individuals that are allowing may stay to not be so hard.

    First off, a special shout out to the nurses that I have met and helped me thus far. From the emergency department, to the ICU and now on the regular floor, then nurses have been dedicated, knowledgeable, and generally enjoyable to be around. Whether it was a good conversation in the middle of the night(and there were many), careful administration of medications, or just interest in what I was doing to pass the time, “my” nurses help keep me positive despite the health challenges I face. It isn’t easy to find the time to connect with a patient in light of the demands of the job, but it is so appreciated.

    Secondly, the doctors and providers that have steered this latest visit have been top notch. My biggest hurdle on my personal healthcare journey, is when I am not believed, especially by healthcare providers. I have an odd sense about my body and can always tell when something isn’t right. I so appreciate the providers that trust this gut feeling and explore possibilities, even when the presentation isn’t typical. Today, my doctor came in my room after having a procedure and took the time to acknowledge that my journey is difficult; that made a huge impact on me.

    Finally, the “other” healthcare workers that pull together to make time spent in the hospital not so ,miserable. This includes the housekeeping staff that say, “Good Morning” instead of avoiding contact and listening to their AirPods. Also the techs who just know that an ice cream will help in that very moment or are willing without complaining to clean up a mess or change a bed without being asked. The smiles from transport workers and dietary departments go along way too.

    I am sometimes guilty of only acknowledging when something goes wrong. This visit things did go wrong at times, but someone always made it right by listening to me. Being chronically ill, means a lot of time is spent in the hospital. I see good, bad, and ugly, but this visit (which will hopefully be over soon), has been worthy of a BIG Shout- Out!! I wish I kept a list of names of individuals that made this possible, but for now, I say Good JOB and Thank YOU!