Fiercelyindependentpam

08/07/2025

Please forgive me updating without a video (I had a late "bed bath") So, I won't know too much until I see the drs tomorrow, but I had my lumbar puncture (LP) late today. So far I know the protein count is high again and the opening pressure (that is supposed to be controlled by my shunt) is high, again! Both things indicate that the shunt most likely is not functioning properly and will have to be replaced. A thousand thoughts are in my mind: I feel vindicated that I knew something was wrong with the shunt, sad/angry that I have possibly go through a third major brain surgery, and although it sounds silly, worried about having to shave my head again! This too will pass...

08/06/2025

Have you ever had the experience with medical providers where you feel like saying "WoW, how refreshing to not have to battle with your providers?" I am currently in the hospital awaiting a lumbar puncture and am so excited to state that this is my experience right now! The hospitalist comes in and wants to have a conversation about what is going on with me....

Bottom line- those diagnosed with a given illness are the experts not the providers!

08/04/2025

I am a frequent flyer patient at any given hospital. In any month, I can be in more than I am out. (See Here for more on that). I thought it was time to give some information that makes a stay a little more pleasant. Being Ready: I designate a large tote bag to always have available for visits to the hospital....

I am a frequent flyer patient at any given hospital. In any month, I can be in more than I am out. (See Here for more on that). I thought it was time to give some information that makes a stay a little more pleasant. Being Ready: I designate a large tote bag to always

08/03/2025

Guess where I am... again!

08/03/2025

07/30/2025

Will give a full update tomorrow since I just got in from MUSC after leaving at 6am! 3 pretty long appointments! Thankful for my tribe helping me out!

07/28/2025

After a long time of being in and out of the hospital since the end April, I finally am feeling more like myself, getting stuff done, and most exciting of all: I finally got an appointment with the dysautonomia specialist (neurologist) at MUSC. It's not until August 27th, but still that is less than a month away! I have been waiting for his calendar to open up since it was announced that he was starting at MUSC....

After a long time of being in and out of the hospital since the end April, I finally am feeling more like myself, getting stuff done, and most exciting of all: I finally got an appointment with the dysautonomia specialist (neurologist) at MUSC. It's not until August 27th, but still that is less than...

07/28/2025

07/28/2025

07/28/2025

Love these videos- they excite me so much that this could be my new world!

07/26/2025

I'm not sure if it's a generational thing, the influence of my days at environmental camp, or reading the Lorax more times than I can count, but I have always had a desire to limit my environmental footprint. Unfortunately, as a medical mystery, I create a lot of medical waste: flushes, gloves, iv therapy, IVIG, self-cathing, and more means a lot more trash than I ever thought about....

I'm not sure if it's a generational thing, the influence of my days at environmental camp, or reading the Lorax more times than I can count, but I have always had a desire to limit my environmental footprint. Unfortunately, as a medical mystery, I create a lot of medical waste: flushes, gloves, iv t...