Fiercely Independent Pam

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  • Finally, Good News- Shunt Updates…

    Well, previously I posted about my shunt/IIH/high pressure symptoms and issues. I had to wait a week to get the lumbar puncture (LP) done because of being on blood thinners and dealing with the weekend. Interventional radiology (IR) performed the LP on Tuesday and the opening pressure was indeed high. I knew it was! Also, they found high levels of protein in the spinal fluid (CSF).

    My local neurosurgeon was in this morning and developed a plan. The shunt is going to be readjusted to a lower setting so it drains more and go back on diamox (ick!). I need to follow up with ophthalmology asap and setup a new ct and appointment with neurosurgery.

    Not sure what is happening about the high protein levels, but it might just be an incidental finding, although I’ve had it before. I am just beyond ecstatic that the shunt doesn’t have to be replaced at this time. I really couldn’t wrap my head around another surgery at this point and/or the impact it would have on my hairstyle!

    Now I just wait… for neurosurgery to readjust my shunt, which can be done bedside with a cool magnet thingy, and for the final word on discharge. I am so looking forward to being home and in my community. I have more follow up appointments than I’d like, but that okay by mean if it means I can sleep in my own bed and do my “thing.”

    My bed at home, waiting for me!

  • 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!

  • The Ultimate Decision: Finding My Purpose Beyond My Career

    I have a love/hate relationship with Facebook memories. I love seeing pictures or updates that include how little my nieces and nephews once were or incredible days with my friends. Then there are the memories that sting: hospital visits, failed operations/procedures, rough days at work, etc. There is a third category of memories, life changing events/ announcements.

    Today, the Facebook world reminded me that six years ago, with the help of my amazing doctors, I announced that I would be stepping away from my education career to focus on my health. I remember it took me a couple of weeks to get the courage to tell others. The reality was that I already knew I wasn’t going back to school, there was no way my body could handle the workload. Nevertheless, I posted the decision that not only would I not be working anymore, but that I was moving to Florida to live with my parents.

    Since I was a little girl, I knew I wanted to be a teacher. I tortured friends and family with the never-ending need to play school and be the teacher. I loved chalk, alphabet magnets, workbooks, and of course reading! I never thought of any other career path and when I realized that I could be an administrator, I wanted that even more.

    So, there I was, unable to work in a school, or really anywhere, packing up my dog and all my belongings, headed to southwest Florida. It was summertime so the sting of not being in a school wasn’t there yet and after all, it was going to be a short stint, just until I could get back on my feet and be healthy again. What wasn’t there to love? I would live in a great house with my wonderful parents and figure everything out.

    Then August came, I didn’t have to start hoarding school supplies, I didn’t buy a new planner or new outfits, I simply existed. Each day was like the one before, no students to make it different or exciting. I was a lost soul. Through the help of an incredible therapist, I worked my way through the loss of my career and everything that I thought was connected to it. Each season stung a little less and I found new purpose.

    At the same time, my parent’s health, especially my Mom’s, started to decline. Her memory issues became prominent and my Dad required more appointments and support too. I was running from my appointments to theirs. It became a rhythm of sorts, doctor appointments, medication administration, spending time together at things like car shows or grabbing a meal out on the town. I loved this more simple life.

    Then Covid hit, changing everything. We were stuck together and still needed to get medical care, especially me and my frequent hospitalizations. To this day, I’m not quite sure how I would have been by myself (well with Sofi) though lockdown and I have no idea what my parents would have done if I wasn’t there. My dad perfected his homemade apple pie, mom continued to decline, especially with a bad fall that required brain surgery, and I kept focusing on getting “better.”

    Then the hard days hit- Dad was struggling, the cancer was everywhere and he was showing signs of needing to give up. Mom’s time in rehab after her surgery left her as a shell of her former self. She was becoming a lot to handle at home and required constant care. I had multiple new diagnosis’s and was in and out of the hospital receiving treatments.

    Honestly, I don’t remember too much of the day to day events, which is a good thing because they were tough. As a family, we began making plans to move Mom into a nursing home, a decision that was not made lightly. Then Dad was in the hospital and it didn’t look good. Shortly after we moved Mom, dad took control of his own path, we lost him less than a few weeks later.

    Mom continued to live at the nursing home and I visited pretty much every day. I brought an iced cappuccino and munchkins and she would tell me stories about visiting with her high school boyfriend. The rhythm became new again. I continued to decline in health and required my own assistance with everyday things. I met wonderful people that helped me find my independence again.

    Purpose is not just our career goals. It can be so much more important. Through losing my career, I found an incredible purpose to continue to serve. My family needed me at that time and I would have lost the chance to make incredible memories if I wasn’t pushed to put myself first and stop working. You never know what crazy road God puts you on. It is our job not to question, but believe.

    This hangs in my bedroom as a reminder of my “real” purpose!