Fiercely Independent Pam

Tag: Chronic Illness

  • 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!

  • Hurry Up and Wait…

    My dad would say this all the time, especially when dealing with the medical field. Being in the hospital is a waiting game; you have very little control over when something is going to happen. Nevertheless, you always seemed rushed.

    I’ve been in the hospital, this time for a week now. When I came in, they wanted to do a lumbar puncture to determine what could be going on in my head/shunt. The doctors attempted several times bedside in the emergency department, but had no luck. Lumbar punctures are never fun and always pretty painful. The decision was made to repeat the attempt with the help of interventional radiology (IR). The problem with this is that IR would not do the lumbar puncture until my blood thinners were held for at least five days. So, I waited.

    Five days later landed me right smack during the weekend, where there is a skeleton crew for IR. So, it being Monday, I believed that I would be scheduled today. Around four o’clock, I figured it wasn’t going to happen and I was bumped to tomorrow. My nurse confirmed this and a whole lot of “Hurry up and wait” took place.

    We will try again tomorrow and with any luck it will be a success and I will be able to go home afterwards. Having a shunt and having IIH means that lumbar punctures are always on the table. I came in with a severe headache and blurry/double vision. These are troubling signs of possible papilledema or swelling of the optic nerve in one or both eyes. This can lead to permanent vision loss if not corrected and treated.

    I’ve had several rounds of dealing with papilledema and each time my previous eye doctor would remind me of the seriousness of the issue. Unfortunately, an eye exam is a tricky thing in the hospital. It usually needs to be done as an outpatient because of the necessary equipment and most hospitals don’t have ophthalmologists available beyond phone consults.

    I will be sure to follow up with a local ophthalmologist and if necessary, my neuro- opthalmologist at MUSC. More opportunities to “hurry up and wait!”

  • Chronic Disease Day: Finding Strength in My Struggles

    Somehow I missed that yesterday was Chronic Disease Day. I have a multitude of Chronic Illnesses and recently I have decided, unapologetically, to embrace them in order to give me back my independence. I know this sounds weird, but the fight I am in requires other people to have knowledge about my diseases. While a miracle can always happen, I recognize that I am not going to “Get Well Soon,’ or even “Feel Better” any time soon. I need those that love and care about me to recognize this as well.

    On this day, may all of us embrace the fighter within us. The one who refuses to give in, even on the worst of days. The one who gets up and out of bed, even if its temporary, just because it might make us feel better.

    Despite being in the hospital, I spent my day resting, doing pt/ot, and researching new ideas to help me on this journey. I sent emails to brands to inquire about partnerships, I shopped a little to find products that will help me, and worked on bringing you this post. I 100% prescribe to the philosophy of “Don’t Let the Hard Days Win.” I recognize that this isn’t always possible but my batting average against the hard days is pretty good.

    These are far more than positive thoughts, they are statements if independence. As long as I can accomplish something, despite my chronic diseases, I am remaining independent. Independence is not just about being able to do things on my own, but rather being able to live a life as close to what I can imagine it to be. I want to be successful and useful, my life requires purpose. I am still working on what that exactly means, but for now, I will sum it up to say that on this Chronic Disease Day, I am winning! My POTS, diabetes, adrenal insufficiency, Hashimoto’s, Asthma, and tons of other diseases aren’t as successful with me because I believe in the power of fighting.