Fiercely Independent Pam

Category: Updates

  • A Busy Week of Ups and Downs and LOTS of Appointments!

    Spoiler alert- LOTS going on! This week was full of twists, turns, and appointments. Some good news, some complications, and of course a lot of smiles!

    Monday brought me to my second home, MUSC, for an appointment with a spinal specialist to determine what, if anything, can be done for my back and neck. It also served as a follow up on my L1 compression fracture. The doctor was excellent and had some ideas for all of my issues. He recommended a kyphoplasty for the fracture since, while it is still stable, it’s not healing well. If it is going to happen, it will be done at the main hospital by interventional radiology, but a consultation is necessary.

    Monday also brought an unexpected ER visit upon the guidance of my home health nurse. The hematoma that I ended up with at my last hospital visit was looking bad and angry. The ER wasn’t super helpful but I managed to get an antibiotic as well as a referral for wound care.

    Tuesday was a day of appointments at home. I had PT, OT and an appointment with my medical advocate. I also had a GREAT conversation with PAALS about next steps in regards of “my” service/assistance dog. I am ecstatic to see what the future holds for this area of my life!

    Wednesday was a self-care day! I had my hair cut and colored by my favorite stylist, Amanda. I shared her a smile from Seeds of Happiness with her and she was super excited to share it with her son! I also made a TON of phone calls trying to catch up with scheduling new appointments and follow ups.

    Thursday was a tough day, I really struggled to get up and shower, needing to sleep for two hours afterwards. I had an appointment in the afternoon with the nurse practitioner at my pulmonologist’s office. The appointment was intended to be a follow up for the nodule that was discovered on my lung and the follow up CT scan. The nodule couldn’t been seen because the scan showed pneumonia. I was put on an additional antibiotic (my third), nebs, and Musinex. The bright spot of the day was getting to see my nephew when my sister in law drove me home.

    Friday afternoon was my long-awaited wound care appointment. I didn’t know what to expect and what would happen moving forward. I had a 1pm appointment and was taken right back. The nurse who started the process was amazing! She took my complicated medical history, examined my wound, and set me up for the doctor. Then, the doctor decided that the wound needed a full debridement. This process was probably one of the most painful experiences I have had despite the use of lidocaine. It was miserable, but necessary. He also recommended the use of a wound vac (to be started at my appointment next week). I will visit the wound care clinic weekly for the foreseeable future and then home health will touch base weekly as well.

    Unfortunately, this week made me cancel a lot of plans because of not feeling well. I hate that sometimes it comes across as flaky. I hate even more that I miss out on good things. I used to say that at some point this will pass, but I’m not thinking that will happen. Until then, I will keep smiling, hoping, and praying!

    Me and Amanda sharing a Seeds of Happiness smile!

  • Home Again: Finding My Way Back to Church! Alleluia!

    I am a self proclaimed “Cradle Catholic”, meaning I was raised in the faith and through discovery and reflection continue to practice the faith. I have had my share of “battles” with the Church, but I always find my way home. I love the traditions, sights, smells, and sounds. I love that no matter where you are, the Mass is familiar. All of this to say, after over three or four years, I found my way back to a physical Church for Mass this morning.

    Through the gift of volunteers, I have been able to receive Communion each week and join in prayers, but the actual physical act of attending Mass in a Catholic Church was not possible due to many different reasons including my health and its stability, as well as transportation needs. Again, with the help of volunteers, I found two women ready to help me with the transportation issue and I am so grateful for that.

    I was able to join in the recitation of the Rosary prior to Mass and it was the first time that I said the Rosary in a group setting since studying the Rosary using Ascension’s Rosary in a Year program. My level of understanding and devotion was much deeper than before the study. I spent this time focused on Our Lady and the gifts she has bestowed on me in the last few years.

    Then came the actual Mass, while not my favorite “flavor” of the Mass, it was amazing to be in a church with statues and art work to focus my attention on while participating in the familarness of the Mass. I was impressed by how much rote memory took over and I participated fully in the prayers. Of course the highest point was being able to receive Jesus with praise and thanksgiving.

    On a side note, I have to comment on the accessibility of the Church. Handicap entrances without any ramps or similar plus a purposeful planned handicap seating area made the experience pleasant and welcoming for sure. I hope that as my health improves, I will be able to stand more, but for the first time back, I didn’t want to cause any problems. Our churches have come a long way in the area of accessibility.

    Returning “home” is a big step in my quest for my “new normal.” I was missing visiting Jesus in His house. I didn’t realize how much I missed the rest of what comes with attending Mass in a church. The sights, smells, and bells, as it is said are comforting and give me fond memories of everywhere I have worshiped over my life. As for now, I have found my new home and can happily say I was pleasantly welcomed there!

    A large stained glass window at the front of St. Andrew's Church
  • Chronic Illness and Missing Out on the Good Things!

    Chronic Illness and Missing Out on the Good Things!

    So, my medical issues caught up with my social life, again… Chronic illness means that sometimes, often, you miss out on great things.

    Today is my niece’s high school graduation party. The one she planned herself and I am so proud of the young adult she is becoming. She has her mind focused, Jesus in her heart, and BIG plans for the future. She is one of the big reasons I live here, I want to be part of their lives and watch them grow.

    Over the last week, I was hospitalized for six days. I’m dealing with some major GI issues and still on a pretty restrictive diet. That coupled with the heat/humidity is a recipe for disaster and the last thing I would want to do is take attention away from her on the big day by needing medical attention. All of this to say, I will be staying home and not attending.

    Being a grown-up means making decisions that are in your best interest as well as the best interest of those you care about. Its not about what is the most fun or doing what you want all the time and that tends to be one of the hardest pills to swallow with chronic illness. I can deal with the procedures, doctor appointments, medicine’s side effects, and more, but missing out on the BIG things is just so hard.

    I know that my niece and the rest of the family understands- they are great about it, but it doesn’t make my disappointment any easier. I will find another way to celebrate my niece (in air-conditioning)and life will move along. I will eventually just chalk this up to my life right now and realize that making the right choice is always the better choice.

    I hate sounding so “down” and I really am not. I just think it’s important to point out that everything isn’t always sunshine and rainbows! Chronic illness is a hard thing to battle every moment. You are juggling so many different things and every day, or even every hour is different. You just never know what is going to happen. So, my fellow chronic illness fighters- keep the faith and good fight. For my family and friends- thank you for your understanding and knowing its not about what I want to do.