Category: Health

  • Seven Years Ago… The Best Decision I Didn’t Make Myself!

    I know I write about my Facebook memories a lot, or at least it seems like a lot. It really is my favorite feature of Facebook- I love looking back at the last 16+ years. On this day, seven years ago, I made it official that I was not returning to work (teaching or as a principal) but, with my doctors guidance, filed for long term disability and would be moving to Florida to spend some much needed time with my parents. I was so mad that I couldn’t make the decision for myself, I never thought I would get over that!

    At the time, I felt like a complete failure. I was a talented teacher who couldn’t teach and needed to move in with my parents at 40+ just to make ends meet. It was devastating! My entire world was turned upside down and I was faced with fitting everything I wanted with me for the foreseeable future (and Sofi, my 80+ pound lab) into my Rav4.

    I gave away most of my furniture, put some precious items in a storage unit, and packed up Sofi and I for an adventure that neither of knew what to expect. It turns out that this was the best thing that ever happened to me. Sofi got to live her best retirement life and I traded the classroom for some amazing and needed memories with my parents.

    I was worried that I would lose purpose from my life. I was worried that I would be miserable and HOT! I remember driving the many, many hours south to Punta Gorda and coming up to a stretch of the highway that was outlined in gorgeous palm trees and a bright blue sky. It was my perfect God wink that I was doing something right.

    I had about two years with my parents that consisted of sorting out their needs, pills, and insurance nightmares. We also had many nights of ice cream for dinner, car shows, and easy Sunday rides. We swam in their pool almost daily (especially Sofi) and every morning, my dad would say, “Just another day in paradise!”

    Then the harder days came, mom’s memory was failing and she was loosing mobility, she had some close calls including a major fall and emergency brain surgery followed by a long stay in rehab. Dad’s cancer began to spread and caused him a lot of pain, but he continued to do the cooking, laundry, and other jobs around the house. I taught him the wonders of the instapot and instacart and he learned all about dealing with my food allergies. Of course all of this was during Covid and we desperately needed each other’s company.

    My health continued to disintegrate. Multiple hospitalizations, needing a vp shunt, and mega doses of steroids took their toll on my body. Somehow together, we made it work. I ended up giving up my car, which was a big deal to me, little did I know that eventually I would have to give up driving all together.

    Then came the hardest days. In the same week, my dad passed away, we placed my mom in a nursing home, and I found myself alone again. Luckily, my brothers and sisters are amazing and we continued to work together to get the tasks done. My sisters ended up staying for a few weeks and it was the best kind of medicine for me! Then I found myself alone, in a house I had no business being in (too much to take care of).

    I continued to visit my mom pretty much daily at the nursing home and found that was the best thing for both of us. I showed up with an iced cappuccino from Dunkin and either a donut or munchkins each day, with the occasional break for ice cream. We planned birthday parties and I listened to some pretty crazy stories. At the time, I didn’t realize, but I would do anything to have to make one more stop at Dunkin for her!

    All in all, seven years ago a decision was made that changed every trajectory of my life, but it was the BEST decision I could’ve made. I don’t know how things would have been different but living with my parents for those years was beyond amazing. if you are living through the “caretaking” phase with your parents, just know you will barely remember the “bad” moments, but will forever remember that you were there for them, just like they were there for you!

  • 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!

  • 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.