Fiercely Independent Pam

Tag: Chronic Illness

  • Bible Study Everyday! Using the Great Adventure Bible As A New Translation!

    I have really been enjoying the Bible in a Year Podcast. Each morning I am able to follow along using the Great Adventure Bible, I wasn’t going to buy a new Bible, but it seems worth it for the correct translation. I am not sure if I ever did morning Bible Study, but I am enjoying it!

    Each morning I am following various readings and following along in the Bible. I am recognizing the various feasts or offerings. It has been great to study the Bible directly instead of just listening to the Bible.

    I am sure as the year goes on, I will enjoy the readings even more. I can finally see the plan for covering the whole Bible. Right now, I am still waking up and getting ready for the day.

    I hope my Bible content isn’t too boring, as I am still learning how to add more content.

  • I’m Working So Hard Independently And Making Progress But Hopefully I am Not Running Out of Time!

    So much attention has been spent on making sure I can stand without much support, I am exhausted I did not realize how much my abs are working. I am sore and tired, but moving along to be able to stand independently. In the meantime, I am still using a slide board at times to move myself since standing isn’t fully happening. I will continue to practice lifting my booty up and off the wheelchair seat. My arms are tired and fear is running high.

    I wish I never lost so much strength. I kept telling the folks at the hospital that I was losing strength and needed to be evaluated for rehab or even just PT/OT, but they did not listen to me.

    Today I was able to complete 10 minutes on the Nustep independently, which felt wonderful. Unfortunately I wasn’t able to stand and pivot to get on the NuStep independently. This needs to happen before I get home. The weekend is coming up, which means less therapy, but I am “owed” some therapy, so I am hoping that happens.

    In other words- I am working hard at growing my audience online through Facebook, Instagram, and even Tik- Tok. I completed a few online courses to help me figure out the allorgrithms to grow my followers. If you see my accounts, please follow them- it would mean the world to me! I am thinking I finally got a hold of what I am doing with the various accounts.All of this is being done Independently!

    I am also enjoying the Winter Olympics tonight is the opening ceremony and I am watching it carefully. It’s enjoyable and hopefully better than the Paris Summer Olympics.

    I’ve managed to figure out how to charge my various devices, including my visible armband. Thank goodness for Amazon deliveries even here!

  • One More Surgery Before The End of the Year!

    Nothing like finishing the year with an unplanned surgery. Yesterday, I ended up having a surgery biopsy of an artery near my left temple in an effort to learn more about a new possible diagnosis. All went well, I was thankful for my friend to take me and despite being a late add the day after Christmas, I made the most of it. Here is a link to the condition they are “treating for.” Basically, it’s yet another autoimmune issue.

    The hardest part continues to be taking such high dose steroids again. I needed a iv dose on top of everything else so sleep is hard to find. Luckily the pain is well managed with my usual and just a little extra Tylenol. The results will be pending until I follow up with the rheumatologist on Tuesday. still figuring out transportation for that trip too.

    In the meantime, I have a long awaited neurologist appointment on Monday to hopefully establish local neurology care and possibly go back to botox shots for my migraines. I made this appointment over the summer, so I hope it will be worth it. I’ve heard good things about the provider. Its hard to keep my expectations low at this point with a new provider, because even those that weren’t able to make much of an immediate difference, usually have something to give. For example, the neurologist I ended up working with in Florida was convinced I had MS, but his help really came in finding me a way to attain my amazing power wheelchair.

    And it goes like that. Some providers have the clinical experiences and are up to my challenge and others have a human side that rise to meet me as well. There are few in between that possess both features and for that I am most grateful. Either way, I have learned to not burn bridges for you never know when you may need them again. Chronic diseases cause extreme burnout for the patient and the providers, but with some patience, it can be managed.

    For this weekend, I will rest and recover, from Christmas, from surgery, and from chronic illness. I am working hard on a reflection of the past year, so that will be coming up. I think I am finally ready to embrace a New Year’s tradition that doesn’t work around a school calendar!