Fiercely Independent Pam

Tag: Chronic Illness

  • 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!

  • Accessibility Rocks: Being a Tourist in Your Own Town!

    I’m catching up after an amazing weekend with a friend from out of town. There is nothing that can do as much good as spending time with a friend- genuine, quality time listening to each other, sharing stories over coffee and yummy food. This is true soul food. The only thing that is better than friend time, is baking in the glory of the sun at the ocean. And when you combine the friendship and ocean, something magical happens- especially if accessibility needs are met.

    One of my favorite things to do is to play tourist in my own town. Living in a tourist destination makes this super easy to do. Myrtle Beach is pretty accessible, but it can still be difficult to navigate in a wheelchair at times. This past weekend, we cruised around town and took in the sites of old Myrtle Beach as well as enjoying some quality meals. We rode the giant SkyWheel, took the tourist pictures (and bought them), and even did some surf shop shopping. The greatest accomplishment of this past weekend, was making it to the ocean. Not just looking at the incredible views that the Atlantic Ocean gives us, but getting down on the firm sand and feeling the warm of the sun-kissed sand in between my toes.

    This feat was accomplished because we were able to “rent” a beach wheelchair at the awesome state park. The beach wheelchair has giant balloon tires that allow it to move smoothly over the dunes and sand. The park also rents power beach wheelchairs during the season. These rentals are free but on a first come, first serve basis. I look forward to trying out the power beach wheelchair come Spring.

    Accessibility is about making things fair for everyone. Universal design helps everyone. The Mobi mat that covered the sand over the dunes- parents with wagons or strollers benefit using these too. The ramp to get to the beach access without steps helps the senior citizens who want to see the ocean as well.

    It’s beyond time to make universal design the norm. Accessibility should not be the outlier in a park. Why can’t all dune cross-overs have a mobi mat and not stairs? It’s not a budget issue, as building stairs is an expensive process too. Accessibility shouldn’t cost anything extra for the user who requires it. That is, in this example, the beach wheelchairs are free for use and included in the admission/parking cost. Being disabled is expensive enough and lonely enough, we shouldn’t have to pay extra or put our loved ones out to be able to access places.

    Whenever I have someone in town or helping me navigate the world through my disability, I realize it’s an opportunity to demonstrate the world from my view. That is, for example, what it feels like to have to use the ramp in the back of the building instead of the front door. Or to have someone talk to you without making eye contact or to be stared at. It’s a chance to see how people do not move out of the way when you are traveling in a wheelchair or how the stupid end-cap displays in a store are a giant nuisance. It’s a lightbulb moment that is otherwise lost.

  • Fifty Pounds Gone: My Journey of Weight Loss (This Time)!

    I’ve always struggled with my weight. I honestly do not remember a time that I wasn’t overweight, except a brief time that I worked hard to lose a lot of weight and quickly gained it back. I have always lived by the idea that it was better the maintain than to yo-yo back and forth and feel trapped by my weight.

    Fast forward to the last five plus years of chronic high dose steroids, diabetes, and a slew of health issues, my weight ballooned to a ridiculously new high. For the first time, I felt uncomfortable in my own body, my weight impacted everything and definitely did not help my health issues.

    Unlike the last time I made a major effort to lose weight(about 15 years ago), I didn’t seek out a program or system to follow. I was lucky, something found me. My orthopedic’s office signed me up for something called Prescribe FIT. This is a 1-1 program where I was matched with a health coach and complete virtual visits weekly. They also sent me a bluetooth scale that links directly to their incredible app.

    I use the app daily to weigh in, report on goals set, and can even enter water and nutrition daily. My weekly virtual visits with Anna are great, we check in on weekly goals, struggles, and brainstorm new approaches. It’s a good balance between self-sufficiency and ongoing support.

    Today, I reached just past the fifty pound mark and losing 20% of my starting weight in early May! I am also about eighty pounds down from my max, a little over a year ago. I am quickly looking forward to my next short-term goal of being “just” overweight and not obese. I am struggling to find clothes that aren’t too big and that feels wonderful! For the first time in a very long time, I am wearing “regular” sized clothes and not plus sized. Other people are noticing and that too is a great feeling.

    I will continue doing what I am doing, I think i’ve found my stride in this journey. I appreciate the support from Prescribe FIT, my health coach, Anna, my healthcare team, my family/friends, and everyone who is helping cheer me on along the way!