Counting My Spoons

07/17/2025

Wow, it's been a while and much has happened. Last time I updated I was starting Methotrexate. It worked a little but the side effects got worse and worse to the point where I was having symptoms that had my doctors thinking I had some sort of dysautonomia - I could barely walk a few steps without having support, was almost passing out every time I stood and I'd wake up with my BP bottoming out. BUT, getting tested for isn't easy and UAB had a year wait. So, my GP suggested I try to get into Mayo. I applied and a neurologist there was willing to see me. I was able to go to in February of 2024. By the time I got there I had discontinued because of the combination of side effects I knew were related to the med, thankfully the dysautonomia symptoms also subsided. But, I still wasn't well and we still wanted answers.

We have been so thankful we went. I saw Karissa Arca, who happens to not just be an amazing neurologist who focuses on and dysautonomia, she is also an active advocate for us, regularly going to Washington to advocate for better research and care for those illnesses.

Had I gone to UAB they likely only would have done the dysautonomia testing, but Mayo is different. Dr. Arca took my history and had rescheduled me for several days of tests. When we saw her in person she talked to us and examined me for 2 hours, based on the new info she added more tests.

It was an amazing experience. After having my share of doctors dismiss me and possibly even misdiagnose me, it was so wonderful to really be heard and have someone dig to find the answer.

Just a few weeks before we went to Mayo, Brandon took a new position at the University of Alabama, so while we spent the weeks prior to the trip packing, just a few days after getting home, we picked up and moved 3 hours away. It was scary and exhausting but a little over a year later we are so happy we did. I've found such amazing doctors in Birmingham and Tuscaloosa. And, about two months ago, we bought a house.

07/02/2021

What are your tips for self-care while you work? Check out this blog post for my six tips.

Self-care isn't just about down time and it doesn't end when you step into the office. Self-care is something you do 24/7. How I focus on self-care even when I'm at work.

05/27/2021

CBD oil was the thing that finally ended my battle with insomnia... a battle that had been on-going for a decade.

How CBD oil tincture finally put an end to my on-going insomnia so that I could finally fall asleep easy and sleep through the night.

05/26/2021

We all deal with tough and stressful times. Chronic illness can make them even worse. Here's 5 things I've learned to help me deal with those stressful times that can't be avoided.

Stressful times will always be there, but so will the good times. 5 things I need to remember to help me manage the stressful times.

05/25/2021

Are any of these six mental actions making you feel physically worse?

These six mental actions create stress and anxiety that can leave you feeling physically worse.

05/24/2021

If you've ever felt like your doctor was biased against you, this study says you probably weren't wrong.

Medscape study questions whether doctors are biased against patients and in what way it affects the treatment that they give.

05/14/2021

Have you ever considered writing a letter to your illness? My letter to fibromyalgia -

A letter to my illness. "You may suck so much out of my life, but you've also given me much to be thankful for."

05/13/2021

Did you know that sometimes relaxation can increase your pain? We are all unique.

A medical study examines the effects of stress and relaxation on fibromyalgia.

05/07/2021

Have you tried meditation or mindfulness-based stress reduction? With continued use over time, it can help relieve many of the symptoms of fibromyalgia and other chronic conditions.

Mindfulness based stress reduction is an 8 week course designed to teach various types of meditation. Multiple studies on effect on Fibromyalgia patients.

05/07/2021

Are you still viewing setbacks as failures? The truth is that when you discover something isn't working, a medicine or treatment doesn't work, it's not a failure. It's an achievement because you've ruled out something and are now one step closer to finding the right answer.

5 Mistakes those with chronic illness need to stop making. When we live with chronic illness we see mistakes everywhere but may be ignoring these.

05/06/2021

What books have you found helpful with dealing with chronic illness? I don't mean cure books (there are tons of those) but books that have actually helped you in some way - whether it be changing how you think or changing what you do to cope or manage your symptoms?

Here's 13 of my favorite books that have helped me through chronic illness.

These 13 books don't promise cures, some aren't even about chronic illness specifically, but they will help you live better and feel better, mentally and physically.