The warmer weather in Florida has made me feel alive again
Moving to another state was risky, but our efforts have paid off
I rub my eyes as sunlight bathes my face. I stretch and sit up, peering out of the floor-to-ceiling windows in our new home and over the balcony. My new view overlooks a lake here in Florida. As I stretch, I assess how my joints, bones, and muscles feel. Minimal pain — maybe a 3 out of 10. That’s a win for someone with chronic pain.
Living with a rare disease, multiple comorbidities, and undergoing monoclonal antibody infusions that give me chemotherapy-like side effects means I deal with my fair share of chronic pain. I had no idea that being diagnosed with atypical hemolytic uremic syndrome (aHUS) in 2020 would change not only my body but also my entire life.
My pain stems in part from all the physical trauma I’ve experienced. I nearly died in September 2020 and spent almost two months in the intensive care unit. I needed dialysis for five months. This adventure caused permanent damage to my kidneys, liver, heart, and uterus, the latter of which was eventually removed during a hysterectomy.
In addition, my aHUS treatment, Soliris (eculizumab), is known to cause bone, joint, and muscle pain. It can also cause headaches, which I experience regularly.
The benefits of warmer weather
My family and I, who’d been living in North Carolina, took a huge risk recently by purchasing a home in central Florida. I’m happy to report that it has paid off.
Why Florida, you may ask? Temperatures and weather. Cold, rainy, or snowy weather tends to exacerbate my pain, so we began looking at warm locations like Hawaii, Florida, Puerto Rico, and the U.S. Virgin Islands. I originally wanted to live somewhere tropical outside of the U.S., but I depend on Medicare for my treatment. So, after weighing the pros and cons, we settled on Florida.
Warmer temperatures and heat therapy make my symptoms less severe. For example, I sleep with a heated blanket every night and no longer get severe cramps in my calves. And my pain subsides significantly after I use hot tubs, saunas, thermal wraps, and so on.
But waking up every day to temperatures that are almost always above 60 F has been life-changing. I’m able to get out of bed and climb stairs more easily, and I need fewer naps. I’ve also been able to move around better and complete more tasks and projects than I could’ve done in North Carolina.
I spent the past two winters miserable. It was as if I needed to hibernate; I spent most days curled up in bed freezing. aHUS has made me permanently anemic, which makes me feel cold most of the time. Staying warm was extremely difficult.
It’s been amazing to be able to be more active here in Florida. I spent four years feeling trapped in a body that’s no longer healthy, but now, I’ve found some semblance of normalcy. I’m able to play with my boys, carry in groceries from the car, and simply enjoy each day. My legs still swell when I’m active, but it’s a small price to pay.
It may sound trivial or insignificant, but my life has improved just from relocating somewhere warmer. Everything here seems brighter, easier, and more relaxing. Moving to Florida has made me feel alive again.
Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.