Surfing with Lupus

[saltysister]

Hi surfers,

I was wondering if there’s any other surfers out there with Lupus or similar disease. I’m hoping to gain insight, Adaptive strategies, camaraderie and more.

The purpose of my post comes from my own challenges. In February 2017 and at age of fifty, I was diagnosed with Lupus after I was unable to open car door due to inflammation . At that time I didn’t have the energy nor ability to return the water. I recently started surfing again and enjoyed many waves. I was able to work around an old back injury pain; however, the cramping in my hand seem to be the biggest concern and barrier. I’m planning on speaking to my rheumatologist on matter. Nonetheless I’m hoping to find a kindred spirit out there, who has similar experience with lupus or similar challenges.

I did see one article on a female surfer, who had lupus but I can’t find anything recent. I wonder if she still surfing.

Gratefully

[jaffa1949]

Welcome salty sister, hey and respect for still going at it!
There’s a whole of aged and wounded kindred spirits on the forum, would love to have you write on how you deal with Lupus.
Me I’m 70 and post cancer, there are back surgeries reconstructed limbs, and amputees on here.
All are living their lives in their way to the full.
Surfing hydrotherapy. Keep the stokewe will enjoy the ride with you
Jaffa
Just an edit to add a heads up.
In California there is avideo out called Resurface, it is about taking Military Veterans of all sorts of damage,surfing PTSD and severe physical disabilities, the video is worth watching for full encouragement and how it turned lives around
any film you can get on Bethany Hamiltonis worth the viewing.

Another model in overcoming is Pauline Menczer, who in spite of nearcrippling Juvenile rheumatoid arthritis became a world champion surfer!

Gopher it!

[billie_morini]

saltysister,
thank you for contributing to "our" forum. Please accept my sympathy for the illness you have, but also accept my encouragement to prevail. While, I do not possess lupus, I do have multiple auto-immune diseases. Two of them cause cramps in hands, feet, and legs. These cramps are not caused by cold water temperatures or lack of potassium. For a very long time, thyroid hormones have helped a lot. But since Summer, I've been getting more cramps in my hands and arms. The activity that seemed to precipitate these cramps was auto mechanics. Simply holding parts in place, turning wrenches, and working under and around the car. On Friday, my (exceptional) endocrinologist suggested taking enzyme CQ10 for 10 days and phone him up. I share this information in case it gives you positive ideas, corroborates something you read, and/or one of your doctors supports it's use. I'll write return with an update in about 2 weeks.

[oldmansurfer]

I don't have lupus but know a few people who do and they tell me they need to avoid getting sunburn because that will set it off. I guess whatever you do you need to check with your physician to be sure your plans are going to be okay.

[saltysister]

Jaffa and Bille,

Thank you for sharing your stories I found them empowering and gives me hope. Moreover, I am grateful for your insights and recommendations.

I’m going to have to tap into the spirit of all the surfers, who continue to get out in water despite the challenges of life tides. I must admit I got caught up in the systemic nature of my lupus and my fears. Thank you for providing the list of all those who conquered their challenges. It reminded me that we all have different challenges and the spirit to prevail is commonality. I’ve already started reading the Bethany Hamilton book.

I look forward to reading your future posts.

Oldmansurfer,
The first thing I learned about lupus was to avoid the sun, which was devastating to hear. You’re right on exposure and trigger flare. If there’s any other will lupy (lupus) surfers out there, full-suit / SPF gear and sunblock has helped me avoid flare up.

[billie_morini]

You are welcome, saltysister. Without identity disclosure, I will share there are two other forum members, whom surf, that are afflicted with diabetes. This, too, is an autoimmune disease. I know a third surfer down in San Diego that also has diabetes. She's got it pretty bad, but finds the ocean provides a therapeutic hug.

[lausurfergirl]

hello Saltsister
I'am Laurence a 54 years old mum and active surfer! I live in Reunion island a french island in the indian ocean.My son who is a keen surfer has also a lupus since 3 months now.The new was pretty devastating for us ,parents ,and for him.He has also kidney issues...He still surfing ,we bought hat ,leggings ,full sunscreen but as we live in a tropical area it's pretty hard to avoid the sun ...I know it's more a female disease so bad luck ,he is young (21) has lost his tan for ever and should prepare 15 mn before entering the water ..but as I said to him :keep surfin' it's your passion even if nobody recognize you and ask you all the time why are you so untanned!! We ,parents feel really sorry for him ,and i'am happy to talk with someone who deal with the same problem!! (sorry for my bad english) !! hope we can have some chats !!

[jaffa1949]

Hi Lausurfergirl.
One thing that amazes and delights me is how many surfers with quality of life threatening issues , still find ways to surf.

There is obviously something way beyond the insults and injuries to our bodies have thrust upon us.

Reunion island stay out of the sun stay cool in all ways possible and come and have great conversation with lots of support here on the forum.

Both you and your son!

[lausurfergirl]

Thank you Jaffa1949! for you welcome post!

[jaffa1949]

For all our friends on the forum who have any disease or condition that lessens or harms their immune system .
Stay Safe............ follow quarantine protocols , all our other friends, help our friends in this situation by social distancing and infection protocols.
We are a surf family in this together wherever we are!