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| Gwenyth and Lizzette |
As many of you know, I participate in an outdoor event every year where I volunteer with an amazing group of people who make up the Alter Abled Access Advocacy crew. We advocate for equal access for those who may be differently abled, providing wheelchairs, access to alter abled potties, deaf interpreters, event information in braille, resting areas, and much more.
It's a three day event held in the woods, where we camp for the event and for a day before and after to do the set up and take down. Its work, but it's fun and rewarding in a way that's hard to express. I've included some pictures of my crew to give you a feel for these lovely people. It is good for my soul and well being. It's one of the things I look forward to every year. However, it is also a challenge to participate and stay healthy, Lupus doesn't like camping. This event happened one month ago and I have to say, I am just now beginning to recover from the Lupus fall out.
Camping, sun, port-a-potties, lots of human contact, germs and heat are difficult to navigate for a Lupie. I have tools for trying to stay healthy during this event that help but I usually have some level of fall out after this event.
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| Tamra and Kenny |
the swollen growth that showed up on the right side of my neck (please see previous blog post for details). This year, I thought I was doing pretty well, I had my sun screen, my parasol, my hand sanitizer, my wide brimmed hats, my medications and vitamins, earplugs ( to help with sleeping)... it just wasn't enough.
With all of the people, the hugs, the sharing of snacks, I came down with a nasty summer cold including the deep cough, runny nose, etc. That in itself would have enough, however my body's immune systems's response is to attack the lungs and sinuses. This caused my lungs to hold onto all of that mucus and not let go. My husband also got this nasty bug, but only missed one day of work and was over it in about 4 days. Lucky guy. I, on the other hand, was extremely sick for several weeks, had a late night trip to UrgentCare, got four prescriptions, and missed several days of work. It's been exactly one month and I am still using an inhaler and still coughing up Smurfs. I'm so much better and very close to being finished with this
With Lupus there are always trade offs, compromise and consequences. Lupus have to choose wisely. However, this event and these people are important to me and I will most likely keep doing it and each time I participate I learn how to better compensate for the Lupus, but its still a challenge each time. I have given up so many things already, I really don't want to give this up. So I keep trying and preparing ahead of time, and recovering after. This group of people renew my heart each year and I don't know what I would do without them. This is part of who I am. Thank you Alter Abled Access Advocacy, you make my heart happy and I love you.
With all of the people, the hugs, the sharing of snacks, I came down with a nasty summer cold including the deep cough, runny nose, etc. That in itself would have enough, however my body's immune systems's response is to attack the lungs and sinuses. This caused my lungs to hold onto all of that mucus and not let go. My husband also got this nasty bug, but only missed one day of work and was over it in about 4 days. Lucky guy. I, on the other hand, was extremely sick for several weeks, had a late night trip to UrgentCare, got four prescriptions, and missed several days of work. It's been exactly one month and I am still using an inhaler and still coughing up Smurfs. I'm so much better and very close to being finished with this
adventure.
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| The Crew of Dragon's Head |
With Lupus there are always trade offs, compromise and consequences. Lupus have to choose wisely. However, this event and these people are important to me and I will most likely keep doing it and each time I participate I learn how to better compensate for the Lupus, but its still a challenge each time. I have given up so many things already, I really don't want to give this up. So I keep trying and preparing ahead of time, and recovering after. This group of people renew my heart each year and I don't know what I would do without them. This is part of who I am. Thank you Alter Abled Access Advocacy, you make my heart happy and I love you.
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| Rick and Alea |
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| The Dragon's Head - Home of Alter Able Access Advocacy |
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| Morgan, Will, Someone hiding behind glasses, and Jennifer |
