Family Reunion number 38?

I think it's 38 anyway. Lupus Fog. 
I got back from an amazing weekend of camping, tasty food, lots of hugs, and a ton of silliness and merriment.This event has been a tradition in our family since my early teen years and we all look forward to it every year. Camping? with Lupus? you may well ask. Yes, I went camping (sort of) and of course Lupus followed along as ever it does.

  


Lupus changes how you participate in outdoor activities and also what "gear" you bring with you. I had lots of sun screen, scarves, hats, long sleeves and pant legs, and one very cute parasol. I really wanted to go swim in the river with the kids, but there just isn't a safe way for me to do that. (I'll have to work on a solution to that) My Dear Husband wasn't able to join us this year so I was on my own and not willing to try to do the physical tent set up, gear lifting, etc. by my self. I figured it would be physically difficult any way, so why tempt "the wolf". I also didn't actually try to sleep at the campsite. I drove to my sister's home (thanks Mary!) and slept on her very comfortable couch. I know it seems silly to call it camping, but that's how I need to roll these days. If I can't rest and actually sleep, then Lupus puts an end to the fun really quickly. It mostly worked too.  

After making sure I can stay out of the sun and finding a place I could sleep well, I then had to take into consideration the heat, food and chance of infection/illness. The food is not an issue, because my family are all amazingly healthy and really good cooks. Other than the S'mores, I can honestly say that the food was spectacularly good and extremely healthy. Since I despise marshmallows, I can avoid the obligitory S'more just fine. Then just making sure I don't share cups, etc, and stay away from anyone showing signs of illness at all. Unfortunately one of my siblings was unwell, which meant no hugs and keeping a bit of a distance, which I have a hard time doing. I'm a hugger. 

I think I did pretty well with the preparations before hand, resting to charge my batteries in advance, keeping up with my medications, and the safety habits implemented during the event. Also, because it's only a couple of days, it seems the Lupus "fall out" didn't hit until the drive home. I had a drive of about 5 hours to get home. Even with the rest stops, my body started to get stiff and my connective tissue inflamed. I had to stop for coffee to stave off the fatigue. Once home, sleeping in my own bed and resting is the best medicine. However, I had to start back to work on Monday and work all week. I'm just starting to feel like the inflammation is reducing and it's Thursday. I have one more day of work and then I have a weekend at home and I won't be doing anything but recovering, and maybe doing a load of laundry or two.  

I think this was a success. I got to participate with my amazing family in a tradition that meant so very much to our parents.  I love that we still honor them and carry that torch.  It was a fair trade for being able to still be me, not to lose that piece of who I am.  And here's the thing, I'm getting better at it all the time.  

I'm going to end with a big huge thank you to my friends and family, who try to learn about Lupus, who ask thoughtful questions about what it means to have Lupus, who make accommodations that allow me to participate in the family gatherings, and social events. To those who love me without judgement and in spite of this disease. You cannot know what your loving kindness, understanding, inclusion and acceptance means to me. My family is amazing.


P.S. At our family reunion, my niece Anza and her lovely friend, Sonja, interviewed me for their podcast. Learn about their Sex, Drugs and Sustainability PodCast at https://www.facebook.com/SexDrugsAndSustainability 
They are doing good things.


My interview should be coming out in October.  
Spoiler Alert: I ramble.