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If you’re going to SXSW, I hate you.

OK. That’s not true. I don’t hate you. I actually envy you. What I hate the fact that I planned and saved since August and now I can’t go.

I’m sick.

Actually, I’m always sick. I’ve been battling chronic lyphedema since I was 18 years old. Lyphedema is the buildup of lymph fluid in various parts of the body. Usually, lymphedema is a symptom of something else. My case was special because nothing happened. I just woke up one morning in college and couldn’t walk. I couldn’t control what was coming out of either end of my body, I had a raging fever and one of my legs was three times its actual size. The ambulance took me to Naval Portsmouth Hospital and I stayed there for two weeks. None of the three billion doctors and interns who examined me knew what was wrong. Well, they knew I had an infection but they couldn’t tell me why. They gave me antibiotics, crutches and told me I probably had athlete’s foot gone wrong.

Well, THEY were wrong. I have lyphedema and no doctor I have ever seen knows why. I’m not morbidly obese. I don’t have diabetes. I don’t have any forms of cancer or physical trauma. At this point, it’s about maintenance and prevention of infections. I go for months with no pain and then I wake up to legs that won’t work. When I tweet ‘Working from bed today” it’s because I can’t make it the 20 steps from my bed to my desk.

Don’t Feel Too Bad For Me

With the exception of when I have infections, I don’t have it too bad. If you google lymphedema, I don’t look like any of those cases and I thank God for it every day. I can walk on 90% of the days. I know how to take care of myself. I have doctors who put up with my stubbornness and offer me pain meds for the days I need them. I do see the inside of doctor’s offices and the ER a lot more than most people, but nowhere near as much as my friend who has Lupus. Most people don’t even know I’m so chronically ill at all because I generally don’t talk about it. Seriously, the thing that reminds me I’m not like everybody else the most frequently is when I do my weekly pedicure. If I go to a shop it’s possible that some sort of bacteria can be on the tools they use. Skin breaks a lot easier than you’d think and anything that gets inside my bloodstream can give me an infection that can kill me. And professionally painted toes are just not that serious.

For the most part, I live with it. But this January and February, I had several infections back to back and then my doctor wanted to perform surgery to release some pressure he thought was from a blockage in my right leg. I had an outpatient procedure and then bed rest for two weeks. The bed rest was the hardest part of it because my husband is still in NYC and my family is in Virginia. Also, I hate staying still or being confined. But I made it through with just a few problems because I actually made friends with a neighbor who took over my dog-walking chores and I was able to vent through it all on Twitter. (Thank you for listening, by the way.) This week I started my physical therapy to strengthen my legs so I’m just happy to be out and about again.

But I can’t go to SXSW.

I’ve known I couldn’t go to SXSW since February. My doctor told me that going to the conference so soon after the back to back infections and the complications would be too hard. The constant walking and standing would be detrimental to my health. Also, he wanted me to go to physical therapy twice a week for six weeks and then try a few more things he think might help.

Look, I’m all about fighting this disease. I’ve learned that doctors don’t know everything but they sure know more than I do, so I need to listen to them. But I want to go to SXSW. I already spent $475 on a ticket and even if I made millions a year I’d still cringe over $475. Call it cheap, call it my modest upbringing, that’s a lot a lot money to me. I also spent over $300 on a plane ticket to Austin. (How come it cost more to fly from the Midwest to the Southwest than from the Midwest to the East Coast? We should look into that.) And I had a hotel roomie who was going to help me split the cost.

But the real thing I was looking forward to was actually seeing all the people I spend my days with online in all their real life glory. I wanted to actually touch some of these people I stalk through social media. I wanted to shake hands with bigshots. I wanted to pick up swag. I wanted to . . . do whatever it is you do at SXSW. I wouldn’t know exactly what that is because I’ve never been. I was going to lose my SXSW virginity as I got on a plane on Friday.

Well, I guess I’ll have to stay a virgin. Because on Friday, I will be home trying to ignore all your excited tweets and blog posts from the big show. Not because I’m bitter. OK, let me stop lying. I’ve been talking about this for almost a year. I’m a little bitter.

I am thankful for the small things. I transferred my pass to someone for the cost I paid plus the transfer fee and got most of my money for my plane ticket as a credit toward future travel. And my lovely supposed to be SXSW roomie refuses to let me pay for my half of the room anyway. So at least I didn’t take a bath on this. And there’s always next year, right? Or at least that what I keep repeating under my breath as I read about the wonderful time you’re all having.

But if you are going to SXSW, could you do something for me? If you have a moment, turn to someone at a panel, a party or just at breakfast and say “This is so awesome. But it’d be so much more awesome if Princess was here.” And next year I promise to make good on that.

Are you going to SXSW? What are you looking forward to the most? It’s okay. I promise not to be too jealous to reply to the comments.

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Princess Jones

Princess Jones is the mad scientist behind Diary of a Mad Freelancer. For more talk about freelancing, writing, and selling yourself for a living, follow her on Twitter.

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