August 18, 2010

Sodium Girl Guest Blog - Part 1: The Detour

We bring you the first part of Jessica's guest blog today. To read more about Jessica, please visit our previous entry.

Let me introduce myself. My name is Jessica, I have Lupus, and I am a girl on a mission. I join the LFA blog to report from the front lines, as an active 27-year old who, even after 7 years, is still learning how to manage this disease while giving myself the full, healthy, exciting life I want and deserve.

Everyday brings its own set of successes and challenges and I know this journey is a long-term adventure, not just a short road trip. So I invite you to tag along and I hope my story, my shenanigans, and maybe some of my recipes will speak to the ups and downs (and in betweens) you also travel. Maybe we can make some fun pit stops along the way.

The Detour:

In 2004, I was a junior in college, on a clear track to normalcy. I had just finished a semester abroad and was eagerly counting down the hours until I would return to campus, set up my dorm room (hello IKEA), pick my classes, and start my typical, American life again. But little did I know, someone else had very different plans and the path I thought I was on was about to take a sharp turn.

The changes began with an artichoke. I haven’t admitted this to very many people, but it’s true. For my whole life, I had been “sick.” When I was thirteen, I was diagnosed with possible JRA, but none of my blood tests were conclusive. I dealt with joint pain, exhaustion, migraines, and other symptoms on a daily basis and I had built quite a tolerance to it all. So when new symptoms crept up, I usually just added them to the basket of what was already there.

But lately, something seemed off. I didn’t know what was wrong, but I knew I didn’t feel well and more importantly, worse than usual. The problem, however, was that I couldn’t point to an arm, or my chest, or my head and say, “Here. This is where it hurts.” The feeling of discomfort wasn’t in one place. It was everywhere. And all I could say was that I felt lousy, drained, and a whole host of other descriptions that barely touched the reality of my symptoms.

All these unexplainable feelings hit their climax one night, over a family dinner – the first since I had been home – when, overwhelmed by unknown discomfort, I chucked a steamed artichoke at my dad. Everyone thought I was crazy. I thought I was crazy. And then, finally, a tangible sign.

I came home that evening with almost twenty pounds of water weight on my frame, liquid literally dripping from my lips and my eyes swollen shut. I was whisked to the hospital where I learned that Lupus was aggressively attacking my brain and kidneys. One week, six seizures, and a pair of failed kidneys later, I realized I would be moving into the hospital for the semester and not my two-room double...

Come back tomorrow for part 2: Not in Kansas Anymore. In the mean time, visit Jessica at her blog -


Johnni said...

Thank you so much for sharing. I am 28 years old and was just diagnosed with Lupus last September. It's been a rough road so far. People tell me you can go into remission, but I have yet to experience that. I was tested for Lupus at age 16, but the blood test were inconclusive so they said it was negative and sent me on my way. For years I have had the same symptoms you did, body pain, chest pain, bad migraines, tired all the time and since I had hypothyroidism I just figured it was part of that, it wasn't until I started blacking out and my whole body swelled to 3 times it's normal size that we knew there was a problem. Anyways, it's been a long journey so far and they have found A LOT of other diseases that have attached themselves to me because of the Lupus, but I'm still trying to best to live as normal a life as I can. It's just nice to hear from someone that is my age so thanks again.

Sodium Girl said...

Dearest Johnni -

The best part of my job is hearing from people like you and knowing that, I too, am not alone.

As for your comments, I find the word "remission" to be a funny term. Like "pain" and "exhaustion," words that resonate differently for everyone, "remission" means something very different to those living with a disease like Lupus.

I may be technically in "remission," but I don't tell people for most will assume that means I'm cured. The truth is, though, that while my Lupus is quiet (and not attacking my major organs - phew!), it continues to actively participate in my life. Whether it is chest tightness, migraines, the constant feeling of having the flu, or like you said, a slew of other conditions that have arrived as a result of the underlying disease, everyday still brings its own challenges.

So what do we do? We own it! One of the best pieces of advice I've read comes from Kris Carr of when talking about a disease, rename the terms you don't like. So let's forget about remission and pain and exhaustion and come up with something different, something that describes our day-to-day as we want it to.

I use the Spoon Theory (which, if haven't read, you should Google immediately!) to explain to people my level of energy. And when people ask me about my Lupus, I just say I'm managing it. I'm still thinking of a goo substitution for remission, so if anyone out there has other ideas, let's hear them.

Thank you again for your comment and I'm glad to hear that despite the roadblocks and blood tests and other fun detours, your spirit remains high.

All the best