Sunday, December 18, 2011

A Letter to S.L.E.

Hello Lupus,

My name is Allie and it looks like we are going to be living with each other from now so I thought we’d get to know each other a bit.

I googled you; that was a poor choice. You are scary on the internet. Your complications seem endless. So instead I think I’ll focus on dealing with what you are giving me so far.

Fatigue. Thanks for that. As if working night shift, going to school full time and having two kids at home wasn’t tiring enough you thought it would be fun to knock my ass out on my days off too. I guess I’ll just learn to embrace my new dirtier house look.

Joint and Muscle Pain. I especially like how my joint inflammation is in my hands and my spine. My Spine! Really, you couldn’t pick something I don’t need like my left knee or something? No, well I guess my T8-9 and I will get used to you flaring up and causing us the inability to lift small children or bend over without wanting to scream. So far, your muscle pain is manageable so thanks for that.

Skin Problems and Ultraviolet Light Sensitivity. Oh for the love of butterfly rash, random mouth sores, bumps under my skin and strange discolorations. Blue finger tips in the cold and bad feet circulation…no thanks. Other than the mouth sores we seem to be doing ok but seriously, having mouth sores on Thanksgiving due to stress was just not cool so you better not attack again at Christmas. Thank you very much. The sun sensitivity is manageable and the reaction to it is not severe yet so at least there is that but the eye sensitivity and dryness pretty much sucks. Just saying.

Lung Inflammation. Now I know you can inflame anything and I am super thankful that you didn’t pick my heart because that would be scary but having the constant pleurisy is a little concerning. Hopefully the new NSAIDS will help to battle you down. I miss breathing without pain. I really do. Other than spinal pain, your attack on my lungs is the must unsettling.

Kidney Distress. I like how you distress my kidneys and you also require me to take medication which distresses my kidneys…you are a tricky little bastard aren’t you.

Then there is the random worry factor…will I develop a heart problem, will my kidney function or liver function get worse? Will my hair start falling out again? Will I develop fever? Will I randomly gain or lose weight? What if I get edema or vascilitis? Will I have swelling again? Will you give me another bad batch of Anemia? Another bleeding ulcer? Another day of headaches? Will you go after my nervous system and make my hands shake again?

You make me worry. Which is kind of ironic if you consider that the things that they say trigger you are stress, not eating, physically over doing it, and lack of sleep. Oh and the weather, you can also be triggered by the weather. I love having a few “act of God” triggers to worry about to. So now I pray, sleep, eat, rest, medicate, and wait…

But, we’ll be ok me and you. It’s going to suck sometimes but they say if I stay on top of you I’ll still live to be 80 something or more. I’m going to live to be 100 just so I can change that statistic for the next poor bastard who googles you. I like a challenge. I am not a symptom list and once I get your cycles down I think we’ll manage alright. I’ll learn to accept things differently then the way I expect them and to ask for help and you’ll learn that you can’t stop me if I put my mind to something. And I think that’s all I have to say to right now. Welcome to my body… try not to trash the joint because you have to live with the mess you make. Love, Allie

**For more information on Lupus please visit where you can learn from a trained professional**

For the record- Lupus is an autoimmune disorder which causes your body to flare up causing your immune system to attack itself sort of like an invading illness. The attacks cause flare ups and chronic inflammation. And any technical information on lupus can be found on the link above or at WebMD by searching for Systemic Lupus Erythematosus (which is the kind I have)

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