Living Every Day with Autoimmune Diseases
It’s been about 15 years now that I’ve woken up feeling hungover. Sound crazy, or maybe like I have a “problem”? I’m not in denial, I do have a problem, but it’s not with alcohol. I have 4 problems, and they’re all under the ugly beast of “auto-immune diseases”.
Polymyositis
Sjogren’s Syndrome
Raynaud’s Phenomenon
Scleroderma
If that all looks like a list of strange and foreign words, it is to me as well. I am not alone in the world of Lupus where each diagnosis is a unique and exotic mix that is specific to the patient. Rarely does Lupus run by itself, it likes to bring along its annoying friends that are very difficult to recognize and diagnose. After 15 years of doctor’s appointments, countless surgeries, and many unpleasant tests – this is my own personal exotic diagnostic cocktail.
I won’t talk about each one, or what it means – because really, who cares? What really matters is how each of these little gems affects my every day life. Auto-immune disorders are very difficult to diagnose, because really it’s a bunch of inconveniences. Unless you’re really in touch with your body, it’s easy to blow-off symptoms. Just ignore them, and hope they’ll go away, until something really awful happens. For me, it was my Lupus & Sjogren’s manifesting themselves in my lungs – which took 2 years of complaining to my PCP about a cough, 5 different inhalers, 3 X-Rays, 2 rounds of pneumonia, a CT scan and finally an open lung biopsy to diagnose active auto-immune disease rampaging my lungs. I canned the PCP, lost 30% of my lungs to Pulmonary Fibrosis and am on an aggressive immune suppression therapy to quiet the chaos. So what’s an annoying cough to someone else was life threatening for me.
After finding the right combination of doctors (I call them the “Dream Team”), I am feeling much more like my old self. I’m not crazy about all the meds I take, but they really are making me feel better. My voice is stronger (yippee) and my cough is not as frequent. I have much more energy for my kids, and doing the things I love – like cooking and traveling. Things just seem a little easier when you’re not struggling with huge organ issues.
What is living with auto-immune disorders really like? To make it more real, I thought I’d do a little Facebook style list:
“25 Random Things About A Day With Lupus”
I start every day with 8 pills, and take 3 more later in the afternoon when my stomach can handle it
I am always tired
The sun is not my friend, and I’m always covered up
Sleeping is hard, because I’m uncomfortable laying in one position
My skin is very uneven
I cough all day (annoying myself, and pretty much everyone else around me)
My skin is thick, so getting an IV is difficult. On the flip side I have no problems with mosquitos
The skin on the tips of my fingers split at the slightest annoyance
I can’t be in a room with strong perfume or odor without breaking into a horrible (as in EVERYONE is staring) cough
I can’t walk up more than a flight of stairs without resting
My eyes are very light sensitive
Most days I come home from work & sleep for an hour before I tackle dinner
I am dry everywhere – I am never without a water bottle and lip balm
My muscles fatigue so easily, I sometimes have to blow-dry my hair in 2 installments. My arms poop out too soon.
I apply sunscreen every morning
I have my blood drawn once a week to check all my organ functions
Noise startles me
My fingers turn wax white if I grab anything out of the freezer, so I need to be super quick
I wear mostly flip-flops, as the skin on my feet is so sensitive I get blisters after an hour in shoes
I leave for meetings early so I can sneak a nap in my car when I get there
I save my words – because if I speak too much (which is part of my job), I will lose my voice
My hands & wrists hurt all the time, so I have terrible handwriting
I can’t chew for very long, so bagels & power bars are out
I’m suspicious of even the slightest sneeze, as getting sick isn’t an option
Worst of all, I wake up every morning feeling hungover.
If this list seems depressing, it’s not. It’s the every day hurdles that so many people face in silence. My life is full, and exciting.
I own a successful business, volunteer at my local school, am an active member in the Entrepreneur’s Organization (EO), have been married for 22 years and have two beautiful children. If you met me, you would never in a million years guess I had any of these problems.
May is Lupus Awareness Month. Do something special and sponsor someone for a local Lupus Walk .
Every donation (large or small) brings us closer to a cure.
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Maureen is one very busy gal! She has a tremendous outlook on life that exudes an adventurous fervor, a thirst to learn and challenge herself – all tempered with a bright smile and great sense of humor. Her business is Birdsall Interactive, you can find her on Twitter as @birdsall and on Facebook, too. Check in on her – she’s a wonderful source for inspiration!
