Most people get sick and after a day or week in bed of sheer hell, their body wins and they go on with life.
People with chronic illnesses aren’t so fortunate. I have Lupus and I hate it!
Before I got sick, I worked from Spring thru Fall on sport-fishing boats. I deckhanded on some of the best boats in Westport: Advantage, Ultimate, Northern Star, Slammer, Scooter, Fury, Fortuna, Rampage, and of course, my favorite, Spindrift. After a decade of working the deck, I got my Master Mariner’s License for 100-ton! Woooo Hoooo!
In the winter, from October to February, I worked in the woods as a Spawning Ground Surveyor. It’s tough work crawling thru woods along raging rivers, snow, wildlife; but, I loved it!
But, by the summer of 2011, I was seriously having trouble with my elbows. 8 doctors (aka Quacks) told me it was from a car wreck and I had “tennis elbow.” “Here, have some steroid shots and go home. You’ll be fine in a week or so,” the doctor/quacks told me. “You’re faking it” was one doctor’s answer after I paid cash for an MRI to figure out WTF was going on, “you just want pain pills.” (Why the hell would I pay for an MRI if I just wanted pain pills? Quack #1 dished out pain pills like candy.)
By 2012, I wasn’t able to walk. A trip to my sister, Diane’s, and she found out I couldn’t walk, too, and she said, “Maybe you have Lupus?” I had never heard of such a funny-sounding disease before (dis-ease – not at ease…good word for this hell I was living).
I got a blood test and wallah! There it was. The positive RNP and ANA results confirmed I had Lupus. To me, this was the BEST news ever! Why? Because after 2 years of being told I was a liar, fake, druggie, loser, lazy, etc, I finally had a name for my living hell AND I had something I could fight! You can’t fight something if you don’t know what it is.
I got Prednisone and with a week, I no longer had to crawl around my house. I could walk! I could lift and bend and go on hikes again. I could go back to the docks!
I made it through 2013 decking most days – although, if it hadn’t been for serious friends stepping in to give me a day off to rest, I would not have made it. (Thank you to Janell, Matt, Carol, Victor, and the others.) I was familiar with the pain of Lupus, but hadn’t realized how the other symptoms were such a major part of my life:
- Extreme fatigue (tiredness)
- Painful or swollen joints
- Anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
- Swelling (edema) in feet, legs, hands, and/or around eyes
- Pain in chest on deep breathing (pleurisy)
- Butterfly-shaped rash across cheeks and nose
- Sun- or light-sensitivity (photosensitivity)
- Hair loss
- Abnormal blood clotting
- Fingers turning white and/or blue when cold (Raynaud’s phenomenon)
- Mouth or nose ulcers
So, it’s now 2015. March. I no longer take Prednisone as a daily routine. I gained 35-lbs on this drug. It made me meaner than a pole-cat, and I didn’t sleep for days. (I love to sleep and it’s hard enough.)
My sweet amazing family doctor is my only help for my disease as the closest rheumatologist is 1.5 hours away (that’s one-way). With being this sick, I can’t work on the boats or walk in the woods for work or fun. Hell, some days I can barely get dressed.
Today is one of those bad days. I barely got out of bed and it’s 3:24pm and I still haven’t gotten dressed. I need to go to my new job, fixing fishing reels, but I seriously can’t.
I have a friend coming to visit today. I also do graphic work, logos, websites, flyers, etc. He’s coming to fine-tune and finish his mico-beer brewery logo. The great thing about Mike (and his adorable wife, Lia) is they don’t require anything from me. They visit, but know my limitations and leave me be. Thank Yehweh for precious people like them.
I’ve made Mike’s bed up for him and that am writing my blog post…but that’s about all I got in me. That’s good enough….right?
Lately, the Lupus is taking a back seat to the new and more painful Degenerative Disk Disease. My neck and lower back disks are crushing my nerves. I’m ready for the spinal shot my friend, Tommy, recently got for this same condition. I just don’t think I can deal with the pain any longer.
Today, I’m here. Today, I have my bills paid and food on the table for me and my animals. Today, I’m gonna be okay.