Chronic Pain,  Fibromyalgia,  Health & Wellness,  Lupus (SLE),  Mental Health

Introductions All Around

This blog is about life after a chronic illness plays merry hob with your hopes and your fears and life during the terrible and wonderful process of recovery.

My name is Jenn. Jenny to my mom and some of the folks who knew me back when I was little and scampering around Sandy Point in Northern Vermont. My mom also called me Pearl and Bunny. She still does from time to time and it doesn’t fail to make me stupid with that sweet kind of happiness that causes my heart to clench and my eyes prickle and threaten tears. I am 45-years-old this past November. Middle age is a strange country that I haven’t quite settled into yet. I suppose it’s time to unpack my bags and put my feet up because it doesn’t look like middle age is going anywhere for awhile. I self-identify as a cis female and prefer she/her for my gender pronouns. When I think about sexuality I identify as pansexual. I don’t know where I am on the Kinsey scale and I don’t much care. I am married to an incredible man. His name is Jamie. We tripped over each other when I was 35 and he was 33, both of us working in a homeless shelter. We have been married for 10 years this October. Jamie makes me laugh every day and holds my hand in his sleep. We have a cute but perennially simple dog. She is named River after two of our favorite Sci-Fi heroines, River Song from Doctor Who and River Tam from Firefly. We are unrepentant nerds.
I have a master’s degree in Social Work and up until August 2015 I was working full time with U.S. Veterans and families. I loved my job. I came to Social Work late, got my master’s from The Ohio State University in 2012 and my social work license the same year. I write and tell stories. I have done that since I was a girl. The first short story I wrote down was about vampires attacking people in a graveyard. I was nine-years-old. I had composition books bursting with ridiculous, mopey poetry during my teenage years. I have written a book under a nom de plume which has yet to be published. I have published poetry and journal articles. I find a great deal of joy and relaxation in writing fan fiction, it’s the grown-up version of playing with dolls. I adore words. They’re nifty. I think stories are one of the ways we learn about ourselves and each other. Regardless of the story’s origins, truth or fiction, good tales always carry the weight of reality in their heart. I knit. I cook. I guess I just like to make stuff.
I am a big ball of autoimmune issues. I have vitiligo. The first small dot of white showed up on my left hand in 1988, the year I graduated from high school, now 75% of my body is as pale as milk. Jamie calls me his beautiful palomino. I love that guy. I was diagnosed with Thyroid Disease (hypothyroidism) in 1998 or 1999. I can’t remember the year only that the doctor told me it was an autoimmune disease. I got confused and thought he meant acquired immune disease and spent a solid 24 hours freaking out about HIV until I asked my mother, the nurse, and she corrected my erroneous thinking. I was an idiot and at the time the internet wasn’t nearly as prolific. Was there even a Web MD then?
I was diagnosed with SLE (Systemic Lupus Erythematosus) in 2005. I had been training for the Columbus, Ohio marathon. The day after a 13-mile training run I couldn’t walk and my ankles had swollen to the size of grapefruits. Six months later I sat in a rheumatologist’s office and learned about SLE and its roll in my life.  My only other experience with Lupus was a horrible 1989 film called Gross Anatomy. Christine Lahti’s character dies from complications related to Lupus Nephritis. I was terrified. It turns out that SLE is a ludicrous disease. No one can tell you what causes it or what it will do to your body. It just happens, like the weather, forecasting be damned.  My symptoms include joint pain, joint swelling, muscle pain, rashes, fevers, fatigue, brain fog, headaches, cold soaking sweats, and numbness and cold in my feet, hands, and nose. The pain sucks, but the cold nose is by far the most annoying and uncomfortable. They say depression is also a symptom. I think the depression comes from feeling like your body is the Bastille and your immune system is an army of pissed off French peasants.
I was diagnosed with Fibromyalgia in 2013. My Rheumatologist told me Fibro and SLE go together like a Klingon and their Bat’leth. My reaction to the Fibro diagnosis was dubious, at first. I did not know anything about the disease. My SLE was under control at the time with a low daily dose of Prednisone and I was in a great deal of pain that wouldn’t quit.  I held some of the common misconceptions and prejudices regarding Fibromyalgia. I thought it was a “fake” disease, something that doctors used as a throw-away diagnosis when they didn’t know what else to call something and couldn’t write “hysterical woman” on their billing forms. I researched diet and exercise and began practicing Ashtanga Yoga daily. I stopped eating gluten. I lost 40 pounds. I quit smoking. I was healthier than I had been in years. I was in great shape. I could stand on my head and bend myself into a piece of human origami. Things were good. Better than good. Things were great.
The year 2014 brought two significant job changes and a bout of depression for me as one of the job changes was precipitated by a large degree of unpleasantness with a coworker. The friction stemmed from taking three days off as a result of an SLE flare.  I developed a case of Shingles in May 2014 and while the rash abated in a week, the intense burning itch beneath my skin persisted until January 2015. The bouts of discomfort reminded me of the Rudyard Kipling story about the how the Rhinoceros got his wrinkled skin and I began to wonder if I had somehow managed to upset a Djinn somewhere along the way. My mother-in-law died in August 2014 and the couple with whom my husband and I owned our duplex announced they were moving to Japan in early 2015. It meant we would need to sell our home because Jamie and I could not support the whole mortgage on our own.  It was November 2014, I was visiting my mother, getting ready to start the second new job in a year and got a call from my husband. The conversation went something like this:
     Jamie: Hey, did you know that —- and —- were planning on moving to Asia?
     Me: Ah, no.
     Jamie: Well, they are.
     Me: Well, shit. I guess we’re going to have to sell the house.
They say that SLE and Fibro flares are triggered by stress and there was plenty of stress to go around, but I held up well for the most part and the boat stopped rocking once we moved into our new home. We bought my mother-in-law’s house and it turned out to be the smartest move we had made in our marriage. The day we moved in I told Jamie over take away Vietnamese that marrying him was the wisest thing I had ever done and buying our new home ran a close second.  We spent late February and March 2015 nesting. We painted and bought new furniture. I became obsessed with mid-century modern design. We started watching DIY shows and I became addicted to Houzz ( It was a good time. There was one small hiccup and in my mind, this is when everything started to go to hell. Mid-March I suffered my first migraine. I had experienced “lupus headaches” after being in the sun too long, but nothing compared to the nauseous, light sensitive, floating black spot pain that caused me to pull over and vomit twice on the way home from work.
The downhill slide picked up steam in April 2015. I would come home from work exhausted and in pain. Bed time got earlier and earlier until I was climbing into bed at 8:00 PM so that I could be functional at work the following day. My experience with chronic pain increased exponentially throughout the week and by Friday night I would collapse. I spent each weekend sleeping. Trips to the movies or the shops or even a night out to dinner stopped. I had no energy. I emailed my Rheumatologist over and over again asking for advice and was told that it was all related to Fibromyalgia, which just happened to be the focus of his current research. He wrote that the low-grade fevers and the new butterfly rash on my face would go away. I just needed to be patient. August 2015 found me home from work. Daily low-grade fevers, challenges with balance, confusion (that pesky brain fog), debilitating joint and muscle pain, fatigue, cold sweats, numbness, and brutal headaches made work impossible. My Primary Care Doctor sent me to a Hematologist. The Hematologist did every test imaginable and came up with a Vitamin B deficiency that was most likely autoimmune in nature. Jamie started accompanying me to doctor appointments because I was too weak to drive. I worried over my use of pain medication as in the past I was able to make one month’s worth of Tramadol last for five or six months at a time. Now I required it daily to stave off the neuropathic pain. I took it according to instructions and made due in between doses with baby aspirin and ibuprofen. If I worried about becoming addicted I would watch an episode of Intervention and reassure myself that I was not an addict.
I have been working at least part-time since I was 16-years-old and full time since I was 19 years-old.  This is the first time in my adult life that I have been off for longer than a typical one-week or two-week time period.  I have not worked a full week since August 2015. Jamie and I made the decision on February 29, 2016, after an honest and candid conversation with my supervisor, that I would change my employment status to contingent so I could focus on getting well.  My supervisor has been and continues to be a supportive, compassionate person whom I admire for her strength, her professionalism, and her support. Jamie, my mother, my extended family, and my friends have been incredible.  Jamie’s support has been unwavering.  He cooks and cleans, takes care of me and the dog, loves me, picks up my medications, rubs my head when it hurts, brings me toast with jam and perfect cups of tea. He did not flinch when I sat down next to him and started to cry on Monday morning as I told him that continuing to try working was no longer realistic. He held me and said that while he knew that this was a possibility that I had needed to come to this decision on my own. He took the day off and mourned with me as we tried to figure out what losing an income was going to do to our little family. My job is no longer to guide others through the recovery process. My job is now to recover.
I am three days into my new job after seven months of a daily battle to see if each today would be the day that I would feel better.  I am now tasked with re-imaging my day-to-day life where all the tools of my profession are focused on me. It is weird and uncomfortable. I would much rather be doing this for someone else. It seems much easier to recommend looking for second opinions and alternate treatments then it is to actually have to do these things.
I am heartbroken. I mourn my work life. I miss the bustle of the clinic and chatting with my office mate. I miss laughing with the nurses on my teams and being present for the patients. My life is remarkable now in it’s differences from my imaginings and my hopes.
This blog is about life after a chronic illness plays merry hob with  your hopes and your fears and life during the terrible and wonderful process of recovery.
Welcome. Thanks for coming along.

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