Dance of the Firefly

 I worked a double shift today.  Only few hours into that double, my husband informed me that both he and our younger son were diagnosed with bronchitis.  This on the heels of our older son’s sinusitis diagnosis.

With 3/4 of the people in the house on antibiotics and in bed, here I sit on my back deck, in the black of night, alone, with every passing moment drawing me nearer the witching hour, praying that the nagging ache in my back, hip, and leg quiets enough that I may sleep sometime tonight, and I catch, out of the corner of my eye, the momentary flash of a lightning bug.  I can’t help but smile.  

Do you remember, when you were young, spending an evening catching lightning bugs with the neighborhood kids?  Did you put them into a jar with holes poked into the lid so the bugs didn’t suffocate?  Did you release them in the morning?  I do, and I did.  I would even put blades of grass and small twigs into the jar so the lightning bugs had something to do besides sit on the floor of their prison - tho, I didn’t realize as a child how cruel it must have been for the bugs. 

I spent my earliest years growing up in one of the fastest declining urban areas in the country, but you don’t understand such things when you are wrapped in the protective blanket of innocence in youth. Our small intercity lot had a plum tree in the far corner of the back yard, a pear tree so close to the house that my brother would reach out his bedroom window to snag a fruity snack, and a raspberry bush behind the garage that we raced to in the mornings during their season to get to the berries before the birds did.  We were blessed with great neighbors on both sides, and just past the house to one side of us was a wooded area with a tiny walking trail and vines we had no business swinging on but did anyway. Across the street was another small cluster of trees flanked on one side by a vacant lot and the other by a small field that no one claimed and, thus, was never mowed.  Doesn’t sound quite urban, does it?

Most summer nights that small, unkempt field, the little wooded area, and the empty lot magically manifested into a stage, a theater in which one could witness a dance as old as time - the dance of the firefly. Our front porch was a prime location to watch the one of nature’s finest masterpieces. I would sit on that porch mesmerized, watching the myriad of tiny lights pulsing in and out, floating as if tossed by gentle waves. Few moments in my life seemed as peaceful as sitting in the dark watching my own private lights display. 

I live suburban now, in a condo community with lots so tiny that if I stood between two houses and reached my arms out I could touch each simultaneously, and lightning bugs are a rare sight indeed. And yet, every now and then, I catch a fleeting glimpse of yellow in the darkness that surrounds me, reminding me that there is still something good, something bright, and something simple that can bring only joy into the night of my world - the dance of the firefly. 

All I Did Was Get Out of Bed: weeks 3&4

Saturday April 3:  Got my ass handed to me at work today.  Feeling rough no matter what pain-controlling measures were attempted.

Sunday April 4:  Easter.  The day Christ was resurrected.  I believe in a God of miracles.  Maybe He’ll see fit to work a miracle for me and resurrect my broken body.  Or not.  Today sucked.  After running my tail off yesterday, I am REALLY hurting.  Even the smallest movements cause crazy pain.  Thankfully, today was much less busy and I was able to skip out a couple of hours early.  Not sure how tomorrow’s overtime shift is gonna go.

Monday April 5:  Feeling somewhat human today.  Donated blood.  Worked an abbreviated OT shift.  Maybe there’s hope that I may stabilize at some point.

Tuesday April 6:  My only day off this week.  Feeling OK.  Been walking the dog for the last week and today took her for a longer walk at a park.  Def felt the stiffness afterward, but the pain has calmed down quite a bit overall.  Do I dare to hope?

Wednesday April 7:  Doing alright.  Last night was the first that I was able to roll over in bed without the lightning bolt in my back – though, it still didn’t feel great.  Pain has concentrated to left side.  Wore the TENS unit to work but hardly used it.  Still taking meds on the regular.  Work didn’t kill me.  Def improving.

Thursday April 8:  Still can’t move very quickly, and still need to pay attention to how I move, but the pain is much better.  Took the TENS to work, but never put it on.  Still taking NSAIDs.  Progress!

Friday April 9:  See above.

Saturday April 10:  Woke up feeling OK.  Still taking meds preventatively.  Ran errands.  Spent a lot of time in the car, as well as getting in and out of the car.  Much walking and cleaning the house.  Feeling really rough this evening.

Sunday April 11:  Major backslide.  Woke up in wicked pain again, but it was different somehow.  Back to using the TENS religiously 30 on, 30 off.  Got the J&J COVID vaccine in spite of already having heard about the severe reactions.  Took a nap, then readied for dinner guests.  Enjoyed fabulous food with a fabulous family, then sat for quite some time chatting with my friend while the guys played board games.  At some point, I noticed pain radiating down the side of my leg.  Odd, but chalked it up to stiffness from sitting for so long.

Monday April 12:  Holy shit!!  What the f*** happened?!!  Major pain when rolling over in bed again.  Woke up in pain every bit as excruciating as it had been 3 weeks ago, but different.  Thought it was pain and stiffness from being sedentary and decided to walk the dog to see if it loosened up.  A quarter-mile into a 1-mile loop I was crying from the pain in my hip.  Terrible nerve pain radiated down the side of my thigh and made every step horribly painful.  Couldn’t take a full stride without agonizing pain.  Husband unnerved to see me in tears – doesn’t happen often.  Got to chiropractor’s office right after they opened.  God bless Dr Ryan.  Poor man was completely befuddled.  In short, not only was the left SI joint still subluxed, but so were the left hip joint and pubic symphysis – so NOTHING about the left side of my hip/pelvis was stable.  Cried out in pain and teared up more than once during the adjustment.  Absolutely NOT going to work today.

Tuesday April 13:  Newest development – knee buckling.  Are you f***ing kidding me?!!  Still have searing pain in the left hip, as well as intense nerve pain running down my IT band and lateral quad, and now my knee buckles if I move too quickly or downward, like down stairs or the slant in my driveway.  Saw a different Dr at the chiropractor’s office who was just as befuddled about what the hell is going on.  SI joint and hip still out, but pubic symphysis holding steady.  Def not getting back to work today.  Kept my hair appt, though, since all I had to do was sit for about an hour.  Easier said than done.  Informed my stylist that I had hurt myself and needed to move very slowly.  About screamed when she leaned the seat back to wash my hair, had to bring my knee up toward my chest and hold it there as long as I was reclined.  Leaving the salon, my knee buckled as I stepped off of the curb, I couldn’t recover, had visions of face planting on the asphalt, reached out to steady myself against a total stranger’s car.  Got home to find out that not only does my knee buckle when going DOWN the stairs, I now have loss of strength to lift myself UP the stairs with my left leg.  Can we cut the f***er off now?  PLEASE?

Wednesday April 14:  Radiating pain seems to have eased some, now the quad feels stiff and like it’s riddled with trigger points.  Still dealing with the knee buckling and pain/loss of strength when going up the stairs.  Discovered that I have loss of feeling in the front of my left leg from just above my knee to just above my ankle.  I am officially done.  Saw the third Dr in the chiropractor’s office, who has been treating me for 13 years and been informed of the latest enigma my body is pulling off, he is also stumped.  Seriously, can we just cut the f***er off now?!

Thursday April 15:  Should have been on my way to Gatlinburg with my mom today.  That’s not happening now.  Not feeling nerve pain down my leg today, but still dealing with numbness and knee buckling.  Regained some strength for lifting myself up the stairs on my left leg.  Still not perfect, still painful, but I will take the little victories wherever I can find them.  Still can’t take a full stride without intense, sharp pain in the hip.  Still get very stiff if inactive for too long.  Lateral quad still achy.  Decided to try foam rolling and found many very painful spots – may have invented a few new 4-letter words.  Husband keeps asking if he can get me anything, I tell him “a new hip and leg.”  Decided to see how long I could go without pain meds today and didn’t do half bad.  Really feeling it this evening, though, so took the PM stuff.  Here’s hoping.

Friday April 16:  Do I think it?  Do I dare allow the words to leave my person?  The last time I did all hell broke loose.  Am I actually recovering?  Feeling pretty good today, all things considered.  Still get a jolt when rolling over in bed, still numb in the front of the lower left leg, still stiff thru the lateral quad, knee is still buckling.  BUT, no intense nerve pain, stride length is getting longer before the catch in the hip, a little stronger today lifting myself up the stairs on the left leg.  Can do a forward fold and roll myself back up to standing with no pain in my back.  Still get super stiff when inactive and take a minute to get moving without pain, still need to be very mindful about how I move, but got thru the entire day without TENS or meds.  Do I hope?  Better shut up before the shit hits the fan again.

All I Did Was Get Out Of Bed: an episode in the life of a middle aged person with joint hypermobility syndrome - weeks 1 & 2

 Saturday March 20:  Woke up with an ache across my low back/hips, thought it may have been delayed onset muscle soreness from my strength workout 2 days before, or the ache I experience with my menstrual cycle, though the timing as slightly off.  As the day progressed, the pain increased significantly and radiated up my back along my spine – definitely NOT DOMS or menstrual pain.  Very confused about cause since I have no memory of hurting myself.

Sunday March 21:  Woke up with intense pain in low back, broke out my TENS unit – 30min on, 30min off from the time I got dressed until I got ready for bed.  Could not bend from my hips without pain; left more so than right.  Eventually figured out that I could do something like a one-legged squat on my right leg to reach items on the floor.  Reaching across my body in either direction hurts.  My posture hasn’t been this perfect since high school choir seeing as slouching is excruciating.  Messaged bosses to ask permission to come in late tomorrow so I could see the chiropractor – granted.  Tried to get some sleep but rolling over in bed sends a lightning bolt thru my back.

Monday March 22:  Chiropractor confirmed what I suspected – both SI joints subluxed, as well as L5 at the S1 junction.  TENS unit is still my best friend, as is ibuprofen.  Tried to work my scheduled double, bailed after 11 hours when the workload died down.  Had great fun trying to explain to people who are unfamiliar with my connective tissue disorder that I literally woke up this way and have no idea what caused the injury.

Tuesday March 23:  Definitely over did it yesterday, called off today.  Back was screaming.  No noticeable change in symptoms.  Continued to use TENS and NSAIDs religiously.  I can’t walk my dog, but my new hiking shoes came today (pout).

Wednesday March 24:  Chiropractor is still stumped, as am I.  Did a seated workout, even that with modifications.  Made it to work today with the TENS and meds.

Thursday March 25:  Managed a very low impact, low key workout and some yoga.  See comment about work from previous day.

Friday March 26:  Chiropractic visit, we are all still baffled.  In addition to the stifling pain in my back, this evening I discovered something creeping out of the opening of my vagina.  Cuz I don’t have enough going on to panic about, now I have something that is supposed to be internal trying to escape via an already existing orifice.  Need to let this new discovery settle in my brain before progressing.

Saturday March 27:  Decided to google vaginal mass and followed the rabbit hole to something that looked probable – pelvic organ prolapse, specifically uterine.  This would explain not only the weirdness happening in my lady parts, but possibly the back pain if the ligaments that anchor the uterus to the abdominal wall were pulling the vertebrae out of alignment.  Took a pic of what was trying to fall out, looked like a seahorse.  Looked up pic of uterine prolapse and wasn’t convinced that’s what it was but decided to schedule with my GYN to rule it out anyway.

Sunday March 28:  Maintained status quo throughout the day.  Rolled over in bed that night and suffered such a sharp, stabbing pain that I cried.  Managed to get out of bed and limp down the hall for more ibuprofen.  Husband saw me limping and crying and asked if I was OK.  I said no.  He asked if I needed to go to the ED.  I said hell no, I just needed meds and to go back to bed.

Monday March 29:  Scheduled to work another double, talked to bosses about the weekend’s findings.  Asked if I had permission to leave if I could get an appointment same day, was told that if I couldn’t I was to go to the ED.  I’d rather give myself the hysterectomy, but was threatened with being hog-tied, tossed into a wheel chair, and driven to the ED by one of the bosses.  Couldn’t get an appt Dr until Wednesday, told the boss I would walk to the ED.  Registered at noon, walked out of waiting room at 4pm without ever having been roomed.  Found out later that they had tried calling me once at around 440pm and again around 930pm FOR VITALS! – not even to room me.  I work for this hospital, sometimes in that ED, told them when I registered that my boss sent me there because of the pain I was experiencing, they noted on the trackboard that I was an employee, and they still would not have roomed me after 9 HOURS.  Explained to my husband that this is why I won’t go to the ED unless I am bleeding profusely or have a bone visibly sticking out of my body.  He quipped that if I had let him take me the night before maybe I would have been roomed by 4 that afternoon.  Informed bosses that I left the ED without being seen, and that I would not return until I had been checked out by my GYN on Wednesday.

Tuesday March 30:  SSDD (same shit, different day)

Wednesday March 31:  Finally saw the GYN, who concluded that I have an insignificant vaginal wall prolapse that is very common in women my age who have had multiple vaginal deliveries, and it requires no intervention.  It definitely is not contributing to the severe back pain.  Chalk it up to coincidental timing.  Pain level remains high even with several chiropractic visits and constant use of TENS and NSAIDs.  Must continue to be very cautious of how I move, and rolling over in bed still sends a jolt thru my back.  Still no solid answer as to how this whole shenanigans came about, but all are certain that the main underlying contributor is my damned connective tissue disorder.

 Thursday April 1:  SSDD.  Mother is not happy with me for deciding to go back to work tomorrow, thinks I need more time off to rest.  Reminded her that the last time I subluxed my SI joints it took 10 months for them to stabilize.  I don’t have that much PTO.

Friday April 2:  Back to work after almost a week off.  I have good days and bad days, and today was decent.  Pain was manageable with TENS and meds.  Got thru my shift no worse for wear.

TO BE CONTINUED...