Parents Raising Parents

 I was 6 weeks shy of my 19th birthday when I gave birth to my oldest son. I was a child raising a child, and I often say that he and I grew up together. Those early years were a challenge, to say the least. Aside from us being very young parents trying to raise a child at the poverty level, I suffered from suicidal depression and almost hurt my baby twice. 

There are some advantages to having children earlier in life, though. Our youngest graduated high school when I was 43, an age at which some of our friends were wrangling the demands and schedules of multiple school aged children. I now have freedom of time and finances that wasn't possible while raising children, as well as the relative good health to enjoy it. Being a young parent increases the likelihood of being a young grandparent, with energy and stamina to truly enjoy those young years - though I am perfectly content to wait for those precious grandbabies while spoiling my precious grandfurries. And I am honestly incredibly thankful that neither of our boys followed in our footsteps of unintended early parenthood.

So, here am I, now, at a crossroads.

Have y'all seen the meme asking the question, "Is anyone else having a hard time raising their mother? That lady don't listen."? Well, my mother listens - but she doesn't always remember.

For a little over a year now, Mom has been demonstrating signs of age related forgetfulness. She IS 70, after all. But even age appropriate signs of mental decline are red flags when there is a rampant family history of dementia, so I made mental notes when Mom asked me a question more than once or had forgotten we had already discussed a matter. A few weeks ago, however, that table was turned when she brought up a situation she believed she had already told me about but that I am 100% CERTAIN she did not.

At some point in the late summer or early fall last year, Mom had 2 separate episodes of misinterpreting what she was hearing. The first occurred when her youngest grandson was visiting. He was sitting on a step facing away from but talking to his grandmother when she suddenly couldn't understand what he was saying. She heard his voice, but the words no longer sounded like English. She said it sounded like he was speaking Russian. Well, I am here to tell you with absolute certainty that my 11yo nephew does NOT speak Russian. The second incident occurred not long afterward while she was conversing with a friend, and, once again, it sounded they were speaking Russian.

Why was I JUST hearing about this 4-5mos after the fact?! Because she honestly thought she had already told me.

Thankfully, being a retired nurse, my mother had the wits to recognize that these episodes were a matter of concern and scheduled a consult with a neurologist. The day she'd had her consult she called to "update" me on the situation that I had no idea was happening. It took a minute for me to wrap my brain around not only what was going on episodically, but also that she TRULY BELIEVED she had already told me. Oh, and she didn't want to me tell my siblings until more was known about what had caused the episodes. Considering the fact that I am not in the habit of regularly communicating with either of my sibs, that wasn't going to be an issue. However....

My sister lives 6 houses away from our mother. Mom's house is on the corner, my sis's house is in the cul-de-sac. There's not even a street that needs to be crossed for one to get to the other. I, on the other hand, live 2hrs away and require highway travel to be of any physical use. The initial concern was that Mom could be having focal seizures, but let's not tell the kid she lives closest to and would be the quickest to respond in the case of a true emergency.

Fast forward a few weeks. Mom has had an EEG and MRI of her brain. I have no point of reference for an EEG beyond understanding the usefulness of the test. The report of the results may as well be written in Russian since I wouldn't be able to understand it anyway. But the MRI, that is more my territory. Per the radiology report, Mom has damage to the speech center of her brain consistent with micro-strokes or focal seizures. At the time of this writing, the jury is still trying to sus out which is the more likely. Also, per the rad report, Mom's brain shows changes consistent with the early stages of Alzheimer's disease. Oh, and don't mention it to my siblings, yet, because Mom hasn't figured out how she's going to tell them.

The crazy train has officially left the station with my mother on board.

On one hand, my mom IS 70. She is almost a decade older than her mother was when she began displaying signs of dementia. (Her sister/my aunt is not a good comparison since her crazy has been chemically enhanced by way of rec drug use for longer than I've been alive.) She always strove to live as clean a life as she was able, never smoked or used recreational drugs, and enjoys alcohol only occasionally. She retired from nursing with a Master's degree in anesthesia and has remained physically and mentally active in her retirement. All of these life habits play in her favor and, along side modern medications, can significantly slow the progress of the disease.

On the other hand, Alzheimer's is a cruel and merciless mental decay that wreaks more havoc on the hearts of their loved ones than on the patient themself. Over the next however many years, I will watch the person my mother is now deteriorate and die, most likely before the vessel in which that person resides. And if there were a third hand to throw into the fray, heredity dictates that I, too, will likely rot mentally while causing heartache for those who love me.

Ironic sidenote: Last week I was invited to participate in a research study that intends to decode the DNA genome to determine risk factors for specific health maladies, mostly cancer markers and familial links to high cholesterol and heart disease. The consent for participation does state that ancestry will be determined, and that the results could reveal information that is unwanted or hard to hear. I wonder if Alzheimer's and my stupid connective tissue disorder will show up.

When Mom's husband passed away years ago, she decided to move closer to one of us kids. The 3 of us live in different areas of the state, and she did look at options near each of us, ultimately settling on being close to our sister. I don't know what criteria Mom used to make the decision, but I would guess some of it had to do with the fact that my sister has the youngest of the grandchildren and the most able-bodied spouse, all of which could help Mom with general upkeep of house and home. But my sister has proven that she is either blissfully ignorant to or refuses to acknowledge the level of care our mother will be needing over time. 

Less than a year ago, when Mom had shoulder surgery my sister was creeped out at simply helping her get dressed with her arm in the sling. In the weeks before the surgery, I contacted my sister to ask what care, if any, she had planned on helping with. She had thought of making extra portions for dinners to share with Mom and helping her with personal hygiene, but never considered care of the animals - feeding, walking, one is on insulin - or assisting with the everyday activities of living life. So I took a week+ of FMLA to take care of Mom post op. Either my sister needs to get her head wrapped around and be willing to do what is needed for Mom as this disease progresses, or else either my mother or myself will need to be relocated.

Kids raising kids. Care for the caregiver. These are concepts society is both familiar and concerned with. But parenting parents isn't as visible. Yes, it falls under the overall umbrella of "care for the caregiver", but "parenting parents" feels so much more specific. I am fortunate in the timing of events in my life. I am no longer responsible for children in my home, nor do I yet have grandchildren, so I am able to focus on mothering my mother if that is what is needed in this moment.

Side Quests

The journey to wholeness continues. But seldom, if ever, is a journey a straight and easy path. What fun would that journey be anyway? And how would one become stronger if never under stress? The saga of any conqueror is full of side quests. At least, that's what Monty Python leads one to believe in The Quest for the Holy Grail.

My journey began at a doctor's appointment with the intent to find wellness. We discussed my cold sensitivity, my surmising about bipolar disorder, and the fact that my age dictates that I am past due for several unpleasant health screenings. A referral to a psychiatrist to more adequately assess bipolar disorder and a battery of lab work to investigate the cold sensitivity were granted without issue.

The result of the psychiatric assessment was treatment for hypomanic bipolar disorder. The gradual increase in the medication messed with me with every step up. The introductory dose caused a mid-day energy crash for several days. The moderate dose gave me wicked brain for almost 2 weeks. I was still dealing with the brain fog when it was time to step up to the current maintenance dose. The maintenance dose has plagued me with sleep interruptions and nightmares - because I need more help experiencing terrifying dreams during the far too little sleep I get on a good day. To make a crummy situation crappy, I don't feel any improvement in my mood with the medication.

As for the test results, all were within normal ranges. As were a second round, testing for less obvious reasons for cold sensitivity. Most likely, the cold sensitivity has more to due with my connective tissue disorder as there is a correlation between the disorder and nerve damage within the skin. So unstable joints and a heart murmur aren't enough for this fabulous condition. Now I get to be cold for the rest of my life. 

Now, Side Quest #1.

My mom has been experiencing pitting edema (swelling that leaves an imprint if pushed on with a finger) in one leg and foot for several months. She can't remember the last time she could actually see the bony part of her ankle and there's an area at the base of her toes that looks almost bruised, but she's had no known injury. After a lack of results from working with a podiatrist, she was referred to a neurosurgeon with the idea that her symptoms were stemming from damage within her spine. Her recent MRI did determine degenerative disc disease throughout the lumbar region of her spine. She has yet to attend her follow up appointment with the neuro, but the prognosis looks initially like surgery.

As was evident when Mom had shoulder surgery, my sister, who lives on the same street as our mother, has NO CLUE was to expect nor any idea how to care for Mom post-op.  I, who lives 2hrs away, was the one who took a week of FMLA to take care of Mom after her surgery. We are still waiting for the next step of this side quest to be revealed.

Side Quest #2

Our son in Texas has had a piece of shit week. In a 7 day stretch, the poor kid has called us multiple times in a panic and on the brink of a meltdown. Twice he was actually in the midst of a meltdown. To a point where I couldn't understand the words he was trying to say. We had to talk him back from the ledge each time. The short story is his car broke down several times in a single week and one of the repair guys did him dirty by installing a faulty radiator. $1400 and an awful lot of calming and reassuring later, he was then fired from his job for missing work due to his car. Truth be told, I know this kid and his personality - because it is exactly like mine - so I have no doubt that played a role. But the nitty gritty is that because he was melting down as a result of just not being able to deal with the stress of everything falling apart all at once, he no-call-no-showed and was let go. He did have an interview already scheduled for the next day, so there is hope. If you're a praying person, please add him to your list as he desperately needs something to go well for a change. We are still waiting for the next step of this side quest to be revealed.

Side Quest #3

I have had tingling in one arm intermittently, yet daily, for 5 months (as of the time of this writing.) I have experienced thoracic outlet syndrome twice before, and chiropractic care combined with deep tissue massage were able to resolve the issue within a few months. This tingling doesn't feel the same as TOS, and the chiropractic care and deep tissue work aren't making a dent. So I finally asked for a referral to my neurosurgeon, expecting imaging, an exam, and a recommendation for steroid shots.

Yeeeeeaaaaah. I'm never that lucky.

As anticipated, there was imaging, and more of a consult than an exam. The imaging was shocking, horrifying, and downright depressing. The abbreviated version is that I have degenerative disc disease throughout my entire spine, most significantly in my neck at 3 levels, as well as signs of arthritis in the same area, and the severe loss of disc height has lead to bony malformation (essentially bone spurs) of the vertebrae. The only real treatment? Cervical spinal fusion.

Yes, major surgery is the only option to truly correct the damage done. Unfortunately, because insurance companies dictate the flow of care instead of doctors and patients working together to determine the most reasonable path to wellness, I get to endure 6 weeks of physical therapy that in no way is able to improve nerve impingement due to spinal degeneration, as well as an EMG and NCT (I'll let you look those up.) Then, should PT prove unhelpful and the testing prove nerve issues, the insurance co MIGHT cover an MRI in order to determine that the tingling is, in fact, a result of destruction of spinal integrity and that conservative therapies were a 6 week waste of time.

And the best part? This is most likely due to my connective tissue disorder.

My fucking, life altering, enjoyment killing, freezing cold, never ending injury inducing, heart damaging, spine destructing connective disorder. How did I get so lucky?

Another fun aspect to this latest blow is that I know how this surgery is performed. I've done intra-op imaging for these cases - ironically, with the neurosurgeon I see. The only comfort is knowing how he functions in his OR - he is generally unrattled, even when the case goes less than smoothly, and he always does right by his patients. Those are reasons why I chose him. But in a gruesome nutshell, they slit your throat, move the trachea and esophagus over to one side, put spacers between the vertebrae where the discs used to be, then put a metal plate linking the damaged vertebrae together on the front of the bones. What's not to gleefully anticipate? 

However, we are still waiting for the next steps of this side quest to be revealed.

The Journey Continues

 Hypomanic Bipolar Disorder.  I've known for a long time that I am a special brand of crazy, and I was 100% ready to hear that what I have been experiencing was natural for a middle aged woman on the cusp of The Change. But a half-ass mental disorder?  Ordinarily, I'm a go-big-or-go-home type of person. So a less than full blown mental disorder is almost insulting.  ALMOST. 

In the medical world, the prefix hypo refers to underactivity.  Think hypothyroidism, when a person's thyroid is not producing enough hormone, which results in a specific set of symptoms.  Hypomania is similar concept. The mania I experience is significant enough to warrant an attempt at treatment, yet it falls short of what the world thinks of when someone says they are bipolar. In a nutshell, my mania last for only a few days at a time, where classic mania can last from a few weeks to a couple of years in extreme cases.

It interests me that the distinguishing verbiage between type 1 and type 2 bipolar disorder only addresses the mania aspect of the condition.  There doesn't seem to be a defining factor that separates the depressive stage between the types.  Maybe it's assumed that the depression is less intense given that the mania is less intense.  But we don't have different wording when it comes to diabetes.  There is only type 1 and type 2, not hypopancreatic or hypersugar diabetic disorder. And there are SEVEN different types of Elher Danlos Syndrome, tho type 1 and type 2, as each are actually called, are full body conditions whereas the next five are specifically named for the area of the body that is effected.

I don't know how classic bipolar disorder is medicated, but I know what I am taking.  When I investigated how the medication functions physiologically, I learned that it blocks areas of the brain that seem to be overactive (maybe it will help the ADHD?) and is used to treat epilepsy. With this in mind, I'm very unclear as to what section of my brain is overactive.

The med I am on is the kind that needs to be graduated over time until the maintenance dose is reached. When I started the introduction dose I experience a midday crash where all I wanted was a nap.  Not exactly conducive to working in an area where invasive procedures are performs.  After starting the step up dose, I experienced wicked brain fog.  Again, a hinderance to my job.  I am now on the maintenance dose and thus far I have not experience a midday crash or brain fog.  But I have lost my appetite to some degree.  This side effect can continue as far as I concerned. I have a very hard time believing that the part of my brain that effects my energy lever is "overactive", but I DO believe that the area that craves food is.

By the time I follow up with the psychiatrist I will have been on the maintenance dose for 3 weeks. I wish I knew what to expect from this dose over the next week or so.  I only hope I don't get fired. 

A Different Kind of Second Fiddle

 Anyone who follows my FB page is familiar with my lamentations about always playing second fiddle.  Like being the overlooked middle child - playing second not only to the Golden Child first born son of an Italian father, but also to the baby of the family.  Or how I have enough vocal talent to make the choir but never enough for a lead.  I have exactly enough of just about everything to land somewhere beyond above average but short of extraordinary.  I've been borderline anemic and on the cusp of low calcium and potassium, as well as having JUST enough thyroid stimulating hormone to avoid a "Hypothyroid" diagnosis, but never low enough to warrant treatment of any kind. I have a knack for taking "unremarkable" to a level that gets me noticed only occasionally.

A few years ago, I finally gained a level of self-awareness to understand that some of my behaviors are out of line, but I seemed to lack either conscious control of my actions or any level of give a shit.  When my oldest was diagnosed with ADHD, OCD, and ODD (oppositional defiance disorder, it's an impulse control issue) 20 years ago, the counselor suggested that he came by all of those traits honestly and that I may want to consider pursuing diagnosis for myself.  As an adult in my mid 20s at the time, I didn't see a reason to seek a diagnosis. I saw the traits in myself and accepted that. So I chalked up my attitude and lack of impulse control to a mash up of those conditions.

As my son grew older and matured some, he seemed to outgrow the need for meds, and by high school he stopped taking them all together.  By that point, I had actually questioned if he had been misdiagnosed and was truly on the Autism spectrum.  I didn't understand Autism enough to recognize the differences between high functioning and his combo of labels when we were seeking help for him. But as I came to know other children with Autism and to understand the way their minds worked, I wondered if we had taken the correct path for our son.  By then, though, he had developed successful coping mechanisms and was doing well in life so I didn't pursue it.

That decision came back to bite me years later when my son came to me about believing that he may have high functioning Autism. He has not yet pursued an adult diagnosis, and I live with the regret that I didn't follow my instinct and have him assessed when I first suspected the possibility.

Wondering about my son's diagnosis then lead to me considering my own quirks. Do I truly have ADHD? I'm still on board with that.  Am I truly OCD?  Most definitely.  Do I truly have ODD? I think it's safe to say that I do. But are these stand alone diagnosis, or are they parts of a greater whole? 

As I have aged, I have noticed that some of the traits of these conditions have become more intense. I become much more agitated now when things aren't just so - the way I want my kitchen or bathroom to be cleaned, for example.  I've never let my husband fold my laundry because his way leaves things wrinkled, but I have become much more picky about how even I fold my clothes. In recent years I cannot stand the feel of my husband's fan blowing over any part of my body while I try to sleep, though it never used to bother me. Traffic has always been a rage inducer, but the vehicle I've had for just over a year has seen triple digits more than all of my other vehicles combined, and I do not care. I have always been a talker (you're shocked, right?), but now I seem to suffer from diarrhea of the mouth.  I know I'm doing it.  I know I'm probably oversharing and putting people off. But I cannot control it. 

I would love to blame all these changes on being a middle-aged female who is likely dealing with the hormonal flux of perimenopause, but I am not convinced. I have no doubt that hormones are a factor in the equation, but not the answer. With a history of intense depression and periods of equally intense energy, I began to wonder if I am bipolar.

Then one slow night at work, I decided to look into the possibility.  I googled "signs of bipolar disorder" and scrolled through the results. Now, before anyone accuses me of confirmation bias in order to self diagnose, I was simply curious to know if I was looking in a worthwhile direction. It was then that I discovered that bipolar disorder now has 2 types.

Bipolar disorder type 1 is the classic manic/depressive characterized by wide mood swings and lengthy periods of time spent in both the manic and depressive phases.  While manic, some people engage in dangerous behaviors that could result in physical and/or psychological damage.  Others may display less dangerous though no less detrimental behaviors. I know of a person who spent 10 months in a manic phase that nearly resulted in bankruptcy in both their personal and professional lives.  And the depressive crash is every bit as fierce.  Thoughts of suicide to atone for actions taken during the manic phase are not out of the ordinary.

Bipolar disorder type 2 is differentiated by way of lesser intensity.  People with type 2 usually experience less severe mood swings, display fewer dangerous tendencies, crash into a less extreme depression, and the time spent in each phase is not as prolonged.

On that slow night at work, I took a screenshot of the general characteristics of traditional bipolar disorder, sent it to my husband, and asked him, "Without telling me which ones, how many of these traits do you see in me?" The number he returned was just under half of the list. Next, I sent him a screenshot of the list for type 2, which is also known as hypomanic, and asked the same question.  His answer was all but 2 traits on the list. His follow up message asked what this was all about. I told him that I thought I might be bipolar and he had just confirmed it.

That was over 5 years ago. And the thought has been lingering in the back of my mind since. It was a situation where I felt like I demonstrated enough traits to give the idea consideration, but not enough to convince me.  Yet, as I have aged and come to experience some characteristics more intensely, the idea was brought to a frontal space. I finally decided to ask my doc about the possibility of pursuing a diagnosis.

When I spoke to my doc, I was fully prepared to hear that I was barking up the wrong tree.  By the same token, I was also prepared to ask for suggestions as to which tree looked most promising.  All I knew for certain was that I didn't like how I felt, I felt like I had no control over my impulses, and I was making people uncomfortable at times. And I didn't want to continue to feel this way. After analyzing me by way of a litany of questions, they felt that I demonstrated enough red flags to have me fully assessed by a psychiatrist.  That assessment took place a week ago - and I am now being treated for hypomanic (type 2) bipolar disorder.

A friend of mine has a child who lives with hypomanic bipolar disorder, and I discussed my thoughts about the possibility with them.  I told them that my phases manifest in physical energy.  My manic phase presents as a tidal wave of uncontrollable, highly intense energy - which plays in my favor if I need to clean my house or do yardwork - often resulting vomiting conversation that does not need to happen and an absolute lack of control in the matter. Consciously, I understand what is happening, but my reptilian brain kicks in and the situation is 100% outside of conscious control. And since every action has an equal but opposite reaction, the energy crash can be debilitating, with me spending many hours in a recliner trying desperately to will myself to take care of at least one of the myriad tasks staring me in the face. No dangerous activity (unless I sass the wrong person at work and end up on disciplinary action) or extremely dark mindset, only heightened passionate energy and a wicked crash. This friend said that is how their child experience hypomania.

To bring this rambling story full circle, I cannot even have the full-blown original version of bipolar disorder - I have the second type. Once again, I am playing second fiddle - displaying just enough promise to continue to live in the less than. The only difference here is that I am actually being treated. And if the treatment is ineffective, I am prepared to accept that I have, in fact, been barking up the wrong tree. If that is the case, I'll grab my hand-me-down fiddle and move on to the next lackluster tree in the park of mediocrity.

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...