Pain

I have been absent…for awhile. You see, I have been researching and attempting all viable methods of pain relief to improve my quality of existence; I think I’ve tried everything except Holy water from Lourdes (yes, it’s a real thing).  Recently, I had a spinal cord stimulator (SCS) implanted in my back, connected at the T level, to relieve constant back pain and improve mobility on my right leg. This pain and injury was not due to my autoimmune disease; rather, it was from the reckless actions of an unlicensed, questionably-insured driver.  It was the breaking point for me; something I didn’t ask for, deserve, or need in my daily life as a chronically ill girl wanting nothing more than a quiet existence.  I will pay for the 15 seconds of thoughtless activity of another person for the rest of my life.  This post is not about that, however; it is about the flare that reared its ugly head when my body realized something foreign had been placed within and the frantic aftermath of the monkeys trying to expel the demon that now resides in my spine.  This post is also about the obtuse topic few care about but all are impacted by – the opiod crisis we are now LIVING.  

I have wires along my spine and a battery pack in my ass; no other way to explain that last one.  Aside from my round rump now being scarred and deformed, I have extra duties weekly; charging my butt battery so the wires can do their job.  The SCS does its job somewhat; my leg does operate more efficiently and my neck pain has diminished when the SCS operates above 22.  I should note that I have neuropathy in my feet, legs, hands and arms AND this is exactly what the SCS feels like, only amped up. Imagine you electrocute yourself while cleaning your outlets with a bleach wipe (I’ve done this).  The zap of electricity shoots through you and then it’s gone, right?  Well, the SCS keeps a continuous feed of electricity running through different parts of your body; this is intended to diminish pain.  I cannot say the pain is diminished to a functional level because if I walk through the grocery store for an hour, I am down the rest of the day, unable to maintain balance and literally fall out wherever I am.  That one hour of activity results in 10 hours of exhaustive sleep, even with the SCS.  I knew the device would not work on my autoimmune diseases and I was okay with that; I really wanted to check off the back injury and move on with my life-long journey of treating and managing my other illnesses – they were enough to fill my plate, really.

As I was recovering from surgery and the resultant flare that kept me down and in bed for three weeks straight, literally unable to wake up or walk more than 30 feet, I read ALOT.  I tried to ignore the bad stuff and maintain a strict menu of happy, positive, educational reading material.  However, I could not avoid the opiod crisis “news”, if we must call it that.  I finally have had my fill and feel compelled to express my experience with opioids and alternative pain management techniques.

I am educated; I served as the director of a multi-million dollar agency that assisted with the development and improvement of communities at the local, state, and national level; I served on a national board to improve community development implementation and provide partnership to federal agencies and congressional leaders.  I was seeking my PhD.  In short, I had my shit together.  I became ill and continued to work until my body and my brain became so debilitated that I could no longer serve effectively in my position, or any position, at which point, I medically retired. I mourned the loss of the old me. I went to therapy. I sought every type of treatment available. I was an avid yoga practitioner and even sought out a teacher who could modify my routine/positions.  I practiced Pilates and core training.  I thought if I kept moving I would be okay; my body and the monkeys residing within told me otherwise.

I sought out a pain management specialist; a doctor who could help me manage my pain apart from my other specialists, who were busy managing my diseases.  This was a proactive move on my part and I think one of the best I could have made.  I have attempted physical therapy. I complete the Chronic Pain Association’s pain management program and still refer to the 3-inch thick binder on a regular basis. I completed an innovative pain management program that combined the CPA program and meditation therapy; this was an 8 week, 4 hour/day program that taught the fundamentals of pain management as well as meditation to manage pain. This program was, by far, the most effective, emotionally and psychologically, I’ve ever accomplished and I still recommend it to fellow Spoonies.

I tried NSAIDs, ibuprofen, mind over matter, stubborn pride, and everything in between.  I have also tried most of the opioids available.  I took myself off them when I found they did not work. In fact, in the seven years I’ve been ill and five that I’ve been treated with opioids through a PROFESSIONAL PAIN SPECIALIST, I’ve taken myself off EVERY opiod except oxycodone; I even took myself off the fentanyl patch!  I ask you, would an addict/abuser do this?  

I know my body and I know the pain that wreaks havoc on a daily basis. It took me five years to learn to listen to my body and slow down.  I am allergic to all DMARDs, which leaves my RA untreated; the only thing I can take is Plaquenil.  My pain levels are extremely high and I push the pain threshold daily because it appears the federal regulatory agencies addressing the opiod issue have decidedly lumped every user into one category, disregarding the professional opinions of pain specialists and valid patients.  This is the most heinous injustice I’ve seen in the medical industry, save the epipen issue.

I agree GPs should not be prescribing opioids for chronic conditions; that is what pain specialists are for.  However, when sickle cell anemia trumps some terminal cancers, we need to re-evaluate the criteria by which we are making decisions.

Before I was approved for the SCS, I had to undergo a psychological evaluation; seems fair, right?  When I was accepted by my pain management specialist, I had to sign a Treatment Agreement; seems rational, correct?  Why can the federal decision-makers NOT see that this process works?  Members of Congress, governors, political leaders are not medical professionals and I would not want them performing my SCS surgery, even in the best of circumstances.  Parameters are in place that prevent CNAs and MAs from prescribing medication and performing surgeries.  The medical profession has the expertise and structure to provide exceptional care, when they are not bullied into political decisions that affect the lives of patients, who are real people. Chronically ill patients are not addicts, as a rule, and, if they are under a treatment agreement with a qualified Pain Doctor, they are less likely to spiral into addiction and sales of narcotics as a career.  Conversely, addicts are going to find drugs anyway, anywhere, even if they have to make them, lest we forget the common household components of meth. Common sense has lost its placeholder in this issue and someone needs to issue a timeout for one to be inserted.

I live with a chronic illness, which results in chronic pain; I am not a chronic pain patient. I live on a limited income because of my illnesses and I’ve adapted my lifestyle. Recently, my dishwasher broke and, of course I cannot afford to replace it.  I am now saving for a new mattress; one that will be comfortable for long periods of time…I will need such a mattress when the pain management tools I do NEED and are currently helping are stripped because of a bureaucratic system that refuses to take the time to effectively and fairly adjust a system that is not yet broken but will be soon.  

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All Noise and No Voice

Today marks the end of one of the most beautiful months of the year, regardless of where you are; September has just three days left and the true crisp of fall sets in.  Fall marks so many memories for me – I loved riding my horses in the fall, many years ago in Maine.  I love and miss the changing colors of the leaves in New England; I am partial to Maine, of course. There is also nothing quite like sitting on the shore of the ocean during a fall day to simply contemplate…the sand is cool and soothing, like Mother Nature created those tiny little rocks just to massage my feet while I listen to the winds serenade me in rhythm with the crashing waves.  The seagulls are happy I’m here; they gamble that I may have some Wicked Good ketchup potato chips, or even popcorn from Dickenson’s Candy. They come for visitors but stay for those whose souls cry out from a place so deep that only they can hear; they long for the company during the fall months, when the sea tumbles and grows dark early, seaweed warming on the freshly showered shore, hoping to be escorted back to the ocean once more before it becomes dinner.  The shells tell their own story, as do the sand dollars tourists have missed; but the ocean, she is one I come for and she is one who draws me almost daily until the first snow…the ocean soothes my soul like alcohol or the bittersweet line of heroin might for someone else. I close my eyes and listen to Sister Wind gently sing and envelop myself into the roar of the waves…Fall triggers other memories as well.

Fall begins as a gentle unsettling of my body, tugging in the morning and evening, but teasing in the early afternoon of love. The ebb and flow of the winds, barometric pressure, and temperature battle for ownership over my joints, muscles, skin, and organs.  It is a dance we know well, the fall and myself, for we have engaged in this tryst for seven years; every year, I’m afraid the wit of my body becomes a little more out of step with my soul and Mother Nature wins a little more quickly.  Each morning when I open my eyes, I realize I have been awake for much longer than the closed lids would suggest; my body has an alarm clock that does not keep with the metronome; rather, it plays a game of cat and mouse – which part of my body will quietly whimper from defeat, which joint will throb like an 808, and which muscle will atrophy in an instant, sounding the wake up call?  

Perhaps, as a Spoonie, I know my body a little better than many “other” people. I can predict the exact moment a chronic migraine will unabashedly crash open my brain through the slightest shift in my sense of smell or a slight increase in the constant ringing in my ears – the hum becomes a shriek inside my brain long before the migraine kicks it in with both feet. I know which joint on which toe is throbbing the loudest simply by remaining still in the middle of the night, when painsomnia awakes me like a night terror.  I also feel the heat, methodically, as if I were a lover seducing her partner, each curve of every limb, every single muscle rippling, and each organ under the soft skin that holds this broken body together; the lover stays…she always stays.

Several Spoonies express eloquently what it feels like to have RA, Lupus, Sjoegrens, Chronic Migraine, or any of the innumerable Invisible Autoimmune Illnesses, chronic illnesses. I am in wonderful company and I need that company to cushion my fall when I wake up a ball of tangled electrical wires from nueropathy or broken joints from my enemy vessel. I have learned to manage my life, but have not been as lucky with the hourly pain, and, without the ability to manage the pain that ravages my body, my life will not be as long, nor as LIVE as it once promised.  

Chronic pain from ANY disease cannot be contained in a book, federal regulation, or law.  One description does not translate to all patients.  If one disease, such as Lupus, can affect every victim uniquely, how can the FDA determine that the pain salve that does improve quality of life for one patient is too dangerous and addictive?

I have been on several opioids since my diseases increased and I was forced to medically retire; I removed MYSELF from all but the only one that works (not my doctor). I used to read and interpret federal regulations for a living so, when the “Guiidelines” came out last year, I was excited to read and dissect them. I was not surprised with any of the regulations; rather, I was mortified at the emergency need for some doctors to radically alter their approach to care. I have been fortunate and have not experienced this challenge (yet), but I lay awake at night wondering what I will do when my one, tiny, round relief system is ripped out from my access; it scares me more than the understanding that I can die from my disease.  The walks on the beach in the fall, nay, even sitting on the shore, will no longer be something I anticipate; they will be in the farthest corners of my ever-diminishing memory, yet another area of my body that my monkeys have chosen to steal from me.

 

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I Am Not My Disease(s)

My son calls me his Gypsy Mom; this both brings a smile to my face and a giggle to my soul. I am happy to be a gypsy anything, regardless of any negative connotations this may conjure for some.  My mum used to call me her “free spirit”, “gypsy daughter”, so it seems fitting that I am now a “gypsy mom”; I am what I am. I’m happy to be seen as someone who’s heart is free and flexible enough to allow love and happiness in. I’ve been called a lot of things in my life but free spirit has been a constant; I’ve always been known to come and go, travel without set plans, and everyone knows I don’t like roots.  Change…change is good, I used to say, and I believed it; still do…I wish things would change a bit these days…I wish I could remove a few monikers from after my name, and not the letters of accomplishment, although those don’t seem to matter these days.

I worked very hard to attain my degrees and wanted to badly to finish my PhD; I thought I was going to change the world. My Twitter even said I still believed “One person can change the world” and I really believed it; I still do – it’s just not going to be me whom changes it. As I said, I worked so hard; I ran an agency full time, went to school full time, and raised my kiddos full time while my husband was away at war (most of the time) and home in bed, not aware of where he was (when he returned).  I was on such a full throttle, I wasn’t aware of the juggling required and emotions were stuffed so deep inside of me, my kiddos were the only ones who could reach them. I made it!  Finished my undergrad in three years and my Master’s in one.  I decided to take a short break before embarking on my PhD and, during that lull, my life, and body, well, you know the rest..

The last two months have been filled with balding hair, facial rashes, bruises that sneak up in the night, and 20-hour naps followed by four hours of constant fog and dizziness.  Basically, I barely remember July and August isn’t even a blip on my calendar, except for the few notes on my journal; I’m sure if you read this blog, you’ve noticed.  I see my Rheumy in a couple weeks and left a message to run an entire list of labs because none of this makes sense; except that I have multiple autoimmune diseases and nothing DOES make sense when your body hates you…so, in that case, EVERYTHING makes perfect sense!  While awake for the few hours I’ve been these last couple of months, I’ve been reading The Mighty (www.themighty.com) and fellow Spoonies on Twitter, just to make myself feel normal, whatever normal is.  Oddly enough, these activities DO work; I no longer feel like I’m losing my mind. I read the blogs of other Spoonies who have painsomnia (pain is so bad that regardless of how tired you are, you cannot sleep), those who are fatigued ALL day, those who have fire in their eyes, and even those who cannot get out of bed until 30 minutes after they’ve taken their mess of meds in the morning; I’ve even read of one other Spoonie who is allergic to the DMARDs, like me!  I encourage anyone who feels like he or she is alone on this journey to read The Mighty, Creaky Joints (www.creakyjoints.org) or find your network of Spoonies on Twitter or Facebook – it could be just what you need in the middle of the night, or afternoon.  

I realize that I am not the only person facing these challenges and, they are more than challenges on some days. It helps to know that I have a family outside my family; one who understands that I’m not whining or complaining or being a paranoid hypochondriac.  I am simply being an educated, active patient and, indeed, other educated, active patients exist – this was an amazing revelation for me!  It is important to know that I am NOT my diseas(es), nor am I a number; I am Jacxx, and I am simply trying to find my Zen with all these monkeys…I hope you find yours too…we can find it together. 💜🕉

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Releasing Anger

Last Tuesday, after two weeks in bed, I took my grandsons to Jump City and then lunch; I knew I would pay for it by landing in bed for another few days but these two boys are worth as many spoons as I have to toss.  We had, after all, planned this “special Nonny Day” all summer and rescheduled it more than a few times because of flares and “bad” days.  I hadn’t been able to spend even ONE day with my grandsons this summer and they moved back to Denver so their mom, my daughter, could take care of me as I need.  This day, last Tuesday, our day, was truly special…until the dreaded…for the first time ever, since I have been diagnosed, I received the “infamous” nasty note on my windshield about my invisible illness.  I am not writing TO that person, nor am I writing ABOUT that person here; nay, I’m not even writing about the incident. Rather, I’m fleshing out my thoughts on letting that, and everything negative, as daily possible, go. I wanted to write to the guy who wrote the note; I did leave the note with the restaurant manager.  I also sat in my car and cried for a few minutes, after which I spent about 20 minutes explaining to my grandsons everyone does not understand that I am sick, when they see me struggle to walk every day, hold a pillow, manage a coffee cup, and even put my arms around them; they don’t get it and they are smart.

I had to sleep on this since I’ve seen so many responses to people who leave nasty notes on cares; I had to evaluate my actions methodically.  Why was I responding? Would the person even see my response?  Would I get the outcome I was seeking, and, if I didn’t, would I be satisfied with the one with which I was left?  I ultimately decided to LIG, let it go…those people ARE worth the effort of an explanation; however, they likely would not be in a place of receivership at the time of my response.  I don’t think I had enough spoons to respond in the eloquent manner I desired last week anyway; look, I’m just now hopping on my ZenTrain after many, many weeks as it is.  Letting go is indeed the answer to many things, even if I don’t realize it.  I’m trying to get there, and think I am better at it when I take life by the hour, not the day; If I can successfully conquer an hour without pissing anyone off or ripping what little hair I left out, I call it good and move on to the next hour…These are the things people, like the note-writing stranger, don’t see people like me, chronics, Spoonies, do on a daily, hourly basis – contemplate life (spoons).

I used to count myself one of those fortunate ones because I had not yet received one of those infamous nasty notes on my vehicle.  I had various responses all lined up in my head; I like to be prepared.  I thought I would be stoic and humble and provide the nasty note-writing stranger an elevator speech-sized education during our serendipitous meeting.  I even planned out my response regarding my choice of mobile tag versus disabled plate – I am not always able to drive myself and, when forced to be in someone else’s car, I can take my tag with me to ensure I am able to park in designated parking.  I never did get the chance, as you know from my above decision to LIG.  While I no longer count myself as one of those fortunate ones because I have not yet been tagged, I do consider myself fortunate; I have an outstanding support network and amazing educational resources so, in the event I meet someone who is unaware of what an invisible illness looks like, I will be more than prepared to share not only my story, but many others’ as well, in a dignified way that harms no one, not even the tagger.

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Through the Briar

Throughout the last three weeks, I’ve been crawling…through the mud, muck, and the briar. I’ve been struggling to pull myself back up to the thankfulness bubble within which I so desperately want to live. It has not been easy.  I attempted two spinal cord stimulator trials, the first of which was a complete disaster; if more pain can be imagined, it was even more excruciating than that!  The second one was better and I’ve decided, with my doctor and Boston Scientific Rep, to move forward with the permanent placement in my cervical spine.  I am hopeful I will have increased mobility in my arms and legs and decreased pain at my car accident injury site.  Time will tell…always time…something I seem to have a lot of and not nearly enough of at the same juncture.  

In addition to the SCS trials, I found myself in one of the worst RA flares of recent years, and that’s a mouthful!  My joints have been on fire and I’ve been, once again, at the point that I’ve seriously considered amputating my legs at the hips – yes, BOTH of them!  I haven’t been able to sleep because my monkeys have been jumping all night, wreaking havoc on every joint in my body.  Crying has reached a new level in my life.  I used to think I had a high tolerance to pain, but I’m rethinking that ink…I cannot walk and can barely make a crawl look marketable at this point; sitting is completely off the negotiation table.  This is not a pity party, although I can certainly plan one quickly enough, complete with party hats and streamers if given a good five minutes without pain.  My hands have been uncooperative, as have my fingers, toes, knees, and, believe it or not, my ankles.  I did discover KT Tape from a fellow Spoonie and, now, thanks to the vibrant colors, I can coordinate with my jammies on a daily basis.

If the SCS and RA flare were not enough for my monkeys to play with, my Sjoegrens has decided to jump on board.  If you have ever had an itch you couldn’t scratch, you might, maybe, perhaps, begin to imagine the insufferable pain I’ve been in.  I have literally scratched myself raw trying to contain the beast within my body, to no avail.  The wounds are certainly a conversation piece, appearing to be burns or injuries from a horrific accident; I’m thinking I need a cool story to go with the scars.  My ears are ringing louder than any weekly emergency alert system test or church bells have ever sounded to anyone, anywhere; worse, even, than having a shotgun blast directly next to your ear.  My eyes have been scoured with sandpaper and my lids have been filled with tiny shards of metal.  My nose is dryer than the Saraha on a hot summer day, and, my throat has been burned with fire.  I’m a HOT mess and not the adorable kind…No amount of prescription medication or allergy medication has proven effective in this battle; the war has been won by the tiny, evil monkeys living inside my body.  My body is on high war alert and the soldiers are in full offensive mode, striking before stricken; I am paralyzed by my own devices.

I am trying to remember that within this battle, this war, a purpose exists for me; I have a “thing”, a big “to do”…I am someone who has a journey and a gift to offer this world, I just haven’t found it yet and I must continue my search. I am tired. I am exhausted. I am blinded by this beast and I, at this moment in time, in the midst of the briar, cannot move forward. I cannot find the beauty in my battle…I cannot see the animal shapes in the beautiful white clouds…I can no longer feel the warm breeze in the summer air…I find no peace…I have lost my way and the monkeys are winning this week…

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Dream Worlds

I did it again last night; I did it last week. I’ve done three times in the last two weeks, in fact.  I haven’t been focused on it but it has been something I’ve wanted to improve upon for a very long time – dream walking. It seems when I don’t concentrate on it, I fall right into it, face first and don’t even realize it until I’m so deep into the world, I cannot get out without clues to the exit; and there are always clues, if you look. Sometimes, the voices are echoes of originals, like ghosts, or the people upon whom I most want to focus are silhouettes, only I don’t know that until I focus really closely.  

For example, one of the worlds I entered, a woman was wearing an amazing white body suit with Cabernet lace oversuit. –  and she was riding a motorcycle; a Virago to be exact.  I don’t like Viragos, but she was riding it down a very steep hill.  Anywho, when she sat on the Virago, going downhill, she was very large but when she stood on it, she was very, very tiny, like one of those tiny Barbies that can fit in your pocket but isn’t Polly Pocket. I wanted that Virago because my little brother was scared to walk down the very steep road and I needed to get him to he mall more quickly; I jumped the Cabernet lace bodysuit girl and rode up the side of the mountain, which was also steep and grabbed my brother and down we went…this was a dream world; an alternate world to this one. Everything was real, it was as if I was alive in this world and everyone in it was real. I knew it was a dream world when I noticed the Cabernet lace bodysuit girl go from rather large on the Virago to very proportionately tiny.  I actually said to myself “I am in a dream world so this is all okay.” I had to say this was “okay” because I was wearing an outfit I would not normally wear and it bothered me that I had gone out in public with this outfit on, knowing full well that I looked in the mirror before I left and then, when I saw Cabernet lace bodysuit girl, I thought she looked much more badass than I…you can surely see my relief when I realized this was a dream world; real of course, but a dream world where every outfit was perfectly suitable.  I was wearing a goldish tank with embellishments and black tuxedo pants, but no bra; I felt the outfit was really played down braless. Another key realization to understanding dream worlds for me is that I was in a room outside my house, next to my bedroom, made of plywood; it was the coolest stand-alone room, but it had bare walls save one very colorful picture (think Kandinsky). The picture was the size of an iPad, bold-colored with bright red, Spanish blue, neon yellow and black-framed. I kept telling myself, while putting my face on in the outside room mirror, that I needed to add more pictures. I told myself that it was not like me to have bare walls – I am a painter, after all, and my own house is full of color and texture, so why should this outside room be so plain? The boldly bare walls bothered me the entire time I walked in this dream.

I was embarking on an all-night vintage movie binge in the outside room when something occurred to cause me to sprint, braless but tasteful, to rescue something, or someone, at a mall. Now, I always subconsciously focus on my belly when I’m in a dream world; please do not ask me why. When I started dream worlding, I began with the same focus everyone else did – my hands but, as time progressed, I moved to my loins and I’m not sure why; perhaps it’s because I’m obsessed with a fat belly, or, even more likely, perhaps it is because this is where I believe my soul resides – the very most inner part of me.

Dream walking is a release, an escape, for me. I have developed the keen ability to close my eyes and fly from this world – the pain, tears, disappointment, judgement, and hatred. I am able to walk amongst those who know a different me; I’m not even sure who the  “different” me is, but she has not the cares that I have here on soil and cement. I am able to walk freely, run even. I am able to breathe without pain, walk without pain; I can even dance. I no longer feel the heavy heart of a broken soul when I am dream walking. I don’t have to pretend for everyone else. I don’t have to make everything perfect for anyone else. I don’t have to endure the isolation that illness brings, even when immersed in a crowd of people. I don’t have to apologize for my hopes, goals, imagination, or artistic nature that doesn’t quite meet the level of any linear-thinking person. Nay, in my dream world, I simply am allowed to “be”. No pain exists, no broken dreams, no real-life disillusionment or reminders that I am not perfect.

Sometimes, I know when I will be able to dream walk. I lay my head on my pillow, close my eyes, and focus on the internal pictures behind my eyelids. I actually see images, ghosts, colors. I know before I drift that I will enter this dream world and dance, run, and smile. I will breathe with relief and deeply. Sometimes, I don’t want to wake up, walk in the real world. When I do wake up, I am reminded immediately that I am no longer dream walking; excruciating pain jolts through my entire body – spine, right leg, both feet, knees, and hands.  My hips burn to the very cores of their bones, reminding me that I will not be jumping out of my down-filled bed with spring in my step. I immediately reach my left arm out to grasp the bottle that holds the tiny pills that will enable me to actually get out of bed. After 18 minutes, I’m able to lift my legs with my arms and slowly swing them over the bed so they can dangle for a few minutes before I attempt to creep, sometimes crawl, to the restroom adjacent to my bedroom. Then, I begin my day, my “list”; expending my spoons…

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Be Kind Anyway

Today was an amazing day; the sun was bright, the sky was clear, and the City was beautiful! My monkeys had the same thoughts the Universe did today; to be front and center, loud and proud.  My ankles did not resemble anything post-Neanderthal humanoid, my hands and fingers possessed more hot lava than a Hawaiian volcano, and my knees have been replaced by Chernobyl melons.  As an added funny, my monkeys decided I should not drive myself anywhere; in fact, I clearly would not have the burden of even hobbling down my front walk to my car – nausea and vertigo were award-winning today!  Yay me, I say!  Lemonade time was decided and I simply imagined new and exciting things to do on this beautiful day, which ultimately comprised of my beautiful son, No No, and two of his dear friends.  At 16 1/2, most young adults would choose anything over spending a BEAUTIFUL, CLEAR summer afternoon with their ‘rent, but my guy actually likes me!  He and his pals decided they would clear and clean my backyard for me!  This was a heart warmer for two reasons; 1. My backyard is not large by any inner-city means, but it has advantages to other homes in the ‘hood, and 2. I have not had anyone at my disposal for two years who could and would manicure AND maintain my backyard oasis, which includes a pond/waterfall (with a leak).  Have I ever mentioned I have four dogs who are not well mannered enough to attend regular play dates at the local dog park?  In age and seniority order, they are – 

1.  Jack Skellington, a 12 yr old, 70 lb Boxer;
2.  Peanutbutter, a 6 yr old, 11 lb Chihuahua;
3.  Cooper, a 2 yr old, 100 lb Catahoula Leopard Hound; and, my newest bebe’
4.  Mr. Rigby, a 6 month old, 1.5 lb Chihuahua.

These poochies are very spoiled – brushed every day, fed the best natural food, and more toys than FAO Pooch.  All my babies believe they are couch/lap pups…I’m not digressing, I have a point…they only want to go outside to go potty; and, they “potty” on demand, then promptly “demand” to go back inside with me.  Since my body no longer accommodates the dexterity I desire, I am not able to maintain the required clean-up process an outside area utilized by four pups needs daily.  No No, my hero of a son, volunteered to even clean all the pups’ poop and groom the yard!  He is truly an award winner; so much so that he would not allow his pals, Austin and Tyler, to clean the pup’s stuff – he demanded that he do it himself…I love my son and appreciate the fact that he respects others. Aaahhh, with all this said, my back yard is once again, semi gorgeous…slate stones and solid 500 pound flagstone steps are visible, the pond is ready to be repaired, the wild jungle look has been replaced with the clean cut, preppy college kid look and I dig it! Unfortunately, throughout the process, I was remanded to watch from the window; I’d rather be outside even, but my monkeys do not like the 100 degree temps and gift me rashes along my face and thighs.  

I paid the guys and even sprang for lunch delivery from Denver Deep Dish Pizza, which is YUMMY and only 10 blocks from my house. The guys even ate with me; I felt honored and their conversation topics were stimulating and interesting.  Through all of this, I was reminded how amazing life is and how wonderfully delicate the balance of all things is. 

No No fought against all odds to be here. I was told that, thanks to my monkeys, I couldn’t conceive; when I did, my specialist OB told me he’d never survive past the first trimester…I was elated when I entered my third and final phase of this post-womb adventure!  I was devastated when, in the last week of pregnancy, baby trauma set in and I was relegated to laying on my left side in bed without exception.  When that beautiful Saturday evening came and No No decided it was time, I couldn’t wait!  I would have delivered in 17 minutes, but, again, this was just not gonna be smoothe. The umbilical cord was wrapped around his neck THREE times and he bungeed for six hours before the delivery doc figured out what was going on.  By that time, I was on oxygen, an epidural, and lil No was on a fetal monitor.  The doc reached up/in and turned lil man to untangle the cord and No No rushed out to see the world!  A mere five pounds that I was sure had to be 8 or 9 because of his bungee jumping antics was happily embraced. Although he was without oxygen for a very long period of time, No No appeared fine and we went home…but this is not about baby deliveries…my point you ask…No No is a miracle for whom I’ve been thankful from day 1 and, believe me, I make sure the Big Guy knows how appreciative I am of his miracle…fast forward to 2day…

After No No and his pals departed for their hanging grounds, the skate park, I sat back, feet elevated, arms out, heart full.  I realized how truly blessed I am and have been my entire life. I have the most amazing parents on the earth, who taught me equality, kindness, value of the human soul, and right from wrong – true right from wrong – like ensuring I stop to help others when I can, work my ass off to accomplish anything, and accomplish I WILL; like never forgetting my roots when I get to where I’m going, that the journey is never over, and there is always room for one more smile and an extra face at the dinner table. They taught me to be kind anyway, regardless of what obstacles appear to be in front of my path. They are my heroes and I hope, one day, No No thinks of me like that, that I can give him the same lessons – the ones that never grow outdated and always apply. My tribe is almost as amazing as my ‘rents; they are always available to prop me up, hold my arm, and push my wheelchair.  When I was diagnosed, they were the first ones to say “we love you” – come home where you are cared for…They are my smiles on difficult days, for sure…I am blessed and thankful.

For all the challenges, nausea, vertigo, hot lava limbs, uncontrollable vomitting and “down” days I have, I have so much more to be thankful for and even greater miracles to look forward to. I am meeting the most wonderful people throughout my journey; not the “friends” I had when I was a professional – the ones who abandoned me when I could no longer pay for breakfast or lunch. I am grateful for those individuals too, because I learned much from them and understand the challenges having a sick friend bring; I do not fault them. They all have value and my life is better for having each of them in it.

I have been blessed with two lives – the one before I had my monkeys and the one I have now. I am excited for things to come and I will be kind anyway, regardless of the cloudy days and rainy nights…

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Things I’ve Learned About Chronic

“I may have mentioned this”…this is something I say a lot; it’s my default comment to almost everything I say of value and for many things that are not of so much value. I simply cannot remember things – most things, at least recent things.  So, I usually use the precursor, “I may have mentioned this”.  My monkeys have destroyed much of my cognitive and neurological prowess. I miss my brain most of all.  I remember when I learned of my second diagnosis, RA, that I was relieved it would likely not take my brain, at least not right away.  I always said that I could handle most things, even running in a wheelchair, as long as I had my brain (que ALS thoughts and how horrible it could actually be)…

I spent the first five years with RA relatively comfortably; this monkey took its time destroying my life, like a tiny invasion of aliens, iridescent aliens; the ones you cannot see.  I still worked out two hours a day, six days a week, ran my company, and continued traveling at a furious rate for the improvement of lives on the fray.  Then, as if snatched overnight, I woke up without the dexterity needed to hold even a five pound weight and steadying my core was out of the question.  I altered my routine to include more yoga and Pilates and less weight/core training; that soon slipped beyond my grasp as well.  Again, I transitioned my routine from two hours to a simple half hour of gentle yoga to keep my muscles limber.  The monkeys were waging a war and I was not equipped with the weapons I needed any longer to win the daily battles, so the war seemed to be over.  I decided to try meditative pain management; it was a literal life saver. I learned to “see” a bridge and a nice valley that would “hold” my pain for me…it worked some of the time and enabled me to start each day without the excrutiating pain in my body overcoming my mind.  I will not lie and say it worked or works all the time, nor will I say it removes the pain enough to allow for a gentle walk through life, but it does help me mentally, even on days when my brain is not so mentally capable of decisions or thoughts.

As my monkeys began to take over my daily life, more came to roost, most of which I’ve mentioned. Perhaps singularly, these monkeys do not have enough power to win at the thumb wars they initiate, but when hooked monkey arm in monkey arm, they can do some damage; this is when they started to erode my brain’s IQ, EQ, and all the other Q’s that exist. It started slowly enough; I forgot where I put my keys, which I found later in the fridge or dryer.  I got lost on a one road trip to the pharmacy, one which I’ve driven a zillion times.  I would even forget what I wore the day before, if I took a shower an hour before, or if I’d remembered to take my morning dose of 17 medications. Everyone giggled, even my specialist chalked it up to pain overpowering me to the point I could no longer neurologically manage daily routines.  I didn’t buy any of it and, as the deterioration increased in both speed and damage, I asked my numerologist to help me find answers; she ran a battery of tests, most inconclusive. She tested me for Lupus on the brain, the most obvious culprit she thought, as well as a slew of other tests, including MS. MS is still on the table, although the MRI came back negative.  My entire right side began to falter; it took more days off than even the most tenured of people have for vacation after 20 years. I felt helpless and horrified – the inconceivable was happening; I was losing my extremeties AND my brain! I cried when I couldn’t find words for the most basic of sentences and began to avoid going anywhere when my ability to make even simple change at my salon became the most difficult algebraic problem. I was self-conscious and timid, more so than I’d ever been in my life. If you can’t add $6 and $24 your life stops you in your tracks; thank goodness I could still read, even though it is a never-ending challenge when it comes to comprehension. I find myself reading the same passage over and over again, in an effort to understand the author’s intention, often with no success. My neurologist is simply tracking my deterioration and my rheumie is no longer lumping this nightmare in the pain syndrome category. My neurologist made a formal checklist for me to post and follow daily, beginning with get out of bed, shower, brush teeth, etc. I still use it, two years after she issued it.  When my brain is at its lowest functioning point, I notice my vertigo, as of yet undiagnosed, is also at its worst; nausea to the point I cannot walk far and cannot risk driving, dizziness so bad I feel as though I’m permanently on the tilt-o-whirl ride at the amusement park, and uncontrollable lower limbs, mostly on the right side, including numbness.  This added adventure has really increased the mystery of my chronic life and I’ve learned that even vestibular therapy does not work – sometimes it ends with uncontrollable vomitting. My monkeys are gaining ground in their efforts to destroy me, but I’m not giving in just yet; humor has its place everywhere, even in chronic illness – never underestimate humor.

As a woman who used to believe she was invincible and could do anything in the world, I’ve learned some valuable lessons, indeed. This fast-moving train does not have brakes, nor does it have empathy. Every day is a new adventure and I can never be sure how “alert” or “ambulatory” I will be; I tell myself that knowing everything about the future would be no fun anyway and I should simply enjoy this super trippy journey – there is, after all, a reason, right?

Shortly after being diagnosed with RA, I saw an astrologist, a “seer” of sorts. She was amazing, truly; so much so that Princess Diana’s ex Prince sought out her counsel. She told me many things without knowing anything about me; things that were directly correct and that no one should have known.  She also told me three things I have never forgotten. 1. She told me that in a couple of years, during the summer, my life would change to such a degree that I would never recognize my old life. I thought, of course being the self-centered person I was, that I would win the lottery (even thought I didn’t ever play) or I would marry wealthy and move to an exotic place – neither of those became reality, although I certainly do not recognize my old life in my current existence.  2. She told me that she had only seen one chart darker than mine – hers.  She was diagnosed with cancer five months later and sadly succumbed to it soon thereafter.  She did add that the darkness would go away; I’m not sure if she said this to make me feel better, but I cannot get it out of my head most days.  3. She told me that I would not live long enough to be a bad person. Anyone who knows me knows that I worry about being a terrible person, about wronging others and about hurting other people and the environment, animals.  When she made this last point, I froze and almost dropped the phone; it was, and is, truly something that haunts me.  I was relieved, I think, although I still worry about being a bad person, whatever that looks like. I try to help other chronics, Spoonies, as much as I can, and I work hard to keep the peace with everyone, which usually ends up with me taking the brunt of hatred or blame in every situation.  I miss her every time I think of her and I often read my chart reading to remind myself that she was both amazing and insightful.

I know I have the ability to change my future; I hold the pen to that novella, and so do you, fellow Spoonies. Do not allow your monkeys to trample your magnificent multicolored quilt of life; take the lessons and pay it forward, but never, ever give in… 

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Search for Meaning 2.5

This weekend was clarifying for me. I learned I cannot post as many updates as I want, when I want. I started this online journal as a way of retaining my thoughts, capturing my good and bad days, and preserving the deterioration of my joints/body/neurological functions. I knew I would never be a “star” Bloggress; this is, after all, for me – well, me and others like me. I want to help others through the many stages of chronic illness grief and I want to let them know they are not alone.  I designed this blog and then put on one or two posts; the blog sat dormant for a year while I struggled with my monkeys, medications that didn’t work and a body that didn’t work.  I really had very few good days, if any.  Then, after talking with some very good, close friends, who offered to do the typing and proofing when I could not, with me dictating, and some other logistics, I rebooted my online dialogue with myself.  It was refreshing initially; I thought the system of delivery was good and I had fun. Again, turmoil; more bad days than good…additional medical challenges have forced me to put my iPad down for more days than I’ve preferred.  I feel defeated…

My other clarification came in the form of a mirror; I realized that my internal body hates me and refuses to adhere to the annual calendar everyone else does.  It has somehow determined that time does not care about heroes and, indeed, it does not stop for anyone or anything. In fact, time is racing against me. My hair is falling out, rashes seem to love me and the sun abhors me. Bruises come out of nowhere and last for two years running now. The once amazing rockstar that I was, sitting on top of the proverbial world, is now but a fading ball of obnoxious gas, barely glowing at times, held together with duct tape, braces, creams, and special gloves. I am running out of time and beauty products; there simply are not enough of either to create the facade that I’m the once happy, fly-by-the-seat-of-my-pants gypsy I was.  However, I do still have some rules I will not break, nor will I allow them to bend or creak.

I still believe yoga pants are not a fashion statement, regardless of how comfy they are; a girl simply must take the time to choose an outfit for the daily runway, even if that runway is only the front porch to the car and the parking lot to the doctor’s office. Your outfit sets the energy for the day, even if you are settling in for a binge of OITNB with your poochies.  Fabrics, colors, flow, and accentuating your assets are all part of your mystique and you cannot allow yourself to become such a low priority that these things no longer matter – trust me, they DO matter, and so do YOU.

Second unbreakable rule – hair matters!  When I “retired”, I promised myself that I would NOT become the cat lady who collects dogs, living in her bathrobe, hair undone, no makeup, and slippers as a daily shoe choice – not even as a fleeting thought. I still manage to have my hair trimmed, colored, and, at times, when it falls out more quickly than I can collect it from the drain, shaved with a 2, 3, and a bold color choice.  The last time I buzzed it was two summers ago; it was falling out so badly from the chemo infusions, I really had no choice. My hair artist extraordinaire, Connie, is a true cut/color genius.  She buzzed it into an amazing asymmetrical pixie and bleached it white with some blackberry chunks along the front; it was amazing and I didn’t feel like a boy.  On the contrary, I felt liberated and sporty!  Truth be told, I could no longer hold my arms up to blow dry my hair and my hands couldn’t hold the flat iron, which resulted in many burns and several dropsies.  As my hair grew in, I saw healthy growth and decided to give it a chance to redeem itself, and it did; until now. It’s falling out at an alarming rate again and I’m not even on an infusion schedule anymore, as I’m allergic to all DMARDs, but I digress. Connie faithfully accomplishes the impossible every three months – I go in, she bleaches, colors, and trims me into a new look that is sure to replicate itself without any effort for at least 12 weeks. This was one self-pampering checklist item I could not eliminate when my health and budget took a nose dive.  A chronic girl should have a great hair artist who can give her something she can accomplish quickly, under 10 minutes, and which will last in case she cannot shower or get out of bed for a few days – Every chronic girl needs a Connie.  And a great hat.

I never used to consider myself a hat girl, but then I never used to consider myself a “flats” girl either; come to think of it, I never used to consider myself a lot of things girl…then things changed…

Stone Rule 3 – A full face of makeup may not be realistic for even the most glamorous gal, but four staples can never be eliminated, regardless of anything one can imagine, and all can be purchased for as little as a total sum of $30 or as much as one’s budget and the local Ulta’s stock allows.  We must never be without *eyebrows *eyeliner *mascara and *lipstain/lipstick.  A full face for me these days includes three additional items – soft pink blush, photo ready iridescent powder, and cream brow powder.  With these items, my face transforms into a happy, sun-kissed picture of health, ready to go from afternoon tea to evening dinner in a flash…okay, not really a “flash” flash, but at a fairly acceptable rate, depending on hand dexterity.  However, even on my most hermit of days, my mascara is on, brows are defined, top liner in place, and lips are stained. I don’t do these things because I am vain – let me be very clear – I don’t do these things because I am vain. I don’t take the 14 minutes to add these accents to my face for anyone else or for fear that I will scare small children. I take the time to perk up my eyes and lips because it makes me feel awake and alive; like I am still a part of the daily buzz that is life outside my walls of this chronic life. I do this for the same reason I wear very pretty panties and bras under my carefully selected, albeit simple, outfits; I feel better about “me”. I think every chronic girl should find something that helps her feel better on those downest of down days so when she feels nauseous and retreats to the restroom, looks in the mirror and expects to find a pasty, blotchy face with sunken eyes, she might instead find a glimpse of the girl she is inside and smile, even the tiniest grin…

 

 

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Dirty Feet

It’s Saturday; I had my wires pulled yesterday and, after a long 8-day spinal cord stimulator trial, my doctor is not inclined to move forward with the permanent SCS.  We decided to do a cervical trial, however, which he thinks will give me additional improved mobility of upper extremities and lower extremeties, but not decreased pain in my back, which I wanted.  I did not experience a 50% improvement, which is required to move forward with a permanent implant, but if the cervical trial works, which Dr. D. thinks might, then we will go that route instead of the lumbar region.  The trial left me with increased nausea and diminished control over my right leg, if those things are even possible; both of these issues concern me but I’m hoping they are temporary because I was really banking on the SCS as a major pain reliever and mobility enhancer.  I might have mentioned that when I was hit last year by an uninsured, unlicensed, illegal driver, my world came crashing down…did I mention that? I was hoping that by adding an electrified foreign object inside my body, I would find relief from the constant pain and be better able to walk than I am now…time will tell.  The cervical trial is in a few days, fingers crossed

Finally able to shower fully, I immersed myself in a steamy shower, followed by a chilled rinse yesterday.  Today, I retreated to the mountains of Coal Creek Canyon, deep within Golden.  My hammock lies between two trees of solitude on 2 acres of nothing but nature; no houses, no power, no commerce, no civilization, no internet, not even cell service; just animals, dirt, a soft breeze, and 10 degrees cooler than Denver proper. It is here I am able to truly disconnect from the world immerse myself in the Universe of Mother Nature. I can close my eyes and wander far away, blue skies and soft winds carrying me to another place, another time. Nature is a healer, a remedy; if you don’t believer, remove your shoes and spread your toes in some dirt for a mere 15 minutes and tell me you don’t feel better.  Nature clears your head and heals your heart; it can also talk to you. If you listen closely, it can tell you how to heal your body and exactly what you need to do that…

I love to lie in my hammock and stare at the sky, identifying people, places,and things in the clouds; I used to do it when I was a child and now I do it with my grandchildren. LaLa and I did this today while lounging in Hannah (our hammock’s name).  We saw a dragon, tree, monkey, dog, bear, and a unicorn while lazily swinging in Hannah. I enjoy going to the mountains, in part because I unplug, relax, and re-connect with nature, and, in part because it is at least 10 degrees cooler than my house, as mentioned earlier.  I still get the rashes, mouth ulcers, swollen joints, and extra exhausted exhaustion, but I really like to be embraced in the earth, surrounded by nothing but singing finches, ravens, and mesmerized by the occasional brown bear and families of deer. I love the tall trees engulfing me as I lay in Hannah, dreaming of healthier times, dozing off to the warmth of the sun on my face and the soft chatter of all the critters who live in the canyon and have graciously allowed me to invade their lives for an afternoon.  The weather is perfect, company could not be better, and my mind clears…clears like the ocean calms on an early spring morning…glassy and smoothe, sun just rising, early waking gulls making their moves, and not a cloud in sight…that is my mind up here in the mountains – not a thought about illness – not a worry about a medical bill – no phone calls from medical bill collectors – no mail piling up because I get confused when I muddle through – no confusion at all – just me, my dirty feet, the animals I love, and nature….quiet and serene…

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