Search Results for: paying a steep price

Paying a Steep Price of Admission for a Little Fun


Well, I decided to go to the movies with a girlfriend yesterday, and, boy, did I pay a steep price of admission!  And I’m not just talking about the $10.50 at the door.  It was one of those nights where my body set up revolt against me as soon as I returned home.  I know, I know! The nerve I had engaging in an activity where I sat for 2 hours.  How the heck did that “strain” weaken my body? 

But, it did. I just never know what is going to trigger an avalanche of unpleasant symptoms.  It’s the enigma of my disease. And, I like puzzles, don’t get me wrong; I’m just reaching my limit on how many more twists and turns I can handle from my own body.  This time, it just didn’t respond well (big understatement!) to being still and stiffened for a prolonged period.   But most likely it was a culmination of all the stress and strain I have endured over the last two weeks; all those tiny little fissures in my carefully balanced everyday existence. 

So, last night, I come home from watching The Heat, still chuckling at the crazy antics of Melissa McCarthy.  I was feeling positive that I nurtured my mental health with a little laughter therapy with a friend.  But as soon as I settled on to the couch, I could feel “The Change” coming on.   It sounds like I am The Hulk, but in some ways that’s exactly how I feel!  My body loves to play Jekyll and Hyde on me, and I never know when this painful transition will occur.

It starts with a deep fatigue settling into every fiber of my being and I begin to feel separated from my conscious mind.  Then the nerve sensations strike up their marching band… this last development being the worst.  “Nerve sensations, what’s that?” you may wonder.  It’s the hardest to explain, but I’ll give it a go: imagine feeling like you’ve just been plugged into a socket and electrical impulses are shooting up and down your arms, and even worse, up and down your spine.  Then the “creepy-crawlies” start, like minute bugs crawling beneath your skin.  Your skin stops being able to regulate its own body temperature and you fluctuate between feeling hot and clammy and cold and goose-bumpy. You may experience the sensation of “walking on hot coals” and/or numbness and tingling in your extremities and down your arms. Your joints become stiff, your balance is off, and you lose all depth perception.  Sometimes a little vertigo is thrown in the mix for good measure- yeah! Then something called “hypergelsia” kicks in.  This literally means: “Hyper-Sensitivity.”  The skin on your body reacts to the slightest touch as if you are being burned or stabbed… think of something extremely unpleasant!  This “touch” can come from another person, but it can also come from the whisper of a breeze on your skin, or even worse, just the touch of the couch beneath your body. 

Last night, my body was in the throes of all of the above!  The only thing I gratefully escaped was the vertigo, but I had a killer headache in its place.  It is so difficult to explain to someone else what this is like.  As you can tell from my description, it’s all very abstract… “Plugged into an electrical socket?  The feel of a blanket, hurting you?!  All sounds pretty wacky to me!” But, I hope you can suspend belief for a short bit, and try to just get a glimmer of an idea about how this must feel for many of us with autoimmune disease (like mine, Relapsing Polychondritis), chronic fatigue, fibromyalgia, migraine disease, Lyme disease, etc… These are not just the “silent diseases” they are also ones that just at the beginning of last century would be labeled “hysteria.”  And you can see why… it sounds like I am hysterical.

But, what is actually happening is that my body was exposed to too many stimuli and it is attacking itself.  It no longer has the natural defenses to process multiple stimuli, stress, environmental toxins, bacteria and viruses.  It sees everything as the enemy.  And when my body feels attacked, it attacks back.  Unfortunately, somewhere along the journey, it lost the ability to distinguish between harmful elements that need attacking (from the flu to cancer) and those things that are naturally occurring substances that are vital to my body’s health.  It now attacks anything and everything.  The things most often in its path?:  my own body, cells, nervous system, bones, cartilage, internal organs, etc.

For me personally, this attack can look like anything from my colon perforating, to having a heart attack, to my kidneys failing, to full body rashes, to histamine reactions (like I’ve been exposed to an allergen), to destruction of my cartilage, to degenerative spine, to full body hyper-sensitivity.  And, surprisingly, the most difficult thing on that list is the last one.  Because doctors, for the most part, know how to treat the “bigger,” more concrete reactions.  But how to treat a crazy list of symptoms like the ones above?!  Therein lays the mystery.

So, that brings me to last night where I was writhing on the couch like a drowning worm.  Struggling to find a comfortable position; changing my positions as often as one madly clicks through a hundred channels on the T.V.  I was groaning and crying.  Whining to the Universe, “I just can’t take this anymore!”  Absolutely nothing helped… not even “knock you out doses” of valium!

And my husband sat helpless to help and I sat helpless to ask for help.  He kept saying, “What’s going on?” and “What can I do?”  With each repeated question, his anxiety levels rose and his voice became more and more agitated.  And I felt increasingly powerless in how to explain what was going on.  I know his frustration wasn’t at me but at my illness and his inability to find a “solution.”  But the only answer to “fix me” was TIME.   I just had to wait out the storm.  And in the meantime, having him rub my spasming spine and hold my hand until I fell it to a fitful sleep was the best medicine.  To know I wasn’t going through this completely alone.

And I made it through the night!  Which makes me want to cry in relief.  I still feel almost hung over and like my body was in a car accident.  But I’m able to sit here and type, so I must be doing better.  Now the tricky part is taking care of me over the next couple days so that my body can heal.  And does this mean that next time I’ll skip the movies?  No way.  Because unfortunately the trigger to these episodes is always different.  But, I guess that’s a gift in some strange way. Because I can’t predict what will set me off, I also won’t keep myself from truly interacting in life because I am in fear of the “what if.” This doesn’t mean that what happened last night doesn’t scare the bejeezus out of me.  It does!  It just means I’m not going to let that fear rule my life.

I am going to keep on living today, no matter the consequences!


I Am One Big Ball of Raw Nerves

Mihail -Miho- Korubin ; Oil, 2012 ~ "It Is Over"

Mihail -Miho- Korubin ; Oil, 2012 ~ “It Is Over”

I am a bundle of nerves; raw and jangly, the all of me is on edge.  I just went to my pain doc to try and get some relief from this “nervy flare” and had to not only explain it all to a medical resident who spoke broken English, I then, one hour later, had to repeat the same info to my doctor!  It’s hard enough to communicate what is currently going on with my regular physician, let alone trying to explain it to someone who speaks a different language with me!  Can you hear my frustration yet?

But, truly, I am exasperated with my on inept body; at this flare that was triggered almost two weeks ago and won’t let up. (see: Paying a Steep Price for Admission) I feel like every nerve in my body is frayed and hyper sensitive! And I mean sensitive!!  How to describe this pain?  This electrical, bug-crawly, burning, tingling, spasmy, hot, numb combo?   It’s the Nervous Wreck Cocktail, that’s for sure!  It’s like my body has decided to revolt against everything!  Touch=Bee Stings; Breathing=Fire; Walking=Hot Coals; Just Being=Buzzing Electrical Wires.  And the strangest symptom of all?  My histamine system jumps on board and starts reacting like I am being attacked by a horde of allergens; I start sneezing uncontrollably, eyes water, face puffs up.  I know, sounding crazier by the minute!

And if I can’t clearly explain it to myself, how do I expect others to understand?  I guess I just hope.  I hope that the doctor won’t look at me with that slightly confused visage, wrinkled brow, sad, concerned eyes, downturned lips… I can almost see the wheels in his head screeching to a halt, not sure what direction to turn next.  He’s very empathetic, that’s a positive.  He kindly puts his hand on my knee and apologizes for my pain.  He tells me how strong I am in the face of so many difficult situations, but that he can tell how much this current scenario is negatively impacting my life.  OH, really?  Were the tears a clue?!

And apologizing for my pain?  Shouldn’t he be apologizing for not being able to figure out how to treat my pain?  I know he feels bad… I do too!  But, the pain is there, so what are we going to do about it?!  Can’t do any of the typical treatment modalities, because I’m either already on the highest dose of a medication or have tried it and stopped for some reason or another.  He finally comes up with a “new one:” Nortryptyline at bedtime.  “If we can at least get your sleep better, than hopefully the pain will follow suit.”  Like I haven’t heard that one before!

And I hate this.  Because it’s so not like me to rant!  I don’t know if it’s the freedom and acceptance of this blogging world that has opened up this damn of pain or what.  It’s these damn nerves!  They set everything afire!  Uh!

None of this is really helping the pain to go away.  But, to know I am no longer holding this space alone (see: A Cosmic Connection) helps to diffuse it, even just a tiny bit.  Thank you for holding this pain with me.

I do believe that this is the greatest gift of this forum:  A sharing of energies, a collective soul.  We are all going through our own struggles, yet by bringing them out into the open, we are no longer carrying the burden alone.  And, selfishly, I think I hope deep down that someone out there will read my post and understand: truly “get it.”  And then I won’t feel so alone anymore!

And that’s what I forgot for a moment.  I’ve been afraid to let people all the way in right now.  To let them see how severely I am hurting.  I’ve been afraid of sounding “crazy” (I mean, come on, who says they feel like bugs are crawling under their skin?!).  I’ve been afraid of getting more of the “sympathetic, she’s sounding a little wacky, but I love her anyway” looks.

I don’t need your sympathy.  I need you to say, “Wow. I can’t imagine what you’re going through, but that must be really hard;” and to hold the space of pain, confusion and fear with me.

I don’t need you to try and suddenly change our relationship in order to make me better, to “fix me.”

Because I don’t know how long this flare will last.  And I have to remind myself; I don’t need to figure that out.  I just need to get through today.  I just need to remind myself that this will pass; and, that, until it does, it’s okay to reach out to others and say (scream?), “I’m hurting!”  And to admit that I can’t engage in activities right now, but that doesn’t mean I won’t always be able to.

Just for today… I need your love.

Just for today… I don’t need you to understand exactly what I’m going through, I just need you to accept me.  To accept the all of me.

Just for today… I need to feel like I’m not crazy.

Just for today… I need to cry.

Just for today… I need to count the minutes, because I don’t know if I can make it through the next hour.

Just for today… I need you to know I don’t mean to be short with you, I’m just on edge.

Just for today… I need you to know I may feel fine one moment and horrible the next.  I’m not trying to be inconsistent; my disease is inconsistent.

Just for today… I need even more of your love (and maybe some extra hugs, too!).

Toeing The Elusive Line of Life


I am always trying to pin down that elusive line between doing too much and not engaging enough.  Dancing just over the edge into the land of “I am going to enjoy this adventure today even though I will ‘pay’ for it later” and standing at safe distance back, “forgoing opportunities for the sake of protecting my body from the ‘over-do’.”

To me this line is LIFE.

And I am not ready to give up on life yet; to fade into the background, observing others from behind my own personal protective observation glass.

Yes, this option ensures a more stable physical state of being. But it doesn’t guarantee it. I am just as likely to experience an unexpected (I was going to say “unplanned for,” but aren’t they all?!) flare of my physical symptoms after days resting “safely” on my couch.

And there is always one thing that suffers from my hesitancy to participate… my emotional well-being.

So it all comes down to another elusive concept: BALANCE.

I don’t think this is a plight just of the chronically ill.  We may suffer more serious consequences for misjudging our abilities to participate, but I know just as many well-bodied friends who also struggle with this.  Their “price” may just look different: stress, fatigue, or loss of time.

As I tiptoe around my Line of Life, I am getting better acquainted with my limits. For me, I know I will pay a steep price, so I weigh my options and choose the ones that are the most appealing and unique. 

I now pause before I make any commitment (I used to “over-commit” to everything for fear of saying no, only to have to constantly cancel at the last minute, frustrating everyone).

I check in with myself- mind, body and spirit.  I take my own set of vitals, so to speak.

And, no matter what my decision is, I try to clearly communicate with the invitee. I think the guidelines I have set up for myself can be applied to a wide range of situations and people.

It usually comes down to three categories:

  1. “I’m sorry, I have to decline this time. But please don’t let this keep you from asking me in the future [big fear=being “forgotten”].  My physical well- or unwell-being is constantly fluctuating.” (insert your limits: time; commitments; family obligations; job stress; etc.).
  2. “If it’s okay, I am going to have to wait and decide nearer to or on the day of.  I’m just not sure how I’ll be feeling from day to day right now and I don’t want to over-commit.”
  3. OR: “I would love to accept! I am planning on being able to participate but if my body takes a down-turn, I may have to change plans at the last minute.  Are you okay with that?”

I have discovered that the honest approach best serves myself and others. Most of us want to “people please” and in doing so can create an environment of always saying “yes,” leading to feelings of stress and resentment later or a constant cycle of saying yes and then having to change our minds/plans.

By giving people an open look into your life, you are showing trust in the relationship.  As well, I try to always give people the option of letting me know if last-minute changes are uncomfortable for them.  Of course I wish everyone could be supremely flexible to my needs. But some cannot. And this is all part of accepting both my and others’ limitations.

You’ll also begin to discover the friends who truly do understand and are willing to adjust the typical “friendship guidelines” to maintain a relationship with you and those that are just “good time friends.” And that’s okay.

The week-end before last was one of those “seize the moment” opportunities for me.  A friend spontaneously invited me on Thursday to accompany her to Pittsburgh, PA for a one-of-a-kind puppet play by Heather Henson (Jim’s daughter- yes, The Muppets’ Jim!). Now, this was a huge risk for me. It was for just one night and would require a minimum drive of 6 hours both ways. Two “no-no’s” in my typical Boundary Box. But sometimes boundaries are meant to be broken, and this was one of those times.

Not only was it an amazing adventure and bonding experience with a dear girlfriend, it provided me a chance to be honest about my chronic illness in a way I have not before.  Traveling that close with some requires intimacy and vulnerability. And I was proud of myself for not hiding behind the mask of, “I’m okay.”

She knew I had to make many rest and stretch stops.  She saw my feet and ankles swell to the size of Nerf balls. She observed my nightly ritual of 20+ medications. She listened to me when I explained the complexity and history of my disease. She witnessed the “sudden coming” of a severe migraine. She saw me grow breathless because of my pericarditis (fluid around the heart) and the necessity of many “sit and rest” periods as we trekked around the city.

She saw the all of me. And she embraced and accepted me as I am.

Yes, I’m paying the steep price of admission still now 7 days post, but I wouldn’t have changed a thing about this experience. Can I always make this choice? No. But I am also not going to let my fears get in the way of considering similar spontaneous opportunities in the future. I used to always live my life this way… seizing crazy last-minute excursions left and right. And I forgot how much I love that.

I forgot what it is like to not only dip my toe over the edge into the Waters of Life, but to plunge head first into the icy chill of the thrill only to come up breathless by embracing the All of Life.

Where are you making choices in your life that serve not only your physical and mental needs, but also your spiritual and emotional needs? Perhaps you aren’t shying away from “frivolous experiences” because of the limitations of an illness, but because you are overwhelmed and stressed by the sheer complexity of living and balancing life, work and family.

Where and when can you throw caution to the wind, even for just an hour, and do something just for the sake of doing it?

Go on… life’s waiting for you!

Battling The Post-Vacation Blues (and a few odd bruises too!)


Why does the first day after returning from vacation hit like a ton of bricks?  All the physical reserves of energy and stamina I greedily tapped into are now depleted and I feel every ounce of my chronic pain rearing its ugly head at me; mocking me with an “I told you so.”  I’m now walking around like a bleary eyed, stiffed limbed tin-woman, marveling at the marked change between how I felt just yesterday with today.   Parts of me I didn’t even know could experience pain do so anyway, like the tip of my tongue. How crazy is that?

Not to mention the emotional let-down that occurs following such a satisfying event.  Mid-way through vacation, I find myself cheerfully commenting to my hubby, “Why, we still have half of our vacation left! It’s already felt so long and satisfying. I can’t imagine wanting more!”  Ha! Famous last words.  Then the second half goes by twice as fast as the first and by the time we’ve reached our final day at hyper-speed, I am digging in my claws; determined to hold on to the fading remnants of this break from reality.  We even start the “bargaining process”: “Well, maybe we can rearrange things so that we can stay just one… more… day.”  But, let’s face it, one more day is never enough!

There is just no way of avoiding the dreaded Post-Vacation Blues!

There is something magical that can happen on a vacation.  It truly can be a break from reality for me; the reality of my illness, my pain, my lack of abilities, . . .  I’m not saying I feel no pain on vacation, it’s more like I can take that pain and put it in a little satchel I carry with me.  It’s always there, but I’m no longer wearing it like a cloak.  This was one of those blessed times.  We spent a week at the place I reverently call my “Sacred Space.” It’s a family cottage that we have spent many a time at over the last 21 years and it is the place I let my soul travel to during meditations.  So it’s not surprising that it acts like a healing tonic to cure that which ails me! This phenomenon hasn’t always happened to me, but when it does I want to fight tooth and nail to keep it going.  But, alas, even fairy tales have to end at some point.

So why can’t I just feel satisfied with this gift I received?   There have been (many) times I have not been able to fully enjoy a vacation: either feeling too sick or in pain to fully engage in it or, even more distressing, being rushed to some remote hospital for an emergency situation. We used to joke that most people research “points of interest” before going to an unknown vacation locale, while we would research hospital and urgent care locations.  Humor is sometimes the best defense, right?  Then there have been those times I wish I could erase from our history.  Times trips were planned and had to be cancelled because the doctors told me it was too risky for me to travel.  This includes a trip to the Riviera Maya in Mexico to renew our vows on our 7th wedding anniversary.

Put in this context, I am willing to sacrifice days after my vacation for the days of respite and renewal I experienced while on vacation.  And although I did “over-do it” (hard not to with physical limitations such as mine!), I did make conscious choices to keep my activities within my reach.  Most of our days were spent sitting water side, drinking in the sun’s Vitamin D, reading, painting, playing games and musical instruments.  It’s a little depressing to think that these mild activities wiped me out.  That today, in reaction to a week of this, I am swollen, stiff and sore!  Not to mention the strange bruises that have bloomed across my body! But the fact that I sustained daily activities for 7 days is truly a miracle.

And the biggest blessing of all?  This time, on our 14th wedding anniversary, we did renew our vows (a promise we made to each other when we married on the date of our 7th year dating anniversary… to recommit our love to each other every 7 years thereafter).  It wasn’t barefoot on a beach in an exotic locale.  But in its quiet way, it was more intimate and allowed us to freely share our love that has come and is yet to be.  We sat by the Great Lake Ontario, which in this location looks as mighty as any ocean, and read all parts of the ceremony we wrote together.  We were in awe of the words we had chosen then, so many prophetic of the challenging times that were yet to come.  I was able to express to my husband how truly grateful I am for his support, love and encouragement in difficult times and in joyous times.  I thanked him for always choosing to run towards me instead of away.  All of this was exchanged, outside, our bare feet on Mother Earth with the sounds of the waves and steel drums in the back ground (a recording of the steel drum band we had perform at our wedding- the best gift we every gave to ourselves).

It’s no wonder I never wanted this vacation to end!  There is a re-connection that happens in times like these that rarely happens in the daily hustle of life; a reconnection to each other, to our own selves and to nature.  I got in touch with my intuitive voice, heard loud and clear without the interruptions of traffic, obligations, ringing phones (another unique gift: no internet or cell service to be found!).  It’s a rare treat to be cut off from the outside world for a week.  To have a break from the incessant worries chronic illness brings. So what if I’m having trouble walking today!  I have a lot to show for this “price of admission.”  (read HERE).  And, going forward, I plan on trying to weave threads of vacation-ease into my daily living.

Feeling My Feelings: I Can Be Both Strong and Emotional


So, time for another round of back injections.   A true pain in the butt!!  Yet, I was taking it all in “typical day stride” until I told a new friend yesterday that I would not be able to get together today; explaining that I will be otherwise indisposed.  And her reaction surprised me.  I recently found out that she, too, has an autoimmune disease.  We don’t know each other well enough to share details but I assumed she was familiar with the constant juggle of symptoms, pain, treatment options, appointments, etc.  You know, the ol’ Chronic Condition Round-Up:  “Admission is steep, but the ride is never the same!”  And I am sure she has her own daily struggles, but her gut reaction to discovering I was going to have corticosteroid injections was filled with compassion, awe, and even a little fear.  She instantly responded with “Oh, bless you!  I am so sorry you have to go through this ordeal!”

Ordeal!?  And that’s when I realized, it is an ordeal.  I am so used to being poked and prodded, that I have become numb to it all.  And, truly, this has been a very effective coping mechanism.  I think if I let down all my defenses, I would become paralyzed.  Because when I pause to think about everything my conditions entail on a daily basis, it is extremely overwhelming. And when this friend so clearly reacted to this, I became uncomfortable.  She was shining a light on my dirty little secret: my life is hard.

Three weeks back, I was “poked” in one form or another 3 out of the 5 days.  It began with a PPD test (Tuberculosis), no big deal but a prick just the same.   This was just the warm-up though; on that Wednesday, I had double corticosteroid injections in both my sacro-iliac joints (tailbone) and my bursa (hip).  Then I rounded out the week with 20+ Botox injections in my forehead, temples, and neck (for cluster migraines); imagine being stung two dozen times in less than 10 minutes!  And again, when I relayed my weekly adventures to friends and family, it was like I was informing them of that week’s weather patterns.  “Oh a small storm front came through in the middle and end of the week, but for the most part, skies were clear and sunny!” My voice was even, the facts were relayed without feeling; I had lost all affect.

Perhaps I need to pause.  And hold my own space for a little bit.  To give myself a hug.  To let myself know that I am proud of the strong and resilient woman I am.  To cry for all I have to endure on a daily basis.  To mourn for the pieces of “normalcy” I have lost, and will never regain.  To celebrate the Survivor that I am.  To appreciate and honor the fact that I don’t let my illness consume the all of me.  To feel my feelings, whatever they are.  To just be.

I get uncomfortable when others are sympathetic to my plight.  I still struggle with vulnerability.  And in accepting that others don’t view me as a “sympathy case,” they just have empathy and respect for my daily struggles.  And even more so, for how I choose to handle these situations.  Those are the pieces within my control.  And it’s okay for me to have pride over my tenacity and courage in the face of some very difficult daily hurdles.

Each day of my life is like walking through a field of landmines.  They’re old landmines, some are deactivated while others are extremely unstable and reactive.  I never know which one is going to go off or when I am going to trigger a reaction.  Prime example? The Steep Price of Admission I paid for going to the movies with a girlfriend the other day.  But even since then, my body has been “a-buzz.”  It’s like a feeling of after-shocks that will suddenly shoot down my arm or explode up my spine; intermittent and completely unpredictable.

And then lying amongst this field of mines, are hurdles.  Those steep inclines I know I’m going to have to muster the strength to surmount.  Like today’s injections.  I know in the long run they will (hopefully) provide relief.  But in the short term, I have to accept increased pain and aggravation of my symptoms.  I also have to measure the risk of even trying these treatment options that provide sporadic results.  The sacro-iliac joint is the most difficult joint to inject.  It’s nestled deep amongst tissue (nerves, muscle, connective) and is a very small opening.  I’ve observed them searching for it on imaging, watching this enormous needle poking around inside me trying to find the sweet spot.  There is no guarantee that it will hit its mark.

And that’s where I just have to remember to bring it all back to today, to the present moment. Because if I (and many of you!) were to let my mind expand and wander into the days before and all the days to come of this illness and its trials and tribulations, I would curl into a ball like a potato bug and hide forever behind a hard shell.   This is not an acceptable answer for me either.

So, where does that leave me, today?  The conversation with my friend yesterday and my meditation on this today, has given me a clear direction.  It’s time to re-focus my energy on Balance.  Often, I equate this with the delicate balance of doing just enough activity (not too much, not too still) that will support my body’s health without sending it into a flare.  But, today, I need to practice Emotional Balance.  Giving myself the space and the permission to feel the emotional effect all of this has on me; to honor the wear and tear it takes on my mind and spirit.  But this “delicate balance” comes into play in feeling my feelings just enough and then letting them go, finding acceptance and peace in them, sharing them with a friend so I am not alone in my pain and fear.  Letting my feelings flow through me, but not get stuck within me. 

Where do you need to create balance in your life today?