Archive | July 2013

Withdrawal is Necessary

A startled fawn Captured at dawn Grazing upon our city lawn

A startled fawn
Captured at dawn
Grazing upon our city lawn

In the quiet,

        The messages come

Like shy woodland creatures

        Just waiting to emerge from

                The shadows of their withdrawal

 

Insight and courage

        Dance wind on the mind

Hidden hopes and dreams

        Of the deeper kind

                Find safety in your open arms

 

Together you celebrate

        On the lush, vibrant banks

It’s the River of Grace

        That you should truly thank

                For delivering these gifts of God

 

But without the space

        And quiet… and solitude

You would not have heard

        These shifts in moods

                That herald in your own creativity

 

Nurture the fox

That rest and hides

In the deep, hidden

Crevices of your mind

Just waiting to emerge

To coalesce and converge

        From the shadows of your withdrawal

  • Quiet is necessary… withdrawal is necessary
  • It is so easy to fill our day with distractions.  Anything to keep us from dwelling on our physical pain, mental pain, to-do lists, “if-only lists,” thoughts of disappointment or loss, and all the other uncomfortable places our mind and body will go.  Right?
  • I am discovering there is a difference between “being alone” and spending time “alone with ourselves”… in silence.
  • I am often “alone” but I will have some external distraction, whether it is music, the T.V., a book… anything to keep my mind “busy!”
  • I have now started to incorporate the practice of silent periods in to my day.
  • It doesn’t have to be a long period of time. 5-10 minutes a day is plenty.
  • Think of this as a gift to yourself.
  • Quiet time to listen.  To hear what your heart’s desires are. To sit with feelings of grief of loss.  To feel your feelings, whatever they are. To follow your intuitive voice or the voice of God.
  • This time of withdrawal can be a period of contemplation, meditation, prayer.
  • Creativity comes when we gives ourselves pause to hear inspiration.
  • This silent time may feel uncomfortable at first.   That’s okay.  It takes time for a our minds to settle into this space.
  • It helps me to focus on something: my breathing (4 counts in, 4 counts out), on tightening and relaxing each muscle in my body until I am at peace, or on a one word mantra:
  • This morning I used the word “center.” At some point my mind changed it to “believe. center, believe. center” on my in breath and out breath. A serenity came over me and I felt completely relaxed. I also intuitively knew I was right where I am supposed to be at this moment in time. I “believed” without question. I was quiet long enough for my soul to come to its own conclusion.
  • So I challenge you to turn off all external noise, to quiet yourself and let your mind float wherever it may.  Then come back here and let me know what you discovered!

(“Shadows of Withdrawal” poem written by me, Tamara P.)

 

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Down The Rabbit Hole . . .

down the rabbit hole

Yesterday was my birthday.  My mind naturally traveled to the past while reflecting on the present.  Where have I been?  How did I “get” to this place in time? What experiences have shaped the woman I am today?  At certain times during the day, I found my thoughts tinkering with my history; pulling the dusty boxes of memories off the shelf and peering inside them.  Some were filled with joyful adventures, parts of my life that feel like an exotic dream (I did that?  I was capable of that feat?!)  But, there are, too, those memory boxes filled with reminders of the intense medical experiences I have had over the last 7 years in particular.  7 years!! No wonder, at times, I feel like I fell down the Rabbit Hole only to emerge, like a science fiction character, in some distant, unknown future land, future time.

Cue “flashback music” . . .

I was 34 years young, struggling with increasing pain and rheumatologic symptoms, fighting for years to get a correct diagnosis.  I finally received same; I was told I had a rare autoimmune condition called Relapsing Polychondritis.  Upon research, I discovered a mere 600 other souls had this same disease as me, and that over half of them had been treated by one particular doctor, David E. Trentham. Behold!  He was a scant 6 hours away in my old stomping ground, Boston.  We were excited to both discover this resource and to also have it be available to us in the land we called home for many years.  Road-trip!!

I was quickly accepted into his office and appointments were lined up, plans made, suitcases pack.  We hit the road with hope for my medical future, the first time in a long while we felt this way.  Of course, my array of symptoms being as varied as they were, I was also experiencing some abdominal discomfort that was unusual at the time.  It was waxing and waning, causing sharp, stabbing sensations along with bloating.  Two days before leaving for Boston, the pain was becoming more unbearable, and, hence, more concerning.  I left a message with my primary care doctor about my concerns and when he called me at the end of day, he was brief and extremely abrupt.  He started with a quick over the phone diagnosis: “Sounds like you have a UTI.”  I explained that this felt nothing like a UTI, and he interrupted with the following extremely unhelpful (and unethical) statement, “Well, I don’t know what I’m supposed to do for you.  I’m leaving town in half an hour for a conference.”   Again I tried to get my concerns across, and discovered he had hung up on me after declaring his scheduling needs!

The following morning, the symptoms had increased and I called my primary’s office back to get an urgent care appointment.  Upon seeing another doctor in the practice, he had noted in my chart that my regular PCP thought I may have a UTI.  He commenced with a pee test and instructions to call back; visit over. I sat there with my shirt pulled up, saying, “look at how distended my stomach is!” He never examined me and advised me that if I continued having concerns, he was now passing me off to my GYN.

Well, I certainly did “still have concerns!”  Soon as I got home, I called my GYN.  Now, I also have a history of ruptured and invasive ovarian cysts, so I thought this could be a definitive cause of my symptoms. I spoke with my GYN over the phone, and he too acted like an alien had taken over his mind.  He kept saying, “Sounds like you’re constipated!”  “Nope,” I replied, “I’m pooping regularly.”  “Well, I can’t get you in to see you. So drink lots of water and take a brisk walk!”  I found out later this “brisk walk,” literally could have killed me.  What was wrong with the world today?!

Over the next several days, we traveled to Boston where I met with Dr. Trentham. I only briefly mentioned my abdominal symptoms because I had been told they were “no big deal” and wanted to maximize my time with him discussing the Polychondritis.  But, some funny things were happening… he had ordered a spiral C/T to diagnose cartilage damage in my trachea, and they had discovered “free air” between my lungs. Not a typical finding! As well, my “tummy crud” was getting worse and more frequent.  Dr. Trentham arranged for us to see a pulmonary specialist in Boston in one week’s time. We returned home to Rochester in the meantime.

During the next several days, I called my GYN again with the C/T findings, etc. (after a scheduled appointment with NP in that office was cancelled… by them!) and requested an ultrasound.  They said there was no time before I returned to Boston. So, I took matters in my own hands and scheduled one with no problem. On this imaging they discovered large amount of free air in my abdomen.  Another red flag, doctors!

Now, here comes the Rabbit Hole…

By the time we got back to Boston, 10 days after my symptoms had started, my stomach was 7+ inches distended (!) and I would be gently (not briskly!) walking when I would double over in pain and almost pass out.   I remember lying on the hotel floor imagining myself pulling toxic goo out of my stomach.  I took my hands and drew all this crud to my belly button and out; I could picture green globs trapped in bubbles, heavily floating away, which I would then shoot with my imaginary Annie Oakley gun into oblivion. I truly believe this intuitive visual exercise prolonged my life!

Friday morning arrived, the day of my pulmonary visit, and I was now hallucinating.  The pink and green swirled hotel carpeting would take life and dance before my eyes.  Lightning bolts of pain flashed across my belly. But, for some God forsaken reason, I kept trucking along, even going as far as completing my pulmonary function test in this “altered state!” It was two pulmonary fellows who would in the end save my life.  They came in to exam me, and upon reading my C/T scan and physically examining me (what a novel idea!), they immediately told me I had to rush to the ED; this free air was not from my lungs, it was coming from my abdomen. Not good. Not good at all . . .

I then found myself all alone in the ED department; my husband off to check into our hotel.  By this point, it is like I had eaten a pound of psychotropic mushrooms; faces are melting, walls are breathing.  I am living in the middle of a Dali painting.  I can tell I am going to pass out any moment if I don’t get help, so I start the long journey from my seat to the desk. I am walking like Gumby, rubbery legs and arms struggling to remember the simple act of taking steps. With each exaggerated stride, people’s faces were like cartoon characters, enlarged heads and distorted features leaning into my face and then away. It was like looking through a fish eye lens.

Well, I made it to that desk, and they immediately placed me a on a gurney.  By the time my husband returned, I had learned I was a “very, very sick young lady who was extremely lucky to be alive.”

My colon had ruptured (perforated) and I had been septic for 10 days!  Basically, a medical implausibility. I learned that this was like a person walking around with a ruptured appendix for over a week.  But, being my colon, which is the last part of your bowel, I was filled with feces and infection (hence the infamous “green goo!”). The doctors felt the only thing that had kept me alive was the fact that I was on 80mg. of Prednisone daily at the time for my disease (about 16x a regular dose!).

Then, we received the most harrowing news I had ever heard (up until that point) . . .

It was around midnight, I was on deck for the next available OR room.  The resident came in and asked Dave and I if “we were prepared?”  We replied that, yes, we’re all “prepared” for surgery.  And she shook her head.  “No, I mean, have you said your goodbyes?”  We sputtered, “What?”  “You have to know, this surgery is extremely risky and your wife is incredibly sick.  She is dying and there is only a 10% chance she will make it through the night.”  10%!  But, we did not say good bye.  We said “I love you.”   We said, “I’ll see you in just a short bit.”  We believed.  We had hope.

This was only the beginning of a 5 year saga, one that will come more and more into the light as I write my blog, I’m sure.  But, as I am reflecting on the anniversary of my first birth, I also remember the times I’ve been reborn since.  I know there are angels watching over me; there are so many ways I was “saved” that fateful night.  But, I think the strongest medicine, was already inside me.  I refused to take the doctor’s (inept) assessments at face value without advocating for my own care.  I believed I was ridding myself of toxins lying on that hotel floor.  And I had unwavering faith that I was going to make it through that night.

So, I may have “lost” half a decade or more to this one crazy chain of events.  But, I’m alive today to tell my tale.  I’m alive today to pull myself out of that Rabbit Hole and into the Light of Life!

Mirror, Mirror On The Wall…

...who's the fairest of them all?

…who’s the fairest of them all?

There are two people in the mirror looking back at me.  I see the me of years ago… before the surgeries, before the Predinose weight, before this illness ravaged my once beautiful body.  I see my once graceful curves, full breasts, sinewy muscles.  I see smooth, unblemished skin.   I see a face graced with high cheek bones, and my crowning glory, a mane of hair that honors my Leo birthright.

But then I glance away, only for a second.  But a second is all it takes. And the veil is lifted.  Now looking back at me is this Rubanesque form, filled with mars and scars. An abdomen curved gently into my once proud hip bones is now a patch work of put together pieces. My belly button is all but lost amongst the vertical scar that tracks its path from my sternum to my pubis. There are angry slash marks running across my belly, scars and “striations” chasing each other, competing to see who will get to the other side first.  My hip bones are now buried beneath a belly that no longer has any abdominal muscles (there are only so many times you can cut through connective tissue before it no longer knits together).  My face reflects the “moon-ism” of long term Predinose (*steroid) use; the oval shaped now rounded and puffed out, making my eyes and mouth appear small and timid.  And my once straight, full hair has agreed to join the revolt, each day becoming curlier and curlier.  Which would be a nice change, right? Except that it is only curly in the certain areas on my head!?!

So which woman is the “real” me?  I walk proudly like I am still the woman that was once told should be a model (and, of course, never believed at the time! Sigh.).   But then I see myself in pictures and I wonder in shock, “Who is that bloated version of me?  Must be the angle right? Or the lighting?  Something?!”  And all I want to do is cry.  Weep for the person I was and have lost.  For all the things illness has stolen from me: years lost; weight gained; my dignity, my self-esteem, my sexuality.  My identity.

But, wait.  That would be saying my entire identity was wrapped up in my external looks.  And it never was; that’s why I also didn’t see myself as “model material.”  I walk proudly because of my internal strength and light.  Which leaves me even more confused than before; I still don’t feel like my insides match my outsides.

It’s hard not to let invasive, ill-thought out comments from well-meaning friends become ear worms.  Wriggling themselves into my brain only to be repeated over and over again.  Statements such as: “Oh, wait until you see her when she’s all better, loses the weight and is back to her ‘old self.’”  And, “Gosh, you were so beautiful.”  Or, “You don’t ‘carry yourself’ like an overweight person.”  What the heck is that one supposed to mean?

And, perhaps I don’t carry myself like “an overweight person.”  And I’m glad.  Because my first instinct when I rapidly put on all this weight (*) was to bury it under loose fitting clothes.  But that approach only made me feel worse.  At least when I put on a flowy maxi skirt and colorful top, I feel more like my true self. I am no longer trying to hide myself anymore.  I try to counteract all the negative feelings.  I use positive self-talk. I remind myself that the same scars that have patched me into pieces saved my life!  I was once proud of that vertical mid-line scar, calling it my life line and the rest, a road map to Survival.  I’ve started using a body-image technique post shower that a friend shared with me.  First off, I stay naked as long as I can and then I apply lotion lovingly to each part of my body, thanking it while I do so (“Thank you, feet, for supporting me; I love your beautifully painted toes!,” etc.).  I put healthy food into my system and ride my stationary bike and/or walk everyday (unless bedridden).

All these approaches are positive and important.  But, while writing this painful post, I’ve realized that this is not the most important step in my self-image recovery:

I need to focus on my insides.  To recognize that I was out last night and was approached by half a dozen friends who interrupted my conversations, just because they didn’t want to leave without giving me a hug.  These women genuinely told me how beautiful I looked.  And all of that was not in response to weight, or smoothness of skin; it was in response to my inner light radiating my outer self.  The same light that always made me appear “beautiful.”  People respond to me not for what I look like, but for whom I am.  And if I let the negative thoughts override all of this, I will close myself off like a clam shell, turning inward in a protective pose.  When one is on the defensive, they are no longer approachable.  And that has always been one of my greatest gifts.  I refuse to let this illness take that away from me!  I will not give it that power. 

I am a beautiful woman. An Amazonian Goddess, whose perseverance and tenacity have given her the fortitude to win many a battle.  I radiate with the stunning light of my Soul Beacon that transmutes Hope and Positive Energy to others.  People are attracted to me for who I am. And, if I really want to think about it, illness has only strengthened these qualities in me, certainly not stealing any of them away!  It’s okay for me to mourn the pieces that have been stolen from me and my life.  But after mourning, comes a Celebration of Life… a celebration of the life I live today, of the woman I choose to be.

 

*MORE INFORMATION ON THE SIDE-EFFECTS OF LONG TERM PREDNISONE (STEROID) USE:

Outlines all the (ill) effects of long term or high dose usage (weight, hair, striations- the whole gamut!).  For me? Went right down the list. Check, check… and, check!

http://www.hopkinsvasculitis.org/vasculitis-treatments/prednisone/

Summary:

http://ibdcrohns.about.com/od/prednisone/f/predweight.htm

Discussion board with testimonials on individual’s experience with Prednisone induced weight gain:

http://arthritis.about.com/u/ua/prednisone/prednisone_and_weight_gain.htm

The Miracle of Music ~ To Heal Mind, Body, & Spirit

plato quote

Music is curative.  It soothes the soul and quiets the mind.  It awakens the senses and reminds you that you are alive.  It makes the heart sing and the spirit swell.  It can lull you to sleep or jolt you awake. It can be enjoyed alone or with others. It is free.

It is an elixir that has been known to man for millennia… yet we so often forget to utilize this healing tonic!

As soon as I turn on music, I can feel every fiber of my being relax into living.  It does not discriminate me because I am disabled; it reaches out its fingers of cohesive notes to massage all of my senses.  It stirs pleasant memories from the past and teases me with the prospect of creating even more memories in my future.  And, that’s it: to me, music is filled with possibilities.

I’ve recently been reading a powerful book by Paulo Coehlo (author of The Alchemist) with deep purpose.  This book is the chronicle of a woman who lived life fully, and freely.  Unfortunately she died before reaching 30, but one can tell by the interviews in this book that she left an indelible mark on the people she met.  Most of her passion was in experiencing life sensually.  And I don’t mean sexually, I mean by engaging all of her senses, and encouraging others to do the same.  One portal to the divine that she patches into over and over is music, as well as the expression of music, dance.  At first, I felt sad reading her account.  For I was a trained dancer growing up and then danced my way through life until my body could no longer keep up.  If there was music to be heard, my body couldn’t help but physically respond!  I started to feel less than and got stuck in the “woe-is-me’s.” Then I reached an acceptance point.  I can still move my body (maybe not as fluidly as before, but movement is movement!).  And I certainly can remind myself to incorporate music into my daily life.  It has once again, become one of my most important therapies!

Here are the passages that stirred my soul into action:  an excerpt from a conversation between Pavel Podbielski and Athena, the divine female focus of the novel, The Witch of Portobello:

 “Everything moves, and everything moves to a rhythm.  And everything that moves to a rhythm creates a sound.  At this moment, the same thing is happening here and everywhere else in the world.  Our ancestors noticed… [that] things moved and made noise.  The first humans may have been frightened by this at first, but that fear was soon replaced by a sense of awe: they understood that this was the way in which some Superior Being was communicating with them.  In hope of reciprocating that communication, they started imitating the sounds and movements around them – and thus dance and music were born.”

“Yes, when I dance, I’m a free woman, or rather, a free spirit who can travel through the universe, contemplate the present, divine the future, and be transformed into pure energy.”

I find that quote supremely beautiful.  It shows how music has the power to get us in touch with the root of our being, that which is entirely Pure Energy.  We become the people we are meant to be.  Music touches me in such a visceral way, that it’s hard to put in to words.  I read the above passages during the days I was in the throes of my neuropathy situation (see previous posts!).  And I couldn’t imagine how to even begin utilizing the curative force of music, let alone dance.  But, I was both desperate, and open. I had gotten on my stationary bike to gently move and free up my stiffened joints.  I had music on softly and was reading when I realized I needed to just close my eyes and let the music take me to wherever I was meant to go.  I tried to free my mind of thoughts and just listen to the purity of sound, to feel the music resonate in my body. A clear visualization of a chrysalis lying on stones came to me. As I leaned in to inspect, an exotic butterfly emerged, stretching her wings.  She floated up into the air and silently begged me to follow her. With no mind, I discovered that I was gracefully flapping my arms like the wings of the butterfly; each beat a mirror of the music’s tempo.  My journey of flight took me deep within, to the base of my spine, to my root chakra.  I intuitively knew I was completely out of balance, and the power to restore harmony to my body was in my hands and mind alone.  That butterfly, floating on the wings of music, helped me to shift and align each chakra, travelling up and down the spine that just minutes before was in the midst of a spasmodic episode.  But I no longer felt any pain; my body was floating, light as air through the universe, both in the present and in all the time before and yet to come. My journey ended in the middle of my forehead, at my third eye. I visualized what I can only describe as the “Superior Being,” more beautiful and radiant than anything I had ever seen.  We became one, and in that moment, my journey was done.  I opened my eyes, and looked wearily around. My pain was not gone forever, but for the next hour my third eye tingled with life and energy and I felt at one, at peace.

And since this experience, I have been consciously placing music front and center in my days.  I allow my body to move at is able, just like I did when I imitated the graceful path of the butterfly.  It may not be dance in the “traditional” sense, but it is my body harmonizing with sound, which is the purest from of dance.  No matter who you are, with your unique combination of abilities and dis-abilities, you can harness the Miracle of Music!!

~ MUSIC HAS THE POWER TO CREATE “ECSTASY”:  WHICH ORIGINATES FROM THE GREEK AND MEANS, “TO STAND OUTSIDE YOURSELF.”  AND THAT’S THE MIRACLE OF MUSIC TO ME… TO STAND OUTSIDE MY AILING BODY, MY ACHY LIMBS, MY ANXIOUS MIND, MY POST TRAUMATIC THOUGHTS… TO EXPERIENCE FREEDOM, IF ONLY FOR A SONG ~

Curious about the scientific evidence re: the curative powers of music?  Look for more on this topic in my next post . . .

Finding God in a Piece of Beach Glass

woman mediating

I question the presence of God in my life; but it is only because I have shut myself off from accepting his/her messages.  When I am in pain, it’s hard to see clearly through the haze of it!  But after sharing my difficult journey yesterday, people didn’t shy away from my mini-meltdown.  They did the opposite; they embraced me.

And, through it all, I was reminded that I am not going through this alone.  The love of God is by my side always… I just have to look.  So, I started a mission to document “all the ways God presents in my life.”  For me, my God wears skin.  Meaning, God’s loving, healing energy works through the people in my life; they are the messengers.  Many times my God is not a physical person, it is a warm, pulsating, swirling vortex of bright light… a warm embrace, a loving hand, an encouraging nurturer, an energy force that heals me and holds me up.

Recently a friend commented that I am lucky because whatever I wish for, the Universe provides for me.  And my initial reaction was, What? Are you kidding me? Really?!?  All the (perceived) negative experiences in my life flashed before my eyes: illness and pain, loss, financial hardships, inability to have children, never owning a home (or a car younger than 10 years old!), no longer being able to work, the list could go on and on.  But, then a switch went off, and my eyes opened to all the glorious things that have happened in my life; an extremely loving, and supporting partner-husband (of 21 years!); travel; art; friends; my amazing kitty; my nephew; sobriety; empathy for others; an eye for the beauty in life; acceptance; this list, too, goes on and on!  And this is the one I choose to focus on today.  Another friend reminded me that this is my greatest gift… that I do not dwell in the negative, in the things I cannot change.  I look to things that are positive in my life; I change my attitude to one of gratitude.

So, today I’m sharing some beautiful Moments of Grace that have happened in the last few days…

live it license plateShining Example #1: Friday night I went with three close girlfriends to a monthly women’s meeting.  At the meeting (after noshing and chatting!) we sat round robin style to discuss a topic.  Tonight’s was “turning our will and our lives over to the care of God, as we understand God.”  I am not alone with my struggle with this.  Finding this implicit trust in a higher power; knowing and not question that my life is going in the direction it is meant to go.  The conversation was deep and enlightening.  On the way home, the discussion continued.  We were talking about that “intuitive voice” inside each one of us. I was sharing that when I listen to the “one true voice,” I am always guided in the right direction. It’s when I question it, second guess it, or ignore it outright, that I struggle and stumble and fall.  I’ve just finished when my friend says, “Oh, my gosh! Look at the car in front of us!”  Three pairs of eyes looked forward and saw a license plate with just three letters: “G-U-T.”  And I couldn’t help but laugh with happiness… we were following our gut!!

Shining Example #2:  One of the activities I enjoy engaging in is jewelry making.  The meditative task of stringing complimentary natural gemstones is extremely healing.  Recently, I’ve discovered great joy in creating jewelry from our found treasures of polished lake stones and beach glass.  An added bonus is that my husband is my partner in this venture; he helps me search and gather, he tumbles and polishes, he drills.  Well, I wasn’t the only one enamored with this new venture, for all my creations sold out in one week-end sale.  Which leads me to the now… I wanted to make more beach glass jewelry but had depleted my collection, gathered over dozens of years! But, I wanted more now! After appealing to friends to see if they had any caches they were willing to part with (or trade), my husband and I decided to go to the local beach on Lake Ontario just to check.  My expectations weren’t high; I hoped to find a couple useable pieces.  So I decided to focus my energies Glass Beach site2closeupon the trip to the beach with my husband on a perfectly sunny 80° day and not on the collecting of glass (lowering my expectations…).  Well, as soon as eased off and embraced the now, the Universe listened.  I stood in a sun salutation pose of gratitude and let the waves bring the pieces to me, rather than chasing them down.  We left that day, after a one hour hunt, with almost 100 pieces of sparkling sea glass in shades in frosted white, green, amber, and even a few coveted blues!

Shining Example #3:  Is all of you!  I opened up my soul and showed the world the raw off me yesterday.  Not only did I receive virtual *gentle* hugs (talk about “getting it!”); I got validation (I am not alone!) and support.  I received an unexpected beautiful hands-make-a-heartcall from my sister-in-law (“I am not going to attempt to understand.  But I just wanted to call and say, ‘I love you!’”=simply perfect).   And I was given two clear messages that were exactly what I needed in the moment (without me even knowing it).  The first was from a friend who said: “I will psychically take it away by imagining you floating in the cosmos, on a soft cloud with a slight breeze. The faint smell of flowers, and music.”  This has become my new visualization tool for when I need to “travel outside my physical wall of pain.”  And secondly, a friend whom I deeply admire; she travels through her own physical challenges with such strength and grace, said: “one minute at a time. Breath in God, blow out all the yuck.”  This is now the second half of my meditations; the yin to my visual yang.  I love, “breath out the yuck.”  Perfect.

Thank you for shining your Soul Beacon on me so that I may shine my light back to others.

After all that, how can I question that God is working in my life?   I just need to remember to pray each day so that I am an empty vessel waiting to be filled up by the gifts of the Universe.  And not to place any predictive expectations on what these gifts will look like.

“God, please help me to keep my mind clear, my eyes open, my ears hearing, and my heart feeling

so that I can embrace all the ways you are working in my life.”

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!).

The Autoimmune Puzzle PART 1

puzzle man

“What does “autoimmune” mean?” “What’s the name of your disease again?” “Wait, could you slow down so I can write that down?”  “My friend has (insert any number of conditions), is that like yours?”

Those of us with chronic conditions can all relate to receiving these inquiries, from close family to just met strangers, almost daily.  And now that I live in the vortex of the autoimmune cyclone, I forget that the average citizen doesn’t know what I mean when I toss around random medical terms, speaking the unique dialect of the “autoimmunie”.

Can you name one autoimmune disease?

If not, you are not alone!  In a recent Roper poll, less than 6% of Americans surveyed could identify an autoimmune disease. It’s time to change that statistic!

So, today, I am going to begin a series of posts to Untangle the Mysteries of the AUTOIMMUNE Puzzzle:

When people hear the term “autoimmune”, they interpret it in all kinds of ways… from HIV, to AIDS, to cancer, to the flu… anything they relate with “immunity.”  My typical layman’s definition is: “There are hundreds of autoimmune conditions.  The most commonly known ones are M.S. and Lupus.   Basically, it’s when the body turns on itself and starts attacking a variety of systems and organs.  It can attack the bones and cartilage, the skin, the nervous system, internal organs; basically anything it perceives as an ‘enemy.’”

Then I usually experience dumbfounded silence or a new barrage of questions: “What causes it?” “How did you get it?”  “Can you get better or be healed?”

I remember all the questions I had when I was first diagnosed.  Now its second nature, but it certainly didn’t start out that way!  So, today, I thought I’d go a little deeper to uncover the facts about autoimmunity.  I truly believe that knowledge is power… for the person suffering from these conditions, for their loved ones and caregivers, for our friends, and for the community at large.  If we are ever to get the funding needed to answer those questions above, we need to first educate people on the serious and wide-spread effect these conditions are having on the world!

So… let’s begin at the beginning:  What is AUTOIMMUNE?au·to·im·mune  /ˌôtōəˈmyo͞on/  Adjective:

Of or relating to disease caused by antibodies produced against substances naturally present in the body. (from dictionary.com)

“What is Autoimmunity?”

One of the functions of the immune system is to protect the body by responding to invading microorganisms, such as viruses or bacteria and producing antibodies or sensitized lymphocytes (types of white blood cells, important to immunity). This process can be beneficial when the body attacks a foreign substance such as a virus, bacteria or cancer cells.  But it can become destructive when the body misperceives healthy cells and tissue as the enemy, creating antigens against these healthy cells and organs.

“What happens when your body comes ‘under attack’?”

Under normal conditions, an immune response cannot be triggered against the cells of one’s own body. In certain cases, however, immune cells make a mistake and attack the very cells that they are meant to protect. This can lead to a variety of autoimmune diseases. They encompass a broad category of related diseases in which the person’s immune system attacks his or her own tissue.  Autoimmunity includes diseases of the nervous, gastrointestinal and endocrine systems as well as of the skin, other connective tissues and blood vessels (basically anywhere in the human body!).  Autoimmune disease fall under two categories: Systemic (wide-spread, affecting multiple systems; in conditions such as Lupus and Rheumatoid Arthritis) or Organ Specific (in conditions such as Multiple Sclerosis, affecting the nervous system and Grave’s Disease, affecting the thyroid).

“I’m not sure I understand what connective tissue is?”

Connective tissue is the tissue which binds (holds together) all body “parts” (ex: joints and bones) and organs.  Connective tissue includes: cartilage, ligaments, and tendons.

“What causes Autoimmunity?”

The immune system normally can distinguish “self” from “non-self.”  Autoimmunity occurs naturally in everyone to some degree; and in most people, it does not result in diseases. We need natural autoimmunity to survive; to fight foreign substances in our bodies.  The problem arises when the body perceives natural occurring substances (cells, tissues, organs) as foreign.  Autoimmune diseases occur when there is some interruption of the usual control process or when there is an alteration in some body tissue so that it is no longer recognized as “self” and is thus attacked.

“What do you mean, ‘under attack’?!”

 Autoimmune diseases arise from an overactive immune response of the body against substances and tissues naturally present in the body.  In other words, the body attacks its own cells.  It starts to perceive everything as the “enemy.” (Imagine your immune cells chomping away through your cartilage or bones… I picture a horror version of the game PacMan!)

“Is the process/progression of Autoimmune Disease always the same?”

No, there are many variations on the way a body can attack itself:

  • Some diseases are relapsing and remitting (flares of symptoms come and go) and some are progressive (symptoms always present- my disease progresses in this way)
  • Some diseases cause a slow progression of the destruction of a specific type of cell or tissue
  • While other diseases stimulate an organ into excessive growth
  • And still other diseases interfere with the function of an organ or bodily system

Now you’re starting to see the many puzzle pieces in the Enigma of Autoimmunity!

 

End of PART ONE

Be on the look-out for further answers to questions such as:

“Who is affected by autoimmune disease?”

“What are the effects of a prolonged autoimmune attack?”

“What are treatment options?”

“What conditions are considered ‘autoimmune’?”

“What kind of medical professionals treat these conditions?”

“What the heck is Relapsing Polychondritis?”

“What does it mean to have a ‘rare disease?’”

And the BIG ONE…

“What causes the body to turn on itself?!”  (This one’s a gripping tale so you’ll want to stay tuned for more!)

Thirsty for more information or knowledge right now?

Here are top sources I recommend:

American Autoimmune Related Diseases Association: https://www.aarda.org/

American College of Rheumatology:  http://www.rheumatology.org/

National Institute of Arthritis & Musculoskeletal & Skin Diseases: http://niams.nih.gov/

Polychondritis Educational Society, Ltd.: http://polychondritis.org/

***DISCLAIMER: The above information is compiled from my own personal research.  It is meant purely as a starting point.  I encourage you to contact a medical professional with any questions regarding Autoimmunity.  And, certainly if you think you may have one of these conditions or need information about a current diagnosis, contact a physician as soon as possible to receive information re: your conditions, treatment options, etc. ***