Tag Archive | Health

Stuck in What I “Used” to Look Like

i-am

Sometimes I get so stuck in what I used to look like, what I used to be like, that I cannot find any appreciation for who I am today…

Recently, it was very difficult to hear a loved one saying, while looking through old pictures, “That’s what Tamara looked like before she got really sick. Wasn’t she beautiful?” Not that I don’t say these very words myself, a disclaimer so to speak, letting others know I haven’t always been heavy, puffy-faced, pale, fill in your own negative adjective here:_________.
But this time, I wasn’t the one to point out my “different self,” it was my husband. And I know, in my mind, that he was saying this with pride, letting someone who has only known me post-sickness in on what I looked like in a healthier state. In fact, he most likely was just mimicking my own words. But, all my heart heard was, “she used to be beautiful.” Translation: I am no longer beautiful.
And as I am writing this, I realize I perpetuate these stories. Because I don’t want to appear less than (or more than, in regards to my weight- LOL!), so I make excuses. I act as if I already lived my glamorous life. Or even more so, that given just a little more time, I’ll get back to my “old self.” “Just you wait and see!
But that’s not humanly possible. For any of us. Each day we wake up, we are a newer version of ourselves. We move forward, not backwards, in time (or so we hope!).
This attitude doesn’t just pertain to the ill. Comments like these are recycled in the media and in our communities as we disparagingly remark on the aging… a “condition” that occurs in each and every one of us, no matter how hard some try to stop time. We talk wistfully about our youth… our past selves. Or we make side-comments like, “Wow, she has really gotten old.” Or even worse, “What’s up with that grey hair; why doesn’t she color it or something?!” Like aging is something we should fix instead of celebrate.
And let’s face it; the majority of us don’t recognize beauty in ourselves in the moment. It’s only years later as we longingly talk about our youthfulness/healthiness, that we shower ourselves and others with high praise.
Looking at it in this light, who’s to say we’re not missing out on the beauty of our present selves, by keeping our eyes firmly fixed on the past?!
In a stunning sermon by Rev. Tina Simson on the topic of “Fat Ankles and Personal Dragons,” she states, “We do this often… make fun of our own bodies; we talk about them as if they are a distant relative we wished lived somewhere out of town.” She goes on to reflect, “Hidden just out of sight is my flawed self-image that is fed by our culture and its unattainable singular standard of beauty. But also, I know it is fed by me as I critique and doubt my own self, my strength and value… only because by body doesn’t conform.”
So, I realize that this shift in attitude towards those of us who have been “transformed” by illness (and all of us who haven’t discovered the fountain of youth yet) needs to start with me. I need to refuse to keep on feeding that dragon!
First, a note to the friends, family and caregivers of someone who is chronically ill:
It’s okay to reminisce, but try to avoid the words “used to be.” They only denote that we are no longer a whole person as we are… today. Try instead to recognize all the positive traits that you see in us, in the present. For ex, “______ amazes me with her/his strength and resilience.”
For intimate partners: look for all the things you still find beautiful about your mate. Tell your partner, tell others, and most importantly, tell yourself. We all miss things that once were, but by dwelling in the past, you’ll also be missing out on what’s right in front of you. Perhaps we don’t look the same as we did when you first met us, but what are the things that make you pause and feel lucky that we’re still together? Practice falling in love with me all over again.
• This may sound contradictory, but it is okay to also celebrate my beauty and strength of the past. Just, please don’t get stuck in the past. Perhaps marry a reflection on how beautiful I look in this picture from 8 years ago (or the career I used to have), with a complimentary comment about me today.
And for my part:
I will try to stop putting myself down; stop being a bad example of all the ways I don’t want you to act.
I will focus on all the ways I am a success today. I may no longer be participating in a daily, more traditional job. But I don’t sit on my laurels, either. I’ve reinvented myself and found ways to engage in my life, in new and different ways. I am an artist, a writer, an editor, and supportive wife, friend, sister and daughter. I am a survivor.
I will focus on one thing I love about myself, today. It can be an external or internal attribute. I will fall in love with myself again (or perhaps for the first time). Today I looked in the mirror and realized I love my hair… not only do I like my current haircut (hurrah!) and the thickness of my mane, I love what it represents. Just 4 years ago, I had lost 75% of my hair; it was see-through thin, stringy and kinky. But as my body healed from the trauma inflicted upon it, so did my hair. It is a shining symbol of my resilient nature. Give yourself the gift of celebrating the beautiful person you are.
I will engage in activities that lift me up instead of drag me down. Instead of sabotaging my self-image by trying on clothes I know won’t fit me, I will take a yoga class that reminds me of the beauty and strong attributes my body possesses.
These exercises are not only for the benefit of our own self-worth, it is an important shift in societal attitude we are all responsible for. Studies now show that girls’ self-esteem peaks at age 9 (!) and goes down from there and that 80% of children (boys and girls) at 10 years old are afraid of being fat. Let that sink in for a moment.
Together, we can start to re-shape the current mentality of our society. Let’s celebrate the diverse tapestry that makes up our world… all the different colors, sizes, shapes, abilities, ages, and gender orientations. Do we really want a “Stepford Society” after all?

More thoughts on body image:

Mirror Mirror On The Wall

 

 

Open Letter to “Normals:” Please Read

understanding quote

I came across this letter posted on another blog.  It was originally written to help understand what people with Fibromyalgia live with.  But it is pertinent to all the patients who are and family member of the chronically, “invisibly” ill. So I tweaked it a little. And would be forever grateful if you took a moment to read it (and share it)!

Open Letter To Normals,

These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being.  I may have to spend most of my day flat on my back in bed or on the couch in jammies, and I might not seem like great company, but I’m still me stuck inside this body.  I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.”

When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means…  I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever.  Please, don’t say, “Oh, you’re sounding better!”  I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome. Happy ≠Healthy.

The same goes for “looking good.”  If I have the energy to, I like to put on a little make-up and a favorite sweater, maybe even curl my hair.  But looking good does not always equate to feeling good.  That’s why they are called Invisible Illnesses.  Looks can be very deceiving!

It is okay to say, “You sound happy today.”  Or, “I know you may not feel well, but you sure look pretty today!”

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing those five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting,
“sitting up”,
“walking”,
“thinking”,
“being sociable”
and so on  …. it applies to everything.

That’s what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the bathroom.  Please don’t attack me when I’m ill by saying, But you did it before! There is no formula to follow with my disease.  If I have the energy on one day, I will seize the opportunity and engage in the next present activity.  Just as likely (or even more so), I will get up with the intention of following-through on a plan, only to discover I am utterly exhausted after just getting dressed and will have to lie down.

If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute. If this happens please don’t take it personally (I’m just as sad and upset about it as you!).  I still like to be asked, even if I have to bow out.  It’s hard to have a chronic illness and to be excluded from events because you don’t want to make me “feel bad.”

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse.  Chronic Illnesses like Fibromyalgia, Lupus, Arthritis, M.S., Polychondritis (me!) and Abdominal Conditions, may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not helpful and truthfully, incorrect – if I could do it, I would. And please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something.

Chronic, Invisible Illnesses do not forgive.

Please recognize that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends or family members (or friends of friends, for that matter!)  make a suggest at one point or another. At first, I tried them all.  But then I realized I was using up so much energy trying a myriad of treatments and “cures” that I was making myself sicker, not better. If there was something that cured, or even helped, people with Fibro, CFS and all the other “invisible illnesses,” we’d know about it.  This is not a drug-company conspiracy. There is a worldwide network (both on and off the internet) between people with chronic, invisible illnesses, and whenever there is a new, valid treatment option available, we already know about it (mind you, they are far and few between).

We’ve had to find acceptance in the frustrating fact that medicine has not caught up with the growing cases of autoimmune illnesses. The best support you can give us is to accept this fact yourself.  To accept us as we are, not as you would want us to be.

If after reading this, you still want to suggest a cure, then do it, but preferably in writing.  Please don’t expect me to  rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor. Please understand that getting better from an illness like this can be painstakingly slow. (pun intended!)

People with Autoimmune Illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out. Our bodies are literally attacking themselves and there is no pattern that doctors or patients follow.  Each of our cases is unique and varied.

Don’t misunderstand me, I depend on you – people who are not sick – for many things.  But most importantly, I need you to understand me.

Thank you for your compassion,

The Invisibly Ill

Going Just Beyond…

above and beyond

A friend shared an alternative approach to creating New Year’s Resolutions. For the last three years, she has chosen a word that defines what direction she wants to head in the upcoming year.  Instead of listing “specifics” she meditates and visualizes her hopes, wishes and dreams and then categorizes them under an umbrella term; used as her motivational mantra throughout the year. For this year she was vacillating between love and courage, thinking about using both. Then through conversations with others, she realized the recurring word that kept popping up was “connection.” And as she said, “I have found that the word I settle on, most often finds me, not the other way around.”

By focusing on this one small, yet enticingly expansive word, she will walk through the coming 365 days deepening her connections with herself and with others, while staying in tune with the connectivity we can all experience, when we dip into the well of our shared roots.

Just a few days after this conversation, I happened upon an article in our local paper, “My Life, My Words; Three Little Words Have an Impact.”*  In it, Kristine Bruneau writes, “Since 2012, I’ve chosen three words to inspire and guide me along the path of achieving my goals.  At the end of the year, I reflect on how well these words have helped shape my efforts.” Her three words for the coming year are “restore, integrate and teach.” For the year just past, they were “amplify, connect and share.”  They are a trio of interconnected words, which seem to act as stepping stones to growth.  The first, a verb, “takes action”; the second exemplifies how she will integrate the first tenet into her own life; and the third, how she will spread this to the world beyond herself.

Whether one word or several, both approaches are positive and action oriented.  When focused on the solution rather than the problem, you automatically walk in a positive, forward moving direction.

By setting a word, or words of intent, you are practicing the Law of Attraction. 

For the last couple days, I have opened up my mind to receiving a word that describes what I want to attract in the coming year.  I meditated and prayed, and allowed the first word that came into my mind to sit and stew for a while.  It was an unexpected word.  Some may even say an odd word choice.  But the more I let my mind tinker with this idea, the more I realized it encompassed all my hopes, goals and dreams.

My word for 2014? — “BEYOND

I want to reach just beyond my comfort zone into the unknown realm where growth occurs.  I want to re-discover my hidden talents; I want to experience life as it is, and then take it just one step further.  I want to reach beyond myself to help others and the world.

Thinking beyond is going to help me “feel my fear, and do it anyway.”  When I am about to embark on a new or different endeavor, and my fear (of failure, of the unknown, etc.) tries to stop me, I am going to pause, breathe and reach just beyond that fear into the landscape of trust. I am going to take my life just one step further.

I am going to remember this one-word phrase (hmm… oxymoron?!) whenever I am faced with a daily decision, choice or activity; I am going to pause and ask myself, “what would going just beyond look like?” 

The same goes for facing disappointment. Instead of focusing on “why life didn’t turn out the way I had imagined,” I am going to look for the hidden land of opportunity that lies just beyond the field of disappointment.

This word will help define the direction in which I want to head; but I am not concerned with defining what that will look like, what that will feel like, or how I will exactly get there.  That part I’m leaving up to God and the Universe.

And I can’t wait to see what happens!

Some questions you may want to ask yourself when choosing your own Word (or words) Of The Year:

  • In what area of my life do I want to grow?
  • What do I want to learn more about myself?
  • How do I want to more deeply connect with my community? Family? Friends?
  • What am I afraid of?
  • What have I wanted to try that I haven’t yet?
  • Where do I see myself in one year’s time? (in my personal relationships, in my financial stability, in my career, in my state of wellness?)

Then take a deep breath, close your eyes, relax your body, and exhale. What is the first word that comes to mind? Hold onto it, follow it, see where it takes you… and then come back here every once in a while to share your experiences with this annual exercise!

SOURCE: * Rochester Democrat and Chronicle, ROCarts, Section 2C

My 2014 Bucket List is Filled With JOY!

 

bucket list

As you know, I have been mulling over a 2014 Bucket List for the last month.  I want to set my intention for the New Year, so that I expect and accept abundance from the Universe.  But I find myself wary of “asking for too much.”  You know the old fear of “setting my expectations too high only to feel disappointment in the end:” disappointment in the limitations of my physical body, financial resources, time, energy . . .

But I also know from experience that if I don’t open myself up to the possibility of achieving greatness, I will never achieve greatness.  If I don’t trust in my mind, body and spirit to reach beyond the familiar into the stellar, how do I expect the Universe (or God) to?  That by setting my intention and sending it on the wings of my new year’s prayers, I am sending a clear message to God and the Universe that I believe in myself.  That I believe in my hopes and my dreams.

So I decided to attack this personal assignment with gusto! – To choose some goals that my deepest heart desires, reaching just beyond my comfort zone, to where life truly begins.

In the midst of this contemplative meditation, I was gifted resources by my monthly Soul Matters group.  This month is “Living a Life of Character,” the goal being to shift our perspective from a flaw-focused view of “You should be better this year” (IE- fix your imperfections, change those bad habits) to one of building character from a perspective of joy.  I love that!

One of the suggested videos for viewing is a TED talk called “Rethinking Your Bucket List:”

http://www.karmatube.org/videos.php?id=4029

Hospice counselor, Kathleen Taylor, discusses the shift of perspective that happens at the end of life (and can also be mimicked by those undergoing severe/life-changing illness).  That we, as humans, experience three phases in our life on the path to discovering our authentic selves: Youth = fearless, we set our course for life; Middle = we start to question that course; and End = we find answers about that course.

A renowned study discovered that the #1 regret of the dying is: “I wish I had the courage to live life true to myself and not the life that others expected of me.”

Dying (and chronic illness) teaches us that it is never too late to shed what is false and become who we are truly meant to be (authentic self).  She challenges us to think of it in reverse; “that it is never too soon to shed what is false and. . .”

Kathleen suggests we reverse the existential question, “What am I supposed to be doing with my life” into “Who am I being with me life?”  If you are living a life of authentic character, you can let go of the confines of what you should be doing, because doing flows naturally from being.  As Elizabeth Gilbert says, “God shows up in us, as us.”

Unfortunately, this spiritual revelation usually doesn’t occur until the time of death.  When people have no time or strength left to be anything other than they truly are, they become their authentic self. Psychologists have studied and identified a developmental stage of growth that actually occurs at the end of life: people “find a deeper sense of self and finally awaken to the preciousness of time.”

Haven’t you ever encountered an ill person who is completely open and honest; who doesn’t fear changing their mind; who freely apologizes and forgives; who expresses love wherever and whenever; and who finds joy, even in the smallest of moments?

Kathleen Taylor states that as the body slows down, perspective shifts, and the person’s mind, heart and soul actually expands. Neil Sulanger, wrote as his ALS progressed, “As I diminished, I grew.  As I lost so much, I finally started to find myself.”

I have experienced this; when I was teetering on the edge of death.  I’ve just forgotten.  But my own experience combined with this spiritual exercise has reminded me that we all have the capacity to find ourselves.  So, my Bucket List is going to be a combination of the traditional (physical acts) and the existential (character trait).  I am going to focus on who I uniquely am and celebrating that… finding joy in all the ways I can and will contribute to the world.

My list includes ways I will nurture my creativity and curiosity; ways I will expand my knowledge of myself and the world; activities that will change my perspective and challenge my bravery; opportunities to expand my capacity to love and be loved; ways to be a leader and to promote justice; prospects for forgiveness and humility; and many moments for transcendence: to appreciate beauty, foster hope, and increase my spirituality.

I am including my list with the caveat that it is not static; my list is not set in stone.  I am keeping it open and flexible for the abundance of opportunities that are sure to come my way this year, as long as I keep my heart open to receiving them!

Please share your bucket list experiences too!!

MY 2014 BUCKET LIST:

  1. Trip to Arizona (get health evaluation at clinic and visit healing-energy sites)
  2. Get my driver’s license
  3. Take Hubby on surprise getaway (like he has so often done for me!)
  4. Take 2 art courses: one to hone existing skills (advanced drawing or painting) and one in a “new” medium (stained glass or silver work)
  5. Return to Cape Cod for vacation
  6. Rent a speed boat
  7. Hang-glide or para-glide
  8. Bond with my sister-in-laws
  9. Take my nephew on an Auntie-Nephew adventure (as yet to be defined!)
  10. Try Paleo diet and document dietary intake/symptoms
  11. Go deep-woods yurting
  12. Learn Reiki
  13. Go on trip to Lily Dale (spiritualist center) with my girlfriends
  14. Get my art featured in a coffee shop, restaurant or gallery
  15. Engage in volunteer activities with young children
  16. Write blog entries at least 3x/wk. so by end of year have enough for a book, if want
  17. Start a Gratitude Jar filled with moments of joy, hope, beauty and love that I will review at the end of year
  18. 18.  Love widely, listen deeply, encourage others, value self, embrace joy, spread love & light, embody hope, express creatively, laugh with abandon, forgive from a deep-well of kindness, practice compassion, and be the gift as much as I see the gift of this world.

Time for Some Soul Food

abstract_angel-t2

I need to feed my soul.  I have been putting myself on this almost deprivation diet in hopes that my body will rest and heal itself.  But, I think it’s time for some divine intervention!

The first item on my Soul Food List?  MUSIC.  Such a simple solution; healing medicine  and absolutely free.  Yet I have sat here in my silence for far too long.  As the first strands of banjos and snare drums snake their way through my nervous system and into my brain, I can already feel my body relaxing into these soothing sounds. I pause to slightly sway, stimulating my lymphatic system, adding some gentle foot pumps for extra “oomph.”  I’ve slowed my breathing to a measured refrain.

I have been so caught up (again- sigh) in all the ways my body is not working right now; all the spots that are thrumming with pain; all the activities I’ve had to bow out of…  These are the things I know. They are smack dab in the front of my everyday face.  Why focus on that?  I am only amplifying the pain.  And the loss.

And in the middle of this melancholy, I’ve lost sight of the simple things that lift my spirits, that help my mind drift away from the darkness of pain (and fear) into the light of healing (and love!).

angel male and femaleI was graciously invited to an amazing collective meditation at 4:11 EST this past Saturday.  At that exact moment, every planet in our Universe created a perfect star around the Sun.  Harmony.  A portal into divine light.  We began with ten sensual singing bowls, opening up the sleeping channels of higher consciousness that resides in us all.

We let our minds and our bodies float on the soothing, guiding words of our conduit that day, Mimi.  Through her guidance, I was able to experience a pulsing, swirling, expanding circle of light that wove it’s tendrils to all the corners of the Earth.  To the heavens above.  And Mother Earth below.   I was at once one with everything as everything was one with me.  The Divine Goddess Energy became one with the Masculine… no longer male and female… just living, breathing Beings.angel_heart

As the meditation came to a close, we were guided to return to our bodies, to the physical realm.  Suddenly, I was lost in a sea of black.  Complete and utter darkness. Where had all this warm, strong, healing energy and light of just moments before gone?  I could feel it vibrating behind me, almost lying in wait as I lost all guiding light back to Earth.    As I struggled with this dichotomy, a clear voice came to me…

“You will encounter much darkness as you bring this experience back to Earth.  It is easiest to spread light onto others who are already experiencing glimmers of light and love.  Your task is to bring the light into the corners of darkness, to shine your love and energy onto those who struggle with receiving it.”

Whoa.

As soon as I silently accepted this “mission,” shards of light started to splinter around my entire being until there was so much light, angel of lightI became pure energy.

That evening I came home and continued my connection, listening to native music while drawing the abstract light being (angel) who led me on this powerful journey.

Yet, since that night, I have been adrift.  Lost once again in this sea of unremitting pain and worry that this pain will be what I will feel from this moment on.  Selfish thoughts of missing out on the holiday festivities to come; guilt over cancelling and being inconsistent with my commitments to my friends and family; unable to do anything but sit and stare.  Sit and stare.

But, then I suddenly awoke from my afternoon (well let’s just be honest, and say my “all-day”) nap, and was driven to write.  To put on music and reignite that inner fire.  To awaken my Soul Beacon, and let its wavering light start to trickle outwards again.

Truthfully, I have been away from blogging because I have yet to complete my “task” of awarding ten other bloggers with the kind awards that were bestowed upon me.  This activity has overwhelmed me, mind, body and spirit.  And for this I’ve allowed deep roots of shame to grow beneath me; creating an impasse to any spontaneous writing and healing.

This is my Soul Food.

All of you are my Soul Food.

I needed to sit and stare until I remembered that.

The holidays to come aren’t about making the best (one-up-manship) sides for dinner, or hitting the sales that invade my brain with their earworm tactics.  It’s about doing what I can.  And knowing that I am enough.

All my family wants, is me.

And all I want is my family… born into, married into, chosen.

Perhaps, for today, the darkest place that needed light was me.  Now I am ready to start spreading that light to you.

Interesting that this comes to me on the eve of the Festival of Lights.  Happy Hanukkah… we can all rejoice in the miracle of taking a small amount of fuel (energy-light) and spreading it out, until it exponentially grows into days and days and days of lighting the way for others.

May you discover moments to spread your own light and love in the coming days.

angel butterfly

Searching (in vain) For the Magic “Fix-It” Button

affirmation1741At some point, during the path of chronic illness, both with mental and physical conditions, we “sufferers” hope for a magical cure.  At first, it’s the search for the correct diagnosis. “If they can figure out what I have, then they can figure out how to fix it, right?”  The average time from onset of symptoms to diagnosis for a patient with an autoimmune illness is 12 months- 5 years.  That’s a long time to hope!  And that’s just Stage One.  There is temporary relief at this point; a validation for the myriad of seemingly disjointed symptoms that have displayed themselves over the years.  I remember thinking, “finally! Someone is listening.”   But with the complexity of autoimmune disease and chronic conditions comes the challenge of finding the right combination of treatment modalities to match the exact manifestation of the disease in your particular body.

Stage Two begins once the diagnosis is in place and the march of treatments commences; this one doesn’t work, this one mildly helps, oh, found one that works for these symptoms, but not those… There comes a point when many doctors say, “I don’t know what else I can do for you.”  God, this used to be so frustrating!  Until I realized that the medical professionals feel just as frustrated at not being able to fix me as I do at not being able to be fixed.  At this period of time, I picture facing a crossroads between Stage Two and Stage Three.  Many patients turn around at this point, and “re-do” Stage Two, perhaps with second, third, even fourth opinions; with extensive self-research; by participating in research studies; or by going to additional specialists for additional tests.  There are many ways to travel the roads of Stage Two over and over again.  I know I sure did.  I felt I had to exhaustively map out this terrain; perhaps there was a secret curative tonic hidden somewhere?  But, getting your hopes up over and over again about some new treatment or new doctor, only to have them dashed again, is extremely taxing, physically, mentally and spiritually.

Over the last few years I’ve started to move forward, onto Stage Three.  Stage Three is the most challenging stage; many sufferers may never reach this stage.  This is the stage of acceptance that there is no magic cure; no perfect “fix-me” button.  It doesn’t mean I don’t keep my ear to ground, listening for new and innovative treatment options for my conditions.  But I also don’t put all my eggs in one basket anymore.  I know that I will always be in some level of pain.  The truth is that my disease steadily progressed for the 5 years before it was diagnosed and treated, and that damage is irreversible.  This is where acceptance comes in (once again!).  By accepting these facts, I can focus my energies on managing my symptoms (rather than “curing” them), finding different ways to adjust my activities as to not exacerbate these same symptoms and developing coping skills to deal with them on a daily basis.

Last week, I had an endocrine consult for the first time.  I explained to the doctor that I was well aware there is no curative tonic that he will miraculously discover in which to heal me.  I just want to be thorough with my care, and if there is something awry that could explain some of my “excessive” symptoms (like this debilitating fatigue and waterfall sweating armpits!), it would be a relief to treat those concerns alone. He sat back and said, “You have a really grounded, realistic perspective on your disease.  The majority of my patients come in here pleading for me to ‘fix’ them and become very agitated when I can’t.  You have reached an extremely healthy level of acceptance and your attitude will serve you well in managing your disease.”  These words were the healing tonic I craved.  To be heard, to be acknowledged.  He was adamant about the validity of my concerns, but was also honest about the (in)ability of modern medicine to treat them. 

No one is questioning that I have life altering symptoms.  But, there is only so much modern medicine can do to treat them (another solid reason to advocate for studies on women with chronic conditions!). The truth is that if I lived 40 years ago with Relapsing Polychondritis, I would have been diagnosed postmortem.  Without the treatments available that keep me alive today, RP was diagnosed after one’s trachea had collapsed or the patient went suddenly blind or deaf.  Even though I live a life of daily pain, how can I not have gratitude for the fact that I am alive to live it?!

It’s Summer; Time to Pull Out the Sneakers! What?!

feet-on-beachSo, it’s often said that “Summer is Sandal Season!”  Well, I got the great news that for me, this “Summer is Sneaker Season!” Yeah.  The day before I left for vacation, I had an urgent appointment to see a podiatrist.  I had been experiencing pain in my left heel, at times, so severe that I couldn’t put any weight on it. Obviously concerned, I was grateful to get a last minute office visit. After I heard the diagnosis and treatment plan, let’s just say, I was less than enthusiastic.

It’s hard when you live a life of “restrictions” to find out that there is but one more area of my life I now need to adjust to meet the “needs” of my chronic illness. When the weather warms, the first thing I anticipate is pulling out my beloved sandals and all the colorful nail polishes that come with the season! It’s truly one of my last indulgences.  There are so many modifications I have to make to my daily living, and showing off my sexy feet (the one area that doesn’t puff up with Prednisone weight!) is a luxury I just don’t feel like giving up!

I know I am acting like a toddler throwing a tantrum over imposed rules.  But, I don’t care!  I take so many things with a smile on my face, my chin held high, my thoughts focused on the positive rather than the negative.  I didn’t fight the podiatrist when he delivered the news that I had torn my posterior tibilial tendon and told I needed to immobilize my foot for 6 weeks or I was at risk of a ruptured tendon (all said with a wagging finger. Tsk. Tsk.).  He proceeded to tell me that the typical treatment would be a “boot” (those big, clunky walking casts that go from toe to knee).  Thankfully (?) he said my back would hate him for this (I have had two lower discectomies for ruptured discs) so it eliminated this option.  The only alternative is to wear solid, athletic sneakers at all times. So I tried, I really tried, to look at the positive; sneakers were a heck of a lot better than a boot, right?  But, at the same time, all I could hear was this mocking voice inside my head, “Well, won’t you look hot on the beach with your bathing suit and sneakers!”

I have been the “good patient” and tried to follow the treatment plan (which also includes daily exercises, massage and ice) to the best of my ability.  It’s been well over a week now and even on vacation, I wore my sneakers most of the time.  But I have always hated having my feet confined.  So when I need to “free my tootsies,” I don the prescribed orthopedic flip flops, a much more promising option. Alas, I was told they were only for getting out of bed; they would be my “next summer’s shoe” (more finger wagging. Tsk. Tsk. Tsk.).

But, here’s the kicker.  My body does not like change!! Any change.  A change of footwear has been a huge trigger for a cascade of symptoms.  Following orders, I shove my feet into the only sneakers I own, heavy hiker sneaks, and my body rebels.  For me, the weight of just a couple extra pounds dragging me down is enough to trigger a flare. More parts of my feet than I knew existed hurt, my feet and ankles keep swelling into nondescript shapes, and it has thrown my whole lower body out of whack; knees, hips, back…

And the number one feature of my autoimmune disease, Polychondritis, is the attack of connective tissue.  Hazzah!  Tendons are connective tissue.  Just like this disease has marched its deadly forces through every inch of my body, it has now reached my feet!  Also, the tendon I injured is a whopper.  It runs from just under my heel, around the inside of my ankle, up to my Achilles.  And by tearing this, it has inflamed my plantar fasciitis (ligament) as well as my Achilles Tendon.  I certainly don’t want to risk rupturing any of those (I keep envisioning athletes suddenly crumpling to the ground. Ugh.). This one tiny, torn tendon has caused a ripple effect, inflaming all the tendons and ligaments in my feet.

Today I am struggling mostly with finding a happy medium.   A way to heal my heel (hardy-har. har.) while also soothing the rest of my joints and tissue.  Right now, I am in way worse pain than when I walked into the doctor’s office.  And that’s not a good solution for any of the things that ail me.

But, just being able to “say” these feelings out loud is a relief.  I have to trust that the rest will come with time and patience.

In and of itself, I realize that communicating my disappointments, my worries, my fears, is healing therapy.  Because holding all that in behind the mask of a smile only adds stress to an already stressful situation.  What are you holding in today that could be shared? Whatever trials you are facing, free yourself from the cage of stoicism.   I guarantee you will find relief in the comfort of shared pain… we don’t have to face life’s ups and downs alone!