Tag Archive | Support

Stop Body Shaming!

all different bodies 2

“Oh, No! This is the section for Fat People.”
Yesterday, at a large department store sale, I was perusing the racks in Juniors Plus when a mother and daughter entered the area. At first, I hear Mom say, “Check the sale rack first; you’ll be able to get more items that way.” Smart. But, then directly on the heels of this advice, I hear a comment, spoken loudly and dripping with disdain, “Oh, not here! This isn’t your area. These are for Fat People.” Ending with a barely concealed “Ewwwww…”

Equally embarrassed and curious, I risked a glance over my shoulder to see the source. I discover that, yes, the teen in question is slender and fit. But, the mother is not. In fact, she looks like she shops for size 16, the same as me. As found in most plus-size sections.

As much as I felt like hiding my face behind a rack for fear of being seen shopping in the “Fat People’s section,” I found myself even more concerned with those shopping around me. Because I happened to be browsing in the juniors section, filled with impressionable teens. The store was packed with large groups of young women shopping for semi-formal dresses (Homecoming, perhaps?) and they were all shapes and sizes.

Luckily, it seemed I was the only one close enough to be hit with this verbal vomit. And, honestly, my gut reaction was to say something to this woman. But no matter the pithy comment I thought of, all of them seemed as if they would only exacerbate the situation; and give weight to her words. But now I wonder. Should I have said something? So that if, by chance, any young mind had heard, they would know that not all people agree with this statement nor think that it is right.

But, I admit, in that moment I fell victim to Body Shaming. I felt uncomfortable in my own skin. Worse, I didn’t feel like I had the “right” to say anything to that woman because “technically” I am a “fat person.” It seemed like it would be better coming from someone with a slimmer silhouette.

In less than 30 seconds, I felt less than.

But, perhaps, I could have calmly said, “I understand this section isn’t right for your daughter. But it is right for lots of young woman and your words were hurtful and inappropriate.” What do you think?

I started to observe the groups shopping. I noticed that groups of peers were generally supportive of each other. Each group contained a wide range of body types but instead of comparing or belittling, they lifted one another up. They suggested flattering outfits, complimented each other, and when in the changing room, if something didn’t fit or look right, they giggled about it instead of making disparaging remarks.

Conversely, I witnessed a different type of reaction between mothers and daughters. Moms were quick to point out things that wouldn’t look good when their daughter excitedly held up an item. Most often with a “Really?!” and a raised eyebrow. One word that can speak (negative) volumes. And the parents who had slim children seemed to flaunt them; many of these parents being less-than-fit themselves. As if their child’s attractiveness was a direct (positive) reflection on themselves.

Yes, I know it was clothes shopping, which directly lends itself to “body talk.” But why can’t it be positive, supportive body talk?

Soon after this, I found myself in the dressing room. As I faced the daunting task of trying on a pile of clothes, knowing that if I found 1 thing that fit well, it would be a success, I was presented with two options. One, to let that woman’s voice seep in and take up court with my mental judges, or, two, to dismiss her as an ill-informed person.

I chose the second, and this is what happened:

  • I actually felt some compassion for her. How? You may wonder. I realized she must feel so uncomfortable in her own skin, she needs to belittle others and take on her daughter’s identity in order to feel better. What a painful way to walk around.
  • I looked myself straight in the mirror and reminded Me that we each have our own story. My weight is from years of physical conditions, surgeries and side-effect laden meds. I used to “pre-emptively” want to explain that to people (strangers, that is!). Even going so far as hoping they would think I was pregnant instead of “abdominally challenged.” Now, I remind myself we are all walking around with our own stories, no matter the exterior appearance. Being overweight comes from a variety of sources, whether it is physical or emotional.
  • I also looked myself square in the eye and made myself stand tall and proud. I committed to trying on clothes with a critical eye; not one of a critic putting myself down but critically, assessing which things compliment me and which aren’t suited to my body type. Period.
  • And a funny thing happened… I ended up finding too many items that fit me well! Wherein I needed to pick and choose and leave half in the store for another time. That rarely happens!
  • I also walked through the store proudly. I didn’t let one person’s shaming shrink me. Depending on the brand, I can wear anywhere from a Lrg to a 2x. That’s a wide range! It also means I shop almost every section of the store. I committed to acting the same way no matter the area; to not feel like a fraud when I’m in the “regular sections” and to not slouch and hide in Women’s or Plus. I am who I am. And I belong here too.
  • Finally, I started to positively pay it forward. I complimented women of all ages and sizes on their outfits or accessories I found flattering. I encouraged someone checking out an item to try it on: “Wow. I think that will look great on you!”

As a society, we need to stop “Body Shaming!” That includes making negative, derogatory comments about people or celebrities wearing (what we think is) an unflattering outfit.  We need to refrain from making comments about what others choose to eat. We need to cease the “non-verbal commentary” of a pointed look, raised eyebrow, smirk, or the good ol’ eye-roll. Or even the sound effect comments: “Hmmm…,” “Eww,” “Ugh,” *sigh*, etc. We all know what I am talking about.

Body shaming isn’t right. Worse, it isn’t supportive. As women, we should constantly be lifting each other up not tearing away at each other so we feel better about our own selves. And this includes people who you do not know… It is ALL wrong.

All that mother needed to say was, “Oh, hon, this section doesn’t have your size. Let’s check over there.” Instead, within her original comment, she not only put down anyone shopping in that section, she also put down herself, and her daughter. Because I was once a slender and fit girl, too. I no longer fit that body type. No one knows where our lives will lead. And we all deserve the unconditional support of our mothers, sisters, and Sisterhood at large.

How can you support a fellow woman today and Stop Body Shaming?

Healing Through Pain

We have all experienced post-traumatic stress (PTS) from intense life experiences. It can come from a variety of sources: a near-brush with death; the impact of battling intense and painful illness; losing a loved one; a difficult childhood; or breaking off a long term relationship; to name just a few.

The event itself doesn’t matter so much as how it influences us.

This PTS can manifest itself in a number of ways: fear of future life-altering events; free-floating anxiety; newly formed phobias, unrelenting grief; unbidden tears; loss of affect; isolation; and withdrawal from activities. Many times the symptoms are insidious and creep up on us. We don’t even recognize the impact this life event had on us; or we are in denial of it.

We don’t want to admit we are vulnerable.

And, let’s face it, there’s a stigma around the acronym “PTSD.” Oftentimes, we associate it with major catastrophes and/or assume it manifests itself in ways that prevent the sufferer from engaging in life at all.

But once we take away our generalized perceptions of PTSD, there is much that can be gained by recognizing it in our lives, and working through it instead of avoiding it.

Let me give an example…

A dear friend suddenly lost her pet dog last fall. Using the descriptor “pet” seems to diminish the importance of their relationship. She, too, battles with chronic illness and her beloved dog (“L”) had been by her side and been her main partner through some of the toughest years of her life… those days she didn’t think she would ever get out of bed again. But her dog provided love, licking away her tears, and motivation to move, even if just slightly, because eventually she had to be taken outside.

Pets can be important companions to many of us, but I think they hold a special place in the hearts of those with chronic illness. They are the one being in our lives that love us no matter what… unshowered, in pain, grumpy, disheveled, confused, and lonely. They’ve seen the all of us and love us unconditionally.

I witnessed my friend experience months of unrelenting grief. I felt lost and powerless at ways to help her. All I could do was hold the space with her as she traversed this process at her own pace, and in her own way.

Then, one day a couple weeks ago, she had a revelation.

She was walking at the local reservoir, a favorite spot that her and her dog would wander. And she suddenly no longer felt alone.

She reflected on all the times L greeted her with unabandoned adoration, even when she didn’t feel like she deserved it herself. She remembered feeling so down all she could do was lie prone on the couch, too fatigued and depressed to even lift a hand to pet L. But her pup didn’t care, she would climb right up on that sofa and comfort my friend instead. She chuckled as she recalled 10 hour days away from home, rushing in worried because she hadn’t even stopped in to let L out to pee. But, again, her pup didn’t care; she greeted her with enthusiastic excitement just because she was home. No judgement. No shame.

She realized that all these negative thoughts she was having about herself were in direct contrast to what her dog had felt for her. That the best way to honor L’s life was to treat herself with the same unconditional acceptance and love that her pet had.

And then she said the most remarkable thing: “If I could find meaning in her life, I can find meaning in her death, too.”

She went on to say she had fallen into the victim role, angry at her pet for not being here to help her through this grief. Knowing this is an irrational thought, but her heart aching because L had been the one to help her through every difficult emotion over the last decade+. And this was the most painful emotion she had ever faced.
But, another “a-ha moment” had come to her: before L died, she only had her there to help her when they were physically close. Now, she had her with her all the time, and could tap into that unconditional love and understanding whenever, and wherever she needed it.

“To live in the hearts of those we love is never to die.” (Thomas Campbell)

She concluded by realizing that by taking care of herself, she is better able to be there for others. She won’t reach out if she isn’t making life choices that are in her own highest good.

And I have witnessed this transformation… she is now providing support to others that are grieving, because she is authentically speaking from her own experiences.

And by sharing her experience, strength and hope with me, she affected me deeply. It demonstrated the importance of living through the PTS until you can see a purpose in a difficult situation.

I, too, am in the grieving process right now. I am not grieving a specific person or being, but then again, that’s not entirely true. I am grieving someone. I am grieving myself. The person I was pre-illness. And I realize I have been living with the silent stalker of PTS for years, because I haven’t allowed myself to fully open up to this process of grief yet. I thought I was “okay,” that I had moved past it, that I was accepting of my situation. And in many ways I am, but that doesn’t negate the need to grieve what was and what could have been.

I need to look at that “lost Tam” with unconditional love and then give my current self that same gift of love and acceptance.

What experiences in your life have left a residual stain on your soul? An echo of yesterday that you haven’t completely been able to let go of yet?

I realize PTS doesn’t just go away by wishing it so. The passage of time doesn’t necessarily allow it to fully fade into the sunset. And pushing it to the recesses of our minds, tucked away in the box marked “things I’d rather forget” doesn’t work either. The only way to move beyond the experience and the left-over PTS, is to move through it. To dust off that box, open it up, and feel every ugly, painful, sad, angry, resentful, shameful emotion until we are spent. Until there is nothing left except an empty box to start re-filling with healing thoughts of love.

And, remember, this process can be big and scary and overwhelming. But you don’t have to go it alone! In fact, it’s advisable to find people that have traveled this journey before you to light the way. My friend experienced all the stages of grief with the help of support groups, hotlines, and friends. And she is now paying this gift forward by helping others. And I’m reliving my past with the help of a mentor and my friends, no longer holding these feelings in secret.

May today mark the beginning of a new healing journey for us all!

Toeing The Elusive Line of Life

tight_rope_walker_530w

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!

Finding New Avenues of Joy: What’s Your Machu Picchu?

and-in-all-of-our-troubles-I-have-great-joy.-2-Cor.-7-AnExtraordinaryDay.net_

Finding new avenues of joy… several months ago I randomly (perhaps not so “random” after all!) had the T.V. on during a Good Morning America segment on the NFL player, Steve Gleason.  He’s a New Orleans Saints’ hero whose life has changed, all because of the devastating disease, ALS (Lou Gherig’s).  Yet, he does not view his life as a devastation… when told he needed to “prepare himself to die,” his first and only thought was, “I am going to prepare to live!”

Although it has been 6 months since I first viewed this stunning story, it has never strayed far from my thoughts.  I’ve wanted to share it with others, but until today, have not been able to “find” it on the internet.  For a while, I thought perhaps it had been one vivid, prophetic dream!

Then I awoke this morning thinking of “bucket lists,” and once again, the empowering tale of this man came to mind.  I began my futile searching again, but this time I must have strung together the right combination of words, because it appeared at the very top of my search results.  I have faith that there is a reason today was the day I finally re-discovered this tale of strength, perseverance, and above all, JOY.

The idea of creating an annual “Bucket List” has been tumbling around my daily thoughts.  Not sure if I wanted to jump on this trendy bandwagon, I have resisted this idea.  Yet, there is something so appealing about following others yearly journeys as they check things off their bucket list.  As I read others, I am surprised and, admittedly, intimidated by the audacity of their goals.  My mind immediately goes to all the reasons why this will not work for me… all my limitations: not enough money, not enough time, not enough physical well-being, on and on and on!

I think, why set myself up for failure?  But then there is that little intuitive voice that never steers me wrong saying, “why not set yourself up for success?  Each bucket list is a personal endeavor; it can be shaped to fit my unique set of circumstances, needs, and dreams.  By setting goals, I will be more apt to make a game-plan to make them happen.  By writing down my annual hopes and dreams, I will be setting my intention with the Universe.

And so I’ve begun to toy with what my 2014 Bucket List will look like.  For example, I have a deep desire to dance once again.  It would be unrealistic for me to set a goal of dancing the Suite of the Sugar Plum Fairy en pointe, like I did when I was 18, healthy and fit!  But, I am graced with living in a community that encourages creativity in people of all ages and abilities.  Dance studios and open-classes have exploded over the last few years, now including an abundance of opportunities for the community to engage in a wide variety of dance styles, at all levels.  I’ve begun by getting out and experiencing these offerings as a patron.  And I have been proud to support and celebrate these burgeoning endeavors.

But now it’s time for me to get off my audience seat and onto the stage.  But, what does this mean for me?  I am not blind to my limitations, but I am not going to let those stop me either!  As Steve Gleason so eloquently puts it in this interview…

“I now search for new avenues of joy.  With each loss, [I] have worked to find a beautiful replacement.”

And my dance replacement looks something this… finding a way to move my body in a fluid and free-form motion.  I am drawn to Carribean danceCaribbean styles, where the dancers of all ages, sizes, shapes and abilities are smiling from ear to ear as they engage the music fully.  There is a freedom and openness to this style that is very appealing to me. And, Volia!… I have the first item on my bucket list!

This is the beauty of creating this list annually.  Now that I have set this goal (my intention), I am already developing a plan of action in my head. First step?: researching studios and open-dance nights.  And that’s all I have to worry about for now… just taking that first step.  Taking the risk to say, “I am worth it.”

I will not allow my physical limitations to limit my ability to experience joy!  My Bucket List may look a helluva lot different than the ones floating around the web.  But, I choose to use those as inspiration… not as a point of comparison and feeling “less than.”

machu picchu steve gleasonIf anything, the most intimidating “list” I’ve seen is Steve’s.  Once his diagnosis was delivered, he made the conscious choice to always have something to look forward to.  His most recent goal and accomplishment?.. climbing to the top of Machu Picchu!!  How on earth does someone without the use of their physical body climb Machu Picchu, you ask?  He does not do it alone!!!  And, to me, that is one of the best legacies he can pass on to others.  Not only that he “chooses to focus on the beauty of now,” but that he relies on the love and support of others to achieve his goals.

My Bucket List is not going to be a singular endeavor.  The goals and dreams will come from my inner soul, but the steps to achieving them will be paved by the love of my friends and family.

I would like to offer the same gift back to you: to be your support and cheerleader in any way needed as you create and then implement your 2014 Bucket List!  In the coming weeks, I will slowly unveil my own list as it evolves.  And I hope you will take the journey with me as I check off the items in the coming year.

Please share your bucket wishes, too.  For inspiration comes from without.  And without all of you, I would be lost.

I encourage you to take just 5 minutes of your time to watch the GMA interview with Steve Gleason.  I dare you not cry. I dare you not to smile. I dare you not to come away inspired!

http://gma.yahoo.com/blogs/abc-blogs/steve-gleason-embraces-challenges-lou-gehrigs-disease-battle-121402622.html

Shine On, Soul Beacon, Shine On!

lighthouse

I have mentioned in many of my posts the idea that each of us has our own Soul Beacon. This is a concept that came to me organically during a moment of extreme illness.  It was a vision and even more so, a “knowing,” that I felt soon after my first near death experience. I was in a “stripped down state,” mentally, physically and most certainly spiritually.  I felt raw and exposed.  But, in this vulnerable state of being, I opened myself up to being completely vulnerable.  I felt as connected and observant as a child when discovering something new in their environment.  I became aware of the flow of energy between people.

I started to notice that energy exchanges could be both positive and negative; they could either lift one up or drain them entirely.  This was not just a feeling; I actually visually experienced this phenomenon. That insight gave me an intuitive knowledge of human interactions that I hold to this day.  When people exchanged laughter or encouraging words, streams of soothing, white strands of light would connect the interacting parties.  I saw this as a “recharging of the soul.”  It was pure energy, being given and being received.

Conversely, when an exchange was less then pleasant or supportive, there wasn’t a free-flowing exchange of energy. The flow would become heavily one-sided, with one party literally “sucking the life” out of another. This would show itself in forms of jealousy, fear, anger, insecurity, and dominance.

I had a clear vision of a beacon of light.  I saw that each of us is born with a cache of energy.  But just like any form of energy, if it is not recharged (refueled), it will deplete.  And when our energy sources are low, we experience depression, illness, sadness, despair, fatigue, hopelessness, and diminishing spirituality.  Most people respond to this feeling by hoarding the small amount of energy they have left.   We don’t share this energy out of fear of running on empty.  But in that hospital room, I discovered the key to unlocking a never-ending supply of energy.  The key is…

You have to give your energy away in order to receive more for yourself.

Give it away?! Yep.   This is where the concept of a Soul Beacon comes in.  Imagine a lighthouse.  The night is foggy and therefore the beacon’s light source barely reaches beyond its own standing.   Now translate that to the situation I spoke of above.  You’re feeling “foggy” and out of sorts, so you only shine your light source on yourself.  You keep your depleting energy close at hand and do not include anyone else in your circle of light.  Eventually, that circle of light will get smaller and smaller until its hardly providing any energy source for you to face the world.  This is the moment when many want to curl up in a ball and tell the world to go away.

This is when you need to stretch your final energy source far and wide; to imagine that Soul Beacon, seated in the center of your body, stretching its fingers of light to illuminate others paths.  Because this is what happens when you do: that light shines on someone else in need; the receiver is then recharged from this positive exchange and shines their light back onto you.  You will feel your inner beacon growing in strength.  With each positive interaction, the foggy veil of sadness and fear will lift.  You will start to have energy to take that next step, and then another.  And the best part is, while you’re recharging your own energy source, you are also giving that gift to someone else!

Who are you going to illuminate today?

How can you reach out in order to replenish your own light source?

What choices can you make today from a place of compassion and faith whether than from fear and insecurity?

How can you shine your Soul Beacon from heart to heart?

Read the story I wrote of a young girl and an old sage in: It All Began With A Beacon of Hope (click link)

Please share your stories and experiences!

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!).