Did I Make Myself Sick?!

Did I make myself sick?
This is a question that has always haunted me. And most recently it has resurfaced.

If we have the power to heal ourselves than the inverse must also be true… we have the power to make our bodies unwell. Right?
A week back, a dear friend was doing some energy work (Reiki) on me. During this session, she received messages from my body. This is not uncommon, and I generally find these messages very helpful.

This message was deep and powerful. My friend told me , “The reason your body is filled with so much sh*t is because you have held on to too many secrets from your youth. And by holding all of this in, it has accumulated in your body, therefore developing disease. It is time for you to speak your truth. To no longer be afraid of how it may affect other people, only to share your story. I feel that by sharing your entire truth, you will be helping many others who are struggling, silently, with similar experiences. This is your path, not only to help others, but also for clearing out all the ‘crap’ and getting well.”

I’ll admit at first this was empowering. All I had to do was write and then share, without fear, my experiences. A clear path to wellness was laid out for me!

And I did start writing. It was, and is, a freeing experience.

But I also started to think about the root of the message: by keeping these “secrets” (which for me surround years of sexual abuse at young ages; a fact my friend was not aware of, making the message all the more powerful), I had made myself sick.
That’s what it came down to. And I started to feel uncomfortable about this.

I shared a summary of this message in my monthly spiritual group. The theme was Desire; and I had written a free-floating thought poem…

“Desire, what do I desire?
A morning song without the rain
A day long reprieve from the pain
A skip, a jump, a roll in the hay
Unencumbered freedom from a body untamed…”

By the end, my desire had become simply for a life of feeling connected, “to know and be known” and towards “internal peace and love of self. To acceptance of Me; and every day I’m Here…”

But, this is the kicker: there was just one line in there that my fellow group members picked up on: “I have been told that I fore-chose this life…”

And they became incensed, on my behalf. Telling me not to take on someone else’s dogma as my own. That that would mean that all Jews murdered in concentration camps fore-chose that path, as well as other startling examples.

So I took both opposing views and sat, to develop my own.
I began to think of a young girl I know, just finishing her first year of preschool, and her almost third year of constant chemo for a rare form of cancer. And I thought, “How could a 2 year old fill her self with enough secrets to make herself sick? How could her story possibly be long enough yet, to tell, ridding her mind and spirit of this ‘baggage’, making her body well?”

Yes, I believe we all have the capabilities to make better choices for our spirits and bodies, to live from a mindset of wellness that leads to true physical wellness.

But there is also a huge component of our diseases that are out of our control. And if we get stuck in thinking, “Why am I not doing enough or the right thing to make myself well?” Along with, “What did I do wrong in my past to make myself ill?” It will only lead to a place of despair.

I have received many messages that I have the power to make myself well. But I do not believe that means I am meant to “fix myself” on my own!

It means a myriad of things: making the right choices for my body, through eating well and exercising; strengthing my circle of support with old and new friends, and accepting their help, without conditions; choosing a team of well-respected doctors who can guide me; doing just enough research to be informed without too much to fill up my head (we all know what I mean!); meditating and doing activities that lower my stress and pain levels; keeping my physical space free of clutter and my sleep space a place of renewal; taking time to laugh as well as cry; and so much more…

I also take time at least once a day to visualize a little army of worker elves marching through my body and fighting off my disease; sending it into Mother Earth to be cleansed, recycled and renewed into something beautiful and useful.

These are tools I think are helpful for any person…well- or dis-abled.

And, yes, I will continue to write my story. Just by being away from the blogging community, I have gotten “clogged up.” There is power in speaking one’s own truth, sharing it with others, and hearing their truth spoken back. This can only aid in the progress of my healing.

But can this, or myself, alone, “make myself well?” That’s a tall order! And all it makes me think is that I somehow made myself sick. And that’s a very isolating thought.

I, alone, can’t fight any of this.

That goes against My Dogma: It takes a village…. To keep the flame alive and pass it on.

I don’t know why I live a life filled with unpronounceable, rare illnesses. But that’s not my job to know or figure out either.

The only difference between me and that precious 4 year old girl is that I know I am sick where she does not (quite yet). Her attitude can teach me, and us all, a great lesson. She just lives each day as it comes. Feeling her feelings when they arrive, asking questions with out shame, playing when she feels like playing, resting when her body tells her it’s tired; and loving everything and everyone around her deeply, with natural childhood enthusiasm. Her disease is a part of her day, but it is not who she is.

She did not make herself sick, and the key to “making herself well” is already inside her: its by going forth one step at a time and not missing a beat when she has a chance to fully embrace and engage in the gifts of life that are in front of her!

It’s as simple as that. Not secrets, not truth telling, Just Living.

Lighting the Unknown Path

As I have said before, it is the “unknown” that is always more difficult than the knowing. The waiting. The wondering. The wandering… of the mind as it tries to grasp on to something concrete.

My last several months have been spent in this suspended state. First we found out that our home of 15 years was suddenly being sold and we had to, in weeks time, find a (hard sought after one story) home, apply for a mortgage (which had become a Big Scary Monster in our heads), sort and pack through years of our life and family “heirlooms,” find the means to buy (and fix up) said house, move and settle, the list goes on.

The only way I survived this process was JUST doing the next right thing.  Nothing more. My husband’s anxiety would reach new and alarming heights and I would have to remind us both, “okay, let’s take a breath. Now, forget ‘The List; ‘ what’s Just ONE Thing we can do in this moment?”

And you know what? One (baby!) step at a time, we walked our way right through the scary terrain of the unknown and into our brand new home.

These are the lessons and skills I so desperately need to remember to apply to my life now.

Because just when I thought I was leaving the path zig zagging through The Woods of Uncertainty, I fell into a Bog of Burdensome Worries! (Didn’t mean to go all Tolkien on you!).

I’ve known since fall that my body was heading into unknown territory again. It’s both a blessing and a curse that I am so in tune with my physical being after years of severe illness and trauma, that I can tell as soon as I start to go off-kilter.

This time, I knew somehing major was brewing.

So, instead of going to the doctors with these worries  (although I didn’t sugar coat my concerns at my appointments either), I turned to internal pep talks, such as: ” Hey, dear body of mine, I know you are giving me warning signs that you’re failing in new and different ways, but could you just please hold on until March? And then I promise I will attend to all of your needs with the upmost of care!”

That wasn’t too much to ask, was it? Guess it was!

Because my “gift” for Christmas Eve was to wake up without the use of both my legs. Totally and completely, from the hips down (yep, includes the bladder, too!). What fun!! For two days, I could  not walk and afterwards, I had complete numbness, like my legs had fallen asleep and could not be stomped, shakened or rubbed “awake.”

Yet, did I go to the hospital? Nah! I had a host of “good” excuses… “It’s the holiday; it’s a weekend” and the creme de la creme: ” I just don’t have time for this right now!”

So my body went from flashing yellow to a blaring red : STOP!!!!!

A little over a month ago, I was reading when half the page disappeared. No joke. I could only see half of every word. A very strange and scary experience. So I shook Dave awake with a, “Honey, I need to go to the ED.” Complete resignation. No questions anymore.

The details since don’t matter as much as the lessons I’ve learned. But in brief, I am in an even deeper state of limbo… not quite knowing the true cause of my weakness and Optic Neuritis (the partial blindness ) yet (MS? CIDP?) and therefore not able to receive the right treatment aside from high dose IV steroids to abate my symptoms.

So nothing left to do but Surrender. Wave the white flag of blind faith (literally this time!).

And to reach out for help. I already feel physically vulnerable, so why is it still so hard to completely crack open and be emotionally vulnerable, too?

If anything, this move was a great practice lesson. My husband is the first to open his door to others when they need a helping hand, but he latches every bolt when it comes to receiving help for his own needs. This time I didn’t let his fear of “not seeming like enough” dictate our choices and I threw open every door and window wide with a sign hung proudly, “HELP NEEDED WITHIN.”

And my friends and family showed up. They packed, they listened, they moved, they cleaned and scrubbed my new abode. All with a smile and an encouraging hug. No expectation of return payment.

This move would not have been possible without this team!

So why should my health be any different?! I need to throw out the old skipping records that get stuck on the refrains filled with shame. Shame over my diseases, over my needs and inability to “do it all” for myself; shame over what I used to be like vs what I am like now; shame over always needing more.

But, most of all: FEAR. Fear that I won’t be able to give back. But we all have our own gifts to offer to the world. And for a long while, mine were coming in the form of my words; of being completely vulnerable through my stories. Through sharing with others and having them, in turn, share with me.

But as soon as life became overly tangled, I stopped writing. Which essentially dammed up my River of Grace… the universal energy that flows into, through and out of me… on to you… connecting all of us on this divine journey of life. So that WE ARE NOT ALONE.

So I think of Buddha’s quote, “if you light a lamp for someone else, it will brighten your own path.” And it helps me remember that whenever someone “allows” me to help them, it always feels like I am the one receiving the gift!

So while my path is now being illuminated by the inner light and energy from other’s  (as I write a dear friend is coordinating meal help for us; fulfilled by those who know me and others who are doing so purely as a random act of kindness); I am holding out my own candle in hopes of lighting just one other’s dark path of the unknown.

There is so much going on beneath the surface of each of our lives.  Let’s look just a little deeper inside.

I know I’m grateful someone stopped and did so for me. All while holding a candle to help light my way, as I take just one next step forward along the path. For as long as I’m moving forward, I’m heading in the right direction.

Namaste.

Feeling Free to Say “I Am Less Than Able Today”

Why do I still feel embarrassed to express to my “well-bodied” friends that I am less-than-able on many days? Partly, I struggle to find the right words; the delicate balance between clear explanation and what I fear may sound like whiney complaining.

And then there is the bigger problem: the fact that I look so well. Especially on the days that my friends do see me. Because it is the days that I feel well enough to wash my hair (perhaps!), put on some makeup, get out of my lounge clothes, smile, and be present, that I also am able to keep my plans with them. They’re not seeing me on the days when my arms feel like 20lb. weights, too heavy to lift and brush the bed-tangles out of my hair. Or when I am still wearing what I woke up in, which many times even means what I went to bed in, because I was too exhausted to do anything but take off my bra the night before!

And truth be told, the sound and timber and strength of my voice doesn’t often change that much when my physical body is feeling poorly. And for me, my larynx can be in spasm causing hoarseness when I do feel well. So since that’s such a poor barometer for “feeling well vs. feeling poorly,” why is it then that people seem to think that what they hear over the phone lines is some sort of truth serum?

How many of you have heard those dreaded words, “Oh, but, you sound so good today! I’m glad!”

Unfortunately, they are often spoken before I’ve even had a chance to say how I am truly doing. So, I hesitate. Because it gets tiring saying, “um, thanks. But, actually, I’m not doing so hot today.” And even with my most well-intentioned friends and loved ones, I sometimes hear skepticism creep into their response. Because it just doesn’t make sense: but they sound so good…?

I share this all because I think it is a helpful reminder for anyone: both those of us struggling with day-to-day- fluctuations in our physical (or mental) capabilities and for those who are friends to, family members of, or caregivers for (including professionals) those with these “Invisible Illnesses.”

A quick reminder: Invisible Illnesses encompass a wide range of conditions and diseases. Take the common condition of arthritis, even. Yes, a joint could be swollen or red, but many times it can ache with no outward physical manifestation. So now think of all the conditions that effect our “internal systems,” from brain chemistry, to GI disorders, blood, vein and heart conditions, nervous system pain and disruption, connective tissue deterioration… the list goes on and on. These are the “Invisible Illnesses” that hide behind an external mirage of wellness. Wouldn’t it be handy if when something was ailing or failing on the inside, a bright red “warning spot” would emerge on an external location?! I sure would find this handy! Not only for letting others visibly know something painful is going on, but also to help pin-point for both myself and my doctors, what system is causing the pain.

Since this warning system technology is yet to be invented, we have to trust what people say. To take them at their word. You don’t have to completely understand what someone is describing to give them love, support and empathy. And unconditional trust in their word.

Sometimes I worry (too much so) that the person I am sharing my ills of the day with will think I am only saying it to get out of seeing them. At least for me, this is never the case! In fact, I am one to mask my true feelings of pain and discomfort just to avoid hurting or disappointing another. I know I am not alone in this.

So what can we all do as a collective group who cares for one another, to combat this?

For the “well-bodied” loved one:

1. Don’t Assume: Don’t assume just because we sound okay, or even because we look okay, that we feel okay. Don’t assume that because we were able to yesterday, we will be able to today. Or even, if we were able 15 minutes ago, that our bodies’ are still feeling as abled in This minute.
2. Listen: Please ask us how we are really doing. And then give us the space to truthfully answer. Take our answers at face value; please don’t judge or question (or fill in the blank!).
3. Don’t feel like you need to fix the situation. All we really need is acceptance and acknowledgement: “Wow that sounds hard/painful/frustrating. I am sorry you are feeling so lousy/cruddy/down today.”
4. It’s okay to ask “Is there any way I can be of support to you/help you right now?” But also know that we may not have an answer for that. It’s not that we don’t want your help (and I always like hearing a sincere offer from a friend), it’s just that: 1. We may not truly know of any way that you can help right now and 2. Many times all we need is space and time to heal. Which leads me to…
5. Give us space without expectations. We know (believe me!) how hard it is to accept that there is no clear pattern to our symptoms. We may feel better in 1 day, 3 days, maybe even 30 minutes and that can be frustrating. So we just ask for your patience as we navigate the unknown.
6. Don’t stop asking. This is a big one! And I don’t mean “don’t stop asking how we are doing” (although that’s a good thing, too); I mean don’t stop asking us to do things. Because there still are many days when we are able. And spending time with you, helping you out and supporting you, still means a lot to us. This is what feeds our soul and keeps us striving to be and get well.

Now, onto the “Invisible Illness” group:

1. It’s Okay. You’re okay. You are whole and complete exactly as you are. That was hard for me to write, because I am not just saying it to you, I am saying it to myself. “I am whole exactly as I am.” You/I/WE do not have to be anything other than what we are capable of being. We did not create these illnesses nor are we using them as a crutch to “get out of things.” They inhibit what we can do on a daily business, but they are not the all of us.
2. We are not defined by our illness. Our friends like and love us for who we are: the pure essence of us, our true spirit. Not for our physical abilities or dis-abilities. And if that is how someone defines “compatibility” in a relationship, they are not the kind of supportive friend you need, or deserve.
3. Speak your truth. Don’t sugar-coat the situation. You don’t need to go into great length or detail (unless you need/want to). Just be clear and concise. Remember we are speaking a language only other people with chronic illnesses can understand. A friend of mine with varying daily abilities can say just one word to me, or give me that look, and I get it. It’s not going to be that way with all of our friends and caregivers, so…
4. Be patient. You may need to explain your daily needs and limitations over and over again. This can feel frustrating or maybe even like the other person is questioning your authenticity. In most cases, this isn’t true. Remember: it’s a foreign language, and people don’t learn to comprehend a foreign tongue overnight! Most times, our loved ones keep asking questions, only because they want to understand.
5. If someone asks how they can help, and you can think of a way, ASK IT. Don’t be stoic. Don’t hope that they’ll just guess at what you need. (How could they?!). And don’t ever feel embarrassed. This last one happens to me. Because I start to think “But, I should be able to do this.” Trust that if someone offers to help, their offer is sincere and that if what you ask for is too much for them, they will let you know. Think how helpful it would be to have someone cook you a meal, or run an errand/do a household chore, or even help you to color your hair.
6. Remember that friendship is based on unconditional love. Our friends and lovers chose us for the person we bring out in them, just as we love them for the person they bring out in ourselves. We are all here to be our best selves, but that does not mean trying to be something other than you are. Or can be, physically. There is more to you, there is more to me, than our physicality.

It is up to all of us to spread the word on Invisible Illnesses. To take the stigma and mis-understanding out of them. Because millions and millions of us walk around looking “just like everyone else,” while on the inside of bodies are crumbling.

The first step to undoing all the misconceptions around these illnesses, is to start with a deeper understanding of each other, on a one to one basis. Which includes a deeper understanding of our own needs and abilities, followed by acceptance of same. It’s time to embrace all that we do bring to the world rather than all that we do not!

National Rare Disease Day: Effects Us All

An estimated 25 million Americans have what is considered a “rare disease.” I am one of those lucky few people. Actually, a whopping 5 of my diagnosed conditions are considered rare: Trigeminal Neuralgia, Sjogrens, Vasculitis, Gastroparesis/IBS and the “Big One:” Relapsing Polychondritis. To be qualified as “rare” the disease has to effect fewer than 200,000 people. Relapsing Polychondritis effects only 3.5 people per million, making it an extremely rare disease. Yippee!

Why is it important for you to be aware of rare diseases? We all know someone with a rare illness, even if you don’t realize it… for many it is as close as a dear loved one, for others, a co-worker or neighbor. Rare diseases impacts us all. 1 in 10 Americans has a rare disease. Many are disease names that would sound completely foreign. But others are startling familiar; all but a few cancers are considered “rare.”

The biggest challenge of living with a rare disease is treatment. Very little research is done on rare diseases and therefore most treatment options are considered “off-label.” More and more insurance agencies (especially Medicare and Medicaid) are beginning to deny these treatment options. I am all too familiar with this struggle:

One year ago, I started an infusion (IV) therapy that was showing remarkable progress in the decrease of my symptoms and increase in my quality of life. I was hopeful about my disease and the possibility of remission for the first time in a long time. Then on the eve of my third treatment, the doctor notified me that my insurance decided to deny the treatment because they could not find any research on record of it being effective (obviously!). They not only halted all future treatments, they retroactively denied the treatments that had already been given, totally ~ $7000!

I have tried to appeal this decision, get help from government agencies and representatives, receive grant or medical support funding, and to find clinical trials I qualify for. All to no avail. There are many trials being conducted with this particular medicine, but all are on already studied and established diseases.

Beginning this calendar year, I have run into the same situation, but now with drug options that I have been receiving for long periods of time, all shown to be effective in my individual care. But these documented facts are not being taken into account. And my medical insurance is either denying them, or placing such high deductible payments on the prescriptions that I can no longer afford them.

For some reason, the insurance community has yet to recognize that by denying these effective, albeit unstudied treatment options, it is only increasing the cost of medical care in the long-term as my, and millions of others, diseases rage out of control.

This same situation is happening to millions of Americans. Most likely someone you know has experienced this. We all know someone battling a rare illness, even if they are living in silence with it. Currently, there are about 7000 rare diseases… and less than 400 FDA-approved treatments. Just pause and think about the impact of that for a moment.

This is why rare diseases are often referred to as “orphan diseases.” For we have been abandoned by the medical, insurance, and pharmaceutical communities.

People with rare diseases have difficulty obtaining an accurate diagnosis, and oftentimes wait 3-6 years to receive any diagnosis. But that’s just the first hurdle, because once a diagnosis is given, it can be even more difficult to find a doctor with experience and knowledge to treat the disease. For me, I have to see a myriad of specialists who each treat one part of my disease, or one set of symptoms. They rarely communicate with each other (if at all) and no one doctor is looking at the “whole picture.” Many times, I am the one educating the medical provider on my disease. This puts a lot of pressure on the patient to be their own advocate and teacher. It’s exhausting!

This can all begin to feel overwhelming. And you may be wondering how on earth you can even make a dent in this problem.

Well, today is National Rare Disease Day. An event that is really only in its infancy, but growing globally every year. It began in Europe in 2008 and the US adopted it in 2009. It is sponsored by NORD (National Organization for Rare Diseases), who since 1983, has been the biggest proponent in the advancement of research and treatment develop for rare diseases.

This year’s focus is on recognizing the stories of those living with and alongside rare diseases.

For the biggest challenge of living with a rare disease, is not the lack of medical care, or knowledge and accessibility in the medical community… It’s actually the feeling of isolation that comes along with these rare diagnoses.
But, by sharing the stories, your own or that of a loved one; by posting them on social media; and publicly showing support for all of the 1 in 10 Americans diagnosed with a Rare Illness, you are shining a light of love, support and hope on all of us.

By bonding together, through not our individual disease, but through the collective difficulties and trials that come along with a “Rare Disease,” WE are no longer alone. WE are no longer isolated.

As the NORD motto states: “ALONE WE ARE RARE. TOGETHER WE ARE STRONG.”

You have all given me that gift over the year and a half that I have shared my journey through this blog. Thank you for that .

For today celebrates not only the super human strength of those who get up to face each day despite the challenge of their disease, it also celebrates YOU… the caregivers, spouses, medical providers, friends, and co-workers who support us and carry us through. And it is for the anonymous “kind strangers” that open the doors when we’re struggling and give us smiles of encouragement. Today is for ALL of us. For Rare Disease is not an individual problem, it is an American Problem.

Rare Disease Day Video (watch, post and share!)

To find out more about Rare Disease and ways you can help, follow the links in this blog and below:

NORD: National Organization for Rare Diseases

Rare Disease Day 2015

“Living With Rare Disease”

Dr David Trentham (article on Relapsing Polychondritis by leading physician for disease)

Is It Beautiful or Useful? Resolution for 2015

I remember hearing this sage Feng Shui advice: when de-cluttering your living or working space, look at everything in your environment with the discerning question: “Does this object bring beauty or is it useful?” If it is neither of these things, then promptly throw it out. I have decided to apply this principle to other aspects in my life in the New Year.

This is my so-called “New Year’s Resolution.”

When you live with a daily chronic illness, as I do, time and energy are hot commodities. I have to make discerning choices as to how I am going to expend my limited resources. But it can be difficult at times to determine what the right choices are. Especially when you start to factor in concerns over other people’s feelings and obligations you feel you “should” fulfill.

Then I realized, what if I ask myself the above question: “Is this activity going to bring beauty/joy into my life or is it useful?”

In the first category are all the activities that bring me the most fulfillment, spiritually or emotionally. They are the things that make life worth living. They are the little bits of sunshine that carry me through the cloudy moments; the Beacons of Hope amidst the storm that will surely come.

The second category may not bring an immediate sense of happiness or beauty, but are necessary tasks for my continued survival. These are doctor’s appointments to maintain my state of being, procedures to treat my health, daily exercise to “oil” my joints and increase my mobility, keeping my living space free of clutter, and taking time to plan and prepare healthy meals. Also, landing here, is taking the time to evaluate things I cannot do on my own, and then asking for help from others.

It’s much easier for me to fill up the list with “activities that bring beauty and joy into my life.” And, as much as I need to look at the pile of activities that bring me joy, and rate them from “most joy” to “least,” just by asking the initial question, I have already weeded out all the things we as humans engage in just because we think it is what we should be doing, or what others expect from us.

Going to work each day, even when it is not the most satisfying, is useful because it brings home money to live and thrive. Going to lunch with a co-worker that generally annoys just because you are afraid to say no, is not useful nor beautiful. That time could be spent doing an activity for 45 minutes that feeds your soul so that you can return to work more light-hearted.

For me and others with chronic illness, we have what has been coined as a “limited amount of spoons” each day. Every time we have to expend energy (any amount), we have to give up a spoon (or two, or three). Once our daily allotment are gone, they are gone. Too often, I forget this. I start trying to hand out forks and knives, items that really are only on loan and carry a steep penalty. I am borrowing against myself. And then I will pay in the days following when I have nothing left in reserve and my body shuts down. Completely.

This year, I want to do differently. I want to respect my body. To honor its limitations. To realize that if I pay heed to the true amount of energy I have then I can enjoy a small amount of truly meaningful activities each day.

I want to recognize that many times the activities that bring the most beauty and joy into my life are ones of quiet solitude. Moments of peaceful participation in painting or writing or reading or just sitting and listening to music.

I want to pause when someone invites me out for an activity and listen inward to see if my heart is singing with the beauty of this possibility. Or, if it is sighing with resignation because I feel like I need to fulfill an obligation.

It has only been just under one day into the New Year, but I have already applied the “Beauty and Usefulness Principle” to each moment of this day. And, you know what? It has both kept me fully present and making conscious choices throughout my day, big and small. I have balanced my choices by spending some time throwing out old clutter (useful) and prepping a canvas to paint sometime in the next few days (beauty/joy). I have kept each activity short, with periods of rest in between.

My heart feels full and satisfied.

Try out this barometer question when facing various choices in the next several days, and see where your heart leads you.

And may reading this give you support if you live with chronic illness, or understanding if you are a friend to someone struggling daily. When we have to say no to an invitation, it isn’t saying no to you, it is recognizing and honoring our own limitations. By staying true to ourselves, we are true to others.

HAPPY NEW YEAR!!

Chasing The Elusive “WHY ME?”

Inevitably, at some point in time, after receiving the news that one is facing a long-term or chronic illness/disease, comes the elusive question of ,”WHY?!” For some, this may be a fleeting call to arms, for others, it becomes a constant refrain of, “Why?” or “Why me?” or even “Why, God, why?”

During my last hospital stay, the progressive pastor of my family’s church came to visit me. After the necessary check-ins were taken care of, he turned toward me, and simply asked, “Do you ever find yourself questioning ‘why?’.” I have wondered since what direction he was taking the conversation in, if he had any expectation of what my answer would be. But this has been fleeting, because in all truth, I think he was just curious.

In that instant, though, there was no hesitation; I didn’t even pause before responding: “Yes. I am sure I have asked, ‘why?’ at some point in this long journey. But I have quickly discovered that this is a fruitless pursuit; a question without an answer; a path that only leads me to remaining stuck in the miserable moment.”

But that conversation has left me with equal curiosity. What is the point in asking, “Why me?” in the face of any number of events (I’ve heard this turn of phrase applied to everything from an unexpected car repair bill to a diagnosis of cancer), when one could just as equally be asking, “Why not me?”

The relentless lamenting over the “why” produces an on-going cycle of strife and depression. How could it not? There are no (satisfactory) answers to this perennial question. But there are concrete, solution-oriented, answers to the question of “What next?” We don’t know the why, yet we do know the how. It’s what we do with the how in the now that defines us.

I know I am sick. I know that there is currently no cure for my autoimmune condition(s). I know that my disease will continue to progress, causing a ripple effect that may require future surgeries and invasive procedures. I know that the mountain of daily meds I take to treat my diseases and conditions also create an equal amount of unpleasant side-effects; and that it is difficult to separate the two apart.

But I also know that I am a fighter. I am creative in the face of challenges. I discover new pathways when faced with a seemingly impassable road block. I am a giver of light, love and energy. My mantra is “Hope.” I know that I do not have to face this life alone, unless I choose to isolate. Which I do not.

This is where I can put in action the “What next?!”

Each surgery may chip away at the person I used to be. But that’s the key, used to be. Not the person I am now. Life is not stagnant and neither am I. In the course of my conversation with the pastor, I shared my views on the River of Grace that flows through me, receiving energy from beyond, recharging my own Soul Beacon, before continuing to flow out into other souls around me.

He smiled and said, that sounds like what Jesus speaks of in the bible, “Our Well-Spring,” that source of God that flows through each and every one of us, just waiting to be tapped into.

I have heard many people refer to this well-spring in their own words. I have heard it be called: Universal Energy, Chi (Qi), Kundalini, Indomitable Spirit, God’s Grace, Life Force, Eternal Flame, and many other monikers.

For me, it is my River of Grace. Because a river is an ever-flowing body of water, that both draws from many sources (is not a singular entity) and pours itself into (nourishing) many other bodies of water. Rivers are not stagnant, they are an ever-changing and evolving path through life. And water is our life’s breath; we cannot survive without it and 2/3rds of our bodies are made of it.

My River is a well that never runs dry. Yet, it is my responsibility to drink from it, to pull from it to renew my spirit when it is lagging.

Which brings me to the Grace part. I think of grace as a gift. As the ability to look for the light in a sea of darkness. To see beauty and gratitude, no matter what the situation. To ask “what’s my next step” instead of getting stuck on the repetitive refrain of “why?!?”

And then I decide to look up the official definition: Grace: “unmerited divine assistance given humans for their regeneration” (Meriam-Webster). To merit something, is to earn it. You don’t need to do anything to earn, or to deserve, grace. It’s there for all of us. A gift from beyond ourselves, to regenerate the mind, body and spirit.

We have all experienced unexplained loss, devastating, mind-numbing losses. We have all had to endure unnecessary pain, physical, emotional and/or metal. Or had to witness, powerless, as a loved one is faced these. We have all encountered enumerable challenges, obstacles and sudden change.

These experiences are what define us. It is what has defined me.

But I have also chosen not to have them be the all of me. They are one part of my story. They are U-turns on the path of my life. And instead of sitting down in the middle of the road and stopping, staring befuddled behind, below, and around me. I’ve decided to look straight ahead. To tap into my River of Grace and chart a new course.

This attitude has carried me and allowed me to see my life as full of opportunities. To say, “What next.” Instead allowing myself to feel victimized, always the punchline, left lamenting the “why?”

Think of one area in your life where you can flip your knee-jerk response of “why?” on its head. Start small. See how this one shift in attitude affects your whole day. Your whole week. Your attitude and out-look on the things that come next.

And if you already embrace an attitude of “what next,” please share your experiences so that they may inspire and encourage others!

Dear Life…

Dear Life,

You have been unpredictable and you always keep me on my toes.

At times, I even dream of trading you in for a newer, shinier model.

I can develop “life envy” when comparing mine to others around me.

Sometimes I want to scream, “What the heck is the meaning of all this?”
“What is the purpose of living a Life such as the one I’ve been given?!”

But, in the end, I always come back to the same answer…

THIS is My Life and I wouldn’t trade it.

I wouldn’t want it taken away from me.

I wouldn’t want to be robbed of the chance to live it.

And, then, Life, you’ll throw me another curve ball.
Like the one that was lobbed at me yesterday…

“Time for another emergency surgery,” Life reminds me with the insistent alarm that keeps going off in my side. This time, the snooze button does nothing to delay this scheduled appointment with My Life.

And I am reminded, “Tam, just because this is the hand Life has dealt you, doesn’t mean you have to play it alone!”

So I reach out to others.

Some surround me instantly with Love and Support.

Some even put their own Lives’ on hold for a bit, to help me navigate mine.

But I also discover that many, the ones I most need and crave right now, are so used to Tam’s Life, that this is just another regular ol’ occurrence for her.

No need to worry. Don’t be alarmed. We’ll just go on with our Lives and pretend that everything is just fine.

And they’re right, I am used to a different quality of Life than most.I have had to catch these fast balls many previous times.
And in the end, I’ve always come back swinging, “Watcha got next for me Life? Huh? Huh?!”

But, what if this is The End, Life?

What if I’ve already played out my 9 Lives?

Just because I’ve gone through this before, doesn’t mean I, too, don’t battle the arch-nemeses of Life; Fear, Anger, Hurt, Insecurity, and Loneliness.

If anyone else in my circle of family and friends was facing a similar uncertain future, we would all drop everything to be by their sides, to Fight for their Lives.

Yesterday, when I was signing my release for surgery, the surgeon was going over the four long lines of possible (and many, probable) risk factors involved with this procedure. The last two were: “Heart Attack” and “Death.” And you know what he said, Life? “Well, you’ve already had both of those, so you know the risks involved with these complications.” Chuckle. Chuckle.

BOTH of those? Meaning “death,” too.
And, you know what, he’s right.
Because I have not only met my Life, I have also met my Death. Twice.

So, is this supposed to make me feel less scared?
Because it doesn’t.

Yet, when I inform my closest loved ones of this impending, very serious and complicated surgery, happening in just 2 days’ time, they respond, “Okay.”

Okay? Isn’t that what you say when you let someone know you have to reschedule lunch because you’re having a tooth filled?

But, that just highlights how insanely crazy You are, Life. So insane, that insanity begins to appear as normalcy.

And, yet, I still wouldn’t trade you in.

I want to keep living you, Life.

I still have uncharted parts of myself and the world that I want to explore.

I still have so much love, light and energy to give to others.

And I still have a great big capacity to receive that love back.

As I write you this letter, I sit outside in the waxing and waning sun. Watching as it plays hide-n-seek with the clouds. I listen to the one of a kind bird song symphony, never to be repeated at any other time nor in any other place. A unique crescendo of my backyard birds, a concert for one.

I listen to the traffic coming and going on the expressway behind my house. And I dream of where they are headed. I dream of where I next want to go.

I can feel the soothing, loving presence of my husband as he gets ready inside. The one person who has born witness to the all of you, My Life. And never takes for granted the extreme pressure I am under…

I am constantly pushing you up hill. But, I am up for the battle.

I do not planning on meeting your shadow self, Death, again for a long time to come.

But, I also know it is not solely up to me.

So I’ll make a deal with you, Life…
Don’t give up on me and I won’t give up on you.

Love,
Tamara
aka: HopeSpirit

Listening To That Intuitive Knowing

So, you keep telling the doctor, “Something’s wrong.” And the doctor responds, “I just don’t see anything conclusive on your tests. It’s probably just… referred pain/muscle pain/arthritis/ adhesions (scar tissue), etc. etc.” And you say, once again, “No. Something is wrong. The pain is intense at times, and it’s different than the myriad of regular pains I deal with every day.” “Hmmm. Well nothing I can pinpoint. Sounds like intermittent constipation” But you know. You live in this body every day. You are not malingering or unnecessarily complaining. Yet this very judgment often keeps you from going to the doctor until the situation is unbearable. You know about accepting every day pain that many others don’t deal with. This is different.

So you’re faced with either: letting the doctors wormhole their way into your brain, making you question your intuitive sense. You may start think, “Well, I guess I may be overreacting. The doctors know best right?” But, there is that small insistent voice that grows more and more persistent, “Don’t let the doctors question yourself! You know your body better than anyone else! Every time you’ve said something ‘bigger’ is going on, you’ve been right!” Time for option #2: putting on your “Self-Advocate Hat” and getting to work. Be the squeaky wheel. Not allowing yourself to be a push-over. Keep insisting on further tests until you uncover the true source of your pain.

So you push and you push and lo and behold, there IS something wrong! Alas, something pretty majorly wrong. And now you start to think, “Hmm. I don’t know if I wanted to be right after all! Maybe denial wasn’t such a bad place.” Because now reality is smacking you straight upside the head. This pain will no longer be ignored!

This is the story that most recently played out in my life. I have had an intermittent pain in my upper right abdomen, right below my rib cage. At times it doubles me over, almost knocking the wind right out of me. But then it will quiet down, and I wouldn’t hear from it for a while. Starting about 6 weeks ago, it would no longer be ignored; the persistent and at times intense pain demanded attention. Hence began the above journey.

I started to question my own intuitive sense. I started to acquiesce to someone else’s opinion about my body. I almost didn’t seek out additional evaluations because I didn’t want to appear as someone who over-reacts.

Where does this irrational fear come from? I know I am not alone in this experience. A dear friend recently encountered similar resistance when she was sent to the ED to get treatment for an urgent condition. Hearing just one voice naysay her doctor’s advice was enough to make her shut down. Enough for her to push on, to work beyond what she should of being doing in her current state. Enough to keep her from calling the doctor when her symptoms flared again.

And I am intimately familiar with this self-conscious resistance. The advice I would so freely give to another, the concern I would have if they were experiencing similar symptoms, the nudging I would provide to encourage them to call a doctor asap… are all compassionate techniques I seem to reserve for others. Not for myself, heaven forbid!

Why is that?

Why do we joke that men will never let their ego stop and ask for directions, when we, females, are just as guilty when it comes for asking for help with our physical bodies?

This stoicism doesn’t serve us. It inhibits are well-being and our ability to fully be there for others. And most often, the end result is an exacerbation of the (physical or mental) situation, because we did not seek help or treatment in a timely manner… we blatantly ignored our intuitive voice.

And all of this is reinforced by society. How many stories have we heard of doctor’s dismissing women’s chest pains when they go to the ED, being told,:”you’re too young/the wrong sex/ too healthy to be having a heart attack… must just be indigestion.” Even in the face of irrefutable studies showing that heart disease is the number one killer of women!

I have already had a near-death experience (truly) due to listening to a doctor tell me that there was nothing wrong… again, the phone diagnosis was that I was constipated (what’s up with that?) and just needed to take a walk. When, in fact, my colon had ruptured and I was septic… and dying.

I now know what is happening inside my body. And I know when something is awry. Now I just need to trust myself. And, even when it is challenging, be my own advocate… push, push, push until I get the care I need.

So, here I am, today, waiting on an appointment with my surgeon on Tuesday to discuss removing my gall bladder. That pain that was “just constipation”… is in fact a large gallstone that appears to be also effecting my liver (hence the lovely cankles I have been sporting as of late!). And if I hadn’t insisted that the doctors keep looking, I would have found myself much worse off. Of course, I am not thrilled that there is something so serious going on. But with knowledge, comes power. Now that I know the source of my pain, I can focus on the treatment for my pain.

I encourage you to take a few quiet moments today and “listen” to your body.

Is there anything that has been lingering, nagging at you mind, that you’ve left unattended? Is it time to ask the doctor about that pain/ache/different sensation or symptom?

Have you held back from telling others how you are really feeling for fear of being judged?

Are you experiencing anxiety, worry, stress, sadness that you are trying to keep bottled up inside?

Or perhaps, it’s something more positive, but just as secretive. A voice in your heart that sings the song of your dreams… a wish left unfulfilled for fear of disappointing or stressing others; of taking time to feed your own needs for once instead of everyone else’s?

What are these intuitive thoughts telling you?

Do NOT ignore them.

They are the essence of your being.
And they are meant to be listened to… by yourself and others!

On Behalf of All the Un-Mothers…

Today is the day we celebrate motherhood. And rightfully so, for none of us would be walking this planet without first being safely ensconced in a mother’s womb (and for many, loved and guided for many years post). But for us “un-mothers,” it is also a glaring day-long reminder of our own inadequacies to “do as nature intended,” of hopes dashed, and wishes left unfulfilled… of pure emptiness.

Social decorum keeps my hand hovering above the keypad, afraid to strike these thoughts into permanent notes, and then, the gall, to actually share them out loud. But I also know that I am not alone. And for far too long, I have kept this secret locked away in the closet of my broken-heart.

For many of us with chronic illness, the “simple” act of creating a child is not an option. And for me, it goes beyond even the possibility of infertility treatments to the extreme notion that I have been directed not to ever, ever, ever get pregnant… if I do, I will most likely die.

And yet, I still yearn. The pull to have a child is so strong that I have actually considered blatantly risking my own life to do so. And, yes, I know all the other options: adoption, surrogacy, fostering. I am not opposed to a single one, and actually openly embrace these alternative paths to motherhood. But although anyone can conceive a child (and I mean anyone), to raise a child of someone else’s conception requires large amounts of money and assurances of physical and mental stability for life.

I don’t know anyone who can truthfully assure that, when the future is always unknown. But when you start with the big stamp of “high risk” at the top of your application, you are already climbing up a steep, long and windy hill.

So here I am with a biological clock ticking so loudly it keeps me up at night. And an ache deep in my abdomen that will never be filled.

No one will ever wake me this day with breakfast in bed or flowers and a card.

I will not receive homemade gifts from child care and school… lopsided clay pen holders, tiny plaster handprints frozen in time to hang and admire, Fimo critters that only a child could confidently declare their species, scrambled eggs made with love and drops of crunchy shell, colored t-shirts declaring my child’s never-ending love for me, “MOM is” poems… all the treasure stored more carefully than the priciest of valuables.

I won’t receive spontaneous “Mom you’re the best” and “never leave me, okay?” knee-wrapped hugs.

I will get teary at the month long pull at your heart strings Hallmark commercials not because I am anticipating an equally endearing card from my own child, but because I will never have a chance to experience that intimate moment.

There will be no teenage eye-rolls at my nerdy antics that eventually becoming endearing inside jokes as my child becomes an adult and my best friend.

There will be no one there to take care of me when I am old and frail. To tell me deepest secrets to. Instead of being an elder blessing I will be a burden to some second in line relative.

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Friends and family comfort me with the fact that I have a nephew that loves me, that children gravitate towards me, that I spent years working with and providing stable beginnings for hundreds of young children. All true.

I used to joke when asked in my twenties as a director of an Early Childhood Center, “do you have any children? You’re so good with kids!”… “Why, yes, I have 135 of them!” It was comical then, because I was so sure that I would have my own soon and until then, the 135 smiling faces each day fulfilled my motherly instincts.

I always knew I would be a mother. My friends would question this calling and often put finding the perfect man, having a McMansion or a high paying job above having a child. Not me. And then, lucky me (truly), I found my soul mate at 19 and he shared in my passionate dream of having children.

We’ve had the names picked out since we were 25. There was never a question in my mind that this was a part of our American Dream. We could not imagine any different outcome. We even knew that if we couldn’t have a child biologically, we’d adopt. It was just that simple.

But that’s the funny thing about life. It doesn’t always work out the way you’ve planned. And in the last 10 years, this has been more often the case than the “everything works out in the end” scenario.
Not having children is one area I haven’t been able to positively flip on its head, discovering the true purpose behind the tragedy. If anything, I can find gratitude in the fact that I did not have a child just before I became seriously ill. For that child would have grown up with a sick, unavailable mother for the first 10 years. But, I also know, I would have always had an endless supply of love.

A friend told me that if I had a child, I wouldn’t be able to be there as the loving support for all the other people in my life, as I am now. That perhaps my future is in helping and nurturing my peers (all the grown “lost-children”) instead of having a child of my own. Perhaps.

All I know is this ache isn’t going away. Sometimes I think it’s even growing stronger. I still dream of the magical stork from above bringing a child in need into my life, into my loving arms.

My arms will always be open for that far-out possibility.

Until then, I honor and celebrate all the un-mothers out there. You are not alone! Perhaps it’s time for us to petition for a Hallmark holiday of our own?! Until then, wrap yourself in loving comfort today… and don’t feel a bit of guilt for carving out some time just for yourself.

 

 

“What Goes Up Must Come Down”

“What goes up, must come down.” These lyrics keep dancing around (banging around?) in my head.  They seem to be the only thing that accurately describes my current state of being. And let’s face it, my life in general.

Once again, the rug has been pulled out from under me. I felt like my life was traveling in an upward momentum. With starts and stops along the way, of course. But, truly could I expect anything less? Still, generally moving in a positive direction.

After such a struggle throughout the fall, with a constantly flaring body unresponsive to current courses of treatment, unrelenting fatigue, and an onslaught of back and forth calls to insurance pleading my case, there was finally some light at the end of the tunnel: infusion treatments were finally approved, literally in the 11^th hour.

I began my Simponi Aria infusions around Christmas and experienced immediate improvement in my symptoms. My morning stiffness went from 3 hours to 2 and even onto a mere 1 many days!! My fatigue was abating and I was able to participate in multiple family gatherings without weeks of post-event “crash and burn.” It was a gift. It was a miracle!

I anxiously awaited my second infusion and experienced similar success, even a tad better this time!  “We may have finally found something that treats my autoimmune illness,” my heat sang with glee!

Visions of days without pain coupled with participating in, instead of just sideline observing my life danced in my head! I even allowed myself to daydream about a future of renewed productivity and purposefulness.

In the last couple of weeks, my body started to crash again (hence the lack of blog posts); locking, swollen joints, pain and fatigue. But this time, I was happy for the symptoms. Strange, I know. But they were clear indicators that the infusion indeed was working because I was on a downward trend heading right into my next scheduled infusion…

This Monday! Hooray!! I can’t wait! Bring on the relief!

But, then, remember the second half of my opening refrain? …

“…Must come down…”

And, come down it has. Crashing down.

Today, was my first follow-up with my rheumatologist since the start of the new infusion treatments.  I gave him the same low-down I just gave you. And he looked sad. Defeated.

“Has the billing office contacted you?” he tentatively begins.

“Guess they’re leaving it up to me to be the Bad Guy.”

What? What is he trying to say?! My heart begins to sink. Am I hearing this right?

Both Medicare and my (supposedly “super-duper”) private secondary insurance suddenly decided to retroactively decline my treatment.

“Its off-label,” they tsk. Tsk.

Well guess what numnuts?! EVERY medication I take is off-label.   I have a RARE disease that does not get studied because it is not profitable for the drug companies whom sponsor said studies. Never mind, that my disease, Relapsing Polychondritis, has an extremely high mortality rate in untreated cases (before discovery, most people were diagnosed post-mortem). Guess they don’t care when it’s only a 1000 people in the U.S. population.

So, now, not only have they denied any future treatments, they have also reneged on payments due for treatments already administered! That’s 2 infusions at the “cut-rate” price of $10,000!!! How can that even be ethical?

Doctor: “Legally, you could be held financially responsible for this amount. Ethically, I could never allow that to happen. And, we could continue treatments if you have a bunch of cash lying around to pay out of pocket.” Wry smile.

Full disclosure here: I just did our taxes and guess what? My husband and I currently bring in a combined annual income of a whopping $33,000! So, yeah, I don’t think so.

So, bottom line… it appears that insurance (or let’s face it, in this case, the government), feels it is more cost effective to keep me chronically ill (meaning more urgent care costs, hospitalizations and the such, in the future) and unable to have gainful employment (requiring on-going SSD payments), then to pay for a medications that will treat my disease (now) and prevent the progression of it.

What kind of upside-down world do we live in?

But, guess what? The ball has once again landed back in my court.  And what choice do I have but to evolve and adapt once again? To reassess life and the options it presents me, to pick up the pieces and try to build something worthwhile out of the rubble…

And I will.

But, for a short bit, I just want to have a pity-party.

To whine, “why can’t anything ever be easy, or at least simple, for me?!”

Because it just is NOT.

There must be some major life lessons I’m supposed to learn this lifetime around.

They say that when you pray for something, God doesn’t give it to you, he (she) gives you an opportunity to develop that skill. But did I really need another chance to practice Acceptance. Resilience. Inner Strength?

It feels like I have enough of that to fill 10 lifetimes.

Sigh.