Tag Archive | relapsing polychondritis

National Rare Disease Day: Effects Us All

rare disease

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)

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!

Calling All Angels

AngelPositiveThinkingGuardian

Just over three weeks ago, I had emergency surgery to remove a non-functioning gallbladder (another “perk” of Polychondritis, my main autoimmune disease. Yea!). My husband couldn’t help but announce repeatedly that this was now my 15th surgery in 7 years’ time(!).

The surgery went fairly well as did my initial recovery. After re-learning to walk post a 5 day epidural (I swear, I now know what Bambi feels like on those wobbly legs!), I was happily released.

After my 10 day hospital stay, I was only home for 3 days, when I suddenly developed a hot, sharp and stabbing pain in my abdomen. A same-day CT scan showed a very large small bowel obstruction and I was promptly sent to the ED, to await transfer to the inpatient unit.

This time, my stay was Hell.

It began with the placement of a nasal-gastric (NG) tube. I have always said this is the worst procedure I’ve ever undergone (and that’s saying a lot, considering all I’ve been through!). But this time was even worse. The main disease process of Polychondritis is the destruction of cartilage in my body, most prominently in my chest, ears, and nose. I already knew that the cartilage damage in my right nostril was so pronounced, it was effectively “closed for business.” And I clearly stated to the attending surgeon that only a pediatric sized tube would fit in my left nostril. Yet, she insisted in trying larger sizes first.

The doctor quickly learned that I knew my nose better than her, and had to use the smallest tube possible. Now, I don’t know a single person that feels “okay” about having an NG tube placed, so surgeons are used to complaints regarding this procedure. What they didn’t take into account was my personal history. The pain was beyond excruciating. The only way I can think of describing it is; it felt like someone had first taken a hammer to my nose, shattering the bones, and then commenced to insert (shove) a tube up my nostril, while asking me to drink water through a straw, drawing the tube down my throat and into my stomach.

This was the first time I felt “my light” go out. I felt like my Soul Beacon had been 1-blown-out-candle-michal-boubinsnuffed. I was drowning in pain and couldn’t tell the surface from the bottom.

My husband bore witness to this, and stated later that he saw the moment I let go. The moment my eyes went dull and blank. I would have done anything to make the pain stop. I was ready to trade my life for this relief.

Having these very deep visceral feelings scared the heck out of me. I started to question whether I had the strength to continue this battle being waged inside my body, with no foreseeable end. Slowly I began to fight again, to refuel my Soul Beacon from the exchange of light, love and energy with others. But I still felt dim; like my light could once again blow out with the slightest of breezes.

That breeze came a few days later when my body started to shut down. I had uncontrollable shakes, deep abdominal pain, unrelenting migraines, and spasms traveling from head to foot. I couldn’t focus on anything. There were none of my normal reprieves of drawing or writing, or reading, or even watching T.V. All I could do was lie there, writhing in agony.

I felt myself slipping away. It felt like I had one foot in this world and one in the realm beyond. One breathe from the universe, and I would blow away. Forever.

Without words, my family could tell. My husband and mother put up a barricade around me, keeping visitors away, while silently standing guard. They didn’t complain of hours spent entertaining themselves while I slipped in and out of consciousness.

And then one day, a dear friend of mine showed up unexpectedly for a visit. I whispered a request for Reiki. And while sending me healing energy, she also received messages in return:

angel of light 2She leaned close to me and told me that everything was going to turn out the way it was supposed to; that I could let go (and let God, so to speak). Then she passed on the most remarkable message: “As I have told you before, you are surrounded by angels, spirit guides and light beings that love and protect you. But this time, I felt something even deeper. There is one angel that has wrapped themselves around your entire body. They are protecting you and encasing you in love. They are only waiting for you to call on them for help and support. Use this angel. Ask for their guidance and protection.”

And with that, she left.

I was overwhelmed. If I let go, would that be letting go of this body, of this lifetime? Or would the act of letting go release the tension and stress I felt over having to “keep up the fight?” Could I truly trust in my angels and guides to take care of me, to lead me in whatever direction the Universe had planned for me?

I chose the latter, to trust in this intuitive message my friend passed on. It took me a bit to even find the strength to ask for help. But eventually I did. And that’s when the miracles started to happen.

The nurses discovered that my sugars had dropped so low, I was partially going into diabetic shock. And after several bags of sugar water being pumped into me, I started to recover. Another nurse ordered me an air bed that softy pillowed my inflamed joints. And the doctors finally reinstated my medication regimen that treats my autoimmune conditions (stopped out of fear of effecting the recovery rate post-surgery), most significantly providing infusions of steroids. My body started responding in kind.

But, even more remarkably: I embraced my angel back. I called on the energies that swirled around me for support and protection. And I began to feel like I was wrapped in a quilt of love. A quilt that hugs my body, wherever I go.

I don’t think it matters what your particular religious or non-religious beliefs are. Words like “angels,” “spirit guides,” and even “God,” don’t need to be defined. They can mean something entirely different for each person. For me, they all come down to energy. I don’t believe that when we die, all of ourselves just disappear. We are made up of many charged particles. So our physical bodies may fail us and be sent back to the Earth (to be recycled and revived), but our energy, or our “soul,” stays active. For some, they may find comfort in the idea of Heaven. For me, I truly don’t know. But I do know that I have felt the energy of loved ones passed surround me at many moments in my life. They have sustained me, they have pushed me, and they have caught me when I’ve stumbled. But, most of all, they have saved me. They brought me back from the brink of death 7 years ago, when my colon first ruptured. And they brought me back this time, when my mind and body was too fatigued to continue the fight on its own.

And that’s the key: even when we feel alone, we are not. We don’t have to face life’s challenges all by ourselves. Each one of us has an army of angels, light beings, and spirit guides just waiting to be called upon.

All it takes is a little prayer or meditation. Picture yourself surrounded with light and love. Feel the energy of the universe travel from without to within and out again. We are not stagnant beings, each one of us has a River of Grace flowing with our life force within us. Some believe this river is fed by God, others Buddha or Allah, or a Higher Power. For me, it is not an entity I can name. I choose to call my source God. But my God is not an omnipotent being, it is a mass of swirling light and energy that flows around all of us. Most often, my God wears skin, as a messenger of hope.

Each day I pray to have my eyes, ears, heart and soul open to receiving the gifts and messages from God and the Universe. This way I don’t miss the miracles when they come my way.

Because of this practice, I was able to see God in the form of my friend’s words as she asked me to trust in and use my Guardian Angel.

And even a skeptic cannot argue with the outcome. Because here I am just one week later, at home and recovering, with the energy to share my story with you.

Will I be able to weather another wave of physical assault on my already ailing body? I don’t know. But, that’s the key; I don’t have to know. All I have to do is trust in the universe to provide for me, whatever comes my way. My goal is to spread this message of hope and faith to others, so that collectively, we have the energy to face life’s challenges.

What challenges are you facing today that you could call on your angels or guides to help you navigate? All it takes is closing your eyes, taking a couple of deep cleansing breaths, and then, just… asking.
What have you got to lose by trying?!

angel guardian 2

“What Goes Up Must Come Down”

tear

“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 11th 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.

Fluent in the “Language of Pain”

Pain and wisdom

A recent article in U.S.A. Today discussed the “health care crisis” of chronic pain, stating that 40% of Americans now experience chronic pain… 40%!  Just think about that for a moment.  Thankfully, research institutes are also finally paying attention to this startling statistic and studying ways to treat this epidemic.

What stood out most to me in the article is the description of what happens to a being when they experience unrelenting pain.  We learn to become fluent in the Language of Pain.  It’s the old “practice makes perfect” adage. But in this case, it is completely unhelpful.

Our bodies and minds are wired to learn new habits and behaviors through repetition.  The article states:

“In a sense, chronic pain is not all that different from learning to play the piano or speak French.  The more the body ‘practices’ processing pain, the better it gets at it and the stronger the connections between nerves becomes.”

It speaks of a term, us chronically ill are all too familiar with, “allodynia.”   Allodynia is when pain sensations are so out of proportion with the reality that even the slightest breeze on the skin, gentlest of hugs, or softest touch of a feather, can feel like scalding water, the burn of a blowtorch, or thousands of needles stinging the skin all at once.  This can be a very frustrating condition to explain to “non-sufferers.”  How do you tell someone, “I’m sorry, but your hug hurts me,” without hurting their feelings?!

Chronic pain is defined as pain lasting 6 months or more.  It can be triggered by illness, but also by post-surgical pain that doesn’t go away, injury (even after it is technically “healed”), aggressive medical treatments (especially those for cancer), and chronic conditions such as arthritis, back pain and headaches.

Chronic pain effects 100 million Americans and costs between $560-635 billion dollars per year, yet doctors only receive 9 hours on average of pain education during their entire medical school education!

One of the sacriest facts is that it causes permanent damage to the body.  Chronic pain can literally shrink the brain.  It can reduce gray matter as much as 20 years of aging does!! (according to research at Northwestern University)

The biggest enigma of the pain puzzle for me, is the incongruity of my own personal pain responses.  I actually have an extremely high tolerance for pain when it comes to injury, injections, and other invasive procedures.  And then there’s the flip side… my body can be triggered by God knows what (I always equate it to having a switched flipped). When this happens, I am writhing in pain, the touch of the lightest sheet on my body can trigger what feels like an attack on my body… my nervous system is on fire.  I would sell my soul to the devil to make it stop!

Hence the pain conundrum!

And also the reason why scientists state that suicide rates are twice as high in people with chronic pain.  Chronic pain is highly unpredictable and volatile.  And, currently, extremely mistreated and misunderstood.

Although, they are starting to discover that there are several non-invasive, non-drug treatment options for “quieting the pain.”  I have found many of these helpful (when I remember to employ them!) and I would be interested to hear what techniques others use to treat this painful condition.

  1. Exercise:  This can be the hardest to start because when we are in the midst of pain, our minds tell us to be still; we are terrified that if we move, it will only get worse.  But this is the exact opposite from the truth. The USA Today article states, “Exercise is as close as there is to a magic bullet for pain.” Hazzah!  I think of it as re-training the nerves, muscles and brain (just as it has been conditioned to feel pain at every turn).  I started riding my exercise bike daily 2 months back and it has changed my life.  Now when I am having a particularly bad flare of pain, my body actually “tells” me to get on my bike and move. And it works! Truly. NOTE: It may be helpful to begin a exercise program in a warm pool.
  2. Acupuncture: Once dismissed as little more than a “placebo effect,” newer studies in (objective) mice show that acupuncture stimulates adenosine, a powerful pain reliever made naturally in the body.  And studies in humans are showing that after acupuncture, there are powerful changes that occur in the nerve pathways, running from the brain to the rest of the body (an important way the nervous system can control pain). Has anyone had success with this?
  3. Massage: I swear by this! I see my massage therapist every 2-3 weeks and she has changed my body’s response to painful stimuli. My recommendation would be to find someone trained in therapeutic/medical massage that will work long term with you; make sure it is someone you can clearly communicate with. When I first started, my therapist could only “rock” parts of my body until I got used to touch. Now, even when my body is “on-fire,” it responds positively to her touch; she quiets the hyper-active nerves. There is no one else I would trust to touch me.
  4. Cognitive Behavior Therapy, Meditation and Bio-Feedback:  All treatments that use the mind to quiet the body.  I use guided meditations daily and can now almost “leave my physical body” when it is in pain (not always, but often). I know people who have had success with formal bio-feedback training and EFT (Emotional Freedom Technique or Tapping Therapy).

There are other treatment options, not scientifically proven, but people have found comfort with:

  1. Chiropractic Care
  2. Magnet Therapy
  3. Reiki
  4. Heat Therapy
  5. Hydrotherapy
  6. Electrical Stimulation (TENS units)
  7. Ultrasound
  8. And what I like to call: “Distraction Therapy:” engaging the mind in another activity (something simple and repetitive like knitting, coloring, zentangles, bead stringing, crosswords or puzzle books, music, silly kitten videos!, etc.), until the pain becomes distanced from your physical body. This works wonders for me!

Please share your pain coping techniques, so that we can all benefit from the shared experience of this “painful” condition (pun intended!).

If you are interested in reading the full article, follow this link:

Chronic Pain: A Health Care Crisis

Also, here is a link to the American Chronic Pain Association:

ACPA

Don’t Give Up 5 Minutes Before the Miracle Happens

everything-is-a-miracle

There is a catchy little saying, “Don’t give up 5 minutes before the miracle happens.”  There are times when this concept seems plausible. And yet others, when those five minutes feel like they won’t come for five years, if at all.  Last week was one of those “other times!”  But, I forgot while in the throes of anxiety, stress, worry, fear, and pain that miracles come in all shapes in sizes; that their messengers come wearing a variety of colors and cloaks.

Since August, life has been lobbing one curve ball after another our way.  Starting two and a half weeks ago, it was like the pitching machine got stuck; the balls were coming at such a high speed pace, from all different directions, there was no chance of catching one before the next one flew at my face.  And when all your time is spent juggling the balls of life, the mind is too exhausted to even comprehend the possibility of a miracle.

I knew this would make me blind to any miracle that happened, and I didn’t want to miss a one.  So I started my daily gratitude list, marking ways that “grace” had shown itself in my life.  Many days it was like pulling teeth trying to write down just three things I was grateful for that day!  This started to depress me even more.  I’m not saying the exercise didn’t help to “right size” me on many days; that is, put things into perspective.   But it’s also been awhile since I’ve struggled for so long, each and every day.

I really felt like there was no light at the end of the tunnel.  My weeks were filled with a constant onslaught of medical stressors: five days(!!) of bowel prep for a virtual colonoscopy that discovered a suspicious polyp; a fitting for “absolutely necessary” orthotics that were costing me a mere $500 (no insurance coverage); my autoimmune disease (Polychondritis) that flared in every joint, tendon, and muscle in my body; asthma attacks for the first time in a long time, waking me at night “suffocating”; a subsequent visit to my rheumatologist where he was so concerned he almost increased my Prednisone (IE: steroids- oh, no!) but instead decided to put me on Remicade infusions (half day long treatments that are the strongest this class of medicines gets); the start-up of another “hemicrania continuum” (IE: daily, mind-splitting migraines, unresponsive to treatment); 20+ Botox injections in my head and neck for same (that felt like a barrage of wasp stings and triggered an increase in pain – ouch); a “suspicious” mole removal on my back after early years of over-sun exposure (and a subsequent wound that is not healing);  and lower back and hip steroid injections (never fun!)…

Phew! I am exhausted just writing that all down!

And, the stressors didn’t stop there.  Not only was my disease flared by the change in seasons, but so was my husband’s depression; resulting in daily anxiety attacks (many directed at me. Sigh.).  Several friends experienced emotional crisis during this period, and I was the friend they reached out to for support.  Our cat got sick and needed medical care.  Bills seemed to be landing in the mail daily at the rate of political flyers in November.  And the final straw? Our van, our only vehicle, died.  The frame rusted out and landed on the steering box, and, well… you can imagine the rest!

The fear started to set in.  What are we going to do?  How are we going to afford this?  What if we don’t qualify for a loan?

Then, I took a deep breathe, prayed to my higher power, and took the first step.  Information is power.  And, at that point, I had none.  All I had was mis-information that was swirling itself into a cyclone of worry and anxiety.  Not a good equation for an already over-stressed body and mind!

It got worse before it got better.  But, then, last Tuesday, the miracles began to happen.  And because I had “slogged” through those daily gratitude lists, I was able to see them, and appreciate them as they occurred.  After a few unsavory experiences with used car dealerships, we walked into a particular store and were warmly greeted.  For the first time, I felt like each person looked as us as just another human.  We were paired with a gentle soul from Nigeria whom had worked at this same location for 20 years and took deep pride in his work.  He was not paid on commission and spent hours working with us, never feeling harried or put-out.  He not only helped us find our dream vehicle, he figured out a way that we could afford it.  He gave us free credit-counseling advice, outlining a 3-5 year plan to establish credit (we are a one credit card family; a negative in today’s consumerism America!).   Then my mom stepped in to selflessly lend her name, backing our credit for the bank, so that we would get an interest rate under %5.

Friends graciously lent cars and emotional support.  We had some small gifts of “unexpected funds” come our way.  And yesterday I got news that my mole was benign. Thank, God!

And, I realized, after weeks of “getting by,” we were gifted a day of reprieve and then another.  And that this is the true miracle of life.  This new vehicle and all the angels who helped us to get here didn’t suddenly erase the physical and mental pain we are experiencing.  But it gave us Hope.  And hope is what gets us through the unbearable days. 

At some point, life lets up.  The miracle happens.  We just have to keep our minds, eyes, and hearts open to witnessing it.

Don’t give up.  You never know when your 5 minutes will arrive!

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!