Tag Archive | migraines

When Your Resilience Is Tested

Churchill going thr hell quote When your resilience is tested, where do you go? Who do you turn to? What well do you draw from?

There are times when life pushes back one too many times, and I think, “I Just Can’t Do This Anymore!” And… yet, I do. I keep getting back up and taking steps forward – even if they’re itty, bitty baby steps.

Do we all have resilience in reserve? And, if so, is it something we are born with?: Each of us granted a certain set amount of resilience from the universe. And when the well runs dry… well, the well runs dry. There is no overdraft protection on this account.

Or- is it more than that? A bank that receives deposits as much as it gives us the power to withdraw? Think of it like this: every time we experience a stumble in life, yet find the skills, tools and support to get back up and keep going, we remind our soul, the core of our existence, that we have the power, the determination, the inner strength – – the resilience to face the most difficult of circumstances and survive.  We deposit these resilient memories into our mind’s bank.

And “survival” isn’t always “pretty.” In fact, it can be pretty darn painful. Often, we come out of the experience sporting battle scars- – both the kinds that can be seen and the unseen variety.

I used to look at the criss-crossing roadmap that now constitutes me belly and feel pride. Each mark was another war wound – – a battle I had faced and conquered. For just the fact that I am alive today to tell of it = success. I need to remind myself of my Inner Warrior now and again.

Which brings me back to this Resilience Bank. Every memory, experience and story of survival adds to my well.

Personally, I think it is a combination: each of us is born with a certain amount of Resilience Reserve. Some of us may be granted more than others. Or, perhaps, we’re all granted the same amount, it’s just that each of us perceives this well differently. A half-full vs. half-empty kind of mentality. But that doesn’t change the fact that it’s there, for each and every one of us. It’s what we do with it that matters.

As the old adage goes: “It doesn’t matter what happens to us in life, it matter how we react to it.”

“We are naturally resilient. We have the capacity for growth and positive adaption in spite of the constant barrrage of stress we all feel on a daily basis.” (excerpt from The Resilence Scale webpage).  Test your “Resilience Score” HERE.

But the most interesting and complexing thing about resilience is the stark fact that we actually have to experience strife and hardship in order to build it.

Think about that for a moment.

It worries me that we are so concerned with young children feeling worthy and successful, that we actually shield them from failure. The exact thing that creates self-reliance. Aren’t we actually doing a disservice to this younger generation?

Think back to some of the most monumental building blocks of your youth. Many of them are uncomfortable to relive. But, at the same time, they are also the experiences that shaped us and helped us to learn integrity, cooperation, self-reliance, perseverance, and resilience. We had to learn how to handle failure such as our team losing a game, or disappointment like when our 6th grade best friend decided to stop talking to us in 7th grade, or determination like when we got a poor grade on our report card because we had slacked off on studying.

Failure builds character. When we rescue loved ones from experiencing, and in turn overcoming, strife, we steal this opportunity from them.

These starts and stumbles of my youth prepared me for the difficult adulthood I’ve had to endure. Because my parents and teachers didn’t rush in to save me, I learned self-coping skills (even if I didn’t see the advantage to this at the time!).

Last Sunday marked the 8 year anniversary of my colon perforation and my first near death experience; the night they told my husband and me that I had a 10% chance of living, and to say our goodbyes.

Today, I have a choice – – I can drown myself in that memory or I can look at it in a different light – – recognizing that albeit these last 8 years have been enormously challenging, I’ve been alive to experience them. I chose not to say goodbye on that fateful night and I continue to make that same choice today.

The last 3 weeks have been some of the most painful in my life. My Trigeminal Nerve is inflamed and Angry- causing shooting pains across my check to my nose to my jaw. The lightest of breezes and gentlest of touches can set it off. Combine that with a continuous cluster migraine that’s like an icepick in the top of my head, and it can be unbearable. Yet, I am bearing it.

Am I scared? Yes. Am I angry? Yes. Am I in excruciating pain? YES. But, I also remember that the fact that I am feeling these big emotions means that I am alive. And if I pause and remember, I can use my past experiences to get through today. 8 years ago I was in more pain than I ever thought possible. And, yet, today, my mind shields me from truly remembering the intensity of that pain. I was drenched in fear then- of the unknown. Of the known. But I soldiered through. The pain passed. The fear passed—and eventually even transformed into hope.

So if I had resilience then, what’s to say I can’t tap into it today? I just need to practice it, nurture it, fill up the well, drop by drop.

Resilience doesn’t mean I’ve discovered some magic button to prevent me from experiencing some future strife (I wish!). And it doesn’t mean I bounce back from hardships unaffected or unchanged. It does mean that I don’t let the fear of these difficult experiences keep me from experiencing life now. It means that I know that in the past, it has passed. Which means, that this too shall pass. I will be okay. I will survive. maya encounter defeats quote

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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

Toeing The Elusive Line of Life

tight_rope_walker_530w

I am always trying to pin down that elusive line between doing too much and not engaging enough.  Dancing just over the edge into the land of “I am going to enjoy this adventure today even though I will ‘pay’ for it later” and standing at safe distance back, “forgoing opportunities for the sake of protecting my body from the ‘over-do’.”

To me this line is LIFE.

And I am not ready to give up on life yet; to fade into the background, observing others from behind my own personal protective observation glass.

Yes, this option ensures a more stable physical state of being. But it doesn’t guarantee it. I am just as likely to experience an unexpected (I was going to say “unplanned for,” but aren’t they all?!) flare of my physical symptoms after days resting “safely” on my couch.

And there is always one thing that suffers from my hesitancy to participate… my emotional well-being.

So it all comes down to another elusive concept: BALANCE.

I don’t think this is a plight just of the chronically ill.  We may suffer more serious consequences for misjudging our abilities to participate, but I know just as many well-bodied friends who also struggle with this.  Their “price” may just look different: stress, fatigue, or loss of time.

As I tiptoe around my Line of Life, I am getting better acquainted with my limits. For me, I know I will pay a steep price, so I weigh my options and choose the ones that are the most appealing and unique. 

I now pause before I make any commitment (I used to “over-commit” to everything for fear of saying no, only to have to constantly cancel at the last minute, frustrating everyone).

I check in with myself- mind, body and spirit.  I take my own set of vitals, so to speak.

And, no matter what my decision is, I try to clearly communicate with the invitee. I think the guidelines I have set up for myself can be applied to a wide range of situations and people.

It usually comes down to three categories:

  1. “I’m sorry, I have to decline this time. But please don’t let this keep you from asking me in the future [big fear=being “forgotten”].  My physical well- or unwell-being is constantly fluctuating.” (insert your limits: time; commitments; family obligations; job stress; etc.).
  2. “If it’s okay, I am going to have to wait and decide nearer to or on the day of.  I’m just not sure how I’ll be feeling from day to day right now and I don’t want to over-commit.”
  3. OR: “I would love to accept! I am planning on being able to participate but if my body takes a down-turn, I may have to change plans at the last minute.  Are you okay with that?”

I have discovered that the honest approach best serves myself and others. Most of us want to “people please” and in doing so can create an environment of always saying “yes,” leading to feelings of stress and resentment later or a constant cycle of saying yes and then having to change our minds/plans.

By giving people an open look into your life, you are showing trust in the relationship.  As well, I try to always give people the option of letting me know if last-minute changes are uncomfortable for them.  Of course I wish everyone could be supremely flexible to my needs. But some cannot. And this is all part of accepting both my and others’ limitations.

You’ll also begin to discover the friends who truly do understand and are willing to adjust the typical “friendship guidelines” to maintain a relationship with you and those that are just “good time friends.” And that’s okay.

The week-end before last was one of those “seize the moment” opportunities for me.  A friend spontaneously invited me on Thursday to accompany her to Pittsburgh, PA for a one-of-a-kind puppet play by Heather Henson (Jim’s daughter- yes, The Muppets’ Jim!). Now, this was a huge risk for me. It was for just one night and would require a minimum drive of 6 hours both ways. Two “no-no’s” in my typical Boundary Box. But sometimes boundaries are meant to be broken, and this was one of those times.

Not only was it an amazing adventure and bonding experience with a dear girlfriend, it provided me a chance to be honest about my chronic illness in a way I have not before.  Traveling that close with some requires intimacy and vulnerability. And I was proud of myself for not hiding behind the mask of, “I’m okay.”

She knew I had to make many rest and stretch stops.  She saw my feet and ankles swell to the size of Nerf balls. She observed my nightly ritual of 20+ medications. She listened to me when I explained the complexity and history of my disease. She witnessed the “sudden coming” of a severe migraine. She saw me grow breathless because of my pericarditis (fluid around the heart) and the necessity of many “sit and rest” periods as we trekked around the city.

She saw the all of me. And she embraced and accepted me as I am.

Yes, I’m paying the steep price of admission still now 7 days post, but I wouldn’t have changed a thing about this experience. Can I always make this choice? No. But I am also not going to let my fears get in the way of considering similar spontaneous opportunities in the future. I used to always live my life this way… seizing crazy last-minute excursions left and right. And I forgot how much I love that.

I forgot what it is like to not only dip my toe over the edge into the Waters of Life, but to plunge head first into the icy chill of the thrill only to come up breathless by embracing the All of Life.

Where are you making choices in your life that serve not only your physical and mental needs, but also your spiritual and emotional needs? Perhaps you aren’t shying away from “frivolous experiences” because of the limitations of an illness, but because you are overwhelmed and stressed by the sheer complexity of living and balancing life, work and family.

Where and when can you throw caution to the wind, even for just an hour, and do something just for the sake of doing it?

Go on… life’s waiting for you!

Poked and Prodded, Jibbed and Jabbed

I realize that during the last three weeks I have been poked, prodded, squished, jabbed, plugged in, dilated, tested and re-tested.  No wonder I feel exhausted!  Since the beginning of 2014, I: have had my annual boob squish (yippee!); underwent cardiac testing; was “shot up” with my second infusion treatment (TNF Inhibitor); had an “invasive” G/I exam and tests; had the pleasure of my eyes being dilated while being chastised for not coming in annually (“you know, you do have a lot of underlying medical conditions that effect eye health”… duh!); got my monthly blood-work completed; was stung with almost 30 Botox injections in my head and neck; and then to top it all off … was submitted to two corticoid-steroid injections in my S-I joint (the hardest to reach=tailbone area) and my hip as well as three trigger point injections in my shoulder area (no numbing meds. with that one=double ouch!!). All in 21 days!

Yet, strangely, this feels normal to me. How weird is that?!

Just last week, a friend was telling me how exhausted she was.  She had just finished a day filled with two medical appointments, a flu shot and DPT shot, as well as some blood work.  And I understood!  Yet it also gave me a deeper perspective on what most able-bodied people find taxing.

And it gave me a great sounding board for helping her to better understand what my daily life is like.  Of course, I didn’t share this with her on the spot.  She had a right to her own exhaustion and some empathy from a caring friend.  Bottom line, isn’t that what we all crave?  But later in the week, I brought up her experience as a starting point…

I asked her to recall how depleted (and violated) she had felt on this day of appointments and tests.  I told her that I, more than most, could 100% relate to her experience.  Then I followed up with, “you know how you felt? Well, just to give you a little perspective, that’s what it is like for me 2-3 times a week, on an average week.”  I saw recognition light up behind her eyes.  And I realized that it is difficult for others to understand how the chronically ill feel on a chronic basis.  We all need a compass point to help guide perspective.

Another dear friend has often said to me, “I imagine how horrific it feels to have the flu.  And then I think of you, and try to imagine what it would feel like to experience that all-over pain and fatigue every. single. day.”  She sometimes follows-up with, “It makes me feel like crying.” Ah, me too.

So I realize these are all good starting points to increase the awareness of our “well-bodied” friends and family.  Our barometer for pain is at a higher set point than most.  We have to be that way in order to survive (and hopefully even thrive, at times!).

But it is also important, if we want to maintain honest integrity with ourselves and others, for us to attempt to explain what this means.  Being chronically ill is… a constant cycle of preparing oneself for upcoming doctor’s appointments and tests.  The emotional roller-coaster is taxing both pre- and post-visit: Is this the day I will get bad news or good news?  Is this the doctor that will have a new idea to help me with my illness(es)?  How many slips for subsequent tests will I leave here clutching today?  Can I even afford to go to the doctor’s today?  How am I going to get there; am I strong enough to drive myself?  Should I have someone with me so I am not the only one hearing the doctor’s words? Is this going to be another appointment with the summation, “I’m just not sure how to help you.” shrug.; Do I even get my hopes up?

Then there is the physical toll. Just getting ready for these appointments can be exhausting; sitting for long periods in the waiting rooms can be even worse.  Waiting in uncomfortable chairs (especially the hard plastic ones in the exam room!), can wreak havoc on a chronically ill body.  Then doctors like to (and, let’s face it, should be) physically examine your body, too.  Herein comes the poking, prodding, jibbing, and jabbing, all igniting flares of various “hot spots.”  Whether it is abdominal pains, muscular and joint pains, neuropathy, etc… we don’t like to be excessively touched!!   And are bodies will let us know this with a snowball effect of all over and hyper-aware pains (allodynia) throughout our bodies for several days after the appointment.

By the time we start to recover, it’s time for the next onslaught!

And, in between all these appointments, we want to live life… and not just inside the walls of hospitals and clinics!

We don’t need your sympathy.  But the next time you are feeling all-over exhaustion from a day at the doctors, an afternoon full of tests, or a bout with a cold or infection, think of us.  And give us empathy and understanding.  That’s all we truly crave.

Thank you.

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!