Open Letter to “Normals:” Please Read

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

Open Letter To Normals,

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

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

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

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

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

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

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

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

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

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

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

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

Chronic, Invisible Illnesses do not forgive.

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

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

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

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

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

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

Thank you for your compassion,

The Invisibly Ill

It All Began With a Beacon of Hope

“I feel this little light inside me.”

“That is your Soul Beacon, my child.”

“A beacon?”

“Exactly.  You carry yours with great brightness.  It is how I found you.”

She sits with this thought for a while, twirling a blade of grass. Looking up shyly, she ventures, “I think I understand.  I can feel this glow inside of me, in the deepest pit of my spirit.  And when I think of this light, I can picture a lantern guiding my way through happy times and sad.  Is this like the light you call my Soul Beacon?”

“Why, yes.  Can you imagine why I think of it as something grand such as a beacon instead of a lantern?”

“Well… a lantern usually just lights one person’s path while a beacon can be a light to many.”  She pauses to gather her thoughts.  “And my Soul Beacon, as you say, sometimes feels grand enough to light the entire world, but then other times, it feels weakened.  As if it may even go out.  But, when I use this tiniest bit of energy to reach out to another being, I feel it start to grow again, bringing with it an unknown warmth of serenity.”

“YES.  So wise, yet so young.  Your body belies your true spiritual age.  I shouldn’t be surprised; the spirit is with each of us to see and feel when we are ready.”

His gnarled hand cups the young girl’s with tenderness. “That warmth and glow you feel is your true Life Source.”

“I feel it.  I truly do.”

“I can tell, dear one.  Your Soul Beacon may flicker, but it will never go out.  Many become fearful when they sense the depletion of their Beacon.  Without stopping to reflect on what’s happening, they begin to hoard what little light they have left.  Greed and fear rule their every move.”

“But, that’s no way to live!  How very lonely.”

“Don’t fret; that’s the glory of our Soul Beacons.  You can use your special gift to spread the light to others in need.”

“Gift?”

“Yes.  For without realizing it, you are touching every being you meet.  You are spreading your gift from heart to heart.”

“How do I know if it’s working?”

“The proof is in the result.  Think of someone you’ve met who seemed down and defeated; their energy depleted; their hope lost.”

Looking off at the arriving sunset, she sees the face of the farmer in the blazing riot of reds in the Western sky.  “Yes, I remember now.  I’ve met a farmer who had lost his wife; all he wished was to lie down in his fields and give his life back to the Earth.”

“And do you remember what happened during your visit with this farmer?”

The girl retells the story of her chance encounter with the lonely man.  “As we were talking, I slowly experienced a change in his entire demeanor.  His body began to unfurl from the protectively curled stance I first found him in.  He started to lean in to me instead of away.  Shadows of a smile graced his lips.  And he thanked me for spending some time with him and reminding him of all the reasons he needs to stay here and continuing living, no matter how hard.”

“And, you, how did you feel?”

“Well, I couldn’t understand why he was thanking me.  I hadn’t done much; I just talked with him for a while. I felt like thanking him.  At that moment, I felt beaten down by my journey; I was bone tired and couldn’t see any end in sight.  And then I met the farmer, and my journey had purpose again.  I left with a spring in my step.”

“Young one, when we take our light and shine it on others, they are bathed in our Energy.  Through caring gestures and pure human interaction each of us has the ability to recharge our depleting light sources; our Soul Beacons.”

“So, that’s all it takes?  Just showing some compassion to another being will re-build their energy, recharge their Soul Beacons?”

She pauses and ponders on this.  It still seems so simple.  And then, she sees.  “Ah, it seems like actions we should all be taking naturally.  But, in today’s world, everybody’s heads are down, looking at their own small space.  But, if we look forward, into the eyes of another, we not only validate their existence, we are validating our own!  And, it’s when we feel the most vulnerable and weak, that we have to reach out.  Otherwise, we all are just walking shells of what we are truly meant to be!”

“Now, it’s your job to spread this message from one person to the next as you continue on your journey of life.  The brighter your Soul Beacon becomes, the more people will be attracted to you.  Use this not to gain power over others, but to spread your energy out like a spider web, each tendril touching and igniting a Soul Beacon lying dormant within another.”

“Shine on, young one, shine on.”

Staying Angry at My Chronic Illness: I’m the One Who Gets Burned

Am I angry at my illness?  This was a question recently posed by a friend who remarked, “I know I would if I were you.”  And it’s given me pause.  I certainly have been angry at my illness in the past, or more accurately, at the doctors who ineptly handled my illness resulting in near-death effects.  Holding on to the resentment aimed at these negligent doctors gave me a false sense of power in a situation where I was entirely powerless.  If I could focus my energy on them; I wouldn’t have to face the reality of my physical unwell-being.

When I sit quietly with this question today, I stay deeply aware of all the emotional currents running beneath the surface.   And none of them resonate with anger; not any more.  Is that even possible?, I wonder.  Yet, it is.  Time heals; if you let it.  Somewhere during my medical journey, I realized the only one I was hurting by holding onto this red hot coal of anger was me.  I waited years to lob that coal at the ones I resented.  In the end I was left standing with the hot coal in my hand; the only one burned by this “righteous fury.”  I got tired of burning myself.  I finally had the insight to see that by holding onto this on-going anger, I thought I was giving myself back power.  But in truth, I was giving these doctors the power, by constantly bringing their negative energy into my life over and over again.

Anger and resentments are tricky things.  Many of us are afraid to let go of anger, because then it will signify that the other side has “won.”  That you are giving in.  But, it’s the exact opposite.  Just because you forgive, doesn’t mean you forget.  We often associate the word “forgive” with excusing someone for their behavior or mistake.  And this can be true.  But, in this circumstance, forgive falls under the alternate definition: “to stop being angry about or resenting somebody or somebody’s behavior” (Encarta Dictionary).  That’s all.  I decided to stop being angry; to put down the hot coal and start living my own life again.  I have not forgotten what the doctors did; I could never forget that.  But, by forgiving, this experience became an extremely unpleasant memory.  It taught me how not to act in the future.  In this case, I no longer implicitly trust doctors just because they have a medical degree on the wall.  If they are not responding to the needs of my body, I go elsewhere.  Because that’s the key, it is my body.  Therefore I am the only one truly qualified to know when something is awry with it.  In this case, by processing my anger into forgiveness, I’ve gained valuable tools in which to address my physical needs.  If I was putting all my energy and effort into hating these people, I would miss the experiences that are happening in the now.

Holding onto to anger is living in the past.  I have already lost chunks of my life to illness, I am not about to sacrifice anymore by reliving the resentment I feel at my physical condition.  That’s not to say I don’t get frustrated with my body and its limitations (see yesterday’s post as a fine example of this!).  I just choose to fully embrace these feelings when they come, validate myself, share them with others, and then let them go.  For me, dwelling in a place of anger only creates a septic environment filled with fear.

So what is the opposite of living a life of anger?  It’s living a life of acceptance.  Again, acceptance doesn’t mean that I have to feel joyful about my situation, it just means that I have come to terms with life’s circumstances; it’s “the realization of a fact or truth and the process of coming to terms with it” (Encarta Dictionary).  The truth is I have a chronic illness; actually several chronic illness.  They are all autoimmune in nature; my body has decided that my organs, cells, blood vessels, bones, and connective tissues are the enemy and will attack them at no cost.  Those are the facts.  It is also my truth that my disease cannot “attack” my spirit unless I let it.  I choose to accept the facts of my situation and to live in what I know to be true.  Holding onto to anger at my body only creates another invasive disease.  It makes me stay stuck in the past, in the “what if’s” and “if onlys.”  If only my life had turned out differently.  Well, it didn’t.  So instead of constantly fuming over my situation and asking (wailing), “Why me?!,”  I’ve decided to bury my anger, plant a garden of acceptance, love and hope and face each day with “What’s next.”  These are my circumstances; it’s up to me what I do with them!

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

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

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

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

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

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

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

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

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

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

I Am One Big Ball of Raw Nerves

Mihail -Miho- Korubin ; Oil, 2012 ~ “It Is Over”

I am a bundle of nerves; raw and jangly, the all of me is on edge.  I just went to my pain doc to try and get some relief from this “nervy flare” and had to not only explain it all to a medical resident who spoke broken English, I then, one hour later, had to repeat the same info to my doctor!  It’s hard enough to communicate what is currently going on with my regular physician, let alone trying to explain it to someone who speaks a different language with me!  Can you hear my frustration yet?

But, truly, I am exasperated with my on inept body; at this flare that was triggered almost two weeks ago and won’t let up. (see: Paying a Steep Price for Admission) I feel like every nerve in my body is frayed and hyper sensitive! And I mean sensitive!!  How to describe this pain?  This electrical, bug-crawly, burning, tingling, spasmy, hot, numb combo?   It’s the Nervous Wreck Cocktail, that’s for sure!  It’s like my body has decided to revolt against everything!  Touch=Bee Stings; Breathing=Fire; Walking=Hot Coals; Just Being=Buzzing Electrical Wires.  And the strangest symptom of all?  My histamine system jumps on board and starts reacting like I am being attacked by a horde of allergens; I start sneezing uncontrollably, eyes water, face puffs up.  I know, sounding crazier by the minute!

And if I can’t clearly explain it to myself, how do I expect others to understand?  I guess I just hope.  I hope that the doctor won’t look at me with that slightly confused visage, wrinkled brow, sad, concerned eyes, downturned lips… I can almost see the wheels in his head screeching to a halt, not sure what direction to turn next.  He’s very empathetic, that’s a positive.  He kindly puts his hand on my knee and apologizes for my pain.  He tells me how strong I am in the face of so many difficult situations, but that he can tell how much this current scenario is negatively impacting my life.  OH, really?  Were the tears a clue?!

And apologizing for my pain?  Shouldn’t he be apologizing for not being able to figure out how to treat my pain?  I know he feels bad… I do too!  But, the pain is there, so what are we going to do about it?!  Can’t do any of the typical treatment modalities, because I’m either already on the highest dose of a medication or have tried it and stopped for some reason or another.  He finally comes up with a “new one:” Nortryptyline at bedtime.  “If we can at least get your sleep better, than hopefully the pain will follow suit.”  Like I haven’t heard that one before!

And I hate this.  Because it’s so not like me to rant!  I don’t know if it’s the freedom and acceptance of this blogging world that has opened up this damn of pain or what.  It’s these damn nerves!  They set everything afire!  Uh!

None of this is really helping the pain to go away.  But, to know I am no longer holding this space alone (see: A Cosmic Connection) helps to diffuse it, even just a tiny bit.  Thank you for holding this pain with me.

I do believe that this is the greatest gift of this forum:  A sharing of energies, a collective soul.  We are all going through our own struggles, yet by bringing them out into the open, we are no longer carrying the burden alone.  And, selfishly, I think I hope deep down that someone out there will read my post and understand: truly “get it.”  And then I won’t feel so alone anymore!

And that’s what I forgot for a moment.  I’ve been afraid to let people all the way in right now.  To let them see how severely I am hurting.  I’ve been afraid of sounding “crazy” (I mean, come on, who says they feel like bugs are crawling under their skin?!).  I’ve been afraid of getting more of the “sympathetic, she’s sounding a little wacky, but I love her anyway” looks.

I don’t need your sympathy.  I need you to say, “Wow. I can’t imagine what you’re going through, but that must be really hard;” and to hold the space of pain, confusion and fear with me.

I don’t need you to try and suddenly change our relationship in order to make me better, to “fix me.”

Because I don’t know how long this flare will last.  And I have to remind myself; I don’t need to figure that out.  I just need to get through today.  I just need to remind myself that this will pass; and, that, until it does, it’s okay to reach out to others and say (scream?), “I’m hurting!”  And to admit that I can’t engage in activities right now, but that doesn’t mean I won’t always be able to.

Just for today… I need your love.

Just for today… I don’t need you to understand exactly what I’m going through, I just need you to accept me.  To accept the all of me.

Just for today… I need to feel like I’m not crazy.

Just for today… I need to cry.

Just for today… I need to count the minutes, because I don’t know if I can make it through the next hour.

Just for today… I need you to know I don’t mean to be short with you, I’m just on edge.

Just for today… I need you to know I may feel fine one moment and horrible the next.  I’m not trying to be inconsistent; my disease is inconsistent.

Just for today… I need even more of your love (and maybe some extra hugs, too!).

The Autoimmune Puzzle PART 1

“What does “autoimmune” mean?” “What’s the name of your disease again?” “Wait, could you slow down so I can write that down?”  “My friend has (insert any number of conditions), is that like yours?”

Those of us with chronic conditions can all relate to receiving these inquiries, from close family to just met strangers, almost daily.  And now that I live in the vortex of the autoimmune cyclone, I forget that the average citizen doesn’t know what I mean when I toss around random medical terms, speaking the unique dialect of the “autoimmunie”.

Can you name one autoimmune disease?

If not, you are not alone!  In a recent Roper poll, less than 6% of Americans surveyed could identify an autoimmune disease. It’s time to change that statistic!

So, today, I am going to begin a series of posts to Untangle the Mysteries of the AUTOIMMUNE Puzzzle:

When people hear the term “autoimmune”, they interpret it in all kinds of ways… from HIV, to AIDS, to cancer, to the flu… anything they relate with “immunity.”  My typical layman’s definition is: “There are hundreds of autoimmune conditions.  The most commonly known ones are M.S. and Lupus.   Basically, it’s when the body turns on itself and starts attacking a variety of systems and organs.  It can attack the bones and cartilage, the skin, the nervous system, internal organs; basically anything it perceives as an ‘enemy.’”

Then I usually experience dumbfounded silence or a new barrage of questions: “What causes it?” “How did you get it?”  “Can you get better or be healed?”

I remember all the questions I had when I was first diagnosed.  Now its second nature, but it certainly didn’t start out that way!  So, today, I thought I’d go a little deeper to uncover the facts about autoimmunity.  I truly believe that knowledge is power… for the person suffering from these conditions, for their loved ones and caregivers, for our friends, and for the community at large.  If we are ever to get the funding needed to answer those questions above, we need to first educate people on the serious and wide-spread effect these conditions are having on the world!

So… let’s begin at the beginning:  What is AUTOIMMUNE?au·to·im·mune  /ˌôtōəˈmyo͞on/  Adjective: Of or relating to disease caused by antibodies produced against substances naturally present in the body. (from dictionary.com)

“What is Autoimmunity?”

One of the functions of the immune system is to protect the body by responding to invading microorganisms, such as viruses or bacteria and producing antibodies or sensitized lymphocytes (types of white blood cells, important to immunity). This process can be beneficial when the body attacks a foreign substance such as a virus, bacteria or cancer cells.  But it can become destructive when the body misperceives healthy cells and tissue as the enemy, creating antigens against these healthy cells and organs.

“What happens when your body comes ‘under attack’?”

Under normal conditions, an immune response cannot be triggered against the cells of one’s own body. In certain cases, however, immune cells make a mistake and attack the very cells that they are meant to protect. This can lead to a variety of autoimmune diseases. They encompass a broad category of related diseases in which the person’s immune system attacks his or her own tissue.  Autoimmunity includes diseases of the nervous, gastrointestinal and endocrine systems as well as of the skin, other connective tissues and blood vessels (basically anywhere in the human body!).  Autoimmune disease fall under two categories: Systemic (wide-spread, affecting multiple systems; in conditions such as Lupus and Rheumatoid Arthritis) or Organ Specific (in conditions such as Multiple Sclerosis, affecting the nervous system and Grave’s Disease, affecting the thyroid).

“I’m not sure I understand what connective tissue is?”

Connective tissue is the tissue which binds (holds together) all body “parts” (ex: joints and bones) and organs.  Connective tissue includes: cartilage, ligaments, and tendons.

“What causes Autoimmunity?”

The immune system normally can distinguish “self” from “non-self.”  Autoimmunity occurs naturally in everyone to some degree; and in most people, it does not result in diseases. We need natural autoimmunity to survive; to fight foreign substances in our bodies.  The problem arises when the body perceives natural occurring substances (cells, tissues, organs) as foreign.  Autoimmune diseases occur when there is some interruption of the usual control process or when there is an alteration in some body tissue so that it is no longer recognized as “self” and is thus attacked.

“What do you mean, ‘under attack’?!”

 Autoimmune diseases arise from an overactive immune response of the body against substances and tissues naturally present in the body.  In other words, the body attacks its own cells.  It starts to perceive everything as the “enemy.” (Imagine your immune cells chomping away through your cartilage or bones… I picture a horror version of the game PacMan!)

“Is the process/progression of Autoimmune Disease always the same?”

No, there are many variations on the way a body can attack itself:

• Some diseases are relapsing and remitting (flares of symptoms come and go) and some are progressive (symptoms always present- my disease progresses in this way)
• Some diseases cause a slow progression of the destruction of a specific type of cell or tissue
• While other diseases stimulate an organ into excessive growth
• And still other diseases interfere with the function of an organ or bodily system

Now you’re starting to see the many puzzle pieces in the Enigma of Autoimmunity!

 

End of PART ONE

Be on the look-out for further answers to questions such as:

“Who is affected by autoimmune disease?”

“What are the effects of a prolonged autoimmune attack?”

“What are treatment options?”

“What conditions are considered ‘autoimmune’?”

“What kind of medical professionals treat these conditions?”

“What the heck is Relapsing Polychondritis?”

“What does it mean to have a ‘rare disease?’”

And the BIG ONE…

“What causes the body to turn on itself?!”  (This one’s a gripping tale so you’ll want to stay tuned for more!)

Thirsty for more information or knowledge right now?

Here are top sources I recommend:

American Autoimmune Related Diseases Association: https://www.aarda.org/

American College of Rheumatology:  http://www.rheumatology.org/

National Institute of Arthritis & Musculoskeletal & Skin Diseases: http://niams.nih.gov/

Polychondritis Educational Society, Ltd.: http://polychondritis.org/

***DISCLAIMER: The above information is compiled from my own personal research.  It is meant purely as a starting point.  I encourage you to contact a medical professional with any questions regarding Autoimmunity.  And, certainly if you think you may have one of these conditions or need information about a current diagnosis, contact a physician as soon as possible to receive information re: your conditions, treatment options, etc. ***

Perhaps I should come with a warning label?

Why do I have the need to let people know right off the bat that I’m broken?  Perhaps, if they acknowledge that they are already dealing with “damaged goods,” their expectations of me will be lowered.  And therefore they won’t be disappointed when, eventually, as always happens, the true nature of my abilities (disabilities?) are revealed?

As so many of us that deal with chronic illness, especially those on the “autoimmune spectrum,” my illness is all on the inside.  At first glance, I appear to be a healthy, well put together woman.  My skin doesn’t look wrinkled or marred (as long as you don’t get a peek under my shirt at my surgical scars!);  I enjoy dressing in cheerful colors; I’ve applied a layer of make-up to brighten up my pale face and disguise the circles under my eyes.  I am not gaunt, in fact my multiple meds. give me quite the “robust” appearance!  I am putting on a show!   But inside… now that’s marching to the beat of a whole different drummer!  While I stand smiling at you, nodding at your comments, and putting on my happy, hopeful face, there is a war going on inside me.  One that I am rapidly losing.  The Autoimmune Army has already marched its way across my muscles, joints and cartilage, my colon and small bowel, my spine, my cranium, my nervous system, my kidneys, even my heart, giving me an atypical heart attack at 39!  At that’s just a quick summary.

So, how do I rectify these two disparate sides of myself?  I am both… I truly am the happy, hopeful person you see on the outside; the one who enjoys feeling pretty, who craves to be “normal.”  But I am also the hurting, struggling woman who has to fight her way through each day.  Whose participation in the simplest of social activities will knock her out for days.  Whose attempt at the most minor household chores sends her into tears of frustration.

So, I think, perhaps I should come with a warning label:  Contents may be different than they appear.   But, that’s really not the answer either.  Because then I have already disqualified myself, undermined my abilities.  I truly don’t know what I’ll be able to do on a given day.  But what if it’s one of those rare “good days?!”  The ones we all hold on for.  I’ve already discounted the weight of this by telling everyone I’m just not up to par.

There is no clear answer here and my approach continues to fluctuate.  But, the most important thing I’ve learned is not to count myself out.  And to seek out friends who are kind, caring, and, most of all, flexible.  And then share with them the “truth,” my own reality, and see how they react.  I wouldn’t go on a blind date and immediately blurt out my deepest secrets.  So why would I want to include any of this in an initial introduction: “Hi, my name’s Tamara.  Glad to meet you. Oh, and by the way, I’m a broken, hurting person… just so you know.”  How ridiculous is that?

I am not broken!  I am complex!  I am unique!  I don’t take life for granted, because every moment presents a new opportunity to learn something about myself or the world.  I have deep empathy for people with a wide range of conditions.  I get you, and you get me.  We are not alone!

It’s during these times, that I gently remind myself to push the pause button.  To take a deep breath.  And to practice a beautifully healing mantra my friend Lisa shared with me.  I’ve just paused and given myself this gift.  Now, I am going to pass it on to you…

Nature’s Love

1.   Take 4 deep, cleansing breaths

2.  Place your right hand over your heart (the most important step… give yourself the gift of this healing touch!)

3.  Repeat this mantra 4 times:

“I am a whole and lovable person just as I am.”

“I am a whole and lovable person just as I am.”

“I am a whole and lovable person just as I am.”

“I am a whole and lovable person juts as I am.”

4.  Allow yourself a few minutes of relaxation.  Breathing love into yourself, feeling the power of being uniquely you.

The beauty of this exercise is that it can be done anywhere and at any time.  Even in a room full of people, no one will notice if you casually place your hand on your heart and silently repeat the mantra.  After a while, just the touch alone is a soothing reminder to bring you back to center.

I would love to hear about what techniques others employ to remind themselves that they are right where they are supposed to be.  That they are right who they are supposed to be.  Please share your thoughts and comments!