~It's 2 am and I'm too tired to sleep.......

~So I know that doesn't make any sense at all, but it's my overworked mind that is exhausted, but restless.  I'm sure most of us can understand that concept?

It seems that there just aren't enough hours in the day for me anymore.  I have so much that I want to do, but yet my body says NOOOOO.  I've tried ignoring my body and pushed through with my goals, only to find out that was the very wrong thing to do in this condition.  It's so frustrating!!!

So here I am, trying to cram in some words that I want to stop from swirling around in my brain making me nauseous.

First of all----this heartburn can take a hike any time now!  I am pretty sure it's related to the bazillion meds I have to swallow each day.  I think I need to add an antacid to this......Ranitidine perhaps??  I took this before for some prescribed anti-inflammatories which ended up disagreeing with me in unmentionable ways!  It was horrible......but I didn't have heartburn---so I guess it worked??

Here's a refresher for those that may not have seen the previous post about my "condition":

 

Looking at these photos isn't making this indigestion go away any faster!!!

Speaking of said "condition", I am off to the mainland tomorrow for another Lung Function Test as the results of my screening test last week were unsatisfactory.  Since this might be related to the lupus, we need to be proactive in seeking answers.  I am remaining positive and hoping for the best!

I repeat to myself......I will heal.  I am healing.  I will be healthy.  I AM HEALTHY........I have a goal to live to be 100 YEARS OLD---AND I'M GONNA (beeping) DO IT TOO!

I am determined.......and I have to say that I've been fairly successful in maintaining this cheery outlook since I made it a priority to focus on ME for a change.

Now......the other issue.  I am disgusted.  I am sickened.  I am thoroughly and utterly appalled at the insensitivity and hideous reactions of someone I deeply admired.  I don't even know what to think anymore.  I feel so..............dare I repeat myself?......DISGUSTED.  I am more disgusted with this person than I have ever been with anyone else.

Why?  Because I honestly didn't ever think that he was capable of such gross and indecent behaviour.

I know I haven't been a barrel of monkeys fun to be around, but holy hell.........look at my life for F-sakes!!!  I have done the best I can, while maintaining a level head (for the most part) through the most horrific experience that any mother can live through.

Add D-I-V-O-R-C-E and financial issues up the wing-wang and you're looking at a disaster in the making.

But the FUN DOESN'T STOP THERE!

I made a serious, life-altering decision to share some comfort with someone and it resulted in an unplanned pregnancy.  Shocking.....but as soon as I caught my breath I accepted my plight for I brought this upon myself.  I won't even pretend this was an immaculate conception.

So, here I am.........legally separated, single-mom, 4 living sons, one stillborn son, 2 sick sons, financially ruined home-owner of the Money Pit from HELL----and alone and pregnant.  Let's not forget that I also had a very angry estranged husband that cut-off my vehicle insurance and refused to handover the ownership papers so I could insure it myself (nevermind that I had been paying the vehicle insurance myself for years----can you say "begruntled" much?---k, that's the nicest thing I can say about that!) so my wheels were literally rotting away into the paved driveway for 3 yrs.  How nice----NOT.  Borrowing wheels from my mother came with an endless slew of judgment, and I had to always explain why and where I was going.  It sucked the nastiest, sweatiest, stinkiest donkey balls you can imagine!

So anyway.....where was I again????  Oh yes...........we were talking about ME.  "Badluck Shleprock"

Now back to spewing my sarcasm............

My baby was prenatally diagnosed during my fifth month with Trisomy 13---"incompatible with life"...."failure to thrive"........bla bla bla.  I was alone, pregnant, and devastated beyond comprehension.....not to mention scared out of my freaking mind!!!!!!!!!!!!!!!!

Skip ahead......weeks before Bennett's delivery my estranged husband has me served with papers because he has suddenly decided it would be PERFECT TIMING to drag me into court and try to take away my children.......thereby eliminating my ONLY source of income should he get his way.

Life suddenly got even worse than I could even imagine, but I had no time to think about that.  I had to GO!  It was time to move to Toronto and await the impending arrival of Nimkee.  The weeks were unbearable----like the ticking of a time bomb waiting to go off at any given second.  Was I going to deliver another stillborn son?  Will he survive delivery?  Will he die during delivery?  Will he die right away?  Will I get to hold him?  Will he require surgery?  Will I ever bring him home?????????????

Bennett-Chadlen was born on March 29th, 2 days overdue.  Sadly he passed away 8 days later and my world was turned upside-down again.

Who in their right mind even thinks that going through all of this was going to be easy for me???  How can anyone think that a loving, joyful relationship is going to develop and blossom during the darkest period of my life???????

I trusted this person with my heart and soul.  I shared my deepest love, I leaned hard......I trusted he'd keep his word to be here for me?  I mean really----how could anyone pull away from someone in need such as I was??

I never promised you a rose garden.......isn't that how the song goes???

I made it clear that my life was SHIT.  Pure and utter SHIT.  Let's not sugarcoat the truth.

Yes, I needed comfort and support.....but never did I ask for anything other than loyal friendship in return.  I didn't want money, or entertainment.  I didn't want diamonds or luxurious gifts.  I didn't ask for travel, or expensive dinners out----nothing of the sort!

Just sit with me.  Listen to me.  Hold me.  Care for me.  Laugh with me.

I loved in return.  I was grateful and thankful......and always made it known through my words of gratitude, my affection, my attentions.........I gave it all-----everything that money cannot buy.

Me.......emotionally destitute, nearly bankrupt-----literally shattered----but yet I had it in me to show love, and compassion......and I listened and gave comfort.

I took....but I GAVE just as much or more than I was given.

Where am I now????  Sitting here.......alone........and DISGUSTED.

K.....it's 3 am and I've said all I need to say for one night. Excuse the ramblings of an "allegedly" insane house-mom.  Whatever......Ask yourself.  Where would you be?  You can barely survive being loved and wanted.....let alone have to endure anything quite this emotionally devastating.  I know your story and it melted my heart and made me want to hold on tighter.  What's your excuse???

For what it's worth.......my heart hasn't stopped loving----despite how disgusted I am right now.  Try looking at MY LIFE and stop feeling so victimized, used, and wounded.  Nobody here has harmed you.  You tell me what is a lie in any of this?  Focus on the positive......and be proud of what I have survived and overcome.  Feel lucky.  Feel honoured.  That is how I feel about you.......it's all unconditional.......

Do not blame me because all you can comprehend is negativity.  If all you ever see is the negative and assume the worst in every situation-----then that's all you're ever going to feel.  You will always feel negative and irritable.....uncomfortable......fearful.

I have a right to react to the constant rejection and miscommunication......and don't act shocked.  You have treated me far worse for way less............and that's the honest truth.  Own your mistakes.  I haven't denied mine. 

My apologies are sincere.  My love is real.  My loyalty is unfaltering.  My forgiveness is never-ending.  I don't fear anything, or anyone----but I am choosing to move on with my life and not look back.  I deserve better than what I've allowed and accepted. 

I don't think I will ever understand how anyone can be so mean.  MEAN PEOPLE SUCK!

~The Story of Unconditional Love Through My Eyes~

"Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be." ~The Water Giver

I came across this quote today and it brought to mind my youngest son Bennett-Chadlen.  Upon further inspection, this Mother wrote this book all about her son that nearly died in an accident and struggles with an Acquired Brain Injury.  

It is the story of a Mother's love and determination to assist her child to succeed and re-learn all the things that many of us take for granted.  Through her writings we are able to observe not only her feelings, but the healing journey and poignant look into this family's day to day experiences.

The Water Bearer is a story that I could have written myself, and maybe one day I will, as I too am the Mother of a son that has struggled through life with the residual effects of his own Traumatic Brain Injury received after being struck by a teenage driver at the age of 4.

It is a story that I became re-acquainted with when I learned of Tristan and Tanner's 'Hereditary Spherocytosis', and again when Bennett-Chadlen was diagnosed prenatally with his Trisomy 13.

The love for my son's has sustained me, and pushed me to persevere through excruciating times in our life.  There were days I felt utterly alone and overcome with emotions.  Some days I could only sit alone and cry and wonder WHY?  Why so much heartache?  Why me?  Why us?  WHY, WHY, WHY?

In the silence that followed the deep purging of fearful tears and the ever-nagging, complex questions I had for the universe......I felt renewed and gained the strength and courage necessary to take each burden and create a challenge to overcome.

I was born and blessed with a fierce determination to identify and tackle all of life's challenges to the best of my ability.  I create a list of 'things to DO', and I won't stop until I have exhausted that list.  When I cannot think of one more thing to DO, I will then take a deep breath and chalk that up to a learning experience and do my best to function and cope with the daily struggles.

I appreciate each and every day, and cherish the small things in life.  I start and end each day with an awareness of the miracles surrounding us and I'm grateful for the pure gift of life.

My boys have taught me to love deeply, unconditionally.  Because of them I strive to be a better person.  There are no words that can capture the true essence of my love and admiration for all of the special  people in my love that I hold near, and dear to my heart.

I shall leave you with these words.......

Face each challenge.  DO your best.  Be brave, courageous, and compassionate in everything you DO.

And always remember ~ There is no such thing as failure.

~photo courtesy of Heather Renee Morgan of Lifespark.ca~

~What makes a FRIEND?~

~HYPOTHETICAL QUESTION---You have a friend whose company you really, really enjoy---but this friend has a bad habit of making plans and then cancelling out on you.


This friend also gets offended because you express your disappointment and hurt and want to set up boundaries regarding friendship.


So this friend doesn't like how you react to their extreme insensitivity and lack of trustworthy loyalty and tells you the reason they avoid seeing you is because you make that friend uncomfortable with your responses of how upset you get when this friend bails on you repeatedly.


Apparently it is YOUR FAULT THIS FRIENDSHIP ISN'T WORKING OUT BECAUSE OF YOUR REACTION TO THE CONSTANT REJECTION.  Apparently this hurt and upset that you express makes your friend uncomfortable and want to avoid you even more.

It's like a vicious cycle.

FRIEND:  "I hurt you----you get angry and hurt----you tell me how you feel----I get uncomfortable and want to avoid you because I don't want to hear you tell me how upset you were to my face.  I'll stay away for a few weeks and let you cool down, then I'll come see you again once you see it MY way and let ME DO WHATEVER I PLEASE because my life is about ME and has nothing to do with YOU and YOUR CRAPPY FEELINGS.  Don't make me feel bad because I hurt you with my selfishness.  I am fully entitled not to see  you when I don't want to."


ME:  "True enough.....but guess what?  I am fully entitled to be hurt and disappointed and it is within MY RIGHTS to end a friendship like this because I don't see any mutual respect or compassion.  I would never treat my friends like this and I don't want a person like you in my life."


FRIEND:  "See, this is why I didn't want to see you.  You always react like this and it makes me want to stay away even more."


ME:  "Oh, I'm sorry I am hurt because you rejected me......(you @#$%^&&*%$^%#---translation?  fucking selfish, heartless bastard)  Explain to me again why I should be your friend?????  Why should I be okay that you do this to me over and over again????  Please, make me understand how this is MY fault??  Oh no.....don't even twist this around on me.  I didn't reject you.  I didn't treat you like an option while you make me a priority.  Yes I am angry and hurt.  You're not???  Well----I guess it's obvious then.  You don't care about me because I am irrationally upset with the constant push and pull.  I'M SORRY.....I'LL JUST SIT HERE SILENTLY AND SMILE LIKE IT DOESN'T RIP MY F-ING HEART OUT."

Now say you avoided this friend for months and months because of this issue, only to decide to give that friend another chance---and you made it perfectly clear how disappointed, hurt, and rejected you feel about it happening.


You tell this friend that you hope this isn't going to be a repeat of history because you don't want bullshit and upset feelings in your life.


So this friend asks you to hang out one day next week---then emails you and says "I ran into ____ & we're going to hang out instead".

WHAT WOULD YOUR IMMEDIATE REACTION BE TO READING THAT MESSAGE???


What would you FEEL?


What would you SAY?


What would you DO?


I really want an answer to this because this "friend" doesn't seem to understand that this is disrespectful and hurtful. You are accused of being too sensitive and controlling because you don't want to sit at home waiting like a faithful little puppy.


Am I wrong to be upset????????

I can't see this going anywhere.  I don't see how I will ever receive what I deserve or want out of this, and I know that I can't allow this to continue.

How do you open someone's eyes when they don't really want to see?

I feel like I have no choice but to add one more ex-friend to the scratch list of toxic people that I don't deserve to have in my life..............

How am I supposed to be okay when it just hurts this much over and over again?????????????

If someone doesn't care about losing me as a friend, why should I keep the door of communication open?

I consider myself to be a great friend.  I love my friends with all my heart.  I listen, and do anything they need me to do.  I reach out when I know they are feeling a little lonely or lost.  I send virtual hugs when I can't be there in person.  I make time to provide comfort and support when it is needed the most.

I feel that I deserve the same in return.

Love me, respect me, treat me like a priority.  Make my joy a desire of yours--as I only want to give joy in return.

Life is too short to be unhappy.  Don't waste time with people that don't truly care about your inner-peace, and joy.  Make me smile and I'll be your friend forever.

Make me cry and I'll make you a memory.

~Fear vs Love........which feeling will you choose?~

~I bought a new book this weekend.  It was 25% OFF and I couldn't bypass it as it's a program that up until now I had been following online.

The book is entitled "The 21-Day Consciousness Cleanse--A Breakthrough Program for Connecting with Your Soul's Deepest Purpose".

The 21-Day Consciousness Cleanse is a detox diet for the soul. When you take the time to cleanse your physical body of accumulated stress and toxicity, you are rewarded with increased vitality and optimal health. In the same way, the consciousness cleanse is designed to purify your mind and emotions, bringing you enormous amounts of strength, confidence and deep inner peace. The cleanse is designed to clear away the difficulties of your past—your struggles, stress, hurts and resentments—which may cloud your perception and prevent you from reaching your heart-filled goals.

The 21-Day Consciousness Cleanse is a practical program that promises to alter the quality and direction of your life and support you in not only obtaining your goals for the new year, but, more importantly, creating a new loving and nurturing relationship with yourself and with the power that sources you. This program will enable you to take back your power from the outer world, turn inward and reconnect with your inner guide and your highest self. Instead of being guided this year by your head and what you think you should do, you will be inspired and directed by your heart's deepest desires.

~Another book that I'm making my way through is called "WHAT HAPPY PEOPLE KNOW".

Research has shown that the root of unhappiness--fear--lies in the oldest, reptilian part of our brains, and negative reactions are often dictated by primal instincts. We're literally "hardwired for hard times."

First, you'll learn the only two issues that ever cause unhappiness and devise your plan to overcome both of them. Then, Dr. Baker teaches you how to spot the happiness traps, the five doomed ways we try to make ourselves happy, only to dig ourselves further into misery. Finally, he shares his happiness tools, the six simple skills that, when practiced consistently, will inevitably lead to greater optimism, courage, good humor, and fulfillment--in short, to happiness.

 My goal is to understand the things in life that often set us back from achieving our ultimate potential.  There are so many negative factors which affect many of us in unsettling ways and stagnate our ability to move forward with courage and fearlessness.

Let's face it, modern day living is difficult and confusing a lot of the time.  I don't begin to pretend that I have all of the answers, but I will do my best to figure it all out and will share what I have learned with others so that all of you may also learn and grow spiritually, emotionally, mentally, and physically stronger.

If any of you have already read these books, or plan to---please feel free to share your experiences as you feel moved to.

The most important thing that I have learned thus far is that fear and love cannot co-exist at the same moment in time.  The brain cannot process both of these emotions simultaneously.

You have a decision to make.  You either focus on the fear that binds you, or you make a conscious effort to bypass that and experience joy and inner-peace.

Fear vs Love........which feeling will you choose?

Living with LUPUS ~ One Day at a Time

~A couple of years ago I began having symptoms of extreme fatigue and a bad case of the BLAH's.  I would wake up each morning experiencing flu-like symptoms---aches, pains, headaches, etc., but it never really developed beyond the early 'warnings' that sickness was evident.

After weeks and months of experiencing these symptoms I decided that I should probably see my doctor and ask for a thyroid test as I was wondering if it may be related?

I wasn't concerned so much about the aches and pains as I'd been living with that for many years and chalked it up to residual effects from a bad fall I had taken on ice several years ago.  I had a slight fracture in my pelvis, broke 4 inches of my tailbone right off, and had crunched my spine like an accordion.  I'd been to the ER, did my 6 week stint of laying as motionless as possible on the living room floor, and followed up with chiropractic care and physio therapy for a few years.  Nothing seemed to help it, so I decided to just accept it and go on.

At the doctor's appointment I decided to only reveal the flu-like symptoms and didn't mention the severe joint pain which is worst in my spine, neck, hips, shoulders, and knees.  I was afraid the doc would prescribe more physiotherapy and weight-lifting exercises which often just made my pains worse.

We discussed some tests for thyroid issues and she wrote out a requisition for blood testing.  Right before I left I enquired about some other treatment options for my psoriasis besides the steroid lotion I have been using for about 16 yrs.

She mentioned Enbrel and told me to go home and check it out online.  Once at their website I saw a link for the National Psoriasis Foundation.  As I read the page I found out that joint pain along with the skin lesions,  is indicative of Psoriatic Arthritis.  I had many of the symptoms, including the nail pitting and joint inflammation, so I made a phone call the next day and confessed my other ailments.  She ordered further blood tests which led to me being referred to see a Rhumatologist.

And so the fun began.  Yes, you do sense some sarcasm here!

More and more blood tests.  Poking and prodding......x-rays and bone scans.....meds and more meds.

I am currently being treated for:

Fibromyalgia - "Fibromyalgia is a common syndrome in which people experience long-term, body-wide pain and tender points in joints, muscles, tendons, and other soft tissues.

Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, anxiety, and other symptoms.  

The primary symptom of fibromyalgia is pain.

• The exact locations of the pain are called tender points. Tender points are found in the soft tissue on the back of the neck, shoulders, sternum, lower back, hips, shins, elbows, and knees. The pain then spreads out from these areas.
• The pain is described as deep-aching, radiating, gnawing, shooting or burning, and ranges from mild to severe.
• The joints are not affected, although the pain may feel like it is coming from the joints.
• People with fibromyalgia tend to wake up with body aches and stiffness. For some patients, pain improves during the day and increases again during the evening, though many patients have day-long, non-stop pain.
• Pain can increase with activity, cold or damp weather, anxiety, and stress.

Fatigue and problems with sleep are seen in almost all patients with fibromyalgia. Many complain that they can't get to sleep or stay asleep, and they feel tired when they wake up.

Other symptoms may include:

• Irritable bowel syndrome with gas, and alternating diarrhea and constipation
• Memory difficulties and problems thinking clearly
• Numbness and tingling in hands and feet
• Palpitations
• Reduced exercise tolerance
• Sad or depressed mood
• Tension or migraine headaches"

Psoriatic Arthritis - "The arthritis may be mild and involve only a few joints, particularly those at the end of the fingers or toes. In some people the disease may be severe and affect many joints, including the spine. When the spine is affected, the symptoms are stiffness, burning, and pain, most often in the lower spine and sacrum.

     People who also have arthritis usually have the skin and nail changes of psoriasis. Often, the skin gets worse at the same time as the arthritis."

    

Ankylosing Spondylitis - "Ankylosing spondylitis is a long-term disease that causes inflammation of the joints between the spinal bones, and the joints between the spine and pelvis. It eventually causes the affected spinal bones to join together.  

The disease starts with low back pain that comes and goes.

• Pain and stiffness are worse at night, in the morning, or when you are not active. It may wake you from your sleep.
• The pain typically gets better with activity or exercise.
• Back pain may begin in the sacroiliac joints (between the pelvis and the spine). Over time, it may involve all or part of the spine.

You may lose motion or mobility in the lower spine. You may not be able to fully expand your chest because the joints between the ribs are involved.

Fatigue is also a common symptom. "

and Systemic Lupus Erythematosus - "Systemic lupus erythematosus (SLE) is a chronic autoimmune disorder. SLE may affect the skin, joints, kidneys, and other organs.  

SLE (lupus) is an autoimmune disease. This means there is a problem with the body's normal immune system response.

Normally, the immune system helps protect the body from harmful substances. But in patients with an autoimmune disease, the immune system cannot tell the difference between harmful substances and healthy ones. The result is an overactive immune response that attacks otherwise healthy cells and tissue. This leads to long-term (chronic) inflammation.

The underlying cause of autoimmune diseases is not fully known.

SLE may be mild or severe enough to cause death."

~Methotrexate is a chemo-therapy drug, which is used to suppress my immune system to prevent it from attacking healthy cells causing serious health issues, and tissue/joint damage.

~Once a week I inject myself in the abdomen with this cyto-toxic chemotherapy drug.

~These oral meds are ingested daily to assist with my physical well-being.  The injections are done once per week.  Tomorrow I will be adding Cymbalta to this daily treatment in hopes it will assist with pain relief.

I've been experiencing shortness of breath and lung pain which can be a sign of problems with lupus.  My chest x-rays came back normal, but I'll be having a Lung Function Test tomorrow to see what's going on.

I have a requisition to have a Bone Density Scan performed to see if I may have osteoporosis as I've had many broken bones all over my body.  Tests have also revealed a Vitamin D deficiency in my system, so I must take 3,000mg daily to assist with my body's ability to absorb Calcium and strengthen my bones and prevent further bone loss.

I've tried less invasive treatments but my body didn't respond well to Voltaren or to the Plaquenil.  After 16 weeks on the plaquenil, I developed intense itching which felt like I had fire-ants eating their way out of me from the inside of my body.  It was horrible!  It turns out I am allergic to it and it was affecting my liver, which caused the toxins to build up in my blood system, creating this intense itching which nearly drove me mad.  All I could do is slap the surface of my skin to alleviate some of the symptoms.

Last summer I broke out in a painful, itchy rash and tiny fluid-filled blisters which could be a symptom of a Lupus flare, or it could be related to a sun-sensitivity from the METHOTREXATE INJECTIONS.  This has changed the way I can enjoy the outdoors in the summer months and has put a serious halt on the amount of gardening that I can do.  I will be having some regular blood testing to see if the lupus factor in my blood is increasing, and make sure that my liver and other organs are functioning properly and effectively.

Last week I began taking LEFLUNOMIDE tablets as well, 10mg daily.  It is also an immuno-suppressant medication to treat the lupus and psoriatic arthritis symptoms and help to control the flares.

I don't allow my mind to stress over this diagnosis.  Worrying doesn't fix anything and the stress can just add to the problems.  I prefer to just remain as positive as possible and make the most of each day.  Treatment is available and at this point I am open to exploring all viable options.  I have to admit that up until quite recently I have been in denial and didn't want to inform myself with all of the necessary details.

If you are experiencing any of these symptoms, please don't hesitate to see a physician and have some testing performed.  An early diagnosis is best.  I have suffered for at least a dozen years with all of these symptoms before being diagnosed.  Check out the various links that I have embedded throughout this post and see a Rhumatologist for all of your joint and tissue pains.  

Don't delay.  Be safe and healthy.