Pain, pain, go away, come again another day….

I think back to when I was first diagnosed…

29 years old. Mama with 2 babies. My body went rogue on me.

I felt a combination of fascination and fear each time my nervous system would misfire.

I would play with the bouncing vision in my right eye – the lesion was in the back of my neck and standing in front of air conditioning could actually make it stop. “Tigger Eye” I called it. The likelihood of anyone ever experiencing this is slim, if it does though, DO NOT close the good eye to experience only the jumping sight, you will vomit. May you never have to heed this advice.

I had numbness, burning, and stabbing in my thighs. Shooting pains and firey heat that would hit randomly and cause me to lose my breath. I have long since lost all feeling permanently in those areas…a new normal. Quite frankly, I hardly notice it now.

My bladder went. This mortified me. I told no one – literally not a soul – and stifled tears at the doctor’s office for that fateful first appointment. It was this symptom that eventually led to my diagnosis. I didn’t share the journey with anyone until several appointments in, when it was time for the spinal tap and MRI.

Ah, that first MRI. I was scared to death. With and without contrast – scanning from my brain to the base of my spinal column twice I was “shooting the tube” for almost 2 hours. Today I would welcome this time as a much needed nap.

My hip pain was very intermittent then. And I unfortunately let it stop me. I bowed out of many activities when it would flare – not wanting people to see me weak. What I would give to “only” have that pain level today.

It’s been constant for weeks now. Slowing my walk, bringing me to tears, dropping me to my knees, and yet I keep going.

What else is there to do?

I’ll be back at the doctor again within a few weeks when my ability to move, sleep, and push through is exhausted. I doubt I will be able to avoid drugs this time. I’ve been forging my own path and beating the odds for so long, I begin to question what is best.

I’ve never been able to run around with Dylan.

Tears just filled my eyes when I typed that.

He only knows his mama in pain.

This breaks my heart.

I pray for gratitude for the good moments, faith for the dark times, grace for myself and others.

I pray for a cure.

I believe we will find our answers buried somewhere between genetics and lifestyle.

I don’t like having a label – quite honestly I have been given so many at this point I consider them all a joke. The reality is the medical community doesn’t really know why autoimmune diseases are running rampant. There are many clues and no definitive answers.

Sometimes I play Dr Google, convinced I will find the missing piece.

Most times I push through each day, accepting my symptoms, with little energy left from enduring them to pursue answers.

I’ve heard the medical community tell me on more than one occasion I wouldn’t be able to walk again. I hear those words often in my mind and remember those moments vividly.

I may be slow, I may have pain, I may even cry and curse – I also continue to walk and absolutely refuse to let statistics be my fate. I am not a number. I use their words as fuel for my fire and flip them off in my head as I crawl up the stairs. I will not be stopped.

I am a force for good. 💖

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Chronic pain

It’s impossible to understand just how devastating it is unless you’ve been there and I wouldn’t wish that on anybody.

The emotional toll is the highest imaginable – relentless, never ending, slowly debilitating. One minute you are deep in the trenches engaged in battle and a split second later you have nothing left and quit.

It sucks your soul from you without even knowing it is happening.

You become an angry person. You negotiate with your creator. You concede. Then you muster up the strength to fight back again.

It’s a roller coaster you didn’t ask to ride and can’t get off.

You feel guilty for needing help. You feel worthless for accepting it. You push people away and then lament being alone.

You wipe your tears and climb back in the ring, determined.

You plaster a smile on your face.

You read and research and are willing to try anything – absolutely anything to end it. This time will be different. This cure will work.

When it wanes you have hope, when in waxes you fill with anguish. It never leaves though. Always by your side, gnawing at your thoughts, eating away at your body.

You fill with remorse and anguish. You beat down regrets as they run through your head. You dig deep, breathe in, and focus on the fight.

You live large when you can, knowing it won’t last. You retreat into hiding when you can’t.

Chronic pain and I are like tumultuous lovers – dancing a toxic dance and I fear the music will never end.

This moment is hard. There will be more of them. I hold onto the flicker of faith that it will pass, like the ones before it, and I vow to not take any second of my respite for granted.

It will get better. It has to.

Frustrated. 

This is a repost from my Facebook page. That’s where I seem to pour it all out…

I’m frustrated. This is going to be one of those long, full of too much truth for some, posts.

I started flaring in the spring. Always a possibility, I pretty much know how to handle them to keep them from stopping me. This one was a doozie. Wound up in the hospital in early June. Turned to medication to help, bounced around between different doctors to determine just what was the cause. In my head, it doesn’t matter – it’s all the same. Auto-immune. I have a list of diagnoses, in addition to MS that y’all know about, and I tend to lump them all together because the bottom line is the same – my body is attacking my body. 

It’s a helpless feeling knowing I am doing this to myself. Meditating, searching my body for the cause, the triggers that sent me down this path again. I eat better, read more, listen to the cues my body sends and drink more water, juice daily, buy flats, alter my household to accommodate my abilities, etc. Sometimes I cry for hours, other times I get really angry and determined. 

The “cure” for this one was the same as always – massive steroids. I despise this route. My bones are already showing major signs of osteoporosis from years of treatment. Is the cure worse than the cause? I was desperate though, so off we went. After about two weeks I was pain free, my body seemed to be healing. 

Religious with physical therapy, amping up my nutrition, I was on the way out….and then it happened.

I was changing into my pj’s on Friday and felt the all too familiar pain shoot through my leg. F*CK! I froze, afraid to move a muscle, fearful of the future, wishing I could just pretend it never happened.

Except that it did.

One by one my symptoms started to creep back. The steroids were wearing off, and my body was determined to “win” by returning to it’s self destructive mode.

On Monday I was released from Physical Therapy and joined the gym again. On Wednesday my doctor told me I was released “until next time”. We talked about my options going forward, as I’ve had my lifetime supply of NSAIDs, and am likely over the steroid limit too. It’s time to go back to experimental drugs he said, regular infusions, for life. There is ZERO I like about this. My doc knows how I feel and urged me to at least research and set up the needed appointments so I could roll when and if it was needed. I agreed. Thursday night I couldn’t lay on my side anymore, the pain was too much. This morning I felt beat down, scared, frustrated, and angry. I am jealous of every single person that can move freely. I want to scream for them to get off the couch while they can – to go do the things they want to do – simply because they are possible.

Because when that option is removed, regret is a beast. 

I struggle this morning with keeping a positive attitude, with loving myself as my body rebels. I have plans dammit, I don’t want to be stopped, or even slowed down. I want to play with my kids, go to work, take care of myself and my home. I want to be pain free and mobile. 

Yet, I am forced again, to accept. 

My relatively pain free month was simply amazing and all too short. It took about 2 weeks for me to mentally wake up and stop being scared of moving, scared of the pain. I realized I was conditioned to not do things even when they didn’t hurt any more. 

Just as I was breaking free, it’s back.

There has to be something bigger causing this BS. We, as a society, must look at the poisons we have readily available and feed our children with. Fast food is awful, we know this, yet we use pizza and ice cream as a treat. Exercise is good, yet the average adult spends 5 hours a day in front of the television. We are always looking to do what is easy, not what is right. I stoutly believe that the rise in autoimmune issues is a direct cause/effect from our lifestyles. While not intentional, you cannot deny the numbers.

Why isn’t salad cool? Why are Frosties 50 cents and a cold pressed juice 10 dollars? Why do people talk about binging on a TV series more than upping their exercise routines? The general vibe is one of instant gratification with no thought to the long term outcomes. 

It’s tough to fight this on a daily basis. I know my tribe is out there – people who eat well, move their muscles, feed their minds and bodies positive things. I don’t want to be in the minority any more.

I started a massive facebook friend delete campaign through this last flare. And it is freeing. If we don’t vibe, it doesn’t make it in my circle any more. I don’t have the extra energy to fight the bullshit, I don’t need help making poor choices. 

Not sure where I’m going with this, other than to simply release these thoughts from my mind and share with y’all a little piece of what has been going on in my world.

I know that I am not alone, so I am raising  my hand. 

Who wants to join my #levelup #kindgang? Where we push ourselves to be better, not blitzed – where we support instead of compete with one another – where salad is cool.

One thing I have learned over the years – that still holds super true today – if we are nice to our bodies, they will be nice to us. This applies to everything – food, movement, books, music, mindfulness. Have your actions in alignment with your goals. Hell, have goals. Be purposeful with a plan. Save your pennies, feed your mind and body, hug your babies, and love your people.

Everything else is just noise. 

xo