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. 💖


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.

Cape wearing 101

I like to think of myself as a superhero – capable of anything I set my mind to, limitless – because of this, I get to experience so many amazing things! Every once in a while though, I encounter kryptonite. At these times I have to listen to my body and do what’s best for the long haul, think big picture. Pain has been creeping in lately and I’ve largely ignored it. Last night my body said “basta!” I tried every trick in the book and it wasn’t working and I was left with a decision: take traditional medicine and be wiped out for the better part of a day or continue to endure and likely end up worse losing more time as I push beyond my breaking point.
Now y’all know I shun modern medicine, not wanting to get caught in the doctor trap where side effect after side effect add up and you don’t even know what the original problem was. I am pretty adamant about letting my body heal itself by taking better care of it – treating it like the miracle that it is….at the same time I am totally grateful for having access to amazing health care and the people who dedicate their lives to the cause.
So at around midnight last night I had a sit down with myself and decided that the best course of action was to take medicine to allow my body to chill the f*ck out and get to work healing. I knew it would knock me out for at least 12 hours – however I am no good to anyone if I can’t stop crying or lose mobility completely. So I emailed my morning appointments to let them know I might not be available and swallowed a pill and a little pride at the same time.
T tried to wake me up in the morning. Poor guy only wanted me to feel better and was completely helpless – he left a cookie and a cup of tea on my nightstand, turned the ringer up on my phone so he could check on me and kissed my forehead on his way out.
I woke up around 11am. Pain level dropped significantly and my body was full of gratitude for the rest. It took me about an hour to fully wake up – and during that time my amazing team had my back. I decided full disclosure was best rather than hiding my weakness and we shared with all who tried to connect with me what really happened.
Sometimes when you have the label of a chronic disease you want to hide it, thinking it’s a weakness, when in reality it is just another piece of who you are. I truly believe if we all shared our realities – that everyone has their “thing” – and we’d find strength in coming together – solutions based on our experiences – and in the end be stronger together.
I look at the pictures from last night and I can see the pain in my eyes, my posture looks awkward as I navigated all movements while doing my best to avoid causing my nerves to jump, stab, and burn each time. I get a little sad when I can see my suffering. I know I am not alone though, and I know there is a blessing in everything if we just look for it.
I’m not 100% today, I am a lot better than yesterday. My mind is clearer and my body is no longer screaming. I know I did the right thing at the time.
So today I want to shout out praise for the medical community, give strength and high fives to all who walk through life carrying an invisible cross, and continue on my path with heart and eyes wide open.
Now it’s time to dust off my cape, straighten my tiara, and get back to life. ❤
Much love kids, thank you for being a part of my journey. xo