November

The night of November 14th, in the early morning hours of the 15th my husband had his 3rd heart attack. It will be 5 years next month that he had the quadruple bypasses open heart surgery. His first heart attack was at the age of 37.  He’ll turn 50 in 2 weeks.  This time 2 of the bypasses had been destroyed and the other 2 were saved by stent placements. I’ll never know for sure if this attack was brought on by his return to work just a few months ago or if losing his health insurance October 31st due to his return to work was the cause. Taking care of himself better could have also reduced this risk. Losing the insurance also caused him to stop taking the numerous heart and diabetes medications in addition to the other preventative for blood pressure, cholesterol etc that he’s been on over the years. He returned back to work 4 days after coming home from the hospital. I’ve been filled with worry because I don’t think he’ll get another chance. I’d be devastated to lose him. He’s lucky to have survived 3 already. I’m working on those fears.

This year I’ve not been involved in advocacy as I had been in the many years before. I resigned from iPain in November of 2016. This was due to me needing to take care of myself. Movement, stretching, holistic remedies, supplements. I recently added Turmeric root for it’s medicinal properties including inflammation. I’m not on any pain or related medications still. I use Valerian root, St. Johns Wort, Magnesium, fresh ginger root, the Turmeric now, dandelion, nettle, B12 and B1 and B6 when I can have them on hand. I’m also taking Estroven. While there are times I wish I had a pain reliever it’s the Narcolepsy medication that’s hardest to go without. Losing insurance or not being able to afford it can put people in a hard place. I’m much more tired being off my CPAP but I’m managing all of it the best that I can.

Last night, I deactivated my Facebook again. I do get defensive when I’m scolded for not doing for other people when all I’m trying to do is for myself and my family. I understand that not everyone knows that I’m not an advocacy director anymore, yet this is not my fault either. On one hand I’ve repeated it enough already this last year and on the other some have told me over the last few days how they didn’t know at all. There was a sense of peace in that I shouldn’t be lip lashed for what others don’t know.

We all have our own stories which are born of our personal experiences and our experiences among others. These are what make us who we are. How can we expect people to understand our pain, or our hardships and in the same breath deny someone else of theirs.

I was going to go to my parents in Georgia next month, but the plan now is for me to be there in April to celebrate their 20th wedding anniversary and renew their wedding vows. I’ve never seen their home or been to their newer town. I have been to their previous home there in Waverly Hall. My parents aren’t my only family there. I look forward to seeing as many of them as I can.

There is an extended sense of isolation with the deactivation of my Facebook. I’m using my husbands little netbook now and Friday I’ll try to to wipe the hard drive of my laptop and install a clean copy of Windows. Must have been a really bad virus as it won’t repair, restore, or even reinstall the windows copy on the drive. If that doesn’t work, well heck. It is what it is. I do have my Kindle.

Breaks are good things.

Say Thank You

 

Thank you.

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NERVEmber + Goals for 2018

In a Facebook post that read ‘

Goals for 2018
– Continue healing all aspects of myself.
– Continue to learn and utilize holistic remedies
– Continue post Gohl Method protocols
– Start off slow and end big.

 

I could have shared more because there is more. So much more I want to accomplish. Yet because of my inability still to commit, I left it at that. If the above is all I achieve, I’ve achieved it all.

I’ve spoken to several people after me who have been traumatized by the healthcare system. Traumatized in ways that isn’t the logo’s promoted for these services. Humanity.

There isn’t anything humane in treating people, patients so minimally that they feel worse after seeing you than they did when they sought your help. I don’t know for certain if it was the CDC ruling, or the President declaring an emergency on opioids but I do know for certain that inhumane attitudes, remarks, and accusations is not the definition of humanity.

I would have rather had a physician tell me no, dismiss me not knowing what to do for me than have had them assume I was someone I wasn’t.

I’ve spoken to people who did everything right in their care, for their life, and still everything went wrong. A person who is at the top of the advocacy chain, admired by many, and still was treated so poorly that trauma, PTSD has resulted.

Is there a word, a code, a safe word someone can use when we’re so serious about our pain, state of mind,  or knowing better for ourselves that we’re believed?

There wasn’t for me. I reserved that 10 my entire life. And when I used it I was thrown away.

Now other people are experiencing what I did. Prominent people. The only thing I had done wrong if it was even truly wrong at all was self medicate with alcohol after the facts, amidst the denials, delays, and incompetence. This person doesn’t do any of that.

My road is still long but I see an ending for it. I have a long way to go in healing but I know I will. I still have the diseases, syndromes and so forth but because I was blessed with MLT and my own determination, I’m alive.

I’m listening to the NERVEmber posts and as much video as I can grab before my comp shuts down from trying and I hear the people talk about their much needed, lifetime care.

I don’t have that.

Imagine a world with no care from western medicine for whatever reason because it doesn’t matter why. Just imagine you on your own for your life. For your pain relief and your well being. From your symptoms and your uncertainty.

If you can you might understand me. Because I’ve gone through it, I understand you.

It may have taken you a moment to feel me and why I fell so hard, but you do know now because you’ve went there too.

After my decline I asked for 1 year. 1 year to heal myself, progress, find me, learn me.

I thought I would be good a year later.  While my year began October 24, 2016 in a sense it begins toward the end of January of 2017.

It may not seem it from onlookers, but i have come far physically, mentally, emotionally, and spiritually.

I wanted to try to find my way back into some advocacy. for 2018. I don’t know yet.

I’m not certain yet because it isn’t always over when we want it to be. Sometimes it takes a lifetime.

All I know for sure is that I’ve been through and overcome obstacles that many believe aren’t possible.

Stronger Than Pain – Kurtis Ozra VanFleet

Medtronic INC

Arisen Strength – Shane Schulz

Gohl Method – Arik Gohl

You’re my only commitments.

 

I’ll try for you.

 

I start off slow and end big each and every day because I reach a new tomorrow.

That goal is my only priority. My ID isn’t just RsdCrpsFire for the fire of CRPS/RSD. It’s symbolic in living, thriving, the fires that be within ourselves. Passion. There’s always a duality in me.

I currently can’t talk right and for those who understood why I couldn’t 2 years ago, you might understand now. Otherwise, I won’t be sharing why.  Let me just say that if I do any voice, phone calls or videos that I’ll have a lisp. My sound, voice and speech will be altered. I’m okay with it. I have to be. This video doesn’t contain that problem.

Enough said. x