To Cut or Not to Cut

A few days before the debut of Hope Is True by iPain in Los Angeles on September 1st, I had about 6 inches cut off my hair. I chickened out on the spot from having it cut shorter and into bangs.

It’s still long and not exactly easy to care for since losing partial feeling in one of my hands, thumb and forefinger. My gripping ability. I haven’t stopped using that hand, in fact, I continue to braid as my own type of physical therapy. I can braid down, but taking them out is more difficult. Having long hair I can twist all of it up as needed. Having shorter hair and bangs may end up being more of an issue since I have spiral wavy locks, so with bangs I’d either have to straighten or …  yuck, I’m not sure.

A change would be nice but then you can’t have back what you cut off for a few years. And then my signature look with long braids are hasta luego, too. See ya later. Bye! Adios.

Oh the dilemma!

I don’t want to be in deep doo doo, shit, mierda, you know, ka ka.

But then I’m like shit is just shit and some shit can be cleaned up. Mostly. ~laughing

Choices.

Well shit!

sticker375x360-u2-image-source-redbubble

Image source: Redbubble

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Public Apology

I extend to each of you, any of you that I may have offended over the last year an apology. I’m not sorry because I did anything wrong, I’m sorry because I lost control of managing pain. I inclined my head to bullies, I smiled, and shrugged off any compromises. I shimmied on like I never heard, never seen it, and rarely did I admit to knowing it.

I’m really sorry that I let Facebook bring out the worse in me. I’m still trying to understand this for myself. I let it become a “I don’t care” platform to anyone who either stalked me for their own organizations or disliked me for the one I was with.

no-stress-adoptionstar

Reductions in stressers and triggers have me feeling so much better. Better able to continue on with strengthening myself, stretching, moving, healing, accomplishing.

I don’t want to care about what I let you see toward that end, yet I do. I don’t want to care about who you thought I was before it all. I will. I may not always understand why from your point of view but I understand from mine the persona I threw out. I think that I demonstrated fairly well by shoving everyone so far away and eventually giving people a reason to gossip with potty mouth words and pretty photos that I achieved what I wanted at the time. Disconnect.

I never wanted to get close to people, so I kept everyone at a distance. I would reply to the questions regarding CRPS/RSD, Chronic pain, SCS, legislation, depression that you asked, but I’ve not in all my years using the Facebook Platform engaged on a personal level with more than I can count on one hand. Only one person in the pain community knew me, enough.

Wow, I must have issues, right? Yes. I can’t do the gossip, drama, he said she said, did you hear what so and so did type of stuff. Why? Because I haven’t the time or concern for it.

Any relationship can be repaired enough for people to respect that agreeing or disagreeing on something isn’t what defines them, but instead that which allows them to proceed forward with an open mind. Learn from one another.

If was in an IM with only 2 or 3 people a day, exchanging 5 messages each. I’d never be able to do anything constructive, maintain pain levels, scrub my toilet. One has to always be available at some point, even if not on the spot, to reply, and then the conversation continues until it either trails off or is abandoned. For those of you who do engage all day long. Kudos to you. Friendships? Okay. Communication? Okay. Support? Understood.

Facebook; the place you can check into, but hard to check out of.

I’ve been running on empty with anxiety highs and shifting depressive moments this entire year. Trying to manage both chronic pain and narcolepsy evenly for myself. I did do it on my own. No one’s taking that from me.

I can recall pieces and parts of this year as if I was viewing an old 8MM reel of 2016. I can recall vivid moments, yet I’ve lost other memories and I really don’t know if I ever created them in memory to be able to remember.

That’s how the mind protects itself from trauma and perceived threats.

I’m not much different than all of you just uniquely challenged. Some of you the F word is in the first sentence, others, rude, opinionated babble lacking knowledge, certainty, or open mindedness to learn the facts before stating inaccuracies.

Hypothesis? Please do present with an educated guess before assumptions get the better of you.

Ad hominem;

Argue the topic. Don’t attack the person as an individual, you know, the people you judge without even a presumption because you know it all and per your perception they’ve done it all wrong, already? Attack the position, not the person.

Online is too much people at all given times.

Notice how I said “Too much?” rather than “Too many?’

Be good or be good at it! Choices.


Overcoming The Stress Response by Twinkle VanFleet 3/9/15

https://rsdadvisory.com/2015/03/09/overcoming-the-stress-response/


I don’t want to be associated with pain, chronic pain, illness, disability, any of it.

Not on a personal level.

I never did.

My denial was my acceptance all along because I’m still on my legs. I’m not incapacitated. I’m not in that corner by myself yet watching the world move and unable to move with it or be a part of it.

Today I found the wedding vows we wrote to each other when we renewed in 2012 for our 25th wedding anniversary. That was the first I ever walked down the isle to him in a Church ceremony. I’ve been his since I was 17. I got this! For us.

I’m sorry I showed you someone I’m not. I’m not sorry that it wouldn’t be beneath me to act in any type of way dependent on a situation.

I’m sorry too for those who couldn’t ever ask, but assume, and for those who knew they were inciting confrontation when they chose it. That’s where I had enough. That’s where I changed.

There’s consequences in choosing.

For all of us.

 

~Love and light

 

 

 

 

 

It Really Hurts to Hurt | Live On. Give On.

twinklev_onlygodcanjudgemeIt’s been a couple of days over a month since I came home from that hospital stay. I can’t say it’s gotten any better, in fact, worse in that I’m also now 6 days off of the very last medication that provided any relief and the only opioid based medication I was on in the first place. Let me back track to pre Hawaii and the honor I received by being a 2015 Bakken Invitation Award Honoree. I was already struggling harder that maintaining my average 7 (on the pain scale). I was to depart on January 13th. A week or about prior I knew or believed at the time that I couldn’t make that trip any longer. I made a non scheduled emergency appointment with my Pain Management provider, who attempted to help me. I had only been using BuTrans 5mcg/hour. I was increased to 10mcg/hour for 2 months. When my husband got me to the pharmacy, my 5 was ready. I put in the Rx for the 10 and didn’t pick up the already approved 5. Trying to always remain in compliance and thinking I was doing right by not picking up the 5, yet instead swapping it out for the new 10 backfired. (why would I try to get them both? I didn’t. That wasn’t the medical plan to have each of them.

I’ve been asked how Hawaii was and I’ll always say amazing due the achievements while living intractable pain that got me there. I never laid out in the sun, or made it to the beach, I never got to visit the cabana, or see the turtles. I went to Hawaii but didn’t get to “Hawaii”. My husband had the privilege to spend time on the beach on 2 occasions and have lunch with an agent of Medtronic. I didn’t.

Energy Pennies!

Each of us honorees were there for living with medical technology that had given us “extra life”. Extra life that let us give back selflessly and the ability to “Live On. Give On. I actually live with other forms of medical technology. An Auto Servo Ventilator by Philips that forces me to breathe when my brain shuts down the muscle that allow breathing in Central Apnea with Cheyne Stokes Respiration, and the Obstructive Apnea I have with it. Otherwise known as complex or mixed sleep apnea. I’ve had 2 clips holding me organs together. The injury that led to my CRPS over 15 years ago was a severe separation of my right foot, chip fractures, and tendon displacements. Either referred to as a mid-metatarsal separation or a Lis Franc fracture.

While my husband went to have lunch with the others, I was getting ready for my filmed interview. It was a hard day for me. That same morning was my Whale Watching Cruise. Each honoree was gifted an event of their choosing among a few choices. I chose the one that didn’t require any physical activity beyond getting to and from the location to each boat transfer for the cruise. I tried to walk the length of the beach upon arrival to get to the boat landing and I did! But in doing so, I set myself back. I had to use ADA beach wheel chair transport on the way back. When we all got back to the Hotel my interview was already waiting. The trip took longer over all. When we got back to our room, I had about 30 minutes to get ready and I used 10 or more of them to get off my legs and lay down. The clock was ticking, I had to change, and do something with my face. I didn’t wear makeup to the cruise. My husband headed for lunch and I got myself to the interview and back. It was that same night that we were having our awards reception. When I made it back to our room after the interview, I rested for an hour or so. My legs were burning so bad. My right side swollen and discolored, my left side could barely take it from carrying me. I had to do another change and get ready for the evening. Neither of the dresses I took was I able to wear due to the mass amount of swelling. I wore a blouse previously worn one other time. (Embarrassing but not everyone knew that I had). I’m not in many of the group photos because of inability, but I’m grateful for the photos I am apart of with a few special people that bonded in love, laughter, crying, and hope. Tanya, fellow honoree, Andrea, fellow honoree, Andrew, photography, Rich, Medtronic, Emelyne and Darren.

My BuTrans was picked up the day after returning home on the 18th. I attempted to refill Cymbalta and Zonegran on the 29th. The pharmacy said my doctor hadn’t responded to the fax request. In reality they had been denied by WC and I just hadn’t known it yet. I appealed via my PMD. Approved by another IME as being medically necessary February 16th. I still don’t have them.

2 months prior I had gone through similar delay of weeks, and before that. Always and abrupt discontinuation of either days, weeks or in this case nearly 2 months for 2 of them.

Can you imagine what it does to someone’s brain each time you go from something to nothing. What being on an SSNRI and anti seizure for over 10 years, yet coping through the adverse effects of on and off over and over again?
Can you imagine physical pain so bad that you aren’t just complaining or trying live anymore because you can’t? Can you imagine pain so visceral and crippling, you lose your mind?

I’ve known this pain before. It’s where all my piercing were born from. The diversion for pain to replace pain. I don’t often use the number 10 because 10 is meant to imply true inability to perform anything, the worse pain “imaginable”. Hospital bound, suicidal ideations, that’s 10. It’s not 11 or 20. It’s 10.

I don’t head for pills or opioid chase as some would like to believe we all do, my toxicology screens is and was negative for everything illicit, but it was positive for ethanol on Valentine’s day. I’ve been there before too, prior to ever getting into pain management in 2004. By the end of 2004, I woke up one day and didn’t drink again until 2012 and not to the point of intoxication and not again for another year. Gradually and after January 1st of 2015, I chose to drink when I wanted to, and not drink when I didn’t want to. January 1st was the denial and abrupt discontinuation of Klonopin 0.5, the reduction from 90 mg of Cymbalta to 30 and the denial of Lidoderm patches entirely as well.

The last 14 months have been a hell only certain people survive. I didn’t appeal those denials and reductions. It was the beginning of my decline in hope. I still had something left that couldn’t be taken and that was my Spinal Cord Stimulator which covers my lower back on down to my toes on each side.

Maybe you don’t like my politics or philosophies and maybe I don’t prefer your inaccuracies and errors in my medical records that I update each and every time I’m seen by anyone. Maybe you don’t prefer the thought provoking statements I make or consequences and responsibility topics I engage in.

That’s okay because I still respect your right to speak out against the pain you‘ve endured, perhaps you could afford me the same.

What good is the EMR (Electronic Medical Record) if it’s not used properly? In my recent hospitalization it showed I was on 11 medications, and I was injected with a medication potentially life threatening due to those errors which claimed I was still on a Benzo, BuTrans 5 and 10, Lidoderm, OIC med, Cymbalta and Zonegran.

I was only on BuTrans 10. The records only indicated a few of my diagnosis’ and left out important others. I’m not speaking of independent care or my PMD, I’m speaking of my primary health record. Dignity/Mercy Health.

The record shows that during that stay Morphine was prescribed, but denied.

Because of the medical record errors they gave me Cymbalta and Zonegran for 2 days which I had already been off for over 2 weeks. So when I got to come home I had to fall from it again.

As of now, I’m only on Lisinopril and Hydralazine for high Blood pressure. Atorvastatin for HC, and Nuvigil for sleep disorders.

Pain? You don’t know pain until you really want to live, but you pray to God to die.

And you don’t know pain until you’ve walked my shoes. Each and every worn out pair (not the ones you physically wear on your feet) but the shoes of life, struggle, being born with arthritis, PTSD x 3, DDD + Cervical, Diverticulosis (it is when flaring), CRPS 2, liver disease, reduced kidney function, female crap and all the others that would only take up space. Survival!

You don’t know pain until you keep doing for others to help them through, give them hope, change their lives, encourage them, love them, care-give when you can’t even care for yourself, yet you continue to put them before anything for you. I’ve been an advocate in one capacity or other for over 30 years and a writer for 40. I’m 48.

Friday evening it took over 2 hours to get myself out of the mind space I was in. That mind space that said go hit a wall, divert it, you know how. With the rest of me repeating to myself over and over #StrongerThanPain. “I’ll walk, when I cannot walk, I’ll carry myself, when I can’t carry myself, I’ll fly”

Late that night, my husband went and got me some generic Acetaminophen PM and another bottle of only Acetaminophen without sleep aid.

I’ll most likely never reach out again, but I’m thankful to Barby Ingle for when I did make it into a new day and I was able to talk a few her encouraging words assisted in the ongoing fight to live through it and with it, somehow. HOPE!

I’m thankful for technology and I’m grateful for those who humanize patients. Dr. Bakken, Dr. Duffy, and Susan Pueschel. I haven’t lost faith in my God, I’m losing faith in humanity.

As I said before, it’s all a Mirage, but I suppose it’s also part of the purpose.
PPP

I’m far from well, I can barely walk, my butt is bleeding, every part of me hurts not only from what I already had but from the injuries that occurred on Valentine’s day as well. A laceration/contusion of my head/forehead and face, deep contusions/sprains/strains/possible breaks of my hands/wrists, deep bruising arms, legs, back, butt. None of which documented at all. None of which are part of any record or care in those 2 days. Only my own/photos days later.

It doesn’t matter what caused it, how, or who.

Accuracy matters.

and…

#IHaveTheNerveToBeHeard

Godspeed!