My Name is Suicide

My name is Suicide. People don’t know me they only know of me. I’ve kept my identity secret because of the shame my name reflects onto others. There are many who share my name and like other names there’s more than one of me. I’m not unique. I’m unique in who I had become. I’m beautiful and I ride or die in a world filled with pain and chaos. I sometimes leave behind the ones I love a little too much for hope in something better, to put my own hurts behind me or to help from somewhere else. Other times the decisions and choices I make leave lifetime scars that I didn’t consider when I…

For this I’m sorry.

My name is Suicide and it wasn’t your fault.

~Twinkle VanFleet, Stronger Than Pain.
Sunday, May 21, 2017. 8:10 a.m. PST

Springtime


Springtime always makes me happy. Like many of us the winter months are exceptionally painful. I’ve often felt as though I was always starting over. I’ve changed that mindset to “I’m continuing on” instead. 
This last year has been fairly rough. I’m still on a quest to find alternative natural pain and symptom relievers to help manage me. It’s been over 3 years now without any pain management other than myself and 2 years since I’ve gone to a primary, my pulmonologist, sleep specialist or anyone else. 

I suppose in a way I’m pretending to live in a world where western health care services don’t exist. A world where if I want to live, survive, it has to be by my own self will. 

I’m over believing care should be anything else for me. I tried that again last year and a new pain specialist was denied by my insurance adjuster. My attorney, without notifying me denied to appeal for me. That’s where I am. If I thought otherwise depression would take over. I haven’t had any suicidal events since January of 2017.

Spring is when I ready myself for outside home PT. That little pool is my sanctuary. The place where I work tirelessly to improve motion and regain physical strength to help myself though the winters. It offers enough weightless activity that I can move beneath the water where outside of it is difficult. 

I’ve continued to stretch indoors as able.

I have extra incentive to work hard on myself again this summer. Our son announced his engagement to Samantha Castillo. He and Sam will be marrying in January and my husband will be walking her mom and I down the aisle together. Ozra is getting married where he was baptised and where my husband and I renewed our vows for our 25th wedding anniversary. 14th Avenue Baptist Church. 

6 months ago tomorrow my husband had his 4th heart attack. Earlier that day we laid my nephew to rest. 6 month ago today I turned 50. The celebration was in his survival. I’ve been with him since I was 17. I can’t even, … 

Anxiety and fear overwhelmed me for months. He’s stable now and I thank God for that.

My email twinkle@crpsadvisory.com is currently unaccessible. I’ve had this address for over 15 years and have no backup contact list to update individually. 

If you’ve been trying to reach me, please forward to twinklev.crpsadvisory@gmail.com in the meantime. 

Advocacy related to twinkle@strongerthanpain.org

Happy Springtime.

Precious Gifts

On Christmas eve husband and son went to the farewell Raiders game in Oakland. I wouldn’t make that. I’ve been in a flare. Instead, I got our daughter Rikki who came from Texas for me. Spent the night with her. Husband met up with us on Christmas day and we watched the movie Christmas Chronicles together. 


When I found out our daughter was in San Francisco I panicked. At that point I hadn’t had a bath in nearly a week. 
It’s just a winter rumble I’ve been telling myself. Come summer you’ll be fine enough again. Summer is when I bust my butt doing water PT, stretching, movements that are more difficult without weightless benefit. 

Trading a bath in order to make our food is what I’ve needed to do. Eating out or buying fast frozen foods is a rare option for us. That crap will disease us too. 

My husband gifted me a diffuser and essential oils. I love it. 

The gifts I’m interested in are always in the form of possible pain or symptoms relief. I’m fond of aroma therapy anyway.

My Rikki gave me a dozen CBD/THC cannabis capsules. Helpful for spasms and similar to a muscle relaxant for me. 

Made a little ham yesterday. Now I can rest the weekend with food ready. 

When I thought I’d be alone Christmas eve, my plan was to turn Facebook back on for a bit to be with family even at a distance. I haven’t done that yet. Tomorrow will be 6 weeks off it. Maybe New Years. 

Erik and Ozra had an amazing time at the game and I had an incredible time with Rikki. 

New memories and precious gifts.

Encouragement

Pieces and parts of lines running out of time for rhymes. 

Was in bed by 6:30 p.m. last evening. Woke near 11:00 p.m and watched a movie with my husband. We had our cheat treat pizza earlier. 

A good friend who I love dearly messaged me after midnight. Suicidal ideations from intense chronic pain. She doesn’t know how to continue living this way. How would I encourage her. I’ve been there too many times myself. 

I certainly wasn’t going to shame her or make her feel worse. Can’t really tell people in this state of mind to stay, nor can we somehow insinuate it’s the wrong thing to do or think of. It’s not wrong to not know how to live in pain. Physical, emotional or both. 

All I could tell her was I don’t know how we live, survive either, but we have to keep trying. Just try.

Ironic that I was feeling and thinking the same way yesterday. Not suicidal but the thoughts kept replaying, how would I too make it into the future. 

I do what I told her, just try. 

Encourage without stigma.

51

Today’s my husband’s 51st birthday. Tomorrow is our sons concert set. Unfortunately, I’m too unwell right now. I won’t be able to go tomorrow. Last time I ended up sitting on the venue floor, but at least I was there. My husband will be there for Ozra for both of us and if he remembers record it for me. Ozra’s performing all new songs.


I take a step with my right foot/leg my spine seizes and feels like my left arm is being torn from my collarbone and neck. I’m not sure which of my ailments is the cause. This has happened before in my right arm and lasted over a year. I lost part feeling on that side in 3 fingers, part hand, wrist, up to elbow as a result. 2 fingers of left hand, part hand and wrist over 6 months ago.
I middle finger pick my phone or Kindle to type. Takes a long time yet it’s possible. Not easy cooking, prepping food, yet I still manage, mostly.

Went to bed early last night in order to be able to make my husbands dinner today. Not happening. I’m bummed out over it. Can barely move without severity. Painful to lift my head too.

Plan is to soak in an Epsons bath soon and wish for the best. Find a movie for us to watch and order a little pizza for his day. 

We’re alive and we’re together and that’s what matters the most.

Celebrating life.

Weekend


I’ve been meaning to do an MLT update. I used to be an average 7-9 on the pain scale using various prescription medications. Since MLT treatments and my post protocols, home PT, I’m a 6-8 with fewer flares. I’ve only reached a 9 a dozen times maybe. The 10’s haven’t returned. 
Depression is stable, suicidal ideations are minimal, suicidal thoughts are nil. Mobility is limited, yet my years of discoloration, massive swelling and lack of blood flow is decent. Atrophy is better. Stretching I learned from the Gohl Method (MLT) continues to help keep my tissue, fascia, and muscles from binding. 

I do struggle with controlling anxieties. Random panic attacks that don’t always accompany a trigger.

Even on my bad days I sweet talk myself and sugar coat my issues to make it through. It doesn’t always work as much as I wish it to yet negative self talk doesn’t help either. Pain is in my body and mind. It can’t have my spirit too. It’s a continuous process. My spinal cord stimulator helps disguise those pain signals, I have to disguise my emotions. After MLT, I was able to keep my SCS off for several months. Haven’t been able to accomplish that again since the summer of 2017. 

People lose their minds from pain everyday even with medications. I’m trying to keep mine without them.

Spent the day with my daughter Rikki yesterday. Hours in text messaging.where she helped me Christmas and birthday shop. Next weekend is my husband’s birthday. I sent her Amazon links to order for me. Maintaining pain levels is hard enough, even online shopping is a chore for me.. Grateful for her time, energy and assistance.

My Workers Comp care is still up in the air. Nothing since February of 2016. I found a doctor and was able to see him once. Further care was denied. I have lifetime medical for the January 2001 injury that led to CRPS. No medical at all though. It’s not so much that I think I’m entitled to care, I can’t even get other care because of it. My CRPS and SCS progress, progression, ability, instabilities and setbacks should at least be being documented. 

My husband headed to work about an hour ago from his weekend off.  

I just took a Naproxen and a dose of Monkey Mix Kratom. I ordered Burdock Root with my shopping orders yesterday. 

This will be the first time using it. It should arrive in a couple of days. 

Happy Monday.

Menopause

The worse natural event I’ve ever been through. I don’t think it’s over yet. I admire the ladies who come through it relatively well and for those it’s  rough on I feel ya. I won’t be able to tell when I’m done since I had the Nexplannon re implanted in June of 2017. The year long period wasn’t working for me. Ha! Took about 6 months after that to cease. It’s good for 3 years. I’m not using it for birth control but rather symptom relief.

My mom told me today that the process causes much moodiness in most. I can’t tell if my emotions are part of this because I’m an emotional sensitive creature anyway. The.good thing about hot flashes in winter is they keep me warm until I need a cold shower. Kinda funny. 

I’ve used Estroven and Valerien Root specifically along with the numerous other suppliments I take. I’m not entirely sure what else relieves those symptoms. I’m just ready to be done with it. It’s been over 5 years already. It’s exhausting. 

Dinner is in the crockpot. Few thin slices of tri tip. Serving with veggies and a salad. 

Yesterday’s copay was $195.00. Ouch! They let us pay part and will bill the balance. 

I hope he’s having a decent pain day on that leg. Pain medications are rarely even prescribed for those type injuries anymore. Ibuprofen was suggested. 

Other than my female symptoms it’s a fairly good pain day for me. 

Any suggestions on other symptom relief for pre or full menopause would be appreciated.