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Zebra Warrior meets the Queen and Royal family.

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Yesterday ......while in Kansas City Michael and I drove over to the Jack In The Box for the possibility of getting something to eat. we happen to be pulling in behind a Garda security truck. The parking lot was completely full except for the two handicapped areas and A few spots adjacent to this one. The driver of this truck came to complete stop blocking both of the handicap parking spots got out of his truck and headed inside. I rolled down my window and as a driver got out of the truck and while he was looking right at me I yelled to him that we needed to park there could he move his truck but he continued to walk towards the entrance. Another customer walking in spoke up and said “didn’t you hear that lady she needs to park there.” You could hear him with no problem say this. The truck driver then hesitated but stopped turned around got back into his truck and moved it forward just enough for us to pull in. However he was blocking several cars. While sitting there I got a phone call and we decided to go somewhere else to eat we sat in that spot at least 10 minutes while the driver of the truck was inside. When he came out he had his lunch in his hand. This man a Garda employee Seem to have total disregard for anyone else when he was parking. He didn’t think twice about blocking the handicap parking spot actually two handicap parking spots. Apparently he wanted to make sure he could get in and out of the restaurant even if he blocked other people from being able to leave the restaurant. I really truly believe that this man would not have moved his truck if the bystander had not said anything. Because he had chosen to pretend he didn’t hear me while looking right at me. I think what got me more than anything was when he got into his truck I thought for sure he was going to park in the other parking area but instead he completely blocked several other customers.

They say “employees are the face of the company" I wonder if Garda has clue that this employee shows such disregard for other people while representing their brand.

I put this photo together so you could see what we were seeing. I was only able to get a photo of the back of the truck not him nor how he was parked. My hope is that other people will speak up just like that bystander did. My hope is that Garda at least counsels this employee for his actions.

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attention

please reblog this if any of the following things apply to you/your blog, for i would like to follow you and most likely be your friend, thank you have a nice day

• disabilities -especially eds and pots • any positive posts or encouragement • personal posts • aesthetics (nature or otherwise) • actresses/fandoms • support blogs

thats all i can think of but definitely reblog if you are a spoonie, im not following nearly enough people!!!

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Another ROAR worthy topic

But first a little history 2014-2016 my pain was almost out of control mainly due to the fact couldn’t keep pills down and the liquid morphine had begun to bother my stomach. So I went on the fentanyl patch first 15ml, 25 and went as high as 50ml every 72 hours. November 2017 I had Esophagectomy and was on high dose morphine and OxyContin for the breakthrough pain. It got to the point I could barely function on the doses. I was zombie like but was bed ridden with pain without it. After a year of constant ups and downs my PCP finally listened and put me back on fentanyl now 25ml every 72 hours. Recently, within last year, diagnosed with A.C.N.E.S, Abdominal Cutaneous Nerve Entrapment Syndrome and confirmed a diagnosis of ATN, Atypical trigeminal neuralgia. I wanted to give that history because now one of my pain specialist is prescribing me a medication called Nortriptyline.

It’s my experience that Responsible opioid patients don’t seem to develop a ”opioid use disorder” which is nicer way of saying addicted. Many are like me. I’m actively involved in my care, very tuned in to my body. I’m very aware and conscientious about my use. I manage my pain several ways such as pain creams, heat, ice, mindfulness, meditation, distraction hobbies and other non-opioid medication. I'm pretty comfortable talking about how I manage my pain. The VA was one of the first to jump on the CDC guideline bandwagon. I’ve had a “pain contract” for years. At first it affected me a little it was irritating and inconvenient to have to do a pee test but it was required. The VA became better at pain education and teaching alternative methods. Of course it’s not all rainbows and unicorns but addressing that would result in a novel length post.

Reason for long story version. She actually addressed an elephant in the room issue that none of us who manage pain on opioids like to discuss. Overdose! Something mindful opioid prescribers take offense talking about hence the elephant. She was surprised no one had discussed the possibility with me considering my medication history. Of course I automatically wanted to say, how dare her suggest such a thing! But I was actually grateful almost relieved someone had smacked the “elephant in the room” because I had thought about bringing it up. I was too scared, I thought what will my doctor think? Will they want me to stop taking opioid just because of the stigma or will they think or assume I have a problem because I’m bringing it up. I also felt it would never happen to me so why bring it up.

She talked and went into detail about overdoses and how they can happen to anyone. She explained that mistakes/accidents happen more often than I probably know. Certain medications can intensify opioid affects or things like overheating (hot tub or heating pad use) She brought up the fact I should have on hand for such a situation Narcan Rescue Kit. That my caregiver, my hubby, be aware of symptoms and how to use the kit. In addition to discussing the possibility with immediate family and the availability of the kit.

That’s when I came to the realization that the my fears had actually been part of the problem. I had avoided even thinking about it happening to me. It actually would have cost me my life. So that’s why I told the long version of this. Many of us don’t talk about politics, sexology or religion because of the stigmas or controversy usually associated. Yes, it’s difficult for US; legal, responsible or cautionary opioid prescribers to bring up the topic of overdose for many reasons. But we have to and must do it. Talk to someone about possibility of overdose and get a kit.

Keep Roaring!

[roarimazebra]

My love hate relationship

UPDATE for April (so far) lol

My LOVE & HATE relationship

Not a lot is changed for me medically when it comes to my body especially my Gut drama. I still seem to be on the “losing weight got to gain weight roller coaster”. Thing is there still is no solution to any of the stomach pains and cramps or difficulties of eating etc.

As of right now doctors are trying to figure out how to make me feel less nauseated, less pained, less everything and not have so much bile reflux so that I feel comfortable enough to eat. I’ve had an increase acid reflux which actually they called bile reflux due to having the Esophagectomy I finally feel as if I’m sleeping in the right position to prevent having any throwing up episodes or regurgitation.

So Wednesday I will have yet another EGD this one to place a bravo capsule in my esophagus to measure pH levels. I will have that in there for 48 hours with a little manager on my hip to record the findings and return it on Friday and then we will go from there.

Reality of things is this I absolutely love food but it seems to hate me. I love the cook food, I love the flavor of food and I love the smell of food and I love to eat food but it does not love me. When you have the G.I. issues that I have eating is a gamble all on its own. it’s a crapshoot every time I eat anything even when I’m on the feeding tube. It is so difficult to explain to people that I can only eat about a cup to 2 cups of food in one sitting because I’ll start hurting, doctors think this is actually “A.C.N.E.S.” A nerve entrapment disorder. I also have had so many surgeries that I have adhesions that could be causing the pain and it doesn’t make any sense to remove the adhesions because more adhesions can occur. I have to be choosy about what I do eat and when I eat it for several reasons. One them is because my glucose levels seem to have a personality of their own. I never know if I eat too much of something to make my sugar go low or high. Then I also have IBS D/C depends on the forecast that day. Because of IBS I also never know what is going to make my Gut hurt More than it does on a regular basis. Almost always when I eat something within a short period of time I have to go to the restroom. I constantly have sharp abdominal pain cramping bloating gas all different types of bm.

I think once the house renovations are done we sell the house and we move I can concentrate more on my diet although I concentrate on it right now. Maybe I can find out exactly what does what do you mean win by traveling there and focusing on it. There are plenty of apps that I’m using it or help me monitor my glucose my food intake pain levels etc. I really do not like complaining about my life and the problems that I have especially the medical problems considering are so many people out there that are far worse off than I am

The thing is though I feel like I’m starving all the time but I’m not hungry all the time. Like I said a love hate relationship with food and my body is my worst enemy.

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I decided it’s time to share these again. At one time there was only 30 if you go the Ehlers Dalos Society page. These are random and numbers don’t necessarily match other versions of this.

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I love it when I am able to play in the dirt...besides I’ve got to work on the curb appeal!

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https://pin.it/ygo2u3rmzdzd3a

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“Horrendous”

https://www.painnewsnetwork.org/stories/2019/3/12/cdc-guideline-horrendous-impact-on-patients