🦋I don’t comment on a lot of TV or media . You may have your opinion on “Afflicted” and that’s fine . 🦋This is mine.
In a world where good portrayals of illness and disability in the media are rare, “Afflicted” was a massive disappointment. Rather than raise awareness for different chronic illnesses, it seemed aimed at healthy people as a source of entertainment, and a way to confirm any pre-existing doubts about the validity of many of these afflictions.
If you haven’t watched “Afflicted,” I do not recommend it – whether you’re healthy or chronically ill. It is not a responsible representation of the chronic illness community and, in my opinion, does a lot more harm than good. Going forward, I hope filmmakers and anyone involved in creating media about illness or disability does better. Employ people with health issues. Ask those of us with health issues what type of content we would like to see. And treat people, sick or not, with the basic compassion, respect and dignity we all deserve. We need to do better than “Afflicted.” 🦋💜🦋💜🦋
In a world of pain where the path we walk is difficult enough to navigate, we don’t need TV drama to add to the obstacles that we overcome on a daily basis.
We have a hard enough time not stumbling on the path we have to walk. Our path is difficult and this film just makes it uphill and having the “non chronic” community see us as “head cases”is just one more pot hole in the chronic illness road we don’t need in our fight for wellness.
I am fighting for my wellness and information to others .
Seriously, I #think someone stole about half my #spoons !? Whom ever is responsible for them, please give them back. I won’t press charges, it’ll be between us 😉 Lately, I’ve got NOTHING in me to do ANYTHING. And when I do, I’m paying for it with my sugars or #addisonsdisease ! I know you shouldn’t bring on negative energy however I also know my body and I really feel like there’s something not quite right. Thankfully, I’ll be seeing my amazing #endocrinologist next week so he can run more tests. The #spoonie#life gets scary, eh?! Not knowing if or when something else health wise will appear! Obviously, it’s not good to stress about these things...now, if you could only #addisonsdisease and ocds that. I really really think we should start a #spoontheory#challenge ! You know how there’s the ice bucket challenge?! Well, instead people have to live in a day of a #spoonie , they get a certain amount of spoons and need to figure out how and where to use them. By the way, I can’t take credit for this idea. It was a friend of mines 😉! I don’t know how we’d get it started but I think it would help people understand us a little bit more, no?! #chronicillness#chronicpain#addisonsdisease#pmdd#ptsd#tbi#fibromyalgia#arthritis#hypoglycemic#hypothyroidism#add#anxiety#depression#invisibleillness
Studies have shown that the more we take ownership of our condition, the more engaged we are in maintaining behaviors that help us live better while living with pain. An important factor in having the confidence to take this ownership is self-trust. "If something doesn't seem right, I trust my gut.”
"When I was first diagnosed, I kept my mouth shut even if my doctor said something incorrect or wrong for my body. I'm learning to trust those feelings - my intuition - and speak up." 💜🦋💜
Here are some wisdoms I have on self trusting my gut while living with fibromyalgia • "Having a good relationship with a doctor you trust and respect can really help you through those hard days. You said it yourself that their approach isn't working for you, but have you told them what does work for you?"
• "Let me emphasize, YOU are the patient, you have to live with the pain, and if you aren't getting the treatment you need, which would be the meds you know were effective, then you have the right to good treatment. Switch Drs."
• "If your doctor says there's nothing more he/she can do for you, find a new doctor. After living with chronic pain for 17 years, I've learned that I have to advocate for myself. I do my own research... I also make suggestions for my treatment, based on everything I've read. It's my body, I know best how I'm feeling. I don't try to 'play' doctor, of course, but after decades of pain, you do what you gotta do to try to get results."
When dealing with your pain “You” know what works and doesn’t work and don’t be talked into conversions by anyone that diminish that fact and leads you away from self trust.
The Guaifenesin Protocol is my self trust gut check.
#fibromyalgia#fibro # #cfs#me#chronicfatigue#chronicillness#chronicfatiguesyndrome#chronic#spoon#spoonie#spoons#pain
Here’s my update from Vandy!
It was great going there. Everyone was super nice and they already had my whole history so I didn’t have to start my whole story over from the beginning. The NP, Jordan, was super nice I loved her; I don’t know if anyone else here has been to see her! She was so caring and took note of all my symptoms and we talked about everything that was bothering me. It was really easy to relate to her and she understood what I was going through, which is so different from most doctors, as all of you know. The testing was hard: I was connected to all the usual wires and monitors. The three tests were deep breathing, Valsalva maneuver, and the dreaded tilt. I’ve never had a tilt before today and it wasn’t as bad as I thought but it was still pretty rough. I didn’t pass out, but I’ve never passed out from POTS. I did feel super weak and completely out of it and I had my eyes closed basically the whole time. My legs felt like they would give out about halfway through the test and I started to skip down the table a little. But, my results were extremely consistent with POTS, so I got my actual official diagnosis today. We were pretty sure I had POTS, but my doctor at home refused to call it POTS, just autonomic dysfunction. So after 1 year and 10 months, a FINAL diagnosis. Jordan has decided to switch from Coreg to Propanolol. Who is on Propanolol? Has it worked for you? I’m also stopping my Northera cause it’s not really working for me. She recommended the Levine protocol, I don’t have to follow it so strictly, just trying to get some exercise in. I’m also gonna try Normalyte, has anyone tried it? Favorite flavors? I’m hoping all of these suggestions will work!!!
A couple of musts for us while weaning have been these: @munchkin_uk spoons and suction bowls. The spoons are lovely, soft and easy for baby to use too. Suction bowls are a must, we had a couple of spills before them.
Years ago, I stumbled into a store in Brooklyn with @yonidoron's family. It was pretty minimalist for me, but then, I noticed these plates and cups and most of all, spoons. They were gorgeous. Covered in geometric patterns and gold, it was the kind of maximalism I love and couldnt find much of in brooklyn back then. I was *kindof* in love -- especially with the I'd forgotten my purse so I got the name of the artist, @suzannesullivanceramics and decided to get . Well, finding her wares wasn't as easy as I thought it would be. But the last package I received before I left Cleveland was from Ms. Sullivan and my mother in law. And I was right to get her name because it makes me smile every time I look at it. Be it a painting, a sculpture or a spoon, a good piece of art can do that...
I hope you enjoy this series of competition between 2 good brands. I do them with all my love so you can decide what is best for you! Please leave ME lots of comments because you made my day when I read them!