Hello, I wanted to introduce myself a little, I’m Tolly, I have MG/LEMS, Sjogrens Syndrome, Demelinating Polyneuropathy, Fibromyalgia, DDD, and other chronic debilitating health issues. This steemit site along with my other sites (Instagram, Twitter, Youtube, Facebook) and my website www.madebytolly.com will document my thoughts on various topics, my life and how my health affects my life. I hope to bring awareness and understanding. I hope I learn from you as much as you learn from me. The main reason I am doing this site is so after I am gone my children and grandchildren can remember me and watch my memories of us together. I want them to know I NEVER gave up. This is me May 2017.
On my personal blog (www.madebytolly.com), I will be discussing whatever topic or phrase that comes to my mind. Public beware....I apologize now for any remark that offends you in any type of way, I am not intentionally trying to offend anyone, this is just my thoughts and views...... I like to discuss anything and everything, the more unique and strange it is the better. I also would like to talk about life the good and the bad. My life, my thoughts, and just random things I think about throughout the day. Random topics and videos of my thoughts and events with my life. I like to discuss life the good and the bad. I will be putting post from all aspects of my life. It will have my thoughts, feelings, views, on random topics. I will be posting what I am going through with my health and Fibromyalgia. There is no set topic that will be discussed at any given time. Post will be added as often as I am physically able, it may be one a day or it may be a few days in between. The more interaction with me the more I know what to talk about.
My children, my grandchildren, and Champa (my best friend and Caregiver) are the most important people in my life. There is no set topic that will be discussed at any given time. Post will be added as often as I am physically able, it may be one a day or it may be a few days in between. The more interaction with me the more I know what to talk about.
If there is anything you think I should add just let me know.
Talk to you soon,
Tolly
If you like my work and aren't already, please follow me and check out my Instagram and twitter @madebytolly
Hello, welcome to Steemit.
@gracehills thanks for the welcome. I look forward to reading your blog.
You're welcome. I'm glad for your response. I'm sorry for the delay.
You're welcome. I'm glad for your response. I'm sorry for the delay.
hey! Nice to meet you ! Welcome to the Steemit Community, wish you good luck and a good start, ive send you a small tip for geting more follower , you need to follow me and come me on chat! :)
@upvoter1 Nice to meet you too. Thanks, I'm working on getting on chat now. I will follow you, I have so much to learn.
Hello Tolly,
And welcome to a great community. Took a look at your stylized website and that's truly an innovative idea. I know people who have documented themselves in different ways before they passed, recording their experiences on camera or writing them down in a memoir of sorts, but the website is a really creative idea.
Very awesome that you're able to give encouragement to several while under the stake of so many ills. Looking forward to your posts. Upvoted and followed.
@markis Thanks for looking at my site. I want my grandchildren to have many ways to remember me, I wish I had more photos of my grandmother. I would love to hear her voice again or see something she personally wrote about her thoughts on a topic.
Hi, welcome to steemit community... follow and grow together... @wordsmith777
Thanks, we all need to help support each other.
Hello fellow spoony. I suffer from fibromyalgia as well, as well as some other neuropathy, the specificity of which has yet to be determined. Along with many other health issues.
I also know what it's like to want to leave something behind, but I only have my husband to leave it behind for. When I die I will fade away until I'm nothing but strange out of date search results on search engines.
YouTube is such a SJW hellhole these days, there's a real high risk your videos will be taken down and lost. Same with the other sites you listed. Google also shuts down private sites for the same reasons. Even if what you're saying isn't even particularly offensive, free speech is dead on those platforms.
I would recommend using Dtube to upload your videos. It's connected to the Steemit blockchain. Meaning once you post it, it's there forever. There will always be a way to find it.
That's also true for your blog posts here, by the way. And comments. Even if you edit them, the original form can always be found. The blockchain never forgets. And there are third party methods to access the blockchain to view that information. Steemd.com is a really good one, but very tedious to use due to its lack a searching feature.
Thought you might find that information useful.
I hope you enjoy your time here on Steemit. If you need any help with figuring stuff out, please don't hesitate to ask me. Best way to make sure I see any questions you have is to leave them in a comment on whatever my newest post is or in a comment reply to a comment I've left on one of your posts. Because mention notifications don't exactly work right most of the time. Not even on eSteem.
If you're not already following them, I highly recommend following @marxrab, @hopehuggs, @girlbeforemirror, and @papa-pepper. They're really amazing people, and Steemit just wouldn't be Steemit without them. (Plus, @papa-pepper is actually a really big deal here on Steemit, lol. He's a real powerhouse.)
@novaatebatman thanks so much for your help. I will look into Dtube and its good to know that anything put on steemit will be here forever. Sorry to hear you suffer from so much too, chronic pain sucks!! Thanks for the offer of helping me if I have any questions, I may contact you with some. Thanks again for all the helpful information.
Dtube is permanent as well, as it utilizes the blockchain. Can't edit or erase fully, it'll always be there.
Chronic pain is miserable. Especially when you're under forty so doctors refuse to treat your pain and call you a drug addict even if you aren't asking for narcotics. Gotta love healthcare, am I right?
Please feel free to ask questions any time. If you want a faster response, you can contact me on Discord, I'm NovaAteBatman#8448. I also use Line, where I'm NovaAteBatman.
I see you unfollowed me. Perhaps that's for the best. If you change your mind and do decide to follow me, I warn you, I'm really damn strange. But I think you kinda have to be to survive these things. Or at least I need to be to survive.
@novaatebatman You are right about the healthcare system, no matter what they either think your lying to them or just want pills. I'm showing that I am following you. Are you sure you don't see me as a follower? I don't mind if you are strange, I am strange too.
Nice to meet you @tolly.
Sorry you have such a list of illnesses to cope with and glad your are here documenting how it is to live with them and despite them.
I’m going to tag in a friend of mine here that will be able to empathise @unspeakableme.
I’m following.
X
Ps. I found you under the #fibromyalgia tag. It doesn’t get used often enough at all.
@sallylloyd thanks and no it doesn't get used often enough. More awareness needs to be brought to these invisible disabilities.
Yes indeed. ❤️
Hello, welcome to Steemit, I am a newcomer here too. Hope we both find our paths here! :)
@oncyfia welcome and I hope we both find our paths here as well
Hi Tolly :)
Hi and thanks for reading my post
Nice to meet you, Tolly! 👋
I read that you are interested to join photo contests. Just follow @juliank and join his @photocontests by simply using his tags. Oftentimes I use #foodphotography and #smartphonephotography :)
You can find his long list of tags here: https://steemit.com/introduceyourself/@photocontests/readme
@steem-network Thanks, I am looking forward to getting to know many people in this wonderful community. I'm very excited that I'm here.