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txrepub4God
07-31-2015, 07:18 AM
Hi all! I know I'm really new here and not many know that much about me. The basics are, I'm 42, married to my honey for just over a year, I didn't have any children until I married & now have 2 adult daughters and 1 11-year-old girl, my babies have always been my rescue dogs (4 of them), I live in Texas and am currently fighting for Social Security disability. That's a journey and blog all on its own! :) I spent most of my adult life as an administrative assistant, but had gone back to school and was a phlebotomist when my health declined so bad that I had to quit working. I have been fighting the disability gods for my hard-earned money for close to 3 years now, and am currently on my 3rd appeal (saw judge, got denied, now going in front of Appeals Council). My honey is in the Air Force, so he gets deployed from time to time, which is definitely hard on me when I get hospitalized!

I decided to start writing a blog about living life with chronic diseases, as it seems like NO ONE understands just how sick we are when we tell friends or family that we've been diagnosed with a rare disease. If you tell people, "Hey, I was diagnosed with cancer," people immediately understand the seriousness of the situation and how deadly it can be. On the other hand, when you tell people, "Hey, I was just diagnosed with Wegener's, Addison's disease, IgA Nephropathy, thoracic aortic aneurysm, etc.," or any of the other myriad of odd diseases I have, they have absolutely no clue what you're struggling with and how serious it can be. Therefore, I wanted to write a blog for the family and friends of chronic sickies like us, so they can understand where we're coming from. You know, it's hard to explain severe exhaustion to someone that goes, "Oh yeah, by Friday after working all week, I'm so tired I can hardly keep my eyes open!" Ummmmm, no, that's nothing like severe exhaustion....but let me tell you what I mean by that.....THAT kind of blog.

Please feel free to come read up at http://teridinosaur.wordpress.com. My beautiful 93-year-old grandmother gave me the nickname "Teri Dinosaur", so I couldn't think of anything better to use for the blog site. :) She's my hero and my angel....I can't imagine my life without her. My blog is called "Living My Chronic Life". Would love to have you take a read - I'll probably update it about once a week. Thanks so much!

annekat
08-04-2015, 07:04 AM
I did read part of your blog, the most recent entry. It is very well written and gets the important points across in an engaging way. Now if only the right people will read it and take it to heart. Thank you for your efforts in writing this blog and getting it out there. I'll try to return and read more.... but it wouldn't hurt to remind us from time to time. :)

drz
08-05-2015, 02:26 AM
Your blog describes the challenges of Wegs very well and you have many more than most of us. Are you familiar with the "spoon" theory described somewhere on this site?

Birdie
08-05-2015, 07:08 AM
Your blog describes the challenges of Wegs very well and you have many more than most of us. Are you familiar with the "spoon" theory described somewhere on this site?

Been here a week and I've seen a bunch of new references to "The Spoon Theory." A mythical, unobtainable, ancient thunk by the Wizzard of Wegeners which holds the answers to all the questions of the universe, I assume... So I found it... My assumption from the comments I've read was not too far off. It's brilliant! Everyone should read it.

But You Dont Look Sick? support for those with invisible illness or chronic illness The Spoon Theory written by Christine Miserandino - But You Dont Look Sick? support for those with invisible illness or chronic illness (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)

Thanks,
Gary

drz
08-05-2015, 12:55 PM
Has anyone here ever used the "spoons" as a concrete aid to try explain to anyone what living with a chronic energy sapping illness feels like on a daily basis?

Debbie C
08-05-2015, 03:34 PM
Hi Teri and unfortunately welcome to the group. I read your blogs and they are very good, I should show them to my family so they have a clue.
We have a lot in common,for 1, I used to have a house right on the other side of PK Lake.I took my boat over to that side many times and hung out at Hells Gate ! I just saw on TV Sunday that they do cliff diving there.I loved living there. I will have to PM you to chat more so I don't hijack your thread. Take care

annekat
08-05-2015, 04:35 PM
Has anyone here ever used the "spoons" as a concrete aid to try explain to anyone what living with a chronic energy sapping illness feels like on a daily basis? I think I have tried a couple of times, but feel like they don't get it, or that I'm talking to a brick wall... so maybe I'm not a good storyteller and it is better shared by printed word. Or I can always just say, "I don't think I have enough spoons for that..." or "I've used up all my spoons", and let them start to figure it out for themselves.... then maybe they'll beg me to tell the story. Maybe I should print it up and hand out copies to all my pottery customers so they'll know they're lucky to be getting anything at all.

txrepub4God
08-05-2015, 05:58 PM
Thank you so much, Annekat! I'll definitely let ya'll know when I update it.

txrepub4God
08-05-2015, 06:00 PM
Drz, I have heard about "spoons" on a talk show once about fibromyalgia, but it was a brief statement from a fibro patient & I never really looked into the concept any further. I'll have to go look it up!

drz
08-05-2015, 10:22 PM
Drz, I have heard about "spoons" on a talk show once about fibromyalgia, but it was a brief statement from a fibro patient & I never really looked into the concept any further. I'll have to go look it up!

Just click on Birdie's link above and read it.

vdub
08-09-2015, 03:34 PM
I have to agree with the rest.... Decent little blog.... :-)