Joey's Ramblings

Monthly Sticky Post - DECEMBER

joeybug — Wed, 30 Nov 2016 13:40:09 GMT

Things to do - DECEMBER 2016
-> Write chapters 59; 60; 61; 62 of Lights Out
-> Write chapters 59; 60; 61; 62 of Dying Thoughts - Eighth Ending
-> Finish Lights Out
-> Start Planning Lights On
-> Start editing Dying Thoughts - Fifth Secret
-> Reach out to 25 book bloggers RE: Reviews
-> ~~Record December booktube Video (Topic: Looking Back on 2016)~~
-> ~~Record December Random Booktube videos (1; 2; 3)~~
-> ~~Make 2017 Book Goals~~
-> ~~Do Review of Book Goals 2016~~
-> ~~Write 1; 2; 3; 4 blog posts~~
-> ~~Post 1; 2; 3; 4 blog posts~~
-> ~~Update FB as often as possible~~
-> Post in ASR RE: Reviews
-> Do 1; 2; 3; 4; 5 ASR
-> ~~Do JoWriMoGo December 2k16~~
-> ~~Do Year in Review post on LJ~~
-> Go geocaching at least once
-> ~~Watch 1; 2; 3; 4; 5; 6; 7; 8; 9; 10 TV shows of choice~~
-> ~~Read 1; 2; 3; 4; 5; 6; 7; 8 books & post reviews on GR/Amazon~~
-> ~~Heart Scan Tuesday 13th December @ 14:30~~
-> ~~TERM ENDS Friday 16th December @ 14:00~~
-> ~~Port Flush Tuesday 20th December @ 09:00 on Saturn~~
-> ~~CHRISTMAS Sunday 25th December~~
-> ~~Christmas w/ Libby Thursday 29th December @ 12:00~~
-> ~~Miss Penne at Dentist Thursday 29th December @ 17:00~~
-> ~~Kim's birthday Friday 30th December~~
-> ~~NEW YEARS EVE Saturday 31st December~~

LONG TERM GOALS ONGOING:
-> Design & order Book postcards (WAM; DTSD; LO; DTEE)
-> Design & order bookmarks (WAM; LO)
-> Chase B RE: Cover (WAM; DTSD; LO; DTEE)
-> Arrange Book Signing at Library
-> Work out display for convention (SWAG; Books; Misc)
-> Design & order banner RE: Convention (3ft x 2ft) [BY JULY 2017]
-> Buy stand for banner RE: Convention [BY JULY 2017]
-> Order 20 copies of each book RE: Convention (DTTW [March]; DTFW [April]; DTFS [June]; INAR [August])

BONUS STUFF!
BONUS: -> Write chapters 63; 64; 65 of Dying Thoughts - Eighth Ending
BONUS: -> Finish Dying Thoughts - Eighth Ending
BONUS: -> Start Lights On
BONUS: -> Start Cramping Chronicles: The First Twinge
BONUS: -> Read ~~1; 2; 3~~; 4; 5 books & post reviews on GR/Amazon

Monthly Sticky Post

joeybug — Sun, 31 May 2015 07:06:52 GMT

It seems that a monthly one works well for me right now so a monthly one it is. I may go back to the fortnight, or I may just add extra chapters to bring up my productivity...not sure yet! So here it is, my new list of goals for June!

Things to do - JUNE 2015
-> Write chapters 27; 28 of Walk A Mile
-> Write chapters 27; 28 of Dying Thoughts - Seventh Death
-> Do PF edits for Dying Thoughts - Second Sight
-> Do PF edits for Dying Thoughts - Third Wish
-> Do PF edits for Lynne & Hope
-> ~~Chase B RE: covers~~
-> ~~Chase Page RE: PF edits~~
-> ~~Chase Kim RE: Edits~~
-> ~~Chase Toni RE: PF edits~~
-> Do teasers for Dying Thoughts - Fourth Week 1; 2
-> Organise cover reveal event for Dying Thoughts - Fourth Week for July
-> Write 1; 2; 3; 4 blog posts
-> Post 1; 2; 3; 4 blog posts
-> ~~Update TSU/FB as often as possible~~
-> ~~Contact up to #100 RE: blog reviews~~
-> ~~Chase up blogs who promised reviews~~
-> Post in BD RE: Review Swaps
-> ~~E-mail event ppl RE: #livintheindielife~~
-> Plan #livintheindielife event for August at latest & contact more people
-> Pay Toni for PF edits (~~DTSS~~; DTTW; L&H; TFT)
-> Find 100 geocaches
-> Go geocaching 1; 2; 3; 4 times
-> Release Rosetta the mobility travel bug
-> Watch ~~1; 2; 3~~; 4; 5 TV shows of choice
-> ~~Read 1; 2; 3; 4; 5; 6; 7; 8 books~~
-> ~~Post 1; 2; 3; 4; 5; 6; 7; 8 reviews on GR/Amazon~~
-> ~~Book Port Flush (Phone Weds 3rd June)~~
-> ~~Do vape coil & juice order~~
-> ~~Order Flea stuff (June 6th)~~
-> ~~Order presents for Bro/Mum/Dad~~
-> ~~Phone TM RE: Phone Insurance~~
-> ~~Pay fortnightly for new tablet~~
-> ~~Start wiping old tablet ready to list and sell~~
-> ~~Psych appointment Thursday June 4th @ 10:00~~
-> ~~Port Flush Thursday June 11th @ 09:30 on Saturn~~
-> ~~Daniel's birthday Saturday June 13th~~
-> ~~Mum's birthday Thursday June 18th~~
-> ~~Dad's for Father's Day Saturday June 20th @ 12:00~~
-> ~~Dad's birthday Wednesday June 24th~~

BONUS STUFF!
BONUS: -> Write chapters 29; 30 of Walk A Mile
BONUS: -> Write chapters 29; 30 of Dying Thoughts - Seventh Death
BONUS: -> ~~Read 1; 2; 3; 4; 5 books~~
BONUS: -> ~~Post 1; 2; 3; 4; 5 reviews on GR/Amazon~~

77 things to do before I die - UPDATED

joeybug — Wed, 14 Aug 2013 15:48:36 GMT

1. ~~See Darla (missd007) start school~~ - Completed September 2nd 2009
2. ~~Finish the Dying Thoughts series~~ - Completed December 17th 2016
3. Write twenty books
4. See all twenty books published and on other people's bookshelves.
5. ~~Pass my first year at the OU~~ - Completed August 3rd 2010
6. ~~Do ADIML once a month for a year~~ - Completed November 26th 2010
7. ~~Pass my second year at the OU~~ - Completed November 29th 2011
8. ~~Pass my third year at the OU~~ - Completed December 3rd 2012
9. ~~Date someone for more than 4 weeks~~ - Completed January 22nd 2007
10. ~~Meet Kim~~ - Completed November 9th 2015
11. ~~Pass my fourth year at the OU~~ - Completed November 29th 2013
12. Release and sell copies of "Light's Out"
13. ~~Pass my fifth year at the OU and graduate w/ a degree~~ - Completed September 19th 2014
14. Release and sell copies of "Dying Thoughts - Eighth Ending"
15. ~~Write two books at the same time and finish them~~ - Completed January 2nd 2010
16. ~~Sell some copies of "Dying Thoughts - First Touch"~~ - Completed 21st January 2012
17. ~~Release and sell copies of "The Friendship Triangle"~~ - Completed February 20th 2012
18. ~~Release and sell copies of "Dying Thoughts - Second Sight~~ - Completed February 20th 2012
19. ~~Release and sell copies of "Lynne & Hope"~~ - Completed July 9th 2012
20. ~~Release and sell copies of "Dying Thoughts - Third Wish"~~ - Completed July 11th 2013
21. ~~Finish DTTW before uni~~ - Completed August 14th 2007
22. ~~Get a first on one OU course~~ - Completed August 3rd 2010
23. ~~Pay off my debts~~ - Completed August 10th 2013
24. ~~Lose enough weight to fit back into my cool clothes~~ - Completed September 26th 2006
25. Release and sell copies of "Lights Off"
26. ~~Find 100 geocaches~~ - Completed August 3rd 2015
27. Find 250 geocaches
28. ~~Pass my first year at uni~~ - Completed July 25th 2007
29. Release and sell copies of "Cramping Chronicles: The Second Pang."
30. ~~Go geocaching on holiday~~ - Completed August 3rd 2015
31. To make sure those I leave behind do not hurt too much
32. ~~Finish the letters for those who are left behind~~ - Completed July 3rd 2006
33. Find 500 geocaches
34. Release and sell copies of "Lights On"
35. Hide my own geocache
36. Find 1000 geocaches
37. Go abroad with B and Darla
38. ~~Go on a proper holiday w/ B & Darla~~ - Completed January 6th 2012
39. ~~Release and sell copies of "Waiting On You"~~ - Completed July 26th 2014
40. ~~Sell 10,000 copies of all my books total~~ - Completed March 5th 2012
41. ~~Release and sell copies of "Dying Thoughts - Fourth Week"~~ - Completed August 30th 2015
42. ~~Release and sell copies of "Destination: Unknown"~~ - Completed July 9th 2016
43. Do an interview with a national newspaper about my books
44. ~~Raise awareness of Brittle Asthma and how it affects sufferers~~ - Completed June 25th 2008
45. ~~Let my hair grow back to it's natural colour for at least a year~~ - Completed January 1st 2012
46. ~~Meet John Barrowman~~ - Completed December 4th 2008
47. ~~Release and sell copies of "It's Not Always Rainbows"~~ - Complete June 30th 2017
48. ~~Release and sell copies of "Dying Thoughts - Fifth Secret"~~ - Completed May 15th 2017
49. ~~Get a new car~~ - Completed 5th September 2011
50. ~~Survive 20 years as a type one brittle asthmatic~~ - Completed January 6th 2009
51. Outlive both my parents
52. ~~See Darla into secondary school~~ - Completed September 6th 2016
53. ~~Get up at 8am and work every day for a week~~ - Completed September 9th 2009
54. ~~Give up smoking~~ - Completed February 18th 2014
55. Release and sell copies of "Dying Thoughts - Sixth Change"
56. ~~Sue the NHS and win for the fuck ups~~ - Completed January 15th 2008
57. Release and sell copies of "Walk A Mile"
58. Release and sell copies of "Dying Thoughts - Seventh Death
59. Release a book about the illnesses I live with
60. ~~Finish my office cross-stitch~~ - Completed January 16th 2010
61. Finish the "Lights Out" trilogy
62. ~~Eat three proper meals a day for a week to see if it helps the M.E/FMS~~ - Completed September 26th 2006
63. ~~Write 12 original songs~~ - Completed September 26th 2012
64. ~~Keep my flat clean and tidy for a week~~ - Completed September 26th 2006
65. Release and sell copies of "Cramping Chronicles: The First Twinge"
66. ~~Go six months without a hospital admission~~ - Completed September 14th 2006
67. ~~Finish 10 books consisting of five stand-alones and five of the Dying Thoughts Series~~ - Completed April 20th 2013
68. Be the first to find a geocache
69. ~~See Helen's daughter Evalyn into school~~ - Completed September 1st 2011
70. ~~See Helen's daughter, Ava, into school~~ - Completed September 3rd 2013
71. ~~See Helen's son, Archie, into school~~ - Completed September 2nd 2015
72. Have a book launch party at a posh hotel with all my friends
73. Finish the "Cramping Chronicles" series
74. Do a book tour
75. Do a book signing
76. ~~Walk from my house to town without crutches or a wheelchair (approx. 1 mile)~~ - Completed September 2nd 2011
77. ~~Live to see 30~~ - Completed January 6th 2012

One last call!

joeybug — Sat, 27 Apr 2013 09:34:18 GMT

I've done a whole heap of research and have just finished reading through everything I have and highlighting what I'll need to mention or know. I just have a few questions about the Muslim faith and writing about it. I don't want to be disrespectful, and so I was hoping someone here would know someone or they themselves would be willing to answer a few questions about how I can use the name of The Prophet (peace be upon him) without offending people who practise Islam. That is the last thing I want to do.

So you can comment here, or PM me, or email me @ bugbooks@virginmedia.com Thanks!

(I'll make this public for people to see)

Another plea for help!

joeybug — Thu, 18 Apr 2013 15:54:15 GMT

Thanks to those who have emailed me already, I really appreciate the help.

I’m not going to make a long post. If you want to read the whole story, here it is.

Basically, I’m a writer and would like to hear personal experiences of being a teenager and being LGBT. Preferably for the UK and preferably in most recent years, but at this point I’ll take anything. I’m especially looking for people from a minority ethnic background i.e Black, Middle-Eastern, Eastern European. As well as those who are religious and/or have religious parents for both Catholic and the Muslim faiths.

I promise that everything will stay confidential and nothing will be used without your consent. I want to do the story and characters justice and there is only so much you can learn from Google and Wikipedia.

You can contact me through PM or email me @ bugbooks@vriginmedia.com

I'll leave this entry public for those who want to share with friends, or point them in my direction. Thanks!

More book updates!

joeybug — Tue, 09 Apr 2013 16:57:01 GMT

No, don't worry, I haven't written another four chapters in the few hours since I posted my last update. I'm fast, but not *that* fast! I have, however, been working on the plot line and character notes for books 11 and 12. Up until yesterday I knew what book 12 would be about, I just hadn't gotten round to planning it yet, but I had no idea what to do for book 11.

When we were clearing the boxes in the house and shredding things, I found the first few pages of a book I had started after the first Dying Thoughts and I read it over, laughed at my writing and realised that had I completed the book it would have just been another book about teen pregnancy. I liked the idea of super religious parents having to deal with something outside their comfort zone and then I started to think. I have a number of gay, lesbian, bi and trans* friends. I am bi myself and I realised that there are not that many books on how a teenager can deal with that. Now, I don't know enough to write about a trans* character and not end up offending so many people and I was going to make the main character - as in written from her POV - black, but after some thought and discussion decided to switch it round so that I wrote from the POV of the only white major character. I didn't want to do the same with a black character that I would ultimately do with a trans* character. I am bi and I was a bi teenager, but I was a WHITE bi teenager and I have no idea what black bi/lesbian/gay/queer/trans* teenagers go through and again, I didn't want to offend people.

I have my plot, I have my story line, I have my character cards and I will have to do A LOT of research to do the story justice. I've written a post on my tumblr asking for help from people going through it in 2013, with the promise to keep everything confidential and I wanted to reach out here too.

I will be writing about a white, bi 16 year old girl, a black, lesbian, 16 year old girl, a middle eastern, gay, 16 year old boy and a eastern European, 16 year old boy. All the families come from a different culture. I will mostly be including Christianity, but will need to do some research on Islam. All the families have different views on homosexuality and will be reacting differently. The Islamic family are more traditional about the culture, but not actively practising the religion. I plan to google a lot of things, but I would like to know more about the cultures I will be writing about, here's some more information if you're interested.

The black girl has parents who were born in the UK, but whose parents emigrated from Western Africa in the 1950s. They follow Christianity strictly but would have their own culture that I would like to know more about. I would like to know what sort of difficulties she would face not only as a black person, but as a lesbian in a strictly Christian household, with the cultural background she has.

The middle eastern guy has parents who emigrated from Iraq when they were younger, so about the time of the first Gulf War. They are very traditional and follow more of the cultural rules of Islam than the religion. I would like to know about what sort of difficulties he would face as a young gay teenager living with strict parents from an Islamic background. I would also like to know any major cultural differences that would be present in his life.

The eastern European guy has strict Catholic parents who emigrated from Croatia before he was born. He is gay, and has an on/off relationship with a younger boy at the same school. He has not told his parents he is gay because he wants them to still be proud of him. I would like to know what difficulties he would face as a young gay man from a Catholic background. Some of that I already know, but like I said, it's been a long time since I was a teenager and I am also white.

I would also be interested to hear what kind of lifestyle gay teenagers have in the UK. What resources are available to them? Is there much support? Do they have a place to go to just hang out? Or is it all just for the older gay crowd? Anything you can tell me would be great and as I said on Tumblr, would be kept between you and me. If you don't feel okay posting as a comment, feel free to email me at joeybug44@virginmedia.com or PM me here at LJ. And please feel free to share the relevant parts of this post with anyone you think may be able to help me.

Thanks

So thanks to anyone who read all of that and is able to help, or knows someone who might be able to. The last thing I want to do is write it badly and offend a bunch of people. I want it to be as real as it can be, being that's it's fiction and I have some artistic license. So thanks :D If you want to direct people here, I'll make this entry public and can activate anonymous commenting if you all think that would help get a better response.

Thanks for reading.

Friends clear up!

joeybug — Fri, 05 Apr 2013 18:25:19 GMT

Just did a delete of old journals and people who I never see post. However, if you felt that I removed you accidentally, please comment here and I'll re-add you. Some of the names I didn't recognise, but it could be just my memory is crap or I haven't had you on my list long enough to remember who you are. Sorry if I made an error!

Calling all Fibromites!!

joeybug — Sun, 14 Oct 2012 11:09:24 GMT

Do you want to help spread awareness of this dreadful condition? Do you, or someone you know have Fibromyalgia? The Fibroduck Foundation is a UK based charity with the aim of raising awareness and funds to pay for research into Fibromyalgia. If you are interested in helping to spread the word, you can read on.

My name is Joey, and I have Fibromyalgia. I have recently started to volunteer for The Fibroduck Foundation. The idea started with the plan to send one million ducks worldwide to raise awareness of Fibromyalgia. They were the plain yellow ducks that had spots to highlight the tender points people with Fibro have. In 2011, The Fibroduck Foundation was launched and the plan to raise enough to fund a research program into Fibro was started. They need £26,000 and have raised over £1,000 so far. My band - The Rocking Dodars - released a single on May 12th 2012 with 100% of the proceeds going to The Fibroduck Foundation. However, I want to do more to help raise awareness. This is where you all come in.

Would you like to appear on their website? To be interviewed about what it’s like to have Fibro and how it impacts your life? You don’t have to use your name, you can use just an initial or even an alias - no one will know how to contact you but me, and I will not share that information with anyone without your prior consent. If you’re interested in being interviewed, please email me at joeypaul@fibroduckfoundation.com

Do you find that people see you as a disease? As a person with Fibro? Do you wish they would also see who else you were? If you’d like to take part in another way to raise awareness, please read on. I will be starting to do graphics with the term "I have Fibro, but it’s not who I am” to feature on the Fibroduck Foundation website. If you want to use your name, you are welcome to, again you can use an alias or just an initial. You can chose to include a photo of yourself (please resize to 150 x 150 pixels) but it is not required. You will need to supply me with SIX ways in which you identify yourself. In my case, it would be as a writer, a student, a musician, a friend, disabled and an aunt. You can choose whichever ones you want and again, any identifying information will be kept confidential unless you say otherwise. If you wish to take part in this please email me your list at joeypaul@fibroduckfoundation.com

Although The Fibroduck Foundation is based in the UK, please do not think you need to be based here too. In the time of the internet and raising awareness, nationality does not matter. We’re looking to raise awareness all over the world. Please feel free to share this with anyone you feel would be interested. And if you have any questions, you can email me at the above address.

Thanks for your time

Joey

My May 12th Entry

joeybug — Sun, 13 May 2012 10:06:50 GMT

[It's a day late because I'd forgotten I'd done it until now]

I have been trying to think of what I could say that would be different from the last eight years. Every year on May 12th, I write a post, usually containing "The Spoon Theory" and ask you to read that. This year, I am dictating my entry because the pain is bad and I don't know if this flare-up will clear in time to allow me to type it.

So, what am I going to say this year? Well, I could tell you about the level of pain I'm in, but if you read my journal and know me, you know that already. I could tell you about the crushing fatigue, the cramps that twist my legs and hands into unnatural positions and don't let up no matter what you do. I could tell you about the pain killers I have to take every day, but again, most of you already know that. I've made you all as aware as you're going to be to what it's like to live with M.E and Fibromyalgia.

Some of you are all too familiar with that, some of you have the same conditions, others have some different ones as well and all I can really say is, hey world...it HURTS to be us!

This year though, I wrote a song, I'd decided to give it a go and my muse was nice to me and gave me the words and tune and everything. I played it for my friend, Kim because I wasn't happy with the chords I'd chosen but couldn't work out better ones and she transformed it into a beautfiul, poignet song, with help from her husband, Anders. This year, I released that song and have donated 100% of the profits to The Fibroduck Foundation to aid them in their research. Why? I'm tired of hurting, I'm tired of being sick and I want a cure and if they can't give me that, I want to know *why* I hurt and give me a useful treatment. I mean, sure I've seen the YouTube videos of people claiming they were cured and part of me wants to think that people aren't that evil, to pretend they had a disease, found a cure and then wave it in front of the sufferers and say they too can be cured for $199.95 in five easy installments. I *want* to believe that doesn't happen, but the sad part is, it does.

That's why we need research. REAL research into the cause, the treatments and the cure, it may take five years, it may take ten, hell it could take twenty, just tell me that SOMETHING is being done and with The Fibroduck Foundation, I know it is.

So, yeah, read The Spoon Theory>. Educate yourself about what it's like to be us, not just Fibro and M.E sufferers, but people with ANY chronic pain condition. Also, if you feel so inclined, buy the single "It Hurts To Be Me" from iTunes or Amazon. Help a spoonie, help a fibromite, help someone who's hurting so bad it's enough to make you wince in sympathy.

I never dreamt I would release a song one day, nor did I dream I'd release books and have them sell. Both of these dreams are realities. One dream of mine is to live to see a cure, maybe you can help that one come true too.

Thanks for reading.

It Hurts To Be Me

joeybug — Sat, 12 May 2012 09:04:20 GMT

My name is Joey,

I am thirty and have had Fibromyalgia and M.E since I was nineteen. I have a bunch of other conditions, but they are not relevant here. If you want to know what Fibro is, here's an explanation - life is like a game of kerplunk - Basically, I'm in a lot of pain, every day. My pain scale runs from one to ten, every day it sits at least at a five, that's even with painkillers. My five is about your seven or eight. I'm not alone, Fibromyalgia affects millions of people world wide and we're all desperate for same things...the cure, a treatment that works, people not to say we're faking it, people to be aware of what it's like for us....Our lives back.

Every year on May 12th, which is M.E and Fibromyalgia Awareness Day I make a post in my blog and try to raise awareness in the small circle of friends who read it. I think my friends are as informed as they are ever going to get so now, this year, I decided to do something different. I started playing the ukulele back in August 2010 and have since written nine songs, the latest being the single “It hurts to be me.”

I played the song for my friend Kim, I wasn't happy with the chords I'd chosen, but she already had a tune in her head and it all fit together beautifully, and then the possibility was it could raise some money for The Fibroduck Foundation. So despite the fact that it scares me silly, that people may hate it and all of that. I decided to release it and from there, any profits made could go to the foundation.

The Fibroduck Foundation started as someone wanting to raise awareness by sending 1 million rubber ducks out into the world to show people that Fibromyalgia exists and something needs to be done. Everyone could order a duck, and you could take photos and post them on it's website On it's second birthday back in September 2011, they launched the Foundation, which is committed to providing funds to aid research, to help to find tests to prove it exists, treatments to aid the sufferers and maybe a cure.

I wanted to something more than just write a post, I wanted to say what a lot of fibromites are thinking that, it hurts to be us and so, while sleep was evading me one day, I wrote the song and Kim and her husband added Ukulele, guitar, bass, synth and she produced the whole thing and made it into the beauty it is today. Every penny of profit will go to the Fibroduck Foundation. It will be on iTunes and Amazon as well as other places around the web and hopefully, it will sell enough copies that it will not only raise awareness of what it's like to be a Fibro sufferer, but it will also raise funds for their first research project.

I didn't want to just write a post and hope it made people aware, I didn't want to make money off my pain, I want to make a difference. I can only hope it will.

Please buy the single from Amazon, or iTunes or even from The Fibroduck Foundation website.

Thank you.

SIGNAL BOOST PLEASE!

joeybug — Fri, 23 Sep 2011 22:36:40 GMT

Olive Tree Cafe NEEDS YOUR VOTES!"

The above link will take you to information about the project, but since I have friends who use the service that helps runs the Olive Tree Cafe - Twigs, it's basically a charity that helps people with mental health difficulties return to a working environment. VERY worthy cause and it needs your votes to get the funding for the Cafe to continue to run. Voting starts Monday 26th September and from what I'm told, you can vote more than once.

Please feel free to send around to anyone who you want to! I'm making this entry public for that reason!

Fibromyalgia Awareness post

joeybug — Sun, 31 Jul 2011 16:50:53 GMT

Dear Friends,

I have decided to make this post public, as it contains videos such as my Fibromyalgia Story, as well as three I've done in the midst of the flare I am in right now. I wanted to share them all in one place so I apologise for the repeat postings, but in future I'll probably just add to this post so it's all in one place.

Firstly, some links for those looking for support from other Fibromites and Chronic Pain sufferers.

On LJ:

fibromyalgia - A community for people diagnosed or w/ a tentaive diagnosis or who think they may have FMS (Fibromyalgia Syndrome). They're also very good w/ people w/ other things such as M.E/Chronic Fatigue Syndrome as well as the FMS. Very friendly, helpful and supportive community
chronic_pain - A community for people who have ANY kind of chronic pain condition. Very friendly, helpful community, as well as very supportive.

There are others, but those are the active ones I use, or at least lurk in.

Websites:

- The Spoon Theory by Christine Miserandino

But You Don't Look Sick - The website behind the spoon theory and aimed at anyone with chronic fatigue condition or chronic pain or both.

FibroDuck - With the aim of putting 1 Million "Fibro Ducks" worldwide and having fun doing so, as well as raising awareness.

FibroDuck Foundation - A new foundation from the Fibro Duck people who are raising money for research into Fibromyalgia in the UK.

The Rambling Duck Raising awareness & money for Fibro research doing walks dressed up as "Fibro Duck"

Fibromyalgia Support - A website with a whole heap of info on Fibro and getting support.

Fibro Talk - An online support network for people w/ Fibro

Facebook Groups:

Fibro Duck - Basically, a FB version of the website that offers support and to share the photos and such

Fibro Writers - A FB group that has a lot of Fibro bloggers, which leads to reading other people's experiences.

Fibro Pals - A FB group for mutual support from other "Fibromites"

Videos:
These are my own videos, my own personal story with FMS and some other videos I have made recently, they in fact prompted this post. Some of the videos are long so feel free to pause and come back if need be, or not watch then all the way through, whatever works for you.

Part One of my Fibromyalgia Story

Part Two of my Fibromyalgia Story

Fibromyalgia - We are in pain & we need support

Fibromyalgia - We are NOT drug seekers

Fibromyalgia - DON'T suffer alone

Fibromyalgia - Leg Pain & Understanding

Fibromyalgia - We All Deserve HOPE

I will add info to this post as I continue to find it and/or do anymore videos. If you have any questions, leave a comment to this post or PM me and I'll try to answer it. If that's not something you can do (i.e don't have an LJ) feel free to email me @ joeybug44@gmail.com

If you're looking for FMS suffers on the following, here are my handles:

MsJoeyBug - YouTube
MsJoeyBug - Twitter
Joeybug - Facebook
Joey Paul - G+

And please remember, YOU ARE NOT ALONE! There are people willing to support you through this in the long term.

If you have any videos, links, websites, facebook/G+ groups or Blogs you'd like me to add to this, please comment with the link and a brief description of what they do.

Thanks

Joey

Those interested in my Fibro story

joeybug — Wed, 23 Mar 2011 10:21:11 GMT

Hi, I'm gonna make this entry public for people wanting to see my Fibro story without having to add me.

I'm Joey, I'm 29 and have had FMS (or at least was diagnosed) 10 years. I also have had M.E/CFS 10 years too. The following Videos are my stories

Part One

Part Two

Friends Cut

joeybug — Fri, 12 Nov 2010 12:05:57 GMT

Just did a massive clear out of old journals, people who don't post, people who have never commented and other stuff, if I've removed you and you think it's a mistake comment here and let me know. Also, if I've removed you and you never update you have two weeks to remove me or I'll ban ya since I like to keep my numbers even!

My updated 77 things I want to do before I die...

joeybug — Fri, 08 Jan 2010 11:11:15 GMT

I just went through and took off all that is impossible for me, and added some things that I could possibly do...so here it is :D

1. ~~See Darla (missd007) start school~~ - Completed September 2nd 2009
2. Finish the Dying Thoughts series
3. Complete my contract and write all ten books
4. See all ten books published and on other people's bookshelves.
5. ~~Pass my first year at the OU~~ - Completed August 3rd 2010
6. Meet David Tennant
7. Pass my second year at the OU
8. Pass my third year at the OU
9. ~~Date someone for more than 4 weeks~~ - Completed January 22nd 2007
10. Go back to the US and do a road trip
11. Pass my fourth year at the OU and graduate with a degree
12. Meet Debbie
13. Meet rickybuchanan
14. Meet Cindy
15. ~~Write two books at the same time and finish them~~ - Completed January 2nd 2010
16. Throw a book launch party for DTFT
17. Throw a book launch party for TFT
18. Throw a book launch party for DTSS
19. Throw a book launch party for Lynne & Hope
20. Throw a book launch party for DTTW
21. ~~Finish DTTW before uni~~ - Completed August 14th 2007
22. Get a first on one OU course
23. Pay off my debts
24. ~~Lose enough weight to fit back into my cool clothes~~ - Completed September 26th 2006
25. Live to find a cure for BA
26. To beat the M.E
27. To beat the Fibromyalgia
28. ~~Pass my first year at uni~~ - Completed July 25th 2007
29. Go a week without tea
30. Get married to someone I love
31. To make sure those I leave behind do not hurt too much
32. ~~Finish the letters for those who are left behind~~ - Completed July 3rd 2006
33. Fly with my dad solo
34. See a bit more of the world
35. Go on a helicopter ride
36. Fly a helicopter
37. Start a charity for Brittle Asthma sufferers and research
38. Raise £1,000,000 for that charity
39. Start working again
40. Sell 10,000 copies of all my books total
41. Live to see Blackout on the big screen
42. Convince Hollywood to make the Dying Thoughts series into movies
43. Do an interview with a national newspaper about my books
44. ~~Raise awareness of Brittle Asthma and how it affects sufferers~~ - Completed June 25th 2008
45. Let my hair grow back to it's natural colour for at least a year
46. Meet John Barrowman
47. Be on a TV chat show about either my books or BA
48. Meet NCIS Cast
49. Meet Hugh Laurie
50. ~~Survive 20 years as a type one brittle asthmatic~~ - Completed January 6th 2009
51. Outlive both my parents
52. See Darla into secondary school
53. ~~Get up at 8am and work every day for a week~~ - Completed September 9th 2009
54. ~~Give up smoking~~ - Completed October 27th 2010
55. See my brother happy
56. ~~Sue the NHS and win for the fuck ups~~ - Completed January 15th 2008
57. Give up caffeine for a week to see if it does help the sleep
58. Own 100 stuffed monkeys
59. Get my second syringe driver case signed by celebrities
60. ~~Finish my office cross-stitch~~ - Completed January 16th 2010
61. Finish one scrapbook
62. ~~Eat three proper meals a day for a week to see if it helps the M.E/FMS~~ - Completed September 26th 2006
63. Apply for a well paid job and get at least an interview
64. ~~Keep my flat clean and tidy for a week~~ - Completed September 26th 2006
65. Have £5000 in savings
66. ~~Go six months without a hospital admission~~ - Completed September 14th 2006
67. Finish my other patchwork quilt
68. Get through Uni without too much debt
69. See Helen's daughter Evalyn into school
70. Drive from Land's End to John O'Groats in one day
71. Drive to see Angie again without B's help
72. Have a book launch party at a posh hotel with all my friends
73. Live one day pain free without being stoned
74. Do a book tour
75. Do a book signing
76. Walk from my house to town without crutches or a wheelchair (approx. 1 mile)
77. Live to see 30

M.E/Fibromyalgia Awareness Day

joeybug — Tue, 12 May 2009 08:41:52 GMT

May 12th is M.E. awareness day...it's a condition, I and many many others suffer from...

Please show support by putting a blue ribbon in your userinfo:

Feel free to link from my photobucket..

*EDIT* Please comment if you put it in your userinfo...I want to get as many people with it as possible...

Feel free to link to this entry in your own LJ's.

A M.E. Fairytale
A Bedtime Story

There was once a young girl called Tamsin. She didn't have a wicked witch of a stepmother, she didn't have two ugly trogs for sisters, she didn't have seven vertically challenged men for friends and she didn't even marry a handsome prince (though her boyfriend was as prince-like as they come!) She was 18 years old...

... so what should she of been doing? Clubbing? Working? Shopping? Pubbing? Attending college? Partying? Going to church? Gossiping? Having the time of her life? Even living a life?

But what did she do? Sleep, sit, lie, listen and watch.... She couldn't work or do the clubs - if not extra especially careful with alcohol and certain foods; she would land herself back in the paramedics care. And though she could occasionally go shopping, she needed someone to take her and push her wheelchair, someone who could take her home at a moments notice. At a time when independence ought to be growing steadily, her reliance on other people was stifling and she couldn't help feeling a burden. She spent most of her time sitting by the window wishing to be able to be outside in the world but knowing that even if she was well enough to go outside for 10 minutes that she couldn't even do it alone.

But Why? This girl has M.E. (myalgic encephalopathy). It is collectively known as C.F.S.(chronic fatigue syndrome) or P.V.F.S. (post viral fatigue syndrome).

All right so what does that mean? Most people think it is just about being tired. Others think it is all in the mind.

Its not....

So what is it? No one actually knows for sure and even the fairy godmother cannot wave her magic wand to make people better. With over 150,000 affected in the United Kingdom alone, it is definitely not just make believe. Reduced blood flow to the brain causes a whole array of unpleasant symptoms But even those with a great imagination can not imagine how it feels. She often looks perfectly fine and they assume she is feeling great but the truth be told she feels terrible, she can not even remember how it feels to be well. So she smiles through the pain - she doesn't like a fuss.

So what does she feel? Everyday she wakes with a "hangover" or "fluey feeling". She experiences dizziness, headaches, chest pains, palpitations, tachicardia (rapid heart beat) abdominal pains, severe muscular pain and weakness, excruciating limbs, swollen glands, sensitivity to light - she often wears sun glasses in the house, even at night! She is sensitive to sound - the slightest sound can echo painfully a thousand times......She experiences temperature disturbances and shivers and shakes when wrapped up warm and sometimes has to wear a hat and gloves in bed! Other times however, she feels like she will explode with hear even when wearing next-to-nothing! Then there is an exhaustion, far beyond anything ever experienced by any healthy individual, a dreadful malaise and fatigue following the slightest mental or physical exertion. She suffers panic attacks and hyperventilation, severe shaking episodes, extreme weakness in hands, arms and legs - she frequently can not hold a pen, type, brush her hair, dress / undress herself or even clean her own teeth. She suffers ear and eye ache, terrible nausea, loss of appetite, weight change, insomnia, cognitive difficulties - she finds it hard to concentrate and often can't understand what is being said to her, sometimes she must read the simplest sentence over and over until it makes any sense at all. She cannot walk far without walking sticks and often collapses when her legs buckle beneath her. The only way for her to climb the stairs is to crawl - not at all degrading when one is eighteen! Sometimes she is unable to feel parts of her own body. And that's only the half of it ..................

If there is no cure, what does she want? She wants to raise awareness and understanding for the story of her's and many other people's lives. It is not make believe for, unlike sleeping beauty, a simple kiss will not revive the unfortunate victims. If that was the case, her handsome prince would have cured her long ago but even he cannot help. Like the others, all he can do is watch and feel helpless.

All she wants is for people to understand how she feels - she is NOT JUST TIRED! But she smiles to make the passers by feel better for she knows that one day she will reach the top of the beanstalk and she will be a stronger and better person for it...

This is not just a fairy tale...

It's more than tired when you have got M.E.

The Spoon Theory
My best friend and I were in the diner talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me this time, with a kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have M.E. and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about M.E.. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of M.E.. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have M.E.”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices, or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of choice, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case M.E., being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has M.E..

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding M.E., but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

© 2003 by Christine Miserandino Butyoudontlooksick.com

To add the ribbon to your userinfo use this:

A Public Blog about "Living With BA"

joeybug — Wed, 25 Jun 2008 14:53:52 GMT

http://livingwithba.blogspot.com/

It should appear on George's website so people will be able to get support from reading about my experiences.

Friends Cut

joeybug — Mon, 07 Apr 2008 17:46:06 GMT

Can the following people please remove me from their flist:

_yoplait
crazy__me
~~lin71~~
muppixie
~~smallandpretty~~
sourcereader
vonwolf

Thanks

You want PROOF?!?!

joeybug — Fri, 21 Mar 2008 14:00:52 GMT

Is that proof enough? Or do you need more?

ETA: This just in....

You call that proof? Anyone could have taken that photo and you could have poorly photoshopped yourself onto it. That's not proof, just admit the truth now.

The "Joey Paul " FAQ

joeybug — Tue, 15 May 2007 21:23:18 GMT

[idea stolen from lapifors]

Who is Joey?
Joey is a 35 year old who writes books for a living.
Information about her health issues can be found here.

What kind of books does she write?
She writes young adult fiction, mostly crime stuff. You can find out more about her books on her official website. You can "Like" her on Facebook too! So far the books are called Blackout, The Friendship Triangle, Lynne & Hope, Waiting On You, Destination: Unknown, It's Not Always Rainbows, Walk A Mile, Dying Thoughts - First Touch, Dying Thoughts - Second Sight, Dying Thoughts - Third Wish, Dying Thoughts - Fourth Week, Dying Thoughts - Fifth Secret, Dying Thoughts - Sixth Change, Dying Thoughts - Seventh Death, Dying Thoughts - Eighth Ending, Lights Out, Lights On, Lights Off, Cramping Chronicles: The First Twinge, Cramping Chronicles: The Second Pang, Cramping Chronicles: The Third Ache & Invisible

Where can I find her books?
Information about release dates and where to find her books can be found on her website
The following books are available on Amazon and other sites as e-books: Blackout, The Friendship Triangle, Dying Thoughts - First Touch, Dying Thoughts - Second Sight, Dying Thoughts - Third Wish, Lynne & Hope, Waiting On You, Dying Thoughts - Fourth Week, Destination: Unknown, Dying Thoughts - Fifth Secret & It's Not Always Rainbows. Dying Thoughts - Sixth Change & Walk A Mile will be released in 2018.

I read the first entry, but have forgotten what conditions she has...
Type One Brittle Asthma (BA), Myalgic Encephalopathy (M.E), Fibromyalgia (FMS), Vocal Cord Dysfunction (VCD), Severe Obstructive Sleep Apnea (OSA) & Vestibular Dysfunction

Why does she make people read the first entry before she lets them go on her friends list?
In the past people have been shocked and not wanted to get involved once they knew what was wrong with her, so now she makes sure people are informed BEFORE they click the button to add her as a friend.

Who's B and Darla?
B = best friend, carer, slave, house keeper or whatever hat she choses to wear today, but don't worry folks she gets paid for the work she does to help Joey out around the house and out and about.
Darla = B's daughter and Joey's God daughter. She's thirteen and growing up fast!

Does she have any pets?
She has two cats, Miss Penne who is eight and Miss Spaghetti (Hetti) who is four. They are her children, mock them and die in a fire that she set. They have two house-mates Miss Violet and Mr Dash, both of whom are three and belong to Joey's carer and house-mate B. They have their own journal at the_pasta_cats

Does she have any hobbies?
Joey likes to write, both books for her contract and also for fun. She also likes to strum away on the Ukulele. She also likes to go out and about and find geocaches. She reads a lot and can be found in her spare time on the internet or doing one of the other things mentioned.

What is geocaching?
Geocaching is basically using GPS satellites to find treasure, or caches as they're called. You can find out more about it here. Joey start in October 2014 and hasn't stopped since!

What shows does she watch?
NCIS, NCIS:LA, Castle, Grey's Anatomy, White Collar, Fringe, Bones, Warehouse 13, Doctor Who, Supernatural and Torchwood

What/Who is/are The Rocking Dodars?
Joey writes songs and released a single in May 2012 called "It Hurts To Be Me", with 100% of the proceeds going to The Fibroduck Foundation, which are a UK charity raising awareness and funds for research into Fibromyalgia. You can buy the song on Amazon & iTunes, as well as the Fibroduck Foundation website. She had a lot of help in making the song a single from her friends Kim and Anders. They decided to try and record an album and formed the band - The Rocking Dodars. You can find their website here. At the moment, they have one song completed and plan to redo "It Hurts To Be Me" as they know more and have better equipment. Joey provides vocals and Ukulele.

Does Joey do anything like a job or something?
Technically, Joey is "medically retired" and has been since she was 19 and fell ill with M.E (and possibly FMS too). However, she writes her books, she did her honours degree and may do a Masters, she does the music with her band and she also volunteers for The Fibroduck Foundation as a "writer ducky". She fully supports The Fibroduck Foundation and aims to help them reach their first research goal of £26,000 - just £24,000 to go!

Where else can I find Joey online?
Let's see:-
Joey on Facebook
Joey on Twitter
Joey on Tumblr
Joey on Youtube

That's all I can think of for now, folks...it's meant as a way of breaking the ice for the new people on my flist, if you want to ask a question, comment and I'll add it and answer it as best as I can.

It's that time of year again...

joeybug — Fri, 05 May 2006 20:07:45 GMT

Sometimes, Living is all you have left to do

joeybug — Mon, 27 Mar 2006 19:04:32 GMT

I made this topic so that we can continue our dicussion, Em without taking over Ricky's LJ...

Everyone else...please ignore.

Wanna help?

joeybug — Thu, 16 Mar 2006 23:51:38 GMT

Okay, so hekatelesedi asked how she could help...not much she can, or anyone of you can do, except maybe donate a couple of lungs and a heart, but here's what you can do.

I didn't know about this but when my book was in the process of being published, emmersonne got a few of my friends to create a congratulations scrapbook - her computer crashed and ate a lot of them but recently she was able to retrieve some of them..one of them was a definition of me by rickybuchanan...saturrrday made me a new House background and I plan to stick with it because it's just *me*, but because I couldn't think of anything to put in the big bar, she left it with "You Text Here" so today I dug out the definition from Ricky and put it in the bar, it made me smile, made me feel loved, made me remember why I fight the way I do so I asked, sushigal007 for one and added that and then hekatelesedi gave me one too...

So, if you wanna help...do a definition of me to be added to that bar, it won't cost you a thing and it'll make me remember on those dark nights when AIM, MSN, Google and skype are deserted that no matter how bad I feel, you do all care and I know that if you could, you would give me the lungs and heart and everything to stop this happening to me...but you can't do that, so do this...

Thanks

joeybug — Sat, 13 Aug 2005 19:28:43 GMT

Homophobia and You:

I am girl kicked out of her home because I confided in my mother that I am a lesbian.

I am the prostitute working the streets because nobody will hire a transsexual woman.

I am the sister who holds her gay brother tight through the painful, tear-filled nights.

We are the parents who buried our daughter long before her time.

I am the man who died alone in the hospital because they would not let my partner of twenty-seven years into the room.

I am the foster child who wakes up with nightmares of being taken away from the two fathers who are the only loving family I have ever had. I wish they could adopt me.

I am one of the lucky ones, I guess. I survived the attack that left me in a coma for three weeks, and in another year I will probably be able to walk again.

I am not one of the lucky ones. I killed myself just weeks before graduating high school. It was simply too much to bear.

We are the couple who had the realtor hang up on us when she found out we wanted to rent a one-bedroom for two men.

I am the person who never knows which bathroom I should use if I want to avoid getting the management called on me.

I am the mother who is not allowed to even visit the children I bore, nursed, and raised. The court says I am an unfit mother because I now live with another woman.

I am the domestic-violence survivor who found the support system grow suddenly cold and distant when they found out my abusive partner is also a woman.

I am the domestic-violence survivor who has no support system to turn to because I am male.

I am the father who has never hugged his son because I grew up afraid to show affection to other men.

I am the home-economics teacher who always wanted to teach gym until someone told me that only lesbians do that.

I am the woman who died when the EMTs stopped treating me as soon as they realized I was transsexual.

I am the person who feels guilty because I think I could be a much better person if I didn’t have to always deal with society hating me.

I am the man who stopped attending church, not because I don't believe, but because they closed their doors to my kind.

I am the person who has to hide what this world needs most, love.

I am the person who is afraid of telling his loving Christian parents he loves another male.

Repost this if you believe homophobia is wrong

An Open Letter...

joeybug — Mon, 08 Aug 2005 23:30:29 GMT

The following is an open letter to everyone who deems it their responsibilty to judge me, my friends and anything we choose to do. It is uncensored, unfilitered and if you take offense by it then I suggest you take a good long look at yourself and ask why.

TO: Everyone who deems it their business as to what I do in my life.
FROM: Joey

You want to make a snap judgement on me, fine, do it. Judge me based on the lies you have heard, the lies you have made up and the fantasy world that you live in, in which you are the poor innocent victim, who does no wrong and is all knowing and powerful. I have thick skin, nothing you do or say could actually bother me anymore because I really couldn't give a fuck what you think of me, what I do with my days or anything else to do with my lifestyle. Why am I bothering to write this then? Well, because I do have a problem when you start to judge my friends and people I care about based on your own selfish beliefs, where you have never actually made a mistake or done anything wrong...ever.

I know that you'll want to pick holes in everthing I say so I'm going to make it nice and easy for you and put it in bullet points. That way you and I both know that when you start filing your "arguments" you'll have covered everything.

B and Darla - I'd just like to know exactly who appointed you the ruler in anything to do with motherhood? Did I blink and miss something or have you actually *had* a child in the past nine months? How DARE you spout such crap as you are "concerned about the childs welfare". You don't even *know* Darla...you haven't seen her in seven fucking months and trust me, she's grown up a lot. She's also an extremly happy and well adjusted child. A laugh and a smile for everyone. How DARE you bring up something that happened back in fucking November and say that it was a situation that Darla should not have been exposed to? I'm sorry, did I miss something? Was it actual you who spent eight hours in labour to have Darla? No, I didn't think so.
I have spent pretty much every day with Darla and B since she was born. B has been a great mother to that child and before you bring up some other crap sarky comment, think about this...if B is such a crap mother who obviously has no concern for her child's welfare, why hasn't her health visitor picked up on it? Why is Darla a happy, well developed nine month old baby? Why is Darla learning to talk if B has had no regard for being a responsible adult.
I'd love to see how you'd cope with being given a baby and told that for the next eighteen years you have to do everything for that child. You have to feed it, change it, bathe it, help it grow into a well-rounded adult...you may choose to do things differently than B, but at the end of the day, it's fuck all to do with you, isn't it? You don't have a child, and it's easy to point out other people's mistakes when you don't have to run the risk of actually doing it yourself.
I'm glad that you've both been able to fill your empty hours with alcohol, fags in the back garden and slagging off everyone who you class to be a friend...I'm really glad that B and Darla (and myself, for I know I am not exempt) have given you something to do with your petty meaningless exsistances.

My health - Now, I know that this one is a favourite for the pair of you, like to claim I'm "manipulating" people, "emotionally blackmailing" them...and of course, let's not forget that you get this from reliable sources, people who know me so very well. People who have spent the past four years with me, gone to hospital visits, been with me during hospital admissions. All of that, they're the invisible people that follow me everywhere perhaps? Or maybe they're psychic and can tell you exactly what happens during my hospital appointments/stays/GP appointments? Do they tell you that actually Andrew and I spend the whole time laughing and joking that we've managed to fool the lot of you...because you know, he has time to do that when there's all those "real" paitents out there to treat.
I've heard it all, I really have - I've heard the story that actually this is all a big lie and I don't really have a syringe driver, nebuliser, wheelchair or anything else - or I do, but I don't actually need them to live - I went out and brought them at a car boot sale perhaps? Or maybe I stole them from the local hospital? I dunno, this is your fantasy, you tell me...
I've also heard the story that there is never any bad news, that I just wait until someone I know is having a good day and the attention is turned away from them before I announce that actually, there is something majorly wrong meaning that I must be the center of attention...I like this one the best because it shows how you've used your own lives for research.
I've heard the stories that actually I'm just lazy, there is no such thing as M.E/FMS/BA, I made them all up and even if they do exsist I don't have them...yep, heard them all...and no, nothing you could say now could actually bother me anymore because I have a life...maybe it's time you went and got one yourselves.

Your so-called friends - Do you think it's big to slag people off behind filters? To kiss ass one minute and then the next whisper behind their back? I'll keep this one short, because unlike you I know what the words "in confidence" actually mean...but one day, you're going to wake up and discover that you're all alone apart from each other and shock horror, what will you do then? Who will you bitch about? Maybe, maybe then you'll have to start looking at yourselves more closly in the mirror in the morning and realise that the reason no one else is left is because they had to see what you'd been running away from every day - who you really are

I think that's about everything - Oh, I'm sure that this entry will be filled with your friends jumping in to support you and to tell me that I'm uncalled for and everything, but to be honest I couldn't give a fuck, I really couldn't. You can call me every name under the sun, you can sit and protest to what I've said until you're blue in the face but it won't bother me and you know why?

Because, in six months time, I'm still going to be surronded by people who actually give a shit about me...and anything you, or anyone else defending you says to me means nothing....but not being one to hide behind a filter when I have something to say about someone, I'll leave this public and comments enabled...for you see, unlike you both....

....I am not a coward

Though, this will be the last entry I will make about this subject, because I have nothing more to say to either one of you and as far as I'm concerned, this is me drawing a line under everything to do with either of you.