Fibromyalgia

You have seen *my* post of the 30 Things You May Not Know about my invisible illness(es)..  here are others, and I made sure to the best of my abilities that there are no duplicate blog entries..  duplicate names mean different people.. Note that this is by no means a complete list.. please feel free to sign in & add more!

Invisible Illness Week Seminars on iTunes

Visit ITunes and download the Invisible Illness Week seminars for free on your ipod.

Now you can listen to them on your MP3 player, ipod, etc. Great while going for a walk or when you are stuck in bed.

How cool is that??

Source: invisibleillnessweek.com

Posted via email from Kelli’s Posterous

Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a “meme,” 30 Things About My Invisible Illness You May Not Know. So, here it goes:

30 Things About My Invisible Illness You May Not Know (modified)

1. The illnesses (the big 3 at least) I live with are: Endometriosis, Fibromyalgia, Chronic Fatigue Syndrome
2. I was diagnosed with it in the year: Endo 1999, Fibro 2006, CFS 2008
3. But I had symptoms since: Endo – Highschool (late 80’s), Fibro – potentially all my life, but significantly since my riding accident in 2003, CFS – again, potentially all my life, cuz I’ve always been tired
4. The biggest adjustment I’ve had to make is: Learning limitations
5. Most people assume: That cuz I am dressed, and moving that I am having a good day & expect me to go do ’stuff’, whatever ’stuff’ may be
6. The hardest part about mornings are: going to bed. Seriously! my sleep hours are midnight to noon.
6a. The hardest part about getting up after sleep: is the cramped & stiff muscles from not moving..
7. My favorite medical TV shows are: Grey’s Anatomy, House, & I loved ER from Day 1.
8. A gadget I couldn’t live without is: My PC.. it keeps me in touch with people, and lets me research and express myself.. (not quite what I think the question was asking for but there it is)
9. The hardest part about nights are: slowing down, physically, emotionally, mentally.. night time is my best time, typically my most functional time
10. Each day I take too many pills & vitamins. 2 in the wee hours, 5 at noon, up to 20 at midnight. and others as needed
11. Regarding alternative treatments I: am on the fence.. I can’t be bothered with acupuncture, but Osteopathy works awesome!
12. If I had to choose between an invisible illness or visible I would choose: neither.. I am sick of being tired, & tired of being sick!
13. Regarding working and career: I would so love to return to work! but I can’t it takes too much a tole out of me
14. People would be surprised to know: that I once considered modeling as a career choice.. plus-size modeling, but modeling nonetheless.
15. The hardest thing to accept about my new reality has been: the loss of so many people in my life, friends and family.
16. Something I never thought I could do with my illness that I did was: meet someone who would understand and accept me for me & all the health issues I have
17. The commercials about my illness: suck. they are all older ladies who come across as complaining
18. Something I really miss doing since I was diagnosed is: Camping, hiking.. Amusement Parks..
19. It was really hard to have to give up: Friendships & the socialization that went with it..
20. A new hobby I have taken up since my diagnosis is: colouring.. I’ve done several pieces of work for family & my medical team.. I have also got several miscellaneous craft projects on the go..
21. If I could have one day of feeling normal again I would: bask in the glory! If I didn’t have to pay for it later?? Grab all my friends (past & present) and go camping.. out under the stars, in the fresh clear air, the trees providing shelter & protection.. sitting in front of a campfire, roasting marshmallows and making s’mores.. cooking dinner outside! Chicken, Veg & potatoes straight from the coals! Yum!
22. My illness has taught me: that I can’t have whatever I want
23. Want to know a secret? One thing people say that gets under my skin is: that I should be working, not on Gov’t subsidy.. I even lost a friend with that comment. He said “Are you working or are you still milking the system!? Stop using your medical shit for an an excuse to live!” We’d been friends since grade 9, so it still hurts. :`(
24. But I love it when people: Offer to help.
25. My favorite motto, scripture, quote that gets me through tough times is: “How am I supposed to recover when I don’t even understand my disease?” ~ Girl Interrupted. White not necessarily all that positive, or in reference to a physical disease (was a mental health patient), it does show the need for more research to even understand what is wrong with Fibromites, or what causes Endo, or what CFS really is..
26. When someone is diagnosed I’d like to tell them: learn to read your body and pace yourself & do everything to keep otherwise healthy.
27. Something that has surprised me about living with an illness is: the communities of support that exist are phenomenal!
28. The nicest thing someone did for me when I wasn’t feeling well was: Opened the door for me. something so simple, but thoughtful.
29. I’m involved with Invisible Illness Week because: I have invisible illnesses and I think everyone should be aware.. awareness bring knowledge.. & that can lead to treatments, even cures, and maybe, just maybe, eradication of some of these conditions so that we don’t suffer invisibly.
30. The fact that you read this list makes me feel: Special. Thank you. & pls, let me know you were here..

While ‘National’ in the US, I think we Canucks can also spread the awareness of chronic illnesses that can not be readily seen.

What can you do?

• Post about the 30 Things About My Invisible Illness You May Not Know.. On your blog, on Facebook, Friendfeed, twitter, wherever you can be heard!
• Check out the Virtual conference at invisibleillnessweek.com with speakers and seminars all week, hosted through blogtalkradio.
• Share a seminar or speaker on your blog on your website, maybe ever write a review of what you thought of the topic of the speaker(s).. Check out the code for the feed just over half way down, titled “Want to Add Our Seminars to Your Web Site?”
• Put up a badge, National Invisible Chronic Illness Awareness Week logo! Or check here or here or here
• Blog about chronic invisible illnesses.. Your chronic invisible illness.. Spread the word.. You are not alone!
• Follow the Invisible Chronic Illness Awareness Week information on Twitter
• Become a fan of Invisible Chronic Illness Awareness Week on Facebook!
• Add Invisible Chronic Illness Awareness Week as a friend on MySpace!
• Share media information on other happenings for Chronic Invisible Illness Awareness Week
• Post articles on Chronic Invisible Illness Awareness Week
• Share with your twitter friends info on Chronic Invisible Illness Awareness Week
• Invite your friends to join you in spreading the word, & joining the cause!

What are considered invisible diseases? Some examples..
Multiple Sclerosis, Fibromyalgia, Lupus, Diabetes, Rheumatoid Arthritis, Chronic Migraines, Lyme disease, Complex Regional Pain Syndrome, Sjogren’s Syndrome, Chronic Fatigue Syndrome, (Partial) Dysautonomia, Ehlers-Danlos Syndrome, Myasthenia Gravis, Ulcerative Colitis, Endometriosis, Irritable Bowel Syndrome, Gastroparesis, GERD, Barrett’s Esophagus, Dilated Cardiomyopathy, Depression, Occipital neuralgia, Dystonia, Autoimmunity, Mixed Connective Tissue Disease (MCTD), Epilepsy, Bipolar Disorder, Tourette Syndrome, Ulcerative Colitis, Otosclerosis, Multiple Chemical Sensitivity, Hypothyroidism Hyperthyroidism, Dysautonomia, Inappropriate Sinus Tachycardia, Degenerative Disk Disease, Neuropathy, Optic Neuritis, Hypersomnia, Monoclonal Gammopathy of Undetermined Significance (MGUS), Undifferentiated Connective Tissue Autoimmune Disease (UCTD), Cancer, Anorexia, Bulimia & Compulsive Overeating, PostTraumatic Stress Disorder (PTSD), Schizophrenia, Heart Disease, Dementia.

Some of these names you’ve heard of, several I’m sure you haven’t.. I know there’s several I haven’t, but I have no reason to doubt the authenticity of the other authors of the “30 things you dunno” meme. They are the source of this list. I know there are many others but this gives you an idea of what varied conditions there are that fall under the category “Chronic Invisible Illnesses”. Be aware that 96% of all illness are considered “invisible” and you can’t usually see it.

Chronically Ill Unite September 14 to Blog About Invisible Illness Issues
by Lisa Copen

Patient bloggers band together to bring awareness to invisible illness issues from handicapped parking confrontations to why they hate hearing “You look so good!”

San Diego, CA — (SBWIRE) — 09/10/2009 — Who would guess that nearly half of the U.S. population lives with a chronic illness? But according to a study by the Robert Wood Johnson Foundation over 133 million people have an illness or condition, most of which are invisible, and many that cause daily pain. Illnesses can range from Reflex Sympathetic Dystrophy to diabetes, multiple sclerosis to fibromyalgia, or painful conditions like back pain and migraines.

Source: http://www.invisibleillnessweek.com

Five Things You Should Know About CFS
by Amanda Rinkel
May 7th, 2009

Soource: blog.su-spectator.com

Five Things You Should Know About Fibromyalgia
by Amanda Rinkel
May 5th, 2009

Soource: blog.su-spectator.com

“I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!”
– Dr. Marc Loveless
(infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, in Congressional Testimony, CFS Awareness Day, May 12, 1995)

The sole purpose of this post is to create, and potentially modify categories for this Blog. Initially, I had this categorized list.. Three columns, each with the appropriate title.. That was until I realized, well, I needed a new category.. I don’t have room for 4 columns, so I gave up on that idea . I’m just gonna put ‘em in alphabetical order and then add later as needed.