Archive for September, 2009

“30 Things…” by others

September 18, 2009

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

Jenni –

Lisa –

Diana –

Amanda –

Heidi –

Connie –

Betsy –

Heather –

Selena –

Elise –

Ashley –

Crystal –

Landileigh –

Petula –

Rachel –

Breecy –

Antti-Juhani –

TurtleMom3 –

Elizabeth –

Tricia –

Teri –

Teresa –

Lauren –

Mary  –

Natalie –

Kim –

Gina –

Ruth –

Jaimie –

DimpleGirl 78 –

Stacey –

Simla –

Eva –

Sara –

Elizabeth –

Aliza –

Michele –

Jasmine –

Lindsay –

Helen –

Deborah –

Eynn –

Melanie –

Nickie –

Kristen –

Beth –

lovies –

Steph –

Ricky –

Amanda –

Synclair –

Stephanie –

Clayton –

Barbara –

Etana –

Deborah –

Kathy –

Amiee –

Spencer –

Del –

Joanna –

CableFlame –

Rachel –

Eileen –

Teri –

Hellish Fairy –

Kimberly –

Deb –

Burnt Sienna –

Parking in the ‘Handicapped’ Spots

September 16, 2009

Can Those with an Invisible Illness Park in the Blue Spots without Others Seeing Red?

By:  Lisa Copen


OPINION, August 20,2016 /Christian Newswire/ — “Do you know the fine for using someone else’s handicapped parking permit is $300?” “That parking spot is saved for the disabled! You should be ashamed of yourself!” Nearly everyone with an invisible illness has been told, “You don’t look disabled to me!” One of my friends replied, “Well, you don’t look stupid to me.” I just bite my lip to try to prevent the tears from forming, broken-hearted that I appear to be deceptive, when I would do anything to give back this parking perk that I use on a rare occasion.


As I circle the parking lot a fourth time on this day I hope for a spot to open up within two-hundred yards of the store, but there is nothing remotely close at this bustling superstore where I need to buy my prescriptions and milk for my toddler. My rheumatoid arthritis is flaring badly, causing extra fluid in my knees to dislocate pieces of loose bones. Every step is painful and unpredictable.


Finally I sigh in resignation and pull into the farthest “blue parking spot.” I reach for the placard–the one that has a bold white symbol of a wheelchair–and no, I don’t have a wheelchair–yet. So after fifteen years of having this “privilege” at my disposal I still warily scan the area before reluctantly dangling the placard from the rear view mirror. Is there anyone watching, wondering, or waiting, ready to confront me?


I’ve had scathing notes left on my windshield and many people, empowered by television exposés, have approached me with their opinions. Judgmental expressions and whispers sting just as much. My husband and I adopted a baby and when I would get my child of the car I would avoid eye contact with onlookers because I could hear their whispers of, “She’s not disabled! Or–if she is–she has no right to have a child!”


Nearly 1 in 2 Americans (133 million) live with a chronic illness. It could be diabetes, cancer, cystic fibrosis, fibromyalgia or even chronic back pain. Many illnesses make walking long distances impossible because of limited lung capacity, physical pain, or unpredictable numbness in the legs. According to statistics provided by the U.S. Census Bureau, about 96% of these illnesses are invisible. There is no sign of the illness existing, nor the use of an assistive device like a cane or a wheelchair.


I began National Invisible Chronic Illness Awareness Week in 2002, which is held this year Sept 10-16, 2007, after witnessing thousands of people who had frustrations, fears, loneliness, and bitterness, about feeling invalidated. One’s illness, age, diagnosis, or level of disease degeneration, doesn’t change the emotional pain.


Strangers and loved ones alike doubt the severity of our illness or even the diagnosis. We’ve heard, “You look so good! You must be feeling better.” But we don’t feel better. We just bought some fake tan in a bottle and pasted on a smile.


National Invisible Chronic Illness Awareness Week is a time to acknowledge that invisible illness is more prevalent than we’d imagine and everyone–both those who are healthy and ill–can make a difference by encouraging someone with an invisible illness, rather than tearing someone down.


Are those parking spots painted blue because they give so many people the blues? That small area of square footage is a breeding ground for many frustrations as we are forced to defend our illness and character to total strangers. I’d gladly trade in my placard indefinitely for just a week of having my old body back when I could run, sit on the floor, or even hold a fork without tendons popping out of place.


I anticipate the day when a nationally designated system is formed. Texas law states that blue placards are for those who use assistive devices; red permits are for people with a “condition that impairs mobility.” In other states, red symbolizes six months of disability and blue is permanent. It’s confusing! And for one with invisible illness, the wheelchair symbol discredits both our physical pain and–in the eyes of others–our reputation. Until then, we rely on Invisible Illness Week bumper stickers.


The next time you see a healthy looking man loading groceries into his car–parked in the “blue spot”–don’t glare. Stop and offer to help him, or just smile nicely, giving him the benefit of the doubt. Seventy percent of suicides have uncontrollable physical pain as a factor. Your smile may save his life. At the least, it will astonish him, perhaps providing him with genuine encouragement he hasn’t felt for months.



Invisible Illness Week Seminars on iTunes

September 16, 2009

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?

20 Things to Say..

September 14, 2009

20 Things to Say to an Ill Person

Often times people are told what not to say. This is a great help in giving them an idea of what to say! Feel free to add your own ideas in the comments below. We’d love to hear them!

#1 I don’t know what to say, but I care about you

#2 I’m going to the grocery, what can I get you?

#3 Do you just need to vent? I’m all ears!

#4 If you need a good cry, I’ve got plenty of tissues and a shoulder

#5 I really admire how you are handling this. I know its difficult.

#6 I’m bringing dinner Thursday. Do you want lasagna or chicken?

#7 Can I get your kids for a playdate? My kids are bored.

#8 I cant sit still. Got any laundry I can fold?

#9 What can I pray for you about that no one else is praying for?

#10 Can I bring a few friends over to clean your house fast?

#11 I don’t have any idea what you are feeling, but I will always listen

#12 I saw these flowers and thought they’d cheer you today

#13 How can our church encourage those with chronic illness?

#14 Tell me what it is really like to be you for a day

#15 I made too much dinner for our family. Can I bring you some?

#16 You are amazing. How has your illness given you appreciation for life?

#17 Do you want me to come over while you wait for test results?  (or go to the doctor’s office with you)

#18 You listen to me better than any other friend. Thanks

#19 I have Monday free if you need me to run some errands or take you

#20 Tell me about this God who gets you through one more day?



20 Things NOT to say

September 14, 2009

20 Things NOT to say to a Chronically Ill Person

These lists are compliments of National Invisible Chronic Illness Awareness Weekat involved in Invisible Illness Week this year during the week of September 14-20, 2009, including the 5-day virtual conference online.

#1 You look so good today!

#2 You just need to get out of the house more.

#3 If you stop thinking about it, the pain will go away.

#4 You should just pray harder.

#5 You must not want to get better if you wont try this…

#6 When I was your age I didn’t have the luxury of being sick.

#7 You’re sick again?

#8 I wish I could just sit around all day.

#9 No pain, no gain!

#10 I’d be sick too if I saw doctors as much as you do.

#11 I have this juice that is working wonders!

#12 You must still have sin in your life.

#13 If you got a job you would have something else to think about.

#14 Your illness is caused by stress.

#15 You can not be in that much pain. Maybe you just want attention…

#16 What have you done to make God so mad at you?

#17 There are easier ways to get attention.

#18 It’s not good for your kids to always hear you whining.

#19 When are you going to get rid of that cane?

#20 I’m so glad to see you out and about feeling all better.


I have to disagree with #1 in some situations. If someone is chronically ill, especially those with an invisbile illness, and it looks like they have put forth the effort to look better, then compliment them! I’d rather hear I look good when I’ve done myself up a bit. It’s nice to know others notice as well.. You have to know what this person ‘normally’ looks like and the amount of effort usually put into their personal appearance. A bit of makeup & a good hairbrushing into a simple style with a nice set of clothes can change how a a person look easily! Myself, if I have spent time on my hair, put on makeup, that’s a sign that I am having a decent day & want to look nicer.. However, wearing a dress isn’t necessarily a sign cuz for me dresses are generally easier to wear than slacks and a blouse. Others might find wearing a dress to be too stressful

If they just look ‘healthier’, be wary, it might be & could easily be a facade.. If you take the time to look, you will know the difference..

30 Things You May Not Know

September 14, 2009

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..

Invisible Illness Awareness Week

September 13, 2009

September 14 – 20 2009
is National Invisible Chronic Illness Awareness Week

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?

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.

Blogging for Invisible Awareness Illness Issues

September 13, 2009

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

*Image Removed*
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.

With 75 percent of internet users using the internet for health information (Pew Internet Project, 8/08) and many of them seeking support, thousands of bloggers now post daily journals about the emotional challenges they face with daily chronic pain.

National Invisible Chronic Illness Awareness Week, September 14-20, 2009, invites bloggers to have a significant role in their awareness campaign. For example, part of their outreach has been featuring guest bloggers on their own web site , as well as inviting bloggers around the globe to commit to blogging about invisible illness issues. To help spread the word they have also create a meme, “30 Things About My Invisible Illness You May Not Know” that people have posted on Facebook, blogs and other social networks.

Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though our illnesses and symptoms may vary, we still have a great deal in common. We can learn from one another about coping and finding the balance of taking care of ourselves yet living life to the fullest.” Copen says patient blogs aren’t depressing like healthy people may assume. “Illness bloggers don’t typically dwell on the logistics of symptoms, lab tests, or hospital stays. Instead, they write on everyday topics and how their illness impacts their families, finances, careers. They may discuss patient advocacy issues, but they also write about vacationing with an illness or dating when you have a chronic illness.”

Invisible Illness Week was recently the host of Grand Rounds, the largest medical blog carnival on the internet.

Over 300 people have officially committed to blogging for Invisible Illness Week so far and many are sharing on their Facebook notes page or other social network. Copen encourages those who do not have a blog to shares something about their illness with Facebook friends, a few Twitter posts, or even in the comments section of the web site.

If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see for details. Invisible Illness Week’s highlight is a 5-day virtual conference with 20 speakers that can be heard online for free on a topics such as marriage with illness, applying for disability, setting boundaries, and when your child is ill.

Copen is also the founder of Rest Ministries which sponsors the event and for anyone who “tweets” on health or medical conditions.

Media Relations Contact

Lisa Copen
National Invisible Chronic Illness Awareness Week


How to Act Right When Your Spouse Acts Wrong

September 7, 2009

How to Act Right When Your Spouse Acts Wrong

How to Act Right When Your Spouse Acts Wrong“I loved this book,” says Lisa Copen, Rest Ministries director. “And the back cover says, if you aren’t married to Jesus this book applies! We’ve all been on both sides of the fence… It’s a great eye-opener to tough questions the Christian community usually buries.”

How to Act Right When Your Spouse Acts Wrong - Coping with Illness in Your MarriageWhen your husband or wife has a chronic illness there are many times that the relationship is at risk of breaking down in communication. We wonder why our husband copes with depression when the wife has the chronic illness; what happens when you have an illness and then your spouse gets cancer? And the lack of intimacy can threaten the strength of your bond, even when it’s due to chronic illness and health challenges.

Believe it or not, you can experience what Leslie calls the “Blessings of an Imperfect Marriage.” At one time or another we have all had the opportunity to act right when our spouse acts wrong, because perfect marriages and perfect spouses don’t exist.

We know that having a good marriage requires effort and hard work. Yet we often don’t know how to continue to love when we are angry, hurt, scared, or just plain irritated. Do you find yourself fighting with your spouse over every little thing? Are you afraid it could lead to divorce?

Should we be patient? Forgive and forget? Do something else entirely? This book will help you understand why your spouse acts the way he or she does, learn when to guard your heart, how to respond to difficulties within the relationship in ways in which God would be proud.

This book will help you discover how God is stretching you in the midst of your marital problems, teach you to respond wisely when wronged, and lead you into a deeper relationship with Christ as you yield your will to his plan for your life and learn to be more like him.

Author: Leslie Vernick, ACSW, LCSW, is a licensed clinical social worker who has her own private counseling practice and more that twenty years of experience counseling Christians from a biblical worldview. She received her master’s degree from the University of Illinois and is an adjunct professor at Philadelphia Biblical University. She is a popular speaker for women’s groups, couple’s retreats, and professional seminars.

Random House, Inc., 224 pages, paperback


Yes, I am aware that this is a article promoting a book, but I think it looks like a book that could be very useful for many couples, and not just marriages, but other relationships aswell. I’d be intere4sted in any feedback if anyone has read this. It was recommended by a fellow fibromite, Lisa, on twitter, so I’m trusting her judgment & posting this.