Should I Feel Guilty When I Have a Good Day?

By Tiffany Christensen

Is joy salt in the wound or hope for tomorrow?

Before writing this, I wanted to look up the definition for the term “mindfulness.” It is language I am using more often and the basis for this blog entry. However, it took me seconds (via google and wikipedia) to learn the term has many meanings and I could not find a definition for how I use it personally. Hmmm. Did I make it up and all this time I have been misusing this term?

Either way, mindfulness as I defined it somewhere, somehow, along the way is being aware of oneself (internal and external awareness) while also being aware of how one’s actions, speech and thoughts might effect others. For me, this primarily means the people I care about because I feel far to overwhelmed when I consider being mindful of everyone on planet earth!

So, with this approach in mind, I find myself with a question for my blogging friends.

There are so many people in my life who are suffering. Many of them are friends I don’t know IRL (in real life) but their struggles permeate my thoughts often despite the lack of physical presence. In addition, people in my RL are struggling in a variety of ways. Primarily I am referring to physical struggle, serious illness etc, but at times this can mean emotional struggling also.

More and more, I find myself feeling a compulsion to hide or downplay the sweet parts of my life. It is not that I don’t have struggles, I do, but they pale in comparison to the people I know living day to day for another breath.

This compulsion comes from a place of “mindfulness” as I define it. It seems hurtful to me to sing the praises of my life when I know others are suffering so. I feel as though I should keep any of my good fortune to myself out of respect to those who are sad, scared and hurting.

I suppose I have some silly notion that when everyone is “all better” and the suffering is gone, I will again shout from the rooftops my love of this life. But, of course, the suffering will never end. One person will recover and another will suffer. This is life. One day the suffering will be mine again.

So, am I ridiculous? Can you relate? Am I on to something or out of my mind?

When you are suffering, do you like to hear of the joy in other’s lives or is it like adding insult to injury?

Should I follow this instinct I have and practice my made up version of mindfulness or should I share my happiness even with those who currently suffer?

What do you think?

After spending over 30 years in and out of hospitals, Tiffany Christensen realized that she had a lot of practice at being a patient! After getting her first lung transplant for cystic fibrosis, she found herself waking up in ICU with another set of donor lungs only 4 years later. She is the author of “Sick Girls Speaks” and “We are the Change: Transforming the Healthcare Experience through Partnership”, a speaker and a patient blogger at Sick Girl Speaks.

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When Illness Hits a Young Married Couple

By Ashley

My husband, David, and I are in a somewhat unique situation with our invisible chronic illness. Although I am the caregiver, and he is the one with debilitating pain from Psoriatic Arthritis, he is the one that goes to work every day. David is a computer programmer. He sometimes works from home, and his schedule is somewhat flexible. We are blessed that he has a job he can perform even with his disability.

My job is to do everything I possibly can so that going to work is all that David has to do. I call his doctors, pick up prescriptions, duke it out with the insurance company, walk the dog, clean the house, prepare meals according to his dietary needs, get the oil changed, etc. I do it all so that when David gets home at night, he can rest. Dinner is usually ready, and he can lie on the couch watching a movie or playing on his laptop.

I used to get frustrated that David was disabled instead of me. I could be the sick one. I’m home all day anyway. David’s a great husband. He’d take care of me.

I used to think that . . .

Until David finally told me that if I was the sick one, he’d still have to go to work, and then come home and do most of the things I do for him. (Which is exactly what many caregivers have to do.) If I had his arthritis pain, I wouldn’t be able to walk the dog or grocery shop any more. David said it’s really better this way. God knows exactly what he’s doing. I may not always understand or trust God the way I should, but he is sovereign.

Matthew 10:28-31 (NIV) says, “Do not be afraid of those who kill the body but cannot kill the soul. Rather, be afraid of the One who can destroy both soul and body in hell. Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from the will of your Father. And even the very hairs of your head are all numbered. So don’t be afraid; you are worth more than many sparrows.”

I asked David what advice he would give another couple with chronic illness. His answer is one I can’t top:

“There are days when I’m in terrible pain, and Ashley goes out of her way to help me. Then there are days when I’m in terrible pain, and I go out of my way to help Ashley.”

“A Young Wife” suffers from TMJ Disorder. She loves Diet Coke and spoiling her dog, Henry. In February of 2008, her husband, David, was diagnosed with Psoriatic Arthritis. Having a chronic illnesses as a young married couple has changed their lives. Visit her web site, A Young Wife for more encouragement.

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Wesley United Methodist Church in Morgantown, WV Offers TONS of Activites and Hope!

We just saw this posted on Facebook and although we were aware of Christina’s group beginning we had no idea just what she was planning! Pleeease don’t feel as though you must attempt to live up to what this “Super Woman” is doing, but it is a list of some fabulous ideas (Prayers at Panera!) And the next time your church says they just can’t commit to starting a HopeKeepers group or a potluck seems like so much trouble, print this out to show the pastor an example of a church that has some passion!

-ljc

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LOCAL CHURCH HOSTING ACTIVITIES DURING NATIONAL INVISIBLE CHRONIC ILLNESS AWARENESS WEEK
SEPTEMBER 14 – SEPTEMBER 20, 2009

Wesley United Methodist Church, located at 503 N. High Street in Morgantown, WV, will be hosting numerous events during National Invisible Chronic Illness Awareness Week (September 14-20, 2009). These events are open to anyone in the community who is seeking support in a Christian environment to cope with the effects of living with chronic illness, chronic pain, or disability. If you have questions, please contact Christina Werdebaugh, HopeKeepers® Group Leader, at (304) 692-9199 or Wesley United Methodist Church at (304) 292-9485.

PLEASE NOTE THE FOLLOWING SCHEDULE OF EVENTS:

• SEPTEMBER 13, 2009 –Christina Werdebaugh, HopeKeepers® Group Leader, will speak briefly at both the 8:30 and 11:00 services about the upcoming weeks’ activities, and will be available after both services in the Lecture Room to answer any questions you may have. Please check the Sunday Bulletin for updates and more information about the HopeKeepers® Small Group/Bible Study as well the events planned here at Wesley, and in the community, in recognition and to raise awareness of National Invisible Awareness Week.

• SEPTEMBER 14, 2009 at 7:00 pm, is the first meeting of HopeKeepers® at Wesley! We will meet in the Lecture Room at the Church. Our first night together will begin with a special gift of music, followed by a time of fellowship to get to know one another and enjoy some light refreshments. Then, we will begin with Chapter One of our first Bible Study together entitled, “When Chronic Illness Enters Your Life” by Lisa J. Copen. This particular study discusses topics such as “Where Is God When It Hurts?” and “Lord, I Just Don’t Understand!”

• On Tuesday, SEPTEMBER 15, 2009 at 7:00 pm, Wesley will host a Prayer, Healing and Anointing Service for our HopeKeepers® Group Members and all others who desire to attend! We are extending a special invitation to the other HopeKeepers® Group in our local area, as well as the family members and caregivers of those suffering from chronic illness/chronic pain, or disability. We welcome everyone who wishes to attend this service to receive support and prayer for themselves or on behalf of another. Rev. Michael Atkinson will lead this special service which will be centered around the greatest healing of all, the reunion or reconciliation of a human being with God. Although physical healing does often occur, this worship experience provides an atmosphere in which mental and emotional balance is often restored, spiritual health is enhanced and relationships are healed. The purpose of this worship experience is to renew and strengthen one’s relationship with the living God. This service will also be filled with music during our times of prayer and outreach to those in need. Our souls, hearts and minds will be comforted by the musical offerings of Stan Farr and Joe Andria, members of our congregation, in addition to the soothing sounds of a local harpist, Katie Zucker, and a trio, Andrew and Elizabeth Wotring-Nelson and Rebecca Speakman. We are thankful to all of these musicians who come forth to share their gift of music before the Lord in support of those suffering from chronic illness/chronic pain and invisible or visible disabilities.

• On Wednesday, SEPTEMBER 16, 2009, at 6:00 pm, Wesley will host a “potluck supper” at the church for our new HopeKeepers® members and their families and caregivers, as well as all HopeKeepers® Groups (and their families and caregivers) in the area. All members of our congregation and the community who wish to come and support this important ministry and outreach are welcome to attend this opportunity to share in fellowship with those needed our prayers and encouragement!

• Thursday, SEPTEMBER 17, 2009, at 7:00 pm, will be an opportunity for our new small group to meet the other local chapter of HopeKeepers® at the Morgantown Church of God located on Mississippi Street. It will be a great opportunity to fellowship with the other Hopekeepers® Group in our area.

• Friday, SEPTEMBER 18, 2009 12:30pm – 2:00 pm at the VIP Room at Panera in Morgantown, WV Wesley HopeKeepers® will host “Prayers at Panera”. We plan to meet during the day on Friday to provide an opportunity for those who may not have been able to attend some of the weeknight events due to scheduling conflicts, etc. This is also open to anyone who did attend the other events and would like to join us to enjoy some additional prayer and fellowship time as part of the HopeKeepers® Group at Wesley. Morgantown Church of God’s Chapter of HopeKeepers® is also invited to join us for “Prayers at Panera.”

• On Sunday, SEPTEMBER 20, 2009, Christina Werdebaugh, HopeKeepers® Group Leader at Wesley, will participate in the both the 8:30 and 11:00 services to offer her perspective on perseverance and keeping faith in God despite living with chronic illness/chronic pain or disability, and how we, as a church, can reach out to those suffering from chronic illness/chronic pain, invisible or visible disabilities. A punch and cake reception in honor of HopeKeepers® and II Week will be held following the 11:00 service, hosted by Christina Werdebaugh.

Contact: Christina Werdebaugh, HopeKeepers® Group Leader
(304) 692-9199 or cjes2000@hotmail.com

Wesley United Methodist Church
(304) 292-9485
503 N. High Street Morgantown, WV 26505

Additional information can also be found at www.invisibleillness.com

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R U on MySpace? Add us as a Friend & Tell Others

Are you on MySpace? Yes, we know a lot of people have moved over to Facebook but there are still millions of people on MySpace, many of them teenagers or your adults and we would love to have them know about Invisible Illness Week and especially the seminar with Naomi Kingery on Being a Teenager with a Chronic Illness.

Our web page over at MySpace is www.myspace.com/invisibleillnessweek Be sure to click “add to friends” and invite your friends to join us too. It’s one more way to reach some people who we would otherwise not reach.

And if you are on MySpace, be sure to fill out our meme “30 Things and post it on your blog at MySpace and even announce it on your bulletin feature.

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Invisible Illness Week Features Virtual Conference and Fresh Awareness

CONTACT: Ms. Lisa Copen, founder & director
858-486-4685
www.invisibleillness.com

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Invisible Illness Week Features Virtual Conference and Fresh Awareness

Did you know that nearly 1 in 2 people in the USA have a chronic illness?* And despite assumptions that most illnesses are a mild inconvenience, if you ask those who live with a disease or chronic pain, you will find it drastically changes their lives. An invisible illness can be a disease that is nearly always unseen like chronic fatigue syndrome (CFIDS) or heart disease to one that progresses from invisible to visible, such as multiple sclerosis or rheumatoid arthritis. One thing is certain: those with chronic illness desire to connect with one another and live life to the fullest. . . but they may not be able to travel and sit through a typical conference.

This is where National Invisible Chronic Illness Awareness Week, September 14-20, 2009 excels, offering a 5-day virtual conference, where all speakers are available to listen to LIVE or later (all session are archived.) Monday through Friday, 9/14-9/18, anyone can log on to www.invisibleillnessweek.com and hear illness experts 4 times a day and even call in with their questions after the presentations. Last year’s shows have had over 12,000 listeners and are also available on iTunes.

There are a wide variety of topics including:
• Finding Health Insurance Coverage with a Pre-existing Condition
• Coping with Chronic Illness in Your Marriage
• Having Your Own Business When You Are Chronically Ill
• Simplifying Your Home and Housework
• Parenting When You are Chronically Ill – Chaos and Confessions

The theme this year is “A Little Help Gives a Lot of Hope.” Thousands of people have joined the cause through social media tools like blogging for the cause, a blog tour, a Facebook Cause and fan page, and Twittering about the event with the hashtag #iiwk09.

Lisa Copen, 40, is the founder of National Invisible Chronic Illness Awareness Week and has lived with rheumatoid arthritis and fibromyalgia for sixteen years since the age of 24.

“We all live with a variety of symptoms and the severity of the pain often changes or moves from one area to another on a daily basis,” says Copen. “But there is an underlying feeling that those we love the most don’t fully comprehend what we cope with minute to minute or the choices we make just to ‘have a life’. This can be more devastating to some than the actual physical pain.”

Copen, who was the recipient of the Audience Choice Our Bodies Ourselves Women’s Health Hero Award this spring says, “We hope to unite some of the millions of people who live with chronic pain and illness silently by offering an oasis of hope and understanding. Illness is never fun, but we hope to connect people to encourage one another, as well as host some fabulous workshops to help people live their best life possible.”

For details visit the web site, http://www.invisibleillnessweek.com

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*Source: Chronic Care in America: A 21st Century Challenge Revised

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• Can Those with an Invisible Illness Park in the Blue Spots Without Others Seeing Red? (invisibleillnessweek.com)

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CFIDS Asks “What Do You Wish People Understood?”

The CFIDS Association of America recently asked in a survey, “What is the one thing you’d like your family/friends to really understand about CFS?”

Unfortunately, we could only find the answers in their Facebook notes, here, but you can read more about the survey results at their web site here.

Thumbs up for CFIDS Assn for creating more awareness.

Related articles by Zemanta

• The CFIDS Association Position On Swine Flu (fightingfatigue.org)
• Teen with ME/CFS Would Rather Have Cancer (fightingfatigue.org)
• 25 Random Things About CFS (Courtesy of CFIDS Association) (fightingfatigue.org)

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6 Reasons I Support Invisible Illness Week

Feel free to copy and paste this and edit it to use as your own! It’s great for blogs, Facebook, etc.

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6 Reasons I Support Invisible Illness Week

1. Surprisingly, nearly 1 in 2 people in the USA have a chronic condition and most of them are invisible.
2. There are too many people suffering silently, believing no one cares. I want them to know I do care.
3. I will likely accidentally say the wrong thing at some point, but I still want to learn how to say what encourages someone with illness best.
4. 70% of suicides are the results of “controllable physical pain.” We never know that we may be the last person someone looks toward for hope and a reason to live.
5. Illness is one of the most lonely experiences a person can have. It doesn’t have to be that way.
6. People with illness are often bombarded with advice. I want to be a safe haven for those with illness who just need someone to listen.

Add your own and tell someone!

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Have You Told Your Pastor About II Wk?

Have you asked your pastor about setting up a display table for National Invisible Chronic Illness Awareness Week? Sunday, September 20, is the last day of Invisible Illness Week making it the perfect time to have a table with rack cards, some encouraging books, and other little goodies.

It’s an excellent time for a church to have a person with a chronic illness get up and share his or her testimony. A pastor may be interested in having a sermon related to chronic illness; topics may include: how to choose joy in the midst of difficult circumstances, how to give the gift of encouragement, living with chronic pain, when God doesn’t answer prayers.

And are you leading or thinking of starting a HopeKeepers Group? It’s a nice way to introduce your congregation to your group and discover who may be interested.

Want to find a way to explain II Week to your pastor? Here is an “email your pastor template” you can personalize.

Here are some articles of interest:

• What I’dLike to Tell My Pastor About Living with an Illness

• 6 Ways to Let Those with Chronic Illness in Your Church Know You Care
• 7 Secrets The Chronically Ill Want Chaplains to Know
• Hospital Visits: What Do You Talk About?
• Minister to the Chronically Ill: 20 Ways in 20 Minutes
• What’s the Big Deal About Church?
• When a Friend Has a Chronic Illness: What to Say, How to Help

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20 Things Not to Say to an Ill Person

People have good intentions when they say things to someone with an illness, but it comes out all wrong. #iiwk10

Join us for 20 tips in 20 days on what NOT to say to someone who is ill – Please RT! #iiwk10

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#iiwk10-Things NOT to say to an ill person #1 – You look so good today! – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #2 – You just need to get out of the house more – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #3 – If you stop thinking about it, the pain will go away – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #4 – You should just pray harder – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #5 – You must not want to get better if you won’t try this – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #6 – When I was your age I didn’t have the luxury of being sick – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #7 – You’re sick again?? – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #8 – I wish I could just sit around all day – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #9 – No pain, no gain! – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #10 – I’d be sick too if I saw doctors as much as you do – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #11 – I have this juice that is working wonders… – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #12 – You must still have sin in your life – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #13 – If you got a job you’d have something else to think about – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #14 – Your illness is caused by stress – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #15 – You can’t be in that much pain. Maybe you just want attention – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #16 – What have you done to make God so mad at you? – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #17 – There are easier ways to get attention – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #18 – It’s not good for your kids to always hear you whining – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #19 – When are you going to get rid of that cane? – see more http://ow.ly/eYpo

#iiwk10-Things NOT to say to an ill person #20 – I’m so glad to see you out and about feeling all better – see more http://ow.ly/eYpo

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Feeling “Like the Dog…”

The first story (snippet) is an excerpt from a story I am working on (indefinitely- LOL) and although you may not understand why I’m starting off with this… um- it’ll come to you pretty soon. [wink]

“Wilson! For the last time- will you be quiet?” Harmon was simply at his wits end. If that dog didn’t stop barking and yelping he would possibly kill that animal. Well, he wouldn’t kill him. He loved Wilson and enjoyed his company- especially during the last few years. But can’t a man get some sleep around here? Harmon’s thought were interrupted when once again the night was filled with angry barks and growls and was that dog actually howling?

Please! Thought Wilson, as he whined and paced back and forth in the Kitchen. Not knowing what else to do, the small black terrier-mix ran to his owner and stood up on his hind legs and whined louder- more intently while pressing his front paws against his Master’s legs, begging Harmon to pay attention to what he was trying to tell him.

“Stop, Wilson. Get down” was his only response. It’s not that his owner, Harmon was a bad man or unloving towards Wilson. Since the day he arrived, Harmon has always been loving and playful with him.

Even after the Misses went away, Harmon seemed to need and want Wilson around even more. But tonight when Wilson heard, no- felt- sensed that there was urgency… danger outside, Harmon was not happy that he’d been awaken and did not understand the seriousness of the situation.

“Wilson-” Harmon’s voice became gentler, calming “I’ve looked outside, I’ve checked every window- heck, I’ve been in every room in the house. There is nothing going on. No one is outside.” Harmon bent over and picked up his little friend, despite the pups protests and started for the upstairs bedroom.

“Now come on, Boy. You can sleep with me and we’ll have a nice breakfast in the morning.” Wilson enjoyed sharing Harmon’s breakfast with him and hoped that breakfast really would take place in the morning. But as his owner stroked his head and ears, continuing toward the bedroom… away from the outside presence- Wilson knew he was right and that his owner probably should have listened to him.

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Sitting in the small, white and confining room Joy felt as if every hope, every longing to be well hinged on this one visit. You’re being foolish, she thought to herself. This isn’t the first time and it most likely won’t be the last. True- she had been to several physicians prior to this one, but maybe- just maybe he’s the one.

Just sitting there, waiting was causing so much pain. Joy shifted her weight on the chair, trying to find a more comfortable position. Why, she thought, do doctors who treat patients in pain have the most uncomfortable waiting chairs in the world? As the door opened, she jumped- feeling a little guilty about the chair thought and then was simply thankful that mental observations and complaints were silent!

“Well, how are we doing today?” Such a simple and rhetorical question. Every doctor she had ever visited started the visit out the same way: how are we doing today? How do you answer that? Fine? Okay? Not good?

Is this question part of the visit or a social formality to be quickly gotten out of the way? If she said good or okay- wouldn’t that just be a lie? Do you really get lie-bumps on your tongue when you, uh- lie? Joy opted for an escapism. “Well…” was all she said, hoping he would take it from there and solve all of her problems.

Flipping the medical chart open and thumbing through the thick stack of paperwork, it seemed as if the doctor were reading it for the first time. “So,” he began, sitting down on the little stool with wheels and scooting closer, “What can we do for you today?”

Good grief, Joy thought and answered slowly, tentatively. “You had me go for a full work-up of tests and scans and I’m here for the follow-up.” Holding her breath she waited for the answer- or answers- or at least something to validate or explain the pains and problems and issues she’d been dealing with for so long now. What will he say, she thought to herself. Please, please let him say he knows what’s wrong with me.

“Well, the good news is we didn’t find anything abnormal with any of the images and your blood work was fine. What’s your main complaint?”

Joy screamed- loud inwardly. Why, why won’t anyone believe me- there is something wrong. I was fine- healthy for years and active and now can hardly move!

Just staring at him and holding back the tears that threatened to expose how hurt and frustrated she was was all she could do. Not waiting for a response, the doctor opened the folder again and said, “We could try changing your Anti-depressant or we have room to increase your Vicodin some more. Is there anything else I can do for you?”

The second story is really a compilation of several visits- one just as horrifying as the previous but it occurred to me last night that the part of the story I’m working on was the perfect analogy of what so many people (including me) go through when what they are suffering with or experiencing can’t be seen on an x-ray or under a microscope.

I’m not going to tell you what happens in the story with Harmon and Wilson. [LOL] Don’t ask me. I will say they are only a small part of the novel I’m writing and ‘hope’ it will be finished, um- never mind; I don’t know when!

But Wilson’s dilemma in trying to make Harmon understand that there really is something wrong- whether or not he sees, hears or knows it- it’s real.

My dilemma, along with many other men and women is that we know- know that something is not right, something is wrong within our physical body… but no one can see it yet; no one can find what it is yet; no one has been able to help us yet. What is the purpose of this entry? Perhaps it’s to create an awareness for the term Invisible Illness.

Maybe it’s to spark some interest in more research to finding answers for what is causing the symptoms; and not just label the mystery health issues as chronic pain. Or it simply could be a way for me to vent, release and heal myself of the day-to-day abuse of living with severe pain and health problems.

Maybe it’s just me hoping that someone, somewhere will listen and believe me and not just pat me on the head, up the dose and send me to bed and promise me breakfast… like the dog.

Invisible Illness Awareness Week is September 14-20, 2009. What can you and I do to help make more people more informed and understand the issues, problems and uncertainties surrounding it?

National Invisible Chronic Illness Awareness Week is probably the single most important issue in my life currently. It is important of raising the level of information and understanding of the problems when living with an unseen adversary and its effects. If it sounds like I am making this matter seem as if it is life and death- it is because for me… it just may be.

Joy lives in a small town in the Midwest, USA. She and her husband have three adopted children whom they home school. Prior to becoming ill, Joy was the System Admin for the local library full-time and part-time worked and volunteered at the local Homeless Shelter/Food Pantry.

When not teaching the children, Joy spends her time blogging about her continued journey to wellness and writing fiction, painting and enjoying the world of The Sims 3. On days she is not physically able to participate in hobbies- she is comforted and encouraged by God’s Word, her family and her fur-babies: a pack of Bichon Frise.

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