Archive for September, 2008
Last night I had the pleasure of listening to the talk given by Jo Franz during National Invisible Chronic Illness Awareness Week. Jo’s talk was entitled “How To Help Those Who Help Us”. Jo Franz has had Ms since 1977, so she knows of what she speaks. She has a wonderful website JoFranz which is worth taking a look at. She has also written a book, “Soar Unafraid: Learning To Trust No Matter What“, which I am looking forward to reading after hearing her speak.
I got to thinking about friendships after listening to the talk. I think one of the best points made about being a friend to someone with chronic illness is that often people don’t realize that the chronic-ness of the illness does not mean that it is going to remain the same. In fact, for many of us the process is degenerative. Because of this fact, many times we are left alone and forgotten. Both Jo and National Invisible Chronic Illness Week founder Lisa Copen, talked about how much it would mean for people who are our friends to check in on us regularly and be consistent in our lives and with their help to us.
All of that got me thinking about what kind of friend I am and what kind of friends I am looking for. For instance, it is easy when I am battling a flare to let things go, after all, I don’t feel well right? And while I am not one to beat myself up, I also realize that to the best of my ability I need to remain aware of what is happening in my friends lives even when things aren’t going so well in my own.
The people I am closest to have always told me how much they appreciate the fact that despite my illness, I make time for them and their problems. I remember their birthdays, anniversaries and kid’s birthdays. If they are going through a rough patch in their life, I try to send a card of support or encouragement, or even leave a voice or e-mail message just letting them know they are in my thoughts and prayers.
By being a good friend, I model the behavior I appreciate receiving myself and I get to show my love for the people I care about.
I think it is easy to fall into the trap of feeling let off the hook for some of our friendship responsibilities because we have additional obstacles in our lives. My experience has shown me that is a dangerous attitude to take. You let your friends down, and ultimately you let yourself down. After all, don’t we want to treat others as we wish to be treated?
What kinds of things do you do to be a good friend to others? What things do your friends do to help you that you especially appreciate? How has someone gone out of their way to help you? Have you had the opposite experience, such as the one I spoke of in my post on Friendship and Invisible Illness Week?
Please let me know your experiences with being a friend, and with finding friends who are supportive and understanding for the long haul.
Maureen Hayes, 41 years old, has been living with multiple chronic illnesses including chronic pancreatitis, fibromyalgia, endometriosis, adrenal insufficiency, arthritis, reynouds syndrome, IBS, interstitial cystitis, multiple medication allergies, to name a few, for the last 30 years. She is on disability due to her illnesses, but lives with, and helps to care for, her 75-year-old mother. She is active in her church, especially in visiting the sick and homebound. She was inspired by National Invisible Chronic Illness Week and many of the speakers, and began her own blog Being Chronically Ill is a Pill! as a result. She enjoys writing, reading, scrapbooking and photography. She hopes to follow in the steps of many of the speakers and participants of IIAW by trying to raise awareness of invisible illness, provide help and support to those who suffer from them and to launch her own business in this area.
Here is a scary statistic: approximately 75% of marriages, where at least one persona has a chronic illness, end in divorce. With only one in four couples being able to have both partners keep the sacred covenant of “in sickness and in health” what can you do to increase your chances of not just having a marriage that survives, but one that is also a joyful union?
I recently had the opportunity to preview the movie, “Fireproof,” in theaters September 26, 2008.
Actor Kirk Cameron plays a fire chief and a man who is well-respected by those in his community. But his marriage is nearing the end. It’s not because of an affair with another person, or some dramatic event that takes place; but rather because, day by day, both spouses take one another a little more for granted and move away from each other than toward each other. Both are searching for validation of their emotions and even simple appreciation.
Here are 8 reasons I believe every married couple who copes with chronic illness should see this movie:
- The dialogue is real, as if the writers were hiding behind the furniture of living rooms around the world and eves-dropping on actual conversations, arguments and threats. Let’s face it… real fights are most often about who has done the dishes. You won’t find the typical Hollywood lingo in this film like, “You had me at hello.”
- The burden of care-giving is addressed. The “wife” in the relationship has a mother who has recently had a stroke. The expense of the medical equipment she needs, like a wheelchair and a bed, is shown in this film, something nearly always overlooked in your typical movie. Though this situation may be dissimilar to yours, it’s helpful to see illness and its impact on a marriage acknowledged as a stressor in a marriage relationship.
- It will make you laugh. Just because the emotions run deep enough to bring on many tears in this movie, doesn’t mean you won’t find yourself laughing through those tears at times. Even if your marriage is “perfect” and you think you don’t need a boost, it’s a move night to share with your spouse just for fun. The firehouse crew is and the little things the actors do, where you see yourself, will bring smiles to your face.
- It tells both sides of the story. Whether you are the spouse who is trying to make your marriage work, or the one who just wants out, you’ll find many of your emotions and fears represented. Though the husband in this film is made out in some cases to have been the one with some “problems” the wife isn’t without room for improvement in how she treats her husband either. A surprise twist at the end will leave you with a reminder that no one is perfect, regardless of how they may appear to be.
- It’s packed with real life scenarios, including those of a fireman. This isn’t a cheap flick with a strong message, but a strong film that happens to have a solid message. If you love those “edge of your seat” movie scenes when you are eating popcorn as fast as you can get your hand to your mouth, you won’t be disappointed. If you’re a woman, you can rest easy that there is plenty of “guy stuff” in this movie that won’t make your man feel like he’s at a chick flick.
- Kirk Cameron yells. Okay, maybe not one of the top reasons to see this film, but watching him lose his temper and kick a trash can may just leave the men (or women) in the audience feeling like they aren’t being judged of silly behavior or lost tempers. Most of us have had a situation where we’ve wanted to please our spouse and their response made us want to go kick something, right?
- It provides a tool to take along. The book “The Love Dare,” which the actor works through to win his wife’s heart back, may seem more like a way for the movie makers to make an extra buck. It’s not. In fact, all actors worked for free. The book is rather a way that you can take something tangible away from the film and literally start applying it to your own marriage. As my mom and I left the theater the guys beside us exchanged words. “I guess I have to go order my wife some flowers now… but it’s going to cost me a fortune!” “Hey, weren’t you listening. It doesn’t matter how much they cost.” The great thing is, if you’re on a budget, expensive flowers aren’t required; it’s the actions.
If I was a Christian counselor I would hand couples the DVD (when available) and tell them to go watch it together before our first appointment.
A nice plus is the “behind the scenes” honor that actor Kirk Cameron gives his wife by keeping his own promises: he vowed to her (despite being an actor) to never kiss another woman. So his wife was flown in for the kiss at the end of the film, where she stood in for the actress. He’s been married seventeen years, is the father of six children, and a strong believer in Christ who is not ashamed to proclaim it. That makes me want to listen up to what he has to say. He’s made the rounds this week as the film is about to release, on the Today Show, Dr Phil (9/25/08) and many more and he has done well. Despite some over-eager or even rude (names not mentioned) interviewers, he has represented Christ well. He’s come a long way from the posters on my little sister’s wall!
And on a side note, you may be interested to know he founded a camp over twenty years ago, Camp Firefly, for chronically ill children and their families. (Go, Kirk!)
As the founder of Rest Ministries which serves those who live with chronic illness, I firmly stand behind this movie as being one of the best to impact a marriage. It may be the two best hours you give your marriage since the day of your vows.
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Instead of having surgery in 2 hours on my right hand I am sitting up on the computer, working on getting HopeNotes, our weekly ezine out.Surgery had been postponed. And I am bummed.
The edema I suffered with in my right foot the week of II week turned into cellulitis on Sunday, with a trip to the emergency room, and then another one to the doctor today since it’s absessed.
Isn’t life unpredictable?
So… for the moment I am glad my right arm is not in a cast, but I have been a “patient in pain” for the last few days, barely able to walk, etc. and surgery hasn’t even occurred yet.
Why do I want to have surgery? Well, for one, I was all mentally prepared. I had the next 3 weeks crossed off on my computer.
Plus, the surgeon also expressed his concern that my hand did need taken care of soon before a major tendon ruptured (My right wrist bone is pretty big and sawing down the few tendons I have left in that hand). I can’t pick up a mug of coffee, put on shoes, turn the steering wheel, nothing, without it clicking and being in pain.
But, being a patient on auto-immune suppressant medications… and now an infection… there is no way surgery can happen right now.
Most healthy people may think, “Oh, no big deal; so you have to reschedule.” But it you are like me, you know the recovery period is much longer than typical for any surgery when you deal with illness. I also will have a cast that goes about my (bent) elbow on a shoulder that needs joint replacements. So my mom had flown down from Oregon for 2 1/2 weeks to help pick my son up from school, entertain him, take care of me, etc. It just throws everything off, ya know?
Who wants to do rehab during the Christmas season?
I know God has re-arranged all of this for some reason, but He didn’t consult me on the convenience factor. I had a good plan! And am a bit whiny about it (can you tell?)
Anyway, for those of you who had been praying for me, etc. thank you! Keep them up, because I still need them. I’m wiped out and the infection and not being able to walk much is just draining. I’m up working because I am trying to distract myself from the feeling of needles poking my ankle and foot.
I will be doing some postings soon here, but in the mean time, if you want to know what’s going on over at Rest Ministries (and we have lots of interesting little news bits, even if you aren’t a believer, so don’t let that scare ya away) you can sign up by clicking here firstname.lastname@example.org . I should have the next HopeNotes out in a few hours… or sometime Wednesday, depending on when the body gives out.
Lis~Read Full Post | Make a Comment ( 5 so far )
I wanted to share this great article about Kelley Hornberger that was in Lancaster Online newspaper. Kelley writes, “”The interview went well & the pictures ‘hopefully’ will come out great! They photographed me with some HopeKeepers magazines, the book Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend as well as my minivan window cling with the rollercoaster. I don’t know how many/which pictures will be used though. Publication may not occur until Sept. 9th but, at least it will get in early so people can still participate. I will email and mail you a copy of the article for your files. Enjoy your day! Kelley Hornberger”
–Update! Read the article “Purpose from Pain Initiative Offers Support for People with Invisible Illnesses” here. Kelley shares, “I’ve now received 2 calls from women who were thankful to hear they aren’t alone & there are resources out there for them! The one woman doesn’t have internet, so I gave her Rest Ministries phone number. I’m also mailing her the last HopeKeepers magazine as well as other Rest Ministries materials I have on hand, and that silver ribbon pin you blessed me with. She was grateful for this stuff as well.” Thanks, Kelley! Awesome article!Read Full Post | Make a Comment ( None so far )
It was an amazing week… because of you! Thanks to each of you who posted a blog, told people you know, handed cards to clerks at the grocery store, left them in waiting rooms, wore your tshirts or carried your tote bags, clipped on an awareness pin, told your pastor about the week, told a friend, emailed a friend or loved on the link to a program you thought s/he would enjoy; thanks to the people who called in during our shows, who got someone to help them figure out how to listen to the shows, who wrote and encouraged us and told us we were making a difference.
WOW! That list could go on and on… and it will soon as I want to share what some of you have told me you did! Stay tuned!
But first I wanted to update you on a few things.
1) I am just about 1/2 done with awarding prizes. Some have shipped today, some tomorrow and the rest throughout next week. Thanks again to all our donors. You can scan the page to see if you’ve won something “so far” here. We are posting first names, initial of last name and city/state to maintain your privacy.
2) Our seminars have had an average of about 500 listeners each so thank you for spreading the word. Remember that you can still share these, forward them on to a friend, and even put the coding up on your own web site. (We’ll have instructions on exactly how to do that soon.) The web site for all the programs is http://www.blogtalkradio.com/invisibleillnessconf As soon as we get the email from itunes we will post here to let you know it’s available in the Apple (R) itunes store as a free podcast download. You can get the WHOLE week on your ipod! What a great way to be inspired while you are bedridden or walking around the block to get some exercise!
3) We had some wonderful guest blogs and they are still coming in. Our hope is that we can continue to post about 1 per week and also keep you in touch with different invisible illness issues in the press, etc. If you read something (like a disturbing Dear Abbey letter) or see a show about handicapped parking, etc. bring it to our attention and we’ll consider writing about it or sharing it with others!
4) It’s been so fun to read the blogs you all have been posting THIS week about Invsible Illness week impacted you. The stories are amazing. Keep sending them or posting your comments here. They all encouarage other people too! I’ll try to get another blog roll up in the next few days if I can. Speaking of which the How To Cope with Pain blog asked what you learned during II Week and I’m the only comment she has received! I know you have emailed me but scoot on over to this blog and post a comment and be sure to read her other stuff too! Wonderful–you’ll want to bookmark it!
5) I am having hand surgery the 24th of Sept. I have x-rays the 18th to decide if I really should do the left hand or if the right hand, which has been bothering me more lately, should be done. My heart says, “The left will be so much easier…” My head says, “Be practical and realistic and do the right.” We’ll see what the surgeon says but I’m sorta freaking out about losing the abilities in my right hand to type easily and work the mouse for a month. Please send up a prayer for easy recovering, less pain and maybe…. perhaps… no joint replacements. So know that though I may be “quiet” the next month, my heart is still here and I may just be telling other people what to type for me!
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What an appropriate theme for National Invisible Chronic Illness Awareness Week, and it has such a personal meaning to me. Let me share that meaning with you. I am a woman who has lead an extraordinary life, I am a Mother, a Grandmother, a photographer, a college professor, a crafter, a writer, a great cook, the site maestro on WeAreCrohns.org and a gardener.
Did I mention that I am medically disabled due to 11 different invisible autoimmune illnesses?
To maintain a better quality of life I had to end my career, go on SSDI and start down another path in my life. Its been eight years now, and I still miss it terribly, but be at have finally come to the conclusion that although I have retired a few hats that I thought I would always be wearing, but have actually replaced those hats with new hats that are so fulfilling to me right now, that I am not even missing the old.
One new hat, (but it could also be classified as old,) is my gardeners hat…the only difference is I have way more garden now to tend than I did when I was well. I tell everyone I know that it keeps me off the streets, but its way, way more than that.
The constant positive metaphors and analogies that come along with gardening and living with long term chronic illness are countless. The simple pleasure of just being out in the garden, feeling the cool wet soil in the spring turn into the warm soil of the fall that bears the fruits of my labor of love during the months between.
But even after the snow falls each year, I have plenty of pictures of my gardens to lovingly place in my garden scrapbooks, to place motivational and inspirational quotes on to send to people that I know need a pick me up, and I have catalogs to look at and plans to move this plant here to there, and then its time to start seeds, and then its time all over again to go back out into nature where my world has no illness, no pain, no sorrow, but only good karma, peace, and such a wonderful sense of well being.
I seem to come to terms with my health issues when I am out in the garden….I do an awful lot of thinking in the garden. I mediate in the garden. I pray in my garden. I do light morning stretches out by my koi pond in the garden. I journal and blog in my garden, and most recently have been making web cam diaries in my garden. I also do a lot of weeding in my garden.
Figuratively speaking and intellectually speaking. In essence, I purge my mind of any bad self talk and sadness I may have about current health issues and come away from my garden with renewed strength, hope and optimism.
They say, you get what you pay for…well, I put countless hours of love and affection into my roses, iris, and lilies and other countless perennials, and I get millions of smiles in my heart, on my face, in my soul and of all the people I then give them to. All this on top of all the aches and pains that come with gardening. They end up being such a small part of it all though.
You see, you don’t have to be healthy to plant and maintain a garden. You can have as few as one plant in your home, to a few small containers on a deck to a few plants in a small garden where you can sit and enjoy them. It’s really about the self satisfaction of caring for something living and watching it flourish and then keeping that wonderful feeling of love and satisfaction stored away deep inside of you to enjoy on a day you are not feeling well.
I think one of my greatest joys is giving people bouquets of cut flowers. I usually have a rose shears in my back pocket and it’s common for me to cut a rose and hand it to someone walking down my sidewalk who tells me how beautiful my garden is. My garden makes me feel beautiful when I am not necessarily feeling that way. My garden makes me proud of the job I have done taking care of all the precious flowers in my garden. They are like children to me.. Each and every one of them…
I literally welcome them in the spring when the buds start peeking out of the still frosty ground. When the tulips and crocus pop up and bloom it gives me a renewed sense of hope and optimism for the future….Its like I am able to recharge my strength, my courage and my will in the spring. As the spring gets a bit warmers I uncover and dig up my 45 rose bushes to see that all of them survived yet another winter to be tipped upright once again so that within a month they will render the beautiful scents and colors that fill me with happiness.
As spring turns into summer, there is not a day that I do not appreciate being alive to enjoy watching all my flowers grow, into something most spectacular! Spring, summer and fall in my gardens provide me with endless hours to photograph the beauty of my gardens. I watch patterns of light in my gardens. I know exactly when the light falls on any particular plant at anytime of the day that presents the best light in which to photograph its beauty.
Then, that beauty in all my photographs I look at over and over again during the winter for inspiration, and I share that inspiration with others. The simple fact that I can grow something so beautiful from a seed into something beautiful that will touch others positively has made me feel whole again. I feel important and viable again. It gives me personal joy, happiness and fulfillment like those same feelings I got from my career. It becomes a full circle; I sew what I reap and reap what I sow.
And I sow the hope and strength I get from my gardens to others as the site maestro on a great website called WeAreCrohns.org. I stumbled across this website shortly after it started last December and I have found my true position in life there. And that is using the 37-year journey I have lived while living with Crohn’s disease, to give hope, inspire and motivate others who are living with the same illness.
The mere fact that I have suffered terribly during that time is not what I share with the members, but I share what I have learned during that time, I share my philosophy that you CAN live a positive and proactive, worthwhile life even though you have a unique set of health challenges. Don’t let your circumstances define you, you have to have the mindset that you can and will live your life to the fullest as you can.
I let people know that it better to go to half a concert, or movie than to not have gone at all, its all a mindset, and requires lots of thinking outside the box…you are only limited by the restriction your mind puts on you, not what your body says you cannot do. I am a firm believer in the words never say never. You just don’t know until you try.
I would rather try to nurse a little seedling back to health even if I knew it wouldn’t make it, because there is always the chance it will thrive. In my garden I have the time to reflect over all the things that have happened in my life and I have been able to find the answers to my questions in that I haven’t suffered in vain, because I have much to share with others that can only bring them hope because its really quite simple, even though I have been ill for almost 4 decades, and I have the capacity to focus on the positive. I have learned from the negative or painful experiences involving my health issues, and then moved on.
Even in the worst of times, we need to muster up enough hope for the future, because in reality, we can’t go back and fix what we have lived through. But, we can be proactive, we can take part in our future good health, and we can do that by creating awareness.
Awareness for Invisible Chronic Illness, and awareness for our own individual medical conditions. The more noise we make, the more proactive we are in getting involved and helping others get through their rough times, not only helps others, but we model behavior that is caring and compassionate to others who may not be aware of our health issues. Treat others as you wish to be treated.
It comes back to the soil, I love digging in, in my garden. We sow what we reap, and we reap what we sow. I like this new garden hat. It suits me just fine.
Be kind to yourself.
National Invisible Chronic Illness Awareness Week is important to me because it is a week for those of us living with Invisible Illness to be motivated by the wonderful selection of speakers, along with it being a week for us to model the type of behavior to those who dont understand about Invisible Illness in the same manner that WE would like to be treated. By providing positive information, awareness and behaviors to others, it paves the way for hope, hope for a cure for what ails us, but hope that we can positively educate other about Invisible Illness.
Marybeth Lonnee says, “I was diagnosed at age 16 in 1971 with Crohn’s. I have had 3 bowel resections, 8 kidney stone surgeries, and have many other health issues including RA, Fibromyalgia, Sleep Apnea, Gastric Reflux, Mennieres Disease, Anyeurisma, Hypothyroidism, RLS, and Ostoearthritis, Depression and panic and anxiety. I was a support group leader for the CCFA back in the early 80′s as well as president of the Minnesota Chapter. I had to go on medical disibility in March of 2000. I am on social security disibility. I have tried to live my life as proactively as possible and am currently writing a book based on my experiences living with long term chronic illness. When I am not writing I can be found out in my garden. I am forever optomistic, even after almost 37 years, that a cause and then a cure will be found.”Read Full Post | Make a Comment ( 5 so far )
Everyone I have ever met with chronic illness has a desperate need to be understood, believed, cared for and cared about. This is especially true when the illness is invisible to everyone else, except for those moments when some physical evidence shows up, like a rash.
Since it is not possible to show everyone the rashes, which have a nasty way of waiting until no one else is around anyway, the only thing left to do is to become your own best friend. I am serious about this.
First, have a list of things you would love for someone to do for you. For example, I wish someone would make me a pot of tea, play some music I love and listen to me, really listen to me. Well, today I am going to be that friend for myself. The tea is ready, Beethoven is pouring out of the speakers, and I am prepared to listen to myself – as a true friend would do. That means I have to be critical in a surgical way, a nurse to myself.
Since listening would give me the giggles, and interrupt Beethoven, I will write my comments to myself and then step in as a friend. For example, I feel that nothing nice has been done for me or has happened to me for a long time. My friend side responds, it is a quote I love but cannot recall who said it, “Really, think of all the things you did NOT want that did not happen to you!
Take a moment to be grateful for that. Then think of all you do have, besides the tea and music. And, if you were honest instead of feeling sorry for yourself, you would think of [someone else - do you have a name of someone YOU know?] who is suffering right this minute and needs tea, music and friendship more than you do. Why don’t you go and see to that person?”
Somehow, the minute you are able to put your mind and heart on the needs of someone else, even if their pain or problem is less than yours, your own pain is reduced. It is as though there is only so much hurt that can enter and you displace some of your own when you feel another’s.
Please try this; it is so simple but it has never failed me. Yes, first see to you: Do what you can to bring yourself a smile, a moment of pleasure, and then invite in that critical friend to remind you that while you may be in hell, you do not have to stay there – that story of the starving people whose hands were secured in front of them so they were unable to reach the food they had been served, the whole table of people described as hell; then one person reaches across and puts food in another’s mouth and the table is now heaven.
National Invisible Chronic Illness Awareness Week is a moment of hope for the ill to better learn how to live with chronic illness.
Leslie Royce is a 72-year-old retired Philadelphian who lives in the center of Philadelphia in spite of MCS. She does this in order to be part of her children’s lives, and in order to be available to those who need help and encouragement. She knows how lucky she is to be alive and therefore the theme of her life is celebrate. Read, write, celebrate, and share is how she survives.Read Full Post | Make a Comment ( 4 so far )
We have tons of people to thank this week! So many of you have blogged about II Week, written about it to others, and overall, have made this week just awesome!
- What a beautiful blog this one is… Reminds us of our scrapbooks. National Invisible Chronic Illness Awareness Week – By Stacey Moore
- National Invisible Chronic Illness Awareness Week
By Joan(Joan) - A Short in the Cord
- Thanks to Liz who posted the schedule at Peace in Chronic Illness
- Thanks to Kerrie at the daily headache for blogging!
- Speaker, Jennifer Saake blogged at her Hannah’s Hope blog about the week and her seminar.
- Diane Standiford blogged about us at
- The Inner Workings blog said, “As someone who has lived with an “invisible” chronic illness for over 23 years, I found the below organization and event a welcome addition to my own circle of support and advocacy.”
- ChristianWriters.com had some nice comments about spreading the word.
- “A Pretty Mess” blog gave some feedback about looking good when not feeling so hot.
- Jeanne’s Endo Blog gave us some nice information about her story and how it relates to II Week.
- The Canary Report posted about II Week. We can’t forget those who live with chemical sensitivities!
- MSC America also encourages those with chemical sensitivities and they posted our press releases – thank you!
- Dust Bunnies and Books blog is written by a homeschooling mom who blogged about NICIAW for us! There should be an award for chronically ill moms who homeschool (just my opinion…) This mom some how found time to write multiple posts on invisible illness, added our blogging badge and even the roller coaster logo! Does she sleep? (Thank you!)
- Sharon at Fibromyalgia: Fitting the Pieces Together blogged about II Week
- Connie at My Chronic Life has done lots to help us and she is also a guest speaker on blogging. Way to use your blog (and your area of expertise) to lend a hand, Connie. Thank you!
- The Blog Herald did a nice article on our efforts to “Blog for Awareness.” He was careful to say our “templates” to let others know almost bordered on spammy. We tried to be careful and make sure you personalized any posts you made… it’s just that we’re so tired, sometimes we need a little help with our writing to get the brain functioning, right?
- Cinder Bridge did a great job of explaining some of the challenges of living with an invisible illness.
- Christine Miserandino posted lots of entries on Invisible Illness Week. We had a great time Monday morning during the first session! Check out her web site at butyoudontlooksick.com
- Christine did us athe big favor of posting the whole flyer about Invisible Illness Week. Thanks, Christine (hope you are feeling “better” – your Twitter said it was a rough day…)
- Sufferer of RSD also posted the flyer! Wow! Thank you hardly covers our appreciation!
- You know how some blogs just look refreshing? We loved this Lemon-Aide: Living with Complex Chronic Illness blog. Nice post, nice feel. Thanks for your help!
- Sue at Learning to Live with CFS posted info and the logo. Thanks, Sue!
- MaryBeth posted a nice blog at the “we are crohn’s” web site
- COPD News of the Day made a nice announcement Monday of “It’s here!”
- Beside Still Waters – The images on this site truly do make you feel at peace. Thank you for your support!
- Special thanks to Angela who posted something about II Week over at Care2
- We’re so thankful for Maija taking the time to write a post at the Disability Advocacy Suite 101
I’ll post more soon! Thank you so much to everyone who is participating in blogging and spreading awareness. Since all our programs are archived, it’s so nice that it doesn’t matter when someone finds out about II Week, we still have the full programs for them to listen to.Read Full Post | Make a Comment ( 7 so far )
I had a brush with my old friend hypochondria recently. But Mark Levine’s recent New York magazine article “Listening to Hypochondria” left me feeling secure that I’m not a hypochondriac, and hopeful for folks who really are. Allow me to explain:
I grew up in a family of hypochondriacs. Without naming names, I’m comfortable saying that family members both close and far experienced rare and incurable illnesses and maladies, sharing all the gorey details and freaking out all us kids at family reunions. You name it, folks were sure they had it: HIV, hemophilia, Legionnaires Disease—totally freaky stuff.
The problem was, as I got older, it was hard to tell if these experiences were real. Certain people were “cured” of certain illnesses that were—and still are—technically and completely incurable. And even though I was told I had “a touch of hemophilia” I lived through multiple bloody falls from bikes and swing sets and stuff, some I didn’t even tell my parents about.
I didn’t want to question my family members; I wanted to believe them, to help and support them. But at times the claims were so out there, it was hard to take them seriously. To complicate matters, they often also had REAL health claims, which needed to be taken seriously. It was really confusing!
Hypochondria…or not…or yes…oh, who knows?
Eventually I learned to tune out a lot of it and hope they knew how to take care of themselves. And when I learned the term “hypochondria” in college, I felt a strong sense of recognition. So THIS was the reason I was so fixated on my body and its every bump and wrinkle; I had absorbed some of my family’s hypochondria myself. I made the decision right then to chill out about my body, and that lasted for a few years until…
…I was diagnosed with fibromyalgia in 1997, after months of mysterious symptoms and a battery of tests, almost all with negative results. I was perplexed, frustrated and scared. Suddenly every cough and rash and pain just might mean something. I started cataloging my symptoms (per my doctors’ orders) and it became an obsession.
Those few years in which I was obsessed with my body were exhausting. When you’re convinced that you MUST have something serious that the docs just haven’t confirmed yet, it’s hard to concentrate on anything else. I was at the doctor every week, and he patiently explained over and over that I was obsessing and I needed to step back and get perspective.
The 24-hour rule
A day at the therapist’s office was a big turning point: She explained that it’s common for people with hard-to-diagnose chronic illnesses (like fibromyalgia, chronic fatigue syndrome, multiple sclerosis and lupus) to become a bit obsessive after a diagnosis. After months (for some people, years) of living with undiagnosed illness and dealing with mysterious symptoms, everything seems to hold hidden meaning. It makes sense, but it’s not healthy.
Slowly she talked me off the ledge and got my mind focused elsewhere. We even developed a 24-hour rule: if a symptom lasted more than 24 hours, THEN I was allowed to call my primary care physician about it. That rule cut my doctor appoints down to almost nothing. Turns out, obsessing over possible diseases was making me feel worse; directing my mind elsewhere allowed me to calm down and help me get real.
So while I learned I’m not really a hypochondriac, I definitely have obsessive tendencies that need to be monitored, especially when I’m feeling really bad physically or emotionally. The 24-hour rule stays in place.
Fall-down-go-boom offers new perspective
It had been a while since I doubted my ability to assess symptoms, and then I fell down some stairs with my bike a couple days ago, banging myself up pretty good. My right hand and arm hurt a lot, and I had x-rays taken because I feared a fracture. (A pal recently fell down and resisted medical care, but once he got it he learned he had a fracture, so he was on my mind.)
When the x-rays came back negative, my old habits returned in full force. Why did I get them in the first place? Was I over-thinking the pain? Was I obsessing and making it worse? Had I wasted money and energy? Was I being a hypochondriac?
Nope, I decided after a few hours of worrying. I was being proactive. I’ve never broken a bone, so I don’t know what that feels like—I only knew it hurt like a mofo, and I wanted to be sure. That doesn’t make me a hypochondriac; it makes me a normal girl after a bike accident.
And as I sat on my porch that afternoon (my wrist on ice), reading Mark’s piece about hypochondria and new research into its origins and potential treatments, I realized I was OK. Sure, I might occasionally obsess about a weird bump on my arm or a new mole, but that’s pretty normal.
And for folks who struggle with hypochondria, there is new hope for treatment using serotonin-reuptake inhibitors and other forms of therapy, which is great news. Now if only I can get some of my family into one of the new research studies…
Jenni Prokopy is the founder and Editrix of ChronicBabe.com. She reaches thousands of women every day with messages of hope – and teach them how to maintain their sense of self despite health-related limitations. She says, “I love helping others and I know I have a commanding message of hope and inspiration to share.”Read Full Post | Make a Comment ( 10 so far )
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