Chronic illness Pain Support

ICRS Day 2

Mom and I had breakfast downstairs and got all my boxes that had been shipped here delivered to our room. We stuffed 50 of the 150 bags of "Beyond Casseroles" books with magazines, a snack bar, etc. We needed food so ventured out.

We caught a trolley that goes up and down International Drive. By the time we figured out out where we were, we had gone past the restaurants and instead were down by the outlet malls and Sea World. We saw the Sea World water park (looks fun!) and joked about how we could just run into see Shamu for a few minutes since we have passes from San Diego's Sea world. It's kinds of like Santa... how can Shamu be in two places at once?

We ended up stuck on the trolley for too long, but got to see the neighborhood, the convention center, where we will be, etc. And it cost me $1 and my mom (senior rate, sorry mom) $.25! What a bargain.

We finally got off a block from our hotel and grabbed a sandwich. Made it back to the other hotel for the women's writers conference  (AWSA).

Since this is my 3rd year, it's fun to see people I know now, and it was a great feeling to get to share it with my mom.

Carol Kent shared a message that had us all in both giggles and tears. Truly a gifted speaker, because she shares her message so seamlessly. Everyone (about 80 people) got 60 seconds to share about their ministry, book, etc.

Like I'd told my mom, it's an amazing group of women --and nearly every ministry comes from some sort of pain.

It's late and I have a wake up call at 6:30. Mom is in bed snoring. I still need to lather on some Voltarin cream on the shoulders (new and works GREAT Rx if you are wondering).

I'm honored to be here among such amazing people... but also honored that you give me the gift of representing all of you who live with chronic illness or pain. With every book of "Beyond Casseroles" people pick up, I hope someday you will feel the trickle down impact of someone who reaches out to you.

Checked in with the guysl Hubby is still at work. Josh said he missed me. He gave me a bit of a lecture about accidentally forgetting to give them my car keys and they thought they were locked out to the house, until they got the garage door to open (which had been sticking the day before...) Josh said, "it wasn't funny!" When I said, "Goodnight my little prince," he said he wasn't a prince, but a boy. I said, "goodnight my little boy." and he said, "No... call me a boy prince." He blew kisses. Pretty good coversation considering America's Funniest Home Videos was on TV

PS: Just remembered, on the plane I read a wonderful article in the new issue of Ladies Home Journal Magazine about Robin Roberts and Diane Sawyer-- about their friendship, especially during Robin's battle with breast cancer. It even has some tips about reaching out to friends with illness. If any of you are so inclined to read it, take an extra moment to write the editor and thank them for representing this subject and doing it so well!

Love you, thank you for your continued prayers. I am sored, exhausted, but taking extra prednisone and getting by on adrenaline too.

Lisa

ICRS Day 1

My mom and I arrived safely to Orlando from San Diego. Joshua is home with Grandpa since Daddy is working overtime. We were very blessed. Despite both planes (changed in Houston) being quite full, we got a seat in between us both times. A blessing for my shoulders! I requested a "cart" or 2 wheelchairs since they said the gates in Houston were a "ways." We got off the plane, jumped on the cart, it SPED through the airport about a mile and then we were the last ones onto the plane. We would have never been able to walk it, especially in time to catch the plane.

I forgot how relaxing a plane ride can be without a child and all of their "stuff!"

We arrived at 12:01.. Got a taxi to the hotel by 1. The gentleman who checked us in was very nice, but we were given a room that was already occupied. And we tried to get into it at 1:20 a.m.! At last we unpacked a bit, put my Cuddle Ewe on the bed and went to sleep.

Orlando is hot and balmly and it just hit me that I'm in the "funnest place on earth" and won't be seeing much. Josh said to "bring him back a surprise" but I can't bring him Disneyland stuff, right? He'll wonder why I went without him. 

We checked in with all the guys. They are all doing great.

Acupuncture? Do you have an opinion?

Dear Ms. Copen:

I was so excited to see my first copy of your excellent magazine HopeKeepers.  I head up congregational care ministry in a large church so was thrilled to see this great resource to help believers cope with illness.  I also oversee adult education and frequently teach on the dangers of cults, new age teachings and other popular ideas that can endanger the believer's spirit. 

 

So when I saw the cover article Is Acupuncture Safe for My Spirit I was thrilled that your magazine would warn people about the dangers this practice can present to the believer. 

Instead, I was disappointed that the article fully supported the practice based on the idea that it works, and can offer relief.  Any search on the internet, putting in the words acupuncture and Christians will pull up plenty of warnings that would make me question its safety for "my spirit."  I'd have liked a more balanced article, warning of the innate nature of the practice that suggests non-biblical ideas about "life energy" (really Chinese religious beliefs based on Taoism - - yin and yang).  That would have been a truer response to the question of whether it's "safe for my spirit."

Thanks for all the help you provide.  I look forward to getting to know your magazine better,

Pastor Bill Sy

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Pastor Sy,

Thank you for taking the time to write. I think it could have been a 25 page article on acupuncture and still not fully provided all of the info. We tried our best to quote some respected Christian organizations and yet also understand that most people will try ANYTHING to get rid of pain. It's safer to warn them not to try anything and to always think about it and pray about it and consult respected pastors and such. I've done articles on the past on Yoga (and is there really such a thing as Christian yoga?) and Bible "cures."

I myself tried acupuncture a couple of times about 15 years ago when first diagnosed and didn't see a significant change. But I would consider it again if it could help me delay a surgery or such. And yet, I think we need to be aware of warning signs because spirits ARE in these places. At the same time, the evil one is everywhere and so we need to use the same discretion with alternative treatments as we would anything.

We tried to reach out the average person who may have been considering acupuncture, and may even truly be helped by it, but with a Christian perspective. I'm sorry we didn't fulfill all we could have, but thank you for your grace.

I know some of our articles will disappoint, but it's nice to have a forum where these topics can actually be addressed, even when controversial. Although some Christian magazines tackle topics like acupuncture, etc. they don't always understand the extreme depression and even suicidal thoughts that enter the minds of those with chronic illness - - who are willing to try anything to get rid of the pain. With that in mind, we don't say "avoid everything" but rather "use discernment, prayer and look at what organizations like the Christian Medical Society have to say about it."

I know other people likely had the same thoughts as you. I'd like to ask permission to reprint your questions and my answer on my blog and see if we can address any other concerns, ideas, etc. I can remove or keep your name. Just let me know.

Blessings and thanks - (really! It's so nice to have someone care enough to write!)

Lisa Copen

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Hi Lisa,

Thanks for your quick response, I didn't expect one!  You are gracious.  Yes, it's fine to use my name and letter for the magazine or blog.  I still feel strongly about the subject, have heard of a number of folks who innocently got entrapped by things like this, and started experiencing lack of spiritual desire for the Lord, the word, etc.

 

Here's one example of a nonchristian warning about possible dangers:

Reality of Chi

I have been a practioner of the martial arts for several years, and that also includes spontaneous Chi Kung. The Chi they utilize is not a harmonious, benevolent, all prevailing, invisible energy/force which flows binds and permeates throughout the Universe, but rather a sentient life form unto themselves (nor are they discarnate spirits of the dead as is commonly believed in the west) which religions around the world and communities & civilizations throughout history have commonly termed Spirits, Jinns or Demons. Many people around the world have been severely mentally affected to their detriment through the study of such systems which often involve (as will be examined here on in) clearly defined movements/forms or involuntary actions. Once the jinn's enter the host through the relevant nerve, pressure or acupuncture points that flow in channels/meridians, they then inhabit the host and exercise great influence.   At the latter point the only means of redress then becomes undergoing a religious Islamic Exorcism. I am speaking from my own experiences with this phenomenon and not from hear say. I would like to publicize the dangers as much as possible and expose its reality.  http://www.dangerofchi.org

Not that it's gonna happen to everyone, but for me that would make it "unsafe" for the spirit.  At the same time, Lisa, you have helped me to realize how desperate people are when they are in extreme pain.  I'd be interested in the former article you have published on yoga.

May the Lord continue to use you to bring his healing love to others!

Bill 

Video Games May Soon Be Part of Your Physical Therapy

Games for Health recently had their national conference and they had presentations on the many ways  that video games will become more and more a part of rehab and therapy efforts. For example, in a Games for Health conference highlight, a version of the popular video game Guitar Hero was unveiled that is designed to aid arm amputee rehabilitation.

Red Hill Studios presented its findings about the use of PDWii to aid balance and mobility in Parkinson’s patients. PDwii is currently being developed by Red Hill Studios and the UCSF School of Nursing, with funding by the NIH.

They say that quantifiable results are being used to track patient progress and are being integrated into the patient's overall regime.

Results will be used to benefit further innovations in the field of games for health.

For younger patients, there is Ditto, a "multi-modal distraction device" designed to control pain and stress among patients undergoing burn and orthopedic medical procedures.

Cuddle Ewe Bedding Prices Rising After Mother's Day

I wanted to let you know, the Cuddle Ewe mattress tops are going to raise their prices after Mother's Day. I've had one of these on my bed for years and it's made all the difference in my quality of sleep--enough so that a couple years ago I bought the travel version too so I can now actally sleep while on vacation.

You can purchase them through Amazon here and then Rest Ministries gets a percentage of the sale price too.  Someone recently emailed me to ask a few more details and I responded below and thought it would be worth sharing the "details" with you too!

So it may be something to consider using part of your stiumulus check from the government for. Anything that makes me sleep better impacts my whole quality of life.

I was excited to read about the "cuddle ewe" bed cover that you sleep on and then you gave a website to buy it. I have had terrific pain in my bones from laying on most any bed. This sounds like a great addition to the bed that would help my bones(especially hips) not hurt as bad. Can you tell me.....is it made of feathers or is it synthetic/polyester or the like???? I slept on something like it at a Marriott Hotel last year and wanted one so badly. They only sold the feather ones and I have allergies to feathers. Please let me know, if you have a minute. Thanks so much! (I LOVE href="http://www.restministries.org/hopenotes/mostrecent.htm">HopeNotes!!!) Nancy in Kansas

Nancy I know it’s not feathers… details are here. http://www.cuddleewe.com/

I know what you mean about the hotels! They are getting better. I love Marriott’s beds, but even after thinking their extra padding was fine at I had my husband get up and put my bed on. Now, airlines are charging $25 or so extra for the 2^nd luggage! I may just have to pay it. It’s so worth it to sleep and makes any bed into “my bed.” I am like the princess and the pea. My husband likes it too though so we have it on the whole bed.

The king was $300+ and I never would have taken the risk and bought it (though I think they have a trial period) but my uncle had read about it (who reads about EVERYTHING alternative) but he gave my mom some money and they chipped in and had I known I would have got it before then. I’ve had it about 10 years I think and it’s still great. Just flip it and turn it now and then. I could give them an amazing testimonial. Would love to see them advertise in our magazine

Anyway, I couldn’t say enough about it except it makes any bed sleepable for me and that’s a gift. Even at my parents, they have a HARD extra bed and they put a foam thing on when I visit and then I put my CE on. I used to buy 2 foam things everytime we traveled just to try to sleep.

It kind of feels like a feather bed. I have RA and FM and my shoulders really need replaced so it helps with that. And I’m one of those who sometimes actually wonder if thumbtacks are in my bed with the trigger points and it helps with that too.

I see their web site does say, "If it doesn’t meet your needs, simply return the undamaged Underquilt within 90 days and Cuddle Ewe™ will promptly refund your money (excluding original shipping and handling).” So that’s cool! Hope this helps!

"Desperate Housewives" and Handicapped Parking

I never thought I would have a reason to blog about the TV show Desperate Housewives, but while watching this recently (you caught me!) I thought this episode of Gabby envying... and then using... a handicapped spot a bit enlightening.

Later on in the episode she convinces her blind husband to go out for a fun afternoon with her. Only she makes him wait in the car while she parks in all of the handicapped spots to run her errands in high heels.

Sound unrealistic? I didn't think so. In fact, this this was mentioned in my book Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.

#39 is:   If your friend has a disabled parking placard and you are driving, allow her to tell you where she wants to park. If she’s feeling particularly good that day, she may not want to park in the “blue space.” Don’t be disappointed that you’ll have to walk farther.

#60 is:Never invite her to go Christmas shopping with you just so you can use her disabled parking placard.

Thumbs up to NBC and the writers for calling attention to the fact that these spots shouldn't be abused and even clarifying that a wheelchair isn't a requirement for having a placard (see the conversation in the first video below)

102 great online resources you can tap into on chronic illness

102 great chronic illness resources

Here is a wonderful list that the blogger over at Chronic Health Blog put together.

We're excited to be mentioned a few times too!

18.  Video:  Rest Ministries Chronic Illness.  Dealing with chronic illness through faith

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

43.  Eight Choices You Must Make to Live Successfully With Chronic Illness.  We all seek validation for our chronic illness, but our attitude about how we live with it, even when we don’t find that validation from others, is vital in how we succeed. It’s all about choice.

48. 6 Reasons the Chronically Ill Should Shun Making Resolutions. For most people, going through the steps of setting goals is an expectation of themselves. For those of us who live with chronic illness or chronic pain, however, it can be frustrating and intimidating.

51.  Learning to be Assertive Despite the Fatigue of Illness. Has assertiveness gotten a bad rap, however, among the chronically ill? Is it assumed that we won’t have the energy or stamina to fight all of the battles that we will face?

Arthritis Today Magazine is a Good Find

Hi, Friends,

This is just to let you know that I came across Arthritis Today on sale at one of my favorite magazine deal web sites. And if you order through this link, Rest Ministries will even get 12% of the $4.69 SUBSCRIPTION price. That's right... it's just $4.69 for 6 issues.

I've been a subscriber of this magazine for about 15 years, ever since I was diagnosed with rheumatoid arthritis in 1993. And it's progressively gotten better and better. I save every issue and it definately targets every age range!

So go to Best Deal Magazines and then scroll down until you see $4.69 subscriptions and you'll spot it there.

And in case you're wondering... there are loads of great magazines at this web site... As well as dozens of other stores through a "mall" we use called Shop For Charity Day. Whenever you order something from that web site, Rest Ministries gets a percentage. And trust me, they have sooo many stores. A sampling is below. Just click on this link and you will automatically be signed in to help support Rest Ministries with any of the purchases (not just those square ads, but from any of the stores on the left side too.) Thanks for your help!

Lisa

See what stores are listed? Amazing, huh?

Best Deal Magazines
Clipart.com
Discover card
Diabetes store
Dollar Rent a Car
Dr. Leonard's Catalog (lots of those health products)
Eddie Bauer Outlet
Entertainment Book
Family Christian Stores
Golf Outlets
H & R Block (getting taxes done?)
Home Depot
Hooked on Phonics
Joanne (Fabrics/Crafts)
Just My Size
KB Toys
Kohl's
Landcombe
Land's End
Land Bryant
Montgomery Ward
Netflix (movies)
OfficeMax
OrangeGlo
Oriental Trading Company
Overstock.com
PetCo
Prescriptions.com
Relax the Back
Restaurant.com
Shoes.com
South Beach Diet
Stamps.com
Starbucks
Target
Tracfone
Tower Records
Tupperware
USA Today
Vitacost
WebPhone
Yahoo! Small Biz
Yahoo! Personals
Zales
Zone Diet

Patient Acronmys About Doctors - a laugh

I saw this post and it gave me a laugh. I think you will still be able to relate to it! I can think of plenty of them myself. How about DTOSTO but YNTLW (Don't take off shoes to weight but you need to lose weight!)

Lisa

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C.H.R.O.N.I.C illness
by John Appleby

If doctors can use coded abbreviations to be rude about their patients, surely patients can do the same to doctors

>> read the full article here

That doctors use coded acronyms in patients' notes to convey secret messages to colleagues (and also, perhaps, to vent frustration - with patients, with themselves and with the limits of medicine) is no surprise. The sheer bloody rudeness and dead-black humour may shock some, but we have all seen enough episodes of M*A*S*H, Green Wing, ER, Scrubs, Cardiac Arrest and Angels to know that nurses are not always, er, angels or doctors gold-plated gods.

It may be news to the medical profession, but of course two can play at this game. Next time you're waiting in your GP's surgery take a look around at any graffiti - little words scrawled by patients on the armrest of your chair or a public health poster featuring Colin Carrot. These are messages and warnings patients are passing on to others.

Like signs left on gateposts warning door to door salesmen and beggars of the likely reception or generosity of the occupant, COWWOW (Can't Open Weekends, Won't Open Weekends); TOTSIE (Too Overpaid To Stay Open In Evening), convey previous patients' warnings and frustrations.

The New York Times Causes Outrage About Fibromyalgia Skepticism

The NY Times Fibromyalgia Article: Reviewing the Controversy

A few weeks ago The New York Times published an article I suspect they didn't realize would be quite so controversial, but they took on the slant that perhaps fibromyalgia wasn't a real disease and the new medication that was recently approved for it was just another chance for the drug companies to make money. I've been flaring badly and trying to just keep up with life, so despite my outrage, I didn't have the energy to blog about it. Thankfully, Will Rowe, Executive Director of the American Pain Foundation (http://www.painfoundation.org/), wrote a wonderful follow up article today. He sums of the situation well and if you haven't heard of this situation that got the bloggers all responding to the NYTimes, now you will be "in the know."

Personally I have not tried the drug for FM; if I can control my rheumatoid arthritis the fibromyalgia seems to be the secondary illness. But I do have a friend who truly thought the pain from fibromyalgia was causing life to be too hard to continue here on this earth. And this medication has nearly healed him. In my opinion, that's all that matters.

Lisa

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by  Will Rowe
Monday, February 4, 2008; Executive Director - APF - Caregiver

The New York Times stirred up some old controversies recently with their article on fibromyalgia called "Drug Approved. Is Disease Real?" The author quoted two sides of an argument, one saying that fibromyalgia is a real condition that has a real diagnosis and real treatments. The other side saying in essence that the disease is not real, the pain is not real, and that sufferers of the so-called disease "live under a cloud... the more they seem to be around the medical establishment, the sicker they get." That side also implied that the pharmaceutical industry, Pfizer in particular, was again just creating a fictitious disease so that it could sell more drugs.

What a mess. Unfortunately, it is indicative of what is out there in the practicing medical establishment. The root of the controversy, in my opinion, has two branches: the first is the deeply embedded complex belief and bias in the medical community that since pain cannot be objectively or materially measured or witnessed, or connected to some observable tissue damage, it is somehow a fabrication of an unstable mind. The second branch of the bias comes from a strong skepticism about some practices of the pharmaceutical companies, namely the practice of creating a diagnosis through intense marketing in order to create a demand for their products.

The bottom line, which comes from the patient's perspective, and can only come from the patient's perspective, is that the pain of fibromyalgia is real. To dismiss it or not treat it because you are uncertain of what label to use is callous and immoral. There are treatments that work. And when you have a medicine that has proven to reduce the pain by 50% in 30% of the sufferers, then you have an ethical obligation to inform the patient of the option, inform the patient of the possible risks and possible benefits and prescribe the medicine for the informed patient. Bottom line, it is unethical to allow a patient to experience pain when there are options to treat that pain