I'm sure all LymeInfo members have missed our regular moderator these past few weeks. Rose had been taking a few weeks off to visit her daughter Amy in Hershey, Pennsylvania. She was spending time with Amy and helping her get settled in a new apartment. Rose was planning to be back at her home in Texas and posting to LymeInfo again before the end of the month.
Unfortunately, I have VERY sad news to report. Rose's husband James has informed me that Rose passed away yesterday, April 18. When Rose's daughter couldn't reach her at her hotel, she called the hotel manager who found her. This is very unexpected and upsetting.
** From James:
"Until I am able to talk with the M.E. in Hershey, I don't have any other info to pass on. Rose was really enjoying her time in Hershey up until last Thursday, when breakthrough pain hit. Sleeping seemed to be the only respite. Both Amy and I kept trying to get her to see a doctor up there, but she wanted to wait until she got back here to DFW to be with our own AngelDoc..
We will be bringing Rose back here, but don't know when, nor when services or internment will happen.
Please bear with me. I know she loved her time with the LymeInfo community list."
** Rose had been suffering from late-stage chronic Lyme disease for many years. She joined on as moderator of LymeInfo in 2002, but had been previously known around the Lyme community for her postings on various Lyme email groups. All who knew her knew she was very warm, kind and dedicated. In joining LymeInfo, she was eager to make sure that the information needs of all Lyme patients were met. We all learned so much as a result of her energy and commitment. Rose was a good friend and will be missed dearly.
More information will be passed along once it is available.
Please keep the family in your thoughts and prayers.
With lotsa love, Cheryl LymeInfo Co-Moderator
Posted by Melanie Reber (Member # 3707) on :
Our Yellow "Rose" of Texas...
My heart is so heavy this morning.
We have lost such a wonderful spirit and valiant presence in losing Rose...one of our own.
My my most sincere and heartfelt condolences, thoughts and prayers go out to her family, the moderators of LymeInfo and the many friends who were touched and blessed by her unending dedication to the Lyme Community.
We so loved you Rose.
May God welcome you home with open arms...and may His arms now blanket and comfort those who will keep your memory alive with love and gratitude.
Melanie
Posted by Cheryl (Member # 75) on :
The following is a post Rose made in 2002 when she joined LymeInfo. I thought it would be nice for us all to see more about her in her own words. Cheryl
*** In Rose's words:
New Co-Moderator Introduction Wed Jul 3, 2002 10:04 am
Dear Lyme Friends,
I'd like to take this opportunity to introduce myself. My name is Karen J. Rose...but my friends all call me ``Rose.'' So, when you see the name ``Rose,'' that would be me!
I was recently asked to become a co-moderator of [email protected] (founded in December 2001) to free up the time and energies of Cheryl, Ellen, and Eva for more pressing needs. I am quite honored to be entrusted with this responsibility, and hope I can live up to their expectations. My skills as a former technical writer and researcher are a bit rusty, but I will do my best to continue keeping members informed of important Lyme issues. The focus of this information-only list will vary, according to the ever-evolving needs of the Lyme community.
For those of you who don't already know me, let me offer a little background explanation. I had never heard of Lyme disease until my ``official'' diagnosis, and subsequent disability, in April 1995. However, my confusing, complex, and well-documented medical history strongly indicates that my Lyme infection occurred in 1958. My husband, James Martin was diagnosed a year later, and is also disabled from chronic, late-stage Lyme. His medical history also points to early-childhood infection.
Since our dual-diagnoses, James and I have dedicated the majority of our time and energy to Lyme research, education, and advocacy, and have been involved with a number of online Lyme support groups. We've also met a lot of wonderful people along the way...too many people whose lives have been devastated by Lyme.
But, in March 2002, a ``mission'' of some sort starting forming in my mind. I didn't have a clear focus, and had not yet analyzed the best course of action, but I felt a very strong inner calling to do ``more.'' I discussed my ideas with a number of people whose opinions I trust and value, and considered the following possibilities:
1) Starting a physical support group locally.
2) Creating an online group targeted specifically to Texas Lyme issues, because there is a huge lack of available information here.
3) Writing a weekly or monthly newsletter.
4) Developing a Lyme website (separate from our personal websites).
So, when I was asked to co-moderate an existing Lyme-information group, I realized that this was an excellent opportunity to make a significant contribution. So, here I am, at your service.
I hope you will join me on this exciting new journey. I'll need some help, some constructive criticism, and a lot of Lymie feedback to continue providing relevant information. Please feel free to email me at [email protected] with your ideas. I'm looking forward to this challenging endeavor, and for the opportunity to play a part in increasing Lyme awareness.
TOIL for Lyme T = Teach tolerance 0 = Overcome ignorance I = Initiate insurance reform L = Labor for Lyme literacy
Posted by Lymetoo (Member # 743) on :
I'm very sorry to hear this!!!! I do remember her postings here.
My heartfelt condolences to her family and to everyone in the Lyme community, who suffers as well when we hear about one of our own leaving this world.
Here is more on Rose, including a picture of her. What a beautiful woman!
You know what? She said she thinks she got lyme disease in 1958. That is around the same time I got it.
Praying for her family....
Posted by treepatrol (Member # 4117) on :
Posted by canbravelyme (Member # 9785) on :
With best wishes to her family; I never "met" Rose, but I felt a little "hello" from her every morning when Lymeinfo would come into my mailbox.
With heartfelt blessings from CBL in Canada.
Posted by map1131 (Member # 2022) on :
Melanie, I kept thinking Rose, Rose and it wasn't coming to me until I read your post and remembered the name Yellow Rose of Texas.
It just weighs so heavy on my heart what this lyme world has done to young lives. I'm about to turn 50, so yes that's young. I will keep praying that some day soon the truth about lyme disease and other vector born illnesses is going to be told.
My sincere sympathy to Rose's family and friends.
Pam
Posted by trueblue (Member # 7348) on :
My condolences... Posted by catalysT (Member # 10786) on :
I had just subscribed to lymeinfo a few days ago. I had not known Rose previously.
Sad news to loose another sufferer of Lyme Disease, especially someone active in the community, who did her part in the spread of information and awareness.
My heart goes out to Rose's family. I'm sure you will be missed & remembered.
Posted by 5dana8 (Member # 7935) on :
I am so very sorry
Praying for some comfort for her family Posted by stella marie (Member # 7216) on :
My heart is also heavy.
Posted by Vanilla (Member # 11155) on :
This is so very sad and I so feel for her family. This must have been heart breaking for the daughter.
Posted by dontlikeliver (Member # 4749) on :
That's so sad and shocking. I'm sorry to hear that.
DLL
Posted by Robin123 (Member # 9197) on :
I am so sorry to read this today. What a shock it must be for her family. I looked at her site -- what a lovely person. I appreciate that she became an activist for everyone.
I would like to suggest that everyone consider doing some activism in her name. I made contact with a large national FM and CFDs site today and will be asking for info to go out to all their centers about Lyme/co's, testing labs/diagnosis, treatments and helpful website contacts.
[ 19. April 2007, 04:45 PM: Message edited by: Robin123 ]
Posted by bettyg (Member # 6147) on :
Thanks for posting her lyme site! Looked at her photo; gorgious woman; and read some of her lyme story.
But most importantly, I signed her GUEST BOOK, and added my comments there for her hubby/daughter, etc.
Rose, we will never forget you: your wisdome, sensitive personality acknowledging other people's feelings, and all the wonderful lyme research you did.
May you rest in peace Rose! NO MORE LYME PAIN or FIBROMYALGIA PAIN!! Posted by Kayda (Member # 10565) on :
I am deeply sorry for such a great loss to her family, friends and the lyme community.
Kayda
Posted by PinchotGail (Member # 5066) on :
This is so very sad. We have lost another Lyme Warrior.........
I never met Mama Rose but I met her beautiful daughter Amy at Lyme Jam a few years ago in Gettysburg.
Amy and James, so sorry for your loss. I wish for you the strength and love of friends and family to comfort you. Rose will never be forgotten for all that she did for others with Lyme.......and Amy, Palmyra is not far from me if you ever need anything!!!
Gail
Gail
Posted by WildCondor (Member # 434) on :
Very sad news... The tears keep coming, I am so sorry to hear about our beloved Rose. Very sudden, indeed. Thank you Cheryl for letting us know. I talked with Amy Rose a few times, and I was touched by how much she wanted to help the Lyme community. I remember meeting her at the Albany hearing years ago, and she had travelled far to make sure justice was being served for her Mom and family and all Lyme patients.
My heart goes out to Rose's family, all good, kind people.
A huge loss for the Lyme community. Prayers to you.
Posted by imanurse (Member # 7022) on :
I am very saddened to read this news. My sincere condolences to her family and friends.
Posted by oxygenbabe (Member # 5831) on :
I am very upset. LymeInfo kept me updated on all news stories about lyme. I didn't know much about Rose. I went to her website. She is indeed beautiful.
Posted by karatelady (Member # 7854) on :
I read her story and saw her picture. A beautiful woman indeed.
So sad and I'm very sorry to her daughter, husband and family.
It's sweet of Lymeinfo and her husband to keep us updated.
Sandy
Posted by CaliforniaLyme (Member # 7136) on :
Very, very sorry to read of it-
Posted by TNJanet (Member # 10031) on :
I am just overwhelmed with sadness to hear of Rose's untimely death. My mind says, "It cannot be." My heart says, "Too much loss." My soul says, "Thank God for Rose and the life she lead."
To Rose's family: There are times when loss is overwhelming and words cannot change anything. In this time of sorrow, look for God's guidance and calm. "Be still, and know that I AM."
May your memories of Rose and her spectacular life bring you comfort in the times ahead.
Janet
Posted by Andie333 (Member # 7370) on :
My heartfelt thoughts to go Rose's family and to all of us who have lost a really wonderful woman.
I was so sorry to hear this!
Andie
Posted by randibear (Member # 11290) on :
I have been gone a couple of days.
OMG, I am sooo sorry. There is nothing I can say except that I am sorry for your loss.....
So many lives.........
Posted by sometimesdilly (Member # 9982) on :
Every death too early is painful, the loss of yet another life to the ravages of lyme in particular cuts close and sharp.
Losing Rose leaves a silence behind, one that seems especially deep because of the voice she gave so unselfishlessly to the great needs of our lyme community.
I agree whole-heartedly with the suggestion that the very best way to honor Rose is to go out and engage in some activism.
sending prayers for peace to her special family-
julie
Posted by shazdancer (Member # 1436) on :
Very sad news, and a big loss. My sincerest sympathies to you, Cheryl and Condor, and to all her friends and family.
Posted by Boomerang (Member # 7979) on :
I am so shocked and saddened to read this. My heartfelt prayers go out to Rose's family.
God Bless.
Posted by Tincup (Member # 5829) on :
I'm sorry.
Posted by Tincup (Member # 5829) on :
For those who missed the announcement.. up.
Posted by Lymetoo (Member # 743) on :
Posted by Cheryl (Member # 75) on :
The Rose Still Grows Beyond The Wall By A.L. Frink
Near a shady wall a rose once grew, Budded and blossomed in God's free light: Watered and fed by morning dew, Shedding its sweetness day and night.
As it grew and blossomed fair and tall, Slowly rising to loftier height, It came to a crevice in the wall, Through which there shone a beam of light.
Onward it crept with added strength With never a thought of fear or pride, It followed the light through the crevice length, And unfolded itself on the other side.
The light, the dew, the broadening view Were found the same as they were before. And it lost itself in beauties new. Breathing its fragrance more and more.
Shall claim of death cause us to grieve, And make our courage faint or fall? Nay, let us faith and hope receive, The rose still grows beyond the wall.
Scattering fragrance far and wide, Just as it did in days of yore. Just as it did on the other side, Just as it will forevermore.
Posted by kam (Member # 3410) on :
Posted on her web site. I assume family and friends will be able to access it.
Posted by lou (Member # 81) on :
Here is an article she wrote about her own lyme and insurance problems several years ago. Printed in a lyme patient newsletter.
A Lyme patient's experience with her health insurer
By Karen Rose
[Background information is provided first to put her story in context. Ed.]
Congress enacted ERISA (the Employee Retirement Income Security Act) in 1974 to protect the interests of employees and their dependents with regard to their pension and health plans. Since that time, however, the health care system has changed greatly-moving from fee-for-service toward managed care. Cost containment measures have resulted in denial of treatment in some cases.
The provisions of ERISA cover most private sector employee benefit plans--more than 125 million Americans are enrolled. ERISA preempts state law. This means that the state insurance commissioner cannot help when treatment is denied. Lawsuits typically bounce back and forth between federal and state courts as the degree of preemption is argued.
If patients do manage to win cases, as ERISA enrollees they can only recover the value of the benefit denied, not punitive damages. Legal representation for financially distressed patients is difficult to obtain: lawyers will not take these cases on a contingency basis. And a defaulting company has no incentive to change its ways.
Courts have been calling on Congress to close the ERISA loophole, as an unintended situation not foreseen when the legislation was passed. The versions of a patient's bill of rights being proposed by various factions in Congress treat this problem differently.
One proposes to close the loophole, to ensure that managed care organizations are held accountable for negligence. If the federal preemption is removed, states can adopt their own remedies. Other versions of the bill would not do this but would keep the current unsatisfactory status quo. Naturally, the managed care organizations do not want the loophole closed.
So, during the continuing debates in Congress over patients' rights, an important element to watch and actively support is the elimination of the federal preemption for ERISA-covered plans or provision in federal law for lawsuits that include punitive damages.
Rose's Story
I am a resident of Euless, Texas, a technical writer with 20 years of experience, who became totally disabled in 1995 because of Lyme disease. My case was extreme--it was diagnosed at a very late stage, with significant and permanent damage occurring before diagnosis and treatment. Although eligible for SSDI, I endured nine rounds of denials before winning my case in 1997. The administrative law judge stated that it should have been granted at the first application.
I had no idea how drastically my life would change after my LD diagnosis. I expected to be treated, cured, and back at work in no time. Instead, my world came to a sudden end. I was about to enter a strange new world called ERISA
I have worked in many health care arenas as a career consultant, but ERISA was an unknown entity. I was unprepared for the political, bureaucratic nightmare that I encountered as I sought healing. I never dreamed that I would have to forge a new "career" as patient advocate, claims auditor, medical researcher, and political activist.
This is not my story alone. My husband, James, was dignosed with LD in an early, treatable stage in January 1996. He has suffered a needless disability because of the egregious actions of his ERISA plan.
My insurance coverage from my former employer (and the follow-up COBRA extension) was adequate, though out-of-pocket costs were high. LabCorp provided my health benefits. They were the primary payor until the COBRA extension elapsed and my husband's insurance became primary. The only major treatment denials I received were for the 28-day, lifetime limitation on IV antibiotics.
However, they tried every deceptive trick to deny my eligibility for COBRA benefits. If I had not been aware of the laws governing COBRA, I might have accepted their authoritative-sounding lies. Knowing otherwise, I fought back.
Because of my disability I was eligible for an additional 10 months (instead of the usual 18 months) of COBRA--the federally mandated extension of health insurance coverage for those who leave the employer sponsoring their insurance.
In January 1998, LabCorp switched to Aetna for claims processing. Aetna held up payments and asked me to provide Explanations of Benefits (EOBs) from Medicare. People assume Medicare is always primary, but it isn't when you receive Medicare as a result of disability and you are under 65.1 told Aetna that Medicare was my tertiary payor, faxed them a copy of the denied claims, and was promised that my claims would be reprocessed and paid. To date, I have received no compensation for claims from January 1, 1998-May 31, 1998, when my COBRA expired.
The biggest problem came when my husband's insurance became my primary carrier. His employer had elected to be self-insured under ERISA. Private businesses sponsoring their own health plans collect and invest the premiums from the employees. Then a third party is chosen to administer the plan. An employer-sponsored plan can write its own policies and procedures, and has an economic incentive to keep costs down.
Here's what happened to James and me with an ERISA-type health insurance plan. It is a complicated, nightmarish story because we were both sick, with insurance from two different companies, and we experienced a change in the claims processor mid-stream. There were also, as described, COBRA extensions difficulties, disability laws to understand, and a hierarchy of primary, secondary, and tertiary payers. If it seems difficult to understand, that's because it is. Imagine being sick and trying to deal with this. We are and we did and many others are in a similar situation.
James' benefits are provided through Metromedia Restaurant Group (MRG), parent company of Steak n' Ale, Bennigans, Bonanza, and other restaurant chains. In April 1995, our problems with First Health (FH)--the company selected as the managed care organization--began immediately, and have escalated dramatically since then.
My initial claims were denied for more than 9 months, pending pre-existing information from numerous providers. The requested information was supplied, yet the denials kept coming. I sought assistance from MRG and was promised that the situation would be resolved.
On February 1, 1996,1 received a letter from FH stating that this information was never required in the first place since FH was secondary payor. All claims would be reprocessed and released. The majority of claims were released and paid. However, 25% of these claims (totaling over $17,000) are still outstanding. I have spent the last 3 years trying to get action on these claims. I have even provided detailed spreadsheets for each of the unpaid claims.
The real "fun" began with James' diagnosis. Pre-existing information was requested for the previous 3 years. This information was unavailable for various reasons. Claims totaling over $11,000 were being denied because of the lack of pre-existing information. This problem took 3 years to resolve.
In January 1997, James' condition worsened. He was put on intramuscular (IM) Rocephin. His claims for treatment were denied with the notation - "Denied per professional review." We asked the benefits administrator for a detailed explanation, but received no answer for over a year.
In January 1998, James began experiencing severe psychiatric and neurological complications. We asked for more aggressive treatment authorization, and submitted a second opinion by another highly respected Lyme specialist. Rather than approve these treatments, his employer began an aggressive campaign to terminate his employment based on poor performance and unsatisfactory interpersonal skills.
A conspiracy was beginning to unfold. They had been very supportive of us during the first year of my illness. James' boss even came to my house to pray. James held a very prominent position at the corporate level, always received the highest marks on every evaluation, and was always considered an indispensable employee and an asset to the company. Now he was an obvious financial liability because of our LD diagnosis.
James had advised MRG of the telltale signs of disease progression and asked for immediate feedback. He explained that these signs indicated the need for more aggressive treatment. He was showing all the signs, yet he was being denied the treatment that would improve his condition. MRG kept a log for 6 months then put him on probation and notified him that he would be terminated if his "performance" did not improve.
In June 1998, James was hospitalized. After inadequate therapy he was released to return to work. Two weeks later, James collapsed upon arrival at work and couldn't even get out of his truck for 20 minutes. He could hardly walk, yet MRG sent him home (a 40-mile drive with a stick shift). That was his last day at work.
Further testing showed that infection had penetrated the optic nerve, and left him with hand tremors, spastic gait, and a condition resembling multiple sclerosis. We pushed for aggressive treatment again. Instead, the managed care organization insisted on reviewing all previous claims denials, which took 7 months. This delay tactic effectively used up all of his short-term disability and ensured his termination.
We endured a host of ridiculous denials. Since June 1, 1998, when FH became my primary payor, none of my claims for Lyme treatment have been paid and James is still being denied treatment. FH began requesting copies of all my laboratory tests and reports, a copy of my history and physical, certificate of medical necessity, including diagnosis, estimated length of treatment, date of first visit, total number of visits to date, and a copy of all medical records.
Never mind that they had been paying for my treatments since April 1995. My doctor complied and sent the records return-receipt requested. We have a copy of the signed receipt; yet they still say they don't have the records, please send them again. We did, with the same result.
We're now into six figures of claims denials, and no one is being held accountable.
I'm convinced most employers self-insure to hold down costs. However, the unethical employers like ours have no incentive to do the right thing. We have spent 4 years providing peer-reviewed medical literature proving that the consultant's opinions are grossly ignorant and amount to medical malpractice.
If you are covered by an ERISA plan, you must become an informed consumer and activist to protect your rights. Our current form of health care under ERISA is nothing short of fraud. We are paying for promised benefits that we most likely will never see. Review each claim as soon as you receive it. If the claim contains fraudulent denials, contact your plan administrator at your place of employment. You will find the name listed in the back of your benefits handbook. Be prepared to fight aggressively and document everything. Your complaints must be put in writing and faxed or sent by certified mail.
For all disputed claims, list the policy number, the name of the policyholder, date of claim, claim number, amount of claim, denial code number, and reason for denial (if any). If there is no explanation of the denial, demand one.
This is your right under ERISA. State the reason you feel these claims were erroneously denied and provide peer-reviewed documentation to support your rebuttal.
You might have to repeat these procedures many times, but DO NOT give up. They know you are sick, they know you are tired, and they are counting on you to become discouraged and give up. They hope your doctor will refuse to see you because you have become a "problem patient." They are protecting their profit margins and have nothing to lose and everything to gain by denying your claims. They even give bonus incentives to the claims processors that save them the most money each year.
I have learned many ways of fighting back but in the end, it is the flaws in the ERISA law that are ultimately responsible for our inability to get redress from our managed care organization. Only when these organizations can be held accountable will our situation improve. If the federal preemption is removed, our up-to-date files, showing that all procedures have been followed according to the contract, can provide the basis for a lawsuit under Texas state law.
Posted by FightFireWithWater (Member # 5781) on :
Such sad and disquieting news. Rose and her family have done so much for Lyme patients. Condolences to all of those whose lives she touched.
Posted by Dayle Ann (Member # 1657) on :
Stunned: I have been offline for the last week, catching up on email, and the announcement just jumped out at me on LymeInfo. Rose was one of the sweetest people I have had the pleasure of corresponding with. It is amazing what she was able to accomplish, and with such grace.
Sad, sad, sad. I am so sorry that her family is having to cope with such an unexpected loss.
Rose, thank you for your support and encouragement, and for letting us know you through your generousity.
Dayle Ann Vermont Lyme Network
Posted by ByronSBell 2007 (Member # 11496) on :
Did the detemine the cause of death?
Posted by aiden424 (Member # 7633) on :
What very sad news. My sincere condolences.
Kathy
Posted by Beverly (Member # 1271) on :
I'm so sorry. My condolences to all.
Posted by charlie (Member # 25) on :
Sorry to hear it...I remember Rose from the 'old flash' days and Lovey's site. I didn't know her but I know she was loved by the lyme community.
any idea what the cause was? other than the obvious underlying one?
Condolences to her family
Charlie
Posted by cbb (Member # 788) on :
The Lyme community was truly blessed to have such a dedicated, wonderful person who helped so many!!
She will be missed and she will be remembered!!
Posted by heiwalove (Member # 6467) on :
so very sorry to hear this. Posted by bettyg (Member # 6147) on :
rose did an outstanding job writing her story; thanks lou for posting this! Posted by Cheryl (Member # 75) on :
Posted by wrotek (Member # 5354) on :
Disaster, i wish to know what was the direct cause of death.
Posted by Cheryl (Member # 75) on :
Karen Johnson "Rose" Rose, 59, a loving wife, mother, sister and grandmother, passed away Wednesday, April 18, 2007.
Graveside service: 11 a.m. Monday in Dallas-Fort Worth National Cemetery. Visitation: 5 to 7 p.m. Sunday at the funeral home.
Memorials: In lieu of flowers, donations may be made to the Lyme Disease Association, P.O. Box 332, Tolland, Conn. 06084-0332.
Survivors: Husband, James Martin; son, Marc Heileman; daughters, Shelli Sanderson and Amy Rose; two grandchildren; and sister, Janice Simon. Published in the Star-Telegram on 4/29/2007.
The address given for donations is for the Lyme Disease Foundation (CT) but the name for the organization is the Lyme Disease Association (NJ). Think this has gotten mixed up.
Posted by Cheryl (Member # 75) on :
Posted by marc.heileman (Member # 11788) on :
I am overwhelmed by the number of posts and the sentiments expressed on this site about my Mother, Rose. Thank you all for showing such honor to her.
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Frown]](frown.gif)
Did the detemine the cause of death?
