News Her pain, his ache
For a while, Tommy Varillas couldn't understand his wife's misery. Now he knows.
By Rodney Thrash, Times Staff Writer
Published August 28, 2007
|
Tommy Varillas sits on his bed. Resting on the pillow is a small framed photo of his wife Lisa Varillas. He sleeps with it under his pillow. Lisa Varillas had fibromyalgia, a condition that doctors often mistake for depression because the people affected look healthy.
|
 |
|
[Jim Damaske | Times]
|
|
ADVERTISEMENT
 |
|
[Jim Damaske | Times]
Memories of Tommy Varillas's wife Lisa are arranged on his dresser. For two of those years, her husband Tommy would say, It's all in your head, because that's what doctors were telling him.
|
 |
|
[Jim Damaske | Times]
Lisa Varillas's ashes are in this box which rests on her husband Tommy's dresser. Ontop of the box is a photo of the couple in Hawaii, her wedding band and an id that had Lisa's photo on it when her hair was long. Tommy said she liked that photo of herself.
|
|
OLDSMAR - For 10 years, pain ravaged Lisa Varillas. For two of those years, her husband, Tommy, would say, "It's all in your head." Lisa had fibromyalgia, a condition that doctors often mistake for depression because the people affected look healthy. Recently Tommy held a picture of his wife. The date on the back - 5/22/00 - was three years after the pain began. In the picture, Lisa floats in a baptismal pool. "The best day of her life," he said. She hoists her fists in the air, like a V. Her smile is wide. "This," Tommy said, "does not look like pain."
* * *
There were things the picture didn't capture. How simple things - hugging, sitting, standing, cooking, cleaning, wearing bras and closed-toe shoes - hurt. How, at 53, Lisa wore diapers.
How she couldn't sleep more than four hours a night because her inflamed ears turned apple red. How she and Tommy, affectionate in the beginning of their marriage, couldn't hold each other or sleep in the same room. How her fingers swelled so much she stopped wearing her wedding ring. How her cries echoed through the couple's villa all day and all night. How seven years, two months and seven days after the picture was taken, Lisa decided she couldn't deal with the pain anymore.
Tommy really believes his wife killed herself so he could get on with life.
"She was a very unselfish woman," he said. "I think she was feeling she was holding me back from being happy."
Tommy and Lisa met 20 years ago on Long Island, N.Y. She walked into his hair salon, which offered free haircuts before noon. Tommy had an open chair. "Fate, as it turned out," he said.
She rested her head against the shampoo sink and stared at Tommy with those blue eyes. Those eyes made him melt. Tommy asked for her number and two years later, her hand in marriage.
They took sailboat trips up the East River. They dined on lobster at Old Westbury Gardens. And they decided, like a lot of New Yorkers do, to sell Tommy's business and move to Florida.
In the beginning, they'd go out, take spontaneous trips to the beach. When the pain began gnawing at Lisa's body, all that - the nights on the town, the cruises, the road trips - stopped.
Tommy didn't believe Lisa's pain was real for good reason: "This one doctor said, 'I think maybe you should go see a psychiatrist about this.' "
Lisa grew irate. "This is nothing that's in my head," she told the doctor. "This is pain that I have in my body."
Lisa unleashed on her husband, too. "You're listening to them," she said, "instead of your wife."
Tommy pushed her to stay active.
"Clean the house.
"Go in the back yard and do the weeding.
"Take a walk down to the beach.
"Go shopping.
"Lisa, come on. You got to get out. You can't stay home."
He just didn't understand what was bothering her. No one did. He didn't want her to sit at home and waste away. He thought if she had any shot of getting better, she had to stay busy. She tried, but the more work she did, the worse she felt.
One day, Tommy described Lisa's symptoms to a customer with similar signs. "Sounds like fibromyalgia," the customer said. Tommy had never heard of the word. He bought books and read that 95 percent of those with fibromyalgia are women. He consulted other doctors. The customer - and Lisa - were right.
* * *
On Aug. 6, the St. Petersburg Times published a columnlong tribute to Lisa. Tommy wrote it the week she committed suicide. "This is my legacy to my wife," he said. "To let people know that people that look healthy don't have to be healthy inside."
He is saddled with guilt.
"I betrayed her by listening to others instead of listening to her. We've gotten so conditioned in this world that doctors know best. That we don't know as good as they do. This is a case that they were wrong. They were very wrong."
His tribute to her is filled with grief, but also relief.
"For the first time in 10 years, my wife has no pain. I'm happy for me because I can get on with my life like she wanted me to. I can go be with my children like she wanted me to. I can get on with doing the things that she wanted me to do that she felt she was holding me back from."
Like selling the house and moving back to Long Island, where his three children and four grandchildren still live.
The day his tribute ran, he picked up the urn with Lisa's ashes. He set it on the dresser next to his bed.
Rodney Thrash can be reached at 727 893-8352 or rthrash@sptimes.com.
FAST FACTS
*According to Dr. Frank Vasey, chief of rheumatology at the University of South Florida, fibromyalgia was originally thought to be a personality disorder - one of the reasons doctors sometimes mistake it for depression or other neurological illnesses.
*Tests can't diagnose fibromyalgia; doctors rely on patient history, self-reported symptoms and other indicators. The National Fibromyalgia Association reports that it takes an average of five years to get an accurate diagnosis.
*Approximately 10-million Americans have fibromyalgia. Those affected suffer intense pain, sleep poorly and their muscles go into spasms. There are no statistics on suicide, although the national association does receive a couple of reports a year.
*In June, the Food and Drug Administration approved the first drug treatment for fibromyalgia, Lyrica, which may ease pain.
Resources
* Suncoast Fibromyalgia and Chronic Fatigue Support Group, 11 a.m., third Saturday of every month, Seminole Library, 9200 113th St., Contact Nancy Cohen, 727-559-8260.
* Chronic Fatigue Immune Dysfunction Syndrome Support Group of Sarasota, 2:30 p.m., second Sunday of every month, Doctors Hospital of Sarasota, 5731 Bee Ridge Road, Sarasota, Contact: Donna Bedits, (941) 378-0547.
* National Fibromyalgia Association, www.fmaware.org
[Last modified August 29, 2007, 17:02:17]
Share your thoughts on this story
Comments on this article
|
by Cheryl
|
09/29/07 01:50 PM
|
|
Tommy- I understand exactly what your wife wanted for you. I have chronic pain caused by failed back surgery syndrome. I am in pain 24/7 and I made my husband promise to get on with his life & remarry if anything happens to me.
|
|
by Nancy in Hawaii
|
09/22/07 12:08 AM
|
|
I know the lonliness & pain of FMS. When others dismiss FMS, it's even more devastating. I found info./some help w/websites like; WebMD, fmaware.org, myalgia.com, niams.nih.gov, fibromyalgia.lifetips.com, etc. I pray we learn, help & soon find a cure
|
|
by Pat
|
09/11/07 09:03 PM
|
|
FMS is cruel. In the mirror we see a person who appears well making it difficult to validate ourselves. Find a knowledgble doctor, listen to your body and stay as informed as possible. Join an upbeat support group and educate those close to you.
|
|
by Myrt
|
09/01/07 01:15 AM
|
|
I've educated my family on FMS, they have a better understanding of what I go thru. My husband & family give me a lot of support & have a better understanding. Only those that suffer w/this illness know how hard it is for us & I thank God for my life
|
|
by Myrt
|
09/01/07 01:05 AM
|
|
Diagnosed 8 yrs ago w/FMS & MFS, 6 months after getting married my life turned to total pain. I receive relief w/natural meds., my jaccuzi & prayers. I'm no longer in bed but just like Tommy, my husband & family said the same things... Cont.
|
|
by Kari
|
08/31/07 09:45 PM
|
|
My prayers go out to Tommy and his family as well as Lisa's family. I too have Fibromyalgia and it is hard. The more people I talk to about this "invisable" condition, the more I realize I am not alone in this fight. God bless you all.
|
|
by Patricia
|
08/30/07 09:35 PM
|
|
I have had fibro, CFS,& many medical problems for years. Many of my family don't think I'm really sick because I LOOK so healthy.I got remarried 8 yrs ago and my husband is my rock. He can look at me knowing how I feel & does everything he can for me
|
|
by Tom
|
08/29/07 11:00 PM
|
|
I have been a customer of Tommy for 14 years. My wife and I had the pleasure of knowing Lisa and seeing her smile, even in pain. Tommy always loved and supported his wife. He diligently searched for answers to this disease. Our deepest sympathy.
|
|
by Debby
|
08/29/07 12:22 AM
|
|
He can get on with his life? How convenient for him. September 10 - 16 is National Invisible Chronic Illness Awareness Week. I live with FMS. I am reviewing a book on invisible illnesses & have a release for the Times on the subject.declijas @ yahoo
|
|
by Nancy
|
08/28/07 11:55 PM
|
|
I understood Lisa so well. I have had FMS for 11 yrs and have divorced because of it. The new drug Lyrica is really helping me - I have taken it for 6 weeks and feel like I am 30 again (not 47) I understand loss, I wish she would have had more help
|
|
by Laurie
|
08/28/07 10:15 PM
|
|
I want to thank you for running this article. Hopefully, it will help raise FM awareness.I heard about this on the webmd Fibromyalgia Support group. We are here for anyone who needs us! I think Tommy is a very brave man, bringing this thing to light.
|
|
by Diane
|
08/28/07 08:30 PM
|
|
Thank you for sharing this article. I am sorry for your loss. I hope our area will have more evening exercise programs for working adults w/this condition. To date the YMCA,Clearwater with pool does not. It would be nice if they did. Thank you
|
|
by Allen
|
08/28/07 07:45 PM
|
|
I am so sorry for your loss. I know with all my heart that your wife is at peace and pain-free. She is lucky to have had you.
|
|
by Evelyn
|
08/28/07 05:47 PM
|
|
Please post anything that can relieve the pain from this terrible disease , mine started within 6 weeks of a flu shot & every year it gets worse , never took another one .
|
|
by LuAnn
|
08/28/07 05:12 PM
|
|
I used to equate it with being hit with a ball peen hammer all over your body and then getting the flu on top of it. The muscle spasms stop you in your tracks at times.
I'm sorry your wife and you had to live with FM. You were there for her.
|
|
by Catherine
|
08/28/07 05:00 PM
|
|
Tommy,you are right to go on with your life. I have RDS and often think of suicide so that my family can have an easier life.Love is wanting the best for your family. Honor her by enjoying your time here on earth. God bless you.
|
|
by Shar
|
08/28/07 04:42 PM
|
|
9 years ago, I was afflicted with FMS, Chronic Fatigue & Transverse Myelitis. I thank God for my family & doctors that are my support system. Without them I don't know what I would do. IT is a REAL disease! It took me 2-3 years to get a diagnosis.
|
|
by Tammie
|
08/28/07 04:24 PM
|
|
I just wanted to say I am sorry for your loss. I have fibro, RA and RSD and my family has a hard time understanding my pain. I sometimes think of ended the pain. I understand her way of thinking. God Bless
|
|
by Mary
|
08/28/07 03:25 PM
|
|
Imagine laying in the road and getting run over by 16 semi's. Then tell me if you feel like cleaning, walking, showering, etc....If you live with an FMS sufferer, please support that person.The more you help,the better life can be.What if it was YOU?
|
|
by Mary
|
08/28/07 03:21 PM
|
|
This article made me cry. I've had FMS for over 15 years. What's worse than the pain? Knowing people don't believe you feel it. Although IT won't kill us, we have to live with it EVERY SINGLE DAY for the rest of our lives. It Is REAL!
|
|
by SANDRA
|
08/28/07 02:13 PM
|
|
My mother had suffered with this disease and now my cousin. This disease and pain is real. Unfortunately, there are people (especially attorneys) who think that doctors diagnose fibromyalgia because they don't know what is wrong with their patient.
|
|
by MiMi
|
08/28/07 02:09 PM
|
|
Thank you so much for sharing both you and your wife's experience with the terrible pain which tries to take over lives. Thank you for speaking and standing up for all the other people who have this monster pain living with them each and every day.
|
|
by CF
|
08/28/07 01:51 PM
|
|
I have Fibro & no one knows how awful Fibro is unless you suffer from it. Her husband is a terrible man to say she is in a better place and he can get on with his life!He should have helped her rec. trmt. for depression & believed her from the start!
|
|
by Rebecca
|
08/28/07 01:33 PM
|
|
I am so very sorry to hear about this traggic situation,I really think that Doctors and everyone should be educated more on this desiease so there wouldn't be so many mistakes when telling thier patients what they may or may not have wrong with them.
|
|
by Jackie
|
08/28/07 01:29 PM
|
|
I am considered "high functioning" Ican't tell you how frustrating the pain is, every day, & feel so betrayed by your body.Tommy loved his wife; that is more than half the battle, believe me.
|
|
by TRISH
|
08/28/07 11:54 AM
|
|
This should have never happened in this day and age, no one should have to live with pain for even one day in this country but sadly they do. I have this monster also and it changes your life but I found caring drs and got good pain managment.
|
|
by Pat
|
08/28/07 11:50 AM
|
|
My family has known Tommy since 1989. He has cut my son's hair and now my grandson's. His dedication to his beloved wife, Lisa is a reminder to all of us how precious life is and how sad this disease is. My prayers are with you and your family.
|
|
by Jeff
|
08/28/07 09:57 AM
|
|
My thoughts and prayers to Tommy and his family. I have been a customer of theirs for many years and this could not have happened to a more loving, compassionate, caring couple.
|
|
by Heather
|
08/28/07 09:54 AM
|
|
continued... to not be able to do the things you love and get tired from doing the normal day to day activities, especially when you are only in your 30's. This is a REAL DISEASE!!!!
|
|
by Wayne
|
08/28/07 09:54 AM
|
|
My wife struggles with this daily and we have been down the "it's all in your head" road. She struggles with the depression & pain on a daily basis and it frightens me because the disease takes over your lives. We struggle on.
|
|
by Heather
|
08/28/07 09:53 AM
|
|
Thank you for sharing this article. I have had fibromyalgia for over 7 years, thank god others in my family have it so I knew to go to a rhumatologist for diagnosis. When people tell you, please believe them. It is very depressing to not able able
|
|
by ann
|
08/28/07 09:49 AM
|
|
This article will open eyes, even if too late. I too have fibro, and RA, the combo is difficult to deal with for me and my family. But LOVE does conquer all, and I wish that all families have that understanding. Deepest Sympathy to this family.
|
|
by LibbyRal
|
08/28/07 09:27 AM
|
|
First symptoms at age 20 - excruciating pain when the waistband of pantyhose pressed into my thighs while putting them on.Diagnosed ten years later.Laugh at the docs who say to exercise.Age 57,still working but in pain every day.IT'S REAL
|
|
by Steve
|
08/28/07 09:25 AM
|
|
A truly wonderful article. I've had the pleasure of knowing Tommy for more than half of my life (over 12 years) and seeing how much he loved Lisa. The main consolation is that Lisa is without pain, and there is now a real awareness of the illness.
|
|
by Nancy
|
08/28/07 09:09 AM
|
|
I have Fibro & no one knows how awful Fibro is unless you suffer from it. Her husband is a terrible man to say she is in a better place and he can get on with his life!He should have helped her rec. trmt. for depression & believed her from the start!
|