LIVING WITH LUPUS: Spouse gets support from unit, family; passes it on

  • Published
  • By Air Force Staff Sgt. Zachary Wolf
  • JBER Public Affairs
JOINT BASE ELMENDORF-RICHARDSON, Alaska --  It is 6:59 a.m. and you are half asleep, subconsciously knowing you will hear the sound of reveille in another minute.

The song plays all over base and you hear it drifting in through your open window, but it's not the song that wakes you up.

Sharp pain shoots through all your joints as you begin to wake and the pain keeps getting worse as you become more awake.

You try to turn to roll out of bed but the pain is so much, all you can do is weep silently.
This has happened to you before and you know that today you will need to be taken care of because you know you won't even be able to tie your shoes let alone shower by yourself.

This is a reality for Madison Mann, the wife of Air Force Staff Sgt. Sam Mann.

Lupus is an autoimmune disorder in which the immune system attacks itself.

"Lupus in Latin means wolf and it is called lupus because of the rashes we get on our face look like wolf markings," Madison said. "And the rashes we get on our skin look like bite or scratch marks from a wolf."

There is a genetic link for lupus and it usually happens in women, 90 percent of which are women of child bearing age.

It happens more frequently in people such as American Indians and African Americans, but it can also happen to Caucasian men and women.

There are different kinds of lupus. One example is discoid lupus, which strictly attacks the skin, leaving huge rashes or sores, which in turn can leave gaping scars.
"I have SLE, which is Systemic Lupus Erythematosus, which means it can attack any organ in my body at random," Madison said.

The miscarriage rate for women with lupus is exceedingly high. If they do carry through nine months, many of the babies are stillborn or they are born with neonatal lupus, which means their organs are enlarged and they can die soon after.

"I am on a lot of medications to attack my immune system to prevent it from attacking my body. It leaves you open to catching almost any disease, whether it be a cold or something far worse. There is no cure for it," she said.

She wasn't born with lupus and in fact, had many achievements before she was diagnosed. She graduated from high school early, got a bachelor's degree at 19, a master's degree at 21, received her real estate license, bartending license, and commercial truck driving license, and earned an Early Childhood Education Associate's degree and certification to teach.

Madison's degree is a Master's of Educational Psychology and she was hired as a school therapist but ended up getting so sick that she had to resign.
"This disease has forced me to slow down and I don't like that," she said. "But I have no choice, because it's be sick all day, all week or all month, or just tell someone you can't go skydiving or whatever the case may be."

One thing most doctors agree on is that the environment can trigger the onset of lupus.
"Stress can trigger it. There is no real definitive reason why you have it. I would say that the cause for me was stress, and I lost the genetic lottery," Madison said.

It all started four years ago with bad back pain.

The back pain got worse and spread throughout to her fingers and toes.

She went to the doctor, who put her on anti-inflammatory medicine and muscle relaxers. When it continued getting worse, she went to a chiropractor and then to physical therapy.
It helped but she started having other symptoms like sores in the mouth and clumps of hair falling out. They treated each instance separately: mouth wash for sores in the mouth and switching to a different shampoo for hair loss. It kept getting worse and she wasn't sure what was wrong with her.

"It wasn't until my mom got it (lupus) and I researched it and I was like 'that is what I have,'" she said.

According to the American College of Rheumatology, there are 11 symptoms one could have and if they have four of the eleven, that would justify a blood test to see if they have lupus. These symptoms are: molar rash, which is the butterfly rash of the face; discoid rash, which are raised and disk shaped bumps; photosensitivity; oral ulcers; arthritis; serositis; a kidney disorder; a neurological disorder, like seizures; a blood disorder, like leucopenia (low number of white blood cells); immunologic disorder, and abnormal double-stranded DNA from antibodies that signal lupus.

"When people think of lupus they think of a white haired grandma with glasses around her neck and a fanny pack," Madison said. "They don't think of a blonde haired 21-year old from New York; if they even know what lupus is."

Once she was diagnosed, the search began to find a rheumatologist.

The first rheumatologist she had was a bad experience overall, Madison said.

According to Madison, the rheumatologist treated each of her symptoms as a different disease to increase the number of items billed to insurance. Madison also said, because of the wrong treatments given to her and complaints from other patients, Tricare began investigating the rheumatologist.

"Be your own advocate. Research your disease and medications," she said.
According to Mrs. Mann, there are five things that need to be done when you know you have a chronic illness.

The first is to find a good support group in friends, family, or other people who know what you are going through. The second thing is to make sure you are mentally and physically healthy.

This involves going to all your appointments and making sure you do the therapy. Then you have the medication side of things. It is suggested you research what the medicine does.

Note what medicines work for you and what don't. The next step is to accept you have the illness. She urges the person with the illness not to ignore what they have.

"Please do not believe that if you do not acknowledge it, then it's not there," she said. "Please do not believe that if you do not say it aloud or think about it, it will not continue to cause internal and external damage to the only body and the only life that you have,"
The final part is to know your disease.

"Education is priceless," said Madison. " Educating others is invaluable, and knowledge is power. Be aware of your disease and its signs, symptoms, and requirements beyond the simplicity of a diagnosis."

Madison sees a number of doctors on- and off-base.

For example, she sees a dermatologist, therapist, optometrist, rheumatologist, ear, nose, and throat doctor, and a dentist, all in regards to her lupus.

"It's like a full-time job, being sick," she said in regards to all the doctor visits.
According to her family, at the beginning, the off-base doctors weren't communicating to the doctors on base, which resulted in many doctor visits.

"Just in the last 10 months or 11 months, we have probably seen the doctors 150 to 200 times," said Sam Mann, 703rd Aircraft Maintenance Squadron C-130 Hercules crew chief.

Doctors aren't the only caregivers to Madison. Sam plays the role of full-time caregiver whenever her lupus "flares up."

"I have good days and I have bad days, and it is difficult and frustrating to go to sleep thinking, 'Am I going to be able to get out of my bed by myself tomorrow?'" Madison said.
Sam said that he took his wedding vows to heart, especially when Madison was diagnosed with lupus.

"We said for better or for worse, in sickness and in health, but at 21, a year after we got married, you don't expect to follow through with that so soon," Madison said.
"Staying true to the vows and staying strong is easy because I want to be there, and I want to do everything I can," Sergeant Mann added.

The disease affects more than this husband and wife. According to Sam, it affects friends, family, and coworkers.

"It affects others by me leaving the flight line for two hours (for an appointment), someone has to pick up the slack and do my work while I am gone for those two hours," he said.

Some people have asked how Sam goes day-by-day and how he deals with his wife's disease.

"It's the thoughts of watching her happy, seeing her be happy to go do something, that makes the difficult times worth it," he said.

Another form of support the couple receives is from resources on base.

The chaplain on base offered multiple DVDs and books.

They attended a "scream-free marriage" seminar and couples communication class, and Mrs. Mann has also taken stress management and anger management classes through the Family Readiness Program and through Family Advocacy.

"For awhile, it seemed like it was me, him and lupus... It was like a love-hate triangle," she said.

Going on a retreat, sponsored by the chaplain, helped the couple focus on themselves rather than everything else that was going on in their lives, and learn to better communicate with each other.

"We had to relearn how to communicate with one another all over again on a personal level because for a while in the process it became like a business relationship, where our goal was to get her better and our marriage didn't matter anymore, what mattered was her and her disease," Sam said.

"I was not necessarily an angry person, as in physically. I was just internally angry that this was 'Why me? It's not fair,'" Madison said. "I had this negative outlook and it stressed me out, so I took the anger management class and I am not ashamed to admit it because it really helped."

Madison also uses the fitness centers on base to do yoga, using the sauna and steam room at the Buckner Fitness Center which she says is "good for detoxing your body."
Something that the couple has at JBER is support from the 703rd Aircraft Maintenance Squadron and the 537th Aircraft Maintenance Unit, to which Staff Sgt. Mann belongs.
"(Seargent Mann) just came back from Japan for two weeks, and his unit checked on me," Madison said. "His squadron superintendent checked on me, they all checked on me."

"They made sure to check on me and I would tell them how I was feeling and they would say 'Do you need me to come over? Do you need me to get groceries; do you need me to do this?' Madison added. "They would invite me over for dinner for I wouldn't have to cook for myself."

Senior Master Sgt. Thomas Morton, 537 AMU superintendent, led the charge in checking up on Madison while Sam was gone.

"I feel it's very important to support them in every way possible, because in reality, the greatest resource we have in the Air Force is our people, and our people should be taken care of," Morton said.

Morton also says helping his people, helps the Air Force and more specifically the mission they have here at JBER.

"Supporting Madison by allowing Staff Sgt. Mann to help her get to her appointments means that he will have his head in the game when he's working on the flight line instead of worrying about whether she made it or not," Morton said.

"Ensuring people who work the flight line have their heads in the game is pivotal to getting the mission done safely and on-time," he said of their support for Sam.
Being in the military, a deployment is a very high possibility for Sergeant Mann.
"It's a scary thought, but I know that the people I work with here, we're pretty small unit and close-knit; they would do everything in their power to help," Sam said.

Whether it's others with lupus with spouses that deploy, or the common person who may not know what lupus is, it is Mrs. Mann's goal to reach out, educate and provide a support network through The Purple Butterfly Promise Outreach Program.

"We made the world a heart because we want compassion and empathy," Madison said, explaining the Purple Butterfly Promise logo.

She joined the Lupus Foundation of Alaska hoping to find support and someone she could relate with but there were only seven older women who have had lupus for a long time, so she wants to make it easier for people with lupus or the caregivers to find a support group through her program.

"Part of my outreach program is to reach out and support those who feel overwhelmed and feel lost and feel alone because I personally don't know anyone my age with lupus," she said.

Mann also sells purple bracelets that show support for spreading the knowledge of lupus but also raising funds to further the research for a cure for lupus.

Mann also says that she would like to use her skills as a therapist and an educator to help those with lupus and educate those who don't know what it is.

Purple represents courage and endurance and the butterfly represents freedom, transformation and recovery and also comes from the butterfly rash on the face that comes with lupus.

For more information about the program, visit Madison's website, www.purplebutterflypromise.com

In a letter, Mrs. Mann wrote that she has two tattoos on her foot that help her get through the hard times, the first one being Psalm 56:3.

"Next to it (the Psalm 56:3 tattoo), I have written and tattooed "fearless" in my own handwriting to remind myself that the terrain may get rough, but I just need to hold on tight and ride it out and trust that I will be taken care of and come out of it all in one piece in the end," she said.