It all began in March of 2011, when Gina Mercieri was t-boned by a Chevy Truck that ran a red light going 45 miles per hour. Luckily, 27 year-old Gina walked away with only a hairline fracture to her left arm. After 8 weeks, Gina's bone had healed but the pain in her arm had grown worse. Doctors told her the pain was in her head. Gina knew better, "It was as if somebody was filling my arm with lighter fluid and lighting a match."
After bouncing around from doctor to doctor for a year, Gina finally got a diagnosis. The fracture to her left arm had triggered the onset of a disease so rare and sinister, its nickname is the 'Suicide Disease.' Complex Regional Pain Syndrome (CRPS).
Complex Regional Pain Syndrome is a chronic nervous system disorder that can affect any area of the body. It often occurs with a minor injury to the arms or legs. When left undiagnosed or untreated it can spread to the vascular systems, cutting off circulation to all parts of the body, including major organs. There is no known cure.
On the McGill Pain Index CRPS is ranked 45. The burning pain somebody with CRPS experiences trumps not only childbirth, but also the acute amputation of fingers and toes. Gina experiences this degree of suffering on a daily basis. The episodes are so excruciatingly painful she will often black out.
If CRPS is caught early, it can be contained. The year Gina lost in misdiagnosis cost her dearly; living with CRPS has become increasingly difficult. The disease spread from her left arm to her left leg, then quickly to her right shoulder. It wasn't long until CRPS began its assault on her immune system. Gina's immune system tries to fight CRPS as if it were some sort of infection. The disease has invaded her respiratory system, causing shortness of breath and absent siezeures. Even worse, it prevents her from sleeping. Gina no longer experiences REM sleep. Without sleep, Gina's immune system cannot recover. Her body is fighting a war against an invisible enemy and the gas tank is perpetually empty.
Three months ago CRPS accessed Gina's nervous and circulatory systems, which causes progressive damage to her internal organs. Gina's digestive tract is obliterated. The physical act of eating food is nearly as painful as its digestion. Her short term memory is fading. Gina will randomly lose her sight completely and without warning.
Living with CRPS is a contradiction in terms, it's not really living at all.
For many with this disease, the only release they see is suicide. Last year, Gina joined a support group for patients with CRPS. At the time, the group was 11 people strong. That number has since whittled down to eight. The last incident, a man ended his life by throwing himself in front of a bus.
I was nervous to meet Gina. I worried that her flight from her home in New Hampshire the evening before would have exhausted her. Do I hug her? Would that hurt her? Can she walk ok? Gina arrived at theCHIVE offices with her boyfriend, Marine Corps Captain Jason Back. She walked up and gave me the biggest hug, "I'm a hugger" she said. The only thing I could think to say was to tell her: "Hi, Gina, we're here to get you the help you need."
Her response was quick: "Thank you so much. But I'm here to get the CRPS sufferers and undiagnosed sufferers the help they need. Only 4% of the medical community has ever heard of CRPS, and your story about me will change all that."
Gina showed me her TENS (Transcutaneous Electrical Nerve Stimulation) unit: It's a series of electrical cords she "plugs into" her left arm which send electrical impulses to nerves and help circulation of the limbs. One hour on and one hour off, all day every day.
Blood circulation is everything to Gina. The CRPS causes restricted and erratic blood flow to her extremities. Many sufferers (that's the term she uses, "sufferers") will lose limbs because of the disease. The TENS unit alone doesn't get the job done. Gina must stay constantly mobile. Physical activity to Gina is the most painful thing she can possibly do and yet without it her body would cease to circulate blood properly. She would lose her limbs, and she would die.
So Gina goes jogging. The recent spread of the disease to her lungs has made such a task even worse. Jason never leaves her side. She grimaces through the sand on Venice Beach but never stops, pushing herself forward despite the immense pain. We all watch from theCHIVE balcony in disbelief. When it's all over, Gina collapses. Her body is not only physically exhausted, but her lungs are also refusing to absorb oxygen. Gina told me later, "The worst is suddenly not being able to breathe, the respiratory attacks. It's not like gasping for air, you simply cannot take in air. If I'm home alone I can't pick up the phone and call for help. That's the scariest of all. The pain alone won't kill me, but not being able to accept oxygen will."
I ask how she does it every day. Gina points to Jason, "Him. He's my reason. When I was diagnosed I gave Jason an out. I laid it all out for him, you know, what was about to happen to me, how…how bad it was about to get. And he said, 'You're not a quitter and neither am I. I'm not going to let you get rid of me that easily.' He has never left my side."
To treat her illness Gina is on a cocktail of medications, 28 pills in all. Gina hesitates when talking about all the pills. She was never much of a pill popper. I get the feeling she hates the daily pill regimen nearly as much as her disease. "Do you skip certain pills you've been prescribed," I ask? "I'd rather feel the pain than become a zombie if that's what you mean. There's got to be a better way." To that end, Gina has become a great student of CRPS. Ironically, Gina was a neurology major in college, providing a solid foundation for her future self-education. She has become a walking encyclopedia on the disease. "I do everything, I even take my own blood samples. I have my own file. It's a whole lot better than watching a doctor quietly sneak into another room and Google my disease."
In her research Gina has discovered new treatments that give her hope for the future. Treatments we can help provide. Six months ago, Gina discovered Hyperbaric Oxygen Treatments (HBOT). The pressurized chamber delivers rich oxygen to every region of Gina's oxygen-starved body. After a half hour in the chamber, " I feel my arms and fingers start to tingle as Oxygen arrives. After an hour I feel like I could do cartwheels. It was like the disease was gone." The HBOT treatments have positive, lasting effects. For days afterwards Gina is able to function like a perfectly normal person. But the FDA has not approved HBOT treatments for CRPS. Insurance doesn't cover the treatment and she is not allowed in hospitals' chambers. "Like having my nose pressed against the glass, looking in on help I can't have." Instead she flies to the Deerfield Beach Center of Hope in Florida. Deerfield is a freestanding clinic with a Hyperbaric Chamber. It's a long trip, but it's worth it.
Finally, there are a number of functional restoration programs that implement a myriad of interdisciplinary therapies over a 6-8 week course. Incorporated in the program are specialists ranging from physical therapy to pain psychologists trained in chronic pain management. The goal is to provide CRPS patients the best opportunity for recovery and to arm them with the training they'll need to overcome their daily anguish. Brooks Rehabilitation Center in Jacksonville has one of the best Neuro Recovery programs in the world. The costs of an FRP Program can exceed $40,000, not including travel and hotels.
Finally I asked: "Is remission possible?"
"I don't know, John. Maybe. But what is possible, I'm certain, is these treatments can improve my quality of life. If I got 30% better out of all this, what a difference it would make."
The goal has been set at $60,000. Gina is here at theCHIVE office watching it all happen. I'll bring you updates as they arrive. As many of you can tell, since the new year began, Chive Charities is surging, Random Acts of Kindness on theCHIVE have become a staple of our community spirit. And, with your support, we're just clearing our throat.
Over the past year, Gina's body has been closing in all around her. Each day, Gina wakes up to unimaginable pain, the sum total of which is the equivalent to having ones fingers amputated. It is a sort of warped 'Groundhog Day' from which there is no escape. Today, the Chive community can rally around a kind and tender soul and, with outstretched hands, open her world back up again.
Donate to Gina RIGHT HERE.
Gina will be on Twitter all day. Say hello on her Twitter Machine.
UPDATE: $25,000 in less than 30 minutes. Gina is reading the comments, smiling. We're blown away.
UPDATE #2: $50,000 in less than an hour. The home stretch, let's do this!
UPDATE #3: $60,000!!! Crushed the goal in 1 HOUR. Chivers, I don't know what to say. Gina is, "Speechless." Many tears here at the office.
Before I published this article, Gina handed me a note. It read:
“This illness stripped me of everything and left me dependant, depressed, and hopeless. This is no way to live a life, I know. Y’all have no idea how humbled and blessed I feel to have the Chivers back me up, y’all are heaven sent. Thank you for this second chance at life.”
Donate RIGHT HERE.
Gina’s Twitter Machine.
UPDATE: $25,000 in less than 30 minutes. Gina is reading the comments, smiling. We’re blown away.
UPDATE #2: $50,000 in less than an hour. The home stretch, let’s do this!
UPDATE #3: $60,000!!! Crushed the goal in 1 HOUR. Chivers, I don’t know what to say. Gina is, “Speechless.” Many tears here at the office. Will update w/ pics in the DAR.