Sometimes it’s shooting and sharp through her limbs. Other times it’s numbing. Still, other times she has “spasms from hell.”
She feels the pain in her toes and feet and legs. She feels it when she gets up in the morning, when she goes to bed at night and all the time in between.
Hornsby is unable to lead a normal life. She barely leaves the house and if she manages to cook or clean she needs a long rest to recover.
She can’t even sit outside and enjoy a cool breeze on a hot night.
“When I’m sitting outside in the summer and a light breeze goes over my leg, it hurts,” Hornsby said. “It changes your life quite a bit.”
Hornsby has peripheral neuropathy, or PN for short. It is a painful and debilitating condition that damages the body’s nerves and affects about 20 million Americans, according to the Foundation for Peripheral Neuropathy. There is no cure, and treatments are less than half effective with unpleasant side effects.
For the past eight years, Hornsby has been controlling her pain with prescription painkillers. Handfuls of them at a time. But she wants to try something a little more controversial — medical marijuana. The legalities of acquiring it stand in her way, but she’s hoping for help from the 2011 Nevada Legislature.
Start of the pain
In 2003, Hornsby needed surgery to remove a lipoma from her back. These harmless fatty tumors don’t have to be taken out but can be removed if they cause discomfort. In Hornsby’s case, the lipoma was pushing against her spinal nerves.
Even after it was removed, she was having problems recovering. Hornsby went to a doctor at Reno Orthopaedic Clinic who told her she needed emergency surgery because one of the discs in her spine had degenerated. So she did, but the pain kept shooting up and down her leg. Then it started in her hips — a pain that persists today — feeling like a vice was pressing on them all the time. Then the numbness in her foot and pain down the front of her legs started.
After a fight with her insurance company, Hornsby had two of the discs in her back fused together. A second opinion prompted another surgery to remove a handful of screws and other hardware from her back. In November 2008, she had her last spinal fusion surgery. But through all the attempts to lessen it, the pain got worse.
Hornsby quit her job at Western Nevada Supply in February 2008. She was able to work part time at home for other employers after that but in December 2009 her condition forced her to stop and she hasn’t been able to work since.
“There are no other jobs where you can lay down on the job,” she said.
In 2009, she was diagnosed with severe residual PN brought on by failed back surgery syndrome, the body’s inability to recover from back surgery. She filed for disability and ever since has mostly stayed at home with her two Jack Russell terrier mixes occupying her time with whatever her pain will allow her to do — which isn’t much.
Cause of the pain
Dr. David Ginsburg, who teaches at the University of Nevada School of Medicine, specializes in neuromuscular disease and electrodiagnostic medicine. He has seen thousands of patients with PN since he went into practice in 1993.
Symptoms of PN can include numbness or lack of feeling, tingling like pins and needles, pain that is electric shock-like, aching, throbbing or even like sandpaper rubbing against the skin, Ginsburg said. Pain levels can fluctuate in severity and as it gets worse, the patient typically feels weakness or loss of power in limbs, Ginsburg said.
PN usually starts in the feet and works up the calf, he said. Once the pain gets to the knee it might start to affect the hand and begin the process in the arm. As it progresses, Ginsburg said, the patient can develop trouble moving their legs and arms, which is what has happened to Hornsby.
Pam Shlemon, president and executive director of the Foundation for Peripheral Neuropathy in Chicago, said that if PN affects a person’s motor skills they will experience a lack of balance and coordination, and possibly some paralysis. If it affects the autonomic nerves, she said, the patient will have unusual sweating, sharp drops in blood pressure and bowel or bladder problems.
Shlemon said PN is a manifestation of various other conditions. Sixty percent of all diabetics have PN, with nerve damage being caused by sugar irregularities in the blood. Chemotherapy is the second leading cause, Shelmon said, with between 30 and 40 percent of patients developing the condition. Many HIV/AIDS patients also develop PN because of all the toxins from medication to battle the infection.
The most common medications used to treat PN are Lyrica and Neurontin, anti-seizure medications, and Cymbalta, an anti-depressant, Shlemon said. Side effects, however, can include nausea, dizziness, impairment while driving and more.
Laughter is a good medicine for Hornsby. It is something she and her husband, Tony, try to use regularly.
“We joke a lot about my condition,” Hornsby said. “Especially my husband. He calls me granny.”
The couple used to go out a lot, Tony said, but now their few excursions are usually very short and often involve Tony pushing her in a wheelchair. Despite the changes forced upon them, Tony is glad his wife has not given up on life like others he has heard about with the same condition.
“If you don’t share a sense of humor about this you’re just screwed,” he said. “If you have that kind of outlook you’re just making it worse.”
Hobbling around the house and using a walker to help her cook and clean aren’t the only things that make Hornsby seem well beyond her 46 years. She has a box containing two dozen orange prescription pill bottles and takes various combinations of medicines several times each day depending on what she feels. She even has topical pain killer for when she puts on her pants.
“To get dressed I have to put lidocaine, a numbing gel, on my legs,” she said.
For many people, Shlemon said, symptoms and side effects are worse at night when people don’t have anything else to think about. That is where Hornsby hopes medical marijuana can help.
Pot as a possibility
Since she doesn’t work anymore, Hornsby doesn’t worry much about lack of sleep. She still gets up with her husband at 5:30 a.m. every day to make coffee and try to keep a normal schedule.
Despite her effort, Hornsby still spends a lot of nights trying to minimize her discomfort.
She sleeps with her legs elevated and her head flat. She can’t put a blanket over her right leg, and sometimes neither leg can be covered, because it hurts her skin.
“It feels like somebody is putting a hot iron on my leg,” Hornsby said.
Sometimes she will use sleeping pills but they don’t always work. To help her sleep and relax, she would like to try medical marijuana. She asked her doctor about it and knows she can get a recommendation for it but in Nevada it is illegal to sell or buy it.
According to the state Department of Health and Human Services, any doctor of medicine or osteopathy licensed in Nevada can recommend a patient for the Nevada Medical Marijuana Program. However, according to the department’s website, “Pharmacies can only dispense medications ‘prescribed’ by licensed medical practitioners. The federal government classifies marijuana as a Schedule I drug, which means licensed medical practitioners cannot prescribe it.”
Morgan Fox, communications manager for the Marijuana Policy Project in Washington, D.C., said the Department of Justice has instructed local prosecutors not to expend resources pursuing people who are in compliance with their state’s medical marijuana laws. However, he said, any violation of state laws will open up a person or business to federal charges. The Drug Enforcement Agency often will bust people it has a problem with for such things as not paying taxes or growing one too many plants, according to Fox.
Doctors technically are not allowed to prescribe medical marijuana, Fox said, because marijuana is categorized as a Schedule 1 controlled substance under federal law. States, including Nevada, are able to allow their doctors to “recommend” marijuana, but in order for a person to acquire it the state still has to allow pharmacies or dispensaries to sell it.
Hornsby is allowed to grow her own marijuana in Nevada, but she can’t acquire the seeds to do so. On that issue even the state passes the buck by recommending people talk to a lawyer about their rights when it comes to getting materials to grow their own marijuana. She could drive to California, where several dispensaries are in operation, but they are not allowed to sell to her unless she has a California medical marijuana card. Gino DiMatteo, owner of City of Angels 2 dispensary in South Lake Tahoe, said it is unfortunate that people with cancer and other conditions can’t acquire their medicine where they live.
“We turn away a lot of people who come here with Nevada cards,” he said.
Or, they could try to get it illegally.
“Do I look like someone who wants to do that?” Hornsby asked. “I’m not going down to Fourth Street.”
“We want to do it the right way,” Tony said.
Turning to lawmakers
State Sen. Mike Schneider, D-Las Vegas, knows someone who did get marijuana that way for his migraines. A respectable, middle-class friend of his wanted to see if it would help his incapacitating headaches but he had no other way to acquire it. This friend of Schneider’s got some on the street but it didn’t help.
That’s why Schneider plans to introduce bill draft request 234, to “bring it all above board” and help people like his friend acquire legal, controlled marijuana that might do them some good.
“The whole thing is we want to put the ‘medical’ back in ‘medical marijuana,’ ” he said.
Schneider is not the only lawmaker taking up the issue. As the new session of the Nevada Legislature began last week in Carson City, Assemblyman Paul Aizley, D-Las Vegas, was approached by a man in the hallway. This man thanked Aizley for a bill he plans to introduce that would help him buy medical marijuana. Aizley did not recall the man’s name, but did remember that he is a businessman who suffers from a debilitating illness.
“Marijuana lets him get through the day,” Aizley said.
Aizley plans to introduce bill draft request 40-912, which would change the law to allow cooperative growing and producing. Schneider’s proposal would start a pilot program with a single pharmacy overseeing the marijuana production and sale. Both proposals will be heard on a date to be determined, Schneider said.
Aizley said with the orders coming down from the federal level to ease off on prosecution of cases that do not violate state law, now is a good opportunity to make a change in Nevada law.
“I’ve seen the arrests and things taking place and I think they’re unreasonable,” Aizley said.
Hornsby doesn’t care about any social stigma surrounding marijuana. She just wants the chance to see if it will help. But until the issue is considered by state lawmakers, Hornsby will continue as she has been: going out when she feels up to it, supporting others through a Facebook group and otherwise trying not to drop out of society.
“I try to stay positive it won’t get worse,” she said of her pain, “but there is a chance it will.”