Every Day Begins the Same Way – With Medication
Vacha’s treatments are experimental and very expensive. She is working to make her life with Ehlers-Danlos Syndrome a little better.
JACKSON, MI — “Rocking slowly back-and-forth on her mother’s screened back porch in Summit Township, Elizabeth (Alden) Vacha forces a smile, disguising the pain and frustration she feels.
Unable to help her family, Vacha tries to enjoy the warm weather as her mother and husband prepare dinner for the family inside.
Vacha would like to be unpacking the dozens of boxes in the garage from after she moved back in with her mother, but the 33-year-old doesn’t have the strength and stability to raise a mug full of water without a slight tremble in her right arm.
“I want to be able to at least cook dinner and things people don’t even realize,” Vacha said softly. “I would be excited to be able to stand up long enough to do dishes.”
About six years ago, Vacha was diagnosed with Ehlers-Danlos Syndrome (EDS) — a group of inherited disorders that affect connective tissues, according to the Mayo Clinic. Vacha said the types of EDS vary, but she was diagnosed with Type 3, or hypermobility, meaning her body does not produce collagen.
The body uses collagen for a variety of things, including joint health. Without collagen, Vacha struggles with joint stability and structure. On a scale of one through nine, Vacha’s symptoms are on the more extreme side, ranking as an eight.
“There’s continuous joint slippage whether I do anything or not,” Vacha said.
The majority of Vacha’s treatment is experimental and not covered by insurance making it very expensive for the family.
Recently, Vacha’s family moved out of their home in Kalamazoo and into Vacha’s mother’s home in Jackson to save on costs and have more family support.
So far, Vacha has raised about $10,000 for treatment, but is hoping to reach $25,000 that will help offset the costs .
Sometimes, Vacha will awake from an hour-long nap to find one of her fingers dislocated, with the fingernail directly facing another finger.
If Vacha bends over to pick up the mail off a table a couple of feet above the ground, her hip could dislocate, sending her to the ground. With a simple cough, a rib can slip out of place.
Along with the joint-slippage comes a non-stop, sharp, stabbing pain that will never go away. Vacha said the best way she has been told by the Mayo Clinic to describe her pain is to clamp a clothespin on the flesh part of your finger, leave it there for a minute, and multiple the feeling by 50.
“The fact that even on a day when she’s not in a huge amount of pain, I can still see how tough it is for her to do the day-to-day things,” Jon Vacha, Elizabeth’s husband, said. “It’s really hard on her that she can’t interact in the way that she’s been used to.”Every day begins the same way: With medication.
Vacha takes multiple different pills and supplements to help her through the day.
“Where I’m at now, I’m on a schedule to where before I am fully woken up, I have medication I take immediately,” she said. “It makes it less painful to get out of bed so I can actually get out of bed.”
Sometimes, if she works too hard, Vacha’s body will lock up for days at a time, making it nearly impossible for her to move.
“I have woken up in the fetal position on the bed and it has taken two hours of manipulation and slowly moving centimeter by centimeter to get everything to flatten back out,” she said.
Despite the pain and instability, Vacha has continued to push forward to develop a life for herself through years of serious strength and stability training.
At one point, Vacha was a construction worker in the Jackson area, able to bench press 190 pounds and leg press 650 pounds. In her spare time, Vacha enjoyed landscaping, going for long runs and physical labor.“Whatever it takes, you do it. You have a family and you move forward. I’m just determined and I always have been.”
“The first year my husband and I were married, he got a big nice toolbox,” Vacha said with a chuckle. “When he got it, he said ‘Thanks, I’ll put my hammer in here along with all of my wife’s tools.’”
Despite all of the possible negative outcomes, Vacha has remained determined and refused to give into the crippling side effects of EDS, something she learned from her father when he was diagnosed with cancer when she was 7-years-old.
“Doctors told him he had three months to live and he said ‘No I don’t, I’m done when I tell you I’m done,’” Vacha said, holding back tears. “I watched him get up everyday and fight.
“Whatever it takes, you do it. You have a family and you move forward. I’m just determined and I always have been.”
On April 21, 2011, Vacha was involved in a two-vehicle crash that set much of her progress back.
Because of the EDS, the accident caused her sternum to start rotating counter-clockwise, rather than clockwise. Vacha also suffered multiple minor tears to her shoulder, limiting her range of motion.
As a result, Vacha has lost a lot of her strength and stability in her right side, and has limited mobility because of the pain from pinched nerves.
“If it’s an OK day, I read with the kids and I can do quiet things with them,” Vacha said. “I don’t do much of anything because I can’t.”
Because of the injury, Vacha can’t lift more than 10 pounds or drive, and often has to lay flat on her back for three or four hours at a time.
Recently, Jon Vacha took a different position at work to be able to work from home and make sure he was there to help take care of the family’s two young children, Michael, 7, and Addison, 5.
“For me, its more of a shift in responsibility in how things go,” he said. “Depending on the day and how she’s feeling, there’s the day-to-day things that you don’t really think about like cooking and cleaning.”
In January, Vacha weighed 120 pounds, but said she stopped keeping track once her weight dropped to 80 pounds about a month ago.
To help her with stability, Vacha sometimes wears a brace and walks with a cane, decorated with different colored scarves for her children to hold on to instead of holding onto her hand.
Still, Vacha has to have someone around her for the simplest of tasks, including taking a shower or bath. Recently, Vacha cut 18 inches of her hair and donated it to make life easier after she lost her balance while showering.”
“For me to be like this,” Vacha said, “it’s hard to even put into words because it’s so frustrating.”
In the past, Vacha has received numerous methods of treatment, but none with the success of prolotherapy — injections in her hip.
Before the crash, Vacha received three, $300 injections of a sugary water solution in her hip every four weeks for four months. While doing the therapy, the stability in Vacha’s hip increased dramatically and she was able to run a marathon.
After her last appointment with her physiatrist, it was discovered that Vacha has lost three disks in her neck and developed scoliosis in her upper back in past 11 months.
“It’s been a pretty big learning experience and life change,” Jon Vacha said. “I don’t think people think about it until they are in the middle of it and then you realize.”
Because nothing has helped her improve since the car crash, Vacha’s physiatrist suggested she go to the Mayo Clinic in Rochester, Minn. Vacha was placed on a waiting list and told she wouldn’t be able to get into the clinic until September, but a cancellation opened a spot for her on June 24.
“When they call, you don’t tell them no,” she said.
Initially, Vacha believed she would be at the Mayo Clinic for a substantial amount of time, expecting a surgery to help with her lack of stability and then a 21-day rehabilitation program.
Because of Vacha’s experience with rehabilitation, along with x-rays revealing surgery wouldn’t help her improve, she was sent home from the clinic after a week.
Tests at the Mayo Clinic showed the injuries Vacha received in the accident have caused her brain to constantly be on a “fight or flight” mode.
To help Vacha get back to a more active lifestyle, Vacha will receive two experimental nerve blockers in her ribs that will “force a reset of her brain’s pain center.”
Vacha will also receive more prolotherapy injections and see a medical massage therapist that will attempt to manipulate her body back into place.
Each injection Vacha receives costs $150 and she will receive a minimum of three injections once every 30 days for possibly the next year.
Along with the manipulations and injections, Vacha hopes returning to her strength and stability training will allow her to chase her kids around and be a mom once again.
Once she was told that starting her strength and stability exercises wouldn’t “kill her,” Vacha was immediately in the pool working.
“When I have a goal, it gets done. I’m just at the point where the goal is in front of me and I for once can’t get it on my own.
“It drives me crazy. I know that the answer is there, I just have to get it.”
Vacha is trying prolotherapy, nerve blockers and manipulation. Each EDSer is unique in their response to different treatments.
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