Miller Overcomes Rare Disease to Play for Concordia
PORTLAND, Ore.—It's rare that a 21-year-old knows what will kill him or her, and yet, that's the case for Concordia volleyball player
Melanie Miller.
Miller is one of only a handful of people in the state of Oregon who has Limited Systemic Sclerosis (LSS), an autoimmune connective-tissue disease that attacks Miller's internal organs and will eventually take her life. Due to its rarity, not a lot is still known about the disease, but Miller says it's a combination of Lupus, Scleroderma, Acid Reflux, Pulmonary hypertension and Rheumatoid arthritis.
As if that weren't enough though, Miller's LSS is linked to Raynaud's, another disease she has that affects her circulation. Meanwhile, the cherry on the top came this past summer when Miller was diagnosed with Type I Diabetes.
All those different issues mean Miller has to take 12 different medications twice a day and constantly check her blood sugar to make sure she's at a healthy level.
However, in the face of all that, Miller has kept playing volleyball for the Cavaliers.
“I've played volleyball for 15 years and it's something that I've always completely loved and has been an escape for me throughout all the challenges in my life,” said Miller. “I know with volleyball I can just be in the moment, enjoy the team, the game and everything that surrounds it.”
Before volleyball could become Miller's escape though, she had to show an incredible inner strength at a young age as various health issues threatened to take volleyball away from her.
The LSS Diagnosis
While Miller's health issues first cropped up with the diagnosis of Raynaud's when she was 11, the real change in her career as a volleyball player and in her life came when she was diagnosed with Limited Systematic Sclerosis during the spring of her junior year of high school.
Miller's doctors first found the LSS in her body when they drew blood as part of a check up on her Raynaud's.
The LSS forced Miller to go in and out of the hospital at the Oregon Health and Sciences University (OHSU) for months and caused her to miss most of the spring semester of her junior year of high school.
Miller lost a lot of weight during that time, as she had to get used to the multiple medications she was suddenly taking.
However, Miller also had to get used to the emotional weight of the disease, which she can live with, but will eventually kill her. Over time, the LSS will attack Miller's internal organs by calcifying them, which will be irreversible.
“There's not a specific time frame, but, ultimately, it will be that one organ will fail and then another,” said Miller.
After the initial shock of the diagnosis, Miller's family wanted a second opinion, so they took her to the Mayo Clinic in Minnesota over the summer. Miller spent two and a half weeks at the Mayo Clinic, but the doctors there agreed with the doctors at OHSU.
Miller had LSS.
For Miller, that second diagnosis came with mixed emotions since it was a relief to know she hadn't been led astray, but “surreal,” in her own words, to have to be told that she was terminally sick for a second time.
Understandably, the LSS diagnosis left Miller angry and depressed, not only over the sudden threat to her life, but also over the loss of her volleyball career.
Miller had been playing for an elite club volleyball team in the Nike Northwest Juniors, but the LSS diagnosis limited her participation. Miller had counted making the Northwest Juniors team as a huge accomplishment in her career, so it hurt when things out of her control kept her from performing at her best.
However, rather than lament her loss, Miller used the possibility of playing at a high level again to drive her through the endless hospital visits that spring.
Miller credits her family for that dogged determination, which would eventually lead her back into playing shape.
Miller still had to adjust to playing with all the medications she was taking though, which produce multiple side effects including nausea, fatigue and migraines.
The nausea frequently pops up for Miller during matches, including the Cavaliers' match against Corban this season when Miller felt so nauseated, she vomited right before the national anthem.
LSS has also raised Miller's resting heart rate to 140, which Miller has to take medication to lower or she wouldn't be allowed to play. There's no other option than the medication, but the side effects leave Miller extremely fatigued.
Overall, Miller is thankful that the medication has extended her volleyball career, but frustrated with how it makes her feel.
“Sometimes I just feel kind of foggy,” said Miller.
It wasn't easy to deal with those changes in her game initially either. Miller said that she hit another low point when she first came back to volleyball due to the new limits to her game.
However, Miller was well versed in dealing with bad news by that point and eventually turned another negative into a positive.
“I've adapted to the changes and have just had to learn how to play my weaknesses with my strengths,” said Miller.
That attitude helped advance Miller's volleyball career to the collegiate level, an enormous accomplishment considering where she had come from.
The Diabetes Diagnosis
Unfortunately, Miller's health issues would crop up again, as fate saddled her with another scare this summer.
Miller was diagnosed with Type I Diabetes over the summer, a tough blow for anyone, but especially for Miller who still had to deal with her LSS.
The Diabetes diagnosis sent Miller into another low point.
“I found myself really angry and questioning why something else would happen since I feel like I've already been faced with a lot and overcome a lot,” said Miller.
Despite the anger, Miller found strength yet again in the support of her family and in her faith in God.
“God and my family have helped me realize that there's a reason whether or not we see it right now or ever see it,” said Miller.
Miller's family was also much more well prepared to help her with the Diabetes than with the LSS since Miller's brother Jonny—a former golfer at Concordia—had been diagnosed with Type I Diabetes when he was 13.
In addition, without her brother Jonny, Miller might not have been properly diagnosed in the first place.
Miller initially went to the hospital this summer for internal bleeding, but remained sick for a long time after that initial visit. By Miller's own estimation, she had lost at least four pints of blood by that point, but her doctor kept taking blood from her to try and figure out what was wrong after the original symptoms of internal bleeding had faded.
Eventually, Miller got diagnosed as a Type 2 Diabetic, but the same night she was diagnosed, Miller kept getting sicker despite now taking medication for being Type 2.
Fortunately, Miller had been staying with her parents while she was sick and that night her brother Jonny began to connect the dots. Jonny told his sister that she had all the signs of Type I Diabetes that he had had before he was diagnosed.
Jonny had a doctor's appointment the next day and described his sister's symptoms to his doctor at OHSU. Recognizing the severity of the situation, Jonny's doctor immediately cleared all of his appointments that day and told Jonny to get his sister in as soon as possible. Jonny obeyed and Miller came in, even sicker than before, and immediately got put on insulin. Jonny's doctor then properly diagnosed Miller as a Type I Diabetic.
The relief of being properly diagnosed only lasted so long though, as the Type I Diabetes once again threatened to end Miller's volleyball career.
“My first question when they told me I had Type I Diabetes wasn't 'what do I have to do now,' it was 'am I going to be able to play volleyball'” said Miller. “Fortunately, they were like 'yeah, you can play, but you have to prove to us that you can manage it without playing and then once you start playing, you have to show us you can manage it under those circumstances.'”
However, even with her doctors' blessings, Miller still had a lot to deal with in a short amount of time if she were going to be able to play. Consequently, Miller turned her brother for advice once again, as he had competed collegiately with Type I Diabetes well before Miller.
“Without Jonny, the process of being diagnosed this summer would not have been as smooth,” said Miller. “He's taught me a lot about how to manage it and still compete.”
With Jonny's help, Miller overcame the second major health scare in her life to continue playing the sport she loves.
Managing it
Miller's triumphs to return to the court have been astounding, but they have also come with the knowledge that playing with the different diseases is an ongoing process.
In addition to the LSS medicine putting her in a fog, Miller can also lose circulation in certain parts of her body during a match, as part of her Raynaud's.
Besides that, Miller now has to constantly check her blood sugar regularly as part of her Type I Diabetes.
If Miller's blood sugar drops too low, then she could pass out, and playing volleyball can have wild effects on her blood sugar.
“Athletes can go one of two ways in that exercising lowers your blood sugar, but if you're prone to high stress and high adrenaline, then that raises your blood sugar,” said Miller. “Typically when I'm playing, I start off really high from the adrenaline and the stress, but get pretty low near the end and then after the game I drop even more.”
So far, Miller has been able to manage her blood sugar pretty well. Miller says that she can usually feel when she's getting low, but still has a bag of glucose, juice, Gatorade and sugar nearby in case she gets low. Miller also has to have Glucagon shots near her in case of emergencies.
CU head volleyball coach
Melanie Hambelton as well as athletic trainers
Emily Kosderka and
Scott Crawford have also made it clear to Miller that she shouldn't push herself if she's feeling low.
Hambelton said that she's never had a player with Diabetes on her team, but has been more than willing to put in the work to keep Miller safe.
“It's been a learning process for us to know how much we can push her and for her to know how much she can push herself,” said Hambelton. “Melanie [Miller] is the type of person that would want to push through it when she's feeling off, but that's not a healthy thing for her to do.”
Someone Miller credits with pushing her in the right way has been Concordia assistant coach
Ray Nunn. Without Nunn, Miller says she might have given up volleyball after she had gone through an unpleasant redshirt freshman season at Western Oregon right out of high school. Miller transferred to Concordia after that year with the idea that she was done with volleyball, but Nunn called her and refused to let her quit.
Now, Miller quitting would seem unthinkable, as Hambelton says Miller has become a symbol of perseverance for her teammates.
“I'm really trying to teach these kids to fight,” said Hambelton. “ I want them to fight in every set, every practice, every match and to me Melanie [Miller] is the perfect example of a person who has fought through tough times and has come out really well with it.”
Miller has been happy to play that role for her teammates, but says she is more thankful for their understanding as she adjusts to her new condition. Miller said she was initially worried that her teammates might think she was just being lazy when she would have to sit out some drills in practice due to her health issues. Fortunately, that has never been the case.
“Their understanding has made the process a lot easier,” said Miller. “I don't think I thank them enough.”
Her teammates' understanding has also made it easier for Miller to talk about her struggles. For a long time, Miller said she had a tough time talking about her health issues, both because she'd get emotional when talking about it and because she didn't want people to feel sorry for her.
Now, she hopes talking about her issues can have a different effect on people.
“My goal is to just let other people or other athletes know that if you're determined, you can face challenges in your life and still do what you want to do,” said Miller. “For me, I feel like the more positive attitude I have about the situation, then the better I feel, the healthier I am.”
And with that attitude, who knows what else Miller might be able to overcome.