Alicia Held – Person of the Month – April 2017
The person of the month for April, 2017 is Alicia Held. Alicia is a warrior who continues to fight and show true resilience, tenacity, and strength. She is an amazing inspiration to us all! Despite the fact that she continues to battle health issues, Alicia has the most amazing attitude and lives life with such optimism. Alicia has graced The EPIC Foundation by playing multiple vital roles including sitting on the Executive Board and as the Director of Mental Health and Case Management Services. She has the incredible task of developing and maintaining protocols for our support groups in every state for chronically ill patients and also support groups for caregivers. She leads a team of committed volunteers across the country. We are thrilled to honor her as person of the month:
Alicia Held lives in Tucson, Arizona with her husband and teen daughter, 2 dogs and their new kitten. Alicia really enjoys having time to volunteer with multiple charities as well as to be there for her daughter who goes to online high school at home. And although Alicia is thankful for these opportunities, this is definitely not how she ever imagined her life turning out.
Alicia was a skinny, tomboy of a kid. She loved to ride her bike, play outdoors, and get dirty. She was always moving, except when she was reading; she loved to read. Alicia was a competitive swimmer, and could be found in a pool year round in her hometown of Antioch, California. She was a healthy kid living a normal childhood without any problems. Even when she started getting headaches, having GI, and female issues as a middle schooler, she could never have imagined that those were the first signs that something was seriously wrong, something that would change her life forever.
A few years later when Alicia started college she weighed 110 pounds. She gained 30 pounds her first year of college, and attributed it to the “Freshman Fifteen”. Over the next few years she noticed that her muscles were getting weaker, it was harder to do the athletic things she had always done. Even walking across campus became tiring. She also was getting sick a lot more often, but she attributed this to being in a new environment with people from all over the country; the weight gain continued too. But then in her Junior year everything changed. She started having episodes of not being able to sleep for 2 or 3 days in a row, and feeling anxious and full of energy, followed by days where she could hardly get out of bed, where she felt like she was walking through cement the whole day. She went to the doctor, and they did some tests. Everything came back fine, they said she needed to lose some weight, exercise more, and see a counselor (this would become a refrain she would hear often over the next 8 years). She took their advice though and saw a counselor. When she described what was going on, all my physical symptoms, and the sleep issues, and anxiety, they said it was a classic case of Bipolar Disorder. (This diagnosis would haunt her for years!) She was put on multiple psychotropic medications over the next few years which either had no effects on what was happening in my body or made things much worse. It was a very difficult couple of years for her.
Alicia moved to Arizona, where her parents lived, after graduating college. She pursued a Master’s Degree in Social Work at Arizona State University, and worked full-time while going to school. Interestingly enough, Alicia actually started to feel better. She had more energy even though she was working long hours, and she even lost about 30 lbs, from the 210 lbs she weighed when she finished college. Alicia graduated with her Master’s and worked in child welfare, and as a pediatric medical social worker. Alicia Really loved her job, but after a few years she started of thinking about going to medical school; something that she had put off after college due to her health. Alicia applied to medical school and was accepted to the University of Arizona’s program. She was extremely excited to start medical school, but sadly not long after classes began her strange medical symptoms returned with a vengeance, including some new symptoms showing up. After 2 years of great effort Alicia finally had to take a leave of absence from medical school for her health, and sadly she never got to return. Things started going downhill more quickly for Alicia, she was unable to get a job, but she was able to put her medical knowledge to work for her figuring out what was wrong.
Alicia determined that her symptoms met all the criteria of Cushing’s Disease, and she started researching diligently. Eventually she came upon a group of patient’s online. Alicia credits this site and these people with saving her life. On their recommendation, Alicia went to see a Cushing’s specialist. Where all the other doctors had been dismissive of Alicia’s symptoms and blamed them on the mental illness she was diagnosed with in college, this doctor actually listened, and believed that Cushing’s probably was the root of all her problems, and had likely started all the way back in middle school. After a year and a half of intensive testing, Alicia was finally officially diagnosed with Cushing’s and cleared to have a surgery where doctors would go in through her nose and remove the tumor on her pituitary gland causing all of the problems.
Alicia was so excited to finally have an official diagnosis and a plan, that she was filled with hope that this surgery would give her her life back. Alicia had a transsphenoidal pituitary tumor removal on April 7th, 2010. After Alicia returned home to Arizona she expected her life to get back on track. She began losing weight after surgery, but her other symptoms were slower to resolve. Alicia was still unable to go to work, so she made the difficult decision to move in with her parents who were living in Oklahoma at the time. This was an extremely difficult time in Alicia’s life, but a few months after moving in with her parents Alicia met the man who would eventually be her husband, and his beautiful daughter!
Alicia moved in with her husband in Texas. And over the past year it had become quite apparent that all of her Cushing’s symptoms had returned. Alicia began testing again, and eventually started taking medication to try to control her symptoms. In 2013, Alicia got married, and less than a year later was diagnosed with a recurrence of Cushing’s Disease and cleared to have a bilateral adrenalectomy (BLA). After the BLA Alicia felt no relief from any of her symptoms at all, and continues to test and look for a cure to this day. Throughout, all of her health issues her parents, husband, and child remained firmly by her side, and Alicia credits her faith in helping her get through the especially bad days. Alicia is very proud now to be working with the EPIC Foundation, and giving back to a community who has given so much to her. If Alicia could share one piece of advice it would be what she has lived her life by: “You cannot control disease, or whether your body works or not. You do not get a choice about being sick, but you do get a choice each day on what kind of attitude you have and how you will face the world. Always choose happiness, chronic illness is miserable enough without adding to it.”
The EPIC Foundation is grateful to have such an amazing person as part of our EPIC family and we are proud to now announce her as someone we want to give special honor to! Our person of the month: Alicia Held!