Curious, passionate, resilient, focused, and brave; Shaina is carrying with her all that it means to be more than through her dedication to raising awareness amidst uncertainty, misdiagnoses, and seemingly insurmountable pain. Since fighting this disease, Shaina has been able to create a life for herself beyond these limitations by holding her family close, continuing to educate herself while working towards a degree, and finding hope, beauty, and simplicity in the little moments. The scary and often painful moments.
The moments that make us who we are today.
This is her story...
My Name is Shaina,
I have been diagnosed with Chronic Lyme Disease since January 2015.
Like many others, I was misdiagnosed for many months with Rheumatoid Arthritis, which allowed time for infection to grow much worse. In the past two years, I have been to countless doctors and tried multiple treatments, both western medicine and holistic. Because nothing for Lyme Disease is covered by insurance, we have spent over an overwhelming amount on medical bills. Some days the financial strain that this disease has put on my family seems to be just as great as the physical pain I endure. Asking for financial help during this process is very difficult and humbling for me.
I am an Industrial Design and Sustainability student at Pratt Institute, but have had to take a medical leave of absence in order to heal and attempt to find a way to pay the mounting medical bills. There are no words that can explain the pain I endure on a daily basis. There are days I cannot walk, because it feels as though my feet were smashed with a hammer. At times when I cannot text or open my pill bottles, because it feels like my hands are broken. Other times, I throw up unexpectedly, and fall asleep out of the blue. However, everyday is different, leaving only confusion, emptiness and pain. The pain and exhaustion is unbearable, but is it not more horrible that few understand what us Lymies go through? There were over 300,000 cases of Lyme Disease reported in 2015 according to the CDC (Centers For Disease Control + Prevention), more than any other infectious disease. Lyme Disease is known as the “Silent Epidemic” because it is not being talked about.
Being aware of people's disabilities means to look beyond the smile and sympathize with the pain they feel inside. It took me a long time to gain the courage to use a cane because why would a healthy looking 21 year old ever need one? Now, on some days, this cane allows me to walk and I am proud to use it. This has taught me that no one should be ashamed to use the help they need and that no one should judge someone who already feels alienated by a world built for those fully functional. I will not have to use this cane forever, but I will always be aware and care of others who need a little extra help, no matter what the reason.
Like so many others, I feel as if I suffer alone. Much of this is because most people do not understand the severity and complexity of this disease. There is no support, treatment protocol or cure. There is only pain and the dim light of hope that someday it will all go away. I fight this disease so I can take my life back and become the successful, happy person I always dreamt I'd be. I fight to bring awareness to the world so people will not suffer alone the way I have.
Chronic Lyme Disease is not a simple infection that is cured by a little Doxycycline. It is a disease that completely debilitates the body, mind, and soul. It also hurts those that have to watch their loved ones suffer, knowing that they’re helpless to do anything beyond lending emotional support. Lyme disease is not just something that happens to you, it defines you. It takes tremendous strength to persevere, but it is strength that could be put to so much better use being a functioning, happy member of society – which I pray will be someday soon.
The conversation of Lyme Disease that needs to be happening. I ask not just for financial assistance, but also for awareness. Having as many people as possible hear my story helps shine a light on Lyme disease. The thought of others silently suffering the way I have, hurts me more that this disease ever could.
We appreciate the love and support for all of the Lyme warriors out there! I would so appreciate you sharing this with others in order to reach as many people as possible.
My health has improved slowly but surely. The bad days are less bad, and the good days come more often. This battle is far from over, but for the first time, I can finally see the light at the end of the tunnel.
There is a Buddhist proverb that says,
“If you have a problem that can be fixed, then there is no use in worrying. If you have a problem that cannot be fixed, then there is no use in worrying.”
I do not worry anymore because I know that my health will be restored. In the next couple weeks, I will be beginning new treatment techniques as my body is now strong enough to handle more aggressive ways to killing those bugs! It is amazing how long it takes to treat Lyme as well the many co-infections and parasites that come with it, but the life lessons I learn everyday from this will only make me stronger in the end.