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8 Dr. Tanya Quinones-Santiago
Dr. Tanya Q uinones-S antiago A r t i c l e
Ever since I can remember, I have always wanted to help people in such a way that I would have a lasting impact on their lives. Growing up as a pastor’s kid I was immersed in service—service to God, family, the church community, and the world as a whole. If you ask any child what he or she wants to be when they grow up you may hear a plethora of careers ranging from lawyer to doctor to firefighter and so forth. But rarely is it the case that what a child proclaims as a “dream job” actually turns out to be the profession they end up in. I happen to be one of those unique cases. And what is that you ask, a doctor! I have always had a strong desire to impact the health, well-being, and quality of life of those around me. You can say that I was destined to be of service, but never did I imagine that my own life and health experiences would be of service to others.
It was my senior year of high school, and I was so excited because I was one of eight students in the city to be selected into the medical careers program. This program allotted for half of the day spent at your high school and the other half at the local hospital studying anatomy & physiology, pathologies, shadowing doctors and surgeons, and getting an inside look as to what medical school and a career as a doctor would look like. And I was in Heaven! The experience made my desire to become a doctor stronger. And during this time I had decided I wanted to be a pediatric orthopedic surgeon. One thing about me, if I set a goal I will not stop until I achieve it! During the final semester of my high school career, I started to notice strange symptoms occurring in my body. I was fatigued all of the time, no matter how much sleep I got. My fingers and toes would go numb and my joints ached. During that time, we were studying autoimmune diseases and I learned about lupus. The more I learned the more I thought “I may have this.” So, I asked my mom to schedule an appointment with a rheumatologist, and she did. I let the doctor know that I thought I had lupus, and he looked at me and said he would run tests but that I looked healthy. he told me that every marker that they look for in a person with lupus was positive.
So, there it was, I was diagnosed with lupus and Raynaud’s phenomenon, given a prescription, and sent on my way. I knew at that point I would not be able to achieve my dream of being a surgeon, you can’t cut if your fingers turn numb. But that did not stop me from becoming a doctor. I went on living my life like a “normal person.” I had flare-ups but kept going as if nothing was wrong with me.
At that time, I did not know that a larger percentage of people living with lupus are of minority descent. I am Puerto Rican, but luckily I had access to good medical care. Many minorities do not have this luxury. And even with my good care I did not get appropriate lupus education. I do not feel that was due to me being a minority, but more to the fact that doctors no longer have the time they used to have to speak with patients. Which is why I decided to become a Doctor of Physical Therapy as it would allow me a longer time to really treat and have a more hands on approach
to patient/client management. Throughout college and medical school, I took my medication but did not live as though I had lupus. And that was my greatest downfall.
As I moved into my professional career as a Doctor of Physical Therapy, I lacked the ability to ignore my lupus symptoms as I did throughout my college career. Treating patients for eight hours, I would come home to barely make it to the couch to crash. My hands and face were swollen, joints were painful, I couldn’t make a fist, and the ability to maintain my alertness had started to diminish drastically. I was no longer able to hide my symptoms, though at the time I did not realize that that was what I was doing. I mean, I walked for lupus every year, I participated in Lupus Foundation events, I was “involved.” But I did not live my life as a person living with lupus should. At that time my health started to spin out of control. I was on over 20 different prescription medications, many of which were just to treat the side effects of other medications. I really did not have a medical team, as I did not realize the importance of your physicians communicating with each other. It took a life-threatening pulmonary embolism in my 20’s to cause me to take a long look at my health and what needed to change.
In 2011, my husband and I decided to move to Florida. Unlike most people with lupus, my body actually responds better in a hot environment. However, the stress of my job, lack of a good medical team, and pushing myself too hard kept me in a constant flare. Even with dietary changes I just couldn’t seem to get myself on track. Eventually my husband and I decided we wanted to start a family. We went through all of the appropriate specialists and got the green light.
In late 2013, I immediately became pregnant. I am sad to say I don’t remember any of it. My body began to see the baby as a threat and my lupus went into full on attack mode. I ended up hospitalized, had a stroke, couldn’t speak or walk, weighed less than 80 pounds, and I couldn’t even recognize my husband. I started to have seizures due to the scarring from the stroke. Finally, after 60 days in ICU they did a D&C and I immediately started to improve. However, I had a very long road to recovery, not only physically but mentally and emotionally as well.
I lost a significant amount of memory, we lost our son, and my husband had to make me fall in love with him all over again, because he felt like a stranger to me.
I began to shift my perspective and take a more active role in my healthcare. If I could talk to my 18-year-old self, there is much I would educate myself on to better equip myself of the challenges I would encounter on a daily basis in my journey with lupus. There are 3 key points that I would emphasize:
1. Treat yourself as someone “living with lupus” - It is ok to allow yourself time to rest when your body needs it. Take that nap if you know you have plans later in the evening. Don’t “stack” your day with things to do, you will get things done.
2. Build your dream team - As a patient, it is up to you to build a team of medical professionals that are right for you! And that means it’s ok to “fire” a doctor if he/she is not a fit for you. These relationships are so very important to manage your entire body as lupus affects all aspects of your body that multiple specialists are required to be as healthy as possible. So it is important that you feel comfortable with all members of your team and they act as a team would.
3. Educate yourself - You are your biggest advocate and no one knows you better than yourself. Don’t leave your health solely in the hands of someone else,
empower yourself and take control over your health.
If I had done these 3 things at the time of my diagnosis I would be in a completely different place and may have been able to avoid many life-threatening situations. But the important thing is that I realized this and know them now, and I practice them on a daily basis.
Today, I am not only living with lupus, but I am also living with epilepsy. I am happy to say that due to the changes I have made mentally and with the key points above I have been in remission with lupus and am able to manage it with counseling, diet and exercise, mindfulness, the strong support of my husband, and most importantly treating myself as I should. And through all my struggles, one of the hardest things is the fact that people tend to disregard any symptoms that I may have because they say, “well you don’t look sick.” This is a huge misconception our society has, the fact that people believe your symptoms have to be visible to be real. This cannot be further from the truth. Anyone that finds out that I live with lupus and epilepsy cannot believe it. I have learned to take this as an opportunity to educate others and advocate for the millions of people who feel the way I feel on a daily basis.
I truly believe that all of the battles I have fought through and made it out the other side of, beaten and worn, were for a purpose. My life was spared so that I could use my story to impact the lives of others. In my profession, I notice a huge difference in the way I view and treat my patients. I make a conscious effort to not prejudge someone for how they look because I know what it is like to look “normal” but feel like every bone in your body is breaking. My dad told me that what I do is truly a ministry. And now I can actually feel it. I can connect with people on a different level, and this allows me to develop a higher level of trust with my patients.
In my heart I feel that everything happens for a reason. I have these ailments, but I also have the ability to utilize them for good. I became more involved with the Lupus Foundation of America, Greater Ohio Chapter, and the opportunity to educate and impact lives has grown tenfold! Sharing my story, my hiccups, my defeats and comebacks—there is no greater feeling than knowing that I can have an impact on someone else’s life. And that is really how I push forward now. I am happy to report my lupus has been under control for almost 4 years. And the main factor that has impacted this is changing my mindset. The power of the mind is immense. Learning how to tap into that power can change your life, I know because
it has changed mine. I am now proud to say that I am a survivor and I will never stop finding a way to win. And the survivor in me has been able to come full circle and fulfill the destiny I felt as a young child - to be of service to others and impact the quality of life of those around me.
Systemic lupus erythematosus (SLE) is an autoimmune disease that disproportionately affects minority populations. Estimates of SLE mortality by race and ethnicity are lacking, particularly for Asian and Hispanic/ Latino persons. A recent study reports that the mortality among Asian persons with SLE is four times higher, and among Hispanic/Latina females with SLE mortality is six times higher than that of their counterparts in the general population. This is why it is vital to ensure the coordination of robust care models between primary care providers and rheumatologists to ensure people with SLE receive a timely diagnosis and appropriate treatments that might help address SLE-associated mortality. As a community, we must help one another and talk more about lupus and help others understand the importance of lupus awareness and education. By simply talking and sharing your lupus story you could potentially help others to be better self-advocate to take a charge of their life and live well with a chronic illness.
