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Returning to life after chemo
March 22, 2017
I still have good and bad days. After all, my body is still fully recovering from the harsh treatment of my medical endeavours. I routinely see my integrated medicine doctor, continually take my vitamins and follow a diet of fresh and healthy foods. Supplying my body with the appropriate fuel is critical if I want to feel well. At times my knees will ache, and I will be exhausted from life in general, yet I have learned from my experience last year how to endure. I have discovered the perseverance and willpower within me and the importance of pushing on when times get rough. Knowing that I must not fall into the sedentary state I was chained to last year, I shall continue to push until my health troubles are behind me.
Perhaps the most important lesson I realized was the concept of fighting for what you want in life. I pretty much had every ounce of happiness stripped from my life, and I was living in the most basic state of survival. After a couple months of living this way, I realized that nothing will ever get better if I just wait around for it. There was a song that I listened to frequently during those months by the band called the Villagers. The song was called, “Nothing Arrived,” and one line constantly echoed within the inner workings of my mind. The line was,
“I waited for something, and something died
So I waited for nothing, and nothing arrived.”
Those 15 words rang true to my current life, and the notion that the world would magically whisk all the hardships of my life away. Instead, continuous days of nothing would in fact arrive, and this is a hard lesson to learn. You are the only person that can get the spark of life back, and when you find an inkling of a passion you must pursue it with every ounce of urgency you can muster. When I realized this fact, I started to get better. After a couple months of treatment and perseverance of my own willpower, the old Kristin was back.
So, here are my parting words. I hope you learned that no matter the struggles that life may throw at you, you must always persevere. Yes, that may be the most incredibly difficult task in the entire world, but life is full of countless beautiful things that are easily passed by without this perseverance. So go, find what you love dearly and never let go, for it shall bring a life of love, beauty and happiness. Trust me, it works.
My wisdom teeth made me chronically ill?
It felt like we were back to square one, and my mom spent hours researching, and talking to family members and friends. We had a friend that went through a similar situation with their daughter. She went to the Mayo Clinic, an extremely acclaimed clinic in Minnesota, and they diagnosed her with Juvenile Rheumatoid Arthritis and was put on a biologic, and it practically drove her insane.
She was being treated by some of the most renowned practitioners in the United States, and even there she was being taken advantage of. They were looking for an alternative route of medicine and stumbled across a homeopathic internal medicine doctor, that uses vitamins and natural treatments instead of typical pharmaceutical drugs. She went to this doctor, and they completely healed her from her previous state. When I heard this I wanted to pack my bags and fly out to Colorado immediately for treatment. However, my mom felt with a major Chiropractic college near our house, there must be an integrated medicine doctor somewhere in our area.
We had some luck when my Mom stumbled across Dr. Simon Yu of Prevention and Healing. When describing his practice Yu says, “Prevention and Healing clinic weaves traditional internal medicine with the highlighted use of alternative and complementary medicine to use the best each has to offer. The evaluation methods we use offer a glimpse into the body’s energy systems and biological terrain. They examine the “fitness” and climate of internal organs and systems from a unique perspective. Unlike conventional medicine, they uncover the informational clues necessary to determine the proper therapies-with the long-term goal of good health rather than mere elimination of disease. Good health transcends an immediate disorder to maximize the body’s psycho-neuro-endocrine immune system and reduce the possibility of serious disease over one’s lifetime.”
I truly felt we had found something. A glimmer of hope for my health and future emerged, so we booked an appointment. They took us later on that week, a dramatic change from the three-week wait at other doctors’ offices. On the Prevention and Healing website, it outlines the process Dr. Simon Yu uses to evaluate the causes of the chronic illness. He uses several tests and the process of Acupuncture Meridian Assessment (AMA) to localize the cause of the illness. AMA involves holding a cathode connected to a computer system while Yu takes another cathode and touches the meridian points on your hands and feet related to all of the systems functioning in your body.
By sending the current from the meridian point through your body to the receiving cathode in your hand, the computer registers the strength of the connection. If the system is functioning properly, the current runs right through. If the current is blocked, it is highly likely the system it is related to is compromised in some way. He believes by finding and treating the cause, the body heals itself instead of masking the symptoms with multiple drugs.
At my first visit, Yu tested the ph of my saliva, ordered blood tests for food allergies, and cut a hair sample for vitamin, minerals and metal levels testing. Those were sent off for lab work, but in the office, he completed an AMA that revealed I had a blocked meridian current for dental. With this revelation, Yu determined I had a dental infection in my wisdom teeth area. A panoramic xray of my jaw line confirmed this. He pointed out in the x ray that in my lower jaw, my wisdom teeth had already begun growing in towards the roots of my lower teeth and because they had nowhere to go, they were impacted and pockets of infection developed around the area.
It wasn’t because of JRA that I was sick all along, it was because I had been swallowing the infection repeatedly and it was making me ill. Poison was leeching into my system at all times of the day, and without the elimination of the infection I could have gotten sepsis. After the visit with Yu, one astounding realization plagued my mind.
I took chemo for nothing. I ruined my life for nothing. I lost my life for nothing.
Of course I was bitter, yet I knew that despite the speed bumps to my medical recovery, I had a new future awaiting me. Finally, a doctor who wanted to treat the cause of my illness instead of the symptoms. I could return back to my life again, and I truly had never been happier.
Within a few days, I visited an oral surgeon that confirmed Yu’s findings and my family and I decided it was time to have my wisdom teeth removed to clean out the infection. The surgery was an involved process that took a total of three separate surgeries to completely remove all of the infection. I was on strong antibiotics and antifungal medicines to clear the infection for good.
While healing through my surgeries, I followed up with Yu on my bloodwork and hair sample testing results. The tests determined that I am allergic to many of my favorite foods – all kinds of beans (including coffee- no more fancy lattes for me ): ), tuna, broccoli, cod, egg yolk, sesame, soy, garlic and spinach. Yu said that by removing these foods from my diet, the inflammation should settle down and I should begin to feel stronger.
The hair sample testing revealed I had an off the chart level of calcium and that the overload was building up in my joints because my body didn’t know how to rid it correctly in this excessive state. The calcium was causing my joint pain, not JRA. Dr. Yu prescribed some homeopathic drops and vitamins to help rid the calcium in my system. With eating clean and avoiding my allergy triggers, the drops and vitamins, it took me about two months to rebuild my strength, focus and stamina to be able to function like a normal person again. Within a few months of healing I was able to return to school, and properly start my sophomore year.
A patient drowning in pain killers, a doctor swimming in money
Something was wrong, and my mom had realized that. Each time I went back to my rheumatologist, I told them that I felt worse, and their response was a higher dosage of medications. There was a time when I was taking the equivalent to eight advil a day, on top of my chemo medication. They wanted to put me on something called a biologic, which would be a more intense version of the treatment that I was undergoing now. This wasn’t working, and my current state was evidence of that. How could an even more rigorous and damaging treatment fix my illness in any way? How could a doctor look at me and think,
“Hm, she looks very sick. Nothing we have tried has worked, she says she feels worse than when she walked in here. I think I will put her on a more severe treatment so she can sleep 24 hours of a day instead of 20!”
That’s what it seemed like my doctor’s logic was. Maybe they genuinely thought that I would feel better with this type of treatment, or maybe it was the incentive of getting a kickback for each medication prescribed. See, the pharmaceutical industry pays physicians for using their brand-name drugs. Thus, the more times they prescribe the drug, the more money they will get.
While the drug could actually help a handful of people, when the carrot of more money is dangling an inch away from a doctor’s nose, how could they not pass up the opportunity. A biologic is an extremely commercial drug, with an abundance of advertisements. I can guarantee that everyone has seen the commercial with Phil Mickelson promoting a biologic at least once.
An analysis by ProPublica says, “Many doctors get thousands of dollars — often in the form of “promotional payments” — to offer their patients unremarkable drugs that frequently exist in cheaper, more effective forms.” And the biologic that I was going to be placed on, Humira, is the seventh most commercially promoted drug in the entire pharmaceutical industry.
Bottom line, the pharmaceutical industry was taking advantage of my ailments in order to make a quick profit. Regardless of the fact that I was 15, and had an entire life ahead of me, they wanted to use my illness for money. That sickens me, and I myself was extremely sick as it is. Thus, we threw away the drugs poisoning my body and left.
A hard pill to swallow
This is where my questions were answered. It seemed like the tides parted and all the confusing “what ifs?” of the past few months fluttered away. I had an answer as to what was wrong with me, and my rheumatologist said I had “seronegative spondylosis,” or a type of arthritis that affects the joints and spine, yet does not show up in a blood test. Basically my immune system was in a state of hyperactivity, and it was attacking my joints and spine. My doctor prescribed a couple pain-killers for my joint pain and a chemotherapy drug in pill form which would break down my immune system preventing it from attacking my joints and organs.
Wow, chemo. Thats a hard pill to swallow, literally. As bleak as hearing you have an illness this severe may be, I was filled with a newfound determination. The months of me sleeping my life away were gone! I finally found out what was wrong, and we were on the way to fixing me. I was almost back to my life of painting, and dancing, and spending time with friends.
If only I had known that my health troubles had only just begun.
Minutes turned into hours, which blended with days, which wove into weeks and months until I was almost unknown to each waking second. Most of these seconds I spent asleep, what else should someone do while chemotherapy destroys the inner workings of your body? I spent months in this state, sleeping in my bed, to sleeping on my couch, watching a couple Netflix shows, and then returning to my bed. I know some may say, “All you did was sleep and watch T.V.? That sounds great.”
And my response is, it was fun not having the stress of a typical high school life. But, in this state, I didn’t have a life.
I was surviving not living.
The drugs should have just been attacking my body, but my spirit felt its assault just as much, if not more. When I got up I had nothing planned, and nothing to look forward too. The worst part was that just the thought of going back to society, to school, to life terrified me. It sent anxiety through my veins and I would exhaust myself with worry. I know I needed to go back to school, but I already missed two whole months. How was I supposed to catch up? I became so accustomed to this cadaverous state, and I couldn’t help but feel worse.
I Took Chemo for Nothing
After hearing I was diagnosed with juvenile rheumatoid arthritis, my doctor told me something that would continue to haunt my waking thoughts for months. They said I needed to “adjust to the new normal,” but nothing about my situation was normal. Arthritis at the age of 15 was not normal, the dosage of painkillers prescribed was not normal, not being able to leave my bed was not normal. Nothing about being chronically ill is normal, especially when you are misdiagnosed.
When thinking about my childhood, it seemed like I was never sick; I caught the occasional December flu bug, but I never fathomed the thought of having a chronic illness. I saw children in the St. Judes Children’s Research Hospital commercials struggling with failing health and my heart hurt for the children and families whose lives had been impacted by sickness, but the day my rheumatologist said that I was chronically ill, it really put it all in perspective.
It started in December of 2015. I was in eighth grade and my health started fading. It was barely noticeable at first, but when my attendance rate started crashing I knew that something had to be wrong. I went to my pediatrician every other week it felt like, and each time they gave the same diagnosis.
“You’re fine, you just have a virus. Rest, you will feel better.”
But no matter the hours I slept or didn’t, nothing seemed to make a difference. This trend continued throughout the summer, and slowly became a larger part of my life. My whole family took a trip to Alaska, and the whole time I just wanted to stay in bed. I was in one of the most breathtaking locations in the world, and I couldn’t bring myself to leave my room.
It was around this time that my joints started acting up. My knees would throb and swell, and I could hardly walk around without help from my mom. My fingers throbbed and I needed assistance to open a jar or twist a door knob. I stopped painting and dancing because my body ached so much that I could not move. Sometimes I would just lay in pain on my bedroom floor, because it was easier to lay there then walk to my bed or couch.
Nothing about being chronically ill is normal, especially when you are misdiagnosed.”
Sleep-filled days passed, as well as restless nights. My freshman year rolled around and we all wanted answers. My mom started researching my symptoms on Web MD and Google, scrolling through pages upon pages of diagnoses searching for something that resembled my symptoms. Though overwhelmed, she knew that there had to be answers somewhere, that regardless of what my pediatrician said, I did not just have a virus. We stumbled across a list of chronic illnesses, and my mom felt that juvenile arthritis sounded similar to what I was struggling with. So, we booked an appointment with a juvenile rheumatologist.
Something unexpected that we stumbled across was as a new patient was that at each practitioner, wait times were always a factor. We would attempt to get an appointment with a doctor or specialist and they would say, “Oh, we have an appointment available in three weeks. We can book you then.”
It felt like the severity of my situation was not even recognized all because I was a new patient. I was always put last on the wait list, regardless of the fact that my health was deteriorating. I started missing school regularly, and as a freshman that messed with the whole “build your GPA, get into a good school, live a happy life” plan. So, I tended to stress regularly. But, my health got to a point that my mom had to physically pull me out of bed every day, and walk me down the hall each morning. If I made it to school I sat in each class hardly processing a word. I would just sit at a desk, write some notes and await the 2:30 p.m. bell. I was at school, but my mind was hardly able to process a conversation. My memory was cloudy and my focus ability was that of a toddler. I got to a point where I could only write a few words of an essay until I gave up and took a nap. My grades were dropping as well as my attendance rate, but I couldn’t do anything about it.