My Story

I am a single mother living with severe rheumatoid arthritis. I was diagnosed in 2010, at thirty years old, but have experienced symptoms since my early twenties. Rheumatoid arthritis is an autoimmune disease in which the body’s immune system- which normally protects its health by attacking foreign substances like bacteria and viruses- mistakenly attacks the joints, usually in the hands, feet, wrists, elbows, knees, and ankles, causing inflammation and joint damage. RA can also affect the cardiovascular and respiratory systems, damaging organs in these areas. It is a progressive disease, and currently there is no cure. Genetics and environmental factors played a role in my diagnosis. 

I have been taking methotrexate, a chemotherapy agent and immune system suppressant used to treat cancer, and autoimmune diseases, for almost seven years. In the beginning, I started with the lowest dose, and quickly worked my way up to the maximum allowed for RA patients. The side effects are brutal. Nausea, extreme fatigue, headaches, stomach-ache, vomiting, diarrhea, mouth sores, hair loss, and fevers. Not to mention the increased risk of infection, low white blood counts, heart problems, and possible liver disease, lung disease, lymphoma, and severe skin rashes. My body has never digested medicine well, and although methotrexate allows me to function and relieves some pain, I suffer from the side effects weekly. During what is referred to as a flare- an acute episode of intense pain and inflammation- I also take between 6,000mg-8,000mg of Ibuprofen every four hours, up to five days. I then suffer from additional side effects of that much Ibuprofen. My poor body is such a warrior.  

March of 2016, I had my lipid panel test done. This is a test that measures your total cholesterol, triglycerides, HDL (high-density lipoprotein) and LDL (low-density lipoprotein). I was in shock to learn that my total cholesterol was 274. That is too high! My doctor and I discussed my family history of high cholesterol, high blood pressure, and heart attacks. The combination of that, my poor diet, the long-term use of methotrexate, and my rheumatoid arthritis, was contributing factors to my high cholesterol. My doctor did not want to put me on statins- lipid-lowering medication- due to my age and health, and encouraged me to go on a predominantly plant-based diet. He also suggested low impact workouts including an elliptical machine, stretching, yoga, swimming, and tai chi.

I began my regimen the very next day. I ordered the cookbook, Forks Over Knives and dove into the plant-based world of eating. I cleaned out my refrigerator and pantry, and stocked them with organic fruits and vegetables, fresh fish, beans, herbs, and spices. I started taking fish oil supplements daily, and a natural cholesterol-lowering supplement called, CholestOff. I was given an elliptical machine as an early mother’s day gift, and began using it for thirty minutes a day. I only drank water and green tea, black tea occasionally, for a little boost. I did not consume any red meat, alcohol, refined sugar, or processed foods and I began training my brain to embrace this lifestyle change. Here is a chart of my cholesterol readings from last year. You can see I lowered my total cholesterol 72 points in 9 months. That is huge!

Total Cholesterol: March  274     July  248     December  202

Triglycerides: March  177     July  96     December  114

High-density Lipoprotein:  March  59     July  52     December  63

Low-density Lipoprotein: March  180     July  177     December  136

 

This is the technical, medical jargon that explains only a portion of what living with this disease is like. Here is my full story.

It was a Friday morning about 7:45, and my five-month-old son, woke me by screaming at the top of his lungs. I went into his room, turned on the light, and whispered, “good morning my love.” As I tried to scoop him up, I had no strength in my hands and they were burning in pain. I tried a second time with no luck. I started to panic and called my mom to come over right away.  Luckily she lives around the corner from me. On my fourth try, I was finally able to pick him up. With tears of confusion and fear gathering in the corners of my eyes, I held him tight.

I knew there was something wrong with my body, as this was the third instance this week. On Monday, I had severe right shoulder pain that caused me to lay awake all night. I couldn’t get comfortable and it felt like my shoulder was out of the socket. I hadn’t injured it, but thought maybe I tweaked it, by typing on my laptop, while lying on the floor. On Wednesday, my right ankle felt swollen and twisted.  Again, there was no injury to contribute to this pain. 

I scheduled an appointment with my doctor, and later that morning, he did a physical examination, ordered x-rays, and blood tests. He asked if rheumatoid arthritis or lupus ran in my family, and I wasn’t sure, so answered no. Since it was Friday, and my results would not be available until Monday, he asked me to come back first thing in the morning.

That was the longest weekend of my life. Waiting to hear if I would be diagnosed with a non curable disease, causing physical limitations and pain, destruction of my body, and possibly killing me, was basically like waiting to hear the confirmation of, You’re going to die, just very slowly and painfully. The mixture of thoughts that swirled rapidly in my head overwhelmed me. My first thought was, I can’t die. I need to be here for my son. My second thought was, I’ll fight it. I’m strong. My third thought was, I don’t want to be pitied or viewed as a disabled person. I hold huge pride in my independence.

My healthcare insurance allows me to view my medical records online including blood work. I started checking my results two hours after I had my blood drawn, and continued for the next twenty-four hours. As the results came in, my heart sank further and further. I researched each one on every medical website I could find, with all of them saying the same thing… I had rheumatoid arthritis.

My husband at the time, now my ex, told me not to worry and wait to see what the doctor says. Don’t worry? How was that even possible? I may not be a doctor, but I do know how to read. And what I just read gave me all sorts of things to worry about. Would I be able to take care of my son? Would I be able to work again? Would I be sick all the time? Would I have heart or lung problems? Would I be in a wheelchair in my late thirties? Would I be crippled in my forties? Would my family treat me differently? Would my friends still want to be my friend? Would my husband still love me and want me? Would I die?

Over the weekend, my family did their best to try to distract me, and if it wasn’t for my adorable son needing me every thirty seconds, I would have preferred to be by myself. As a natural-born introvert, I am most comfortable alone, and require that space to process my emotions. Instead, I did a lot of fake smiling and brushing off of the fact that my entire life was about to change. I was concerned that it was too much for my parents and made a point of being strong in front of them.

The few moments I was left alone, I spent reading about treatments for rheumatoid arthritis. I’m not sure what was more terrifying; the unbelievably long list of serious, sometimes fatal side effects of the pharmaceuticals used to manage the disease, or the fact that there was no treatment to cure the disease.

Sunday night, laying in bed, I went over all the times I felt pain in my body the past ten years. I was an ex competitive gymnast and dancer, so pain in my feet seemed normal. I was a manager at a bank for years, and spent many hours typing, so pain in my wrists and hands seemed common. At least, that’s what I thought. I never went to the doctor to confirm. I remembered my dad telling me about my grandfather. He had rheumatoid arthritis and was crippled within three years. So it did run in my family. I never met him as he died before I was born, but in this chilling moment, I felt connected to him. I tried to block images of me walking with a cane or not being able to drive. I wondered if I would lose my hair from the chemo treatment, or if the treatment would even work. My breathing became shallow and tightness appeared in my chest, classic symptoms of a panic attack.  Oh great, I thought. The last thing I need right now is something else to worry about.

Driving to my appointment, I told myself no matter what the doctor says, I would remain calm and not show any emotion. In my experience, showing emotion, other than happy, makes people uncomfortable. After arriving and being checked in, I sat in the room staring at all the human body posters. I read the names of joints, muscles, tissue, and examined how they all fit together. This was something new. I heard a knock on the door and my doctor proceeded to enter. He had a warm smile on his face and reached his hand out to shake mine. He asked me how my weekend was, while pulling up my medical records on the computer. He then dove right into the results of my blood work, confirming, I did in fact have rheumatoid arthritis. As much as I had prepared myself, it was still extremely difficult to hear those words. I felt the stinging in my eyes and my face flushed. I tried to focus on what he was saying, but I was distracted by his expression of sorrow. He’s not much older than me, and admitted it was hard for him to give me this diagnosis. He was impressed with my research on treatment and made a referral for me to see a rheumatologist. Within a week, I was officially diagnosed with severe rheumatoid arthritis and put on methotrexate, one of the more aggressive treatments.  A side effect of taking this drug triples my chances of getting lung cancer, and because cancer runs heavily in my family, this is a constant concern of mine. During the days, my mind inundated with medical terms and treatment doses, while at night, it fears side effects, cancer, and death.

The first few months of taking the methotrexate were the worst. My body was not used to this class of medication, and it made me extremely sick. I experienced a large portion of side effects, and asked my doctor if  I should continue taking it. He explained that it would take two to four months for my body to accept the drug, and for it to start relieving pain and reducing inflammation.

I remember one evening, I had taken my medication on an empty stomach. I had a bad pain day and my husband was working through the night. I made sure my son was fed, but I was too tired to cook for myself. I went to bed early, and with the nightlight glowing, sang my son a lullaby. I fell asleep shortly after. A couple of hours later, I woke up with intense stomach pain and felt hot and sweaty. When I put my left leg on the ground to get up, I had no feeling in it from the waist down, and ended up falling. Luckily, I did not hit my head. Confused by what just happened, I tried to get up and couldn’t. I was scared, but tried not to panic, and crawled on my elbows over to the nightstand. I grabbed my phone to either call my parents or 911. Just then, my son started crying. I still felt as though I was going to throw up any second, and wasn’t sure I could stand up yet, but I had to try. I took a deep breath, focused my energy on moving my leg, and stood up. I made it to the side of the bed, before vomiting all over it. While my son continued to cry, I quickly grabbed a towel and wiped my face. Light headed and weak, I sat on my bed, cradling my baby, with tears rolling down my cheeks. This was the first time, since being diagnosed, I not only felt alone, but realized I was alone. 

The numbness in my leg was not a side effect from the methotrexate, but from my scoliosis. I continued to have nighttime numbness for the following two weeks. Now, that I was aware of it, when I woke up for any reason at night, I consciously took my time, using the wall and any other furniture I could, to stabilize myself. The independent person I am, did not want anyone fussing over me, so I kept this to myself.

My mind lived in a state of shock for the rest of the year, and fight-or-flight was my response to everything. My marriage was falling apart, and although I sensed it, I couldn’t see it. Or maybe I just didn’t want to. I had a bad habit of putting the pressure of perfection on myself, and failing was never an option for me. My son became my focal point, and he brought me joy and happiness during this difficult time. As a water sign, cancer, I am an emotional soul, and even when I don’t want to feel anything, I always end up feeling something. This was the beginning of my depression.

I started becoming familiar with the ladies at the lab, where I got my blood work done every month. I would ask how their vacations were and what their kids were up to. They would compliment my hairstyle or nail polish, to avoid having to ask the dreaded question, “how are you?” My inflammation level dropped about three months after I started taking the pills, and I felt some relief. However, I started noticing more of my hair falling out in the shower and when I brushed it. I am not a vain person, but as a woman, I naturally identify myself with my hair. I wondered how much of it I would lose, and researched extensions and wigs on the internet. I also started experiencing painful mouth sores, that made eating undesirable. If it wasn’t for my mom, who constantly found creative ways to drop off food or take me out to eat, I would’ve withered away to nothing but a rack of bones. The headaches, stomach-aches, fatigue, and vomiting were all becoming a regular routine. I learned something incredible about our bodies… they can handle much more than we give them credit for.

What came as a surprise to me, was how my mind protected itself, by basically shutting down. I didn’t completely check out, but slowly started building walls in all areas of my life. Intuitively, I knew this was not good for me, but had no will power left to fight, especially with myself.

TO BE CONTINUED….. PART #2

 

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