Most who meet me for the first time often say, “You have rheumatoid arthritis? How is that possible? You look perfectly fine to me.” It could be my age or the smile I wear across my face that distracts people from my reality, but truth be told I am 30, I am 3 months pregnant and I do have Rheumatoid Arthritis.
Since we found out I was pregnant, my husband and I decided to move from South Texas to Albuquerque to start a new life for our family. My sister and her husband live in Albuquerque and invited us to move in until we got on our feet. (Yes, they’re pretty awesome people!) My husband and I took them up on their offer and within a week we had moved. Being pregnant with our first born, living in a new city and starting a new life all seemed too exciting, that was however, up until I realized I’d have to look for a new rheumatologist. Now I just keep thinking, “The quest, oh that goddamned quest!”
For most people changing doctors isn’t something to lose any sleep over, but for me, it can be. I’ve seen both sides of the coin and know better than to think all doctors are created equal. I don’t just mean how qualified they are as physicians, but how qualified they are as human beings. Anyone who has ever had a long-term disease knows exactly what I am talking about, but for those of you who don’t, I am referring to all the money-seeking, cold-hearted, inconsiderate doctors that you sometimes must go through before finally meeting the one, and by that I mean,The One With The Heart of Gold.
Back in Texas I was lucky enough to find “The One”, but finding him was everything but a walk in the park.
Although I was born with RA, my quest for diagnose and a physician first began when I was 14. When I was a child, I’d lay awake in the middle of the night punching my leg because the “new pain” made the horrible “dull pain” I felt in what I thought was my leg go away. I have now come to realize my leg pain was my knee in so much pain that it radiated all over my leg. Mom took me to several doctors, all of whom said: growing pains.
The pain would come and go, and stayed away for a few years until I was 14. It was so crazy because now it wasn’t just my legs, it was everything, but at different times. One day, I couldn’t get out of bed because the effort of getting up would cause unbearable pain on my shoulders. Next day, my knee was stuck in a bent position, and I couldn’t walk. One day my pain wasn’t so horrible, it was my hip, so I went to school. That pain persisted all week, the nurse finally told my mom to send me to the pediatrician or I couldn’t go back to school. They would pay for it, since we had no money; so we went to the doctor. The doctor asked if I was sexually active, to which I replied “ummm I’m only 14” and that really pissed her off, she kicked my mom out of the room and asked me again. I replied again that I wasn’t because I still thought of myself as a child (which I was, but I’ve come to learn that unfortunately, that has nothing to do with sex.) She was fuming and said that if I wouldn’t be honest with her, she couldn’t help, gave me ibuprofen and sent me packing.
By this time the random pains were getting worse and more frequent. Mom started to worry even more as she saw that I started deteriorating, so she took me to several doctors across the border which are the only doctors she could afford. Nobody knew what to say, “growing pains, depression, puberty, etc.” until finally one doctor said, “there’s definitely something wrong, I just don’t know what it is.” My mom’s sister got chronic thyroiditis (Hashimoto’s disease) when she was 14, so my mom and grandma started to panic that it was something like that. Grandma decided she couldn’t see me go through what her daughter had gone through as a child and talked to my mom about taking me to Mexico City to get treated in the same hospital as my aunt did. After all, they had helped her.
Once we got to Mexico, my aunt, the one with Chronic Thyroiditis, took us in her home and got to working. This woman is like a medical genius, she has no medical degree, but has been to enough doctors in her lifetime to know her way around doctors, hospitals and labs. Of course, in the process, she has made friends in the medical field as well. She kept taking me to one of her friends. A nice young doctor who I believe was genuinely trying to help, but had no idea what he was doing for the most part. He thought it could be RA, but my RA factor always came back negative, and I guess he’d never heard of someone having RA with a negative RA factor… they did so many different tests, I thought I’d run out of blood. NOTHING. Eventually, he decided I was depressed, by this time I couldn’t walk, eat, brush my hair, or even go to the restroom by myself. I was so angry. It made sense, my grandfather had passed away the year before and my dad two years before that, but my joints were swollen, red and in unbearable pain. All the doctor had to say about this was, “you’d be surprised of what your brain is capable of doing.” At this point I just bursted out crying because I knew I wasn’t depressed or crazy, and this man, like everyone before him was dismissing my pain. I must’ve been very heartbreaking in the way I cried, because after that, he told me he’d run tests one last time and if they came out negative I’d have to go see a psychologist or something, and if they were positive, then I’d be sent to a Rheumatologist. I think my body understood the ultimatum, because those labs came out with a positive RA factor. So off to a new doctor I went.
I was sent to an amazing research hospital in Mexico City, because most people in Mexico don’t have health insurance, and are too poor to afford medical care, this research hospital treats patients for close to no money at all with the understanding that they’re doing research on you. I didn’t care, as long as they fixed me, I was introduced to my new doctor. A Spanish lady with a heart of stone and a brilliant mind. Now that I think about it, that’s probably why she was in research, she didn’t have the patience for patients, much less a teenager. This lady got me through the worst part, out of a wheelchair and back in time for the next school year; but she broke my heart and my spirits in the meantime. She let me know quite early that I was doomed to a life in a wheelchair, she said she would try to keep me walking and agile for as long as she could but I would be bound to a wheelchair by the time I was 21. She wasn’t wrong, but I so didn’t want to hear this when I was 14.
I stayed with that doctor right up until I was 20; I thought I was doing great, except for the fact that I refused to do therapies and wear sensible shoes because I figured, I didn’t need everyday reminders of the fact that I’d be in a wheelchair by the time I was 21. By the time I turned 21, I was living on my own in Mexico City, had a good job, a boyfriend, and plans for the future. My life was pretty freaking awesome, until it wasn’t. My RA became surprisingly active all of a sudden, and in a matter of weeks, I couldn’t completely stretch out my legs, so walking was hard, painful and looked extremely awkward. After some heartbreak, and a lot of physical and emotional pain, I finally moved back to Texas where my mom found me my new rheumatologist.
I must admit, I was quite nervous about him, the last doctor I’d seen in the U.S. Had been a horrible lady, and I had an idea that American doctors would just want to take you for all you got because most people have insurance. I waited quite a while before I saw this doctor, by that time I was 21, and in fact bound to a wheelchair. After some X-Rays, he decided I needed total knee replacement surgery on both of my knees. I pretty much said he was crazy and that I didn’t want them cutting into me. There had to be something else we could do. He realized how young and scared and hurt I was, so he showed me my X-Rays next to the X-Rays of a healthy knee… I couldn’t even recognize my knees as knees, there was no more cartilage, and the bones had been rubbing against each other for so long, that they had taken completely different shapes. He said it was MY choice, but that if I didn’t have the surgery, I’d never walk again; and it had to be soon like in the next weeks because my muscles were starting to atrophy. He found me a great surgeon with a heart of gold who did an excellent job, and I’ve been walking around ever since. He earned my trust by putting himself in my position, and explaining things to me in a way I understood so we could keep moving forward. He always gives me all possible scenarios (not just the worst case scenarios), and is ok with me wanting to take control of my own health. After all, I’m the one who’s gonna have to live with the consequences of my decisions.
Today at 30, I know much more about my illness and well being than I did at 14. I know, for instance, what my physical strengths and limitations are. I know that I have little to no control over being sick or when and where I’m going to flare up and have a chronic episode, but most importantly I know that that I can chose which doctor I feel most comfortable with and that I don’t have to settle for a heartless one simply because they’re doctors and “doctors know best”. I know my body, I know my needs and limitations better than anyone, so despite what some may say, I too know what’s best for my body and what is best for my body doesn’t involve having a doctor who makes me feel like crap emotionally. I am not looking to make decisions based solely on how I feel, but I can make better decisions regarding my health when both my physician and I are involved whole heartedly in the decision making process.
I admit I am pretty scared about going through this exhausting process again, but if there is something this long and heart felt quest has taught me is that doctors with a heart of gold are not a myth. They are out there and they are healing more than just our health, they are healing our hopes and chances of a better life.