“Onset Upon a Time”
Introduction: My Rationale for an RA autobiography
Rheumatoid Arthritis onset stories are unique, of course. I’ve read many of them. But, I have never told my story. The thought of it is exhausting. Wasn’t it bad enough that I had to live it once?
But, the truth is, I know firsthand the value of RA stories. I read them as I searched for answers… and for hope. Over and over, I was amazed that other people had been where I was – and come through it. Reading onset stories helped me in numerous ways: I remember that it helped to know what I might expect next. When the next ridiculous thing would happen to me, instead of thinking I was crazy and saying, “Oh my God, what is this?” I might be able to say, “Oh no, I think I’ve read about this somewhere…”
Warning: This article is unique on the Rheumatoid Arthritis Warrior site. There are no jokes or intentional humor. It was a kind of torture for me since my tongue is always in my cheek. As I wrote this several months ago, I had to constantly erase my silly comments as I typed. I also left out many facts, even though they are still important, so that only the essential story skeleton remains. I wanted to present only the facts here in a way that could be useful to others who want to learn how Rheumatoid Arthritis begins. The rest of the RA Warrior site is full of reflections and reactions, of plans and pleas, of laughter and longings…
Table of Contents
Chapter 1: Coincidences: The Pre-RA RA
When I was 13 years old, I remember that suddenly my hands became stiff and I would bend them around and crack my knuckles to try to relieve the stiffness. It got worse. One morning, I awoke with my hands in fists. It was very difficult to unfold them. I had to pull on each finger to force it to open. Later in the day, the stiffness improved. I woke up this way for several weeks. I remember I became determined to be gentle with them and not pull them open or crack them anymore. Eventually, the morning stiffness left as mysteriously as it had come, but my finger joints continued to stick occasionally.
Stress that could trigger RA
Only now do I connect all that with Rheumatoid Arthritis since I know what RA is like. There’s another reason that I make the connection now: I have read that RA tends to appear after a trauma or stress of some kind. At that time, my parents were divorcing so I had moved into a smaller house with my mom. It wasn’t as nice a neighborhood. I had to change schools and get new friends. My dad moved a thousand miles away. Looking back, it was a sufficient stressor to initiate symptoms.
About that time my feet began to hurt all the time.
Another autoimmune disease
Then, when I was 15, I got a headache. It didn’t go away. After days of rest and aspirins, we saw a doctor. Ultimately, we saw lots of doctors. I had the “headache from hell” almost every day for nearly a whole year. My whole head hurt. I did not want to lift it up from a pillow. My mom took me for countless tests and I took just as many medicines.
After almost a year, we finally saw an endocrinologist. Radioactive x-rays in the Nuclear Medicine department of the military hospital finally revealed my abnormal thyroid. The diagnosis was one that was infrequently given in those days, especially to children: Hashimoto’s thyroiditis. Hashimoto’s is an autoimmune disease in which the thyroid is alternately over-active and under-active. Of course, treating my thyroid relieved my headache. About time, I thought. (Oops.)
Feet and shoulders
By age sixteen, the foot pain made it hard to work at my job selling shoes. I would take my own shoes off every chance I got –between customers or in the stock room. After I worked an eight hour day, I could barely walk the next day. But I was young and tough and I learned quickly how much people hate to hear complaints. I tried not to complain. My mom did take me to another doctor for my feet, but he was baffled.
When I was eighteen, I thought I had injured my left shoulder while weight lifting. That was the only explanation I could think of for the pain. It felt like I had torn something. At times, I could raise my arm, but lowering it was too painful. I would just use the opposite hand to hold my elbow and guide my opposite arm down. After a few days, it would stop hurting for a while.
A few weeks or months later, my shoulder would hurt. I would wake up one day and wonder why my right shoulder hurt. I’d say, “I thought it was the left shoulder. I always get confused.” Since both shoulders never hurt on the same day, I honestly never caught on for 20 years that it was both shoulders. Honestly.
Aside: What is obvious here is that I had learned to ignore physical pain to such a degree that I was unsure which joints were affected last. This is something I have observed is common in RA’ers. It’s ironic since they are often viewed as oversensitive.
The next coincidence was my hips. At age 25, I had my first child. When she was a few weeks old, I was walking down the hall and my leg just went out from under me. “Whoa,” I thought, “what was THAT?” I figured my hips must be loose as a leftover from the pregnancy hormones. Every few weeks, one of my hips would “go out” and I’d go down with a yelp of pain. Sometimes the left hip, sometimes the right hip – it was like a cycle every few weeks. But, after a few days of pain, I would feel normal for a while. It went on like that for about 15 years: feet, shoulders, and hips.
Over the next 15 years, I experienced dangerous highs and lows with the thyroid disease, and 2 back injuries left me confined to bed a few times. However, there were no new Rheumatoid Arthritis symptoms to tip me off about what was going on inside of me. A couple of times, I mentioned my various pains to a doctor and brought up the fact that my grandfather had had Rheumatoid Arthritis. I would ask, “Is there a test or something?” Only once, my doctor checked and found my ESR / sed rate normal, saying, “You have no worries.” I hoped she was right.
Chapter 2: Was Trauma a Trigger?
Childbirth and stress
The same summer that I gave birth to my 5th child, my husband changed jobs, and I had to move my family to a different county and buy a home at the peak of the housing bubble. With the birth, and the move, and the trials of the new job, my thyroid took a dive. People with Hashimoto’s often experience this post-partum slide anyway. Without enough thyroid hormone, I could not make enough milk for the baby. I was really upset about that. So was the pediatrician who kept calling my house requesting to weigh my son.
Thyroid gone haywire
It was an intensely stressful time. I have read that the stress could have been the trigger for my thyroid to go into a frenzy, like never before. It suddenly dumped high levels of thyroid hormone into my blood, causing my resting heart rate to be 120 beats per minute. After a week like that, my PCP doctor gave me a beta-blocker to slow it down.
For almost two weeks, my metabolism was so high that I did not sleep. I just did laundry and washed dishes at 3 a.m. I lost over 10 pounds during the first week while I ate extra calories to try to stop the hunger pain. I had to eat in the middle of the night to stop the sharp hunger pangs due to the rabid metabolism brought on by the high T-levels in my blood.
Hopping to a podiatrist
One weekend soon after the thyroid episode, I woke up and could not walk on my left foot. The joints at the base of the toes were extremely swollen. The pain was unbelievable. I debated going to a podiatrist. I was already going through so much. Facing a doctor is just one more thing… I could not walk, but I could still hop.
Finally, I decided to call around on Monday morning. I found someone who would see me that same day. I got the kids in the car and drove. Then, Doctor B. bound my foot to bring the joints back in line. My toes were jutting out in unnatural directions. He lectured me on better shoes and foot care. I kept asking him what caused this to happen.
The other foot and more
That night the foot pain made it hard to sleep. By the time I awoke, an amazing thing happened. The right foot was swollen now. It was even worse than the left one. The toes were twisted and bent into weird angles. I could no longer hop. I had to crawl. I cried. I said, “How am I supposed to do anything now?” Somehow, I got back to the podiatrist within a couple of days. He led me through the painful process of x-raying my feet and he checked my ESR/sed rate. We discussed steroid injections to bring the swelling down. My hesitation took me back to my grandfather. He had taken large doses of cortisone and suffered for it. The good doctor said he would insist on giving me injections if the swelling had not gone down in another week.
However, by the next week, we had other things to consider. The pain had spread to other joints. While he was puzzled by a normal ESR/sed rate, he thought I might consider a rheumatologist. “What’s a rheumatologist?” I wondered.
Chapter 3: My World on My Shoulders
Refusing to dance
While my feet remained swollen, I could not wear any shoes. I took adjustable Velcro sandals and loosened them up all the way. My husband’s office held a St. Patrick’s Day dance and I had to attend. I sat and ate the meal, making conversation, but I refused to dance. I still could not really walk; I just kind of shuffled from one seat to the next one with my wrapped and swollen feet.
Unbelievably, people goaded me to dance. This was the first time I experienced the delusional response many people have when they are confronted with someone who has RA. I didn’t even know I had Rheumatoid Arthritis yet. I only knew I couldn’t walk, and people acted like that was not a valid reason to refuse to dance.
Pain like childbirth
One morning, about a week later, I woke up at 2 a.m. wondering how I could have dislocated my shoulder in my sleep. There are no words that I can find to describe how great the pain was. I have a very high tolerance for pain. I’ve given birth 5 times without so much as a Tylenol. After the 29-hour first birth, I labored quietly with each of the 4 others because I did not like to be judged as weak. I also have been bedridden for weeks with bulging discs in my spine. The shoulder pain was of similar degree to those experiences. Tears rolled down my cheeks. I tried not to move.
The pain grew as minutes passed. Somehow, I struggled to the bathroom to swallow two Advil. Back in my bed I practiced deep breathing relaxation techniques that I had used to get me through the long labors. The pain continued to increase, so I got back to the bathroom to get two more Advil. It did not help.
By three a.m., an unbelievable thing happened. The other shoulder hurt the same as the first. Now, I wanted to go to the emergency room. What on earth could be wrong with me? When the second shoulder became affected, I knew it was not an injury. Something systemic was wrong. Could this be related to my feet? I wanted to try to wait a couple of hours for the sake of my family, but I wanted to go to the emergency room.
When he woke up, my husband didn’t like the emergency room idea and I didn’t like feeling like a nuisance. I continued to take the four Advil every four hours, but I was pretty useless. I could not move my arms at all, so I couldn’t do much. My shoulders were frozen stiff and extremely weak. I could not dress or bathe.
For several days, I was helpless. Eventually, the pain lessened a little; and I perhaps I adjusted to it. However, my shoulders remained completely disabled for many months, and it would be months before I would be able to do something difficult like blow-dry my hair.
Chapter 4: Perfectly Healthy
What the doctor says
There is another reason that I was slightly less distressed by my shoulders: I was distracted by my knees. The knees followed the same pattern as the feet and the shoulders had. For several days, I could not move them at all. I never missed my Advil dose: four tablets every four hours.
By now, I began trying hard to get a doctor to listen. I finally got back in to see the primary care physician assigned by my HMO. The agonizing car ride and two hour wait were not worth what I received. After a brief examination, I got to hear him tell my husband, “Pain cannot migrate like this. Your wife is perfectly healthy.” He did not even address me.
By this point, my podiatrist friend had planted the idea in my mind of a rheumatologist. I had only a vague notion of what that meant. So, I started learning. I began reading online about rheumatology. I got library books. There has been a lot written; I’m still reading. It took countless hours of phone calls and petitions to get the primary care provider to refer me to a rheumatologist. Then I had to wait weeks for the “new patient” appointment.
Bright red rash
Meanwhile, my “perfect health” became more and more peculiar. The inside of my right elbow became bright red – redder than a Coke can. It also stung, especially when touched. The redness spread quickly up and down so that it covered that side of my arm. I hoped it must be some kind of allergic reaction or insect bite. After a week, it became leathery and brownish as the skin cells died. Then it quickly flaked away. But before the scar of it could fade completely, the redness returned to the inside elbow. Then, it spread out again. However, it was on both arms this time. (This cycle lasted for several months, until I was well established on DMARDs.)
Flushing bright red
My skin is the naturally olive-toned kind which doesn’t usually blush or sunburn. But one day, my face felt hot and turned bright red. Actually, my whole head looked red – my ears and neck, too. Like the rashes, the flushing would appear suddenly and disappear just as mysteriously. And like the rashes, it kept coming back until I had been on the DMARDs for awhile.
Eventually, the day of my rheumatology appointment came. I drove myself, even though my feet were still pretty worthless. I had my kids with me. On the way there, I had a fender bender which crumpled the hood of my minivan. But, finally, we were going to get answers, I thought.
During the appointment, Doctor A. never examined me or made eye contact with me. I did not get to explain what my symptoms were. He never looked up from his laptop, but he did hand me a lab slip as he showed me to the door. His staff made an appointment for me to come back in a month and a nurse said, “We’ll call you if the labs show anything.”
Chapter 5: The Wrong Answer
The doctor’s office never called. Since they had not found an answer in my blood, I continued to search for one myself. If it’s not Rheumatoid Arthritis, I would find out what it could be. I read about every possible non-RA condition which could cause my symptoms. I printed pages from medical journals and pored over them with my highlighter for hours. Then, I would go back online and cross reference every new question which was raised. I tried to use a process of elimination to narrow down possibilities of what could be causing my sudden disability.
Meanwhile, both of my wrists became disabled. I learned a lot about physiology from my wrists: apparently, you cannot move anything without moving your wrists. You can’t move a finger or your neck or raise an eyebrow without feeling it in your wrists. I would usually deal with the incredible pain by immobilizing the joint – and of course, with my Advil. I could not find a way to immobilize my wrists, however. Those were two horrendous weeks with my wrists.
Back to the rheumy
My head was swimming with questions as the month ended and I headed back to the rheumatologist. I wondered what was next since they did not call; meaning the Rheumatoid Arthritis test was negative. My kids were with me, as always. Two of them came with me into the exam room.
Dr. A. came in and sat down without making eye contact. He looked at his laptop. He handed me some faded photocopies, and said, “You better read these, sign them, and bring them back. Then, I’ll write you a prescription.” (Later, I read the pages. They had typos and grammar errors. They described various DMARDs and signing them removed him from responsibility for any side effects that his patients experienced. He did not recommend Biologics to me.)
“Wait, what do I have? I don’t have Rheumatoid Arthritis, right? No one called me.”
He retorted, “Look, you better get used to the idea.”
I stumbled over my words, “My baby – will I have to stop nursing him?”
“Look, he doesn’t need that anyway. You’re just spoiling him. He has you wrapped around his finger.” His tone of voice was mocking and condemning. As he walked toward the door, questions were still pouring out of my mouth. He did not answer any of them. I wanted to know what RA is and what my options were…
Chapter 6: Finally, Help
A good doctor
I saw the kind podiatrist one more time about my feet. He said he would work to help me get in to see a better rheumatologist. It took about a month to get in to Dr. K (whose practice was full; not taking new patients) and then two more months to make insurance changes so that we could get coverage for another rheumatologist. The first rheumatologist had been the only one on our insurance plan. Changing insurance was the only way to change doctors.
The difference was greater than night and day. First, I saw Nurse N. She gently helped me stand up and brought me to an exam room. She carried my bag since my daughter couldn’t come back with me. Then the doctor listened to me tell a few of my symptoms and we talked about all of the different tests I would need to undergo before starting treatment. The doctor even drew pictures to explain how Biologics work.
Doctor K. was sympathetic to my feelings of being a new mother having to wean a baby in order to begin chemo-type drugs. I was told I would have to take birth control pills. It was a flood of unwelcome change. But they were kind and that helped. When finished examining me, the doctor insisted upon putting my shoes back on for me.
The rheumatologist explained that there is now more hope for people with Rheumatoid Arthritis and how the American College of Rheumatology is saying that it is increasingly clear that treatment must be early and aggressive.
Chapter 7: Symmetrical Dominoes
By the time I saw Dr. K., I had symptoms of Rheumatoid Arthritis in over 20 joints, always completely symmetrical. I was not able to dress or bathe without help. I could not care for myself or do work. They asked me to consider taking prednisone for a short term. I filled the prescription, but again, my grandfather’s RA was on my mind and he was the primary reason for my decision not to take it. The steroids stayed in the medicine cabinet because I remembered how he used to talk about how they had injured him.
Medication helped some
However, I did use some other very powerful medications. I am so grateful that I could get insurance coverage and good medical advice which enabled me to begin using the best known disease-modifying drugs as early as possible. It was a lot to learn, but Rheumatoid Arthritis is a disease which requires continual education. One thing I had to learn was how to manage the side effects of the medications.
I could gradually do more things. I still do everything with pain, but over the 3 ½ years on the drugs, I have partial strength in most joints. However, the medicines have not cured the Rheumatoid Arthritis or prevented it from spreading to every joint.
RA is not stopped
More of my joints continued to be affected by the RA. It was like dominoes arranged in a long line. One would fall, and the next was inevitable. Since one side of me is a mirror image of the other, I call the process “Symmetrical Dominoes.”
One joint at a time, I became more and more disabled. One joint did not heal when a new one was affected. It remained weakened and very susceptible to pain (“tender”). No one I knew understood what was happening to me. I would not have either, if I had not lived it. Therefore, I learned quickly to be very private about RA.
Trying to ignores less painful symptoms
Other symptoms of Rheumatoid Arthritis were plaguing me also. I tried to ignore the symptoms I thought were less serious in order to deal with the ones which I felt threatened me more. I tried to ignore RA fatigue. I would do more than I thought I could every day – even though I felt like I’d been hit by a bus – until I could not move at all. How can I describe the RA weakness in the morning? It is like being run over by a long freight train. There were also swollen and painful veins; eye problems; irregular blood tests showing increasing deficiencies; fevers; irregular MRI’s and scans; perpetual laryngitis; nausea and lack of appetite; neuropathies; and breathing difficulties (due to vocal cord immobilization).
I remember wondering to myself for a couple of months, “What will I do if it takes my hands?” Frequently, hands are crippled first, I’ve read. It was six months since my shoulders were first taken down, when the stiff popping in each little finger joint began, only in my right hand. And then the pain and weakness came. A few days later, the other hand followed suit, a few joints at a time. For weeks, my hands were worthless to me.
The other domino I remember fearing was that Rheumatoid Arthritis would get my jaw. Once, early in the process, I read online about RA jaw pain. My daughter and I read the story together. I cried out to her, “You mean I won’t even EAT?” Well, one day, I did wake up to find that it did get my jaw. The pain was on both sides of my jaw, of course, and for a few days it was so stiff I could hardly move it. However, most of the time, I can eat most things now. I do have trouble with things like hamburgers or corn on the cob. Dental cleanings can be awkward, to say the least. I am fairly certain that all of the dominoes have fallen now. However, I have been convinced of that before. And I was wrong.
Chapter 8: Conclusion – A Beginning
Being shy about invisible illnesses
I have written this story for the benefit of those who come after me. I dedicate it to those who came before me whose stories helped me so much. It was difficult to relive these events; mostly, I try to forget them.
I have attempted to keep to the facts. It was difficult to leave out natural reactions of shock, outrage, sadness, or shame. I even left out humor, which I quite naturally add to all I do. There is so much more to tell.
Nearly 30 years with an invisible autoimmune disease has left me extremely shy about sharing medical information. I also tend to avoid any medical treatment or discussion that is not absolutely necessary because when you are diagnosed with invisible illnesses like thyroid disease or Rheumatoid Arthritis, many people tend to see you as a malingerer, no matter what you do. It is as if RA is not a legitimate problem because it is not evident to others by a casual glance. However, even if nearly everyone I know is in denial, I cannot be.
When you can no longer function, positive thinking does not will it away.
Being sick is not who I am. I ache to be able to do the things I did before RA. I desire to have people at least know me as the person who did those things. That person is still inside of me. There are brief moments when I think, “I feel ok. It wasn’t really anything after all. I can do anything I want to do.” And then I inadvertently move any joint and am brought back to this hard reality.
Yes, I guess Rheumatoid Arthritis has taken my old life away. But, I do also have a new life. Every day, I am learning. Every day I am growing more patient and sympathetic. I am more aware of the value of every moment.
I have always tended to just accept pain like I did during childbirth; it is inevitable and inexplicable. At one appointment with the compassionate Dr. K., I was asked where I hurt. I shrugged and sighed as always, naming a few joints. Then I said, “And my heels scream, but that’s not RA. It’s just me. I’ve always had that pain.” After examining my heels, the doctor offered this explanation, “You absolutely have RA there.”
“Oh, I guess the old me had RA too,” I smiled.