Ever since I was diagnosed with rheumatoid arthritis in the spring of 2014, I have been tempted to place a semi-humorous advertisement on Craig’s List: “Free to a Good Home: Newly diagnosed Rheumatoid Arthritis. Actually free to any home, good or not, I won’t be too picky.”
My daughter, Tara, was born in 1983 when I was 27 and I breast-fed her for a year. After I put her directly on a sippy cup after her 1st birthday, I then began to gain weight, a little bit here, a little bit there.
My hands and my fingers suddenly blew up, though, like sausages. My feet and toes did the same thing. I went from a ring size of 6 1/2 when I was married at the age of 21 to a ring size of 11 by the time I was 40 in 1990. A ring size of 11 is common for men, but not at all common for most women.
My feet were still the same length but the width of them dramatically increased from a 6 1/2 Medium to a WWWW or EEEE size. I began to call them my “Un-Hairy Hobbit Feet”.
I was ashamed of my thickening hands and feet. I just assumed that they were like that because I had gained some weight but I knew other women who were much heavier than me in their 30’s and 40’s but their hands and feet had not ballooned up like mine had done.
So I joked about them, hiding my shame and my disgust behind my humor.
Another weird thing that began to happen after I had had Tara is that any little illness, a cold or the flu, would knock me flat for days.
Every normal person would recover from a cold in 3-4 days but not me. It would take me over two weeks to recover. And as soon as I would recover from one cold, I would come down with another one.
This was becoming a noticeable problem to my family, my friends, and to my employers. I was frequently asked. “Why are you constantly sick? You need to go to a doctor to find out what is wrong with you.”
And even when I always told my questioners that I was seeing my doctor on a regular basis now because I was so frequently sick, they then began to give me advice.
“You need to start taking vitamins.” “I am taking vitamins.” “Well, you need to exercise more.” “I’m a single parent of a toddler, going to college, taking care of a house, inside and out, all by myself. Trust me, I get enough exercise!”
My hands were especially becoming more and more painful. It became more difficult to write the copious amounts of notes in my college classes, to write up research papers on my word processor, and sometimes even to eat.
My hands would frequently become swollen and stiff and sometimes so numb that if I tried to use a fork or a spoon, my hand would sometimes drop the utensil right in my lap before I could bring it to my mouth.
I began to turn down dates and turn down invitations to go out to restaurants with my friends because I so frequently spilled food on myself. My clothing soon sported many stains that I could not get out, no matter what I used, so I had to save those clothes strictly to wear just around the house.
After Tara began going to school in 1988, my bouts with illnesses increased a lot. She would come home with all sorts of germs from her classmates and I would spend her school year with one cold, flu or stomach upset after another, each one taking more than twice as long as normal to run its course.
My primary care physician, Dr. Natalie Kelly, had done a thorough review of my chart before my first appointment with her very soon after she had been assigned to both Tara and I to be our new family medicine resident in the late 1980’s.
She told me that she believed it could be possible that I have rheumatoid arthritis and she asked me if anybody else in the family had ever been diagnosed with RA.
I told her not that I was aware of but that I would ask my mom who was the genealogical and family history expert. I told Dr. Kelly that my mom and dad both had had arthritis but not rheumatoid arthritis.
Dr. Kelly asked if I would mind doing a blood test to rule out RA and of course I told her I didn’t mind. So we did the test and I made an appointment to come back in a couple of weeks to discuss the results.
At that next appointment she told me that she had never had such an unusual RA test result before. She said that mine was technically negative but it was only one degree above the lowest acceptable level for not having RA.
None of that made any sense to me either. “So does that mean I do have RA but just not as bad or does that mean I don’t have RA but that I could maybe get it later on or what exactly does that mean?”
Dr. Kelly told me to sit tight because she wanted to discuss the RA test results with her proctor. She came back in about 5 minutes and said that according to him, I do not have rheumatoid arthritis and I heaved a sigh of relief.
Several years later as I began to have more and more problems with my hands, I was referred to an orthopedic specialist, Dr. James Heming. He also tested me for RA and the result came back identical to the first test so he also concluded that I did not have that disease
So I had three carpal tunnel release surgeries (two on my right hand, and one on my left) in 15 years but I still had continuous and numerous problems and increased pain with my hands. I also began to have additional problems and pain with my feet, knees, neck and back at that time as well.
I was put on a lot of steroids, different antibiotics, different regimens of vitamins and minerals over the years. I get a flu shot every year and I have always kept my pneumonia shots updated as well.
But nothing helped; I still got sick a lot with some sort of an infection that would take me twice as long to recover. It was so frustrating!
I kept thinking that I must be doing something wrong to get so sick and sick so frequently. I kept several bottles of hand sanitizer in my purse and I used them all of the time. I would Lysol all of the doorknobs in our house, wipe down the telephone and all of the remotes.
I sometimes wept, wondering if I would end up having to live in a plastic bubble like some people had to.
In what turned out to be a blessing in disguise, I was injured in an accident at my last job in 2006 and eventually because of that, I was able to collect Disability and Medicare health benefits. I then moved up to Bay City from our Flushing Township house in late 2010 to be nearer to my daughter and my granddaughters.
The first primary care physician I had here in Bay City turned out to be a real bitch. After a few years of hoping that my relationship with her would improve, I eventually switched to the doctor I had helped Tara recently select, Dr. Adnan Malik, in early 2014.
Bless Dr. Malik! I will forever be grateful to him because out of all the doctors I have seen since I have been in my 30’s, he was the only one who did a much better job of connecting those seemingly unrelated medical problems dots.
On my second visit to Dr. Malik, he spent quite a bit of time going over my medical history and all of the copies of medical tests, X-rays, CAT scans, MRI scans, etc., that I have kept over the many years.
He finally looked up and told me, “Jeneane, I really believe you do have rheumatoid arthritis and I would like to refer you to a rheumatologist to have that specialist rule out, for once and for all, whether you do or do not have RA.”
I told him, “But I’ve been blood-tested for it twice now, at different times during the past 25 years and both times it came back as technically negative. Both times the doctor who had ordered the test concluded that I must not have RA. So why do you think I do?”
Dr. Malik replied, “The fact that two separate doctors thought you might have RA based on all of your symptoms and then had you tested, makes me question why they would rely on just that blood test alone. And I agree with their initial suspicions. Your many years of RA symptoms makes me believe that you do indeed have that disease. And from what I understand, that blood test is not the only way to diagnose RA so that is why I want to send you to a rheumatologist to get the most definitive answer.”
That made sense to me but I was also very afraid to find out that I did have rheumatoid arthritis. In the years since I had last been tested for RA, I had learned a lot more about it during my nursing degree pre-requisite classes and I had discovered that it is a horrible disease to have.
So I went to see Dr. Carlos Diola with deeply apprehensive fears. He went over my medical records, gently but thoroughly massaged and inspected all of my fingers, hands, wrists, feet, toes, knees, etc.
I had already taken a blood test prior to this first appointment. So I closely watched his face as he read the results but he had quite the poker face and I could not gain a clue.
After he was done with the examination, he leaned back on his stool and he quietly told me that I did have rheumatoid arthritis and that I probably had had it since my early 30’s.
He also told me that he often wished he could educate his fellow physicians better because none of them should ever rely on just that blood test to rule out if a patient does or does not have RA.
Dr. Diola said that perhaps 15-20% of RA patients will test negative every time when that blood test is done but that does not mean that they don’t have RA. That test is only one of the diagnostic tools rheumatologists use and that a rheumatologist should always be consulted to make the final decision as to who has RA and who doesn’t.
And in my case, that lack of education from his fellow physicians really makes him angry because I have now had 25 years of damage done that now cannot be undone.
Dr. Diola explained that there are many wonderful medicines available now that can slow the disease’s damage and sometimes can put an RA patient into remission. However, whatever damage has already been done prior to being properly treated can never be undone.
So I asked Dr. Diola if having RA was the reason why I always became so easily sick and why it takes me so much longer to recover? And he responded yes, in his opinion it was the primary reason because RA is an auto-immune disease and it drastically lowers the body’s defense systems.
So I fired even more questions at him. Is the RA responsible for how big my hands and feet had blown up? Is it responsible for me dropping things all of the time? Is it responsible for me being in such pain all of the time and for the pain to be in so many different places? Did I have three unnecessary carpal tunnel release surgeries because the problems with my hands were really because of the RA?
Yes, yes, yes, yes, he repeated to me after each question. After my barrage of questions, I just sat there, stunned.
Wow! Being told I had this horrible disease was quite unsettling but having the one answer to so many of the weird things that had been going on with me for so long was like a solitary candle being lit in a completely darkened world for me.
It wasn’t me, it wasn’t my fault! It was this damned disease! And then as Dr. Diola asked me additional questions, I realized how insidious of a disease rheumatoid arthritis can be.
He asked me if I had ever had floaters in either of my eyes. And I was quite startled because I had just begun to experience those in my left eye. Dr. Diola explained that RA affects the eyes so that I will need to have my eyes checked every year.
Floaters are like having little pieces of dirt or things that may look like a little bug that float around on the surface of your eye. They look like you are watching something floating around in the air in front of you but they are really on your own eye.
Then he asked me if I had ever been hospitalized for pneumonia or have had frequent problems with bronchitis or with COPD. And I told him yes, for all of those, but then I have smoked for almost 35 years so that is most likely the explanation, right? Dr. Diola then told me I had to seriously consider quitting because the RA alone also badly affects the lungs.
Then he asked me if I had ever had heart problems or if a close family member had ever had heart problems. I replied that I had not been diagnosed with any heart problems but we did have heart disease that ran rampant through both sides of my family.
I told him that my dad had suffered three heart attacks in rapid succession and it was the third one that had killed him in October 1984. I also told Dr. Diola that ironically enough, my father had suffered the heart attacks just before he was due to be released from the hospital after he had been admitted a week earlier for pneumonia.
I also told him that my mom had had a quadruple bypass surgery about 20 years earlier and she was on high blood pressure medication, a beta blocker and other medications.
My mom’s cardiologist had just recently told her that she needed to have another bypass surgery but he really doubted that with all of her other health problems that she would make it off the operating table alive but he would leave the final decision up to her. She had chosen to not have it done again because she was 89 years old.
Dr. Diola nodded as he wrote all of this information down in my chart. (by the way I did have a heart attack in October 2014, several months after this initial appointment with my rheumatologist.)
Then he began to explain the procedure on how we would find the right medication for me and I became quite disheartened after that. He said that it might take between one and two years to first find the right medication and then to fine-tune the dosage for me.
I replied in dismay, “One to two years? That long?” I had just been thinking, “Well, if I have to have this disease, at least there are lots of new drugs out there now so I should be feeling a lot better in no time!” And now that hope had just been dashed and smashed to the ground.
Dr. Diola patted my hand and smiled at me as he told me, “We will get you feeling better as soon as possible but I just wanted to warn you that it might take that long.” Unfortunately, I’m now going into that second year of still trying to find the right medication.
The major problem with the majority of RA medicines is that even though the disease does a horrible number on your immune system itself, the medicines can play even greater havoc on it.
Dr. Diola and I discovered that with the very first RA drug he put me on, methotrexate. Within just a few short weeks of being on that drug, I came down with a cold that then quickly developed into bronchitits and a sinus infection and then I ended up in the hospital on oxygen with a diagnosis of pneumonia, all within three weeks.
He later said that he’s had patients who have had bad reactions to that basic RA drug before but none as bad as I had had and so quickly too.
I describe having rheumatoid arthritis like this: There is a cliché that someone can be their own worse enemy, and if you have RA, that is quite literally the truth. Your body attacks itself and tries to destroy itself.
RA affects your heart, lungs, immune system, your eyes, all of the many bones and cartilage in your hands and in your feet, it affects your knees, your hips, and your neck vertebrae.
For some reason I have never been able to understand or have properly explained to me, when you have RA, you hurt much, much worse when you wake up.
You have so many different body parts that are so swollen, inflamed and painful that just getting out of bed sometimes seems like the most courageous act you will ever do.
So I am impatiently awaiting the right medication and then the right dosage so that I can, hopefully, feel half-way normal again.
And after discussing my newly-diagnosed RA with my mom and my brother, Keith, we all believe that my dad had undiagnosed rheumatoid arthritis. Based on my descriptions of his hands and feet and my dad’s medical history, Dr. Diola is also pretty sure that my dad had had it and thus, passed it on to me. My daughter, Tara, was quickly referred to Dr. Diola after my diagnosis. She has another type of auto-immune disease that is quite similar to my rheumatoid arthritis.
But as much as I would dearly love to give this horrible disease away if I could on Craig’s List, at least I finally now have the answer to so many problems and questions that I have had for so long. And knowing that there is a chance that I can put this disease into remission is a hope I will always cling to.