I was in my 30s and planning my wedding when I noticed a peculiar change to the ring finger of my right hand. The fingernail had begun to separate from the skin beneath it. It looked terrible. I carefully covered it with nail polish and hoped it would grow back. It did not get better. It got worse.
Over the years the problem spread to other fingers, and my nails continued to deteriorate. I noticed that the change often began with darker pink spots under the nail. These spots grew and eventually the nail began to turn white and to separate. Sometimes the nails got tiny pits in them. I figured I had picked up a fungus while working in the garden. I started wearing garden gloves to avoid getting dirt down in the nail. If I got anything under it, I had to dig it out. That was not only impossible, but painful to attempt. The unattached part of the nail was also a hazard if it got caught on anything, so I began cutting it back to the pink area (which was often just barely above the cuticle).
My nails were a constant embarrassment to me. I tried over-the-counter solutions to remove nail fungus. They didn’t help and they made my fingers sore. While getting an annual check-up I finally asked my doctor about it. He said that the insurance company would require nail scrapings. He seemed hesitant to put me through the painful procedure. Instead, he provided me with samples of a drug he’d been given by the drug company. This was a new pill at the time and was being advertised on tv as the best way to cure nail fungus.
I took the medicine as directed but only had a 6 week supply of samples. I was supposed to take it for 8 weeks. My doctor had told me to just drop-in for more samples when I was close to running out. I waited until the last couple of days. My doctor had gone on vacation, so I didn’t get the last two weeks. I figured I’d taken enough by then. I should be seeing some improvement, but all I got was a case of acid reflux. (I had to start taking a pill for that). Sometime later I discovered that the fungus pill I’d been taking had potential health risks to my liver. I decided ugly nails were better than liver damage. From then on I just lived with the fact I had ugly nails. It was embarrassing, but I felt pretty helpless.
The years passed and my body changed too. I gained weight. I had less energy. I’d had two wellness screening which showed elevated platelets, but I was given no real explanation as to what might be causing it. One morning I woke up with a stiff neck that would sometimes pop when I moved it. I discovered that I could not turn my head as far back as before. This made it harder to back up when driving. I would have to twist my torso to get the extra room I needed to see where I was going. I thought I had just slept funny and that it would get better with a little time and movement. It did not. Soon after that I began waking up in the morning with numbness and tingling in the tips of my fingers. My hands were stiff and I had to work at making them flexible. My feet also began to stiffen so that when I got out of bed each morning to go to the restroom, I would walk funny. My husband teased me about having “elephant feet” since I walked so heavily.
Next the two fingers on my right hand (the first two that had gotten icky nails) became red, swollen, and sore around the outer joints (those closest to the end of my fingers). When the redness and swelling went away, I was left with enlarged joints and fingers that now were slightly bent . Soon the same redness began on my other hand on the same fingers. The fourth toe on each foot also began swelling and turning red. My back had started hurting more, especially from the waist down. My bottom would get numb if I sat for even a few minutes and when I stood up, I would have to use my hands to push against a table or chair to help lift myself. It also took a second or two to straighten my back when I did get on my feet.
My doctor told me that there are over a hundred different types of arthritis. He ordered blood tests. When the tests came back negative he seemed to dismiss the search, saying I didn’t have the top three and mumbling something about how difficult it is to keep insurance with a diagnosis of arthritis. I took his comments as meaning that I was just getting older and it was better to keep my insurance than to pursue this idea any further. A lot of the stiffness did disappear after I’d been up for awhile in the morning and got moving, so I didn’t push my doctor for more at the time.
I was only in my early fifties but I felt like I was getting old in a hurry. I was losing energy and getting weaker though no one around me appeared to notice. I was still going to work everyday and giving it my all. I had lived my work most of my adult life so it was natural to just keep going. I was totally exhausted by the time I got home. I blamed my aches and low energy on getting older, losing hormones, frequent sinus headaches, and the stress of life and work.
In October of 2008 my fall allergies got the better of me. I went to the doctor and he prescribed an antibiotic for a sinus infection. I began to feel better but I also began to hear a pounding in my head. It was toward the back and near the right ear. I recognized the sound as having the rhythm of my heartbeat. It was continuous, loud, and annoying. I also started waking up frequently at night with a white coating on my tongue and a very dry mouth. I would keep a mug of ice water nearby so I could get a drink and quickly go back to sleep, but the numerous interruptions made it difficult to feel rested when the alarm went off. I tried using Chin-Up strips to help keep my mouth closed, and I began using Breathe-Right strips across my dry, stuffy nose. ( I was not an attractive bed-mate).
I went back to my doctor. He dismissed the pounding in my head as something that happens to the nerve near the ear as we get older. He thought the white coating might be a yeast infection, and he gave me antibiotics for that. It didn’t seem to help, but the doctor could not see any signs of an infection when I went back. I insisted that I was worried about the pounding in my head. Was I on the verge of a stroke? He shook his head, but always wanting to please, he referred me to an ear, nose, and throat specialist.
A month later I was sitting in this young specialist’s office being scolded for using mouthwash (alcohol dries the mouth). He didn’t seem to take my concerns seriously, seemed annoyed that my doctor had prescribed the “strongest thing we have to fight yeast infections”, and that he saw no evidence of a yeast infection or anything else. My mouth looked fine. He had no answers for the pounding in my head, but we would need to start with a hearing test. His receptionist would set up a time for me to come back for the test with the audiologist. I had not been in the best of moods when I arrived, so I left in an even more foul mood. I had gone in feeling pessimistic, tired and in pain. It was not an extreme pain, but a nagging, persistent ache that had begun to follow me throughout my day. I was exhausted. The pain and fatigue made me impatient, irritable, and easily frustrated. I found it hard to concentrate and sometimes I felt like my brain was in a fog.
I didn’t like him. I didn’t think I needed a hearing test. I could hear fine (if someone could take the pounding away). I canceled the appointment. Two weeks later I realized that I had no other plan, so I re-scheduled. Three weeks later, I had my hearing test. The lady was patient, listened, and said good things about the young specialist. I decided that I probably had not been his favorite person that day either, so I made sure I went in the second time with a smile and a friendlier demeanor. The hearing test had been okay, so he
ordered a CAT scan and an MRI of my head. It took a few days, one MRI and two
CAT scans (the hospital did contrast when they were supposed to do non-contrast,
or vice versa), but it was good to get it over with. I was hoping for good results and something that would explain the pounding too. The results showed no abnormalities of the brain. It was a relief, but I still had no answer to the pounding. Feeling like we had ruled out a stroke, I had another theory.
“Could it just be inflammation?” I asked. “Look at my hands.”
I had been more likable this time, and he had responded in kind. He looked carefully at my hands and told me he remembered something he had seen in medical school. It wasn’t his area but he was pretty sure that it wasn’t nail fungus. He also pointed out how the redness and swelling were limited to the outer joints of my fingers while the inner joints were fine. He had his receptionist call and set up an appointment with a rheumotologist.
It took another month, but I was given a diagnosis on the very first visit. They took x-rays and told me how they planned to treat me, but they gave me no medication. I had to come back in a month after I had time to read the literature they provided on the disease and the medications they would need to prescribe. A blood test was taken, but just to form a baseline. My disease cannot be identified through blood testing.
Turns out I have psoriatic arthritis. If you have psoriasis (even a very mild case like mine) you need to know that 10-30% of us will develop the arthritis. They don’t know why. It is an autoimmune disease which means my own immune system is attacking me. It is systemic which means it affects all parts of the body. (That explained some of my other issues that I haven’t talked about here.) It is also progressive which means it will continue to get worse with time. It can be just as crippling as rheumatoid arthritis and shares many of the same symptoms and treatments. RA has a protein in the blood that PsA does not. (Stuff like that).
It is not an easy disease to treat and there is no cure, but there are ways of slowing it down and getting back to better times. I have been on medications for 18 months. My fingernails actually got back to normal for awhile and I had a short period of knowing how good it is still possible to feel. I still have the pounding but it actually goes away sometimes, and sometimes its not as loud. I don’t know if all my symptoms are due to the disease, but most of them seem to be improved with the medications. I had to stop the medications for awhile due to another sinus infection, but I know now how I should be feeling and how to get back there. Fifties are not that old. There is still a lot of energy and mobility at my age and I am finding my way back to it one day at a time.