In looking back, my journey with psoriatic arthritis and osteoarthritis probably started in my 20’s, however, I wasn’t diagnosed until my late 40’s. When I was finally diagnosed I was very angry at the doctors that I had seen over the years–how could so many different doctors have missed this? Unfortunately, I am learning that my story is much more common than I would like to think!
As an Emergency Room Nurse I worked long hours, mostly 12-hour shifts but sometimes longer depending on how busy the unit was. In my late 20’s I started having issues with my right hip and my primary care doctor diagnosed it as bursitis. He injected my hip with steroids and it felt great after so I assumed his diagnosis was correct. As I continued my busy lifestyle juggling full-time work and raising a family, it became common for me to get my hip injected about 3-4 times a year. Yes, I knew that steroid injections could have long-term side effects but I was told as long as I didn’t get more than four injections a year it shouldn’t be an issue.
I was diligent about keeping track of my injections and it wasn’t uncommon for me to get an injection mid-shift if my hip was really hurting. The doctors on duty all knew me well and would sometimes notice I was limping and if I asked them for a quick injection they would say, “how long since your last injection?” or, “Go draw it up and I’ll inject it for you in between patients.” I would get the shot ready and we’d slip into an empty exam room and I’d get my hip injected, and then continue working my shift. This continued off and on for the next several years.
At the age of 40 I had started a new job and was the ER manager at a fairly large hospital in the Pacific Northwest. With the new position came challenges and stress! I soon noticed that I had a really bad case of what I thought was dandruff. I tried every shampoo known to mankind. My hairdresser recommended a couple of different options but nothing really worked. I wore light colored tops and sweaters so it wasn’t so noticeable to my co-workers and staff. Finally at the urging of my family, who were tired of the constant scratching and flakes everywhere, I went to my doctor. She took one look and said, “It looks like a really bad case of dandruff”. She prescribed a topical steroid lotion and gave me a couple of refills. It worked well and within a short time most of the ‘dandruff’ had cleared up.
I continued with the hip injections every 4-5 months as needed and the steroid lotion for my scalp as necessary. Then in my mid 40’s I started having problems with my feet. I tried a variety of shoes, Birkenstocks, Keen’s, Tevas, etc. I had a closet full of ugly expensive shoes but nothing seemed to work. The 2nd and 3rd toes on both feet looked swollen and were painful. I called them my sausage toes because they looked like a couple of cooked, plump breakfast sausages. Finally I saw my doctor and was referred to a podiatrist. He looked at my feet and said, “You have Morton’s Neuroma, we can fix that with a couple of steroid injections.” And, so I had injections between my toes. Not something I recommend and perhaps the most painful of all injections I’ve ever had! The swelling did go down for a bit but after a while I found myself going back for more injections in my sausage toes.
Next was the morning stiffness and fatigue. My primary care doctor did some bloodwork and said, “Well, you don’t have Rheumatoid Arthritis, your sed rate is elevated, I think you have Polymyalgia Rheumatica…It’s fairly easy to manage with daily low dose prednisone, here’s a prescription.” And, so the steroids continued. It was at this point in my life that I started to self-medication with alcohol. Pain medications never really helped my pain; all they did was make me groggy and cranky. I loved those first couple sips of vodka! It warmed my insides and almost instantly helped to relax my painful body. It also took away my many anxieties and worries. I couldn’t wait to get home each evening to indulge and drift away into a pain free world.
By the age of 45 my right hip was becoming more and more painful; the injections were no longer working for the Bursitis. I was sent for an MRI and then on to an orthopedic surgeon. He said, “well it looks as if you’re going to need a hip replacement but I’d like to hold off as long as possible due to your age…It’s most likely from all the years of being on your feet and wear and tear from your profession.”
So, I continued to work, as my disease progressed and I continued to self-medicate! I found myself hobbling around the hospital using a cane. Eventually, I couldn’t take the pain any longer and it was starting to affect my daily life at work and at home. Finally I relented and had a total hip replacement. I took eight weeks off for recovery and physical therapy and then was back to work.
About three months later I had two spontaneous compression fractures in my thoracic spine. The doctor said it was from all the years of “long term steroid use”. Shortly thereafter I started having red burning eyes, this was diagnosed as ocular rosacea and I started daily eye drops. Soon, I had my first bout of uveitis and it affected both eyes. Prednisone drops every two hours around the clock was a little distressing and at this point I was becoming scared and a little baffled.
I felt like my body was falling apart but I really didn’t have a definitive diagnosis. I went to the medical records department at the hospital and asked for my surgery report and all of my previous MRI’s, labs and X-rays. That evening I went home and started to comb through the reports. As I read the pathology report from my hip replacement surgery, suddenly, there it was in black and white! The very last sentence, “consider an auto-immune disease.” Seriously? I was stunned and angry! The next day I called my primary care provider and demanded a referral to a rheumatologist. I was furious with the surgeon who did my hip replacement and my family doctor for not notifying me of the pathology report. But, how could they, neither one had actually taken the time to read the report, they had no idea!
Naturally, it took a few months to get into the rheumatologist but within 20 minutes of meeting him he had a diagnosis. He did a complete exam, scoured over my lab work and x-rays, inspected the ‘dandruff’ on my scalp and palpated one by one each joint. As he was examining my feet he said, “I was concerned you were going to be a bit of a puzzle.” What in the world? What does he mean by that? “Have you ever heard the term sausage toes? It’s a classic symptom of psoriatic arthritis.” Seriously?! I had been told I had Morton’s Neuroma! Psoriatic arthritis? What in the world is that? After a little discussion he classified my case as severe and I was quickly put on a fast track to get started on a biological. He said, “We’re not going to waste our time, you’ve already had enough joint damage done, we need to treat this aggressively.”
It has been six years now since my diagnosis and I was eventually forced into early retirement, ‘sidelined’, ‘benched’, ‘put out to pasture’! I’m now on full medical disability as my hands are affected too and I can no longer pump up a blood pressure cuff or start an IV. About two years ago due to some unforeseen circumstances, I lost my health insurance that had made the biologicals affordable. I’m now on just Medicare and have recently fallen into the ‘Medicare Gap’ so currently I cannot afford any medications other than low dose prednisone and NSAIDs. I manage my arthritis mainly with diet and exercise, herbs, mediation, Epsom Salt bath, various gadgets and braces as needed, and those darn steroids. With my lifestyle changes I did give up the vodka and no longer ‘self-medicate’.
I often wonder if I had been properly diagnosed in my 20’s or 30’s if I could still be working in my chosen profession that I loved so dearly. After working full-time for over 30 years in the health care profession it just never occurred to me that I would someday be faced with medical treatment that was not affordable. My hope is to advocate for others with arthritis and affordable medications.
CreakyJoints is delighted to welcome Layne Martin to our CreakyJoints Blogger lineup. We especially look forward as Layne, a trained health care professional, takes on advocacy issues important to patients.