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Erin’s blog

Erin 

Hi, I’m Erin. I have lived with Juvenile Rheumatoid Arthritis since 1973. I was born in the United States and obtained a Master of Science degree in Marriage and Family Therapy there in 1998. In 1999 I married a Kiwi and moved to New Zealand. In the past I’ve worked as a counsellor and an administrator at a DHB in NZ. Currently, I dabble in copy editing and proofreading, water exercise and volunteer work. I live with my husband and three cats.

Erin: When the glass is half empty, not half full

Erin: When the glass is half empty, not half full

Living with rheumatoid arthritis brings lots of challenges to my life. I’ve had my share of surgeries, planned and unplanned, resulting in differing leg lengths and even a dropped foot. (Makes my love of shoes a killer!) However, I was never given a hint about how arthritis might affect my mood.

Sure, we all know that people dealing with pain and limitations get irritable, tired and frustrated. I just never expected to end up seeing a psychiatrist.

Darkness rising

I’d always been a depressive person; the glass was half empty as far as I could see. Yet my sense of humour and faith kept me moving forward as I studied for my Bachelor’s degree and entered into the Master’s degree programme at another university.

During my first year I enjoyed the challenge of studying and getting to know my classmates. However, I started experiencing intense emotional pain during this time. By emotional pain I mean immense pain in my “heart”. This would often be followed by gut-wrenching sobbing that would last ten to fifteen minutes.

At first I thought this was related to unresolved issues that I was working through with a counsellor. But as these episodes continued I realised that they were occurring very randomly with no warning. I finally spoke to a professor about it because it was starting to impact my studies. She advised me to see a psychiatrist and recommended a man with offices near my home and school.

The doctor of psychiatry

A psychiatrist has both medical and psychological training. The psychiatrist I visited was extremely thorough in his assessment of me. He took my personal, family and medical history, including all the medications I’d taken from the time of my RA diagnosis 20 years earlier. Then he dropped a bombshell.

The psychiatrist told me that he suspected that the extensive use of prednisone to manage my RA during my childhood had altered my brain chemistry. He explained that the prolonged use of relatively large doses of corticosteroids had likely impacted my brain in a permanent way that meant I’d probably need to take antidepressants for the rest of my life! Well, no one mentioned that as a side effect of the steroid drugs.

As it turned out, the antidepressant prescribed by the psychiatrist helped me a lot. The painful sobbing episodes stopped and, after a few months of temporary insomnia, I felt fine. I still felt sad or down at times, but I no longer experienced the intense emotions I’d struggled with before. A few years later I weaned myself off the antidepressants to see if I still needed them. Within two weeks I experienced another episode of sudden, uncontrollable sobbing. Needless to say, I resumed taking the antidepressant and still take it today.

The research

I searched the internet to see what I could find about arthritis, prednisone and depression as I prepared this blog post. In general, corticosteroids like prednisone and cortisone do impact mental health in certain people. One paper looked at hundreds of research studies and concluded that about 34 percent of people experience adverse effects on their mental health from corticosteroid medications.

Generally, it is acknowledged that corticosteroid treatment does bring about adverse psychological reactions. However, these adverse reactions are often reversible by stopping the medication or including some form of medication to treat the psychological symptoms.

No need to fear

I admit that I felt somewhat hesitant to see a psychiatrist. I mean, I wasn’t crazy. But the professionalism and thoroughness shown by this psychiatrist set me at ease. I had to work through my own misgivings about being called “depressed”, but the difference that the medication made to my life was significant enough that I was able to accept that reality.

I would encourage you not to be afraid or embarrassed to talk to your GP or rheumatologist if you’re struggling with insomnia, anxiety, mood swings, lack of appetite or feelings of exhaustion. Six months on an antidepressant or anti-anxiety medication may make all the difference to you. It never hurts to ask.

Erin: Arthritis arrives

Erin: Arthritis arrives

I was walking to my car when I dropped my keys. I stood staring at them. I was alone on the large expanse of grass at university. No one was around to help. Now what?

Arthritis arrives

I was only seven years old when I was diagnosed with juvenile rheumatoid arthritis (JIA). The disease was aggressive and all my joints were soon involved. I became more physically limited as the damage rolled throughout my body. Thanks to excellent intensive treatment with drugs, physiotherapy and occupational therapy I maintained my mobility. However, life was much harder now that I couldn’t reach below my knee or above my head. I couldn’t do heaps of stuff I’d done before, yet my parents were determined that this wouldn’t disadvantage me.

Living differently

Despite the physical difficulty and pain, I was expected to attend school regularly and go to church on Sundays. I often encountered barriers in attempting to do these ordinary, simple things. A high curb meant that I had to walk farther to find a flat access point. A dropped book had to be picked up by someone else. I soon discovered that some people weren’t particularly happy to be asked for help. One man didn’t believe that I couldn’t pick something up! Why would I lie? Couldn’t he see my misshapen joints? These experiences, plus my parents’ determination that I have access to the same things as other kids encouraged me to find different ways to work around barriers.

Solving problems

I became good at picking things up with my toes. This was tricky though because I couldn’t bring my foot to my hand. So, I would drop what I had picked up onto a nearby raised surface, like the foot-well of a car or a bench. Then I could reach it with my hands. I also became quite skilled at using long implements, like a pen or stick, to push or pull things off of a high shelf. This required good hand-eye coordination because at the grocery store I had to catch whatever I nudged off the shelf. I used a long-handled scrubber to wash my hair. That eventually gave way to a nylon exfoliating cloth which offered more flexibility around the top of my head.

I found that I actually liked the challenge of figuring out ways to overcome physical challenges. Only using accessible file drawers at work wasn’t a problem for anyone else. Getting a bookcase unit to hold forms used to make up packs of information in the office was a cheap and easy solution and allowed me to help my colleagues more.

These ideas and all of the available adaptive equipment (sock cone, dressing stick, long-handled comb, raised toilet seat, etc.) have enabled me to style my hair, work, study, and live a full life. I encountered people along the way who seemed sure that I was disadvantaged and wouldn’t be able to achieve what I have. I honestly never understood their viewpoint. I just moved on and lived life on my own terms. Everyone has the right to do that.

…I kicked the keys the last few feet. If I could lean against the wall, pick the keys up with my toes, drop them into my shoe, lean the shoe up against the wall and reach down to get it I’d have my keys. That should only take a few minutes… right? Ten minutes later, with gravel stuck in my nylons, I finally reached the shoe. Success! I had my keys!

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