Sunday, September 22, 2019

Psoriatic Arthritis Setback

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What a week it has been! I went to the orthopedic surgeon on Thursday because of pretty severe hip pain. In my mind, the surgeon would give me a cortisone injection in the hip, send me to PT and tell me to come back in three months. In three months, they would then recommend hip replacement. Boy, was I wrong! 

As it turns out, the pain stems from my low back. After nearly three decades of arthritis, it should have come as no surprise to me when she said, “extensive degeneration” in my spine. That degeneration is pinching nerves and that’s what’s causing my hip and leg pain. She also told me I have scoliosis and showed me a very curved spine. Since I was visiting the knee and hip team, I had to get on the schedule of the spine team. In the meantime, I got a prescription for Gabapentin and PT. I see the new doc in 4 weeks where, if I’m not experiencing noticeable improvement, I will need an MRI and then, potentially, a steroid via epidural.

When I was in the doctor’s office, I was so glad to have scheduled my appointment with my surgeon’s compassionate PA. While my surgeon is very skilled and did a fantastic job on my knee replacement, he’s not known for his bedside manner. The PA answered all of my questions and didn’t flinch by my tears.

When I left the office, I completely fell apart. All I could think about is how far I’ve come since I started having symptoms of psoriatic arthritis. That was 28 years ago and I remember the pain like it was yesterday. I remember how hopeless and uncertain I felt then. That’s how I felt on Thursday.
Way back in my first signs of psoriatic arthritis (PsA), I couldn’t imagine how I would get up and go to work day after day. It never occurred to me that at 50+ years old I would still be able to work. But here I am! On Thursday, I wondered if this was the beginning of the end. It was a hard day for me. So, I did what I do. I jumped into action. I scheduled four weeks’ worth of PT at a local wellness center where I will be able to use the therapy pool. I scheduled a immediate appointment with my mental health therapist for that very afternoon. She helped me find a lot of clarity about my strength and perseverance and when I left her office, I felt much more hopeful.

Setbacks happen. PsA is a difficult disease to manage. For days, months or years, you might feel fine. And then one day you wake up and remember how bad this disease can make you feel. Know that this is normal. As many times as I’ve been through really bad times with PsA, my life is more good than bad. In fact, it’s pretty great. I’ve got an understanding family, caring friends and a job that allows me to use my skills to make a positive impact.

It might come as a surprise that I consider PsA one of the positive things in my life. After all, with this disease, I wouldn’t be the person I am today. I wouldn’t be as determined or as compassionate. I’ve met so many people I know through the chronic disease community as part of my patient advocacy. This disease has given me the opportunity to make a real impact on other people through my volunteer work.

Don’t give up on yourself. True, your life with psoriatic arthritis, or any other chronic disease, might not be what you expected. It’s the life you have now and it can be satisfying and fulfilling in spite of the struggles.

Wednesday, September 18, 2019

Not All Disabilities are Visible

Who among us has ever looked at a person getting out of a car in an accessible parking space and thought, “she doesn’t look disabled to me”? I will admit that sometimes that thought still runs through my head. I should know better – and I do. Let’s face it, it’s hard not to judge.

When I do start to feel a little judgy, I try to put myself in that person’s shoes. Maybe she feels okay at this very moment, but she knows that when she leaves the concert she’s at or when she walks out of the home goods store that she’s going to be in pain. 

My rheumatologist is always very cautious when she provides a handicap parking permit. Ultimately, she wants her patients walking as much as possible. When I finally went into her office and told her about all the things that I don’t do because I’m afraid that it will be too painful for me, she immediately gave me what I needed to go to the DMV.

You may find it hard to believe, but I hate to use these special parking spaces. The intent behind them is to make life easier for those with a disability. Most of the time, I want to believe that there is someone out there who needs this more convenient parking space more than I do. But sometimes, the pain is too much for me. Or, the distance is so far that I know that I might be able to make it to the place that I’m going, but when I leave, I might not be able to make it back to my car. So, there are times that I use that parking space.

When you’re parking in these accessible spaces and you don’t have some sort of medical device such as a cane or a knee brace, people aren’t shy about looking at you with judgement in their eyes. Or, maybe I’m just being paranoid and making assumptions about what’s in their eyes. But probably not.

Able-bodied friends, please be patient with those of us who take advantage of accessible parking. Recognize that we’re likely embarrassed to be parking there. We want to be healthy enough to park where everyone else parks. This is not what we want, it’s what we need.

Friday, September 13, 2019

If you're looking for perfection, you won't find it here.

I started this blog with high expectations of myself. I expected that I would be eager to write about my life a couple of times a week, and each post would represent the very best of myself. I would show everyone that it’s easy to live a full life with a chronic illness. Maybe that was unrealistic.

Life got the best of me. The summer of 2019 was filled with fun, but it was also filled with stress. My family went on a fantastic summer vacation; a cruise to Key West, Costa Maya and Cozumel. For the first time in my life, I snorkeled. It was amazing!!

The weekend after our family vacation, Nora and I went to Austin, TX for the OCD conference. I’ll tell you more about that later, but suffice it to say, this was not the best conference I’ve ever been to.

Less than a week later, I traveled to Germany for a patient speaking opportunity.

Here’s where things get crazy. Just days after returning from Germany, my family moved across town. Also, my office at work was moved during this time. So, while these were all good things, they were still stressful. And anybody who deals with an autoimmune disease knows what stress does to the body.

Oh…and did I mentioned that my arthritis medicine, Enbrel, failed during that time?

The joint pain that I’ve experienced over the past couple of months have rivaled what I felt at the very beginning of my experience. Fortunately, I’ve learned to hide it better than I did 28 years ago. But this post isn’t about how much pain I’m in. What I prefer to tell you about is how difficult it can be to share the hard times.

My hope with this blog was to show you my real life. But, when life I got hard, I stopped sharing it with you. It was hard to articulate what was going on when I just wanted to keep that to myself.

I’m going to do better to paint a more accurate picture of life with psoriatic disease. After all, that's what this blog is all about. If you're looking for perfection, you won't find it here.

Psoriasis and Tattoos

Before I got my first tattoo, I went online, frantically looking for someone to tell me that it was okay for me to go okay - I would be fine...