Thursday, April 25, 2019

Speak so your doctor will listen

Starting in middle school, my daughter Nora would complain of seemingly benign symptoms. Obviously, these issues were a nuisance to her, but nothing that caused too much alarm for me. Because Nora was frustrated by these symptoms, I took her in to see the doctor, but even when we got a diagnosis, we never really got to the root of the problem. It was during these years that I eventually realized that while doctors are the expert on medicine, I am the expert on myself and my child.

Somewhere around the 6th grade, Nora said that standing up made her dizzy. So, the doctor told her to eat a snack and stand up a bit more slowly. Then she had difficulty with running in her PE class. Her pediatrician diagnosed her with exercise induced asthma. She was still able to keep up with ballet classes four to five days per week, for up to four hours at a time. I couldn’t make sense of this.
When Nora started high school, she joined the marching band. This turned out to be a struggle for her. She loved the challenge and the group effort but found herself exhausted and in pain. During the fall of her sophomore year, she had a rapid decline in her health. She was no longer able to just keep up in band.

One symptom that continued that I couldn’t get out of my mind is that her legs would get splotchy red and purple patches all over. It never seemed like it was significant, but suddenly I remembered an image I had seen on my friend’s Facebook page. My friend’s son suffered from postural orthostatic tachycardia syndrome, or POTS and she shared on social media to educate. (Coincidentally, this friend is the reason that I started sharing my health concerns. I’d love to help someone the way that she helped Nora and me!)

When I read the line about red-ish legs upon standing, something just clicked for me.  I sent the image to Nora and asked her which of those symptoms she had. My heart sank a little when she replied, “all of them.” It seemed certain to me that Nora suffered from POTS.

The pediatrician was not so easily convinced. She (incorrectly) expected Nora’s blood pressure to be elevated to move forward with a POTS diagnosis. Still, I insisted that Nora be referred to a pediatric cardiologist. During her first appointment with this cardiologist, she was diagnosed. It was then that treatment could finally begin.

It’s been almost two years since her official diagnosis and she’s found ways to manage many of her symptoms. The fatigue is still the most difficult to manage. She is preparing for some medical tests to determine if she has some new medical issues, but we are so much better prepared now.

Together, Nora and I have learned that, to get the best care, you must educate yourself. Get all the information you can. Talk to other people who share your illness. Read medical research papers online. Go to conferences specifically designed for patients. If possible, put yourself in a position that you’re speaking to experts. Join online communities.

When you speak to your healthcare provider, listen carefully to what they say. When it’s your turn to speak, they will be more likely to listen to you. Speak with confidence and insist that the provider listen to you. Share with them what you found in your research. Be patient and tread lightly but remember that YOU are the expert when it comes to your body or the body of your child.  

Tuesday, April 23, 2019

5 Ways to Feel Normal When You Have Psoriatic Arthritis

At 23 years old, most people are out having fun. At least, I think that’s what they’re doing. That’s not what my life was like. I was trying to figure out how I was going to have a normal life despite the onset of psoriasis and psoriatic arthritis. I had never seen a person my age struggle to life her foot to the curb.

Most people who know me have heard this before. During that time in my life when I was so young, I went to Wal-Mart to pick up my prescription. Pushing my cart through the aisles was the only way that I could easily walk, but I was still hunched over it, like I would have imagined an elderly person. That’s certainly not the way a young person has to navigate through a store. A friend I had not seen in many years walked over to me and asked what was wrong. When I told her that I have psoriatic arthritis, her words to me hit hard. “Arthritis? But you’re so young!” Yes. Yes I was. How many years was this pain going to be with me? Is this what the rest of my life will be like? What am I going to do??

It’s been 27 years since then. I have certainly had my share of challenges, but nothing as desperate as it seemed that day. Since then, I had a daughter who is now a teenager. I take advantage of my good days and give myself a break on my not so good days. Here are a few things that I have learned along the way to help myself feel more normal.

  • Rest when you need to rest. When I want to do something, it’s hard for me to make the decision to stay home and take care of myself. But this is important. Every time I defy my body, I regret it. The pain sticks around longer. The fatigue becomes impossible to push through. Your body knows what you need and will demand that you listen to it!
  • Play when you can play. If you’re having a good day, take advantage of it when you can. Go for a walk, take the kids to the park or do something more adventurous. You might not be able to do what you once did, but you’ll appreciate the opportunity to feel normal. Just remember not to overdo it.
  • Find what makes you feel good. People have lots of recommendations, but you need the ones that will work for you. Mine is a hot shower. People have told me for years that heat will only make inflammation worse. I questioned whether I should do it. I finally decided that I’m not going to let anyone deprive me of the one thing that always makes me feel better. Some prefer an ice pack, heating pad, an Epson salt bath or a short walk. Find what makes you feel good and use it.
  • Tell people close to you. I know there are many people who don’t want anyone to know about their psoriatic arthritis, so they try to hide it. Except that it’s hard to hide this disease. Even if your psoriasis is under control, when you’re actively in pain, people notice. If you share with people, you’ll be pleasantly surprised to find that most of them will be understanding. There will always be people who won’t, but if they won’t be compassionate when they know what you’re suffering from, they certainly won’t be any more compassionate when they see you struggling but don’t know why. I think you’ll find that if you let those around you know what’s going on, they will offer help (accept it!) and they might even ask you questions about it. This is a great opportunity for you to educate others about this disease. I love when people ask me questions about psoriatic disease!
  • Accept help when you need it. If you’re struggling, there is no shame in letting someone help you. For the longest time, I felt that it made me weak to let someone help me. Fortunately, there are great options available now when we can’t do things for ourselves. After my total knee replacement surgery last year, when my family was away at school and work, I’d order groceries using Prime Now or Instacart. I got myself to doctors’ appointments and physical therapy using Uber. Grubhub was a perfect way to get the delicious meal I wanted but couldn’t go get. And there is no guilt associated with this method!

Are there ways that you learned to make your life with PsA easier? 


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...