Thursday, November 21, 2019

Psoriatic arthritis: Making movement joyful

All my life, I heard people say that the key to exercise is to find something you enjoy. When you’re living with psoriatic arthritis – or any chronic pain – that’s not as easy as it seems.

I’ve struggled to find an activity that I could tolerate, let alone enjoy. I enjoy walking, but not so much if the weather isn’t ideal. Or if my knee hurts that day. Maybe last time I walked, I got a severe foot pain and had to hobble back, and then the trauma of that sticks with me.
Sometimes, I enjoy working on machines, but again, the environment and situation must be right.

Over the past few months, I’ve been in physical therapy to deal with these back issues I’m struggling with. And guess what? I love it! I have always loved PT. After knee replacement, I fought to continue with PT, but it became increasingly difficult to justify.

It feels great to have specific goal that is not about forcing my body to change its appearance. (That’s a whole other topic that I’m not going to get into now, except to say that I’m trying not to let this be my focus anymore.) Someone is helping me and encouraging me. My physical therapist allows my pain to be the guide for what I can and cannot do. We don’t simply stop because something hurts. We evaluate how much it hurts and if I’m potentially doing damage to my body, we change it up. She challenges me and I want to do more in each session than I did before.

I’ve also learned to do new activities that I take into my personal workout routine. (You heard that right! I’ve got a personal workout routine!) It just so happens that my physical therapy is at the same wellness center where I am a member. So, I learn these activities and then take them out into the gym. My favorites are noodle cycle and my TRX workout. I've recently heard more about joyful movement and these are my joyful movements!

I bet you’re wondering what noodle cycle is, right? I get in the pool, sit on a noodle as if it were a bike and I pedal, pedal, pedal…back and forth through the deep end of the pool. I also use my arms for an additional workout. I found this video on YouTube where you can see what I do. I also add my aqua PT into this, as well.

I’ve only recently added land work back in to my routine. It’s much more difficult for me given my back and nerve pain, but it is so rewarding when I do it. TRX squats give me so much relief from my lumbar pain, even as I’m doing them. TRX rowing helps prevent my upper back and shoulders from giving me so much trouble. My newest activity is the leg press. I’ve always loved that, but it’s now harder than ever since my nerve pain has created so much leg weakness.

How funny is it that I thought that I hated exercise and then realized (and remembered!) how much I love it when I’m with a physical therapist. Could it be because I’m too hard on myself? (Bear with me here…I’m thinking this theory through as I type.) I’m not super nice to myself. I know that I’ve been to the gym before and felt pain and thought to myself, “what’s wrong with you? Everyone else is pushing through. You’re just too lazy to do it.” The truth is, I’m not lazy at all. I hurt. I have been trying to work own my own and then beating myself up for not knowing how to create exercise limits for myself. (I honestly did not know that exercise wasn’t painful to everyone until a couple of years ago.)

Another thing that I’ve found, and this may be the most important takeaway, is that I needed a facility where I could feel comfortable. And, I found it! If you’ve got chronic pain and are looking for a gym without judgement, look into area wellness centers. These are often tied to a health care system and tend to offer more than simply a workout gym. If you’re not comfortable at a facility, you’re not going to go. Also, I’m not saying that you can only work out at a health club. Maybe you’re motivated enough to just do your thing at home. I am not.

Now that I have realized that the key to really joyful movement is my physical therapist, I feel that I have more insight and ability to stick with it. It’s good for my body and my emotional well-being. Now, if you'll excuse me, I've got some noodle cycle to do!

Tuesday, November 19, 2019

Health Advocacy: Let Your Story Make a Difference

I have recently started volunteering with National Patient Advocate Foundation’s (NPAF). This organization represents the voices of patients who, like me, are coping with serious and chronic illnesses nationwide. They serve as the advocacy affiliate of Patient Advocate Foundation (PAF). We had a Can We Talk Raleigh event early this month at the NC Medical Society where I had the privilege of participating in a panel discussion.

Those of you who know me understand my passion for my volunteer work. I appreciate the opportunity to tell my story in an effort to help myself, my daughter and other patients with psoriatic disease. I want to educate people around me so they can recognize the symptoms of psoriasis and psoriatic arthritis. I want to use my voice to ensure that lawmakers take people with chronic conditions into account when making decisions. Most importantly, I want fellow patients to learn from my experiences so they can make decisions that will have a positive impact on their lives.

Our agenda at the Can We Talk Raleigh event was about person-centered care. If that term is new to you, you’re not alone. NPAF defines person-centered care as the recognition of patients’ health problems as they see them. That’s right. This line of thought makes the patients’ opinion the one that matters the most. We are the ones who lives in these bodies – these bodies with chronic illness. It makes sense that our concerns weigh most heavily when we seek treatment. Some of the things that matter most to people are:
  • How can I control the pain so that I can still do the things I love?
  • Will I still be able to work? 
  • How much is this going to cost?
  • Is that covered by my insurance? 

Can We Talk Raleigh panel
I was on a panel moderated by Sa’Brina Davis, caregiver and patient advocate. Joining me on the panel were Dr. Ken Holt (primary care physician), my friend and fellow psoriatic patient, Brian Lerschall and Jennifer Pinney (patient.)

One of our primary questions was how can I get my doctor to listen to me? I’ve written another blog post on this topic in the past and feel that this is something many people could use help with. In fact, my family needed help getting specialists to listen to our concerns when my primary care physician told me the secret. Your body language must match your primary concern. If you walk in to the doctor and you say, “I’m in so much pain I can hardly move. On a scale of 1-10, my pain level is an 8,” yet you are telling jokes and goofing off, the doc might not take you seriously. If your pain level is truly an 8, you’re going to be having a bit more difficulty with your communication. It should be obvious when the doctor looks at you that you’re in a considerable amount of pain.

Dr. Holt made some really great suggestions too. He likes it when his patients come prepared with a list and start the conversation with the most important question on the list. All too often, people wait until he’s just walking out before the toss over an important question. Dr. Holt says that his schedule, like most other doctors, is packed and that it’s important for us to remember that he’s got a limited amount of time to spend with us. Make that time count! You’re responsible for ensuring that he knows everything he needs to know to make a diagnosis and provide appropriate treatment.

As the meeting progressed and the panel discussion wrapped up, we discussed other topics that I want to touch on quickly. We talked about the power of the story. We all have one, that’s for sure! Use yours to make a difference. For example, you can use it in the doctors office. Dr. Leana Wen, a doctor in Baltimore and the author of When Doctors Don't Listen: How to Avoid Misdiagnoses and Unnecessary Tests says, “Don’t go into that office simply saying your chest hurts. Tell the story of it. For example:
  • When it started
  • If it’s been painful before
  • What you were doing when your first felt it
  • How it felt
  • How often you feel the pain
That can really help clear things up.”
Your story can also change policy or raise awareness about an issue. These are all reasons that I choose to share my story. Even now that I’m on short term disability from work, I share my story. It’s that important. Yes, I’m in pain. I might not be able to sit in the meeting from beginning to end because of that pain, but it’s so important that I tell you what happened to me that I’m going to struggle through.
I know that most of my readers also have chronic health conditions. Many of you are already advocates for your condition, but if you’re not, I encourage you to share your story. Even if you’re not ready to stand on stage and tell your story, there are other ways you can share. Tell one person. Instead of being angry if someone asks why you’ve got a limp, use that opportunity to tell them exactly why you have that limp. Set up a meeting with your state senator. Tell your lawmakers what’s important to you and why. Get involved.
If you need help brainstorming ways that you might get involved, let me know. I’d be glad to try to help.

Saturday, November 9, 2019

Getting through a lumbar spine MRI without freaking out

Having psoriatic arthritis for almost 30 years, I’ve gone through my fair share of medical and diagnostic procedures. Some of these are more uncomfortable than others. But nothing was quite as unnerving as the lumbar spine MRI I had yesterday.

This MRI is the biggest step toward my healing, so I knew that it must be done. It will tell us exactly what is causing such severe pain in my low back. We know that I’ve got extensive degeneration that is causing nerve pain into my right leg – and starting to affect the left side, as well. This MRI will provide more information to tell us the next steps in my treatment.
When I scheduled this appointment, the MRI scheduler asked if I was claustrophobic. “Maybe. I’m not sure.” I don’t typically find myself in small spaces to know if I am or not. She told me that, since I was scheduled for the mobile truck, the machine would be a little larger than normal and that should help with any feelings of claustrophobia.

Surprisingly, I was not nervous as I arrived at the office for this scan since I’ve done this before on my knee. However, I knew that this time I would be going in head first. Still, the scheduler told me that this unit was larger. With that in mind, I confidently walked (or hobbled) into the office to check in for my MRI. I completed a form, answering questions about my medical history. There were also questions about metal that might be in my body or on my person. I took off my jewelry and my hearing aids and checked my clothes to ensure that I hadn’t left any metal on. When the technician talked to me, I let her know that I have metal in my knee (from my replacement) and in my foot (a plate and screws from bunion surgery.) She let me know that was fine.

We walked over to the MRI truck and I saw the machine. Holy cow! It was small! Could this really be the bigger one? How much smaller do they get? Now I’m starting to panic! The technician was very reassuring and asked if she could put a washcloth over my eyes. She told me that would help me with this 30-minute scan. “Yes! Anything that will help is great.” In I go. The tech is standing with me as the machine slides me in, her hand on my leg for some reassurance. She tells me that I’m doing fine. I don’t completely feel fine. I want to sit up. But I try to control my breathing and get through it. I had a call button in my left hand, and I knew that if I really couldn’t handle it that I could just squeeze.

As the scan starts, I could feel slight movements in the table and heard so much noise. I felt very thankful for the earplugs in my ears. I wondered if the walls were closing in on me. I tried to squeeze my arms closer to my body. The last thing I would want is to feel the walls. I wanted to reach up to see how close it was to me, but I knew that would only freak me out. I paid attention to my breathing. I took a slow breath in through my nose, filling up my lungs before I exhaled just as slowly through my mouth. My eyes were closed. I told myself that this was just a tanning bed, but since I had my clothes on, I would still be pale when I got out. I didn’t believe myself. Knowing that my treatment depends on this MRI, I was determined to get through it. I kept my eyes closed and thought about things I enjoy – puppies, cute baby goats and the beautiful vineyard we went to a few weeks ago.

Finally, I heard the technicians voice through the speakers. “This is the last scan. 6 minutes. You’re doing great.” That means I’ve already been there for 24 minutes. 6 minutes is nothing. I’ve got this. It’s almost over. More clicking and buzzing and whirring and then it was over. I tuck in my arms a little more as I feel myself sliding out of this machine. I’m told to close my eyes as the washcloth is lifted from my face. “It’s very bright in here.”

With that, it’s all over. I had the opportunity to complete a survey. The technicians were amazing, so I was glad to give them 5 stars. I knew I could count on them to end the MRI if I needed to. What a relief that it didn’t come to that.

If I needed to do another MRI, I think I would be able to go without panic. It’s an awkward and vulnerable position to be in, but it will help me get the treatment I need for this relentless pain.

What are your tips to make an MRI 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...