Tuesday, May 28, 2019

Julie answers questions about her life with psoriatic disease

For so many years, I've suffered with this invisible illness. There are so many questions that people have asked , either directly or indirectly. And there are a few that I imagine people want to ask. Since I think that many people with invisible illnesses struggle with these types of questions, I thought I would share some of them along with my answers.

I thought you were doing really well, but now you're writing and talking about your psoriatic arthritis a lot more. Are you getting worse?

Yes, I am doing great! But, my great is probably a lot different than you might expect. For me, great doesn't mean that I don't have pain. It simply means that I can manage the pain that I do have. Even on my very best days, I still have pain. It's just something that I now know how to live with.

Why do you choose to share information about your medical conditions publicly?

For me, sharing about my conditions assigns a purpose for having this disease. It allows me to help other people who might be looking for answers for themselves or a loved one. This is how I make margaritas out of lemons. Plus, I've found that people are very understanding, but if you don't give them the opportunity to understand, then they tend to speculate.

I see you doing activities on the weekend and then unable to keep a commitment later. How do you explain that?

I explain it by saying that I deserve to have fun just like anyone else. When I feel good, I take advantage of that opportunity. Unfortunately, I sometimes pay for the fun I have. Sometimes my back hurts or my knees hurt. Or maybe my weekend activity has nothing to do with my inability to keep my commitment.  Some of the most difficult places for me to stand are in warehouse facilities. I go out of my way to avoid shopping in warehouse clubs or Home Depot. It's the concrete floors. They always cause pain. This includes the warehouse at my job. I still do the work, but there are definitely times that I've had to ask someone else to do this for me.

Why don't you cover up your skin so that nobody has to see your psoriasis?

I'm so lucky that my medicine controls my psoriasis so well. Without medication, I'm considered more than 100% covered. That's measured by the number of palm-sized areas of psoriasis, so it isn't that my entire body is covered. At my worst, my hands, face and feet were the only part of my body not affected. It's more painful than anything I could ever imagine. During that time, I covered up everything I could. I always wore long pants and long sleeve shirts, even in the heat of the summer.  My psoriasis isn't so bad now, but even if I was completely covered with psoriasis again, I would not cover my skin to avoid upsetting someone else. I like to think I'm a bit more confident today.

I've seen you park in handicap parking spaces when you look like you feel fine. Aren't you taking that spot from someone who actually needs it?

I'm very sensitive about my use of my handicap parking tag. I hate to use it and I never use it simply for my convenience. Anytime I use this tag, it's because I feel that I need to. One of the symptoms of psoriatic arthritis is severe fatigue. There are times that I honestly don't know if I'll be able to make the walk back out to my car if I've parked too far away. Or, I'm having pain. You're more likely to see me using a handicap parking space if it's raining. That's not because I don't want to get wet. It's because that's when both my pain and my fatigue is at its worst. Still, I try not to use these spaces because I appreciate that I still have the ability to walk. I also recognize that there are many times that other people need these spaces even more than I do. You can feel confident that if I'm in a handicap parking space that I truly need to be there.

Don't you think you'd feel better if you lost some weight?

Probably so. But, weight loss does not reduce symptoms of psoriatic arthritis. It's so easy to blame the patient for their condition, especially when the patient is overweight. There are many reasons that weight loss is a great idea, but it's a misconception that weight is a factor in psoriatic arthritis.

What questions do you have for me? Or, do you have an invisible illness and find that there are questions people often ask you?  I'm always happy to talk about it and (big surprise here) I'm one of my favorite things to talk about. :)

Wednesday, May 22, 2019

Sick of being sick

I posted this a few weeks ago on Instagram. I got so frustrated over my POTS and chronic pain.

I'm so sick of being sick. It’s ruined a good friendship of mine. I feel like I can’t do anything at all. I upset so many people but no one understand that I am so so so much more upset than they could imagine. If I could have a normal, healthy body, I would. I'd trade this in an instant. I'm sick of this ruining my education, my job opportunities/ability to work, and relationships... POTS affects my life in so many ways and lots of my friends and family pretend to be supportive, or may genuinely be supportive until it gets to be inconvenient for them. 

Friday, May 17, 2019

6 Newbie Tips for Self-Injection

Fretting over the idea of your first self-injection? If someone had told me that I would become accustomed to giving myself shots on a regular basis, I would have laughed. Or maybe cried. I definitely would not have believed them. Self-injection has now become such a regular part of my life that my preference is always to inject myself rather than letting someone else do it. Seriously.

I’m going to let you in on a secret. I’ve always been kind of a fraidy cat. As a child, butterflies scared me. The smell of a dentist office made me want to run. (What is that smell, anyway? Wouldn’t it be easier to see the dentist if they could do something about that?) When I require an IV, I have a very strict 1-stick policy. If you don’t get the vein on the first stick, call someone else in to do it. You had one chance and you blew it.

In 2003, when my dermatologist told me about this new medicine called Enbrel, and he told me how it would treat my psoriasis and arthritis symptoms, I was overjoyed. But when he told me that I would be giving myself an injection of Enbrel every week, I told him that this was not the medicine for me. We talked more about it and he finally convinced me to give it a try. It took me more than an hour to give myself the first injection. I was such an emotional wreck by then that though my tears and laughter I exclaimed, “that wasn’t so bad!”

Years later and I’ve given myself injections of multiple types of medicine using different methods. I’ve used auto injectors, pre-filled syringes and the old-fashioned syringe with a medicine bottle. My preference is the latter because it gives me more of a feeling of control.

If you’re worrying about giving yourself an injection, here are some tips that have helped me.
  1. Relax. I tend to get worked up. Changing medicines sometimes makes me nervous because I don’t completely know what to expect. Is this one going to burn? How will I feel after I take it? Should I prepare for a reaction? I remind myself to take some deep breaths and try to clear my mind.
  2. Consider the timing. I like to take my injections just before bed. My bedtime routine creates more opportunity to relax. If there’s a chance this medicine might cause stomach upset (like methotrexate) I’m less likely to be affected if I’m lying down. If there is a time of day when you feel the calmest, that’s when I recommend taking your medicine.
  3.  Be consistent. I have little tricks to remember when to take my medicine. I take my methotrexate on Mondays so that I don’t forget it. Think of The Bangles and sing …it’s just a methotrexate Monday. I keep track of my monthly dose of Simponi on my wall calendar. A couple of days before I’m due for a dose, my joints usually remind me that this day is coming soon. Don’t forget to take your medicine on time.
  4. Cleanliness counts. I like to shower before an injection. It’s not necessary but it makes me feel better. What IS necessary is hand-washing and cleaning your skin with an alcohol wipe. Please don’t skip this step. Wait a moment for the alcohol to dry. Don’t blow on it – then you’re germy again!
  5. Get comfy! Many refrigerated medications are easier to inject if you let them warm up a bit. 10 minutes on the counter prior to injection is usually perfect. Check with your pharmacist first!
  6.   Try some music. If you’re using an auto-injector, you mind find that you’re troubled by the noise that it makes. Crank up some music to distract yourself from that sound. Or, try headphones and an audio book.  

If you’re still having trouble with your injection, check to see if your drug manufacturer or insurance provider have nurses available to provide additional training, either in person or on the phone.

What are your tips and tricks for self-injection? I’d love for you to share them here!

Also, I’d love it if you would subscribe to my blog and share it. Thanks for reading!

Tuesday, May 14, 2019

It's Mental Health Month and I Have OCD

With Dana Aderhold at the Mental Health Fair

May is Mental Health Awareness Month and because my employer, SAS, is awesome and socially aware, our work/life department held a Mental Health Fair today. This fair included over 20 agencies and services that support mental health and wellness. It was surprisingly well attended and a wealth of information.

One of the reasons that I cleared my calendar to attend this event is because the stigma attached to mental health is concerning to me. What we need to do is talk about these diseases to normalize them. I decided that I would start the conversation. I have Obsessive Compulsive Disorder.

I’ve been outspoken about my physical condition. There’s no shame in psoriatic disease. What I haven’t shared with most people is that I’ve had a lifelong struggle with anxiety. I don't remember a time in my when I didn't feel anxiety. Because it’s been with me forever, I often don’t recognize it. It’s clear when something is bothering me, but anxiety doesn’t knock on my door and wait for an invitation to come in. It sneaks in when I’m not expecting it.

There have been several times when I decided that I need therapy, but that is a huge exercise in trust that was very difficult for me. It seemed easier just to go to my doctor and ask for an anti-anxiety medication. Fortunately, my daughter finally convinced me that it would be good for me to have someone to talk to, someone to help me figure out where this anxiety comes from.

I called the practice owner of a recommended office and we had a conversation. I shared with her that I tend to lie to therapists. I tell therapists what I think they want to hear.  Starting with this statement made it impossible for me to do what I always do. There would be no lying since I had basically asked to be held accountable. The owner told me that she had just the person for me, and I scheduled an appointment with Alison.

During my first appointment with Alison, I jokingly said, “I might have a touch of OCD.” That, combined with what she had noticed prompted us to start some testing. Shortly afterwards, I was officially diagnosed. Finally, there’s a reason for my years of anxiety. There is a reason that I’ve counted all the steps I take, only listen to the radio with a volume of even numbers or multiples of five. The thought that I might walk too close to a height and accidentally jump off of it has prevented me from going to the second floor of our mall. Because my symptoms aren’t like that of the tv character Monk, I didn’t really think OCD would be my diagnosis. Chronic hand washing is not my thing. You won’t see me checking a lock repeatedly. But still, my diagnosis is very real and came as a huge relief.

I’ve been in therapy for only six months and have already had a significant improvement. We’ve worked on one issue at a time – the ones that are the most troublesome for me.

Now that this is out there, I intend to treat it like any other condition I deal with. I welcome questions and am always happy to talk about my own experience with anxiety and OCD.

According to the National Institute of Mental Health, nearly one in five U.S. adults live with mental illness. There is no shame. No one is ashamed of a broken leg or a bout of the flu. Why should we feel embarrassed by this?

If you struggle with anxiety, depression or any other conditions that cause you concern, reach out for help. The National Alliance on Mental Illness (NAMI) has resources and can point you in the right direction.

Thursday, May 9, 2019

Have you been affected by step therapy?

Last week, I had the opportunity to go tell my story to my lawmakers. Before last Thursday, I did not truly understand the impact I could have regarding our state laws. It was a fascinating look into our state policy.

The General Assembly of North Carolina was voting on House Bill 450, Reduce Barriers to Improve NC Health & Safety. One purpose of this bill is to ensure the proper administration of step therapy protocols for prescription drugs.

Participating in patient advocacy plays a much more important role than I ever realized. Lawmakers may have no connection to our concerns. If they haven’t previously struggled with a chronic illness that requires expensive medications, why would they have any knowledge of my experiences? If we, as patients, allow our voices to be heard, we know we’re working to improve the laws and create a better future for ourselves.

Advocacy Day was much more captivating than I ever imagined. I had an opportunity to meet people with similar interests. There were patients from multiple organizations – National Psoriasis Foundation, Arthritis Foundation along with several others. I had face to face meetings with my House Representative and my State Senator. Surprisingly to me, they were both interested in hearing my story.

If you would like more information on how to get involved in patient advocacy, I’d be happy to try to point you in the right direction. It’s rewarding to know you are part of the solution!

Have you been affected by step therapy? This video provides an informative and not boring explanation.

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...