Wednesday, June 26, 2019

Get involved with your chronic disease community

Not long ago, I read a quote from Gloria Steinem that helped me realize where I am in this chronic disease journey. “The final stage of healing is using what happens to you to help other people.” While I still have pain and fatigue, both symptoms of my psoriatic disease, I rarely feel self-pity or mourn for the life that I could have had. In many ways, my life is better because of my journey.

When my symptoms of psoriasis and psoriatic arthritis started at 23 years old, I felt my share of self-pity. I was sad and angry that I couldn’t do things other people my age were doing. My life was not fun in any way. Not only was it a struggle for me to work but it was a struggle for me to put my clothes on and brush my teeth and hair. It was a struggle for me to walk outside and get into my car. Honestly, I didn’t know how long I would be able to keep up with this struggle. I worried that I would have to leave my job, and then what would I do? These feelings of self-pity and anger probably continued, at least to some degree, until my daughter was born in 2002. After she was born, I was too busy and too tired to feel sorry for myself.

Throughout Nora’s childhood, I figured out how to manage my own symptoms with the active lifestyle requirements of a little girl. My medicine was working well for me and I found that I was able to do what I needed to do with a few accommodations. (If you thought your manager didn’t understand your necessary ADA accommodations, try negotiating them with a toddler!) Then she became a teenager. And then started driving. I found that I had time on my hands that I had not had in many years. That’s when I decided that it was time to give back and help someone who is new in their own chronic disease journey.

Everyone with psoriasis knows about the National Psoriasis Foundation (NPF), but since I hadn’t had much time to think about my own issues, I had not really been involved with them. It turns out, they are a very active group! My husband and I drove up to Washington D.C. to participate in a walk with the NPF. Everyone I met said, “are you going to the National Volunteer Conference next year?”  At that point, I was hardly a volunteer. I raised money for our walk in D.C. (I was second top individual fundraiser and got a certificate that says so!) How did that qualify me as a volunteer? But I thought about it. I knew I wanted to get more involved in volunteer work. And then I got a scholarship to attend. The moment I arrived at the conference hotel in Chicago, I knew I was with my people. The sessions were outstanding. People shared their volunteer experiences. I was energized to make a difference.

Immediately after the conference, I reached out to the volunteer coordinator and told her that I wanted to be a one to one mentor. She had me complete an application and I soon got word that I was accepted. A small group of us participated in an online training and I was off and running. The more I got involved, the more opportunities came to me. Through my mentor portal, I learned about a couple of different patient advisory boards, which I was able to travel to. I applied for and was accepted as a Psoriatic Disease Research Ambassador. Most exciting for me is finding opportunities to share my story.

Are you looking for ways to get involved and give back to your community? There are so many ways that you can do it and your path to involvement does not have to look like mine. Maybe you aren’t the extrovert that I am and just want to work behind the scenes. I don’t know of a single non-profit organization that does not need volunteers. Even if you’re working with a national non-profit there will likely be opportunities to get involved at a local level.

If you are comfortable speaking to people and telling your story, I encourage you to do that. Whether you have psoriatic disease or have another battle that you struggle with, awareness is the key to creating normalcy. On two separate occasions, I have shared a speech with my colleagues to prepare myself for an upcoming public speaking event. Both times, my reward was so much greater than the practice I received. I was able to finish those talks knowing that I had taught my co-workers something, both about myself and about my disease. It was also obvious that I had gained their compassion and understanding.

My skills and interests are in sharing my story and talking with other people about their stories, but I promise you that this is not a requirement for helping other people. If you have reached that final stage of healing, or if you know you’re ready to be in that final stage, I encourage you to get involved. Find out just how good it feels to help someone else.

Sunday, June 16, 2019

Arthritis meds should make you feel better, not worse!

What a week! I’m glad to be on the other side of it! I had a major arthritis flare unlike any I’ve had in a long time. Pain relief finally came around but things still got worse before they got better. You see, I made a rookie mistake. I took my methotrexate on Saturday morning instead of waiting for bedtime.

Methotrexate is an add-on medication for me, and for plenty of other arthritis sufferers. Some people take it on its own, but many of us take it in conjunction with our biologic drugs. This medicine is also used for cancer, but in much higher doses. Still, it can sometimes cause some awfully unpleasant side effects.
The crazy thing is that I was aware of these unwanted side effects because I’ve had them in the past. This is not my first rodeo; I knew better than to take this in the morning. But, you can’t untake an injection. So, I was left to suffer with some pretty miserable GI symptoms all day yesterday and spent a beautiful and sunny afternoon at home in bed.

While I was laying in bed thinking about how bad I felt, I started thinking about all the people who are told by their doctors that they need to start taking methotrexate. What would I want to know if this medicine was newly prescribed to me.

I have a few tips, but I knew that my friends at the Psoriatic Arthritis Support Group on Facebook would have many that I had never even thought of. So, here they are…our tips for taking methotrexate without feeling like crap!

  • Dose up just before bed. I’ve never had an upset stomach when I go to bed just after taking it.
  • Methotrexate is available as a subq injection or as an oral medication. I take the injection because my doc told me it’s easier on the stomach. Others in the PsA Support Group on Facebook recommend the injections, too.
    • If you need to take the oral formula, Caitlin McCoy recommends that you drink lots of water two days prior to taking the pills. Then take the methotrexate with food. Take probiotics and avoid the sun and heat.
  • Take folic acid every day. This helps fight off those feelings of GI upset, mouth ulcers and icky feelings that come with methotrexate.
  • Avoid alcohol as much as possible. Methotrexate can be hard on the liver and so can booze.  Your doctor should require regular blood monitoring just to keep an eye on your liver. I will have a drink every now and then, but I recommend that you consider your health before drinking to excess on a regular basis.
  • Leticia Keener says that ginger root is helpful in fighting methotrexate related nausea. If your GI upset is particularly difficult, talk to your doctor about a prescription medication. There are also prescription medications that your doctor may be able to give you if ginger doesn’t help.
  • There are a few folks who say that the only thing that helps get past the side effects of methotrexate is cannabis. Apparently, a little is all you need to resolve the headache, stomach cramps, diarrhea and nausea. Good to know!

I’ve found to be methotrexate a very beneficial medication that has been used for many years. I will continue to take it, but you can be certain that I will never again take it early in the day.

What do you do to prevent symptoms?

P.S. Now seems like a good time for a quick reminder. If you want to abbreviate methotrexate, it’s MTX and NOT Meth. That’s something else. 😊

Friday, June 7, 2019

A Rough Morning

To most,  a rough morning means maybe not having any coffee left or being late to work. To me, a lot has to happen for it to "qualify" as a rough morning.

This morning, I woke up around 10. I was hungry, so I went to the kitchen and made myself a bowl of cereal. Usually, mornings are hard for me because I have to wait for my medication to kick in. This morning was unusually difficult. By difficult, I mean the worst I have felt in a long time. I usually lose my hearing and vision when I first stand up, but this morning, it didn't fade. I have gotten good at listening to my body and knowing what to do to make myself feel better. But today, my symptoms continued to get worse and worse.

When I was younger, I most definitely considered myself a clumsy person, but I have gotten less clumsy over the years. Of course, I still have my moments, but nothing like this morning. The way I felt is very hard to put into words. My ears started to ring, my mind started getting very cloudy. I opened the fridge and grabbed the milk. I poured it into my bowl of cereal, and dropped it... twice. I have never been so far from reality. I lost the cap and still ave no idea where it is, yet I put the milk back into the fridge and left the milk on the floor. I continued to feel worse and worse, so I sat down on the ground. I feel that it is important to know that none of this is like me at all, except sitting on the kitchen floor (that's too normal haha.) I also struggle with OCD and cannot leave things unfinished. When you take the cap off of something, when you finish, you put it back on. I would also NEVER just leave something I spilled without cleaning it up because that stresses me out!

As I sat on the floor, I still continued to get worse. Usually sitting or laying down helps my symptoms significantly, but not this morning. Molly, our dog, came into the kitchen and smiled at me and wagged her tail. Because I was so out of it, I completely ignored her (which is very hard to do because she is adorable.) I started to sweat and began to feel like I was going to vomit, also something I NEVER do. I went to the bathroom, leaving my bowl of cereal on the counter, milk on the floor, and ridiculously adorable dog in the kitchen. I sat in there until I felt better which likely took 5 minutes. This episode was likely one of the longest I have ever experienced. After I felt strong
enough to stand, I looked at myself in the bathroom mirror. I noticed that most of the color in my face was gone-- my lips and tan skin were pale. The last time this happened, as I was told, I passed out (due to something completely unrelated.) I walked into the kitchen and grabbed my bowl of cereal looking down at the mess I made on the floor. I set the bowl down and used all the strength I had to bend down and place a few paper towels over the milk (not very efficient I now realize but couldn't understand at the time.) I left a towel over the milk and went to my room to lay down in bed.

As soon as I got into bed, I texted both my mom and a friend who experiences almost the exact same things that I do. My mom worried, as she does, but I knew that nothing could be done to help me except laying down. My friend said, "oh my gosh. I'm so so so sorry. I know exactly how you feel." Although my mom doesn't directly understand/experience what I go through, she knows what it feels like to not have a body functioning the way it should. She's amazing at advocating for me and I am so grateful for her, but she also recognizes how lucky it is for me and my best friend to have someone who can sympathize AND empathize.

I knew that I shouldn't have just pushed through the discomfort this morning, but I am so used to losing vision and hearing momentarily every time I stand that I thought everything would be okay.
I need to learn to listen to my body better and ask for help when I need it. Asking for help has always been a tough thing for me, but I deserve it(:

Saturday, June 1, 2019

Staying Positive in Spite of Chronic Pain

One of the questions I'm asked most frequently is how I manage to stay positive in spite of my psoriatic arthritis. I've got a great life, an understanding family and a true work/life balance. One of the things that I say on a regular basis is how lucky I am, and I am very thankful for the good in my life. Still, positivity can be a struggle for me. Sometimes I have to make a conscious effort to be positive. Here are a few tips I can offer up for staying positive when dealing with any type of chronic pain.

One of the most important things that I do is see my therapist regularly. I haven't always really understood the importance of talk therapy. After all, I'm not shy and I don't hide my issues, so why not just talk to my friends about my concerns? Well, because they aren't necessarily equipped to offer impartial advice. They may not encourage me to really look for the ways that I contribute to my own issues. My daughter really encouraged me to see a therapist and I am so thankful to her for that.

I give myself permission to rest and do nothing, when it's possible. There is nothing I love more than a rainy weekend! That's because I don't feel any pressure to get out and see how much I can accomplish in a weekend when the weather is bad. Somehow, the rain gives me permission to lounge around all day watching movies and drinking coffee.

When I feel really good, I try to take advantage of it. In fact, if I wake up and have lots of energy and little to no pain, I might brush off my grown up responsibilities just to enjoy the fact that I can have some fun. Buying groceries and doing laundry can wait until another time.

While we're on the subject of postponing grocery shopping, you might wonder why I would postpone this for a time that I'm not feeling at my best. I have a little secret about this chore. I rarely step foot into a grocery store. Instacart has become my new best friend. When it's time for grocery shopping, I realized that I prefer to let someone else do this for me so that I can spend my limited energy elsewhere. The groceries are delivered right to my door! (If you want to try Instacart, use this link and we'll each get a $10 discount.) 
There are also times when I don't have the energy to cook - and also don't have the energy for my husband to cook (since my OCD won't allow me to rely solely on his clean-up.) At those times, I take advantage of Grubhub. This was a life saver to me after my total knee replacement surgery! (I also linked to a $12 Grubhub discount for each of us.)

Connecting with a group of people who have the same issues is very helpful to me. I love the groups that I participate in on Facebook. I've also gone to conferences and events that have allowed me to meet others with psoriatic disease. It feels so good to talk to people who really understand from a first hand perspective.

My pets are one of my key secrets to staying positive. My dog is always so happy to see me and lets me know it every time I walk in the door. My cat appreciates just sitting on my lap letting me give him the attention he deserves. It's hard not to be happy with these guys at home!

Because I've lived so much of my life with psoriatic arthritis, it's part of who I am. I could feel sorry for myself or I could find a way to make this the life I want to have, and I choose the latter. 

I want to be very clear that I've had arthritis for nearly 30 years and have gone through a range of emotions during these years. Please do not beat yourself up if it's not easy for you to remain positive. This is a serious disease that changes your life. Take time to mourn the life you thought you would have. After you've done that, I encourage you to make an effort to find the positive. It's still there. It's just harder to find. 

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...