Constant P Revelation

When I think of all the medications I’ve taken over the last 15 years, I imagine every pill and IV drip stacked on top of each other, row upon row of every colour and size like gleaming, sterile fingers rising higher with every dose. I like to speculate that it would fill a small room, one that I could peer inside, then say to my body with mixed awe and concern, “damn, girl, you took ALL THAT and you’re still here?”

I don’t actually think there would be enough to fill a room, but it feels like that sometimes.  I’m sure my liver would agree.

Plaquenil, my ever “Constant P,” was the first medication prescribed to me in 2001, and if I’ve done my math correctly, I’ve taken approximately 10, 950 doses. Also called hydroxychloroquine, this anti-malarial is used in lupus patients for long-term care. According to Molly’s Fund, anti-malarials are a sort of “lupus life insurance,” a disease modifier that  decreases pain and swelling, and prevents joint damage and disability. Studies have shown that patients on anti-malarials live longer than those who are not. 

Some of the side effects are also lupus symptoms, so I’ve never been 100% sure if I’ve had any.  A few months ago, I noticed the pigmentation of some of my toe/ finger nails had changed. A nail bed would have one or two long, black, vertical lines.

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I looked it up and was disturbed to discover that this type of nail discolouration can be an indicator of skin cancer. I went to the walk-in immediately, and was referred to a dermatologist. To my relief, she concluded that I have longitudinal melonychia, which can be physiologic due to darker skin, or due to prolonged use of Plaquenil. She explained that my lines were light black and did not run into the skin, and therefore, not a sign of cancer. If the lines are solid black and continue into the skin, then there is reason for concern. Since I have darker skin, I’m not entirely sure if the pigmentation was due to Plaquenil, but I knew I had to spread the word that it could be in others. So, to all you long-term “Constant P” users, keep an eye on your fingers and toes! Plaquenil induced longitudinal melonychia is harmless, but it’s good to be aware of medication induced changes to your body. It’s definitely something you should bring up to your rheumatologist at your next appointment and if you think it may be cancer related, visit your GP right away.

And lastly, if you haven’t checked them out already, here are two of my articles now available for viewing on the New Life Outlook – Lupus site. I have an article due next week on pain management options, so I’m excited to share that with you soon!

  1. How to Combat Morning Lupus Stiffness – Combating morning lupus stiffness is a proactive battle that happens throughout the day, not just in the morning. Take these steps to fight stiffness today.
  2. Staying Positive with Lupus – It’s normal to be frustrated with your condition, but staying positive with lupus is important for both our mental and physical health.

 

Lupus and the Benefits of Journaling

I’m excited to announce that my most recent New Life Outlook article is now online! As a journaling junkie of 23 years, I jumped at the opportunity to explore the benefits of journal writing for people with lupus.

How do you purge your lupus lamentations? Are you a journaling junkie like me? Click below to read my full article on the healing potential of journaling:

I hope you enjoy the article! I’ll be writing about managing/ combating morning stiffness in my next NLO contribution.

As a teaser for my next post, I’ll share that the 14 year span of being on Constant P (plaquenil) without any noticeable side effects has recently come to a surprising end. Nothing serious, but definitely worth sharing! My Constant P revelations are coming soon!

Happy weekend, everyone. I hope it’s filled with long naps, delicious treats, and the space and time to fill a journal page… or two!

Goodbye, 2015!

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While writing my latest article for New Life Outlook on the benefits of journaling, I realized that when I reflect, I prefer the least amount of structure, and most often, I don’t journal at all. It’s just me, my cup of tea, and my random, scattered thoughts. So, I thought I would change it up and mark the end of 2015 with some structured contemplation. Yes, that’s right, the year-end questionnaire! After browsing a few sites, I decided to combine some of HubPages’ Year End Review health questions with their general review questions. Why? Because life isn’t just about managing lupus!

  1. What was your favorite exercise this year? Taking long walks in the park/forest (but not during peak sun hours, of course!)
  2. What medications are you currently taking? Plaquenil
  3. How did you manage your stress this year? Ginger tea, treats, a blanket, and a Netflix or reading binge
  4. What was your biggest health achievement this year? Discovering on December 23rd that due to my stable health, my next rheumatology appointment will be in ONE YEAR. It’s the longest I’ve gone between appointments!
  5. What do you wish you would have done differently in regards to your health this year? I wish I would have defeated my inner night owl more often, exercised more consistently, and said no to all that Halloween chocolate that led to two months of eating and feeling terrible.
  6. What did you do this year that you have never done before? I did a theatre performance in a moving elevator!
  7. What one word best sums up and describes your experience last year? Surrender
  8. What was the biggest risk you took? Quitting my job of over ten years.
  9. What are you most grateful for this past year? The fact that my lupus continues to be stable, the support and love of my family and friends, time with my nephews, the opportunities I’ve had to do what I love, and the freedoms I have living in Canada.
  10. What do you wish you had done more of? Writing
  11. What do you wish you had done less of? Procrastinating on the internet
  12. Knowing what you know now, if you could write a letter to yourself that would travel back in time so that you would receive exactly one year ago, what advice would you give yourself? Stop doing too many things at once! Don’t procrastinate. Be confident – you are on the right path. Don’t be afraid to let go.

What were you asking yourself as the year came to an end? Share your answer to your favourite question from the list above. I’d love to hear how you’ve been feeling about your triumphs and challenges from the last 365 days!

A quick update regarding the Make Great Light draw from last post. Unfortunately, there were no entries, which I assume is because you have the same problem as me and don’t have the right type of lighting to try out the filters! Regardless, I want to send out a big thank you to Make Great Light for generously offering a free filter and for offering a discount to people with UV-sensitive lupus.

Also, a head’s up that the New Life Outlook article I mentioned will be online in mid-January. As a huge journaling geek, I had a lot of fun writing this one. I can’t wait to share it with you!

There are also a few more additions to Face Forward’s Links page for you to check out. Are you writing about your lupus journey? Remember, getting your name added to the list is as simple as commenting on this post or emailing me at elena@lupusfacefoward.com!

Happy Day 1 of 2016, my friends. Wishing you all good health and happiness!

Indoor UV Effects (& Light Filter Giveaway!)

When I was working long hours in an office, I would squint suspiciously at the harsh fluorescent lighting above me. According to Molly’s Fund, 40-70% of those with lupus will notice an increase in lupus symptoms or the severity of symptoms after exposure to UV (ultraviolet) rays. This can come from both natural and artificial lighting – like fluorescent bulbs.

These days, I work out of my home, so when Make Great Light offered me an opportunity to try their fluorescent light filters, I didn’t have the right kind of lighting to test it out. Fortunately, thanks to the generosity of Make Great Light, I’m able to offer a special giveaway for one lucky reader to try it for themselves!

Make Great Light‘s fluorescent light filters convert harsh fluorescent light to full spectrum lighting, filter out UV, and eliminate glare. Here is a fun, short video that explains how they work:

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Make Great Light’s Tube Filters

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Make Great Light’s Overlay Panels

So, how does the giveaway work, you ask? Simply comment by clicking the speech bubble at the top of the post and tell me how fluorescent light affects you and where you would use your fluorescent filter if you won it. The winner will be drawn on December 9th, so you have one week to get your comment in. And if you don’t win the draw, Make Great Light happens to be a big supporter of their local lupus foundation chapter and offers a 20%  discount to anyone with lupus!

The giveaway starts now, so get your comments in for an awesome chance to try Make Great Light‘s fluorescent filters for free!