Sunday, July 31, 2011

Humidity Is My Kryptonite

Undoubtedly the best part of writing this blog has been connecting with so many incredible people. If you'd like to know more about them, take a look back on all 20 spotlights written thus far. While it saddens me that these friends also cope with pain and illness, there is tremendous strength when we all come together. I see these relationships as a crucial silver lining to living with chronic illness. I'm now part of this extraordinary circle; a group committed to sharing our stories, spreading awareness, and instilling a vital sense of hope and belonging in each other. Because of their honesty and empathy, my experience is normalized. For the first time in my life, I'm reminded every day that I'm not alone.

I've connected with many of these friends on Facebook, and lately I've seen many comments about the humidity. Unless you're living with an autoimmune disease, you may never understand the impact that weather patterns can have on the body. I've joked that I could be the world's best weather forecaster because, as a storm develops or humidity builds, my joints announce it loud and clear.  I've never been more sure of that fact as I was last week. The humidity was at an all-time high in our area and suddenly my pain returned. It was deep, burning pain and, for the first time, I noticed swelling throughout my body (mainly in my legs). Prior to this week, my health was stable, my pain was low, and I felt grateful for this relief. I still pray daily that my Orencia infusions keeps working like it has, but even Orencia isn't a match for the weather this summer.

More than ever, I'm sure that humidity is my kryptonite...yep, I'm talking about the same radio-active element that can defeat Superman. This may seem dramatic, but humidity truly has a crippling effect on me. Last weekend, for example, John and I (finally) enjoyed a lazy morning together. I was feeling well throughout the morning, so when he suggested walking to a nearby diner for brunch, I didn't think twice. However, as soon as we stepped outside of our air conditioned apartment, my joints quickly retaliated. With each step, the pain intensified and spread. When we made it halfway down our street, my knees and ankles were aching and becoming increasingly stiff. By the time we reached the diner, I was holding onto John for support and struggled to climb even a few stairs into the building. I've never flared up that quickly and it was pretty shocking to both of us.

This experience brought back to a time when my pain was unrelenting, and it definitely threw me for a loop. I started silently panicking and fighting the "blues", wondering if perhaps my medicine was failing again. I needed some reassurance and my friends were there. They reminded me that, no matter how bad I was feeling, there would soon be better days. They shared their own struggles and filled me with hope; something that all-too-quickly dissipates when I'm in pain. Thank you all for being there.

How have you guys been feeling this summer? What makes your pain worse and what makes it better? I know it's tough dealing with the uncertainty, but through the ups and the downs, the summer and the winter, take comfort in the fact that you're never alone.


Tuesday, July 26, 2011

Living With Psoriasis: Question & Answer With The Incredible Elizabeth Menduke

To my favorite readers,

I just wanted to take a moment to say that I hope you're all having a fantastic summer. As always, I'm so thankful that you've chosen to read along; this blog truly wouldn't be much without you guys. That being said, please don't hesitate to introduce yourself if you haven't already. I love hearing from you, getting to know your stories, and inevitably being inspired by each one of you.

Speaking of inspiring... today's post is about Elizabeth Menduke. Having lived with Plaque Psoriasis (a chronic immune-mediated skin disease) for over two decades, Elizabeth has finally found a successful treatment to control her symptoms. As a result, she has regained her self-confidence and is able to have simple, but profound experiences again such as travelling, meeting new people, and proudly shaking hands with others; actions that others may never think twice about. For Elizabeth, these experiences were victories and she was determined to help others living with psoriasis. 

August is Psoriasis Awareness Month and what better way to kick it off than sharing an interview with Elizabeth herself? Enjoy!

  1. What is your diagnosis? When were you first diagnosed and how old were you? 
My diagnosis is plaque psoriasis and I was first diagnosed when I was 21 years old.

  1. What would you tell someone who has been newly diagnosed with psoriasis and/or a chronic illness in general?
My advice to others who are living with a chronic illness such as psoriasis is to continue to live their life as normal as possible. You are not the disease; instead you are just a person who is living with this disease. Stay positive, do research, find healthcare professionals that you trust, and do everything you can to maintain normalcy in your life while focusing on all the positive aspects in your life.

  1. Please explain a bit how your condition affects you. (For example: What are the symptoms and what is the hardest to cope with? Has the disease changed with time? etc.)
My psoriasis condition has affected me differently depending on the severity of the disease. There have been times in my life where my psoriasis has been truly horrible and covered a vast majority of my body. During those times, I experienced severe pain from my skin cracking, itching, and overall embarrassment of my condition. At these times, my self-esteem was at its lowest. I only wore long sleeves and long pants to cover up most body parts. I was uncomfortable going to a hair salon, nail salon, the beach, the gym, or any place where people would be able to see my severe psoriasis symptoms.

Then there are times like now; however, where I have found the treatment that has caused a great improvement of my psoriasis. I am grateful to the advancements that have been made to help treat my condition and I am now benefiting greatly from a biological drug called Stelara. I get an injection four times a year and my skin looks almost normal. I am able to do the things that used to make me feel uncomfortable when my skin was bad.

  1. Where do you get your strength?
I'm not sure where I get my strength. I think I've had to do some work on myself because I wasn't always strong. Living with a chronic illness such as psoriasis can really get depressing sometimes.  I guess my strength comes from realizing that there is always somebody worse off than you are and you need to just be grateful to be exactly where you are in life.

  1. What are you most proud of?
When it comes to my psoriasis I am most proud of a speech I once gave at a hotel in Los Angeles where I spoke about psoriasis to an audience of healthcare professionals and other psoriasis patients. I was asked to speak by the National Psoriasis Foundation (click here to reach their Facebook page and here to reach their twitter page). At the time I gave this speech my psoriasis was fairly active. I wore a sleeveless shirt with a blazer over it and when I got up on stage I felt nervous to speak in front of this large crowd. Towards the end of my speech I said "as a sign of hope and solidarity amongst us all, I am going to stand up here today and remove my jacket. I feel safe letting you see my skin." When I removed my blazer the crowd applauded so loudly that I wanted to cry. Afterwards, patients in the audience came over to me and said that I helped them and gave them hope. Some were even crying. This was a proud moment for me.

  1. What are three things you couldn't live without?
The three things I could not live without regarding my psoriasis are:
    • I couldn't live without my dermatologist
    • I couldn't live without Stelara
    • I couldn't live without a good moisturizer

  1. How do you manage and cope with your psoriasis?
I moisturize my skin thoroughly when I get out of the shower every day. I stay on track with my Stelara injections. I try to get sun when I can because that seems to help me as well. If I'm asked to help someone who has psoriasis I always do so because that in turn helps me.  In the past I often felt uncomfortable in relationships because of my skin and that was sometimes hard to cope with.

I have been in a relationship with a man for the past six years that is going really well. On one of our early dates I decided to tell him about my skin and show him my psoriasis. I pulled up my sleeve to expose my red, scaly patches and he looked at me and I wasn't sure what he was thinking. Then, he pulled up his sleeve to show that he had psoriasis too! I couldn't believe it and this is made coping with my psoriasis quite a bit easier because we can lean on each other.

  1. If you could send one message to medical professionals around the world, what would it be?
My message to medical experts would be to be honest with your psoriatic patients about this chronic condition and to stay on top of new developments and treatments that give their patients hope. If you are not familiar with new developments and treatments for psoriasis please refer your patients to a dermatologist that is.

  1. In honor of Psoriasis Awareness Month...if you could send a message to the world about Psoriasis, what would it be?
I would like to ask the world to be tolerant of people who live with psoriasis. It's not contagious, you can't catch it, we can't help that we have it, please accept us. It would be wonderful if Psoriasis Awareness Month actually did make people aware of what psoriasis is all about because if people were more educated about this disease and what it is and isn't, it would make life a lot easier for those of us who have it. Psoriasis is not who we are.

Thank you so much for sharing your story Elizabeth! You're amazing...


Friday, July 22, 2011

Amazing New Giveaway! Turn Your Photograph Into A Customized Stamp

I could spend hours on perusing various hand-crafted gems, and actually I did just that the other day. I fell in love with Leila's shop, and especially her customized portrait stamps (shown above) made from YOUR special photos. Imagine a personalized stamp of you and your sweetheart? With love on my mind lately, I think it would be a perfect way to add that unique touch to cards, invitations, thank you notes, decorations, or wedding favors. The photo could be just you or you with a family member or a friend. It would also make a pretty incredible gift for someone in your life. Sky's the limit, really!
Now meet the wonderful Leila! Here's what she had to say about her artwork...
"My creativity inspires me to make the most unique, personalized items that people will talk about for years and years.  In everything I make, personalization is key. The only way to do that is to make it yourself.  I focus on creating designs that are outside of the box.  Adding a custom touch to all of my handmade creations (invitations, cards, stickers, decor, etc.), is really my passion. 

Leila & her fiance
Throughout the years, my family and friends have always given me the task of constructing a one of a kind creation for various special occasions, making these events more memorable. After planning so many bridal showers, birthday parties, baby showers and now my own wedding, I have learned that giving your guests a handmade invite or creating a personalized centerpiece, leaves a lasting impression.  That is so rewarding to me and that is the reason why I decided to open up my services to others who also see the importance of customizing their special day with a unique touch.  I absolutely LOVE working with people who have a vision, but just need a little help in making that vision come to life.  That's what I am hear for and I welcome all ideas!

Lucky you! You can enter this giveaway a total of 2 times!

For entry #1: Tell me what your personalized stamp would look like! Where and how might you use it?

For entry #2: Head over to and "like" my page, Loving With Chronic Illness! If you already do, then you're awesome :) Just let me know in a comment and you'll get the second entry.

You can enter this giveaway until 11:59pm on August 5th (2 weeks from today). A winner will be chosen at random and announced the following day. Good luck, my wonderful readers!


Wednesday, July 20, 2011

Planning A Wedding With Chronic Illness

It's funny...since summertime is "wedding season", I was working on this blog post well before John proposed to me! Now that I'm engaged, this topic is very much on my mind. Since attending my brother and Erica's family wedding last year, I've been enamored with the idea of a small celebration; an intimate venue where we could enjoy each of our guests to the fullest. But there are so many people who we love and who have supported our relationship over the years. As John and I tried to picture our special day without them, we really struggled. Each of these people have helped us become the couple that we are and, in our eyes, a wedding is way to celebrate and honor their place in our lives. A "thank you", if you will. Furthermore, it would be a gathering point for our two families, who live over 6 hours apart.

An ongoing theme on this blog is enjoying life to the fullest and savoring small joys (take this May post entitled Always Remember To Celebrate). Each of our families have had enough hard stuff to cope with over the years, and I'm sure there will be plenty of struggles in our future. So why not embrace this reason to celebrate? Why not gather our family and friends together for a purely joyous occasion? The decision to have a wedding seemed clear and extremely exciting when we looked at it this way. And, thus, the wedding planning has begun!

No matter how pleasantly distracted I've been, my health needs to remain my top priority. While it's tempting to put medication schedules, doctor appointments and IV infusions on hold right now, I need to remember that a sure-fire way to ruin our big day is making myself sick. If I ever forget that, Spondylitis and Fibromyaliga are right there to remind me (as they have these past few days). I don't have the option of cutting them from our guest list. Thus, I'm faced with a choice: let that fact impact this happy time and become bitter, or accept it and be creative about planning our wedding.  I choose the latter option because we deserve this happiness.

I've been exploring several bridal websites, including one called "A Practical Wedding." The site is run by Meg Keene and it's all about "balancing feminism with weddings and married life; about wrestling with the cultural dialogue surrounding weddings and marriages; and about figuring out how to be a bride and a wife on your own terms. Meg's first book, A Practical Wedding: Creative Solutions for a Beautiful, Affordable, and Meaningful Celebrationwill be released by Da Capo Press in January 2012."
The site has so many amazing articles on all sorts of topics - from picking the "right" kind of wedding for you and your fiance to blending two families. If something is on your mind, there's a good chance it's there! Meg also has some pretty great philosophies when it comes to planning a wedding (scroll down for a comprehensive list).
As I searched the site, I took particular interest in this article for obvious reasons: Planning A Wedding With Chronic Illness. The author Hannah (pictured with her husband to the left) wanted to help other brides know"how to plan a wedding when your health is unplannable." That line alone says it all. By officially setting a date for our wedding, John and I will be committing to this one unchangeable day; this one date when our dream venue will belong to us; when everyone we know and love will travel just to see us. While all of that is very exciting, I can't pretend it's not a little scary. More than anything, I want to feel my best on our wedding day, and I'm well aware that I may not. This article has some basic, but very important reminders for brides like me.
Here is yet another great article I found on "A Practical Wedding" entitled "What Diabetes Taught Me About My Marriage." The author speaks about life after the wedding and after developing a chronic, life-changing health condition. She writes about the struggle, but focuses on the strength it brought to her and her marriage. I'd be willing to bet that this piece will inspire you.

Here are a few excerpts representing Meg's philosophy on weddings (all of the links lead to more great articles):
Weddings can be laid back, and fun. No really.
Your wedding should be about celebration and joy, not about a bunch of made up "shoulds."

Tuesday, July 19, 2011

Announcing The Winner Of Giveaway #6...

I want to thank everyone for participating in my Embroidered Dog Collar Or Leash Giveaway! If you haven't already, take a look at all of the amazing entries under the original post. I loved hearing stories about the special pooches in your lives! It's clear just how much we cherish our furry friends and how much they love us back. Through thick or thin - sickness or health -  they're always there, and I'm more sure than ever that dogs are just the greatest.

There could only be one winner for the giveaway, but I do hope you'll all keep playing along! I have lots of amazing giveaways lined up in the coming weeks. has selected one lucky winner...


Congratulations!!! Just e-mail me at confirming the exact customized dog collar or leash that you'd like. You can check the original post for all of your color choices.


Thursday, July 14, 2011

Exclusive Interview With Jackie Warner: Bravo's Fitness Celebrity & Creator Of "Fit In Your Skin"!

Today's post is about Fit In Your Skin, a new health and fitness program designed specifically for people living with Psoriasis. This initiative provides patients with important resources to help them become more physically active and improve or maintain their overall health. Click here to read a press release about Fit in your Skin which was created by Jackie Warner, celebrity fitness expert, trainer, and author of This Is Why You're Fat (And How to Get Thin Forever). I recently had the exciting opportunity to interview Jackie about her new program, so please check out the Q&A below!

Maya: How did you go about developing the appropriate program and how does it differ from a “normal” workout routine?

Jackie Warner: Last year, I teamed up with the National Psoriasis Foundation and Dr. Paul Yamauchi to create an educational campaign called Fit in Your Skin ( ™), which is the first-ever health and wellness program designed specifically for people living with psoriasis. People living with a chronic health illness, such as psoriasis, often experience challenges when trying to exercise due to symptoms of their disease, which may include skin plaques, inflammation and scaling. The Fit in Your Skin workout video includes modifications for certain exercises, taking into account these specific challenges, so people with psoriasis can still get a great workout! 

It’s important to note that the program itself is based on extensive research that indicates people with psoriasis are at a higher risk than the general population for other diseases like heart disease, obesity and depression. Just this year, a recent study published in The Archives of Dermatology found a link between people living with psoriasis and metabolic syndrome, particularly those with abdominal obesity. So this reinforces the importance of a program like Fit in Your Skin in helping people with psoriasis to adopt or maintain a well-balanced and healthier lifestyle while managing their disease.

Maya: What advice would you give to patients with Psoriasis or other chronic illnesses who are just starting to work out? Do you have any tips to get motivated?

Jackie Warner: Before starting a workout routine, it’s very important to consult with your physician to determine if Fit in Your Skin or another program is appropriate for you. With regards to motivating tips that will get you started, a positive mindset with dedication to getting (and staying) active are key elements in achieving your fitness goals. For those afraid to exercise due to symptoms from psoriasis, or other chronic illness, here are some other suggestions:

  1. 1. Declare that it’s time to get fit and healthy – try putting a note on your refrigerator or in a journal that reminds you of this promise to yourself.
  1. 2. Start out small and work your way up. When it comes to working out, it’s not how long, but how strong.  So pop in your Fit in Your Skin DVD and make a commitment  to work out just 30 minutes at a time a few days a week to  start.
  1. 3. Be good to yourself. If you miss a day of activity, don’t beat yourself up.  Just start again the next day. Take it slow and steady and eventually fitness will become part of your routine where you will want to do it more often.
  1. 4. As you increase your fitness level and interests, continue dialogue with your physician to update your exercises based on your symptoms and condition.
  1. 5. Find a music playlist that keeps you energized and excited – you can check out some of my favorite tunes on the Fit in Your Skin website.
    1. 6. Recruit a family member, friend or colleague to join you on the journey.Together, you can stay focused and inspired while on the road to adopting a healthier lifestyle. 
Maya: As someone living with a severe form of arthritis, I avoid exercise mainly because I fear overextending my body, hurting myself or promoting a flare-up. Is there anything you might advise a patient with chronic illness to avoid doing?

Jackie Warner: For those with chronic illness, I can’t emphasize enough how important 
it is to have open and ongoing conversations with your physician to discuss your exercise goals and potential limitations.  By working closely with your doctor, you can establish a plan that is customized for your health needs, and he/she may suggest working with a fitness trainer or physical therapist that specializes in chronic illness to help prevent potential injuries to your body. Also, ease into physical activities slowly and maintain a training log. You can download the free fitness log available at Fit in Your Skin™ to track and monitor your activities.  

Maya: How would one differentiate the pain of illness from the normal and good "pain" of working out? What is the best way to identify our limitations and/or signs that we might be "over-doing it"?

Jackie Warner: You know your body best, so as you begin to exercise and experience pain that you are unfamiliar with or continues for several days, tell your doctor immediately. Also be sure to start out slow, follow proper form and gradually progress the difficulty of your workout. Through all modes of exercise, even stretching, pay close attention to how your body reacts to specific exercises. Because disease symptoms vary between individuals living with psoriasis or a chronic illness disease, I encourage that you continue to modify the exercises so that they address your fitness needs without causing injury or discomfort. For example, an individual experiencing a severe flare-up should modify their exercise routine and be very cognizant of how they’re feeling in order to best convey the type of pain to his/her doctor. 

Maya: Research has shown that exercise can help with symptoms of fatigue - a common issue for people living with chronic illness. Can you please discuss how this works?

Jackie Warner: There is much research under way to help show that regular exercise can increase energy levels of people suffering from chronic health illnesses, and food impacts energy levels as well. This is of deep interest to me since I’ve worked closely with the psoriasis community through Fit in Your Skin, and many of my clients have autoimmune disorders, so we measure energy levels regularly. In terms of exercise, people often think that working out makes you tired, or fatigued; however, working out for even a few minutes per day, low to moderate intensity, actually helps boost energy levels, which help your body become a fat-burning machine rather than a fat-storing machine. I always recommend taking small steps, and also following a healthy diet filled with omega-3 fatty acids, like avocado or walnuts. For people with Chronic Fatigue Syndrome (CFS); typically, you feel inexplicably run down and un-refreshed by sleep, possibly not having the energy for exercise, and will want to eat more. Sugar throws off your immune system and can make you feel tired, so I suggest eliminating it as often as you can and track your energy levels to test this theory.

Jackie: It was an honor to write this piece. Your passion is clear and I thank you for all of your thoughtful words.  Thank you also for recognizing a need for this program and working to improve the lives of chronically ill individuals. You are truly an inspiration to all of us.