Wednesday, August 31, 2011

And The Winner Is...

I've already announced today's giveaway winner on my Facebook page, but I wanted to make it official. I was thrilled to connect with Sherry, the owner of Mermaid's Dream on, and even more excited when she offered to part with one of her gorgeous clutch purses! As always, the winner was chosen at random...
Congratulations to "Cleverlikewoah"!!!

I haven't heard from you yet, so please e-mail me at Please include your choice of purse from Sherry's shop, as well as your mailing address. If I don't hear from you by September 14, I'll need to pick a new winner. Thank you for your understanding.

For everyone else - stay tuned for more amazing giveaway coming up soon! As always, thanks for reading

Monday, August 29, 2011

Finding Myself; Finding My Best Friends

The Beatles once told us that "love is all you need", and I tend to agree. That's why I choose to write about living and loving with chronic illness. Whether you're chronically ill or perfectly healthy, it's vital to nurture love in all its forms: love within our families, love between friends, romantic love, and love for the world around us. In my eyes, it's everything.

Of course it's all about balance, and for most of my life I didn't have it. I was the definition of a "bleeding heart", reaching out to anyone and everyone who sought my advice. I was deeply impacted by their struggles, but truthfully it also made me feel needed.  At the same time, I clammed up about anything "negative" in my own life. I suppose it just felt easier to focus on my friends' "normal" problems (stuff like bad grades and boy trouble) than my rare health condition. After all, my problems weren't going anywhere, and who could relate to them anyway? This was also a reflection of my self worth (or lack there of). Since I couldn't do many things like the typical college student, I already felt like I had several "strikes" against me. At the very least, then, I could be the "listener." Meanwhile, I wanted nothing more than unconditional love in my own life, but I had no idea where and how to find it.

It took getting sick to realize that I simply couldn't sustain these relationships, especially without getting much in return. The majority of my energy (or whatever was left of it) needed to go toward fighting my disease. I gave myself permission to stop hiding my reality, and those "friendships" that felt so one-sided? It turns out that they were. When I wasn't able to be the upbeat Maya they had always known, they faded away. During a time when I needed friends more than ever, they were nowhere to be found.
After college, I vowed only to invest in a special few; people who deserved my love and would offer it in return. Thanks to therapy and lots of soul searching, I realized I needed to let go of my fear - fear of rejection, fear of abandonment, fear of someone saying something dumb about my health. Only then could I be ready to pursue the "right" relationships. As always, my family gave me tremendous strength during this time, reminding me that I deserved only the best. 

As I made this transition, I focused on the most important relationship of all: the one I had with myself. I learned to cherish my own company, and even took myself on several "dates." (Before you laugh, go ahead and try it! For starters, you'll never fight over which movie to go see). As my self-esteem grew, I believe it helped attract the right people into my life. Finally I knew what I deserved and I began asking for it.

It wasn't long before I started cultivating new friendships. Although I still secretly feared overwhelming them with my problems, I was honest from the start. This time around, I knew myself and believed I had much more to offer than constant optimism. To my surprise, they truly wanted to listen... so I kept talking. As I maneuvered through my worst flare yet and struggled with even the most basic tasks, our bond only grew stronger. Through sickness and through health, they loved me for me. When I finally dared to be myself, these are the friendships that rose to the top; people who wanted to celebrate my successes and catch my falls. As sick as I was, I had never felt safer or more content in my personal life.
If I've learned anything from these experiences, it's that love shouldn't be given away freely. Okay - if we're talking in a biblical sense (as in "love thy neighbor"), we should all offer our help and compassion whenever possible. However, when it comes to our personal and enduring relationships, we have the right to be picky. Love - in its truest form - is special and asks something of us. Investing in any successful relationship takes time and energy...two things that are limited when you're living with chronic illness. If we learn to view our energy as a precious commodity (essential to loving, caring for our health, and everything else in our lives), then we'll be more mindful of how we spend it. Ultimately, it all goes back to the "golden rule." If we give a piece of ourselves to the people in our lives, it's critical that they know how to replenish our energy when the time is right. In love, as in life, balance is everything.

Friday, August 26, 2011

Actor & Comedian Jon Lovitz Opens Up About Psoriasis!

According to the National Psoriasis Foundation, "Psoriasis is the most prevalent autoimmune disease in the U.S., affecting as many as 7.5 million Americans. It occurs when the immune system sends out faulty signals resulting in red, scaly patches on the skin that bleed and itch. Psoriasis is not contagious. Psoriasis frequently occurs with a range of other health concerns including Crohn's disease, diabetes, hypertension, heart attack, depression and liver disease."

As I mentioned in this recent post, August is National Psoriasis Awareness Month. I couldn't let August come and go without writing about an awesome initiative by actor and comedian Jon Lovitz. Jon is most well known for his role on Saturday Night Live. What most of his fans don't know is that Jon has also been battling psoriasis for the past 10 years.

Jon has been courageously speaking out about his experience with psoriasis and his role in an education campaign called Are You Serious?. This program is aimed at raising much needed awareness about the disease. Jon has also developed public service announcements and a web-based song parody (a spoof on Maroon 5's "This Love") with the help of his friend acclaimed director Jerry Zucker. These tools are designed to use humor to illustrate the challenges of living with psoriasis, while reinforcing the importance of having open and honest dialogue about the disease with a medical expert. By no means is this meant to poke fun at the disease. Instead, Jon hopes to illustrate the severity of it and the emotional impact as well.

For every person who shares the video a donation is being made to the National Psoriasis Foundation. Also, make sure you check out Jon's parody video by clicking this link. Jon - thank you for having the courage to speak out about this sensitive subject and break the silence. Your work is infinitely important.

Wednesday, August 24, 2011

Guest Post: Fun & Creative Event Planning...With Chronic Illness!

Hey guys!! 

Kelby from Peachey Planner here. When Maya asked me to write a guest post about being an event planner, as well as someone who lives with a chronic illness, I got really excited! And then really nervous. This is my first guest post for another blog, so I’ll do my best and hope I don’t disappoint. I’m a 27 year old, who has been living with Ankylosing Spondylitis for the last 11 years of my life. YIKES!! However, I’m also a professional event planner and have been doing it for over 7 years! I plan, develop, create and execute any type of event. They’ve ranged from baby showers to corporate picnics; dessert tables to large gala fund-raisers for charity. Even a festival! I’m here today to give you a few tips of advice on how to plan your next event (regardless of size!) while dealing with a chronic illness. Here we go…

My first task for every event (and I highly suggest you do it too) is to write an extensive to-do list for your event. I love putting my list on pretty paper, using my favorite pen, and adding some decor. This will not only help you to want to look at the list, as well as not lose it, but ultimately will give you a perspective on what needs to be accomplished. So, how do you use the list? First, find out if you have enough time to accomplish 1 or 2 tasks a week before your event. I know when I divide out my tasks (even daily house chores), my flares stay away. Such an easy task, yet so easily overlooked. If you don’t have the option of tackling 1 task at a time, then the next tip will be beneficial (and somewhat crucial!)…

Don’t be afraid to ask for help! I know when I’m dealing with my disease, I have found it difficult to ask for help from others. After all, I’ve been told I’m in my “prime years” and should be able to do it all alone. It is possible, but if you're feeling overwhelmed, just reach out and ask for help. This will not only reduce your likelihood of having a flare, but you probably have family and friends who are actually eager to help! You may have an aunt who is outstanding at arranging flower decor or a best friend who is a great at creating handmade cards. Ask them if they would be willing to help you out. It will only make your memory of planning your event a pleasant one. Why? Because the people you care about the most are giving you a piece of themselves. What a wonderful way to make your event so special!

Not the creative type? That’s easy to fix. A great place to capture ideas is I am OBSESSED with this site! Its a great way to browse through the internet, create a dream board, and find creative ideas!

Let's talk VENUE! Often when I'm planning an event I like to utilize a city's visitor’s bureau website! They’ve proven to be a valuable resource for getting detailed information on all event friendly properties in the area. This will allow you to not only pinpoint venues that fit within your budget, but also have the quality and uniqueness you're looking for. Why do all the research when someone else has done them already? Plus, its free. :)

Now, onto CATERING! Did you know that 30% of your bill goes directly toward taxes and gratuity! WAIT, WHAT?! Yes, that’s correct…30% of your bill! For example, let’s say you have a $100 per person budget to feed everyone, that means $30 of it will go toward taxes and gratuity. So, really your budget just became $70 per person. This is a BIG deal if you are on a tight budget! Plan ahead, and know what you're working with. Another little idea is to ask if your caterer if they would be willing to serve your food family style. This usually cuts down on costs and planning time for your event, ultimately leaving you more time to relax and stay healthy! An added bonus? Sharing dishes has been known as a natural icebreaker. Not an option with the caterer? No problem! Ask if you can do the lunch menu instead. Usually the dinner menu is just a few ounces more of each food item, but a dramatic difference in in price. Your guests will never know! My last little tip about catering - cut out those water bottles! Instead of having individual water bottles for everyone, provide pitchers and glasses instead. Not only will it save you a costly penny, but your also helping out our planet.
Last, but not least, ENTERTAINMENT/AUDIO VISUAL/DECOR. Phew, almost there! Looking for some affordable entertainment? Turn to your local university! Not only can you possibly find local music or theater students willing to do the job, but you’re incorporating your local community into your event. 

Along the same lines, see if you can bring your own Audio Visual equipment to your venue. For example, power strips and extension cords are usually what we have lying around our house (especially under our computer desk!), but can cost us big bucks if you end up renting them.

Not every table at your event needs to look exactly the same, so let that stress go. :) Use some of your high-cost “wow” elements as accents to compliment other, less costly features. One of my favorite centerpieces for a table is to add an element of seasonal fruit (or even frozen fruit!) inside the centerpiece and less costly flowers at the top. SEE??

Well, I hope this post was helpful with planning your next event! Thanks Maya for the wonderful opportunity to post on your blog. I really appreciate it!!! Bye everyone!!

Friday, August 19, 2011

The "Golden Rule" Of Health

Right now I'm avoiding my apartment while my fiance is having a rendezvous with pneumonia. Poor John - his immune system is almost as lame as mine. He thoughtfully insisted that I stay away until he has a few days of antibiotics under his belt. For the first time in history, I listened.

I've never been too diligent about distancing myself when he's sick, but more than ever, I understand the value of health. Now that Orencia is doing its thing, the last thing I'd want is to rock that boat. Since Orencia is an immunosuppressant, I need to be  extremely careful about avoiding germs at all costs. If a simple cold reaches my chest, it can be very difficult to treat, and potentially dangerous. It can also easily cause a full-body flare. I'm also not allowed to receive my infusions when I'm sick. Postponing an infusion means postponing my relief, and that's never ideal.

In short, I've finally made myself a priority and must protect my health at all costs. The same is true for anyone living with chronic illness. When you spend each day fighting an uphill battle, a cold is nothing to sneeze at (pun fully intended). What could be an unpleasant annoyance for someone with a stronger immune system, could de-rail our progress altogether. 

This next part is a simple, but vital message for the world...

If you're a healthy person overall, you probably don't give much thought to a cold.  It's unpleasant, but it's a temporary stumbling block. You'll get back on your feet soon, as long as you drink enough water, get plenty of sleep, and perhaps take some medicine. For other people - myself included - it's definitely not that simple.

You can help chronically ill individuals tremendously, simply by following the age-old "sick rules": covering your mouth, washing your hands, and keeping your distance whenever possible. You never know what someone might be battling,  and for people who have compromised immune systems. catching your illness could have life-lasting and dangerous consequences. Value the health of loved ones (and even strangers) as you might value your own. If you're feeling sick, but you have plans with honest about how you're feeling beforehand. Kindly give them the option of backing out and be understanding about their position. Remember that health is one of the greatest gifts you can give.


Tuesday, August 16, 2011

Post Traumatic Stress Disorder & Suicide In The Military: A Very Personal Story

"For every suicide, there are an estimate of six survivors (according to suicidologists, this may be a conservative number)."

Today's moving post was written by one of those survivors - my friend Betsy. August 12th, 2011 marked the one year anniversary of her brother-in-law's passing. 

Many of us have heard of Post Traumatic Stress Disorder. We've seen the news stories and know the statistics. We're aware of the remarkable sacrifices that our troops make every day. Perhaps we even try to imagine ourselves in their shoes during and after war. However, few of us (myself included) have had these realities thrust into our backyards, devastating our own families. 

This post allows us crucial insight into a tremendous epidemic in our country. Betsy eloquently puts a face to the statistics, as she describes the emotional impact of a potentially preventable suicide. Betsy, thank you for your profound passion and courage to speak about a "taboo" issue; for allowing us an intimate view into your life and the lives of your loved ones. You've done us all a profound service, but most of all you've ensured that your brother-in-law's death will never be in vain. 

Betsy would also like to give special thanks to 3 special women: Libby Johnson, Rachel Oberg-Hauser, and Michelle Schreiner. Each of them contributed to a group suicide prevention intervention paper that Betsy worked on for graduate school. According to Betsy, these women were "beyond supportive of [her] raw emotions and grief while working on this project throughout the semester."

Most do not like to talk about suicide.  There seems to be something so otherworldly and frightening about it.  Suicide carries with it a unique stigma in society.  The mysterious nature of what drives someone to die by their own hand makes us fear what we do not understand. The deliberate act of ending one's own life seems to carry with it an element of choice, even despite our recognition that there must have been incomprehensible torment involved.  It is clear that most do not possess an accurate perception of the factors that lead to suicide, the number one being untreated mental illnesses such as major depression, bipolar depression, or post-traumatic stress disorder (PTSD).

Did you know that Army Reservists suffering from untreated mental illness who do not actively seek psychological intervention represent a particularly sensitive portion of the military at risk for attempting or dying by suicide? I had little knowledge of this group or of all those individuals in our military suffering the psychological consequences of war. And then I discovered the man my sister loved suffered from PTSD and most likely an untreated mental illness. Last summer, after 18 years of service to our country, he took his own life.

A year has passed since his death, and not a single day goes by without his death impacting my daily life and decisions. He was not my son or brother or my lover, but my guilt and grief still run deep. During the last months of his life, I tried unsuccessfully to get help for him and alert those surrounding him to the tragedy that could result if he remained untreated. After feeling unheard by the military and those in his immediate circle (people able to actively intervene), I was driven by desperation and called the police. Two days later, they entered his home with force and he shot himself. 
To this day, some people blame me for his death, and I still have a hard time accepting that some people cannot be saved. I worry about my mental health sinking that low and wonder if anyone would try to help me. I watch friends I love who suffer from mental illness and wonder if there is anything I can do to save them. When I receive a call from a troubled friend, my mind automatically goes to the worst case scenario. Just last week I jumped in my car and drove an hour to a friend who expressed suicidal ideation on the phone. For now that friend is safe, but what about the next time? What can I do? What can we do for our loved ones living with mental illness? I recently ran across this quote and keep it close to my heart. It guides me whenever I must decide how to help those I love...
‎"You cannot save people. You can only love them." Ana├»s Nin

We cannot save them, but there are things we can do to help. We can talk. We can end the silence. 
Although it is difficult for me to define our country’s approach to conflict as socially just, this much is clear: America has been constantly at war for at least the last ten years. This not only affects the ones fighting these battles, but it impacts all of the people in their lives.

Suicide is an unsettling phenomenon that eludes an easy explanation. It is a major public health crisis, with nearly a million people committing suicide each year worldwide. The inability of others to conceptualize the mind set of suicidal individuals makes the issue perplexing and ridden with stigma.  Suicide rates vary among ages, genders, occupations, and cultures. For Americans, suicide is the eleventh leading cause of death with more than 34,000 deaths a year (Center for Disease Control and Prevention [CDC], 2010). 

Since September 11th, 2001, an estimated 2 million individuals have been deployed to serve in the Operation Iraqi Freedom or OIF, and Operation Enduring Freedom OEF to fight the war on terrorism. Effects of war are significant when the current rates of suicide in the Army alone surpassed the overall suicide rate of US civilians. According to the ARMY Health Promotion Risk Reduction Suicide Prevention Report of 2010, there were 1713 attempted suicides, and 239 deaths due to suicide among soldiers just in 2009 in the Army. These statistics are what the Army reports, but may be underestimated due to a lack of information on soldiers that have returned home from deployment and soldiers who are no longer in service.

Although difficult and not without its challenges, we must bring about change in this imperfect world of preemptive war.  We owe it to our soldiers to ensure that they're as whole as possible. Americans must learn to truly care about members of the military. These individuals are serving our country and, as such, should be viewed as part of our family since family members fight for each other. Thus, we are socially obligated to provide them with the best medical and mental health care. Until world peace exists - an unlikely scenario given the current conditions of conflict in numerous war zones - we need to work within our culture of war to at least understand the adversity our troops face. I believe we must treat the alarming rise in the rate of suicide among the reservists as an emergency and stop this avoidable casualty of war. 

For every suicide, there are an estimate of six survivors (according to suicidologists, this may be a conservative number). A suicide survivor is a family member or friend of a loved one who has committed suicide. They may experience a myriad of emotions related to grief: shock, denial, guilt, anger, despair, disbelief, stress, sadness, rejection, loneliness, confusion, self-blame, helplessness, pain and depression; all of which are natural elements of the grieving process. After suicide, survivors often struggle with feelings of guilt and understanding why the death occurred. Many carry the burden of guilt with them and wonder in what ways they could have prevented it. This can be very detrimental to one’s health, and working through these types of emotions takes time. Due to the stigma surrounding suicide, survivors may also experience shame and embarrassment while coping with the death.

Change needs to start at the very top. And change is possible! Similarly to his predecessors, President Obama wrote letters of condolence to the families of fallen soldiers, except to those who die by suicide. They do not consider these lost lives as a casualty of war, but they are. Additionally, the Purple Heart is also not issued to those suffering from PTSD. As Michael Blumenfield writes, “This is outrageous! These men and women have all volunteered and knew they could be in harm's way. There is no basis for treating them as if they purposefully became psychological casualties. There is no way to minimize the grief of their loved ones but this failure to acknowledge their loss only compounds it (Blumenfield 2010).” In order to demonstrate that he is truly acting as the Commander-in-Chief, our president must passionately advocate for changing the existing policies of discrimination within the military - policies that perpetuate the stigma of mental illness and suicide. This summer the policy on writing letters of condolence for our soldiers who die by suicide changed in part to many grassroots efforts. This may seem small, but it is a victory nonetheless! With further efforts, we can continue to lessen the existing stigma!

Suicide is indeed a serious public health problem that demands our attention, but its prevention and control are unfortunately quite complex. Passively noticing this issue will simply be insufficient to cause major change. Whether we advocate for social change or directly influence policies., we must actively acknowledge that we each have the power to prevent suicide.

What will you do today to spread the word? 
What can you do to take notice of this issue?
How will you love those with mental illness?
We must go to war for those who go to war.  

Rest in Peace.

Sunday, August 14, 2011

Spotlight On A Special Artist & A Brand New Giveaway (Win A Gorgeous Clutch Purse)!!!

I'm so excited to introduce today's giveaway - not only because I know you'll love what's being offered
, but because of the special artist who created it. As I was perusing
(undoubtedly one of my favorite past time), I came across an amazing store called Mermaid's DreamTake a moment and check out these beautiful handmade clutch purses! I reached out to the artist (Sherry), explaining what Loving with Chronic Illness was all about. I asked if she might be interested in offering one of her purses as a giveaway and, as it turns out, she has a very personal connection to the idea of living and loving with chronic illness. Sherry was diagnosed 15 years ago with Osteoarthritis. Before I explain more about this giveaway, please take a few moments and meet Sherry...

What is your diagnosis? When were you first diagnosed and how old were you?

I was diagnosed with osteoarthritis 15 years years ago at age 41. I started to suffer severe pain in my knee, which led to surgery on my knee. The cartilage was diseased from arthritis and most of it was removed. I was then diagnosed with osteoarthritis.

What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?

The best advice I could offer someone is to keep busy.......keep moving. I try to get out for a walk every day. I love the feel of the sunshine on my face. The combination of exercise and sunshine helps keep my serotonin levels up, which is a very important part of maintaining a sense of well being. A positive attitude is key, and of course so is maintaining your sense of humor.  My sense of humor has taken me a long way through this journey.

Please explain a bit how your condition affects you. 

The biggest adjustment is not being able to do things like I used to. Running, gardening and being able to go, go, go all day are things of the past. The steady pain in my joints makes it difficult for me to do things I once took for granted.  I've learned that, if I need to lift or move something heavy, I have to ask for help. If I try to do it myself, I'm sure to pay a steep price. Learning to ask for help has been difficult,  since I've always thought if I need something done, I'll do it myself! I've come to accept the fact that sometimes I need help, and I've learned to ask for it (but I still don't like to). Over the years the pain has grown worse and the arthritis is not only in my knees, but also in my feet, hips, back and hands. Some days are not too bad, other days...well, let's just say I cope.  

Where do you get your strength?

I draw a lot of strength from my inner self. Keeping my situation in perspective is a big help. While I suffer chronic pain, I keep in mind that many people cope with chronic conditions much worse than mine. I can still get around, work and live a full live...many people can't.

What are you most proud of?
I'm most proud of my resilience, not only in terms of the chronic pain, but I've also had to deal with mental pain that various difficulties in life have caused me. Prayer, sunshine and laughter all help me tremendously

What are three things you couldn't live without? 

A few months ago my dog would have topped my can't live without list. She has since  passed  and I'm still here. There are times when the pain of losing her far surpasses my arthritic pain. So the three things I couldn't live without would be my children,my husband and my sense of humor.

If you could send one message to medical professionals around the world, what would it be?

The one thing I'd say to medical professionals is listen! Have some patience and truly listen to what people are saying to you. Chronic pain is a very difficult thing to live with and sometimes it's very difficult to explain. There are situations that may not be "textbook", but believe me - when someone tells you they're in pain, they mean it. beautiful are these purses?

You lucky ducks! Sherry has generously offered the winner of today's giveaway a beautiful clutch purse of their choice!!! You can enter this giveaway a total of 2 times!

For entry #1: Make sure you "like" Mermaid's Dream on Facebook, and then leave a comment on this post letting me know!

For entry #2: Head on over to Sherry's Etsy shop, take a look around, and leave a comment on this post telling me which purse you'd choose if you were to win. Would you give it to someone as a gift or treat yourself? Where would you go with it?

You may enter this giveaway until 11:59pm on August 28th (2 weeks from today). A winner will be chosen at random and announced on this blog the following day. As always, thanks for reading, feel well, and GOOD LUCK!