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.

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.

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 Pinterest.com. 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!!

The "Golden Rule" Of Health

Right now I'm avoiding my apartment while my fiance John is fighting pneumonia. 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 my medication is finally doing its thing, the last thing I'd want is to rock the 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 quite 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, which is never ideal

In short, I've finally made myself a priority and wish to 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 an overall healthy person, 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 long-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 someone...be 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.

Love,

Maya

Spotlight On Those Who Love Us: My Big Brother Josh

I've written before about my big brother Josh - remember this February post? After seeing me struggle this past year, he made the grand gesture of  tattooing the words "Stand Tall" on his forearm. "Stand Tall" is the slogan of the Spondylitis Association of America  and two words that are central to my life. Despite the pain and struggle of living with chronic illness, I must hold my head high, stay strong, and keep standing. Nothing could mean more than knowing that my brother is there for me; that he's in this with me. Whenever we're together, I see these words on his arm and it's a constant reminder that I'll never be standing alone.

As the years go by, our relationship has only grown stronger; he has morphed from my big brother into my best friend. After enduring my worst year yet, I'm more sure of that than ever. No matter how bad things got - no matter how intense the pain or deep the depression - Josh was there. 

Now allow me to present this special spotlight...

Who in your life is living or has lived with chronic illness? Please say a bit about the illness and when were they diagnosed? 

My sister, Maya Klauber  (you may have heard of her, shes kind of a big deal). Maya was diagnosed when she was 15 with  a severe form of arthritis called Spondyloarthropathy.

What is/was your relationship like?

The slash in your question is appropriate, because Maya and I have essentially had two entirely different relationships growing up.  Up around the time I graduated high school, we had the typical contentious sibling rivalry that I look back on with tremendous regret.  She was the “annoying little sister” with whom I was too cool to develop any kind of meaningful relationship.  Thankfully - mainly due to the fact that I matured from being a typical self-absorbed, self-conscious teenager - our relationship has done a complete 180 since I went away to college. I now see Maya for how she always has deserved to be seen; a truly special and caring person who I'm proud to consider my best friend. Our friendship seems to be getting stronger by the day.

Did your relationship change in any way following their diagnosis? Was your relationship affected by illness? If so, how?

Growing up, Maya always had many lingering and unexplained pains.  I'm ashamed to say I did not think much of it, as I was wrapped up in my own “problems” and Maya VERY rarely complained. Unfortunately, I'm not alone in this - she got virtually no sympathy or understanding from her teachers, friends, or even doctors. I was content to accept the doctor’s guess that a previous bout with Lyme Disease was the culprit. As an immature kid, it never even dawned on me that Maya’s inability to run far or excel at sports was to be attributed to anything more than her being non athletic or weak.  

By the time I understood the extent of her condition, we were well on our way to developing what is now a fantastic friendship.  I'm very grateful for this, as I'm now able to take an active role in her life. I can be by her side for everything she had to endure since her disease  has become unmanageable without pain medication.  Having seen how she suffered for years before finally finding a doctor who could offer a proper diagnosis, how she dealt with the frustration of daily pain and varying effectiveness of her medication, how she handled the countless side effects and illnesses that she gets from her medication, and most impressively how she has USED her condition to help others, amazes me. It's certainly fair to say that her illness has brought us closer together and has opened my eyes to how special she truly is. 

What is/was the most difficult part of coping with your loved one's illness?

Other than the obvious answer of feeling helpless as I watch Maya in pain, what I find hardest is my inability to PROPERLY empathize with what she is dealing with.  I can read all about Spondylitis, I can have her describe what she is feeling, but there is just no way that someone who does not face daily, intense chronic pain can properly appreciate what it's like to be in their shoes.  It's impossible not to feel guilty that I am healthy and she is not, knowing that I could have easily gotten the same gene that predisposed her to this disease. Obviously it's illogical, and it's a feeling that Maya would no doubt object to, but I think it's impossible for any healthy sibling to not have this underlying sense of guilt on a fairly consistent basis. 

What advice would you give to someone who also cares for an individual living with illness and/or disability? What helps you?

I think it is very important not to dwell on the fact that the person has an illness or disability.  Just be supportive and be there to listen if they want to talk.  Constantly asking how that person is feeling, while well-intentioned, can very easily make them feel uncomfortable and could serve as a constant reminder that they are “different.”  You will never truly understand what that other person is going through , and they don't expect you to.  Along those same lines, I think it's very important to keep humor and laughter as a major part of any relationship. Its even more important for someone who faces chronic illness or pain.

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

Just because you don't know what's wrong with a patient does not mean that it's in their head, or that it's not serious. This is especially true for auto-immune diseases.  Be thorough in asking about symptoms, and keep an open mind!

Infusions, Updates, And Focusing on Fibromyalgia

Last Wednesday I had my monthly Orencia infusion and a rheumatology appointment with Dr. Berman. It had been 5 weeks since my last Orencia treatment, and my body was definitely telling me it needed more. Although I've been getting these infusions since last fall, I'm still struck by the strangeness of it all. While I'm hooked up to that IV for hours, I sometimes feel like I'm in some kind video game...namely F-Zero, the 1990 Nintendo Game. It's as if I'm running low on energy units and I'm finally able to recharge my battery (nerd alert!). However I might view it, I'm just thankful for this relief.

Although my pain is much better than last year, it's still there every day. I often say the achiness is like the pain one might feel after running a marathon or catching the flu. The burning "Spondylitis pain" in my ribs, neck, and spine has thankfully settled down and, while the pain is now less intense, it's more widespread. Body parts that never gave me much trouble - my face, arms, hands, shoulders, knees, shins, ankles, feet - are in a constant state of discomfort. The majority of my body hurts to the touch and I'm incredibly stiff, especially after sitting for more than 5 minutes. My fatigue has been pretty overwhelming lately and my mind is just "fuzzy." I'm frequently at a loss for words and, for a writer, that's no small problem.

While my mental state has always impacted my health, it's more apparent than ever. Even the smallest stressors can send me into a flare. For instance, a disagreement with a loved one immediately causes the joints in and around my jaw to lock. My head starts throbbing, and I can feel the pain, stiffness and inflammation spreading throughout my body. It doesn't take long before it feels as if I've been hit by a car! Life is bound to throw many curve balls my way, and I want to feel strong enough to handle them. This level of unpredictability has become anxiety-provoking, and something has to change.

Until recently, I was content with how things were moving along. I'd come to expect a certain level of pain and, as long as I wasn't bedridden, I felt I had little to complain about. But should I settle for this?With my third year of graduate school quickly approaching, an intense internship at a children's hospital, and a wedding in my future, I want more. I want to truly understand my body and predict its reactions to things. Ideally I want to increase my energy level, lessen the discomfort I feel each day, and become more active. These are things I need and deserve. I approached Wednesday's appointment in this mindset and, as a result, I now have more clarity and hope about my health.

When considering my symptoms, Dr. Berman and several doctors before her have speculated about Fibromyalgia. However, because my Spondylitis was rarely well controlled, they dismissed this second diagnosis and focused entirely on controlling my arthritis. Their main goal was to reduce the inflammation in my joints and connective tissues, slow the progression of the disease, and target the main areas of discomfort: my neck, spine, hips, and ribs. As Dr. Berman examined me last week, it was clear to both of us that my Spondylitis was finally under control! Three months prior, she was barely able to touch my spine without having me whince with intense pain. But last week she was actually pushing on each vertabra and I was okay. It thrilled me to know that Orencia is, in fact, doing it's thing.

But still, the obvious question still remains: what about this pain I'm in? My discomfort may be more tolerable, but it's constant. Although Dr. Berman reminds me (a bit too often) that I have a chronic illness and wont ever feel "perfect", I'm not willing to just accept that fact. I'm still in significant pain and, if my Spondylitis is controlled, shouldn't we be focusing on Fibromyalgia? I asked Dr. Berman for help understanding the nature of Fibromylagia - a disease that no medical professional has ever taken the time to explain. I told her that, at this point, it's very difficult for me to identify what is "Spondylitis pain" and what is "Fibro pain." I'm glad I pursued this line of thinking because, as she examined me, she found that I had 15 of 18  Fibromyalgia "tender points". As she touched each one, I nearly jumped off of the table!  For once, the diagnosis of Fibromyalgia was clear and definite. Essentially, after enduring such a long, uninterrupted period of pain, my nervous system is in "over- drive." It's not fun, but it makes sense. My pain tolerance is lower than ever before and every sensation - a hot bowl, a blood test, my Bernese Mountain Dog stepping on my toe- is shockingly painful.


















To sum things up...

The not-so-good news: My Fibromyalgia diagnosis is definitive and the disorder is active.
The good news: Thanks to a combination of Orencia, pain medication, and a gluten-free diet, my Spondylitis is officially controlled. I can't remember the last time I was able to say that! Since I've only ever treated this condition, I have no idea how Fibromyalgia medication could change things for me. It stands to reason that if my Fibromyalgia developed from uncontrolled pain, perhaps it could dissipate (even disappear?) if my pain relief is maintained. The next step is to meet with a psychiatrist who will switch me from Zoloft to Savella - a medication that double as an anti-depressant and a Fibromyalgia treatment. I'm feeling quite hopeful about this step, and who knows - the difference in my quality of life could be tremendous!

As always, thanks for reading along, my fabulous readers. Your support, thoughtful comments, and willingness to share your stories with me enrich my life more than you know.

Love,

Maya