Happy Birthday John!

To my birthday boy,

Happy 26th!!! 3 years and 3 birthdays later...and I'm kinda crazier about you than ever. I'm grateful that I can start and end each day with your voice and, above all, that I can call you my best bud. I can't wait to see where life takes us....together. Thanks for being you. Get ready to celebrate tonight!

love always,

your biggest fan

Walking For Arthritis & For Myself

Maybe it's that age 25 is approaching rapidly (February 12th, to be exact) or maybe it's because I'm reflecting back on the pain of last year, but lately I've been quite into the idea of my "Bucket List." You know... the list of things you want to do before you kick the bucket. Before last year, "Run or walk a half marathon to raise money for arthritis" was right near the top, but Spondylitis had different plans. As many of you know, the pain of last year prevented me from doing many things, like walking without holding on to walls or my loved ones. I prayed for these simple abilities back like I'd never prayed for anything.

Now that I'm getting back on my feet, I've decided to participate in a 5K Arthritis Walk to raise money for the Arthritis Foundation. Founded in 1948, the Arthritis Foundation is the only nation not-for-profit that supports the more than 100 types of arthritis and related conditions. The walk will take place on Sunday, May 15th. While many people may not think twice about walking a 5K (3.1) miles, this will be a profound undertaking for me. After enduring the pain of last year, I'm trying to celebrate what my body CAN do (and for a great cause). I figure 3.1 miles is enough to push myself, but not to do damage to my body.

But I'm not doing it alone! I'll be joined by my brother Josh, my sister-in-law Erica, my boyfriend John, several of my best friends, and my team - the "NYC Sick Chick Club." I couldn't write this post without sharing a little exchange John and I had online the other day (pretty sure I have the best guy around)...

Me:  Thank you for signing up for the walk! 
John:  I'm very happy I have a way to show my support
Me: It means so much that you'll be by my side... 
I just hope I can make it!
John: you will! I will carry you if i have to!

I know money is tighter for most of us lately, so I find it difficult asking for donations. PLEASE don't feel obligated to donate - even passing this post on to your own friends and family would be fantastic! However, if you can spare some money (even a dollar), it will help fund arthritis research, education, and community programs. To read more about the Arthritis Foundation, please click here. Personally, I know that before I decide to donate to an organization, I like to check it out of Charity Navigator. Therefore, I think it's only fair to provide you with the Arthritis Foundation's evaluation. If you aren't happy with this evaluation (2 out of 4 stars), please consider directing your donation to the Spondylitis Association of America (SAA) instead. SAA is the organization that raises money for my specific disease. Here is Charity Navigator's evaluation of SAA (4 out of 4 stars). 

If you've decided on donating to the Arthritis Foundation, please click here to reach my personal fundraising page for the Arthritis Walk. Please know that I'm extremely grateful for ANY support you can show (even just an encouraging post!). THANK YOU ALL SO MUCH!

Love,

Maya

Note To Self: Dream At All Costs

I've always been told I could do anything, as long as I worked hard and believed in my goals (thank you, mom and dad). Because of this, I've always had a head full of dreams and, when I began my masters in social work, it was no exception. I was proud of being accepted into Columbia, moving into Manhattan on my own, and learning to navigate the city. I'd identified my calling and would be putting my experiences to use by helping kids and families also coping with illness. It all seemed so clear. But when Humira stopped working last year, my foundation was rocked. Pain and illness didn't ask permission, nor did it care what my plans were. Never before had I felt so uncertain, scared, or dependent on other people. Being in that position changed me.

Just like many people living with chronic illness, I feel frustrated that I'll need to be connected to the medical community for the foreseeable future.  I'm much more careful with myself now at age 24; something that's hard to swallow when my friends' bodies are at their peaks. Now that my pain is under control, I do feel stronger. I'm grateful for each moment I'm not suffering and I'm gradually growing more hopeful every day. Deep down, though, I'm terrified that if my new medication fails or my disease takes a turn, I'll be right back to square one. So, while I've always been a dreamer, right now it's hard to entirely believe in those dreams. I fear the disappointment if my body doesn't keep up. As a future social worker, I'm nervous to have clients who depend on me, only to let them down when illness knocks me out. 

What I've realized, though, is that - fear or no fear - I have to keep dreaming and believing that, even if social work isn't possible, something else will be. This is a central part of my New Year's resolution. I have to remember how passionate I've always felt about committing my life to service; that my life really does have a distinct purpose. If I lose sight of these things, illness will have robbed me of my heart. In former posts, I've said I'd give anything to get back to where I was before last year, but today I'm taking that back. I can't erase the painful memories, nor can I reclaim the lost days. But I can move on. I can stand up to fear and capitalize on the second chance I've been given. I don't wish to go back to "where I was before" because it brought me to who I am - a person I'm proud to be.

If someone told me two years ago about the duration and severity of the pain I'd experience, I wouldn't have believed I'd still be standing. But I am standing and, more than that, my dreams are returning. If you're living with illness, you need to remember something: you, my friend, are a force to be reckoned with. While it's hard to remember when we're at our worst, we can and will make it through. Furthermore, we'll have new wisdom and strength at the other end that will inspire others. So don't you ever give up...and neither will I. Never believe you're alone in this fight and hold on to yourself and to your dreams. This world will be better for it.

Love,

Maya

Quick & Important Survey for Spondylitis Patients

Do you live with Spondylitis? 

The Spondylitis Association of America (SAA) is asking that you take a few moments to fill out a crucial survey. The information collected will be used by SAA and medical professionals as they work toward understanding this complex disease and developing a cure. It takes 10 minutes tops.

Please click here to complete the online survey.

...you'll be helping yourself and millions others like you.

 Not Sure If You Have Spondylitis?

Spondylitis affects more than 2.4 million people - that's more than the combined population of San Francisco, Detroit, and Boston!  In case you missed my July post about SAA's Awareness Campaign - an initiative aimed at reaching thousands of undiagnosed sufferers - you can check it out by clicking here. Take the free questionnaire developed by physicians to help uncover undiagnosed cases of Spondylitis. Go ahead... get yourself some answers!

How You Can Support SAA

Aside from the hard work they do raising awareness for Spondylitis and money for research, SAA is run by genuinely wonderful human beings. They care about each Spondylitis patient and, throughout the years, they have come to mean a great deal to my family. Check out my May post, Spondylitis Awareness & How To Help, if you wish to support SAA. There are many ways to help and not all of them involve money...

Thanks for reading!

Love,

Maya

Don't Lay Down - Catie Curtis

I became a fan of the singer/song writer  Catie Curtis  about 15 years ago, at the start of her career. She's still going strong and, after producing 9 critically-aclaimed recordings, more and more people are discovering her talent. Growing up, I remember my mom and I listening to Catie during most of our car rides. I remember looking forward to that time - even  rides that ended up at doctor's offices  - simply because I'd get to hear this music. On her album My Shirt Looks Good On You (released in 2001), you'll find this fantastic song on track #8...

Don't Lay Down

catie curtis  2000

Don't lay down if you're gonna fall asleep

Don't lay down if you're gonna lose me
I'm with you pulling for a miracle

I'm with you pulling for a cure
I know that isn't what they're giving you
But I'm with you taking some more so
Don't Lay Down

Don't give up gently
Don't give in to what they say will be
I'm not ready to lose you
I'm not ready to see
Your light shining on the ocean
Your love swimming in the sea so
Don't Lay Down

Let's go down and watch another night fall
Someday darkness is gonna find us all
But don't lay down
Don't lay down
Don't lay down 

You can listen to a sample of "Don't Lay Down" here on Amazon.com and buy it for only $0.99! Trust me, it's worth it.  When I listen to these words now - after experiencing the pain of last year - they take on a whole new meaning (often bringing tears). To those who have stuck by me in sickness and in health...to those who wouldn't let me "lay down" during my own fight... thank you. You can't know what a gift you are to me.

                                                                                                      

Love,

Maya

Happy Birthday To My Amazing Mama!

Happy Birthday to you

        
           Happy Birthday to you
                 
               Happy Birthday, 
dear mom,
                   
 Happy Birthday to youuuuuu!




Dear Mom,

Happy Birthday to my best friend! In nearly 25 years, I haven't quite figured out how to explain what you mean to me. You are everything...the one that's been there through thick and thin... the person who always understands. Where would I be without your strength and love (especially after this past year)? No matter how scary things may get, I know you're right there behind me and it's means the world.

I also hope you know how proud you make me.  The people and animals you care for are all better for knowing you. You're so talented and yet so humble. I deeply admire how hard you work every day and the success of Someday Designs. Quite simply, I'm proud of everything you are and so lucky to call you my mom.

Let's celebrate today!

Love always,
My

Spotlight on Cathy Wescott Kramer: A Beautiful & Strong Spirit

Loving With Chronic Illness has brought so much good into my life. Among other things, I've gained greater insight into my own experiences and have the pleasure of connecting with individuals that bring me great strength. For instance, I feel honored to have met Cathy. She has lived with Rheumatoid Arthritis since 2004 and writes about her journey on her blog, The Life and Adventures of Catepoo. I found her site just as I was beginning my own blogging endeavor and this was the first entry I ever read:

May 24, 2010 

Like A Storm

One great thing about rheumatoid arthritis is just when you think you have hit your worst possible flare and wonder how you will ever survive it, RA, like a storm, moves on and gives you a break. It is during this time that everything about living life feels new and exciting!

Short, sweet, and incredibly poignant. Aside from appealing to the poet in me, I  remember this sentiment reaching me just as I was starting to feel the effects of my failing medication. I was deeply comforted by these two simple sentences. Now, nearly 8 months later, I consider Cathy a friend and still look to her words for hope. Aside from being an RA patient, she is a devoted wife, mother of two, dog-owner, teacher, and so much more. Although she has known tremendous pain over the years, she fights to keep her incredible spirit alive. She always pushes herself to consider and identify what she's thankful for (in this post, for example, she makes a list). Cathy makes me want to fight harder; her messages and support this fall gave me strength in my darkest days. 

You need only read one post about her family to understand the love she holds for them. Cathy has a 14 year-old son named Alexander and a 12 year-old daughter named Sophia - two kids any parents would be proud to have raised. They are deeply empathetic people and have a strong desire to make her life happier and easier.  She has been married to Steve, her husband and best friend, for 22 years and they are clearly a fantastic pair. As Cathy experiences the healthiest and most pain-free period she's had in many years, it's fun and exciting to read about the new experiences her family is able to have! They make me hopeful and excited to start a family like this one day; a family that values each other over anything.

I've also been inspired by Cathy's desire to remain natural and good to her body. When doctors were pushing intense medications on her, she had the courage and wherewithal  to drastically change her diet and pursue more natural ways of healing. In her post Changing, Growing, and Always Learning , she writes "I love how life and its lessons keep building on each other allowing us to learn just what we need at the time, and then learning a bit more, until we finally find a place that feels right with who we are." She goes on to explain more about the various dietary changes she has implemented over the years - why she made them, how each one affected her, and more about her overall philosophy. Although Cathy's desire for improved health primarily facilitated these changes, she is also conscientious about her environmental footprint, the overall health and well being of her family, and the sustainability of her food choices. With a painful autoimmune disease to battle, a family to care for, and a job to do, Cathy's energy amazes me. It is precisely this passion, faith, and determination that makes her one of my role models. 

What is the year you were first diagnosed? 

I was diagnosed in 2004.

How old were you ? 

I was 36.

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

Search everywhere for answers.  There is not one answer to your condition.  We each have unique paths that we need to take and by reading and talking with others, we find the path that is individually right for us.    

Please explain a bit about how your condition affects you.

I have what the doctors consider to be “severe rheumatoid arthritis”.  My symptoms began in my fingers, then my feet and eventually to all my joints.  On bad days, rolling over in bed is a chore and pulling the blankets up over me is almost impossible.  Picking up my cup of tea can be a challenge.  On good days, I can ride my bike, take long walks, complete all household chores, and hug my kids and husband without pain. 

The hardest thing for me to cope with is the severity of this disease.  I have always been fairly active, especially with my kids and husband.  Although I have found other ways to spend time with them, it has never felt like “me”.  I feel complete when I am active.  (I feel kind of weird saying “active” because I am also a person that demands a lot of down time.”)    Also, the ups and downs of this disease can be overwhelming.  I may have several weeks of feeling wonderful and then wake up and need help out of bed or getting dressed.  I keep reminding myself on good days that the bad may return soon, but I am never really prepared for it.  It always makes me cry. 

Despite my best efforts, this disease has become more severe with time.  I have tried many things:  medication only, integrative health (meds with diet/herbs/homeopathy), alternative only, and now back to integrative.  I 100% wish I could do this without meds, but have come to the conclusion that what works best for me is a combination of medications and a diet that is based mostly on free range meat, lots of veggies, fruits and supplements. I am still holding onto the belief that our bodies do want to heal and someday I will find what my body needs.  But, for the last six months, integration seems to be doing the trick so I will stick with it.  Feeling good is something we take for granted until it is gone.  I now know how precious it is.

What are 3 things you couldn't live without?  

1.  Alternative options.  

2.  My family.  

3.  My positive outlook on life. 

What are you most proud of?    

In the last almost seven years, rheumatoid arthritis has forced me to find my strength.  I have realized that I am a really great person that deserves to seek out the best medical care available and choose from options that feel right for me.  Also, I have learned to stand up for myself and let health practitioners and even friends know when I feel decisions they try to make for me don’t feel right for me.   I have learned to listen to my heart and it never leads me in the wrong direction. 

Where do you get your strength? 

My strength comes from many places.  First, I have an amazing family that has strength beyond anything I could have imagined.  Not only do they support each of my decisions, they make sure they happen.  Their strength guides me every day.  Second, although I am not a religious person, I am very spiritual and feel this spirituality gives me strength and guidance.  I feel like I have become a better person having lived with rheumatoid arthritis.  For that, I am thankful to this disease.   Third, through blogging I have developed a support system that is out of this world.  I never imagined how much I needed to talk with others who experience the same feelings and pain I do.  The friendships I have developed online are amazing and I know I can always count on one of my friends to get me through a tough spot or cheer me on during my good days.

If you could send one message to medical professionals around the world, what would it be?  Listen to your patients.  Let them know that they are unique and treat them this way.  For many of us, having a disease and exposing our vulnerability can be humiliating and scary.  Not only are we in pain physically, but emotionally too and exposing that to strangers (medical professionals) is hard.  When I first saw my naturopath in November of 2004, I remember crying when she acknowledged how difficult this must be emotionally too.  This was the first time all year that anyone acknowledged this fact and it made me feel okay.  I still feel drawn to her because she continuously acknowledges what I am feeling inside.  Our diseases often make us feel that we are making things up because one moment we feel okay and the next we don’t.  Listening to us and letting us know that you understand means the world to a patient.

Thanks so much Cathy and please keep feeling great...

Love,

Maya