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

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.

Love,

Maya

NYC Arthritis Walk Completed (And A Grand Total)!

Sunday was the long-awaited New York City Arthritis Walk! I first wrote about it in my January post: "Walking for Arthritis & For Myself." It was my first 5K (3.1 miles) - a distance that would have been truly impossible for me just a few months ago. With support from my incredible family and friends, I'm proud to report that I completed all of it! Although it was raining, we had a blast!

Our team, "The NYC Sick Chick Club", came in 2nd place for fundraising and also won the T-shirt design contest (thanks to the beautiful designer, Ali Yuhas). I'm sending a tremendous thank you to everyone who helped us raise money for the Arthritis Foundation. Your support means more than you know and this money will go toward fighting a disease that effects nearly 46 million Americans. And now I'm proud to announce the GRAND TOTAL...

 My personal total: $1, 515.0

              Team total: $7, 845.00

In the past year, I've been impacted every day by arthritis. I've placed my life in the hands of medical professionals and experienced an entirely new level of pain. I've felt scared and, at times, I've even been hopeless. I've tried more medications than I care to remember and coped with a wide range of side effects. I've had countless medical appointments and received IV infusions every few weeks. I've cried, I've prayed, and I've learned to ask for help. I was forced to extend my masters program by a year. But perhaps worst of all, I've been completely unable to plan my days and missed out on time with my friends and family.

But I've finally found a medication that has changed my life. I can once again breathe deeply and walk freely. I have control over my days and can plan for my future. For all of these reasons and more, this walk was exceptionally important to me. I walked for the simple reason that I could. Sunday felt like a new beginning; as if I was putting the last year behind me with each step. I was walking for myself, for my readers, and for every "arthritis warrior" out there.

On the morning of the walk, John and I woke up to pouring rain. I was anxious and disappointed because - as anyone living with arthritis can tell you - rain can be like kryptonite. I worried about how it may impact my ability to walk and felt guilty that people were travelling from far and wide in bad weather. Everyone insisted on coming anyway...rain or shine.

The walk started at 10am in Battery Park, a beautiful area at the southern tip of Manhattan. When John and I arrived, we found my friend Virginia who came all the way from Boston to walk with me...something I will never forget. Soon we spotted my friend Becky running toward us with a big smile and a camera in hand. I have her to thank for all of these awesome photos! Our team raised enough money to earn our own table at the walk (fancy huh?), so Jodi and the rest of my teammates were easy to find.  We then met up with my dad, my brother and my sister-in-law Erica. My mom and aunt were sad to have missed it, but Sunday was also the annual stationery show at the Javitz Center where they had to represent their amazing business, Someday Designs. Finally, my friend Jill and her boyfriend showed up to offer their support!

In the moments before the walk began, I basked in my surroundings and the people who were there for me; the same people who stuck by me during this painful year and throughout my entire life. I thought about all of my loved ones who wanted to be there, but couldn't. I felt my nerves settling and excitement taking over. I also had a profound sense of belonging. I was honored to walk among hundreds of incredible individuals, each one having been touched personally by arthritis. Whether they were patients, friends of patients, or family members, they all gave me strength. More than ever, I was proud to be fighting (and winning) this battle.

Love,

Maya

Spotlight On The Beautiful & Vibrant Ali Yuhas!

As I was designing Ali's spotlight, my biggest struggle was finding page dividers that were bright enough. Quite simply, Ali is a ray of sunshine and, although we've only hung out a few times, her presence just makes me feel good. I've loved sharing stories with her and, better yet, laughing about the inherent absurdity of chronic illness. She's just one of those people I "click" with - something I predicted when I first saw Ali on Jodi McKee's portrait project.

Ali works at SeamlessWeb.com, a well-known food ordering web site. As she puts it, "I studied computer science/IT stuff in college and after getting a BS in Digital Media and doing lots of photography/studio art work, decided that I was going to pursue my MFA in Design at BU to explore the more artsy side of things - which everyone can see here: http://www.ahasdesign.com." Ali's attitude is something that I love being around and, even though she has endured so much, she maintains a positive attitude about it all. I've learned to laugh about my struggles with her; to focus less on what I can't do, and more on what I can. For instance, Ali takes gorgeous photographs and has even started something called her "365 Project" with the goal of snapping a photo a day for one whole year. Click here to see several other collections. She sees the world in a beautiful way and I can't help but think this is somewhat impacted by her illness. She's been forced to slow down since her diagnosis and, while that can be frustrating at times, I also think she also notices more of her surroundings that others may miss. So now, allow me to introduce Miss Ali...

What is the year you were first diagnosed? How old were you ?

I was officially diagnosed with Ankylosing Spondylitis in 2003. However, this stemmed from endless misdiagnoses that started after a gymnastics injury the summer between 7th and 8th grade in 1998, and turns out relates to issues that were present since birth. I was 13 in 1998, and was just about to be 19 and head to college when I was actually diagnosed.

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

Autoimmune things in general are so finicky to diagnose, and AS is no exception, but I would first tell them to be really happy that they're on the road to treatment. Getting a concrete diagnosis was half of my battle, and although I did have to take time to be 'okay' with the reality of what was going on, the prospect of an actual diagnosis, with actual medications that had the potential to work, was incredibly exciting. To this point, try not to get discouraged if it takes a while to find a medication (or doctor, even) that works. It took a couple of years, a really bad allergic reaction, some crazy doctors, and lots of frustration for me to find something that worked.

As far as chronic illnesses in general go, I'm still dealing with what mine has to throw at me, so the best advice I can give would be to take it one day at a time. Enjoy the little things, listen to your body, don't take anything for granted, and don't ever (ever) give up. Even though I was considerably young when everything first started, I look back now and realize that I actually did know what I was talking about and telling doctors. Chronic illnesses are tough enough to deal with, and if you can find the strength, please remember to just trust yourself - go with your gut.

Please explain a bit how your condition affects you.

Oh goodness, this is a tough one. I hate to say things like this, but as I'm getting older, I'm realizing that AS might effect me more than I'd like to admit. Symptoms range from fatigue, stiffness, and joint pain, to strange muscle spasms, weird digestive issues, and a newly diagnosed case of psoriasis. The hardest to cope with is probably the pain and fatigue, as it's so much more than "just being tired". I'm not one for taking a breather, and I still grapple with the fact that I need to slow down; this is also probably the most apparent element that has changed with time. Coming to terms with the fact that I don't have to (and probably shouldn't) constantly push myself and that it really is okay to ask for help has been, and I think will continue to be, something that I have to work on.

On an emotional level, dealing with AS has been one huge roller coaster. There are the good days when you marvel at feeling well and then there are those days when you want to sleep for hours after just sleeping through the night or walking to work. The latter gets frustrating, but helps you appreciate the former so, so much.

Where do you get your strength?

These just keep getting harder and harder! :] But ok. Honestly, this is a tough one because I really am not quite sure. When I was first diagnosed, my parents weren't very understanding of the "invisibility" of the pain that was going on, and even now, don't quite "get" things; they chalked it up to me being an angsty teenager looking for attention. It's hard dealing with that, and there's nothing easy about it, but I've always kept a journal and have always played the piano - two things have been incredibly therapeutic and helped me be 'okay' with everything.

I'm also one of those people that got ridiculously lucky with the friends in my life. They know that understanding completely is something they're not able to do, but admit this, which makes their current understanding that much more genuine. They let me rest, understand if I need to take a breather, offer me the couch instead of the floor if I'm spending the night, and don't discount my fatigue as 'laziness'. Over the years, friends going back all the way to elementary school are still in my life, and I couldn't be luckier; they help me remember that my condition doesn't define me, and that I get to define *it*.

In addition, I've come to realize that sharing my story is a great thing, and the people you meet in doing this are even better. There are people who understand, who can make you feel less 'alone', and who can relate. I do think Plato's quote "Be kind, for everyone's fighting a tough battle" encompasses things pretty well - there are others who are experiencing things we can't even begin to imagine and everything can always be worse.

What are you most proud of?

I think I'm the most proud of the fact that I haven't let AS get in my way. When I was a junior in college, I studied abroad in Italy. Despite the fact that I could only bring so much medication with me, had to venture from Italian hospital to Italian hospital to "prove" that I really needed my meds, and had to pay, in full, before getting reimbursed by my American health insurance, it was possible.

The summer after I did this, I drove cross country with Enbrel and a cooler of ice in tow. Two summers later, right after college graduation, I entered grad school. My AS was in a huge period of remission during this time, and I worked 4 jobs to support myself while writing my thesis; between years of grad school, I backpacked through Eastern Europe for 3 weeks.

There were definitely ups and downs, but I also learned a great deal about myself, how to cope with the craziness of AS, and how to be confident in dealing with everything. ...I'd sign up to do everything, the same, all over again.

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

Explain things to your patients, learn their names, listen to them, and work with their other relevant doctors. Understand that we're more than your 3:30pm, second-Tuesday-of-the-month, right-after-your-3pm appointment. I've had doctors tell me everything from the fact that I simply need to be out in the sun more, to the fact that I needed to be put on antidepressants. A team approach is so critical to treating anything chronic, and makes everyone's lives easier and less painful. In the end, the bottom line is that doctor's aren't the experts on your body, you are, and you need to stick up for that fact.

Thanks so much, you beauty!

Love,

Maya

Love As A Painkiller

Even when I was enduring my worst pain last year, I'd immediately feel better as soon as John was nearby. I know that sounds cheesy, but his presence made me feel like a million bucks: warmer, more comfortable, and as if I had just taken a double dose of painkillers. I'm always telling John that he's the "best medicine out there" and, as it turns out, there's a scientific reason for that...

"In a study involving a group of lovelorn Stanford undergrads, researchers discovered that high-octane romantic love might be a natural analgesic." Check out the article: Romantic Love: Nature's Painkiller?

If romantic love isn't an option right now, check out this article in Arthritis Today: Pain Relief Without Pills, Learn 15 ways to go beyond the bottle to conquer arthritis pain. I'm wishing everyone pain-free days, no matter how you get there.

Love,

Maya

Spotlight on Megan Bonstein: Candidate For Woman of The Year!!!

My friend and classmate, Megan Bonstein, is quite simply an incredible woman. As a two-year survivor of chronic myelogenous leukemia (CML), she is "thrilled and honored to be a candidate for the Leukemia & Lymphoma Society's Woman of the Year for the New York City Chapter!" Her spotlight is below, so you can read more about her amazing story. The campaign kicked off on March 10 and will end on May 19.  Each dollar that Megan raises for LLS counts as a "vote" and the candidate with the most "votes" is named as the Man or Woman of the Year. Please read more about Megan and consider donating to Team "MegaHope: Gratefully Giving Back!" Below you'll find an interview I did with Megan - first about her campaign and then about living with chronic illness! Enjoy...

Click here for Megan's awesome site & to donate!

What made you go for this now? 

What better time than now?  This campaign is a great opportunity.  I decided to accept my nomination for many reasons.  I really want to raise money that will directly impact people's lives, and with my personal connection, impacting patients and survivors of blood cancer has special meaning to me.  I believe that direct impact can happen with the Man and Woman of the Year Campaign.  I just passed my two-year anniversary of my CML diagnosis.  Being a candidate is the ideal way for me to raise awareness, give back, and mark my two-year anniversary.  Luckily, the campaign team is from all over the Eastern United States, so we can get the word out in many communities.  The goal is to raise money that will create life-saving possibilities through new research while building on some of the current successes in treatment that have helped people like me.  I'm very excited to get started.

What would it mean to you if you won? 

As my boyfriend Elliott said, "whoever wins, blood cancer loses!"  I agree!  It's a tremendous honor just to be a candidate.  It would bring me great joy to win Woman of the Year, mostly because it would mean my campaign team and I worked hard and were able to raise a large amount of significantly needed funds.  Also, it would allow me to continue raising awareness and advocacy in a unique role.

How can readers help you? 

Readers can vote for me starting March 10 by making a donation, and passing on the website to friends or families who may be interested in learning more, making a donation, or otherwise getting involved.  Any contribution is deeply appreciated.  We will also be having events in different locations around the country, so stay tuned for updates.  If any readers have questions or ideas of ways to get further involved, contact me at megansue@gmail.com. 

What is the year you were first diagnosed? How old were you ? 

Endometriosis - Diagnosed 11/11/08.  Age 24. 

Chronic Myelogenous Leukemia (CML) - Diagnosed 1/27/09.  Age 24. These conditions are not thought to be related in any way, 

however the process of diagnoses was related.  I had undiagnosed pelvic pain and heavy periods for years, then started having problems with rupturing ovarian cysts.  Finally I received a diagnostic laparoscopy -- a minor outpatient surgery which resulted in the discovery of endometriosis.  After the surgery, I had extensive bruising across my abdomen and pelvic region.  Having never had surgery before other than as a baby (which I don't remember) and on my wisdom teeth, I did not know that the bruising was significantly more than "normal" until I had a follow up with the OB/GYN who performed the surgery.  She saw the bruising and urged me to see a hematologist.  The hematologist I originally saw found the actual mutation in my blood that causes CML (the Philadelphia chromosome), and I was diagnosed and referred to a specialist at the Weill-Cornell Leukemia Program.

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

For someone diagnosed with any chronic illness (including endometriosis and CML), there are a few things I would say:

First of all, you are not alone. No two people have the same exact experience even if they are the same age and diagnosis, but there are others out there who can relate. Getting involved and reach our to find others with the same (or similar) illness can be very empowering.  The loneliness and isolation that can accompany chronic illness may not ever go away completely, but it has helped me tremendous to plug into communities where there are others going through similar things. By getting involved and meeting others with your same diagnosis, there is a lot of reciprocal education that can occur about treatments, side effects, new research findings, etc. This wil help a person get information and support, and also an opportunity to give information and support to others. And getting involved is also a great way to form friendships where the disease is NOT always the topics of conversation even if there is a shared diagnosis. Reading about the newest illness-related events, research, etc. is very helpful, but it took me a while to be able to do that without feeling overwhelmed. 

Experiencing chronic illness is overwhelming and it can be a major bummer. It can bring on so many emotions. Don't apologize for any of this and don't feel afraid to find a safe place to talk about what you're going through. Make sure you voice your concerns to doctors/nurses.medical professionals. Be your own advocare, and if you feel it is helpful, bring a friend or family members to your doctor's appointments. As much as no one would "Sign up" for any chronic illness, I do believe with all the ups and downs, it builds enormous inner strength. You are so much stronger than you will probably ever know.

Please explain a bit how your condition affects you. 

Endometriosis: The cause of endometriosis is unknown and there is no cure.  I have most likely been experiencing endometriosis since puberty.  For me, the symptoms have historically included very heavy, painful periods, cramps throughout the month, bloating, abdominal pain, pelvic pain, ovarian cyst ruptures, and fatigue.  Endometriosis is thought to be an immune disorder, and may explain the fact that I have always been susceptible to "catching whatever's going around."  Since being on continual hormonal treatment, I no longer have 

a monthly period, so menstrual-related symptoms are much lessened.  All other symptoms remain present but improved.  There are times when I have  hot water bottle on my belly for days, and times when I barely notice any pain.  I have personally found acupuncture to be helpful for pain management. There is a significant chance that my fertility could be compromised by endometriosis, but I won't know that unless I decide to try for children.

CML:  The cause of CML is unknown in my case, and there is no cure.  The only potential symptom of CML  I ever displayed was bruising.  I had been feeling a bit of fatigue around the time of diagnosis, but that was not out of the ordinary for me for years, so it could have been due to the endometriosis.  More than ten years ago, CML was usually treated with a bone marrow transplant, which is a very risky procedure.  Since the advent of Gleevec, the first of a class of drugs called Tyrosine Kinase Inhibitors (TKIs), CML patients have often been treated instead with TKIs.  The survival rate has gone way up with this new class of drugs.  They may be sometimes referred to as "soft 

chemo" and are taken orally.  I was very lucky to never be hospitalized long term, never go through traditional chemo or raidiation with hair loss.  That being said, I did not tolerate treatment well initially. As a chronic cancer, this is a cancer people which people "live with" on treatment indefinitely.  The biggest problem has been dealing with side 

effects.   I was first put on the TKI Gleevec, which caused severe rash, headache, extreme bone and joint pain, thinning hair, muscle cramps, 

anemia, vomiting, diarrhea AND constipation, puffiness around 

the eyes, bloating.  Even with these side effects, the Gleevec was incredibly effective at fighting the CML and I had a complete molecular response within about eight months.  I am so grateful for the swift response to treatment I had.  Once the leukemia was deemed undetectable, I was eventually switched to Tasigna, a newer TKI.  Thankfully, I have tolerated it much better, but continue to live with side effects--mostly joint pain and muscle cramps.  The biggest change over time has been the improvement of my day-to-day living with the change of my treatment.  If I decide to have children, there will very likely be some challenges as I should not be off treatment for a very long period of time but cannot be pregnant on any TKI.

The hardest thing to cope with for me is knowing if and when it's

 appropriate to share the fact that I am living with chronic illness.  I am very interested in speaking with people living with multiple chronic illnesses, because I am certain there are many people out there who fit that description.  My life has been deeply impacted by chronic illness and I am not ashamed of that, but it is also not definitive of who I am, so separating all that out can be challenging.  Another very hard thing is just the fact that life feels a lot more unpredictable as a direct cause of chronic illness.

What are 3 things you couldn't live without? 

Family, friends, and creativity.

What are you most proud of? 

How far I've come.  I could say much more about this, but in the simplest terms, that is what I'm most proud of.

Where do you get your strength? 

My family and friends are incredibly supportive.  I have found strength within myself as I've continued to do lots of soul-searching and as I've continued to strive for optimum wellness. Being involved with people and organizations, plugging into the community gives me strength, whether it's a chronic illness community or not.  Having opportunities to be creative is incredibly empowering (whether it's writing, photography, drawing, designing, etc.).

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

To the medical professionals who have positively impacted my life, thank you!  To all medical professionals:  I hope as all my good doctors have done, you will listen to and be present with your patients; it is an integral part of care.  Please keep up the 

good work on finding life-changing treatments and cures...and 

thank you for your long hours and dedication!

 Thank you so much Megan! You're a true role model and we'll be cheering you on!

Love,

Maya