[Again, I want to apologize for the lack of writing lately. It means more than I can say that so many of you have noticed my absence and have sent messages of support and hope. I've just been sorting through more than I quite know how to handle, but as soon as things settle a bit, I'll be back. I promise.]
I did want to share a great cause with you today, though! After seeing what compassionate readers I have (yep, you guys are pretty much the best), John's cousin Katie asked if I would post about the marathon she's running this weekend to support the Make-A-Wish Foundation. As Katie mentions in her letter below, Make-A-Wish personally touched us all in 2008 when they enabled John's sister Laura to meet all of the New York Giants! (although I think the Giantswere the lucky ones). It was a wonderful day.
Even if you aren't in the position to support Katie's run monetarily, I'm sure she'd love messages of support, so comment away! Thanks for reading and I'm wishing you all health and happiness every day.
On Halloween this year, in lieu of dressing up in a costume, causing trouble, or many other activities, I will be running 26.2 miles in the Marine Corps Marathon in Washington, D.C. This year, I am running for the Make-A-Wish Foundation, a cause I have supported in the past. As you probably know, the Make-A-Wish Foundation grants wishes for children who have life-threatening illnesses - giving many children, who often spend more time in the hospital with doctors and nurses than most people will in a lifetime, the opportunity to forget about being sick and just be a kid. A family trip to Disney World, a special ballet class with the New York City Ballet, meeting a favorite sports team and/or player, even wishing for a pirate ship playhouse; if a kid wishes for it, the Make-A-Wish Foundation does everything in their power to make it happen. I have seen the magic of the Make-A-Wish Foundation first-hand, as I have a cousin who got a wish granted to go the American Girl doll factory in Chicago years ago, and her sister received a wish a few years ago, by meeting the New York Giants on the field, and attending a game as their guest.
Since 1980 the Make-A-Wish Foundation has been able to grant wishes to over 193,000 children all over the world. The Make-A-Wish Foundation is a great cause and is only able to continue to make wishes come true for children through donations. Please join me in helping more wishes come true with your donation.
John has been the subject of a few posts before, but writing about him inevitably gets me tongue-tied. It's no secret that the past several months have been a chaotic mish mosh of medical hurdles, painful and personal struggles, and a whole lot of "waiting it out." Throughout it all, John has been my rock and the element of my future I can truly count on. I knew he'd be there when the going got tough, but I never anticipated just how natural it would be; how safe and loved I'd feel amidst this turmoil.
John is everything I could ever need in another person. He is my best friend and the one who makes me feel most like Maya. When we're together, we're always laughing and my pain eases (often it disappears completely). Nobody could make me feel more beautiful than he does and, after four months on steroids, he has managed to make me feel more adored than ever. Things seem lighter and warmer when John's around. I love the kindness he shows strangers, our mutual and intense longing for a dog, and our similar taste in TV shows. I love trying new restaurants together, the way my hands fit right into his, and the thrill of planning our future together.
Obviously I could go on, but on top of all we are together, it's obvious how deeply we support each other as individuals. No matter how many health issues I'm juggling or how distant a steady career feels at the moment, he believes in me. His confidence and pride in me mean the world. As he tackles his third year of medical school and endures grueling, 24 hour shifts in the hospital, I'm in awe of his drive and work ethic. He knows his purpose is to help and approaches each day with dignity and passion. Quite simply, I'm proud to know him - let alone to be his partner - and the truth is I love him more every day.
Before I embarrass him too much (okay, I'm sure it's too late for that), I'll wrap this up. But what would "Loving With Chronic Illness" be without the occasional love babble?
I'm sorry for being so absent! It's been a struggle just getting through the days lately and so blogging has taken a bit of a backseat. Thanks so much to everyone (family, friends, readers, and perfect strangers) who have been sending me love and prayers -especially this past week. Each word and gesture has stuck with me and is slowly, but surely getting me through.
As I wrote last time, I had my first Orencia infusion last week. As I stepped into the hospital that day, my anxiety was through the roof. Physically, these past few months have been the hardest of my life. I've lived with pain I never knew before and swallowed tremendous disappointment when Remicade didn't work. I've put my body and health into the hands of specialists I've never had to see before. I've toughed out a painful allergic reaction for a month and dealt with the unpleasant, appearance-altering side effects of steroids (the only medication keeping my disease at bay). I've learned a lotabout patience and faith and allowed myself to be taken care of by people who love me. In fact, I've had no choice. I didn't know just how much I had riding on Orencia, but I nearly lost it when the IV started dripping. There were so many thoughts racing through my mind: Would I have another allergic reaction? Would they be able to complete the infusion? Could everything be delayed even more? If my body accepted it in, would this be the drug to get me back on track? Could this be my answer?
The truth is, I want my health back like I've never wanted anything. I want to exercise and enjoy my body. I want to sleep normally, breathe easy, and be held without hurting. I want to sing and dance and travel to see the people I love. I'm trying not to see Orencia as my only option, but that's much easier said than done. This week has also been pivotal because I started seeing a pain doctor. Although he made some huge mistakes and put me on doses that were FAR too high for my body (messing with my emotions and causing me to nearly pass out in classes), he did do one very positive thing. He confirmed that I'm also dealing with Fibromylagia - something that's been speculated since I was a kid. Once the diagnosis of Spondylitis was made at age 15, this idea became secondary to my rheumatologst at the time and was just kind of dropped. However, Fibromyalgia is a disease that is also characterized by widespread muscle, joint, tendon and ligament pain and has a high correlation with other auto-immune disorders.
According to the MayoClinic website, "Researchers believe repeated nerve stimulation causes the brains of people with Fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters)." In short, my body has had it! It's been explained to me that our systems can only handle so many prolonged, intense pain messages before they go into "overdrive." This explains the physical distress I've been in, particularly in the last few weeks. Subsequently, both my rheumatologist and I are not entirely convinced that I will always have Fibromyalgia. It's possible that once the Orencia kicks in (knocking on all things wood in my apartment), the nerves will stop over-firing and I'll return to a much more normal state of "Maya-ness."
Here's some great news! Because of the Fibro diagnosis, they've started me on Lyrica - the approved drug for Fibromyalgia. While I don't want to get my hopes too high, this has been my only reprieve from my pain in months! Since starting it for the first time this past Monday, I've gone from a consistent "7" or "8" (where all I could think about was my pain) to a comfortable "2" or "3." I nearly forgot what this felt like. I've slept two full nights which hasn't happened since the beginning of the summer, walked 10 blocks yesterday when I could barely stand last week, and am on no other pain medication (when I was living pain pill to pain pill last week). We're still working out the dosage of Lyrica because it makes me dizzy, forgetful and sleepy, but this could be the start of something very good... And could it be I'll feel even better if and when Orencia does its thing? I'm filled with a renewed hope.
Sheesh! That was a lot of medical information to throw at you, huh? I think I'll end here. For now, know that I appreciate your patience and that I'm working hard to get back to a healthy, happy, consistently blogging me. I'm wishing you all many pain-free days and thanks for being along for the ride.
PS: I know many people who read this blog cope with Fibromyalgia. If you want to reach out to me about your experiences with this disease and/or the treatment for it, I'd be very grateful.
The sun is coming up on what feels like a very big day for me. If you've been reading along, you know I've been on a serious pain roller coaster since July when my Humira injections stopped working. To put it bluntly, I've just about reached the end of my rope. Each vertebra is on fire, each step hurts and every breath is an aching chore. But today I'll be getting my first IV Orencia infusion - something I've been looking forward to for weeks. After trying Remicade last month and suffering a severe, allergic reaction, I couldn't add anything to my system until I was back to normal. So, although I've been getting by on a high dose of daily steroids and pain medication, the raw disease is breaking through and boy, do I see what I'm up against.
I'm trying to remain cautiously optimistic about Orencia. After all, my body could reject this too. Still, I have hope that it could be my answer and I'm going into the hospital with that belief at the forefront of my mind...combat-style. Both of my parents will be joining me for the infusion today (I told you they're the best and with me every step of the way). I'm also going to put a little request in for all the good vibes, prayers, and love that you can send my way today. I know it will help!
It's not easy to write about the extent of my pain (mainly because I know how sad it makes my family), but I started this blog openly and honestly and refuse to stop when it gets rough. On top of that, I know the people who read along genuinely care about my well-being. While I've been told that many of you benefit from my writing, it's you who give me strength. Because of Loving With Chronic Illness, my knowledge-base, my hope, and my support system have all grown exponentially - across generations and continents. So many of you have cared enough to really ask how I'm feeling and then genuinely seek updates. You can't know what that means.
Four special ladies in particular have come to me through this blog and I woke up with this poem in my head for them the other day...
Living To Do
My veins are cold and I'm sitting with my tuna and juice
alone for three hours more. And then again
you're all here no matter where you are
since hurt binds us.
The IV drips and all I see is Cathy's blue bike,
her smile, and her good knees working. All I see
is Jodi's lens through which the whole city seems to breathe.
She's snapping shots of legs and benches
and the medicine's halfway in me now, but I know
Kate's halfway around the earth waking. She's got tea on the stove
and kangaroos in the yard and a mind full of love for the world.
She'll see it all soon enough—pain or no pain—
The bag's running low now and I know Betsy's boys
are loving something new today (Yoda or bugs or maybe even girls)
and their mama's pain is nothing like her love for them
and everything new in their eyes. The last drop
and they're all here; there's so much living to do.
I want to send a huge congratulations to Margaret for not only finishing her bike ride to support Friedreich's Ataxia (FA), but for kicking some serious butt! She rode ten very hilly miles in well under and hour...and still looked cool doing it. Sadly, my pain has been pretty out of control lately (I'll write more about that later) - it was bad enough this weekend to stop me from being able to travel to Philly to cheer her on. Although I couldn't be there physically, I hope Margaret could feel me with her on that bike. I'm so proud of her! I also wanted to extend a tremendous thank youto all of our friends and family who so generously contributed to fundraising. Margaret's initial goal was to raise $4,000 for FA Research, and are you ready for this? She ended up collecting a grand total of....
(drum roll, please?)
If you're anything like me, you're speechless. One mom riding for her two beautiful daughters...and look what came of it. I pray that this is the money that's needed to help us find a cure. If you wish to donate still, her fundraising page is still open and any little bit goes a long way. Just as I shared Margaret's initial letter introducing her endeavor, I thought I'd end by sharing her post-ride letter. Enjoy...
Dear Friends and Supporters of the Ride Ataxia;
I have been overwhelmed with support from you all. Thank you for giving from $10 to $5000! I was showered with your donations and at this point my total stands at over $22,600! The event exceeded its $125,000 goal also. You can see that Team Ferrarone made a good contribution toward that event goal.
I was so happy to be joined by my son, John, for the two days in Philadelphia. Although we missed his girlfriend, Maya, we had a good time together and his support was very appreciated. I also got to meet up with old friends who are in this fight for a cure with our family. So many came, families, friends and those affected by FA. Many “FAers” rode recumbent bikes and I was really awed by that. This was not an easy ride and the hills were as promised, KILLERS! As my one friend said as she crossed the finish line…”I will never do that again”! I have a whole new idea of what good training might have meantJ I did fine though and finished the course in good time. I was a little wobbly when I got off my bike, however. Attached are two pictures; one of me and John before the race and another of Terry and Marilyn Downing (right of pic) and two of their friends, after our finish. And no Tom K, there is no YouTube footage to share!
As an update, Sara did not qualify for the UPENN study and she was a bit disappointed in that. Her neurologist, David Lynch, of whom I can say nothing but positive, has ideas for giving her the drug in an open label status. So now we have health insurers to manage through the process. We stay ever positive though and hope that there is a “cocktail” of drugs that will bring the disease to a halt or minimally slow it down.
The Ride Ataxia began with one young man who has become an inspiration to so many who suffer with FA. I am attaching a link to a documentary (www.theataxian.com) that was completed on Kyle Bryant. Although Kyle walks a bit, he is now in a wheelchair. His onset of the disease was later than that of my two daughters but, he knows the challenges and has done so much for the cause. Kyle participated in the Race Across America this summer…3000 miles in grueling conditions over 9 days. Please watch, you will love him and you will be inspired! I give him credit here because he is a hero to me and to everyone who meets him. Thanks Kyle.
So ends the saga of Ride Ataxia Philly 2010. I can’t thank you all enough for your cheers, prayers, good wishes and for giving from the heart. I hope I can do this again next year albeit, in better shape and a little less intimidated with the whole idea. Bless you all for blessing us.
Margaret, Bob, John, Sara and Laura Ferrarone
I also want to say Happy Anniversary to my amazing parents, Judy and Mark! They've been together since high school and that's incredibly inspiring to me. Here's to 4 more decades...
I've alluded to the refreshingly stable state of mind that I've developed over the past several weeks. Through all the medical chaos and uncertainty, I've been trying to stay present; take each day as it comes and remember how many gifts I've been given over the years. One of those gifts has been the phenomenal connections I've made through this blog. When I started out writing this past March, I never expected Loving With Chronic Illness to be read by so many people - let alone people with whom I share a unique, real-life bond. It also never occurred to me that I could meet my readers one day!
And then Betsy came on the scene. I've referenced her quickly on here several times, mostly when she sends me a moving poem, a delicious comfort food recipe, a radiant bunch of sunflowers on my worst days, or a slew of other thoughtful gestures. We met for the first time this past August when she came to New York City! Not only was it comforting to meet someone with the same disease, but we had an amazing evening! We shared some stellar New York pizza, indulged at Serendipity, and Betsy was photographed for Jodi McKee's portrait project (see the September 15th post). Our rendezvous also happened to coincide with my worst period of pain yet and, while it was hard to have someone see me in that condition (especially someone new), Betsy made it okay.
It seems that, despite her battle with chronic illness, Betsy's thoughtfulness and energy are boundless when it comes to the people she cares for. She treats each friendship like a treasure. This is something I deeply admire in her, but it's just the tip of the iceberg. Betsy and I share many things, including our disease. Having only been given an official diagnosis of Spondylitis this past year, Betsy wasted no time acclimating herself to this condition, assembling a trustworthy team of doctors, finding the strength for herself and her family, and soldiering on. To help her cope, she also hasn't let her hobbies - yoga, gardening, home decorating, baking, entertaining, and all things artsy - fall by the wayside. Betsy doesn't just cope...she thrives.
As a mother of two young boys, Andrew (almost 7) and Caleb (age 5) and a wife to her husband Darren for 9 years this month, you'd think she'd have her hands full. But Betsy has also always been an active volunteer - both officially, with programs such as MOMS (Ministry of Mothers Sharing), and unofficially whenever a friend would need a helping hand. No matter what changed around her, this desire to help stayed constant. Although Betsy had always consider social work as a career, her undergraduate degree was in psychology so it made sense to start pursuing her Ph.D. in counseling psychology instead. She decided, however, to take a year off before applying to this graduate program. During that time, Betsy worked at the Mayo Clinic's cancer center as a statistical programming analyst in the cancer center. She recalls, "this was not my cup of tea! i am more of a people person than a computer person." During and after her pregnancy, Betsy first started having health problems and made the decision to resign and become a stay-at-home mom.
Her love for her family and her boys is endless (i.e. today she's putting on an amazing Star Wars birthday party for Caleb). Betsy says she's happy she made the decision to stay at home with the boys, but also "never guessed how difficult being a stay-at-home mom would be for me."
Betsy took a course called justfaith which renewed her interest i pursuing social work. She returned to work at the Mayo Clinic coordinating research for living kidney donors in the transplant center. Again, this validated her desire to become a social worker. Betsy recalls,"the colleagues that I most respected in the transplant center were the social workers." She decided to spend her time preparing for an MSW and enjoying her beautiful boys until they were both in school all day.
The brings us to the present day and Betsy is still kicking butt and taking names. She has now started in on her MSW, taking one course this fall to "get her feet wet." She raves, "it's invigorating to be around people who think and feel like me. i just gave my first presentation last weekend and not only survived it, but thrived at it! loving it!" While Betsy is passionate and hopeful about her future as a social worker, she is still impressively realistic. She understands that juggling a young family, academic obligations, and an unpredictable chronic illness such as Spondylitis wont be easy. She says, "I know that i could flare or progress at any time, so there is uncertainty but i have decided to accept that rather than fear it. " Despite the uncertainty, she is following her heart and - really - isn't that all any of us can do?
Thank you for inspiring me, Betsy, and for being such a great friend. Now I'll let her lovely words stand on their own...
What is the year you were first diagnosed? How old were you ?
Just this past year. I was 31.
What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?
There is hope. There are many approaches to treating this disease. I think having faith in your physicians and care team is essential. No question should be disregarded and you need to seek the treatment approach that you are comfortable with. There are endless treatment and lifestyle choices to explore. Also, the scientific understanding, research, treatments, and prognosis are constantly evolving with this disease. Although I was initially shocked by my diagnosis which sent me into a deep depression, I am now grateful for the diagnosis in that at least I don't have to keep wondering what is going on, and of course treatment designed for the disease you have is always better than treatment for something you don't have! I do have hope that advances will slow the progression or even bring a cure.
Please explain a bit about how your condition affects you (for example: what are the symptoms and what is the hardest part to cope with? Has the disease changed over time? etc.)
Since I am newly diagnosed, I can’t speak for much change over time. I can tell you that I lived for over a year (if not more) misdiagnosed. I was almost put through emergency spinal surgery as a result of my misdiagnosis. Inflammation in my sacrum extends into the lumbosacral plexus which causes shooting pain down my legs along with localized sacral and pelvic pain. I am quite fatigued, which is difficult as a mother of 2 young boys. This has been an emotional roller coaster for me. The most difficult thing is trying to create normalcy in the lives of my boys in spite of the endless appointments, treatments, and therapy.
What are 3 things you couldn't live without?
My beautiful boys, supportive friends, and outstanding physicians.
What are you most proud of?
I am pleased that this diagnosis has not stopped me from pursuing my dreams of completing a Masters in Social Work. I will just need to take my time and be a little more creative with my education.
Where do you get your strength?
I know I need to be the healthiest and happiest mother possible for my boys.
If you could send one message to medical professionals around the world, what would it be? I can’t slam the medical profession. I live where the majority of my friends work for the Mayo Clinic. I know that doctors, nurses, pharmacists, and therapists are human—they are mothers and fathers—they face adversity in their lives—they do not always have good days. Expressing empathy and admitting to their mistakes goes a long way. The physician who misdiagnosed me with a herniated disc for over a year, apologized that he didn’t catch it sooner or do more extensive imaging. He also was the one who a year later listened to my deep frustration with my first rheumatologist’s approach and referred me to my current one whose attitude and treatment approach matches me best. An open, honest, and empathetic patient-practitioner relationship is beneficial not just to the patient and physician, but also for future patients and advancements.
I'm living in New York, studying social work, and making time to be Maya: a daughter, a sister, a fiance, a friend, a writer, an animal lover and someone coping with 2 medical conditions (Spondylitis & Fibromyalgia). Every day I'm learning to live and love not despite chronic illness, but because of it. I treasure my readers, so please comment or write to me at firstname.lastname@example.org. Thanks for stopping by!