Thursday, September 29, 2011

The "Bad Vein Club" & Choosing Gratitude

 If you're unlucky enough to belong to the "Bad Vein Club," you know it can impact your quality of life...especially if you're chronically ill.

 Unfortunately, needles have played a leading role in my story. When I was a little girl in a large amount of pain, the first step was always blood work. Each time a new doctor entered the scene; each time a symptom arose; whenever a new medication was prescribed, my blood was constantly monitored and it will continue to be this way for the foreseeable future. 

While it's all been necessary, it's never been pleasant. In my 25 years, I've sat in hundreds of fluorescent exam rooms. Someone inevitably asks, "Has anyone told you how bad your veins are?" and I nod wearily. It can take anywhere from 2-6 attempts for a successful blood draw, and when it's all said and done, I'm left feeling like an over sized pin cushion. I became accustomed to this scene from a young age, and have learned when to move into autopilot. In those moments, I focus only on my breathing. As the needle goes in, I breathe out; the needle comes out, and I breathe in...
I live some version of this every month while receiving my Orencia infusions. When I began this medication last fall, I knew it would mean more time spent in the hospital, more nurses, and more needles...but I didn't care. Without effective medication, my disease was  raging out of control, and showed no signs of letting up. Each muscle, joint, tendon and ligament burned like small wildfires. My outlook was bleak, my fatigue was overpowering, and I was beginning to feel hopeless. I needed my health back like I needed air.

Three months after receiving the first dose, the pain began subsiding, and I began seeing those same "bad veins" quite differently. Instead of resenting them, I gave thanks for them. I knew my body could have easily rejected this new drug, but I was one of the lucky ones. Each month I watched as my miracle drug flowed into my arteries and, instead of medication, I saw possibilities....

Drip

Here's to helping myself out of bed in the mornings....
                           
                          Drip

...To playing tirelessly with my dogs, and bending down for sloppy kisses...

Drip

...To hugging my fiance without pain...

          Drip

...To getting in my car and just going...

    Drip

...To holding up my end of friendships, and weekends away with the girls...

                         Drip

...To the hope flowing through me. 

With this new perspective, came a new experience at my monthly infusions. Call me crazy, but I've actually begun looking forward to them! My mom accompanies me each month, and on the rare occasion when she isn't able, another loved one takes her place. I treasure this quality time with her, and feel so grateful to have her by my side. She's been there through the good times and the worst times, and I truly don't know where I'd be without her.

While the needles will never be enjoyable, I've come to appreciate a window of time intended just for me. For those few hours, I know I'm actively choosing to care for myself, to re-fuel, and to fight for my health. And, while I know my body could always stop responding to Orencia, I choose gratitude...gratitude for modern medicine, for my mother's loving hand, and for another month of relief.

Tuesday, September 27, 2011

Beautiful New Giveaway! Win A Handmade Heart Keepsake Box







No matter how wonderful our support systems may be, there is a certain loneliness that comes along with having a chronic illness. It's hard to explain unless you've lived it, but I suppose anyone who has had significant struggle in their life (health-related or not) knows what I mean. You can lean on other people, but at the end of the day, you are fighting this battle. Because of my struggle with multiple pain conditions, I probably require more "alone time" than the average gal. The truth is, I find tremendous peace in solitude and gain my greatest insight through reading and writing (hence, the blog). Of course, not everything I think is intended for the public eye. Stick with me here - this thought relates to today's giveaway...



was excited when my friend Betsy introduced me to Susan Kosharek, a talented artist from Rochester, Minnesota. Susan owns her own company called Muse Zings and also has an Etsy store. My mother, who is an amazing artist herself, has always said she is drawn to artwork that "doesn't take itself too seriously." I've definitely inherited that tendency from her. For example, I just purchased a silly, painted zebra head on which to hang our keys. It's right beside our front door and just makes me smile every time I see it. Susan's work has the same effect on me. If you scroll down, you'll see several wonderful examples of her pieces (furniture, mirrors, birdhouses, etc) and I think you'll see what I mean.


And now the exciting part! Susan has graciously offered to host today's giveaway. I jumped at the chance, knowing you would all love her work as much as I do. And here's where that first paragraph ties in. Susan is offering a beautiful "Heart Keepsake Box" (pictured at the top of this post) to one lucky reader. This special box opens to reveal rice paper; a space to write personal messages, special memories, inspirational quotations, etc. I just love that idea! As I said, there are just some things that aren't meant for the world to see; poems, phrases, thoughts that need safekeeping. I can't think of a better place to store your treasures than in this beautiful box.



You can enter this giveaway a total of 3 times...

For entry #1: Go to Facebook.com, "like" Muse Zings, and don't forget to leave a comment on this post letting me know you did. If you don't have Facebook, then head over to Susan's website and take a look around. Then leave a comment on this post telling me what your favorite creation is.

For entry #2: Please give me a little feedback about this blog. What's working for you? What might you like to see me do differently? Are you hoping to see a post about something that I haven't covered? I'd love to hear from you!

This contest will run until Tuesday, October 11th (2 weeks from today). The winner will then be chosen at random and announced the following day. Good luck everyone!

Love,
Maya

Saturday, September 24, 2011

Spotlight On Those Who Love Us: Marian Brown


My life has been blessed with incredible women, and my future sisters in law are no exception. I first met the Ferrarone family when I was 16. I was volunteering at Sunshine Rotary Camp - a special week for kids and young adults living with Muscular Dystrophy.  Each counselor was assigned to one camper and, although I never worked one on one with the girls, we developed a unique bond over those years. I was immediately drawn to their strong, beautiful sprits. Little did I know, they'd soon be part of my family.
Laura (21) and Sara (24)
While each of the Ferrarones have enhanced my life, they've also introduced me to a slew of amazing people. Marian Brown, for example, has been Sara's best friend for the past 19 years. She is a bright spot in all of our lives, and although she and Sara live far apart, distance is no match for this awesome duo. They are truly each other's chosen sisters and I love seeing them together. 

We're all better for knowing Marian, and today's spotlight will underscore that. Sit back, relax, and get ready to read about two remarkable women and the power of friendship.







Who in your life is living with chronic illness? Please say a bit about the disease itself and when they were diagnosed.



My best friend in the entire world, and my biggest hero, Sara Ferrarone. Sara was diagnosed with Friedreich's ataxia (FA); a progressive neuromuscular disease when we were finishing kindergarten. Her younger sister; who I consider to be my adoptive little sister, Laura, also has Friedreich's ataxia. Laura was tested for FA, and subsequently diagnosed, immediately following Sara's diagnosis (so Laura was two or three when she was diagnosed). Maya, the wonderful woman who keeps us all updated and educated via this blog, is engaged to Sara and Laura's older brother, John. So, the girls are her sisters as well. 

Friedreich's ataxia is an autosomal recessive genetic disorder. This means you must get a copy of the defective gene from both your mother and father. So, it's onset is birth, but depending on the exact gene you get the progression of the disease can differ. About 1 in every 22,000-29,000 develop this disease. Family history of the condition raises your risk. It is a very rare disease, and mainly affects the muscles and heart. 
Symptoms are caused by the wearing away of structures in areas of the brain and spinal cord that control coordination, muscle movement, and some sensory functions. Symptoms generally begin in childhood before puberty. 
As a child, I always described FA to friends as the following: It's like there is a small monster sitting on your spinal column that slowly chews away at all of the cords that lead to the rest of the body, i.e. your neural pathways, so that it becomes difficult for your body and brain to effectively communicate. 
If you'd like to know more about the actual disease and medical implications please click here.


What is your relationship like?
Every day I feel so blessed to have Sara and Laura, and the entire Ferrarone family in my life. I could not ask for a better group of people to call my second family, and to love eternally. Like all relationships that start in childhood, my relationship with Sara has evolved drastically in the 19 years we have known one another. Today, our relationship is centered around laughter. For the past seven years, I have lived 2,000 miles away in Colorado, so our main modality of conversation is emails. I wait anxiously as I open my gmail account hoping to hear from Sara. I find myself smiling as I get to read a page into her life. Today, she swims, horseback rides at Equicenter, bakes the best cookies in the world, makes scrap books for those she loves, and just brightens the world with her presence. When I come home to NY in the summer for a visit Sara always has epic plans set up for us. Last summer we spent countless hours at her cabin in the Adirondack Mountains making crafts, watching Glee, and talking about the woes and realties of life. We also went out venturing in their off roading four wheeler - quite the adventure! I'm not sure if Sara has recovered from my driving yet! I long for my adventures with Sara, and the wisdom and love that she brings to my life and all of the lives of those who know her. She has a fantastic child-like sense of wonder about the world, and a sensitivity to others that is unparalleled.


This summer, while visiting I had the privilege of meeting her new boyfriend, Kody. Kody works for a wheel-chair company, and they met when he came over to their home to repair her chair a few months ago. Kody’s involvement in Sara’s life has opened a whole new chapter for her. My boyfriend, Jon, also visited from Colorado. We had a great time at the lake house, and - like always - I smiled endlessly from listening to her belly laugh. Sara seems the happiest now I have ever seen her, regardless of different health ailments that bother her daily. 
Twenty-years later, I still remember the day we met on the bus like it was yesterday. There she was: long blonde hair, welcoming smile. Like always she had matching braids, and fantastic over-alls that were all the rage in the early 90's. Even at five, I could see there was something different about this young girl. When she spoke to you, she looked right in your eyes with her piercing blue gaze. She talked about her animals at home, about her parents, and her brother and sister. She was utterly aware of the world and the people around her. Just like today, her love and passion for the world were evident. Just like today, her understanding of the world was much greater then I could or will grasp. I got off the bus, running all the way home so I wouldn't forget her phone number, 586-5867. It's hard to believe it, but I think I internally recognized that day that I had met one of life's greatest gifts- a soul mate of sorts. The past twenty years between us has been nothing short of tremendous. The amount that Sara has taught me, and continues to teach me daily; about patience, honor, virtue, humor, love, confidence, overcoming obstacles, and countless others, will stay with me long beyond my days here on earth. 
Sara and Laura both currently live with their parents, in upstate NY, where they each have full-time aids. Their mother, Margaret, retired in order to spend more time with her girls. They also live with Belle, their gorgeous black lab and George, Sara’s ice chasing cat. 

Has your relationship changed in any way following their diagnosis? If so, how?
Honestly, I don’t feel that our relationship changed following Sara or Laura’s diagnosis. I was accustomed to being around people with chronic illness (my mother, Dr. Susan Taylor-Brown is a social worker whose academic focus was on HIV/AIDS related issues). It was  simply another aspect of life, that we would adjust to. 
Our elementary school principal wrote a story about us at our fifth-grade graduation. She talked about us walking down the hallway together. I was holding Sara’s suspenders, making sure she didn’t fall. We were laughing, simply enjoying the time with one another. That seems to be the way it’s always been. 

What has been the most difficult part of coping with your loved one's illness?

The most difficult part of coping with Fredrichs ataxia has recently been the difficulty in communicating. Sara and I have always generally understood each other, but it is becoming increasingly difficult for her to speak, and for me to understand her. Thankfully Kody and Sara seem to have it down pat, so he is able to fill in a lot of the gaps, as is Margaret and Jackie (Sara’s aide who has been with the family for many years). Still, part of what Sara and I love the most is getting out on our own- the two of us, and that is when the communication piece becomes more difficult. Thankfully, we type to stay in touch when we are apart, and we are adapting new strategies to be able to talk more effectively in person. Sara is just such a brilliant young woman and I want to hear everything she has to say. 

The other difficult aspect of the disease is the progressive nature of it. The changes seem small over time, but when you look at the mile markers along the way it becomes difficult to swallow. I have been so lucky to have both Sara and Laura in my life, and there is not a day that I do not feel that way. When Sara and I were in third grade, our parents were called into a meeting. The teachers were concerned that Sara and I were too close, and that it would eventually be detrimental to both of us as we grew up. I looked at my mother (she retells the story, it seems to have escaped my own memory) and my teachers and said, “We all only have one life to live. We are all going to die. Isn’t the price of loving someone eventually losing them? We need to enjoy the time we have with one another. Don’t take us away from one another”. 

Where do you get your strength?

Sara & Laura give me strength. Margaret and Bob (their parents) give me strength. Maya and John (the girls’ brother and sister-in-law) give me strength . My parents and family give me strength. My belief in a life well lived, in the power of laughter and love, give me strength.
I am able to process love and loss by connecting with my family, and also through doing my own cathartic art. I make sure to step back when needed, but also to be 100% present whenever possible; to remember that every moment truly is a gift. 

What advice would you give to someone who also cares for an individual living with illness and/or disability? What helps you?
Just remembering that every single day that you have with that person is a gift. It's difficult for all of us to constantly stay in the present, and in order to love someone with chronic illness, it's really crucial to. Planning too far in advance leads to upset as plans often have to be adjusted, and are difficult to make. Looking in the past can be equally as difficult as it make us sometimes focus on the losses over time as opposed to the triumphs of today. If it's possible to focus your attention on the present with the people you love, there are no added expectations, plans, losses, gains, failures- you simply are able to love and be with them. Sometimes with chronic illness, our biggest gift can simply be the time we have with those we love. 

Also, set up a much needed support network for both yourself and the people you love. We are human, and we can't do it all ourselves. Loving people with chronic illness is difficult at times, and you need to make sure that you have someone there to give you the equal support that you are providing those you care for. 

 If you could send one message to all the medical professionals in the world, what would it be?
Medical professionals- I appreciate and 
respect all that you do. Hopefully technology and research will reach a point where we understand these chronic diseases and illness more completely so that in return, the future can be a bright one for both those affected by the disease and illness, and those that love them. I believe in your ability to work miracles, I have to. 



Wednesday, September 21, 2011

An Important Guest Post: Working with Chronic Illness


Working with Chronic Illness
Written by James Simpson

One of the toughest things about having a chronic illness is the inability to support yourself. Some sick people have families or a spouses to support them, but not everyone has that advantage. If you have an illness which keeps you housebound, free time can be more of a burden that a luxury. Working can help bring back a sense of purpose and accomplishment. It can also provide income and fill your time with something positive. Here are some ways you can generate money even if you are stuck at home.

Writing Articles

People that run websites are always looking for good writers. If english is your first language, you already have an advantage. Writing content can sometimes be a low paying job, because you are competing with workers from economically disadvantaged countries like India or The Philippines. But, the quality of these foreign writers can often be very poor. Website owners will many times pay a premium to writers that speak english as a first language and work hard to provide good service. If you are interested in writing articles for extra money, visit the website freelancer.com. You can setup an account for free and start offering bids on projects. You may have to write articles to provide examples of your work, before any of your bids get accepted. With some persistence you can bring in $50 or more per day. It is not a fortune, but it can help pay any bills and extra expenses.

Also, avoid websites where you contribute articles on a revenue sharing basis. This is a poor way to make money off of your hard work. Your best bet would be to establish an ongoing relationship with a site owner and work on providing them with the best articles that you can. Many times you can get your price per article up if you consistently provide good work.



Starting a Blog

The internet has come to be a dominant force in our society today. It's growth will continue and affect how everyone in the world does business. As more businesses come online, knowledge of the internet will become more and more important. One of the best ways to start learning and make a little money while your at it is to start a blog. Blogs are very easy to set up and are free on many services like blogger.com and wordpress.com. Focusing on a subject that you know very well can help you write great articles. Good content will help you connect with other bloggers and will give you more exposure.

If you really want to make money with your site, you might want to focus on a subject that pays well, especially financial topics. An example of this would be to start a blog about car loans. This might not be the most fun subject to write about, but if you worked on it for a solid year or two, you might have a money making site on your hands. You can monetize the site with programs like Google Adsense or sell the "loan leads" that you generate, to lead brokers.

Learn Web Design

The great thing about learning web design is that you don't need to go to school to do it. All the information that you need is already out there online. One of the first things you can do to get started is to get a copy of the software Dreamweaver. This can help you turn the complicated code that websites are built around, into a visual format. Working with this over time will improve your skills up to the point where you might want to do some freelance jobs. A good place to find these jobs would be at freelancer.com. You will have to make a portfolio and gain some experience before taking on one of these jobs, but this is a great skill to have in the Internet Age.

Part Time Jobs

One of the toughest things about working with an invisible illness is that it can be very difficult to make people understand your situation. If you decide to work a part time job, you might have to explain your situation to your boss. This can help you get some leeway, when it comes to things like hours and sick days. An office environment can be tough if you feel very ill, but getting out of the house is essential. Not everyone with a severe illness can work in an office setting. In this instance, a freelance internet job might be your best bet.
About the author


James focuses on the site Chronic Fatigue Treatments, which serves as an informational center for people with fatiguing diseases like Chronic Fatigue Syndrome, Fibromyalgia, Adrenal insufficiency, and Hypothyroidism. He also plans to improve the site by building a treatment rating system and expanding to include other illnesses.

Sunday, September 18, 2011

Love From Bermuda


Hello! Loving With Chronic illness is officially back in action, and I wanted to say thanks again for being so patient. Between our recent trip to Bermuda, a wonderful visit to see John's family, and the beginning of classes, I haven't had much free time. Rest assured, though...you've all been in my mind.

As I mentioned in my last post, Bermuda was incredible! The truth is John and I really needed this time together. Although we moved in together and got engaged this past June, we've had very little quality time together. Sharing a home is wonderful and we both cherish the small daily joys, like waking up and ending our days together. But because John recently began his fourth year of medical school, there just hasn't been much time to breathe. He's been confronting the natural pressures of becoming a doctor, and returning home with little physical or emotional energy left to spare. I was desperately trying to hold on to that shiny, new engaged feeling and dove right into wedding planning...especially when I realized that the whole world was apparently booking their wedding at the same time. John began studying for his board exam and applying to residency programs for next year, so wedding colors and cake tastings became low on his priority list.  It was as if someone hit the "fast forward" button on our lives, but we were simultaneously drifting apart. Suffice it to say, it was the perfect storm.

We knew that John's medical school schedule wasn't going to make things easy, but now the realities are quickly sinking in. I'm incredibly proud of his work ethic and his commitment to his patients, but it comes at a cost - both for him and our relationship We both knew it was time for a break, so when we realized he had 5 days off, the search was on for wallet-friendly vacations. We found a 4 night package to Bermuda, and the rest is history!


As soon as we touched down, we were surrounded by turquoise water, palm trees and islnders who were just as warm as the weather. We successfully left our stress back in New York, and went into full-fledged "vacation mode." When we reached our hotel (Grotto Bay Beach Resort), we soon discovered that we had two natural caves in our backyard! After we dropped our bags in our room, we rushed to explore them and were amazed by their beauty; the the stalagmites and stalactites, the crystal formations, and the gorgeous illuminated water inside.

John and I are perfect travel buddies, which was first apparent during our amazing trip to Italy last year. We both cherish new experiences, and would rather spend our time and money making memories than acquiring things. We both love learning and exploring; meeting locals, understanding history, tasting new cuisines, and seeing the sights. This trip was no exception. We were both seeking some combination of relaxation and adventure, and while laying around with tropical drinks was glorious, we also wanted to learn about the country we were visiting. John studied the local bus routes and, by the time we left for home, we had actually seen most of the island!

Undoubtedly the highlight of our trip (and perhaps our lives) was swimming with four gorgeous dolphins! We had decided that we'd do one special activity, so when we discovered there were dolphins nearby, the decision was easy! I had been lucky enough to do this once before with my dad, but never thought I'd get another chance. On our way there, we looked like two excited children on Christmas; we couldn't wait to share this experience together and meet our new aquatic friends.


When we arrived at Dolphin Quest, we saw several large pools filled with bobbing gray heads. Although the experience was quite expensive, we valued the program's commitment to public education, conservation, and research (click here to read more about their current projects). We met our trainer, changed into our gear, and lined up by the pool to learn more about these incredible animals. We could hardly wait to get in!

As we listened to the trainer speak, the dolphins swam by repeatedly, studying us with great focus and curiosity. Every 10 seconds, we noticed a little head popping up in the distance and had a hard time controlling our laughter. We later found out this action was called "spy hopping", which was essentially just to get a better look at us. When we finally made our way into the water, we could barely contain our excitement. The experience felt as natural as possible. For example, instead of holding onto their fins, we swam among our new friends were really able to appreciate their behaviors and interactions. Ready for the best part? There was a baby dolphin in the group! We were told to clap more than usual, in order to boost her self esteem :) We followed our instructor's lead, sending signals through our body language and praising them with fish. At one point, we made a certain hand motion and suddenly had two dolphins in our hands! I will never forgot those eyes: the kindness, warmth, and intensity behind their gaze. We were told to lean in for a kiss, and we were more than happy to oblige. If you wish to see the rest of the pictures from our encounter (there are 160!),  just click here. I honestly don't think we stopped smiling for the rest of the day.




We also visited two beautiful beaches - John's Smith's Bay and Horseshoe Bay Beach; the former being a secluded local favorite, and the latter being the most popular beach in Bermuda. At John Smith's Bay, we were one of maybe 10 people on the beach, and understood exactly why the locals loved it so much. The water was clean and crystal clear, and we loved lounging on the pale pink sand.  I even scooped some up into one of my pill bottles - a hiding spot that I thought was unlikely to be discovered in U.S. customs (I know, I'm such a rebel). I guess that's one perk of having to take medication!  Horseshoe Bay beach was (unsurprisingly) shaped like a horseshoe, and is famous for its caves and coves along the shoreline. The beach was packed when we visited, so although we didn't stay very long, it was an incredible sight.





I will honestly never forget this time with John. We're both beginning our final year of graduate school, and this adventure helped rejuvenate and prepare us for the year ahead. We've returned home as a stronger, happier, and more secure couple and I can't wait to start planning our next trip together!


Love,
Maya