Plagued With An Invisible Illness

I guess I lead a double life.

At first glance, I’m your typical urban young professional. I’ve got a corporate job in the financial industry and I wear heels and eyeliner every day. I attend meetings and write reports and I’m pretty darn efficient in Excel. I eat salads and go to yoga whenever I get a chance. Sometimes I go out for dinner after work. I fit the bill exactly.

But it’s all a show. The truth is that I’m constantly putting on a show. My computer bag rattles with pills in plastic cases. My back aches from holding myself upright for 9 hours a day. I have my doctor’s online portal open behind my Outlook emails. I’ll be sick in the bathroom and then sit down at my desk and put my headset back on. I get home from work and wake up 4 hours later still in my business casual clothes. I am barely holding it together for 40 hours a week.

I am plagued with an invisible illness. I was diagnosed with Lyme disease in June 2013 and have been coming to terms with it ever since. Diagnosis in and of itself was a journey that took many years and countless medical tests to discover, not to mention a few serendipitous interactions and moments of realization. Treatment has been physically and mentally arduous. I take over 40 pills every single day, sometimes upwards of 70 depending on the week. I’ve cut out gluten, lactose, caffeine, alcohol, salt, sugar, and sugar substitutes. My kitchen is filled with more pills and powders and liquid medications than and old-time apothecary. But even now, I can’t help but imagine the spirochetes swarming my veins and crawling up my spine. A war of epic microscopic proportions is being waged in every organ under my skin and I have no choice but to stand up and give another PowerPoint presentation.

I’m still a high-functioning member of society (because I’m one of the lucky ones) but I carry the burden of a secret lifestyle on my shoulders. I’ve spent years and years fixing my face to hide nausea, adjusting my shoulders to hide fatigue, teaching myself to focus on putting one foot in front of the other to walk through the day. Some people know that I have Lyme disease, but they have no idea what that means. They think it’s like malaria or rabies because I got it from a “bug bite.” They think I can just take a Centrum Silver instead of all of my supplements because “it has everything I should need.” They think I’m lazy or apathetic on the days when I feel like I’m trudging through mud because I at least had the energy to put on a dress and mascara that morning.

I’m not asking for help. In fact, feeling physically and mentally broken has driven me to prove my own strength to myself to the point of rejecting help. But I’m pleading for awareness: of how easily Lyme disease is contracted, of how difficult it can be to diagnose an invisible illness, and of the everyday battles of existence; of not merely surviving but living through it. Of the weight of keeping all of these secrets and lying about being okay and self-pressure to keep up in a world that won’t slow down for you.

Written by: Laura Myers

Laura Myers was was diagnosed with Lyme disease in June 2013 but unknowingly lived with related symptoms prior to that for an estimated ten years. She enjoys American literature, caring for her cactus, and teaching her old dog new tricks.

Meet Ashley Lewis: Incoming President of Lori’s Hands

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Ashley pictured on right with new volunteers.

I remember the day I received my acceptance letter to the University of Delaware’s Nursing program. Just like any other high school senior, I was anxious to move into my new dorm, excited to meet lots of new people and I really wondered if college courses were really 10X harder than high school, like my teachers told me they would be. While some of my classes were a lot harder than others, I felt that I was able to learn a lot and take away from each of them. Looking back, I can truly say that I would not have been able to predict that I would become the person that I am today…and much of my self-discovery came through my experience as a member of Lori’s Hands.

I first joined this great organization during my sophomore year as a way to earn community service hours. I really appreciated the up-close-and-personal experience that Lori’s Hands allows its volunteers to have with older adults that are living with chronic illnesses. After my first few visits to a client named Jean, I developed a keen interest in geriatrics and was sure I wanted to work with older adults in my future career. The stories she shared with me about her life before she experienced a stroke were so full of joy and happiness. It was very apparent to me that the unexpected stroke changed her life in ways that she couldn’t ever imagine. In her younger years, she worked as an elementary school teacher, which required lots of energy and enthusiasm for life. She also enjoyed gardening but now she is only able to manage a few potted plants that she often asks me to trim and water. It was the small chores that I could complete in 5 minutes that would probably take her an hour due to her disabled gait and limited range of motion that made me realize how difficult life can become for those suffering from a chronic illness.

A lot of older adults do not have assistance around the home and the fact that Lori’s Hands gives students the opportunity to learn about chronic illnesses while also making a difference in the lives of its clients has become the driving force behind my passion for the organization. Last year, I began to lose interest in clinical nursing and thought of ways in which I could have a larger impact in the field of healthcare delivery and administration. I took a great leap of faith and switched my major to Public Policy with a health-oriented focus. Ultimately, I aspire to help create efficient and inclusive health policies for all people and ensure that our ever-increasing older adult population is not overlooked.

I am both proud and honored to have been elected as the 2014-2015 President of Lori’s Hands. For this upcoming school year, I am looking forward to working alongside our other amazing officers and volunteers to continue to grow the organization and provide everyone involved with a fulfilling experience. I am also striving to build a greater sense of community among our volunteers and organize a few events that are open to the entire Newark community. I am thankful to Lori’s Hands for aiding me in my growth as a person, as I have learned a lot about myself through helping others. It has been a rewarding experience thus far and I am excited to help the organization expand and move forward. Onward!

Written by: Ashley Lewis

A Mother’s Love

Imagine this: me, an innocent toddler, walking clumsily around our den, my mother’s outstretched hands ready to catch me if I fell.

Imagine this: me, six years old, racing ahead, thinking she was holding onto my bike. She wasn’t. Yet I didn’t fall.

Imagine this: me, twelve-years-old, sitting on the back porch, the hot wood burning the back of my thighs, hearing my mother tell me she has cancer.

Imagine this: still twelve, my mother’s head bald as a cue ball, but she’s gripping my hand as the surgeon wheels me back to the O.R. Me, having cancer. My mother, recovering from her last chemotherapy, sleeping in a hospital chair next to me all night.

A mother’s love knows no bounds. That’s what I’ve always heard. That’s what I’ve always felt, when she’s smoothed my hair or patted my back or kissed my cheek. It’s there, in the way she speaks to me, softly yet sternly, shaping me into the woman she knows I can be.

My mother was raised to be independent yet humble—not needing any help, but also not being afraid to ask for it anyway. She put this to use when the doctor told her that her own body had turned against her—she had breast cancer, and she’d need chemotherapy to save her life. She put on a brave face, not letting us see how scared she was, and she lived.

And just when she thought her nightmare was over—just when she’d stop fighting for her life—she found out that I’d be fighting for mine.

I was twelve, slowly merging into teenagehood, when all I should’ve been worried about was algebra and training bras. The doctors told me I was so brave and so strong. They told me I had Langerhans Cell Histiocytosis, a rare blood disease where the white blood cells attack the bone, but I was so brave and so strong. I’d be fine. One surgery on my skull to scrape the bad cells out, and I’d be done.

But then, a year later, at the ripe age of thirteen, a full teenager, I was back for a second round of surgery, and a more pressing worry. Chemotherapy was in the talks. My mother held her breath when they mentioned this. I breathed for her.

The first day of her chemotherapy, I cried. The first day of mine, I didn’t.

Four years flew by in a blur of butterfly needles and the same old question: how are you feeling today? For every appointment, for every treatment, every scan, every emergency room visit, she was there, smoothing my hair or patting mu back or kissing my cheek. She knew what it was like to be at the brink of death, and she wasn’t going to let me feel that fear alone. She knew she had raised me to be strong and brave, to not need help, but she helped me anyways, because that’s a mother’s love.

I probably would have died without the chemotherapy. But I definitely would have died without her there next to me. No one really values the caregivers they have in their life until they’re in desperate need of that care.

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Written by: Hannah Gordon

Hannah Gordon is a junior at the University of Michigan studying Communications and Creative Writing. She currently resides in Ann Arbor, where she spends most days drinking lots of coffee and writing for Thought Catalog, Listicle, and What the F Magazine. To read more of her pieces, visit http://thoughtcatalog.com/hannah-gordon/.

An Interview with Katie Den Ouden

After reading an awesome interview on Verily featuring Katie Den Ouden, we knew that we had to reach out to her! Lori’s Hands had the privilege of interviewing Katie as she told us about her life, her work and her mother’s battle with multiple sclerosis. Katie’s interview below offers invaluable insight and we are so thankful to have had the opportunity to speak with her! For more information visit: http://katiedenouden.com/.

LH: Tell us about yourself and your work!

KDO: At 19, I was studying abroad and got a phone call that changed my life. My older brother and I had been the sole caretakers of my mother, who has multiple sclerosis. He called to tell me that our mom had gotten an infection and was in the ICU with a very small chance of living. I couldn’t do anything from abroad. Up until then, I thankfully never struggled with food or my body image, but in a matter of days I started using food to feel in control of my life. A downward spiral happened: depression, an eating disorder, losing then gaining thirty pounds in a year, hormonal imbalance, and isolation. I had felt tremendous amounts of guilt, shame, loneliness, and perfectionism. I felt hopeless with my body and in my life, like I was simply existing.

It was my journey of coming out of this stuck and simply “existing” place that unleashed my customizable road map, not a blanket approach, which women can use to find freedom AND uncover what their body, soul, and life needs – regardless of the health and stress of those around them. This roadmap includes the exact tools, adventures, mindset shifts to help women get unstuck at any point for the rest of their lives so they can be wild.free.alive. AND FULLY give back to the world and loved ones.

Bottom line – I help women come ALIVE and truly live and love their lives by unleashing the wild. free. alive. core of who they really are. It’s my passion, purpose, and one piece of huge joy in my life.

Why? Because women who are fully alive, loving life, and in-tune with themselves create a ripple effect of contagious joy, living on purpose, and absolutely stunning beauty & abundance. Selfishly, I want to live in that world. J But, I want you there with me, too.

LH: Have you ever worked with women who have chronic illnesses? How does or would that impact your recommendations or tools for success?

KDO: Aside from my mother who has had MS for my entire life, I’ve worked with numerous women who have autoimmune diseases, thyroid issues, endometriosis, IBS, infertility, cancer survivors, and more. And while I no longer offer 1-on-1 nutrition coaching as it was too intense after caretaking for my mother for so long, it actually gave me an incredible foundation of insight and tools necessary to support and make true lifestyle changes (long haul baby) not just for a couple weeks or months.

Chronic illness, stress and emotional turmoil can wreck havoc on our bodies, emotions, relationships, purpose, and ultimately happiness. Without addressing ALL of these areas, we never really feel better. Once I started to boost the support, insight, tools, and understanding around the mindset…women started to have extreme self-care, sense of control, reduction in pain, and honestly sheer joy in their lives. I learned to we have to focus just as much, if not more, on our SOUL food as we do food food. J

LH: You have shared with us that your mom has MS. What is it like supporting a parent with a chronic illness?

KDO: I’d love to say it’s a joy and easy, but it’s not. It’s hard as hell. There are days of optimism and laughter and days of straight up fear, unknown, guilt, sadness, loneliness, and helplessness. Over the years I’ve garnered more insight, been in the rodeo a little longer, and know more of what to expect…but I wrote an article that chronicled a specific incidence and need for self-care and shift in perspective here: http://katiedenouden.com/blog/the-art-of-holiday-self-care-i-e-grinch-prevention-plan

LH: What have you learned from your mom’s battle with MS?

KDO: I could probably share hundreds, but the main one’s that come to mind at this point in my journey are these:

  1. Self-care: This is crucial. Just as much for the person with chronic illness as it is for the caretakers and those surrounding them. Often times it’s those who are so busy taking care of others, worrying about others needs/perceptions, and letting the stress build within who experience chronic illnesses. If we allow self-care to be a priority instead of attempting to prove our worth through what we take on, accomplish, or say yes to…we allow ourselves to be awake and in full-service (not ½ asleep) in our lives.
  2. Live in the moment: we never know when life may end. Living in what ifs, shoulds, regrets, fears, etc., keep us from ever truly living life, loving fully, and giving back to the world. Experiencing my mother’s decline of living and the prospect of death from such a young age has given me an incredible appreciation for truly living, taking ownership of how I experience my life, and finding the joy in every day moments… I call it taking the ordinary to extraordinary.
  3. Design vs. Default: we can’t always choose what will happen in our lives but we can always choose how we respond and perceive. This in and of itself gives us the freedom to design our lives and our direct experience.

LH: We meet lots of resilient people through Lori’s Hands who have turned their challenges into triumphs/successes. Do you feel that your current work and happiness are in part due to trials you faced earlier in your life? How have you turned your own “darkness” into “light”?

KDO: Without a doubt, yes. Most of the people I truly admire who are doing incredible work in the world have been through some deeply hard and trying times. It’s in these moments we get a choice – default into despair or choose to stand and change the world. For a time in my past I choose despair and when I could no longer sit in it, I choose to rise up, take a stand, and design a new path…leading to my purpose to show the way for others to come out of that place of feeling controlled, depressed, guilty, lonely, dark, and disillusioned and CHOOSE joy, freedom, bravery, happiness to truly come ALIVE.

It’s taking radical responsibilities for our own lives so that we can share contagious joy (and support) for everyone we encounter.

LH: Many of our readers are current college students or recent graduates. What advice do you have for young people who want to be healthy during chaotic, transitional periods in their lives?

KDO: Create basic non-negotiables. What are the absolute 3-5 things you must have in order to be grounded, nourished, and awake in your life? For me… I need 8 hours of sleep, the right foods for MY body, tons of water, intellectual/spiritual stimulation, and a morning and bedtime routine/ritual (includes meditation and gratitude practice). I do not budge on these or try to negotiate. With these basic pieces, I feel grounded, at peace, and fully able to be myself in the world – in chaotic times AND in support my mother and her needs. Don’t be afraid to be selfish in your self-care. There is no shame or guilt in putting your own oxygen mask on first SO THAT you can fully be of service to others. If you don’t…you’ll crash and burn and be of no service to anyone.

More on Katie’s journey:

I love to give this visual: Think back to a time (or now) where you felt fully in the moment, giddy with excitement and adventure, not a care in the world about your body, food, career, or in this case health of a loved one…but rather killer confidence and contagious joy. Connected. You weren’t held back. You weren’t stuck. You weren’t confused. You weren’t weighed down. You were happy. wild. brave. free. ALIVE.

Got that moment?

Now surround yourself in that moment with thousands of other women cheering you on (go ahead, picture it), seeking together the great life, and celebrating your awesomeness (no comparison, no competing). Feels pretty amazing, right?

A lot of women try treadmills, cleansing and discipline to get to this feeling and “place”… and feel something is wrong with themselves when they can’t stick to it or frustrated when they do get “there” and still aren’t happy and FREE. I found for myself that when I started to uncover who I really am, unleashed my desires, owned my worth and beauty, treated my body fabulously, and lived the way I thought I would live when I got “there” (instead of waiting on the weight, perfect health of a family member, career, man, permission, etc.)…THEN I started shedding excess weight (body + soul), being well-fed (food + soul), and feeling free and ALIVE.

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The Daughter of a Fighter

When my mother died I was only eight. For a while, my life was a blur and I really didn’t know what to do. I was numb, and did not know how to function without the love of my nurturing mother.

It’s almost nine years later, and I still feel desolate. Now that I’m maturing, it’s almost hitting me harder than before. I am competing for colleges, taking rigorous classes, and I’m now realizing how much my mom’s death impacted my personality and the drive that I have today.

My high school experience has not been the best. I was a slacker freshman and sophomore year. I became determined that junior year would be different. I have kept my grades up and become focused on getting myself accepted into a college of choice. Seeing my mom battle MS and then cancer taught me that we are stronger than we think. I want to honor her memory, and make her proud.

I have many memories of me and my mom hanging out and being fools together. I remember one warm summer day, when we were at my brother’s little league game. My mom was very involved in our community, and that day she was working the concession stand. During the game, it began to massively storm outside. I remember as it began to pelt hail, my mom ushering me and my brother into the stand, and the three of us huddling inside the little shack together. I’m so thankful to have memories of her comfort, her strength, and her sense of humor.

Just as she had cared for us, we had the responsibility of taking care of her once she got really sick. Every day I would come home from school and take care of my dying mother. I’d help with her personal care, adjust her if she was uncomfortable, and make her as happy as she could be. My grandmother and my dad had the brunt of the caregiving responsibility, but my brother and I still attempted to help however we could. I like to think that the experience changed me, and that I’ve carried a piece of that sense of responsibility with me from a young age.

Just as we worked in those last months of her life to do everything in our power to bring her comfort, I live today with her always in the front of my mind – trying to shape a life she would be proud of, and that I can be proud of too.

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Written by: Erin Whitten

Erin Whitten is currently a junior in high school from Revere, Massachusetts. She has a strong passion for writing and is a blogger for Huffington Post! We were so happy that she shared her story with the Lori’s Hands community. To read another one of Erin’s pieces, please visit http://www.huffingtonpost.com/erin-whitten/losing-a-parent_b_5446293.html.

An Interview with Alexandra Zaslow

We’ve been lucky enough to interview Alexandra Zaslow as our next guest blog writer! A few months ago, our founder Sarah read a piece that Alexandra had written titled “A Letter To ‘The Boss.’” This piece was a letter written to Bruce Springsteen about how his music had been Alexandra’s father’s favorite and how it provided her comfort when he passed away. The letter resonated with Sarah, as she had a similar experience with Billy Joel’s music when her mother passed away. We tracked down Alexandra and knew that she had to share her insight with all of our readers… and we are so happy we did. Once you read — you’ll know why!

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LH: What have people done that has been most supportive for you as you have grieved the loss of your father?

AZ: Lending a shoulder to cry on. Sometimes literally, but it’s best when it’s through their actions. During the days that followed the death of my father, our house was filled with people offering their shoulders. Everyone from my preschool teacher to my dad’s Wall Street Journal editor to the woman my family stood behind the week before at our local deli. They were all there and we appreciated them.

Since then, we’ve been incredibly lucky to be surrounded by our community, family and friends who have all expressed generosity in different ways. My Uncle Randy flew to my college graduation in Indiana because he wanted to be there for me during that hard time. My extended family and close friends put a smile on my face every time they reminisce on the fond memories they had with my dad. Even strangers who continue to read his books provide me with a distant, yet comfortable, shoulder to cry on. All of these people have contributed to carrying out my dad’s legacy and that’s the kind of support I don’t take for granted.

LH: What would you share with other young people grieving the loss of a parent?

AZ: Time is your best friend. It’s hard to see that in the early stages of the grieving process, and I had trouble believing it at first, but it’s been a little over two years now and I’m blown away by the progress I’ve made. I questioned whether or not I could ever be happy again, but I’ve had some of the best times of my life over the past two years.

The best advice I can give is to stay close to family. It’s comforting to be surrounded by people who are going through it with you. It will lift your spirits knowing you’re there for your loved ones when they need you most. Also, try to keep busy. It’s a temporary form of medicine, but I promise it works.

LH: Your dad was a successful writer. Did it affect your family’s grief experience that he was in the public eye?

AZ: My family received a great deal of support not only from our friends and community, but also from my dad’s fans. We always knew how special he was, but to hear the impact he had on hundreds of thousands of readers was the most inspiring thing to have come out of such a tragedy.

LH: Your dad co-wrote Randy Pausch’s “The Last Lecture.” What did he share with you and your family about what he had taken away from that project?

AZ: Time is precious and you never know how long you get. Randy inspired my dad to go out and celebrate life. He would interview Randy by phone every day and during one of their calls, Randy was going through a self-checkout line at the grocery store when he noticed they had charged him twice. My dad asked him if he wanted to deal with getting his money and then call my dad back. Randy said he wanted to keep talking and that he’d rather have 15 minutes than $16.55.

At the end of their calls, Randy would sign off telling my dad to go hug his kids. And, of course, he always listened.

LH: Bob Greene wrote about your dad’s initial interest in Randy’s lecture, and how he believed it was something special before other people did. What can we learn from your dad about listening to our gut feelings and pursuing things we think are important?

AZ: My dad’s middle name might as well have been spontaneous. He was always up for an adventure and knew a good story when he saw one. When he found out about Randy’s lecture, he knew it was going to be a story worth telling. It wasn’t the first time my dad followed his heart, either. He’d travel long distances and call people 20 times before they’d hear him out. Sure enough, they’d all have features written about them in the Wall Street Journal and some even had New York Times bestselling books dedicated to their stories.

Greene ends his article summing up my dad’s own story, “And when the day finally comes when you have your big success, when you get your big break, it won’t be because you made the extra effort once. It will be because you made the extra effort every time.”

LH: Has your experience of loss changed your writing and career interests?

AZ: Definitely. I feel for people in a way that I wasn’t able to before. It opened my eyes to the struggles others go through, which in return, led me to finding out about their triumphs. I felt an urge to share these stories, in the same way you guys are sharing my story. When you feel a connection to the story, it’s easier to make it come from the heart.

I also have a strong desire to carry out the legacy of my father. He had so many more stories that he didn’t get a chance to tell. It’s my job to make sure I get to tell those stories. I even find myself implementing his writing style in some of my pieces and not even realizing it. But when I do, I smile.

LH: You’ve written extensively about people who turned tragedy into something positive. What story stuck with you the most?

AZ: Back in November, I wrote about a woman named Jessie Kuehl who wasn’t able to visit her father’s grave on the 40th anniversary of his death. She posted an ad online, hoping to hear back from a couple sympathetic people in the area who would go to her dad’s grave to tell him she missed him. She ended up hearing back from tons of people saying they’d be happy to visit on her behalf.

After my lengthy phone call with Jessie, we hung up and became Facebook friends so that we could keep in touch. I sure am glad we did because a few weeks later, she contacted me and said that a man in California read my article and offered to fly Jessie out to visit the grave herself.

I’m so thrilled that my words had that kind of impact on someone’s life. That’s the beauty of journalism.

LH: Your dad’s book “The Magic Room” shares intimate stories of brides-to-be. What did your dad teach you about love and marriage?

My dad loved love. He treated my sisters and me the way he expected our future husbands to treat us. It’s the endless love he gave us that taught us what to look for in someone we want to spend the rest of our lives with.

He also taught us by example. My parents’ love and respect for each other was so evident. I’m going to make sure I share that same love and respect with my future husband.

My dad turned his passion for love into “The Magic Room” and I feel so lucky to have been able to hear the remarkable stories over the dinner table as he was working on the book.

LH: A lot of our readers are college students. Do you think that young people have the power to make a difference? What advice do you have for our graduating seniors?

AZ: Absolutely! It’s the young ones who are dominating the working world. We have more power now than we’ve ever had in the past and it’s up to us to take advantage of it.

To those college graduates, go out there and do what you love. If you can make a living doing it, more power to you!

Thank you Alexandra for sharing taking the time to answer our questions with such thoughtful answers! We truly appreciate it. To learn more about Alexandra, please visit her blog at http://alexandrazaslowblog.wordpress.com/

Click here to donate!


Lori’s Hands is ready to grow beyond the UD campus! We have launched our first Indiegogo campaign to help us expand. The $50,000 raised through this campaign will allow us to hire our first paid staff person who will support students and faculty at other campuses who want to start chapters.We have received dozens of calls and emails from people who want help founding Lori’s Hands at their schools. We want to offer our streamlined processes and years of experience to these eager individuals so that their chapters can be successful. One full-time staff person could support fifteen or more chapters, enabling Lori’s Hands to reach hundreds of patients who need support, instead of dozens, and to impact thousands of students instead of hundreds.

Please help us by sharing our campaign or making a donation today!!

Juvenile Rheumatoid Arthritis: An interview with UD student, Morgan Wiener

Lori’s Hands was fortunate enough to interview University of Delaware student, Morgan Wiener. Morgan is a senior at the university with majors in Mass Communication and Media Studies. She is from Short Hills, New Jersey and shared her experiences about being diagnosed with arthritis early in life.

Lori’s Hands: What do you remember about being diagnosed?

Morgan Wiener: I don’t remember much since I was young but my parents one day noticed my ankle was swollen. They originally thought I had a hairline fracture but when it didn’t get better, they realized it was something more. I went through a series of tests. At one point the doctors thought it was Lyme disease but blood work ruled that out. They eventually diagnosed me with Juvenile Rheumatoid Arthritis.

LH: How old were you when you were diagnosed?

MW: I was 5 years old.Morgan

 

LH: What have been your experiences like with doctors and nurses? How frequently do you have to see a doctor because of it?

MW: I live in New Jersey and when I was younger my doctor was located an hour from my house in Hackensack. She then relocated to a hospital in the Bronx so it became more of a hassle to get to. She was great and a really a well-known specialist, but when I got older she passed me off to another doctor. At the time I was a little upset because I had been seeing her since my diagnosis. However, the other two doctors I’ve had since then have been good too. I only go twice a year and they usually have me in and out.

LH: What is one thing about your life that is different because of your diagnosis?

MW: I grew up very differently from my siblings and friends because I was not able to be as active and fit at times. There were times when the pain was so bad, I couldn’t fully straighten my leg and I’d be limping around. This would mean that I had to miss a lot of school and gym classes usually. Growing up, I’ve also had to get my eyes checked every few months because if I developed arthritis in my eyes and it went untreated, I could go blind. In addition, I have to get blood work and x-rays done every year.

LH: What would you tell a new Juvenile Rheumatoid Arthritis patient?

MW: I would express how hard it can get because of the different lifestyle. You can’t be as active as other kids and you have to see doctors constantly. However, I remind myself that there are so many worse health conditions and while there is no cure for JRA, you can still treat it and live a normal life.

LH: Does arthritis run in your family?

MW: None of my family has ever had JRA. My grandparents have arthritis but from old age.

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Morgan was able to learn to live with her arthritis as a child.

LH: What do you do to treat or manage your arthritis?

MW: When I was little, I used to get my knees and ankles drained and had a steroid put in. I actually got put under anesthesia for the first few times but as I got older I didn’t need to. That worked for a while but then I would have less and less months of feeling no joint pain and swelling. At times, I would go months feeling completely fine and my doctors said I might outgrow JRA with puberty. Unfortunately, that didn’t happen.

Eventually I went on medicine. At first it was by pill, which worked well for several years. The pill was called Methotrexate. Methotrexate treats several kinds of cancer, including bone, lung, breast, head, neck and cancer of the blood. It also treats rheumatoid arthritis. Then the doctors took me off of it and I was symptom free for a few years and needed no medication. When my symptoms returned, the Methotrexate no longer worked and the doctor started me on Enbrel. I administer it to myself in the form of a shot once a week. I have been on it now for three years and it works great. Sometimes I am bad with taking the shot on time so my joints will start to ache and swell but as soon as I administer the shot, I feel a lot better again.

What Taking Care of My Mom Until The Day She Died Taught Me

“I’m sh**t*ng in my diaper!” my mom yelled out to me. She was going through a period of uncontrollable bowels due to her many medications. Mommy needed my help and I did what I had to do.

Taking care of a parent is inevitable. It’s essentially the cycle of life: They take care of you for 18 plus years, and in return, you take care of them as they approach old age. This was something I always anticipated. Except, I envisioned my caregiving happening as if ripped right from the movies. I would be married with a couple kids, thriving career, hot husband, and a big home with extra rooms to keep an eye on the parental unit. Alas, life never ever (ever, ever) happens as you plan.

Mom’s ailments began around 2006 – my junior year of high school. Mama had slipped down the stairs and everything bad that had been brewing in her body came to the surface. She was fine right after she fell, but as months went by, it was clear that she wasn’t okay. It was like the fall was the spark that started the fire in her body that would eventually take her life 7 years later.

Dara and her mother.

Dara and her mother.

We learned that she had Rheumatoid arthritis, also known as, RA. It’s essentially a long-term disease that leads to inflammation of the joints and surrounding tissues. It can also affect other organs. I describe it to others as your body attacking itself because it’s an autoimmune disease. Mom was in constant pain from the inflammation. It was hard to watch because there was nothing I could physically do to help. She was in so much agony all day, everyday that I couldn’t do anything but help her take the pain meds and create a hot or cold compress to relieve the pain.

Eventually, the disease got to her major joints and resulted in a lot of replacements. Hip, knee, foot, hand… Name it, she got it. Mobility became very difficult. Mom was in and out of the hospital and in nursing homes recovering so often that her illness became a normal part of my life. Her missing my major life events like senior prom, college graduation, and my engagement party (JK. That didn’t happen. Still single, guys.) was no big deal. It was life.

In high school, I often woke up in the middle of the night to help her use the bathroom. Then began my routine of me showering her every so often. And when I came home from college, it wasn’t to go out and catch-up with high school friends at the latest rager. It was to relieve my brother and father from their mommy duties.

It can be trapping, having to take care of a sick parent. Especially one that basically needs around the clock care. You feel like you can’t leave the house…ever. I didn’t have weekends for a very long time. I never went to a single brunch because I had to stay home while my brother and dad went to work. I began to resent my mom’s sickness but never her. She didn’t choose to become that ill. But home was never an oasis of peace. It was a place of constant worry and work. My mother never seemed to be getting better. It was either the same or worse.

Ultimately, I learned the true meaning of love and patience from my mother’s situation. When she could no longer walk and had limited movement with her arms, she moved at a slug’s pace. Helping her to use the bedpan or get comfortable in bed required gingerly actions. And after having to clean her up multiple times from accidents, like shitting in her diaper, you appreciate life a little more and learn to love a little more.

Written by: Dara Adeeyo

Dara Adeeyo is a freelance writer and we are honored to have her as a guest blogger. Dara has been published on Thought Catalog and Cosmopolitan Magazine. Check out her website here to read more about her and her work!

Where Are We Headed Next?

This has been the big question. My answer has been: “Where are we not headed?” Everything is coming at us full force and we are loving every second of it! Whether we are being retweeted by Jodi Picoult, featured in an amazing seven minute mini-documentary, or talking to other schools about bringing them a Lori’s Hands chapter, Lori’s Hands has been doing big things.

Jodi Picoult retweeted us!

Jodi Picoult retweeted us!

However, a sneak peak into the next few weeks is looking even better than what’s already going on: On March 21st, Liz and I head off to Arizona to attend the Clinton Global Initiative University conference. The conference is held at Arizona State, beginning Friday and ending Sunday. We will be participating in all things awesome, such as listening to amazing guest speakers, on whom we are still waiting to be announced. Last year, the conference featured President Obama, Stephen Colbert, and Jada Pinkett Smith, just to name a few. Liz and I plan on telling Bill and Chelsea Clinton all about Lori’s Hands (and maybe snapping a few selfies while we are at it). Aside from networking with some of the most amazing students in the world and getting advice from some of the most fantastic people, our weekend ends with a service project! We will spend Sunday working beside the Clinton’s and fellow CGI U participants… should be awesome.

While Liz and I are in Arizona – everyone else will be participating in Mom Prom! Mom Prom takes place on March 21st and it is an event hosted by The Real Charitable Housewives of Delaware and East Pennsylvania. It is a night of dancing, dressing up, raffles, drinks, food and fun. The money from this year’s Mom Prom is benefitting our own Lori’s Hands and UD’s B+ Foundation! We are so excited and so thankful the RCHD has decided to include us.

As for the month of April, our founder, Sarah, will be heading to Chicago! She was invited to attend the Community Campus Partnerships for Health Conference where she will be making sure everyone is aware of Lori’s Hands!

If you haven’t already seen our latest video, please make sure to check it out here. Share it with the whole world! We can’t wait to update you all about how the aforementioned events turn out. Make sure to keep up with our Facebook and Twitter for live updates!

Once again, this is just the beginning. We hope you take a ride on this amazing journey with us. Get involved!

 

Written by: Alexa Rivadeneira