5 Things I’ve Learned Since My Daughter’s Juvenile Arthritis Diagnosis

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When my daughter was 18 months old, she became anemic and began having difficulty putting weight on her legs. She lost her appetite, she stopped growing, some of her joints were swollen and she fought off countless illnesses on top of having asthma. After a year and a half of doctors, tests, scans and blood work, she was diagnosed with juvenile idiopathic arthritis (JIA).

While we were relieved to finally have some answers, we also found ourselves overwhelmed with the diagnosis as well as trying to find the right dosage and combination of medication to fight this autoimmune disease. We are several years into it now, and every day is different. I feel it’s important to raise awareness for JIA, an “almost invisible illness” because the swelling usually occurs in the morning and at night. Not being able to see it makes it difficult for some to understand.

I’d like to help others who are going through similar journeys, so here’s what I’ve learned so far:

1. Live each moment. This is so much easier said than done, especially when my daughter is sick or going through a flare. There are times when she’s in so much pain she won’t even let me touch her. But there are also times I get to scoop her up and snuggle, and I savor those moments dearly. No feat for us is too small. I am grateful when she can just get out of bed by herself or play with her sister. People sometimes take these “small” things for granted, but we’ve learned to live each and every moment and be thankful for them all. A lot of people wonder if it’s something she will “grow out of,” and unfortunately that’s not the case. So we take each day at a time.   

2. Your priorities will change. Unfortunately, with an autoimmune disease, your immune system is low. Whenever we go out somewhere, she gets sick afterward almost every single time, even after taking precautions and getting clean clothes on immediately after we get home. And while most people can fight off an illness in three to five days, it takes her two weeks. So we’ve begun to change our priorities and how we think. For example, would we rather have her go grocery shopping with us, or save the outing for something she’ll actually enjoy?

3. You learn who your true friends are. With this disease, every day is different. Some mornings, she springs out of bed; other mornings, it takes her two hours. We sometimes have to cancel plans because of a flare. Some friends will understand these things, and some will not. You may even get the occasional comment along the lines of, “Your child always seems sick.” Another one we get a lot is, “But she looks fine right now.” It’s difficult to explain to someone without going into details. Yes, she may look fine right now, but it took an hour with the heating pad this morning just to get the swelling down enough for her to get out of bed, and there will be at least another hour tonight along with her crying because she’s in so much pain. Your real friends will listen to you when you explain these things and will understand when they come up.

4. It is an emotional roller coaster. Another mother whose child has JIA shared this with me when my daughter was first diagnosed. At the time, I didn’t understand it at all. I thought we had everything figured out with her meds and we were good to go. But boy, was she right! Just when you think you have it all figured out and things are going smoothly, new joints become affected, others stop responding to the medication or something else changes.

You’d think with every flare it would get easier, but it doesn’t. You go through all the emotions all over again — worry, anger, guilt — and that’s OK. Surround yourself with a good support system. If you want your child to learn how to express his or her feelings, don’t be afraid to show yours sometimes. It’s important they know it is OK to have feelings — it’s how you deal with and handle those feelings that matters.

5. This illness does not define us, but it does help shape us — whether we want it to or not. This is a big one. My other daughter has shown me this the most. At times, she feels guilty for getting to do things that her sister cannot. I struggle with this as an adult, but I can’t image how hard it would be to do as a child. But, with help from out support system, we’ve both grown so much. She shows empathy beyond her years and is always trying to help others. She has learned to include, accept and have patience. I’ve learned to have courage and to take each day at a time. I used to plan everything, be inflexible or ask “what if.” Not anymore. I enjoy the small victories and savor them for as long as I can.

As the years go on, I’m sure we’ll continue learning. In the meantime, I hope this can help some new families who may be going through a similar journey. I am so proud of both my girls and am so thankful for our constant support system through all of the ups and downs.

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The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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Johnson & Johnson Pulls Ads Following ‘The View’ Hosts’ Nursing Comments

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1507529_10151975024165951_3244925699037461320_o On Wednesday, Johnson & Johnson announced the company will be pausing its ads on “The View” following the daytime show’s co-hosts’ comments regarding Miss Colorado’s decision to discuss her nursing career as her talent in The Miss America Pageant.

In a statement on Facebook, Johnson & Johnson wrote:

Johnson & Johnson values and appreciates nurses and we respect the critical role they play in our healthcare system. We disagree with recent comments on daytime television about the nursing profession, and we have paused our advertising accordingly. We’re committed to raising the level of awareness about the skill and knowledge that the profession requires, and we send our thanks today and every day to the millions of nurses who touch the lives of patients and their families. #NursesHeal#NursesUnite

After “The View” co-hosts Joy Behar and Michelle Collins seemingly mocked contestant Kelley Johnson, who works with Alzheimer’s patients — even going as far as to question why Johnson wore a “doctor’s stethoscope.” Fellow nurses, patients, doctors and people from all over jumped to Johnson’s defense. Doctors like Mark Stanley posted photos of themselves draped in stethoscopes, making the point that nurses, too, use the medical device. Several parents spoke out, writing blog posts explaining to Behar and Collins just how valuable nurses are.

On Thursday, Johnson & Johnson also announced that the company will be putting the money saved from pausing its ads to good use:

For every eligible photo you post through our Donate A Photo app designating the Foundation of the National Student Nurses Association (FNSNA), Johnson & Johnson will donate $1 to provide scholarships for nursing students, up to $50,000. You can share one photo a day through the end of the year, so keep your photos coming!‪#‎nursesunite‬

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Model With Vitiligo Surprises 10-Year-Old Fan Who Has the Same Condition

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Winnie Harlow could be a role model for anyone who needs a lesson in confidence, but for 10-year-old April Star, she’s a particularly special influence.

Harlow and April both have a skin condition called vitiligo. Despite facing horrible bullying in high school, Harlow went on to find international modeling success and most recently appeared on the cover of Ebony magazine’s September issue.

On Thursday’s episode of “The Real,” April, an aspiring model, told the show’s co-hosts that the most confident person she knows on Instagram is Harlow. April keeps her own Instagram account called “redefinemybeauty,” where she shares photos of herself to inspire others to embrace their differences. Co-host Jeannie Mai then calls Harlow on speakerphone, but it turns out the superstar is actually backstage.

Below you can watch the tearjerking exchange that then ensued between Harlow and April.

“The confidence I have now, I had none of at her age,” Harlow says in the clip. “So when I see her all over the Internet and social media, I see the little girl that I wish I could have been.”

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The Reality of a Daughter Whose 61-Year-Old Mother Lives With Alzheimer’s

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I used to think I knew about Alzheimer’s disease. I thought it was a disease that strikes the elderly, a disease that may cause people to forget their names or their family members.

I saw “The Notebook.” I knew what Alzheimer’s was…

Until my mother started to display a number of worrying signs from around age 55. She started to forget basic instructions and denied knowing about certain functions at church or my dad’s work. That’s when I started to understand that what I thought was Alzheimer’s was just the tip of a large iceberg.

Denial was the first part of our reality. And it lasted close to five years. “It’s not Alzheimer’s!” we would say.

“It’s just normal aging and forgetfulness.”

“She’s much better today.”

“She still knows all our names.”

“She knows she forgets things; with Alzheimer’s ‘they’ don’t have a clue.”

Five years of bluffing, denial and trying to appear as normal as possible to the outside world. Few people had any clue about the daily struggles and worries. About trying to convince the world our mom was fine.

Until we couldn’t deny the reality of Alzheimer’s disease any longer…

When a lady who prides herself on her cooking can’t throw two ingredients together, or when a lady who could socialize with any person suddenly can’t string together two words with a friend — then you know things are not as fine as you want them to appear.

She received the dreaded diagnosis: early onset Alzheimer’s disease. Most likely familial. Another reality hit me then — I could carry the dreaded gene as well. Someday that could be my sisters or me.

Every day has its challenges. Days when Mom can’t remember her own children’s or husband’s names, or can’t dress herself at all.

And then she has other days where she seems like her “old” self, which is yet another reality of Alzheimer’s disease for us. You find yourself inadvertently comparing your loved one to the one you used to know. The “perfect” mom of old. “She’s still perfect,” you convince yourself, but in the darkest, most difficult moments, you cry out for the mom you used to know. The mom who could heal all ills and take away all woes.

Another reality is that she can become aggressive or afraid (or terrified). She can be fine one moment and paranoid the next. We haven’t had any major incidences of aggression or paranoia, but the signs are there. I believe it’s only a matter of time.

And even though you know you shouldn’t take things personally, even though you know she has no control over her reactions to you or her grandchildren, in your darkest moments you blame her. You blame her for hurting you, not physically, but emotionally (which I feel can be so much worse). You blame her for forgetting your name or for keeping you at a distance. It’s the disease’s fault. But at your worst, it seems so much easier to blame the person than an invisible disease. Blaming a sick person — that can be a reality of Alzheimer’s.

But beyond the forgetfulness, aggression and paranoia that starts to develop…

Beyond the odd behaviors and mood swings…

She is still just “Mom.”

She’s not a neurological condition. She’s not imperfect or broken. She is a mother and wife, a grandmother and rock. She is Mom, and we will always love her.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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Photos Capture How Dad With Dwarfism and 4-Year-Old Daughter Help Each Other

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Richard Willis, from Yorkshire, England, is just a few inches taller than his 4-year-old daughter, Cherry.

Dwarf and daughter
PIC BY SIMON KENCH/ CATERS NEWS

Willis, 46, has diastrophic dwarfism, a disorder of cartilage and bone development that results in short stature, arms and legs, as well as early-onset joint pain and joint deformities, according to Genetics Home Reference. Because of the arthritis and scoliosis caused by his condition, Willis had to take a medical retirement from his job as the Head of Transport for the city of York in 2006, Caters News reported. He now uses a specialized wheelchair and spends his days taking care of Cherry while his wife Charli is at work.

Because they spend so much time together, Cherry and Willis have formed a special bond.

Dwarf and daughter
PIC BY SIMON KENCH/ CATERS NEWS

Cherry was born nine weeks premature on June 14, 2011 and was only as big as the palm of Richard’s hand. She didn’t inherit her father’s dwarfism.

Dwarf and daughter
PIC BY SIMON KENCH/ CATERS NEWS

Cherry often helps Richard, who stands at 3 feet and 8 inches tall, with daily activities like tying his shoes and doing the dishes. She climbs up on him every morning to reach things on the top shelf of the fridge.

Dwarf and daughter

Our relationship is really special,” Willis told Caters News. “It’s unique and I couldn’t be any more proud of her… We’re like a little double act – we do everything together and I don’t think we could be any closer.”

Cherry started school this month and her father says his having dwarfism has had no affect on how other children treat his daughter.

Dwarf and daughter

I’ve had some tough times but the birth of my daughter was like a breath of fresh air,” Willis told Caters. “Because of the operations I had to have it felt a little bit like I was starting out again because I had to teach myself to walk and all sorts, but Cherry being around made it so special. When she was learning to crawl, I was just learning how to walk again so it really is like we’ve done everything alongside each other.”

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To the PICU Nurse Who Cares for Sick Children (and Their Worried Parents)

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At 2 a.m., you have another energy drink and rubs your tired eyes. Your feet move fast across the intensive care unit floor. You care not only for sick children, but for their worried, exhausted parents as well. It’s just a pillow, just a ginger ale, just you talking to my son and making him giggle — you’re gentle and kind, and I don’t think you know how much it means to us.

Real, raw compassion can’t be faked; it can’t be mimicked with selfish intentions. Compassion is out of love, and when my baby boy came into this world holding on for dear life, I started a journey that showed me the compassionate side of this cruel world. I’ve met people like Amy, people who work late shifts with long hours. People whose feet hurt and whose eyes are heavy, yet you can see the love in them, and for that love I am eternally grateful.

I see you, Amy, and I wish I’d told you these three things:

1. You’re not just a nurse; you’re comfort when I can’t be here. You choose to be the “bad guy” in order to heal these children. You administer shots, place IVs and slowly fill your heart with each and every patient, although they associate you with the pain. I believe you are everything God wanted human beings to be. It is humility, and it is pure love. I believe you’re serving a purpose bigger than yourself. You are amazing.

2. I know you experience the grief of losing the little lives you’ve worked so tirelessly to mend, for nothing more than to see to it that child will smile again. When all efforts are exhausted, and the time comes, you hold families’ hands as they have to say goodbye. That is not for a paycheck. That is love. That is selflessness. You cry for us and stay awake at night for our children, even on your days off. There are just some of them who will likely never leave your mind or your heart.

3. It might wear on you and hurt, and perhaps you question if you want to do it anymore. In the end, you go back, you go back to the little hands and the beautiful heads. You return to the fragile babies and worried parents. It seems you hardly give your heart a night’s worth of healing before you go back to the hospital and allow those sweet children to tear your heart open again, but you do it. I believe you do it because you love it and you love them.

You may think we parents don’t see you. You may think our frustrations are aimed at you, but they’re not. We’re frustrated with what the world has handed us and scared for our child’s wellbeing.

You are appreciated.

I love the extra effort you make to get scrubs with silly faces on them. I appreciate how you carry my daughter’s gift of a flower petal in your pocket. I see that little girl’s picture paper-clipped to your chart. You carry her with you, you carry her home and in the car, because I believe you’re forever tied to this place of healing, fighting and sadness. You’re a part of this side of the world so many never see, are afraid to see and pretend isn’t there. You are amazing, and you have chosen to embrace the fragile ones. You have chosen to shift your energy in order to give and grieve for the sake of a child’s smile.

If you don’t love yourself completely, I sincerely hope you will one day — because to me, that is true beauty.

Follow this journey on Four East Hearts.

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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