What a ‘Great Day’ Means to a Person With Chronic Illness

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What makes chronic disease so challenging is that we’re never 100 percent. Our great days are different from yours; I promise you that. I think many of those who love us can misunderstand what a great day means to us, and sometimes feelings can get hurt. So let me share my parameters with you, and then maybe you can share yours or use this for conversations with your doctors, friends and family.

I have a baseline I consider my normal. I accept that my baseline is not perfect. It comes with serious and often excruciating pain and fatigue. My symptoms are managed with medicines that we dial up and down, depending on the severity of my symptoms. Within that baseline I have some great days, some good days and some bad days. This is my life and as a family we live in the baseline; we accept it and made peace with it.

So I have bad days in my baseline, too. Having a bad day means I stay in bed, watch TV and rest. On good days, I run errands, make dinner for the family and go to bed happy at 8 p.m. feeling satisfied and successful. A great day is a good day with a movie or the beach tossed in. All of these days are still filled with pain and discomfort. The pain is tolerated and managed. I can guarantee you that if I have a great day, the next day is a PJ or sweats day because I need to take it easy. It’s a dance. It takes practice.

On the scale of 1 to 10, I will never have a day that’s a 10. My body is not in the 10-generating business. For me, a 10-worthy day would be a day without pain, and I’d have the energy to do a full day of work and activities.

I want 7’s and would love two hours of an 8. I accept and celebrate a few hours of a 7 or an 8 on any given day. So that’s my goal. I try to make the best use of the energy and pain management on a given day. I need to take a siesta every day if I want to make it to dinner. That means I need to lie down on my bed for at least an hour or maybe two.

This is my life, my normal and I’m happy in this place. I take great comfort in this baseline. I recognize to many that it may seem limited, but I’m happy here. I don’t need much other than to enjoy and bask in the great days I get to spend with my family and friends together.

My baseline changed in May after a simple case of strep throat developed after my daughter, Norah, went on a third-grade field trip. (Let me be clear: I would do that field trip over and over again because third-grade field trips are amazing.) I’ve been battling for months, and in the last week, well, my body decided it was time to crumble. When my thoracic pain was too intense and I couldn’t find a break from the pain, we moved out of our baseline into messy territory, which is a flare.

A flare for me is when the pain and inflammation is widespread, systematic and unrelenting.I won’t call a flare a flare until it’s kept me in bed a solid three or four days. In the past, a flare also required extended stays in hospital. Now thanks to my amazing medical team, most of my care can be done as an outpatient treatment, and I can sleep in my own bed. When my lungs and heart get inflamed, I like to sit with my back up against a wall. It makes it easier for me to breathe somehow. If I lean forward, the pain is excruciating, and if I sit perfectly straight and don’t move, it’s tolerable.

The hardest part of managing a chronic disease is you never know how long a flare will overstay its “unwelcome.” The other problem with a flare is that if you do too much (like I did this week), it just sets you back even further from returning to you baseline. And so, planning becomes challenging. Does your spouse cancel his business trip? Do you call someone to stay with you? Do you line up a contingency on top of the contingency? The mental planning of a chronic disease is exhausting by itself, then you throw a Type A personality on top and it’s a hot mess.

a family including mother and father and son and daughter

I’m writing this for all the other pilgrims with chronic diseases who may not have the support and love that I do. Many of our loved ones are so thoughtful with dinners, carpools and visits. If you’re a loved one of someone with chronic illness, here are some things I think you should keep in mind:

Don’t ask if we’re feeling better yet. Instead, ask us, “Is today a good day?” Sometimes nothing hurts more than being reminded you “were” doing well. And whatever you do, don’t ask us if we overdid it to get here. That doesn’t help. We all want the same thing: to be one day closer to our baseline. Please be patient with us.

Tell your loved one that you love them and that you’re praying and thinking of them.

Make us laugh. Nothing makes me happier than to hear stupid stories when I’m in bed. I think trashy gossip magazines and mindless books are wonderful.  

Spend time with us. Just last night, my husband, Jeff, took me in my PJs to the beach. I just needed to look at the ocean. That was perfection. I watched the kids pick up shells, and I could see, smell and taste the ocean from the passenger seat. So offer to drive the getaway car for a friend or offer your own sofa. After being stuck in your house forever, sometimes another venue is delightful.

Today, I’m one step closer to my baseline,  and I’m humbled and grateful for all the love, prayers and notes from my loved ones.

Follow this journey on Pilgrimage Gal.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? 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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My 6 Tips for Traveling With a Child With Special Needs

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We’re so lucky to have one of the best dermatologists we could imagine, and he has always encouraged us to do anything we normally would as a family even if it takes extra planning or if we need to get creative.

One of those things is traveling.

Even though traveling can be challenging figuring out the logistics for my daughter Brenna’s skin care and working around the various weather conditions (we couldn’t believe how much the dry state of Colorado affected Brenna’s skin; we had to apply nearly twice the usual amount of Aquaphor!), we’re grateful for the chance to show our kids some other parts of the country and give them new experiences. Since Brenna’s first vacation two years ago, she’s now been to 11 states. We haven’t flown yet, but that’s coming next year.

Here are six things I learned about taking on the open road with two small kids and caring for a medical condition along the way:

1. Always know where the closest children’s hospital is.

A physician we saw in Chicago made this comment to us after Brenna’s gastrostomy tube (G-tube) was placed, and it was one of those obvious statements we had never considered before. We researched surrounding hospitals on Brenna’s first trip, and we actually had to stay overnight in a children’s hospital with my son Connor on last year’s vacation.

2. Alert your physicians/specialists and work out a plan for contacting them after hours if necessary.

We’ve called our pediatrician from the road and texted photos of Brenna’s skin to our dermatologist while traveling. We also coordinated a prescription to be picked up at a pharmacy during a stop. Things always seem to pop up on vacation, but when you’re dealing with a serious medical condition, it’s really important to be able to contact your doctors.

3. Bring way more than you think you’ll need.

If you have the luxury of traveling by road instead of plane, you can pack the trunk full of anything you think you might need. Of course, you can always purchase many things while on vacation, but if there are special products, like prescription meds you use only occasionally or favorite foods, bring it all. That also goes for any extras like a back-up G-tube or any other medical items.

4. If there are special accommodations that need to be made at a hotel, restaurant, theme park, etc., call ahead.

Keep a clear record of the agreement of those accommodations and have a plan in place to carry them out if necessary. We haven’t had to do this yet, but I’m already anticipating some contact with the airline before our trip to the FIRST Family Conference in California next year.

5. Let it go.

Caring for your child on the road might may not match up with what you can do at home and that’s OK. I think that “good enough” is much easier for traveling. We always look forward to a great bath after a trip, but Brenna’s skin has been fine when we let her enjoy vacation even if it’s not at its absolute best.

6. Realize that it may be tiring, but it’s so worth it.

I think traveling with small kids or children with special needs gets easier the more you do it. I thought our first vacation would be miserable, but the kids rode more than five hours without stopping with very little fussing. And the whole week was much less stressful than I had imagined. Practice with smaller, more frequent trips. I’m glad we had some three- to six-hour trips under our belt before we drove across the country last year.

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Follow this journey on Blessed by Brenna.

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There's More to This 'America's Next Top Model' Contestant Than Meets the Eye

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Nyle DiMarco is more than just a pretty face. He’s making strides for the deaf community.

The 25-year-old model and actor is the first ever deaf person to appear on Tyra Banks’s long-running reality TV show, “America’s Next Top Model.” He’ll compete in the show’s 22nd season, set to air on August 5 on the CW channel.

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Via Instagram

DiMarco only started pursuing modeling last fall after several photographers asked to shoot him. He says that so far he hasn’t encountered any difficulties with being deaf in the profession, the Fredrick News Post reported. In fact, DiMarco says speaking American Sign Language (ASL) has helped him to read the expressions on the photographers’ faces.

Sometimes hearing photographers would question (my) ability, but then they would be proven wrong and even impressed,” DiMarco told the Fredrick News Post. “ASL requires facial and body expressions, so that is indeed a skill that would not only surprise people but bring energy and story out of a picture.”

This isn’t DiMarco’s first TV appearance, as he played the role of “Garrett” in the ABC Family show “Switched at Birth,” Reality Today reported.

Check out some photos of the model below:

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 Go here to see the America’s Next Top Model cycle 22 trailer.

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She Posed in Lingerie to Prove People With Disabilities Are 'Capable, Sexual Beings'

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Rachelle Friedman Chapman was celebrating her bachelorette party in May 2010 when one of her best friends playfully pushed her into a pool. She hit the bottom of the pool head first and endured a C6 spinal cord injury, causing her to become a quadriplegic at age 24, according to her website.

Since the accident, Friedman Chapman, now 29, has worked hard to make the best of her new life. She’s a motivational speakerpublished author and, as of this year, a new mom.

Now, she can add one more accomplishment to her list: she makes a stunning lingerie model.

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Photo credit Revolution Studios

Friedman Chapman posed for a photoshoot wearing nothing but lingerie to counter negative stereotypes about disability and sexuality.

“I saw in the media this seemingly overwhelming consensus that people with disabilities are unlovable, asexual and just plain not sexy,” Friedman Champman wrote in a Facebook post on July 27 accompanying the photo above. She added that she struggled with her self-image after becoming a quadriplegic, and the lack of positive representation in the media didn’t help. “I wanted to do something for not only my confidence, but for anyone in my situation who thinks they aren’t beautiful because of a flaw,” she wrote on Facebook.

To help spread her message of body acceptance and love, Friedman Chapman is inviting others to share what they love about themselves on social media with the hashtag #WhatMakesMeSexy. Her goal is to prove that people with disabilities can be sexual regardless of how they look. But more than anything, she hopes her social media campaign will help herself and others feel comfortable and sexy in their own skin.

“The paralysis is part of me. The catheter is part of me, but neither is all of me,” Friedman Chapman wrote on Facebook. “I’m doing this for those who can’t see past a wheelchair. I’m doing it to show that we are capable, sexual beings, and we are not to be overlooked.”

View more of Friedman Chapman’s beautiful photos from the shoot below.

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Photo credit Revolution Studios
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Photo credit Revolution Studios
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Photo credit Revolution Studios

Read Friedman Chapman’s entire Facebook post here.

To learn more about Friedman Chapman, visit her website and Facebook page. For more information about her social media campaign, search the hashtag #WhatMakesMeSexy.

Related: This Sex Party Is About So Much More Than Sex

h/t HuffPost Good News

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6 Ways Social Media Has Changed My Special Needs Family

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As a history buff, I often think about what life for my son and me would’ve been like 100, 300 or 600 years ago. Children born with disabilities might have been shunned or forced into institutions instead of being allowed to live out their life with their families. Typical children might have had little if any exposure to children who were different than them.

Because of this, I can’t help but feel extremely grateful my son was born in this time period. It’s a time when medical advances are changing the lives of children like him every day, and also when society is actively accepting and embracing children and adults with special needs.

What provoked the shift? Mainstreaming children in schools has certainly helped. Thank God the time of hiding children with differences in a back room is over. But I believe technology was the real impetus for prompting change and progress.

Before the existence of the Internet, special needs families and children led vastly different lives, one that most of us could not grasp no matter how hard we tried. But because of social media, we’re reminded daily about others around us. These families share similar stories as well as different ones. That feeling of connection is empowering, and the feeling of empowerment turns into acceptance.

Here are six ways social media has changed the lives of my family. How has it changed yours?

1. There’s more visibility of various disabilities.

You might not realize the amount of diagnoses and degrees of disabilities out there until you’ve joined various website communities. Websites like The Mighty build awareness for their readers. They also educate and inspire readers to develop empathy. I belong to nearly 20 different Facebook groups pertaining to children and adults with disabilities. Because of this, my news feed is flooded daily with pictures of children who are similar and different to my own son. Not only am I learning from this, but seeing their pictures every day reminds me that only walls and miles separate us. I have my own community just a click away.

2. My questions are answered immediately.

Although most special needs parents aren’t doctors, many of them still have a lot of knowledge and experience. I can post a question about feeding tubes or seizures and within 20 minutes, I’ll have 20 responses. I’m rational and realize not everyone’s responses are going to be good ones, but I read through them and almost always find helpful information. This doesn’t mean I don’t take my child to the doctor or ask the doctor questions when necessary, but sometimes it’s nice to ask questions other parents can answer, such as, “How did you know when your child was ready to have their G-tube removed?”

3. I receive support from other parents.

I have a relationship with about five women I’ve never met. When one of us posts about having a bad day, we usually message one another. In the message we assure one another and hand out compliments on the job we’re doing. When I post pictures of something amazing my son has done, I have hundreds of cheerleaders typing in their praises for the both of us. It’s hard knowing my son might never make “real” friends due to his disabilities. This makes my son’s online supporters the next best thing.

4. Reading other people’s stories keeps me grounded and grateful.

Please don’t mistake this as feeling an emotional benefit to someone else’s misfortune. That’s not what it is. Instead, it’s an ability to look outside your box and realize you’re not the only one in the world where things didn’t come out picture perfect. This keeps me grounded. I can sit and sulk that my son can’t walk, talk, use the toilet or chew food. Or I can remind myself that he can crawl, drink from a cup and reach his hands out when he wants me to pick him up. Some parents are still waiting and hoping that one day their child will learn those skills. And therefore, I remain grateful for the abilities he does have instead of dwelling on the ones he doesn’t.

5. I know I’m not alone.

Back when I mentioned life for a special needs family hundreds of years ago, I think loneliness had to be the single most difficult factor. As humans, we’re social creatures. We rely on relationships with others. When we feel misunderstood, rejected, ashamed or isolated, it’s difficult to enjoy what life has to offer. The benefit of being part of many online communities is feeling understood, accepted, proud and included. For many special needs families, acquiring these four benefits can only be reached through social media. It’s truly their lifeline.

6. It can be a great source of guidance.

Whether it’s reading about how to store medical supplies or when to contact a professional for advice, the amount of guidance available on social media is limitless. Although you have to be careful it doesn’t become a time-sucker, if you stay focused, you can get the advice you need and learn essential time-saving tools. Additionally, there are often suggestions about things you can purchase to make all of your lives easier and better. The best thing? This advice is free.

For me, staying positive and remaining focused on the things my son can do is the one thing I fight for the most each day. Social media tears down the barriers that would exist without it. I urge every person in America to join at least three special needs online communities. It prevents us from staying in our bubbles and allows all communities to cross over and share our worlds with one another. This is essential to fostering our human bond as well as nurturing our humanity.

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. 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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Why Some Parents Are Dismayed Over Lego's New Wheelchair-Using Figure

The toy company Lego recently released a Duplo Community People Set, a collection intended to educate young children about a variety of different people and occupations.

This latest collection includes something parents all over the world have been requesting on behalf of their children for months: a Lego figure with a disability. However, the new toy isn’t exactly what they had in mind. Rather than including a child with a disability, Lego’s new toy set features an elderly man in a wheelchair.

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Photo from Toy Like Me press release

Organizers for the social media campaign Toy Like Me, a parent-run campaign calling on the toy industry to produce toys with disabilities, say the wheelchair figure furthers the stereotype that disability only occurs in older people and does little to support children who live with disabilities.

“We applaud Lego for producing a wheelchair-using Duplo figure,” Rebecca Atkinson, co-founder of the Toy Like Me campaign, said in a press release. “But it’s so disappointing that the only wheelchair-using figure across all Lego products is an elderly person being pushed along by a younger figure. What does this say to children about disability? That it only exists in the over 65?”

The campaign’s Change.org petition to prompt Lego and Hasbro to join the toy box revolution has garnered more than 17,800 signatures so far, but according to Toy Like Me, Lego has not yet responded.

To learn more about the Toy Like Me movement, visit the campaign’s Facebook and Twitter pages or search the hashtag #ToyLikeMe.

Related: How This Mr. Potato Head Doll Could Lead to Better Disability Representation in Toys

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