Oh, how the times have changed over the years. I’m sure you ask anyone who knew us 14 years ago and they would tell you how wild, crazy, and free we were. That we had a passion that both of us didn’t understand. We had a soul connection that wouldn’t break, a fire that couldn’t be dampered. But, those are all the things that haven’t changed over the years.
After celebrating our recent anniversary, I have taken time to really look back on our life. It’s been 4 years now since I was diagnosed with lupus. I didn’t even really know what lupus was when I was diagnosed. But you did. You told me about a cousin you had that passed away and struggled with lupus for many years. I’m not going to lie, I was scared then and I’m still scared now of what the future may hold for us as a family.
Life has changed so much since my diagnosis. I am no longer able to do a lot of the same things I could do before. I don’t feel like I laugh as much or smile as often. There’s a sadness in my eyes that I am sure you recognize all too well. But there is a sense of security that I have never felt.
I’m not going to lie when I sometimes wonder how you have decided to stay with me after all of these health issues. I’m 32. I never expected this to be how my life turned out. Part of me is scared one day you will just grow tired of it all and leave. You reassure me that will not ever happen, but I would lie if I didn’t admit the thought creeps into my mind on my darkest days. I’m only human.
I often wonder how you find these extra 40lbs juicy and wonder if this steroid induced moon face bothers you as much as it does me when I look in the mirror. The weight loss ups and downs have been a struggle for me since being diagnosed. You know the struggles I faced with my body in college; yet, you find ways to let me know you love me exactly how I am.
You have been our families main provider during the pandemic. Every store visit or family need was laid upon you. Yet, you never complained one time. You wanted to protect me and the kids and you did so with love. You did all this while taking care of your family and working.
I wonder how you are able to give me weekly injections over the last few years, when I haven’t even mustered the courage to do one myself. See, you are more than just my love. You are my caretaker and my provider. You are my husband, my best friend, and father of my children. You have been my therapist for years and never judged me for the mental toll of living a life with a chronic illness.
I shamelessly wonder how you deal with me after I have breakdowns. The mind and body can only take so much and you know that I never like to take a break. These days are unfair and I am sorry. Sometimes, I think you deserve better than what I have to offer on these days.
Yet, each morning you find a way to make me laugh or lend an ear when I’m venting again about what hurts or what I am struggling with that day. You bring me coffee every morning you get off work, even when we have 3 coffee makers here. You know that I love coffee and that I drink way too much of it…but you do it because you care and know that I need it to make it through the day. It really is the small things that count most in life.
On my worst days, when I can barely make it out of bed you are there for me. Even going as far to pick out towels and outfits for me after showers so it can take less of a toll on my body. People without a chronic illness may never understand how many spoons it can take to shower on flare days. These are the days people don’t see. My friends and family rarely see me on these days. In fact, I’m pretty much dead to the world. But you see them.
You are always there to support me through the triumphs and the failures…and failures there have been. You were my main support when I was recently diagnosed with kidney cancer. Most of my friends barely checked on me. Going through a cancer diagnosis and surgery without a lot of support is traumatizing.
Knowing how scared I was and the fact my grandmother passed from the same cancer, you were my rock. I was terrified for myself, for the future of our kids, and for you. Thankfully, we have crossed that mountain for now and you continue to support me through all of my doctor visits and scans.
You are an amazing father. You love our boys with such passion. I love you in ways that many people will never understand. A love like ours is once in a lifetime. We have trekked through so much in life without ever leaving one another behind. We’ve had our struggles for sure and it’s never been easy.
But I don’t want to do this life with anyone else but you. I often think back to our wedding song and how applicable it still remains all these years later. This dark and twisted path has led me into so many directions over the last 14 years, but you have been with me every step of the way.
Rascal Flatt’s never sang a more relatable lyric than “God blessed the broken road, that led me straight to you”. Through sickness and health, you are my one and only love.
An Open Letter to my Healthy Friends During the COVID-19 Pandemic
To my healthy friends,
I felt the need to write this post today to really document the state of the new reality we are living in for those who may not be to this point yet. Within the last few weeks, things have changed drastically in Ohio and many other parts of America and the world.
I will be honest, I feel like most people probably thought I was frantic and overreacting when the first talk of coronavirus made the news. Yet, as someone with a chronic illness and who is immunocompromised, I knew the seriousness of the situation. Having lupus and facing the possibility of a novel virus that could potentially kill me is terrifying.
I have found it somewhat difficult for some friends to understand the seriousness of this virus. I try to remember they are still young and healthy and how when I was the same, I thought I was invincible. But, my how my life has changed dramatically since my lupus diagnosis and especially since my recent kidney cancer diagnosis.
No one really seemed to care about the virus that was killing thousands across the globe, it wasn’t in our neck of the woods. It was some foreign virus that wasn’t our issue. I heard it was being hyped up by the media, that it was a government conspiracy.
Some people couldn’t believe that a sickness could kill so many people, be so contagious, or cause an utter disruption to their ‘normal’ lives. It has to be a conspiracy right? Who in their right mind would not allow sports to continue? What states would just shut down schools? What countries would purposely sustain economic losses?
You see, those of us with chronic health issues have been living a life of terror, panic, and isolation. This is nothing new for us. We will probably fare better than our healthy friends and family when it comes to mentally processing being stuck at home, unable to work, and not able to go to all the social events healthy people normally do.
Unfortunately, this is the normal life of many people living with a chronic illness. We have to constantly watch being around people who are sick. We panic every time we come down with a cold that leads to wheezing in our chests and are constantly scared of serious infections every time we get a fever.
I know you may think that we look paranoid from the outside, but the fact is a simple cold can cause us to develop pneumonia or worse. This is the reason I get so aggravated when I see friends I love have not been taken this seriously.
Part of me wants to stand up and scream, but the other part of me wants to keep preaching advocacy for chronic illness warriors. I feel as though the terrible experience in living a life with a chronic illness has prepared me for this pandemic. I feel if anything good can come from living a life of pain and isolation, it’s always worth pursuing.
As someone with an autoimmune disease, many of us are used to not being able to work or having to work from home. I am used to being stuck at home in isolation from friends and family. I am used to being able to financially contribute to my family with only a part-time paycheck. Finances were stressful as a chronic illness warrior before COVID-19 and will be stressful for many of us after as well.
Social events, ehh, most of you already know that it’s very rare to find me at a social event with a large group of people these days. This is usually because either my lupus is flaring, I don’t want to catch anything, or even my sensory overload and social anxiety that has become an issue in the past few years. Large groups of people sometimes overwhelm me.
Many people are dealing with depression, anxiety, and loneliness right now. As a chronic illness warrior and as your friend, know that I get it. I get what crying on the bathroom floor feels like when you have no control over the bills that are piling up or the realization that you can’t teach homeschooling perfectly like other parents. I get what its like to live in isolation with nothing but your thoughts to keep you company. I get what its like to ache for a real connection and know that acting on it is not worth the risk.
I get what its like to live in stretchy sweats for days on end, without a thought about putting on makeup or dressing up like I used to. I get it when you look in the mirror and are shocked by the reflection staring back at you. I get the anxious feeling from being trapped inside your home and the social anxiety some of you may be developing right now and not even know it.
I write this letter not to be critical or angry at my friends who didn’t get why I was so worried about this virus long before it came to our shores. I am writing this letter because I want you to know that I get it. I get what you are feeling right now and I want you to know this: I got you.
If you are suffering from depression, anxiety, or loneliness; know that you are not alone. Millions of chronic illness warriors are living amongst you as neighbors, friends, and colleagues. If you need someone to talk to, please reach out to me. Send me a message online or let’s video chat together. I love and care about you and want you to know that you are worthy, even though it may be difficult to see among the chaos. Always remember, we fight together!
10 Fun Things to Do With Your Kids as a Chronic Illness Parent
As a mom of two boys 10 and under and as a lupus & fibromyalgia warrior, I completely understand the importance of keeping the kids involved and entertained while you may be physically and mentally struggling. It may seem hard to find fun things to do with your kids as a chronic illness parent, but it doesn’t have to be! Having a chronic illness is not just hard on us as the patients, but it can take its toll on your family and friends as well.
It is hard for us to walk the fine line of doing too much and feeling like we are not doing enough. This is something that I deal with a lot. If we overdo ourselves, we will just make our flares worse or possibly last longer. If we do not spend quality time with those we love, we feel awful and internally struggle with feeling like a failure.
So, in what ways can we possibly have fun with our kids when some days we may barely make it out of bed? There are a lot of fun things do with your kids that do not involve an immense amount of physical trauma on our bodies. Kids love to have routines and look forward to special occasions as a family…even if we don’t always see eye to eye….LOL.
If you are having a difficult time finding family friendly things to do as a chronic illness parent, fear not! I have come up with a list of 10 [relatively easy and most are FREE] fun things to do with your kids when you are a chronic illness parent. Coping with a chronic illness in the family can be challenging at many times, but this list has some easy ways you can ensure quality time with your family. You may be surprised at some of the things on the list that you have not even thought of!
1. Host a Weekly Paint Session
Honestly, I haven’t met too many kids and even teenagers who do not like to paint. It’s kind of one of those hobbies that people from all ages and walks of life have appreciated for centuries. This is a great thing to do with your kids that you can do from the comfort of your own home. If you are having a flare and need a low energy and calming activity to do with your kids, start with an easy paint project! Choose a slow day that works best for your family and make that family paint night. The kids will look forward to this day each week and the quality time you will be able to spend with them will be so worth it!
What do you need for a paint session?
Youtube is an awesome place to find free tutorials for your weekly painting sessions. For this type of activity, you will definitely need to get a few staples before beginning your paint sessions. If you do not already have an arsenal of art supplies, it is important to get some quality paint, brushes, and canvas. You can check out some of our favorite brands here.
Here’s a couple of easy tutorials to get you started!
Art therapy can be used as a complement to traditional mental health treatment. The aim is to manage behaviors, process feelings, reduce stress and anxiety, and increase self-esteem. So, while your kids may thoroughly enjoy each art session you have together, know that you are also doing yourself a favor. Reducing stress and anxiety when dealing with a chronic illness can be beneficial in leading a happy and productive life, even while sick.
2. Learn a New Language Together
Learning a new language with your kids can be quite a fun and rewarding thing do! The best part is that many language classes geared towards kid learners are FREE or pretty low cost! These are courses that you can complete online.
Kids will love learning a new language with you and sharpening their skills as the weeks go on. Soon enough, you will be able to hold basic conversations with your child in another language and that is simply amazing. This fun activity has the potential to really enrich the lives of your child and their future without ever having to leave your house.
What do you need to learn a new language together?
You mostly just need a computer or smart tv to learn a new language with your child. Of course, you could always utilize free services at your local library as well, so that may be an option if you visit your local library often. You also need a little spare time in each day as well. Many experts believe that you should study for at least 30 minutes a day to really learn the language.
Duolingo offers a wide variety of languages that you and your child can learn together. The best part is that you can use it for free and from the comfort of your home. They have a really nice dashboard that helps you track you progress as your go further into the lessons. I highly recommend them for your new language adventure!
3. Practice Yoga Together as a Family
If you haven’t heard of the massive health benefits associated with yoga, now is the time to reap those benefits! According to the American Osteopathic Association, “The relaxation techniques incorporated in yoga can lessen chronic pain, such as lower back pain, arthritis, headaches and carpal tunnel syndrome,” explains Dr. Nevins. “Yoga can also lower blood pressure and reduce insomnia.”
What do you need to practice yoga together?
You really only need some sort of streaming device and some comfortable clothing. If you want to make your yoga sessions a daily or weekly activity with your kids, I highly recommend investing in a yoga mat for both you and your child. Yoga mats can provide stability and comfort when doing certain poses. You can check out some relatively priced yoga mats here.
Here’s a really awesome purple yoga mat if you are looking for some lupus or fibromyalgia color inspiration.
If you are looking for more yoga videos targeted towards kids, here’s a few that can help get you started for free.
Of course, these are just a few of many yoga tutorial videos on Youtube. If you are looking for more inspiration be sure to check Youtube first. There are many yoga videos aimed towards both kids and adults and can help ensure your family activity keeps everyone entertained and healthy!
4. Plan a Weekly Cooking Class
This is one that most people probably have not even thought of but would help them out so much, especially during flare days [or weeks]. Learning to cook is a vital skill for our children to learn before the day comes and they are living on their own. I truly believe with supervision that kids of all ages will have a fun learning and bonding experience getting to cook with you.
What do you need to cook together?
This one takes a little planning and you will obviously need to purchase ingredients for the recipe you decide to work on together. It may involve a little more planning than the other activities on this list, but it is sure to be delicious and validating in the end.
Here’s a couple of easy tutorials to get you started!
It is important to always supervise your kids in the kitchen. Kitchen accidents happen more often than most of us would want to believe, so its important to always keep your eye on your child while cooking together.
5. Have a Family Game Night
A family game night might seem a little too traditional for your kids, but they have long survived as family traditions because they are such a fun and easy way to have fun with your family. Dedicate a certain night of the week that your family can plan to hang out and have some friendly competition!
“Games allow us to measure learning in ways we couldn’t do before,” he said. And, he added, echoing Gee’s discussion of non-cognitive learning, “knowledge is not the outcome we want; we want students to learn how to make choices.”
Games are a great way to have fun with your kids as a chronic illness parent because you are able to play the games at home in your PJs if you want. You can also choose games based off of how you are feeling that night. The flexibility in a family game night makes it the perfect activity for you to do with your kids.
What do you need to game together?
It’s 2020 and family game night does not need to be limited to only the boardgames you remember from your own childhood. But….these are still fun and an awesome way to make a routine of your game night.
As you can tell, the options are limitless when it comes to finding fun and exciting games for an awesome family night! Whether you decide to buy traditional board games or utilize the array of game apps on your smart TV, you are sure to have a great time with your kids and never even have to leave your house when looking for fun things to do with your kids as a chronic illness parent.
6. Have a Karaoke Night
I know, I know! Seriously? Yes, seriously. Throwing together a weekly karaoke night with your kids is sure way to initiate family laughter and watch your children’s confidence skyrocket! Don’t believe me? Give it a try one night and see how much fun your family can have without ever having to leave the house. Pick your favorite song of all time and get ready to rock the house!
This particular model enables bluetooth capabilities so that you can connecgt Easily connect to your iphone iPad android Smartphone iPod, Mac, tablets, laptops, TVs and MP3 players or PC for music entertainment.
You can find many free karaoke apps on your smart device.
Some great examples include karaoke apps like:
7. Have a camping night…inside!
What fond memories your child will keep for a lifetime when you plan an indoor family camping night! Kids love building tents and forts and this activity helps to really help grow their imagination. If you are feeling well enough and the weather is cooperating, maybe consider a backyard camping night. No worries if you do not feel like leaving the house though, you can definitely set up a room as your dedicated camping spot for the night.
What do you need to camp-in together?
You technically do not need much to have a camp-in night. If you have some extra blankets and sheets, you can build a fort just fine with a little inspiration. Of course, if you want to make camp nights a routine activity, you could always splurge on a really cool tentlike the ones below.
Of course, what fun would camping be if you did not have a great selection of tasty camp snacks?! There are a ton of easy to create camping recipes and ideas online and I have included a few of mine below. These tips and recipes are quick and easy and can help ensure a fun activity for you to do with your kids as a chronic illness parent.
You can find many easy recipes and indoor camping tips online.
Who doesn’t love to kick back and enjoy a fun movie, especially in the comfort of your own home. Deciding to host a movie night does not need to be anything like a normal movie at home! You can transform your home into your own personal theatre. Depending how well you feel, there are easy ways to really make family movie nights fun and exciting for the whole family.
What do you need for a home move night?
Really just a movie, popcorn, and a cozy blanket is all that is needed for a simple move night at home. Look for a movie that is family friendly and get ready to relax and enjoy quality time with your kids while having a chronic illness. This is one of the best things to do when you are having a rough flare day.
Check out some of these ideas to really jazz up your family movie night!
Of course, you can always jazz up your family movie night by including a few extra fun things! Take your family movie night to a next level with some of these cool ideas!
Printable Movie Tickets are an easy and cheap way to really create some excitement for kids
Do you have a budding scientist at home? Why not have a mad scientist night where your family can conduct fun and exciting experiments from your own home? Encouraging your kids to enhance their scientific knowledge and giving them quality time doing a family friendly activity makes a mad scientist night a great activity to do with your children as a chronic illness parent.
What do you need for a family friendly mad scientist night?
Many kid friendly science experiments can be created with products you may already have in your kitchen. There are many cool ideas and videos online that can help you pick out age appropriate science experiments for your mad scientist night! I have found a few that I think are really fun for kids and easy on the ingredients that are needed to have an out of this world time!
Photos are one of my favorite things because it allows us to really look back on life and enjoy memories. If you are a parent with a chronic illness, it may be hard to plan a professional photo shoot with your family and everyone’s schedules. Yet, there is no need to worry! You can host your own photo shoot night at your house! You could plan a special theme or may even consider cute matching pajamas for your family photo night! This is an awesome and fun activity to do with your kids as a chronic illness parent. Not only does this leave you with some amazing memories you can look back on over the years, but you are able to spend quality time with your kids without having to exert much physical effort during bad flare days.
What do you need for a family photo shoot night?
You really only need a camera, your family, and a little imagination to have a successful family photo shoot night at home. As always, if you scour the internet, you can come across some really cool ideas for themes for your photo shoot night. You can also find fun props or backgrounds that can help you pull off a pretty awesome family photo. You can check out a few of my favorite ideas below!
There are many ways that you can have fun with your kids as a chronic illness parent. These 10 activities are perfect ways to get quality time with your kids from the comfort of your home. If you are going through a rough time physically and need a little inspiration to help you bond with your children, you should definitely plan one of these chronic illness parent friendly activities with your family today!