chronic illness

#LoveWhoYouAre

When my daughter was diagnosed with an autoimmune disease when she was in the second grade, it was jolting. We had been managing her life threatening food allergies since she was an infant so adding something else on top of that ignited concern over how hard this would get for her.

We managed it and the life adjustments we had to make just became part of our everyday routine. No matter how hard life gets you figure out a way to make it work. It becomes second nature and you accept it. The waves of chronic pain come and go – we appreciate the times where her body isn’t attacking itself and we do the best we can to get through the hard times. Honestly, it becomes such a part of the process that we don’t even think of it anymore. It’s not a negative, it’s our way of life.

She has had an exceptional past year of minimal flare ups. We truly appreciate those times since we know they are temporary. I was especially thankful for the lack of major flare ups since she just started middle school.

She had hives and red splotches all over her face and arms when she got home from school last Wednesday. As I asked her about them they multiplied before my eyes. Initially we thought it was an allergic reaction. The hives turned into oozing blisters that she has never had before – this was something different. This was something new. We haven’t had anything new come up for many years.

My daughter is twelve years old and has this genuinely amazing ability to shine despite how hard it gets. She is full of awesomeness and isn’t a complainer. She is truly a sweet, kind and happy kid. She isn’t naturally selfish and because of that I think she lacks a personality trait that makes her obsess over herself or her looks. She would rather act a little crazy, silly and not take things seriously than be the girl who is checking herself out in the bathroom every passing period.

I don’t know how I got so lucky – she inspires me and has honestly helped me get through bed rest with her constant optimism. Sure, she has her moments of damaging my calm, trying to push limits and epic freaking eye rolls over chores – she is still a normal tween in most ways.

But, she is my shining ball of hope in this world and I hope her health hurdles won’t change her. With such a visible disability that has the ability to cause her so much pain she doesn’t even want to get out of bed I can understand if she became angry, resentful or bitter.

She embraces the fact that everyone is different in their own way, but I wasn’t sure how she would react this time. Being different is difficult at any age, but especially in middle school. Adding in social platforms like Instagram for teens and some of the potential drama that can come from it I wasn’t sure what she would do.

We always take pictures of her flare ups so we can document them. That may sound strange, but when you have a special needs child who has chronic illness record keeping is important. After I took a photo of her arm she asked if she could share it on Instagram. She said she didn’t want to hide what she really goes through and she wanted people to understand. She wasn’t looking for pity or sympathy… she just wanted to be real. I was so proud of her.

Love Who You Are

After a major flare up we usually spend many hours with her immunologist (and often other doctors) running blood work, xrays and trying to figure out what is happening. This was not easy with my modified bed rest limitations and my husband having to juggle his work from the lobby on his laptop – but, we made it happen. It isn’t an easy process and she get’s a lot of blood drawn at one time. I’ve always tried to make our long days at the hospital fun – as fun as it can be considering the circumstances. She shared some of it with her friends on Instagram and had a very upbeat personality about it. Again, I was very proud.

#LoveWhoYouAre

The night before Mother’s Day she insisted on baking me some goodies. No matter how terrible she feels she is still this thoughtful little human being who muscles through it and thinks of others. She was emotionally in a really good place – but there was something weighing on her. She was dealing with moments of sadness with how her face and skin looked. She was frustrated at how her body reacts. We talked about all of that and it was heart wrenching.

She decided to take a selfie and share it with her friends. My daughter doesn’t want to hide what she goes through and she doesn’t want to be ashamed of how she looks. She doesn’t see anything wrong with it and she knows she cannot control how others may see her and doesn’t care to. Proud doesn’t begin to explain how I felt in that moment.

She wrote -

Life is a struggle every day but nothing can keep me down. Despite my health I can still be happy with who I am and that’s just how I think the world should work.#carefree #beyourself #lovewhoyouare

#LoveWhoYouAre

I’m sure she will have many low moments with this. I’m sure I will be there to dry her tears over the years when she can’t focus on the positive. I’m sure she will go through phases of anger, bitterness or resentment…

But, right now I can take comfort knowing that she can have this perspective at such a young age. Right now I can know that she will be okay. Right now is what matters most and we will face those battles together in the future.

Right now, I hope each and every one of you can #lovewhoyouare and if not…

Live, laugh and ninja kick those obstacles out of the way until you do.

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I expected middle school to be a complete nightmare for my daughter. Not JUST because middle school aged kids are hormonal and my memories of those times were… well… insane. But, because her situation with her health is a little different.

The past two weeks have been hard on her physically. She had a bad allergic reaction, her gastrointestinal issues flared up, eczema and hives covered her entire body and she just felt terrible. This leading up to school starting has been nerve wracking.

When you have the usual frustrations and concerns over your kid entering middle school and then add life threatening food allergies, autoimmune issues and gastrointestinal problems it’s a recipe for freaking-the-crapsticks-out! She was affectionately referred to as a “bubble kid” when she was a baby. Back then things were bad and our road was really rocky. It was difficult to say the least. Back then it seemed unlikely that she would be able to be in public school… and it didn’t seem at all possible for her to attend middle school.

Here we are, 11 years later and still fighting the food fight with a positive no bullshit kind of attitude. Well, she’s the positive force and I’m the no-bullshit bulldozer. It works. I’m constantly amazed by the challenges we overcome and the young lady my daughter is becoming. I look back at everything we have been through and I am just beyond thankful for where we are today.

I never thought I would feel like “Today is a freaking amazing day” on the night before she starts middle school.

I was expecting a ton of hurdles and frustrations managing her health needs, new admin staff and lots of teachers. I thought I was going to have to go in with guns blazing and flipping my shit to get what she needed.

Instead? I’ve been texting, emailing, meeting, calling and laughing/joking with those who oversee her. Everything we needed we got and THEN some and without question or complaint. They have had some amazing success stories with kids who have even more complicated IEPs and they get it. I was thanked for being so informed, logical and having a solid IEP. This response felt amazing. I am thankful for all her doctors, previous teachers and school staff that were there along the way.

Oh sure, we learned a LOT from those that were naysayers and general pains in my ass along the way as well. People who push me only supercharge my instinct to fight back harder and we had to fight a lot.

She starts her middle school adventure tomorrow with a safety net that we both needed. She is able to start school knowing that she has a plan in place with informed and friendly staff that is looking out for her.

This is huge. This is not what I expected. Every step of the way I became more and more relieved. I kept waiting for that one thing… that big hurdle… that something that would deflate this amazing feeling of woohooness.

It never came. That hasn’t happened before and I’m appreciating it right now.

This is only the start and I know we will face more hurdles along the way. But, for right now I am thankful that she will be able to start the day just as any other typical kid. She can start this adventure knowing that everything is taken care of so she is in a positive and safe environment. She can focus on worrying about meeting new people, getting lost and who she will know.

Guess what she worried about tonight? Her NAILS! She wanted me to paint them. She wasn’t stressing about anything other than her nails. That, right there, may seem silly but for me it was exactly as it should be.

I can spend the morning with less stress knowing that all will be well.

Because we make sure it always will be well and this time it was just that much easier.

Maybe I will learn from her and do something about my nails in the morning and be thankful that is all I should worry about.

Thank you all for being supportive to her and joining us on this journey. It may sound cheesy but I truly believe you have to ninja kick those obstacles out of the way to happiness.

She is my proof.

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When you have an infant there is nothing more frightening than them being really sick.

It consumes you.

All you want is for them to feel better again.

When their illness goes on for longer than it should you are overwhelmed with worry, guilt and a hint of terror.

How bad can it get? When will my baby recover? What if they don’t?

Don’t ever Google that shit, by the way. Nothing good ever comes from Google when your kid is sick.

Panic sets in at some point between the sniffles and unexplainable symptoms. Your adrenaline kicks in, you feel knots in your stomach form and there are moments of helplessness.

Sometimes all you can do is cry, alone, in the bathroom before facing it all again.

Doctors often say things to make it worse. They mentions possibilities and worst case scenarios. Of course, you focus on those worst case scenarios until the results come back.

Usually, you are sent home with a prescription, some hope and eventually get answers.

You eventually see your baby start to get relief. You see your baby heal. You wake up one day and forget that sinking feeling of despair when you were playing out the worst case scenarios.

The worry fades.

The panic has washed away.

Life goes back to normal.

Life is typical again.

When your chronically ill baby doesn’t have a typical life that worry never fades.

When your baby has life threatening health issues the panic never washes away.

When your definition of normal is living in a constant state of concern and consistent frustration from people who either don’t get it or don’t give a shit you really live for the good moments.

You live for the small bumps in the road in between the devastating ones.

You long for the days where it’s just a cold instead of something worse.

You hold your baby a little tighter, a little longer and a little stronger when you live each day knowing the reality of the pain and finality of the precious life ahead.

I’ve been holding on to mine through the 11 years of her difficult life and all those emotions have never faded, subsided or washed away completely. Our relief is temporary like a small sigh before you have the wind knocked out of you.

People tend to complain a lot online and, naturally, it irks me. There are days where my feeds are full of whinese more than anything positive.

When I hear people complain about their kids having a cold or any of the normal injuries and illnesses in childhood I truly wish they realized how lucky they are. I’m thankful, for them, that their frustrations and concerns are temporary. Sure, I’m even a bit envious.

In some cases where someone is always complaining about their minor illnesses or injuries like it’s the end of the world to get attention I just want to samurai slap them. I’m not a saint, obviously.

The cards we were dealt with supercharge us to make the most out of life. It has shaped me as a mother and molded the young lady my daughter has become. I know this and love our lives as well as where we are now despite the hurdles we ninja kick out of the way.

That doesn’t stop me from knowing I would trade or give anything to have a temporary feeling of worry, panic and annoyance with my child’s illnesses.

So would she.

Random Tidbits: I started writing this months ago when my daughter made an interesting observation about whining about illnesses. She rarely complains when she gets sick. She doesn’t do it for attention and she just wants to hide and get through it. She doesn’t like pity. She told me one day, “How come people who aren’t really that sick complain like they are as sick as I get but I never act like that?” Her and I talked about it in length and she concluded that they must just be very lucky to be able to complain so greatly over such minor things. She is rad like that. 

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Post image for Chronic Urticaria (Hives) and How My Daughter Deals With It Better Than I

Chronic Urticaria (Hives)

Earlier I posted a picture of my daughter’s urticaria aka hives on Instagram. It’s not my usual funny faces, nature and random acts of silly I put out there but there was a reason. I got some amazing feedback and a couple people who thought it was wrong I posted it because it made them uncomfortable.

I get that… it makes her uncomfortable too.

It was a mild reaction, thankfully. When I picked up my daughter from school she was her usual happy, brave and optomistic self but I can always see that look of fear behind it all. When the benadryl kicks in her stress levels (and mine) drop. The school secretary always compliments us on how amazing she handles these hurdles. That means the world to me.

These situations are not easy in the slightest. As much as I am freaking out on the inside I deal with it all very matter of fact, with a smile on my face and try to keep her calm. A reaction can go from okay to really bad quickly and we have to be able to deal with it as it comes. Not a situation where I should be losing my shit.

Seriously, I want to run around screaming – freaking out – yelling and fall apart. Hives can turn into anaphylaxis shock and she could die from it. However, I have to be cool. I wasn’t this time. As soon as we got in the car I started crying. She isn’t used to that. I knew she was okay at that point and I explained I was just mostly sad for her. She hasn’t been doing well lately and right when we had a couple of weeks of being on the seemingly upswing this came out of nowhere.

To quote Rory “Pond” from Doctor Who: “Oh god, I was going to be cool. I wanted to be cool. Look at me.”

I actually said that and it made her laugh and broke my moment of uncoolness. I’m so thankful that my daughter loves Doctor Who. She even said “Hey! That is what Rory said in a Good Man Goes to War!” (I am so proud)

Anyway,

She has idiopathic chronic urticaria which basically means she gets hives constantly often from an unknown and unexplanable source… sometimes.

She also has life threatening food allergies, mild arthritis and an autoimmune disease.

Yet, she is the happiest kid you will ever meet and stronger than most adults I know.

When she gets a reaction a few things go through my head. First – is it going to be an anaphylactic reaction? What caused it? How is she feeling emotionally and physically?

We discuss what happened or what may have caused it. I take notes, pictures and write down any pertinent information. We decide what needs to be changed if anything. Then we find a way to distract from the moment while her medicines kick in. If it was a severe reaction we would be off to the emergency room…

Thankfully, it rarely comes to that since we have control over what we can.

But, there is always that wild care with the idiopathic chronic urticaria. We just have to make the most of what we can.

When she had the reaction this week and took the picture for our records she asked me if I would share it online. I hesitated. She explained that most people don’t understand what she goes through until they see it. She knows that I explain what she goes through but it’s different if you see it. She compared it to “reading novels” compared to comic “graphic novels” and how what you picture in your head may not be the way the writer intended.

My ten year old girl is wise beyond her years.

Anytime I talk about her health on my blog she gets full editing rights. She has reached an age where she is taking a big step towards advocating for kids who feel a little different. She is brave, strong and loving… I’m now in a position where I guide her through this and heed caution when needed. It’s honestly beautiful. I sincerely hope that sharing these low moments are insightful. When we share the good moments that we grasp I hope they are inspiring.

Either way… thank you all for being a part of our world of madness.

I am writing an e-book about food allergies (there will be a few of them because it’s a lot to cover) and she is now a big part of the process. It’s always had to do with her story and our struggles but she is giving me so much insight and perspective from her point of view. I love that I can include that. 

 

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We are told from the moment we become pregnant how important nutrition is during pregnancy and those first few years. A developing person needs nourishment to thrive and starting that out the right way is important. Studies have proven that good nutrition is essential for brain development.

But, what if those options just aren’t there?

Lack of Nutrition is a Horrific Feeling

My personal connection with lack of nourishment concerns and a developing child come from my daughter’s infancy years. When I was nursing her at one month old she broke out in hives and showed anaphylactic reaction signs. I went on a strict elimination diet trying to figure out what the culprit was. It was many. It sucked.

She had over twenty food allergies and many of which she was contact sensitive to. Her doctors worried about how she and I would thrive. Our food was limited: rice, some veggies, some meats, some fruits. A lot of supplements were not allergy friendly. I spent a few months physically feeling ill, run down, terrified and just going through the motions of the day. My daughter was thriving for the most part but she was unusually lethargic… she was getting more nutrients from me through my breast milk than I was getting on the limited diet.

Me being who I am I brushed off my concerns with humor. I joked that all the food allergy madness and limited diet meant I was going to drop all the baby weight fast.

Truth is I was absolutely terrified.

That changed when I was able to find a balance within our limitations and we found supplements that worked for us and the sluggish days became a distant memory. I stayed on her diet so she was able to breastfeed and it became easier.

We were fortunate to have options and found solutions.

At the time it was frightening and I could not imagine if that was our daily terror. Again: We are fortunate.

Many pregnant mothers and children aren’t that fortunate even though they are capable of eating anything their hearts desire.

They just don’t have it available.

We are all aware of world hunger issues and how many live on basics. Foods like wheat, rice and maize that have little nutritional value can stop someone from starving to death but won’t have the essential nutrients a body needs.

This is where an organization like Future Fortified steps in and is creating a sustainable solution. We may not be able to provide billions of people a gourmet seven course meal every night but we can help them get the essential nutrients to lead a healthy lifestyle.

About Future Fortified

“Future Fortified is a new kind of philanthropy, focused on long-term, sustainable impact. Your contribution will be leveraged as an investment to increase the supply and availability of home nutrition packets, as well as educate families on the importance of nutrition and essential nutrients.”

Please take the time to check out Future Fortified. See what impact they are having in the world and follow them on Twitter and Facebook.

You may not have a monetary donation to spare at this time but spreading the word on this amazing campaign is worth it’s weight in gold. Help me spread the word and share this post!

Disclosure: I wrote this review while participating in a blog tour campaign by Mom Central Consulting on behalf Future Fortified. To thank me for my contribution, Mom Central donated $20 to the Future Fortified campaign.

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I’ve felt that one of the biggest struggles with raising children is teaching them selflessness in this instant gratification society. It can be a scary concept for children to know some of the struggles around the world but it can also be a wonderful tool for growth.

Even in the hardest economic times we should set aside what we can to give back. It’s good for us and especially our children. That cycle of selflessness starts with us and we pave the path of philanthropy for our children.

It’s especially important for our family to be involved with giving back since my daughter has regularly received the benefits of non-profits that help children who are chronically ill. We want to give back both to those organizations as well as others in different ways.

We are actively involved in community service and it is a huge part of our family dynamic. Sometimes it’s as simple as buying a $5 gift card and taking it to the women’s shelter or sometimes it’s as large as organizing a fund raiser for Japan Relief.

We are always looking for different ways to help. It’s really hard to find a connection with causes that seem distant from us. I want my kids to understand that they can make a difference with a simple act and it can amount to great things.

Then I was introduced to Members Unite and felt this was another amazing way for us to help.

Members Unite is a great way to fund projects. The decision on what to fund is in the member’s hands. As a member you vote on different projects which are all very unique and interesting. I’ve never even heard of some of these ideas!

The best part is what both my nine and four year old took from this. I explained what the project was and how our $5 donation is pooled together with hundreds of other members and we, as a team, make a difference. We are able to rate each project as a family and think on what projects we like the most.

There was also great dialog in “losing” if our favorite projects weren’t picked because no matter what someone is winning at the end of the month.

Now that my nine year old daughter regularly earns allowance she told me she wanted to become a member herself with Members Unite so we could be making a double difference.

Some of the topics can be hard like the project to help infants from Guatemala who struggle with pertinent nourishment… but it was also an opportunity to talk about how fortunate we have been to not be faced with that and more importantly, that we can help.

The easiest way to help is to give what you would spend at Starbucks or those impulse purchases at Target. But, to make that donation have a bigger impact on your family you can be involved in a community of giving.

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Post image for Diet Changes for Food Allergies, Autoimmune Diseases and Why My Kid is Tough


This week we went to UCLA Medical to try to get some answers for my daughter’s recent autoimmune flare ups. We have some new directions… but no solid answers.

That’s the thing with chronic illnesses and autoimmune issues. Sometimes there are no answers.

We know what is going on with her body but we don’t know why.

And that is the part that sucks.

Without knowing why we can’t know how to fix it.

So, we shoot in the dark.

What we do know is that there is something causing extreme constipation and then extreme diarrhea. Her chronic urticaria (hives) are flaring up again. Her muscles, joints and bones ache. She is getting dizzy a lot, fatigued, doubled over in pain and sleeps a lot more than usual.

Not exactly what a nine year old girl is supposed to be experiencing. [click to continue…]

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Post image for Selflessness and Seizing the Moments with Childhood Chronic Illness

When you have a child who has chronic illness and chronic pains it breaks your heart to hear her utter, “I’ll be fine. I’m just sad if anyone misses out because I’m always sick.”

My daughter told me that twice last week… and her being so selfless and worrying about others when she is missing out on something amazing is truly eye opening.

For the first year my daughter was planning on participating in the school’s Talent Show. She worked her little butt off for this. Every year we participate in Ondo Dancing in the Japanese Obon Festivals with friends. It’s a big part of our summer kick off traditions. She loves Ondo! She decided with two of her friends to perform the dances for their school while dressed up in Yukata.

This was a big deal for her. It was the first time we committed to this event because it sucks when she can’t follow through when she has flare ups.

It’s always so unpredictable.

At first I thought it was a gnarly stomach flu that was going to beat us all up for a day. No, it was a gastro intestinal issue that is common for her but this was really bad.

She was in so much pain that walking hurt, she was getting dizzy spells and extremely fatigued.

Her biggest concern was not being there for her friends or if the performance wasn’t going to go as smoothly with one missing. She wasn’t sad for herself for missing out. She was sad for letting them down and any upset that could cause them.

On Saturday I was invited back for a Blogger event at Knotts Berry Farm which is one of our favorite places to go. When my daughter realized that she wasn’t going to feel up to it she began to worry that I wouldn’t be able to go because of her.

I do not make a big deal out of things changing or express upset over it. I’ve canceled night’s out, family gatherings, playdates, work obligations and many many things when she needs me and we make the most of it.

It’s just how our life is and her health comes first.

It’s just me here for her and I’d rather be here for my daughter than anything else. That is what we both need.

She insisted that I went. The plan was for her little brother and I to go and she would sleep in and meet up with us later with a friend if she was able. I knew if she was able that we would need to take it easy and go at her pace.

She made it for a few hours and we made the most of it. She is a trooper. She powers through things that most can’t and I am proud of her for that as well as thankful that she knows her limits.

Maybe I seem like a terrible Mom to let my kid go to an amusement park after days of feeling ill. But, it’s not a cold. It’s not something that is going to go away. This is her body and a cycle we adjust to. She can go weeks of feeling wonderful and then weeks of feeling horrible.

Sometimes her windows of feeling great are a couple hours.

She had that window on Sunday and it was a beautiful day. She just wanted to be out in the sunshine and garden.  I love that she embraced that moment.

In those windows of feeling amazing I want her to do what makes her heart soar and forget, just for a moment, that she gets sick.

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Post image for Mother and Daughter Event Thanks to The Starlight Foundation and Forever 21

The Starlight Children’s Foundation provides us with amazing events in their Great Escapes program. They are a non-profit that helps children with chronic illness. This organization has been a huge benefit for my daughter where she is able to get some special attention and have opportunities that may not otherwise be available to us. At these events we connect with other families that are struggling with special health needs and she is able to connect with other kids that understand what it’s like to be sick more than the usual cold.

The past event was our favorite by far. It was a Mother and Daughter event sponsored by Forever 21 and they went all out for us! We were given make overs… they did our hair, makeup and nails. We were given a shopping spree and had a consultation with a personal stylist (I really freaking need it). We also had personal shoppers with us and that made my daughter feel extra special.

I'm in Mid-Hair Makeover

My Lil Fashionista

The Make Up and Hair Station

My Daughter's Hair Stylists

When you have a child who’s life is faced with obstacles and hurdles because of their health issues it’s wonderful to have events like these.

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Post image for Life Challenges, Chronic Illness, Home Schooling and Ninja Kicking

Kid’s should be able to run wild and free…

and us parents hope that they won’t fall, bruise or break.

They should laugh so hard that it seems to hurt…

and sharing that laughter with them makes us young again.

Children should have endless energy, don’t have the weight of the world on them and nothing but hopes and dreams consuming them…

Except if that child is chronically ill.

That child may not be able to run and if they do the bruises or breaks within their bodies already exist.

They may be in too much pain to laugh… but they do anyway… because that laughter will help them feel like any other child… even if it’s only for a moment.

She is nine years old. She is one of the most loving, caring and giving children out there. I’m not saying that because I am her Mom. It’s what defines her even when she has bad days.

What defines her isn’t her life threatening food allergies, auto-immune disease, gastrointestinal disorders or her achy muscles and joints. She shouldn’t be defined by her illness but it’s a fight.

I fight for her in so many ways. I fight for a normal life that she deserves.

Just figuring out what defines a “normal life” is a challenge in itself.

I want to see her have a life filled with more energy, laughter and acceptance. I know I can’t make all of her health hurdles vanish. I can’t heal wounds that even her doctors can’t figure out. All I can do is what I’ve always done… and make the most out of the cards we were dealt with.

She is too tired to make it through most School days but she continues on so other kids don’t notice she goes home early often. She tries to control her bladder and bowel issues at risk of having accidents because she is tired of other children making fun of her using the bathroom so much. She has kids at school mocking her… they think it’s funny to threaten her with the foods that can cause her to die.

I’m fighting for her to have that kind of life?

I’m not angry at those children. They don’t understand the magnitude of death…

Unfortunately, my daughter does.

“Childhood is over the moment you know you’re going to die.” – The Crow

She was born with life threatening food allergies and unfortunately has to be aware of that horrible fact in order to keep her safe.

I hate that.

She is nine now and I don’t want her to lose these last precious years of childhood sucked up by her trying to just make it through the days.

What kind of life is that for a child?

We are moving forward with Homeschooling. It’s not a new concept for me. When she was a baby I thought we would be a homeschooling family. We have home schooled during times when she didn’t have the energy to attend school…

Now, we change our lifestyle so she can have the energy to live a full life.

The goals in our battle for her life change now. There will be judgment, negativity and adjustments. It’s going to be really freaking hard to juggle all that I do now as a single Mom plus homeschool.

I say bring it on… cause we are ready to ninja kick some more obstacles out of our way.

And despite my daughter’s body being frail at times… that little girl has determination that no one can mess with.

Which makes me worry about her teen years… but that will be yet another obstacle to face later.

Much. Later.

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