Not Seriously Ill, but Chronically Ill (A Rant)

Updated on December 22, 2011
T.S. asks from South Weymouth, MA
9 answers

My 5 year old son just had his 24th visit to the pediatrician this year. In October he was diagnosed with a possible chronic illness called CRMO. The great news is that it is not a serious illness. However it is chronic, on average lasting 5 years. So basically I think we can expect to see fevers, often unexplained, and some bone and joint pain. So yesterday his fever spiked to 103, and he was all heart broken because he would miss his school Christmas party. He has already missed the Halloween party, pancake breakfast and a handful of birthday parties. He laid himself out on the family room floor and feel asleep for most of the afternoon, at times asking to be helped or snuggled - heartbreaking for a mom. Meanwhile, I was frantically trying to reschedule conference calls for the next day and switch the babysitting situation since he wouldn't be at school. I asked my husband to come home from work early, which in his mind he did by being there at 6.45 instead of 8. I spent much of the night in his bed comforting him through the fever, so I am exhausted today. I feel guilty getting all wrapped up about this being difficult because he is in essence fine. But I am digging deep to get through these episodes, which happen on average once every 15 days. Anyone else in a similar situation?

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answers from Dallas on

I am the one in my family chronically ill and it is hard on my hubby and kids. I can't offer any advice but wanted to tell you I send you empathy and energy vibes

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answers from Boston on

Please accept my hugs for support. Chronic illnesses challenge everyone in the family and must be very difficult at this time of year. I hope you get some sleep tonight and take care of yourself regularly, even if that means asking for more help from family and friends than you are used to. Your health, strength and sanity are not only important to you, but to your son. Blessings.

4 moms found this helpful


answers from Seattle on

I am the Chronically ill person in my family.

It sucks. I can not plan on going to far from home for too long.

I have stomach issues on top of Celiac and a few other Autoimmune issues.

I can only imagine being in your shoes. My husband has sat at my side while in the bathroom sick as a dog. It is a scary place to be I am sure.

You need to take care of you and venting is a good way to do that. It is hard to remember that the Chronic part of this is how things will be. Because in that moment it is pure awful. And hard to see past that.

Get some sleep and strive for the days he does not have the fevers and aches:) Cherish those ones:)

3 moms found this helpful


answers from Charlotte on

T., you've gotten some sweet comments from the ladies here- my best to you in managing his illness.

In addition to the lovely remarks here, I want to encourage you to please consider talking to the doctor about how to manage the psychological aspects of this for your son. There are important things to consider for him, T.. If you baby him too much, he will feel like he will be a weakling who can never do anything. The opposite is just as bad. The doctor can talk to you about how best to strike a balance.

All my best,

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answers from Seattle on


My son has serious breathing problems. Most of the time he is FINE. 100% normal / healthy, no problem.

But his O2 levels drop several times a day (easily fixed), and rather randomly he'll just crash.

I have a note in my blog of our first "calm" week after 6 months of being in and out of the hospital (sometimes for weeks on end), and after about 3 months at home. We *finally* got his breathing stabalized and a med routine that works. I look back on it sometimes and chuckle. We only had 3 trips to the ER that week! And we got to go home, every time!!! "Only" is what makes me smile. And we'd gotten so used to going to the ER and getting admitted, we just kept bags packed by the door, and lobbed them in the car. My son actually had his own 'hospital bag' (a stuffed friend or 2, a few things to do, cool PJs) that he just brought with him. Touch wood, we haven't been to the ER in 2 months.

Well... UNFORTUNATELY.... part of the med routine that works is steroids. We've gotten off the oral steroids, but the inhaled ones give him MASSIVE insomnia. We're talking it's regularly 2am, and 4am, and 6am until he's asleep at night. And noon waking times (believe me, we've tried several things that just don't work... we're stuck with the insomnia).

((LOL... and just for the humor of it... we also have a Hitatchi Magic Wand that's his. Yup. 9yo with a sex toy. It's nearly identical to the vibrator used by respiratory therapists, but only costs $100 instead of thousands of $.))

So we miss out on a LOT of stuff, because he's not awake. Most of my friends I made at the hospital lost their kids :( Some are still around (CF and chemo kids mostly). I am HUGELY blessed to still have my son in my life.

But it's one of those weird things. We have a gazillion doctors appointments, we miss out on a ton of things... but in general... I've got this "healthy" happy kid who can lead a really normal life most of the time. Which is GREAT!!!! But it's weird. Because he's not actually healthy. And because he's not healthy, we have a lot of side effects from that.

Fortunately we already homeschool, or we'd have to have started (no school has 1pm start times, and he would have missed 3-4 months of school last year... so repeat the grade and STILL not in school just wouldn't fly).

It's just a strange dichotomy. Most of the time things are FINE, but when they're not, they're not.

And well intentioned idiots try giving a lot of advice about things to do/try (like ditching his inhalers... umm... no. I'm fond of my son being both alive and NOT having brain damage, thank you very much). I swear, if I hear "You need to / You should" out of anyone's mouth concerning my son's health who does NOT have breathing problems (copd, asthma, CF, whatever) themselves or their kids do... I may just stick my tongue out at them or make a monkey face and dance around. I'm that over it.

There's not a lot of understanding amongst others, when things are just "different".

I get a LOT of comfort from other parents in the same position. If it wasn't for being able to laugh about the silly / hard stuff (that would make non med-kid-parents recoil in horror/OMGs)... or being able to just sigh and get a little support when they're (the kids) are mad at US (because we can't fix things), or they're sad to miss out on things... I would not so quietly go insane.

And, odd as it is, it's HARDER when things are mostly fine. When he's hospital sick... I'm in survive mode AND I'm surrounded by other parents that just GET it. Tons and tons and tons of support.

But at home, when he's missing out on a party, or we have to leave something early, or we can't do this cool thing because of a doctor's appt. When I'm on my own and alone feeling bad for my kid, or swamped in mom-guilt (x2, because -touch wood- he's FINE, vs hospital sick)... that's the hardest.

So you're not alone!!! We're out here! A little 2D on a screen instead of in person to swap stories with (Has YOURS done x,y,z, yet? Don't you love it when they _______)... but we're here.

3 moms found this helpful


answers from Albany on

It's a profoundly helpless lonely feeling when your child is sick. Gotta be the most intense stress of a lifetime.

I hope you are being good to yourself Mom. I hope you have some help, too.

Sending you and your little fella many prayers, and very much strength to you. In fact, I will say a prayer to St T., BOTH of them, just in case, to guide you (and me too!).


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answers from Portland on

I was the chronically ill person in the family growing up. In hindsight, my illnesses around the holidays actually had to do with the eating of too many holiday treats. There is a diet called GAPS that I would encourage you to check out, as this may well be the missing piece of the puzzle for your son. Many people with autoimmune conditions (myself included) have reversed their diagnosis with this plan. It's a temporary diet designed to heal the gut, not a complete lifestyle change.

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answers from Minneapolis on

I have not been in a similar situation, and my heart goes out to you and your son. It is the hardest thing ever to watch your child be sick. I'd rather be sick myself.

As others have said, please reach out to friends, family, neighbors, or support groups for help so you don't wear yourself out physically and emotionally.

This seems to be hard on your relationship with your husband already. I hope the two of you can keep talking about this and not let resentment or other negative emotions build up.

2 moms found this helpful


answers from La Crosse on

I don't have an answer. Just wanted to say sorry to all of you, it has to be so hard on you and him. Its got to be so disappointing for him! I hope you are trying to do some fun things for him at home when he misses out :(

2 moms found this helpful
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