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Hitting a Rough Patch

Hitting a Rough Patch

I was keeping up with everything. The laundry was washed, blog posts were getting written, and the house was clean. Looking at my blog, you might think I vanished into thin air. Those who followed me regularly were left scratching their heads, “what happened in June 2017?” I never forgot about the blog, or all of my readers. In fact, I missed you dearly. It’s time to share what brought me to a place I couldn’t post for a year.

Our son was doing well. All of his medical appointments were three to six month follow ups and keeping up with the house just wasn’t a challenge any longer. We found a daycare about ten minutes away willing to take a child with a feeding tube for four hours three times a week. They reassured us they were comfortable running his tube feeds, they had done it before for other children, and that they were able to give him the attention he needed. We had a plan and it was as solid as such a plan could be. With that, I took a part time job close to home. The arrangement was I would be in the office while my son was in daycare and work from home for the rest. I couldn’t have asked for a more flexible work arrangement.

As often happens with children who haven’t been exposed to illness outside of their home, our son got sick. Each time he recovered we took him back to day care. I’ve never seen a kid catch so many colds. Some of the colds made him sniffle, others made him cough, and all of them gave him a fever. I started working from home a lot. It wasn’t ideal and it was significantly more stressful. I told myself to hang in there. This is normal, I thought, and once he worked his way through being exposed to so many other children he would settle in and enjoy day care.

Just like in early 2014 when this journey began, things did not work out as planned. Frankly, do they ever when kids with medical needs are involved? After six weeks of continuous illness, we took our son to the pediatrician for a variety of tests to make sure he hadn’t contracted something worse than five or six different rounds of the common cold. He hadn’t, and the pediatrician wasn’t certain why he didn’t feel well. A few months later we would receive a full explanation. I’ll spare you the waiting. This bout of illness kicked off an autoimmune reaction to our son’s blood platelets called Ideopathic Thrombocytic Purpora, or ITP for short. You know how people tell you that all those illnesses your children catch when they start school or daycare are just strengthening their immune system and won’t hurt them? The vast majority of the time this is absolutely true! This time we didn’t fall into the vast majority.

I held on for a few months through weekly hematology visits and lab draws. Other things came up also which I’ll cover in future posts. I resigned my job and went back to being a stay at home Mom. I’m glad I made the attempt. I hope to give it another go in the future if the opportunity presents itself. In the meantime, I’m making every effort to keep my feet under me this time around.

Keep an eye out for future posts to hear more about else what happened in the last year. I’m writing and publishing the story in pieces in case things come up along the way that prevent me from posting regularly.

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4 Spring-Inspired Stress Relievers for Caregivers

This is a sponsored post for Vive Health. I have been compensated for sharing it with you. All opinions remain my own and I was in no way influenced by the company.

Don’t worry, this post isn’t an ambiguous guide to caregiver stress relief with vague tips like “Try not to stress so much.” Caregivers know that fighting stress and anxiety is key to maintaining mental and physical health – so you can stay in tip-top shape to take care of your loved one. It’s easier said than done, however. Get inspired with these 4 real-world, practical ideas that can truly get your spring off to a bright and stress-free start:

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PTSD Symptoms and Support Organizations

After airing my podcast reading of a previous post about PTSD I was asked to gather and provide more information about PTSD symptoms and support organizations. I’ve thought long and hard about how best to cover this information. After all, people who are suffering from PTSD need professional help. Self-diagnosis isn’t reliable and it’s difficult to comprehensively describe any medical issue, much less a mental health issue, on a website with such a broad international audience. The approach I’ve decided upon is to aggregate the information as concisely as possible. I strongly advise anyone who believes they might have PTSD to seek the assistance of a therapist who has experience treating someone with PTSD.

If you are in need of immediate assistance call 911 or go to an emergency room. This post is for informational purposes only and is not a substitute for medical care.

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Munchausen Syndrome by Proxy

Munchausen Syndrome by Proxy

There is a lot of misunderstanding out there about Munchausen Syndrome by Proxy (MSbP) including what it is and what it’s not. It’s a tough topic and an important one to understand with the government being more involved in our lives and parenting decisions than ever before. Accusations – true or false – have the capacity to break up families and destroy relationships.

MSbP is a condition where a caregiver makes their charge sick to gain some reward. The reward may be attention, sympathy, validation, or anything else the caregiver receives in return for their patient being ill. Typically, the relationship involved is that between a parent and child. MSbP is considered to be abuse. Harm undeniably comes to the recipient of the abuse and cases of death have been reported.

This syndrome is not poor parenting. Disagreeing with medical professionals or getting a second opinion does not indicate MSbP. Those things can undeniably place a child at risk when taken to the extreme, but a label of Munchausen Syndrome by Proxy is inappropriate. The words we use matter.

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ALMOST Time to Get Your Flu Shot – but Not Yet!

ALMOST Time to Get Your Flu Shot – but Not Yet!

It’s flu shot time again. The CDC has key facts on their website about the shot if you have any health-related questions. There are a few places you and your family can get their flu shots.

  1. Most pharmacies are offering them on site.
  2. Your child’s pediatrician may provide the shot through a nurse visit which I’ve found to be both faster and less traumatic for my son.
  3. The Dr.’s office is also an excellent way to get it if you’re already going in for something. They can just give you a dose while you’re there and have it over.

It does take a little while to provide protection so you’ll want to get your flu shot sooner rather than later. However, you may want to wait until at least October before getting the shot. It’s especially important to hang on a little longer if you’re over 65. See the NPR article for additional details.

Yes, it is Possible to Get Your Flu Shot Too Soon – NPR

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Why Every Circle of Friends Needs a Medical Mom

Why Every Circle of Friends Needs a Medical Mom

Medical Moms are awesome! Every circle of friends needs one. They’re reliable when it matters most and the time they spend with their friends means the entire world to them. Here are even more reasons why EVERY circle of friends needs a Medical Mom!

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What Does Self-Care Mean to You?

What Does Self-Care Mean to You?

This is a sponsored post for the Self-Care Movement. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by the company.

Above all, as caregivers, we need to take care of our needs. To me, self-care means doing the things I need to do for myself that enable me to continue to perform well as a caregiver. Self-care includes things like showering, eating at least two to three meals per day, exercising daily, and getting enough sleep. It also means treating myself to coffee when I have a spare few minutes, having my hair cut, and taking care of my nails. Doing everything that gives me the energy required to recharge my batteries and make it through those long days.

When we first started struggling with our son’s medical difficulties, I thought it would be best to sacrifice my needs for his. Day after day I continued to do less for myself than I needed. Eventually, I was so tired I couldn’t even do basic math calculations in my head. Finally, my husband realized the desperate nature of the situation. He stepped in to make sure I got enough sleep and had time to eat at least once a day.

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Coping Without Addiction

Coping Without Addiction

We all have our struggles. Parents of special needs children and caregivers have more than most. Looking for a crutch is tempting. A little something to lean on sounds like such a relief. There is no easy fix to your problems and leaning on addictive substances like painkillers, alcohol, or other drugs has consequences. These things may make you feel better in the short term, but long term it’ll sink you.

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Live Happier. Here’s HOW.

Live Happier. Here’s HOW.

I don’t reblog often but this post touched me. I hope it lifts you up as much as it lifted me.

thehappylife101

I want to share with you 4 key points that I have learned in order to live a happier life. Believe me when I say that I am still trying my very best to adapt these everyday, and sometimes I fail, but what’s important is I don’t stop trying =)

1. ACCEPTANCE

“I’m okay with what I ultimately can’t do, because there is so much that I can do.”-Sam Berns

It’s our automatic response to make excuses when we are afraid to fail at something that we really want to achieve in life. We can come up with all the reasons that hinders us from doing what needs to be done. But we need to be bigger than our limitations! We should focus on the things that we can control and change.

2. GRATITUDE

“We have a choice. Either to be angry for what we don’t have, or be thankful for what we do have.”-…

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What to Do When Emotional Pain Turns Physical

What to Do When Emotional Pain Turns Physical

It’s probably safe to say by the time you become a parent you’ve experienced this phenomenon. Your emotions become so overwhelming they cause a tightness in your chest and abdomen. “Tightness” doesn’t get anywhere close to describing the feeling. It definitely brings awareness of how the person was feeling who initially coined the phrases “heartache” and “gut-wrenching.” The discomfort is, quite frankly, horrible.

No one fully understands yet why this happens but the why is only tangentially relevant. The real question is, “how do I make it stop?” The physical pain is wired directly into how you feel emotionally. The only way to stop it is to calm the emotional pain. There are a couple things you can do to relieve some types of mental anguish. Keep in mind that traumatizing events like losing a loved one may not respond immediately or they may get better only in small increments over many years.

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