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I just paid for a birthday party for an 8 year old boy I’ve never met.

It's been a rough 6 months in my little corner of Texas. I've been hospitalized five times for pneumonia, two of my friends (spouses) died 17 days apart. Both were traumatic, unexpected and just plain sucked. I live 800 miles from them, so I missed both funerals, which broke my heart.

When I got released from the hospital last week, my BFF/cousin texted me that she was about to be admitted to a hospital in the town she lives in. She was 25 weeks pregnant with my nephew (her kids call me Auntie Em) and the baby had just been diagnosed with something called fetal hydrops, which is a very serious and usually fatal.

John Edgar Brooks was delivery through an emergency csection at the exact stroke of midnight on August 10 and passed away shortly thereafter. His few minutes on earth were damn good ones, being snuggled with his dad until he passed away, wrapped in love.

Between the three deaths an five bouts of double pneumonia, I'm … numb. So much death. So much pain, both mental and physically. I felt horrible about not being able to fly to my cousin's house to help out like I wanted to, but my lungs are still rebounding from the last bout of pneumonia.

I recently stumbled onto a website called One Simple Wish, which provides wishes from kids in foster care. It's a website I visit occasionally, but had never donated to before.

This evening I was scrolling through their website and one wish caught my attention… An 8 year old boy's request caught my attention. His request was for a day at LegoLand with his friends to celebrate his birthday. He had never had a birthday party before. I scrolled past it, even went to use a couple more apps in my phone, but I kept returning to the request.

So I granted his wish.

I feel much happier now, knowing that I could help someone, even if it wasn't my friends or my nephew. I made a difference to one child's life.

And that made me smile, really smile, for the first time in many weeks.

Hey Evan, I hope you have the best birthday ever.

In honor of:

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Hug a nurse. Right now. 

A nurse saved my life last week. Another nurse saved my life this past June. Yet another one saved my life in January 2016. How did they save my life? They paid attention to the small details, such as my oxygen levels or exactly how medically dehydrated/malnutrished I was. These details are the kind of thing most doctors don’t pay close attention to.

I’ve complained a lot about nurses over the years. Like everything in life, there are 9 good ones to 1 bad one. I’ve had my share of terrible nurses, but I’ve also had my share of fabulous ones. 

Last week a nurse in the ER insisted that I be admitted to the hospital, even when the doctor decided I was fine to go home. It was “just a virus.” If the nurse hadn’t intervened and backed me up when I told the doctor there was no way in hell I was going home, I would probably be on a ventilator right now, or worse.

In June a nurse ran an additional blood panel for me when I was hospitalized for an infection, because something didn’t seem right to her. I’m not sure if she got in trouble, but she figured out I was septic before any doctor did. 

In January 2016 a nurse saw me stumble into the ER, barely able to breathe due to some sort of asthmatic and brochial spasm, and within five minutes my port was accessed, I was pumped full of steroids and ativan and I was suddenly able to breathe without any effort from me. 

Nurses get looked over in favor of doctors… I can’t say how many times a nurse saved me or a friend/relative of mine, but the doctor took the credit. Remember, when you’re inpatient in a hospital the nurses are there 24:7, but a doctor is there anywhere from ten to 30 minutes, on average. 

So thank a nurse. Right now. Go. 

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Persistence

I spent the day in the ER and a couple hours ago I was admitted to the hospital. Here’s my story:

Woke up with a fever. Fortunately, I already had a previously scheduled doctor appointment with my main doctor. By the time I got to the doctors office I felt awful. The 102.4 fever had settled into my neck and was making me nauseous. Because of my recent blood infection episode we decided I needed to go to the ER for cultures, to cover our bases. We also thought I might have an UTI, maybe. 

So I went straight from the doctor’s office to the ER. Waited an hour before they called me to the triage room. 

When I was triaged, I mentioned the UTI history, which is probably why they put me in the quick care tract. 30 year old woman with an UTI, so treat and discharge her with a week worth of Bactrim. Then the doctor came in and realized that I had a fever and a history of sepsis, so he moved me to the ER acute side. We discussed, at length, my medical history, including my history of sepsis. We had a plan: blood cultures, X-ray, zofran. I was miserable and it sucked. 

When they tried twice to get an IV and failed, the ER doc came in to send me home because I “looked fine.” 

I thought he was joking. Nope. So I asked if he had looked at my chart or X-rays he had taken, he shrugged and said no. I refused to leave without answers, so he begrudgingly agreed to get a nurse with an ultrasound to get blood out of me. On his way out the door to write the orders, he said, “By any chance do you have a history of sepsis of any kind?”

I really thought my head was going to spin like the girl did in the Exorcist. 

They finally got blood and an IV placed, giving me some fluids and the miracle medication, zofran. 

My WBC count was 18.

Diagnosis: double pneumonia. The X-ray looked like a bomb exploded in my chest. How I am still breathing without complications is beyond me. Explains why my rib cage hurts. I thought it was from wrenching. Wrong. I’ve already had two doses of antibiotics and my fever is down and I’m already feeling halfway human. They said I’ll be here for several days. I really hope they’re wrong, because this sucks. 

But the only reason I was diagnosed was because I persisted. I didn’t take no for an answer. Without treatment, I was probably would have gone septic in a day or two. 

I’m so glad I persisted to get the answers to make me better. 

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Let’s get real about infertility.

In 1999, I had an abdominal surgery to rebuild my bladder out of colon. While I was in there, they removed my severely deformed and non-functioning uterus.I was  twelve, still a kid in some ways, but I knew what it meant: there was no way I would be able to give birth. I was okay with it. Once again, I need to mention I was 12.
Then I got to meet the guy that is now my husband. He knew from the start that bio kids were out of the question and was fine with it. However, at one point in our engagement I sat him down and gave him the chance to bail, telling him I wouldn’t blame him if he wanted something I could never give. 

He looked at me like I was insane… maybe I am. He told me he fell in love with me and never even considered what baggage I came with. 

When people hear I can’t reproduce, they get these sad eyes. Some people don’t say anything, but some people get quite vocal about it, telling me this was “God’s will” and “it happened for a reason.” Okay then. I rarely argue; I just smile and walk away. 

I’m at the age now where all my friends are having kids and flooding Facebook and Instagram with adorable pictures. I love it, but I hate it, if that makes sense. I’m happy that my friends have cute kids, but I hate that most of them did it the cost free “natural” way and if my husband and I want kids (and we do, a bit more down the road) we have to pay $30,000+. 

While I have you here, let me give you some tips to be a great friend to the fertility challenged:

  • If you have kids, don’t let every conversation with you mostly about all them. 
  • If your friend needs to vent and cry or whatever, let them. Just sit down and listen. 
  • Understand that not everyone can go to baby showers, so don’t be offended if your friend declines to participate. 
  • Don’t freak out if your friend freaks out about your pregnancy/new baby, especially if you’re very close. There will be a new chapter in your life that they won’t have and they are sad about it. They fear your friendship may decline as you find yourself becoming friends with other moms with kids your age. 

This is just a short list, so I’m hoping those reading this can give more insight in the comments sections. 

Infertilite women: What do you need from your fertile friends? What support do you need? What don’t you want to hear?

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I went through school being bullied, and I wish I would have spoken up more about it. 

I’ve been bullied, on a regular basis, most of my life. It started in preschool, and from a young age I just presumed it came with the package when you’re barely 4 ft tall, missing a finger and in clothing designed to accommodate catheter bags and other lovely attachments.

As a kid, the bullying was sporadic, but it never went away. Ever.

At first, I tried to turn the kids ago made me feel like garbage into the teacher, like I was told to do. It actually made it worse, so I stopped.

By high school, I was pretty much silent on the subject. A few things got reported – one by a teacher who witnessed an altercation – but for the most part, it rarely was spoken about.

I would like to note that I was bullied for more reasons than just my health. I was a quirky kid who loved I Love Lucy reruns, George Jones music and I didn’t give a damn about much of what people in my class thought as “great.”

When I was maybe 10 years old a kid a few years younger called me a handful of lovely names. I reported it. Later, his mom drove him to my house to defend him. I sat there and listened.  Shortly after this I was given an extra bonus – thanks to a marriage in my family, I’m now technically related to him.

It was one of the last things I ever reported.

I kept my mouth shut when I was 13 and had a minor bladder event (it had been custom made for me a few months earlier and I was still breaking it in) and a group of “friends” made fun of me the moment they found out what happened. (I would love to name names, but I was raised better than that. Also, lawsuits.)

I know someone who was bullied for her physical disabilities who tried to overdose when we were in high school. Thankfully, someone found her and saved her. When I told my dad about what happened, he asked me if I ever felt like doing the same thing. I said no, which was the truth at the time. Several months later I did, for a fleeting moment, consider it. Then I remembered that death is permanent, and being treated like crap is just temporary. With that said, I can absolutely see why some people would see this as an option for them, especially teens. They’re trapped. They’re done. They don’t see a way out of their educational system, dysfunctional families or what they would call an awful home life.

I’ve been watching 13 Reasons Why on Netflix and it’s pulling at my (defective yet perfectly functioning) heart. Although I never went down the path Hannah does, I totally understand her and her actions. I know she’s a fictional character, but I identify with her, especially at the end. The school system failed her.

The school system failed me as well. To them, I was a number, a statistic. Yes, I had plenty of medical policies, like an IEP, but except for a handful of teachers (two who were a family friends), it was up to me. I may be a wisecracking broad now, but back then I let a lot of things go that I probably shouldn’t have.

Example: In high school, there were two separate indicents of two different people taking medication from my bag. One person got the good stuff given to me after a recent major surgery, but that other idiot got my bladder relaxers, which I hope constipated them both. I saw it happening both times and both times I let it go. It was easier to stay silent than to raise hell.

I’m aware that Hannah isn’t real and that this is a cliche, but I want to tell girls like her that it gets better. Being different isn’t wrong.

I’m 30 years old now. Been married nearly six years, I get to do my dream job and my health is (mostly) in check. It got better for me, and I’m happy. If I would have gone through with that fleeting idea, I wouldn’t have the life I have now.

Just hold on, girls of tomorrow.

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Dear Doctor Outside My Door

Dear Doctor Outside My Door,

You have got to be kidding me. You have a  brand new doctor cornered and you’re giving her hell in a very public way about something that wasn’t a huge deal. Yes, I know, you have to be “vigilant” and “weed out weak ones.”

I get this and, as a patient, I appreciate it very, very much. But stop being so damn power hungry. You’re a huge Gaston like man and the physician you are making making feel like crap is a woman who is less than a hundred pounds soaking wet.

Her mistake was real – screwing up converting medication dosages is a serious problem, of course it is – but the mistake wasn’t fatal. No permanent damage. Move on before I leave this room and make you move on.o

My damn esophagus · Uncategorized

Yep, I’m a B*tch. (And I’m perfectly fine with it.)

I had surgery this afternoon – a routine esophageal procedure that keeps me from being able to eat solid food. I like solid food. 

Because I am allergic to so many meds, I make the person pushing the anesthesia through my IV tell me exactly what they are giving me and how many milligrams each medication is. Usually they are very understanding of my request, but occasionally I encounter pushback, like today. 

So I had to be a b*tch about it. And I’m more than happy that I did, because they were planning on giving me a medication that makes me violently sick in every way possible. 

My dad told me something a few years ago that has since stuck with me: yes, I may be a total b*tch sometimes, but being a bitch is what has kept me alive… and I’m not sorry about it. 

  • I will ask questions. 
  • I will insist on explainations. 
  • I have zero problems with medical students learning on me, but if they’re not skilled enough I will make them stop. 
  • Same goes with other medical staff, from the doctors to the nurses to the lab techs… if I think that someone isn’t skilled enough, or is rude as hell, I will insist that the person be replaced.

I am the CEO of my body. I decide the people my body may work with and which ones can’t.

I’m not just a b*tch. I am a survivor.