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In Lieu of an Ice Bucket

Anna Mae Furgiuele

I get it. Some of you are growing tired of the videos. Many people don’t get it: Why are people dumping ice on their heads in August? Where’s the challenge in that? Some are getting annoyed: How does dumping water on your head help people with ALS? You’re wasting clean water? Quit showboating and just donate! Others are (ignorantly) angry: Maybe if this was for cancer or something serious, I would see the point. (While I wish I were making up that comment, I read that as a response to someone asking what the deal is with the Challenge on Facebook.)

But, to me, to my family, and to many others like us, this is important. We are an ALS family. Sure, the whole dousing yourself with icy water instead of or as well as donating to the ALS Association is a bit silly, but who cares? The Challenge is raising awareness by encouraging people to talk about ALS. People are looking up information about the disease to find out what it is and to find out why spreading awareness is important. The Challenge is also raising an unprecedented amount of donations ($22.9 million so far) for the cause.

This matters. A lot.

21 years ago, my family and I lost my grandmother, Anna Mae Orris Furgiuele to ALS, also known as Lou Gehrig’s Disease. I was ten years old, and I wasn’t able to fully comprehend what happened at the time, but I knew that my grandmother had been sick. I wasn’t quite sure what kind of sick she was, but I knew that it was rapidly taking pieces of her.  In a few short years she had progressed from being mobile to using a walker to using a wheelchair to bed-bound in a nursing home. She had gone from living on her own in an apartment to living with my aunt and uncle to living in a nursing home.

Anna Mae Furgiuele

One of my last memories of my grandmother is happy-sad. My mom and I had gone to visit her in the nursing home like we did a few times a week. I always hated going to visit her in the nursing home. It wasn’t that I didn’t want to see my grandma, it was because nursing homes are slightly terrifying to an 8-9-10-year-old. I’m sure they aren’t fun for the residents either. The nursing home always smelled like urine. A resident was always yelling or crying or screaming loudly. Someone who wasn’t fully in touch with reality always thought that you were someone that they knew or that was there to see them.

My mom and I were in my grandma’s room for a bit before my mom went to talk to the nurses at the desk. There was always something to complain about or confirm. I was 9-years-old, so I’m not quite sure what was going on, but I knew that my grandmother didn’t always get the best care. The nurses didn’t seem to understand – or care – that my grandmother was still there mentally and fully aware of what was going on. I’m not saying that my grandmother always had subpar care, but I know that it was quite a battle for my family to make sure that she had the best care and treatment.

My mother left me and my grandmother alone for a few minutes, and it wasn’t a big deal. I was used to spending time with Grandma. The television was on, and we communicated the best that we could. At that point, it was getting difficult for my grandmother to speak clearly enough for my 9-year-old self to understand. I struggled to understand the message she was trying to convey to me. I knew it was important because she was determined to get the words out. She spoke slowly and kept repeating words. She mentioned her engagement ring, that she wanted me to have it, that she wanted me to wear it, and something about my wedding. She made me promise that I would take the ring and wear it. It took awhile for me to understand what she was saying. I know that she said more than those bits, but it was upsetting for her and she was crying, having difficulty breathing, and she sounded almost angry, almost yelling as she was explaining this to me. I know that I was getting panicked. Nine-year-old me was afraid that I had done something wrong and that I had upset my grandmother. My mom came back to the room, and my grandmother calmed down, but this memory sticks with me.

As an adult, I can understand that in that moment my grandmother knew what was happening to her body and she realized that she wouldn’t be around as I grew up and got married. I remember the look in her eyes as she struggled to get out a few sentences and how frustrated she was that she couldn’t tell me what she wanted to without scaring me. It’s a memory that gets sadder with time because I’m old enough now to realize what that moment really meant. It’s a happy memory, too, because my grandmother wanted to be sure that she could share something with me to hold onto into my adulthood.

If you have participated in the Ice Bucket Challenge, if you have donated, or even if you have just taken a moment to understand what ALS is, I want to thank you. No matter how silly or annoying this is, it is important to someone. It is definitely important to me.

I challenge you to take a moment today to read the information I have linked in this post, and I encourage you to join me in donating whatever you are able to donate (time, money, etc.) to the ALS Association .

Anna Mae Furgiuele

2013: My Year in Photos

Jack & Nora

I spent a lot of time with these two fur faces.

Polar Plunge

I turned thirty, then I willingly jumped into this frozen lake for charity.

Old job. New job.

I left my job after five years and started a new one.

Let's go Pens!

I went to my first of many Pittsburgh Penguins games. Let’s go Pens!

Run!

I ran. And then I ran some more.

Flying Pig Half Marathon

I ran my first half marathon. Then I registered for my first full marathon in 2014.

Let's go Pens!

There was a lot of hockey. Paul Mart! Kuni! Nealer!
(Yeah, I don’t know how this happened either.)

Bum hip, cat catchers, new toys, craft projects!

Clockwise from top left:
1) I found out that I have a bum right hip, but hooray for chiropractors.
2) My furkids are adorable.
3) Ryan and I attempted to see the Perseids Meteor Shower and got to make this lovely planisphere with a bunch of elderly people.
4) My MacBook Pro was on its last leg, so … UPGRADE.
5) No photo, but I am thankful for heartburn and colonoscopies … and being cancer free.

Color Me Rad.

Ryan and I ran Color Me Rad in Pittsburgh. My blue beard is courtesy of Ryan, of course.

Tattoo!

So, um, I got my first tattoo.

Full Moon Float.

We did a Coal Tubin’ Full Moon Float down the river with a bunch of strangers.

Goofball.

I spent a lot of time with this goofball.

Selfies!

I continued to grow out my hair … and it continued to get wavy.
I have no idea what to do with it, but I’m learning.

Goofballs and bedhead.

2012 sucked. 2013 was awesome. Here’s to hoping that 2014 is even better.

I wish you lots of love, happiness, good health, and adventure in 2014. ♥

Replacement Parts

POP.

That’s the sound my right hip has been making for months now. I stand up from a seated position: pop. I sit down with my knees slightly apart: pop. I finish a run and stretch: pop.

My body has been snapping, crackling, and popping for as long as I can remember. I’m the girl who has had arthritic knees since she was a teenager. So when this new popping started, I didn’t think anything of it. I figured that it just came with the territory (being thirty and having a history of arthritic joints), and that it was just another thing added to my list of things to live with.

Fast forward to after the Flying Pig Half Marathon (post forthcoming). I ran a few weeks later and something felt off. My gait wasn’t the same, and there was just something not quite right with my right hip. It didn’t quite hurt, but it didn’t really feel good either. I let it go for a few more weeks, thinking that it was just due to over training, exhaustion, and whatever else comes with running your first half marathon.

Then the waking up in pain in the middle of the night started. I’m a side sleeper, and when I can’t sleep on my right side, I am NOT a happy camper. Last week, having thought back, trying to remember the last time I slept through the night without waking up in pain, I realized that I haven’t slept through the night since May. Two months of not sleeping through the night is not cool, and something needed to be done. I called a chiropractor and set up my very first appointment.

The assessment was very thorough and informative. They asked a lot of questions, took several X-rays, and evaluated my range of motion. As we went through everything, I was starting to realize how weak and limited my right hip and leg are. (I had noticed that my right foot/leg kind of shuffle when I run, but I didn’t think much of it at the time.) I went back today for a follow up after the doctor had time to review my X-rays, and she went through them with me, showing me the bone-on-bone contact that my right hip is making in the joint and showing me how off balance my hips are (my right hip sits much higher and more forward than my left).

So I wasn’t being a big baby about my pain. It’s a real thing with a real cause!

replacement-parts

Then the doctor said something that I wasn’t really prepared to hear: “We need to treat this now to avoid a hip replacement. You don’t want a hip replacement. You’re a runner. You don’t want one. They’re painful, and they only last for about ten years before you’ll need another one.” No, I don’t want a hip replacement. I had tears in my eyes when she said this (and as I write this) because this was the first time I had ever considered the possibility of my not being able to run. Right now I have the choice to run or not to run. I have a choice.

Right now I’m struggling with running. Part of it is because of the pain I endure after the run, part of it is because of the weather (storms or heat – I can’t win), and part of it is because I’m struggling with some issues about my training process (post forthcoming). Realizing that running is my choice really put things into perspective for me. Of course, I’m not allowed to run for at least two weeks. Doctor’s orders. And what do I want to do? Run.

If I don’t treat this now, in the future running might not be a choice for me to make. My doctor walked me through a treatment plan and explained how it will add more “space” around the joint so that the pressure will be taken off of the joint and I will be able to run pain free. It’s a pretty intensive plan: treatment three times a week for four weeks, then two times a week for four weeks, then either once a month or once every six weeks. All I have to say is that I am thankful to have insurance that covers this treatment, that I found a doctor that I like, that my doctor is confident that this can be treated through therapy instead of surgery.

Often we forget that most of the time we have the option to make choices, but sometimes we don’t have options and the decision is made for us. Universe, thanks for the reminder.

Thirty

Last week, I turned thirty.  Here are some things I’ve learned over the last thirty years.

  1. When in doubt, turn it off and back on again.
  2. Most events in life can be summed up with a reference to Friends or Seinfeld. Moo. Moops.
  3. Hair is hair, and it will grow back. Chop it off at least once in your life.
  4. Some people aren’t meant to be in your life forever. It’s sad, but sometimes people suck, and it’s not your fault.
  5. People will underestimate what you’re capable of doing. Use that to your advantage.
  6. “It will get better before you’re married.”  (Once you hit your thirties, is there a new way of phrasing this? It will get better before you retire?)
  7. You’re going to piss people off just by being yourself. Other people will love you for exactly who you are.
  8. You can’t please everyone.
  9. If you feel unwell most days, go to the doctor. If they can’t help you, go to another one. Find out what’s wrong and get well.
  10. Run (or do some other activity that you love and gets your body moving).
  11. You’re important to someone whether you know it or not, and they’ll show you how important you are to them when you least expect it.
  12. Having a job that you hate is probably the worst thing you can do in your life. Do what you love.
  13. It doesn’t matter what you did when you were 15 or 20 or 25. You can be whoever you want to be right now.
  14. Other people are going to tell you who you are, but you have to realize that this is either who they want you to be or who they think you are. You are who you want to be. Their opinion is just that.
  15. Other people’s life choices don’t affect your life. You can disagree with their choices, but the choices are theirs to make.
  16. Gluten is evil. Just “one bite” isn’t worth it. Ever.
  17. Even if you’re apprehensive about strangers touching you, massages are worth the initial anxiety … and the never having a migraine ever again.
  18. Sometimes things stop being awesome, and, when they stop being awesome, it’s time to move on.
  19. You can do more than you think you are capable of doing … and then a little more.
  20. Eat real food. Prepackaged crap is crap.
  21. Learning how to cook is probably one of the best things you can do for yourself.
  22. Unfortunately, sometimes, women are treated differently for being women. Luckily, we know how to put douche bags in their place.
  23. Emergency surgery is scary, but living without pain trumps that.
  24. It’s OK to be emotional, but there’s no crying in baseball.
  25. If you put it on the Internet, remember that privacy is relative. I know this, and I wish other people would learn this.
  26. Some of the best friends you have will be people that you may never meet in person.
  27. It’s OK to fail. Actually, you’re supposed to fail. If you don’t fail a few times, you’ll never know what success is.
  28. You never know what is going to happen, so make sure to do what you want to do, and make it count.
  29. The most important thing in life, above all things, is to be happy. If you’re not happy, you’re not living your life the way you’re supposed to be living it.
  30. Never settle.