The first year without you

The first year without you has been simultaneously the longest and fastest year of my life. It has been challenging and lonely, and so, so hard. At times, the first year without you has felt impossible.

The first year without you has been a reminder of how much joy you brought to the lives of so many people. A reminder of the impact you had on everyone you met. The first year without you has been dark. It’s been a constant reminder of the incredible person you were.

The first year without you has been angry. Unfair. Confusing. I still don’t understand why. There is so much I need you for. So much to talk to you about. So much I won’t have with you.

The first year without you has been full of denial. I still can’t believe you’re gone. I still pick up the phone to call you. I still forget that we don’t have you.

The first year without you has been full of learning and growth. Learning about myself. Learning how to feel. Learning how to deal with this grief. Learning and understanding myself, and others and just how differently everyone handles grief. It hasn’t been easy. But, it has led me to unexpected places. Losing you pushed me and inspired me to find my voice, and to being writing . Never in my life did I think I’d be opening up and connecting to so many people, but here we are. I’ve grown so much in this past year, in ways I didn’t know possible. In ways I didn’t know I needed.

The first year without you has been full of pulling away. From friends. From family. Feeling it was sometimes easier to hide. Not something I’m proud of, and I should have/could have handled it differently. I’m working on it. Pulling away from experiences because I don’t have you here and am afraid for pieces of my future without you. I’m afraid to date because I’ll never get your opinion. I’m afraid of a future that can lead to marriage because I won’t have your blessing. You won’t be there to walk me down the aisle. I’ll never get a Father/Daughter dance.

Honestly, the first year without you has been a clusterfuck. Losing you has led to a series of unfortunate events that I need you for. You were always in my corner, and always knew what to say and what to do.

The first year without you has been lonely. I miss your voice. Your laugh. Your hugs. Your demanding of showing up for a visit when I didn’t even know I needed it. Missing your random mailed envelopes of coupons. I miss talking sports with you. I miss the weird whistle noise you made when you wanted someone’s attention. I miss you giving me directions somewhere when we all knew I was just going to put it in my GPS. I miss cracking a beer and just shooting the shit with you. I really, really, miss the holidays with you. Christmas will never be the same.

But, with all the hurt, this first year without you has been full of love. Love for others, and from others. Having grace with myself to move through this process. Feeling the love of all those in my life who care for me, our family, and most importantly you. Full of support and encouragement. Full of gentle and understanding people. Full of so much love for you that will never go away.

Dad, this first year without you has really fucking sucked. And somehow it’s also been great. It’s been life changing in good and bad ways. This first year without you is one I never wanted to experience.

I love you, and miss you, and hope I’m continuing to make you as proud of me as I’ve always been of you. Each day without you I’m striving to be the woman you raised me to be, foul mouthed and all. Thank you for being the best dad, friend, and role model. Thank you for always showing up. I strive to be the person you saw in me.

This one’s for you.

SlΓ‘inte.

-Julie

Why the second year is the hardest

After losing a loved one, you experience a lot of firsts. A lot of hard firsts. Especially first holidays. You’re still in shock. You’re adjusting not only to losing them, but to life and special occasions without them.

That first year you try and stick to traditions, but it’s not easy. Plans get adjusted. You don’t put out all of your decorations. You kind of half-ass the holidays.

You always expect and anticipate the firsts to be the hardest. I did. They weren’t easy. At all. Day to day is still an unexpected roller-coaster. You’re still grieving, and let me tell you something, that is okay. Especially leading up to the one year mark. (If you’re new here, I lost my dad basically the day before Thanksgiving last year. So, excellent timing.)

What I’m learning though, is that the second year of holidays is different. It’s surprisingly harder. The shock of the loss isn’t as strong and reality is setting in. The dust is settling a bit and you’re navigating life in the “new normal”. Some people even forget what you are going through and that’s okay. Not only is Dad not coming back, but life is going on. Special, happy times aren’t as happy. But they are happening. I’m realizing that Thanksgiving and Christmas are really happening without him. Somehow.

I am beyond blessed with family and friends. I have an incredible and understanding support system. But, I’m still honestly feeling anxious leading into it. I was am a Christmas fanatic. I love it. Dad raised me that way. Really, not much brings me more joy than some Christmas music and some twinkling lights. The lights just don’t seem to shine the same without Dad.

I’m finding myself holding on to memories and traditions. All of the small things that at one point seemed meaningless, now mean everything. The songs and the movies. The little chachkies that are now invaluable and full of precious memories. That time my sister spilled chocolate milk all over the turkey and no one even got mad. The time my siblings and I all had the chicken pox on Christmas and had to stay home. Peeking down the stairs to see if Santa came. Always burning the Christmas morning cinnamon rolls while the Yule Log played on TV with a Christmas record in the background. Dad always behind the video camera and always making sure all the batteries were in the toys and that all the decals were on Barbie’s Dream House and the Ninja Turtle Van.

But, as hard as it seems at times, life goes on. If there is one thing Tom Donnelly loved, it was the holidays. I know for damn sure he will come down and haunt me if I half-ass Christmas again. As hard as I know it will be, I need to be all in. So, time to channel my inner Buddy the Elf and squash the Scrooge.

I guess what I’m saying is, be gentle. With yourself. And, with others. Don’t just try to “get through” the holidays. But embrace them and celebrate them in memory of those we love.

Happy Holidays!

-J

Life status: Currently holding it together with one bobby pin.

When I started this blog, I decided to open up and share about many aspects of my life. This vulnerability has honestly changed me and has connected me with people I’ve known for a long time, and people I’ve never met on the other side of the world. Sharing pieces of my life, good and bad, helps me and others know that we are not alone.

Recently I mentioned that I am experiencing hair loss. Which, is so embarrassing. I really have been going back and forth about how much I am comfortable sharing. I am a 31 year old, single, female, and I am rapidly balding. Pain? Anxiety? Depression? Grief? All things that I know other people go through, and all things I’ve gotten comfortable being uncomfortable talking about.

This week I was diagnosed with androgenetic alopecia. Basically, my body is producing hormones that it shouldn’t be, which is causing my hair loss. Oh, this is also male pattern baldness. So, ya know. That’s cool.

Again, this is so embarrassing. I feel like it’s the first thing people can see when they look at me. So, to overcome my anxiety about it I decided to just open up and deal with it. It’s nothing I did wrong or anything I can control. My body is out of whack a bit (what else is new) and I need to do what I can to fix it.

So, how do they treat it? Well…. I am on prescription shampoo twice a week, and an over-the-counter shampoo and conditioner in between and have apply Rogaine every day. On top of that, I am taking a prescription that is ironically primarily used for congestive heart failure, which, is essentially what led to losing my dad. The universe can be a funny bitch, can’t she? The medication is an anti-androgen, so it should hopefully combat and level out my hormones and stop my hair from falling out. The medication is also a water pill (to get rid of the excess fluid building up around the heart and lungs in heart failure), as if I don’t pee all the time anyway. This is all a major lifestyle change for a girl who only washed her hair twice a week.

I don’t want to sound ungrateful. I know the diagnosis could have been much worse. I was tested for lupus, and many other things, and this is honestly the best case scenario. As much as I know that and remind myself that, it still sucks. This past year I’ve felt like the universe hasn’t had my back, and this is just reinforcing that feeling.

Like I said before, I’ve opened up and connected with other people on less than pleasant things before, so I’m going to be open about this as well. So, here are some very embarrassing photos of my balding head. I didn’t look good bald as a baby, which is why my parents hid my bald head with my brother’s Santa hat, so fingers crossed this treatment works!

Okay, now that I distracted you with a baby picture, here is my balding head.

Reason #1 I’m glad I don’t do a center part… so that I can hide this.
I need to strategically style and part my hair to hide my old man bald spot in the back.
Yup, here it is, in all it’s glory. Not parted, au naturale. VERY ATTRACTIVE. I know.
Again, very embarrassing. Side of my head. I need to part my hair very carefully.

Based on all of this, I’m in the market for cute hats if anyone has any recommendations.

I know this could be worse. And that people have much worse diagnoses and problems, but this does suck. A lot. I’m doing my best to stay positive and optimistic. If anyone else is going through this, don’t hesitate to reach out. You’re not alone.

-J

Snitches get stitches

If you know me, or have been following along, you know the past year and a half-ish has been a constant uphill battle. I’m talking uphill, barefoot in the snow to and from school, kind of battle. I’m not really sure who I pissed off, but the universe has been testing me. A lot.

Fibromyalgia, car accident, losing dad, shoulder injury, and so on. Most recently is my unexplained, rapid hair loss. (If you read my last post I quickly touched on this.) I assumed the hair loss was just stress since all of the blood work came back relatively normal. But since I’m too young and too vain to be bald, I went to the dermatologist and she had other ideas. She reassured me that I’m not crazy, and that I do have significant hair loss happening. Long story short, she saw some stuff on my scalp and other symptoms that just aren’t adding up. So, she ordered some more blood work, and took two biopsies from my scalp. Which, if you’re wondering, was just as fun as it sounds. I always thought it would be totally badass to have cool stitches and scars, especially on my head, but this isn’t exactly the story I was hoping for.

She mentioned it could be lupus. LUPUS?! What the f#ck. I was “shook” as the kids would say. Not at all what I was expecting. Not just stress. (Although this definitely adds to it!) It could also be hormonal, or just female pattern hair loss, or a number of other things. She mentioned that with the fibromyalgia, a lot of lupus symptoms could be masked. And, since I’ve had a few flare-ups recently, that’s her gut feeling. Within 2 weeks I should have the results and more of a plan of attack. Until then, I’ll be icing my stitches with my good friend, anxiety.

I’m not going to lie. That brought me down a little. I’m grateful that we are already starting some treatment of prescription shampoo and steroids while we wait for the results… but, come on. Have’t I had enough? Haven’t I battled enough? I’ve been grumpy. And exhausted. Mentally, physically and emotionally. And in a bit of pain and discomfort.

As much shit as I’ve trudged through the past year and a half-ish, I need to remember that I’m still here. That I haven’t given up, and I’ve made it this far. Yes, I complain. Yes, it sucks. But, it also shows me what I’m capable of. I keep pushing, and keep fighting. I have to keep going. I’m not sure what would happen if I do stop and give up, but I don’t want to find out.

Throughout all of this I’ve found inner-strength I didn’t even know I had. Anytime I get down and feel lost, I need to remember how far I’ve come. Just another test to see how hard I can push myself. However, as hard as I am pushing myself, it’s also teaching me balance. To listen to my body. To rest. To (force myself to) do nothing sometimes. To go to bed at 8:30 pm. To try and re-discover yoga.

If you’re on the same hill, I’ll help push you up if you help me!

So, time to keep pushing forward. And, maybe do some wig and hat shopping.

Go Birds!

-J

What the f*ck is fibromyalgia? Part 2

It’s been a minute since I really, and I mean really, broke down some more fibromyalgia facts with you all. So, I figured why not share the really embarrassing stuff that no one really enjoys talking about?

(Let’s be real, I no longer care or have shame.)

So, if you read the OG “What the f*ck is fibromyalgia?” post you learned all about the pain, exhaustion, swelling and mental health struggles. I know. How could there be any more fun?!

Well, buckle up.

*Disclaimer: we all know I am far from a doctor or expert of any kind. So, all of this is what I deal with, and what I’ve researched and talked with my doctors about.

IBS-ish

Let’s just get right to it. Somehow fibromyalgia causes some fun stomach issues. Discomfort, pain, bloat, constipation, not constipation, sensitivity issues. (Don’t worry, I pulled this from my online dating profile).

Some days are totally fine and others are honestly pretty shitty. 😜

Hair loss

This is a very serious issue for me that just rapidly occured in the last week. I wasn’t that cute with my big ol’ bald head when I was a baby, and really don’t think I’ll look any cuter now. But, I went to the doctor today and he confirmed this is very common for people with fibromyalgia, but, per usual, has no idea why. Thankfully he’s not letting that be the answer and ordered a full panel of blood work and referred me to a dermatologist.

So, fingers crossed we get this figured out. Or, who wants to go wig shopping?

(In all seriousness I didn’t realize how vain I actually am until the bald patch on my head decided to show up)

Itchy hives

Chicken pox, but make it constant. Ok, well, not constant but a few days a week I have random hives for no reason. I’ve had alllllllll of the allergy tests, so please don’t @ me about that.

Its even better when they are on my face. So attractive.

Easy bruising

Like a peach. Sometimes I feel like I look at a sharp corner and BAM! I have a bruise on my leg. I swear, each week I have about 10 unexplained bruises.

Sweating

As dad would say, “like a hooker in the front pew of church.” I’m never cold. Like, it will be snowing outside and my windows are open. I feel like there isn’t enough deodorant some days. It’s also a bit challenging when heating pads help the pain, but come on, it is HOT.

I also have an irrational fear that I smell and no one tells me, so you can imagine how fun this symptom is. Have I mentioned I have anxiety? No idea why. πŸ™„

Flushed face

On the plus side, my blush lasts me a long time because I don’t need to use a lot of it. But, I also look warm, uncomfortable and embarrased. Which, now that I think about it is how I feel most of the time.

Twitches and muscle spasms

I’m not always just winking πŸ˜‰ Eye twitches, arms, legs, you name it, and it’s spasing. The most fun is when it causes me to knock things over. Or, even better! When my hand twitches as I’m holding, I don’t know, a mug full of hot coffee and then I drop it all over the place. (Moment of silence for all those lost mugs)

Allodynia

This is a weird one, and please dont stop hugging and high-fiving me. But this fancy-ass word basically means it hurts to be touched. This is most common for me with unimportant things like clothes and shaving my legs.

(I love hugs, so keep ’em coming! Really, I don’t feel like I get that many which is sad and embarrassing but I’m going to share it anyway!)


I hope you enjoyed this second installment of the “What the f*ck is fibromyalgia?” series. Hopefully this provides some insight into my life, and some others who you may know. Really though, it could be a lot worse. I am fortunate that my fibro is more or less under control, without medication. I know that not everyone is that lucky, and I do my best to not take it for granted.

Next time you see me, give me a hug and tell me if I smell.

-J

Clowns, geese, and Carson Wentz’s health

What do all of these things have in common?

THINGS I AM TERRIFIED OF.

Fear is a funny thing. The more I think about it, and the more I talk to people about it, I reaffirm the fact that we live in a very fear-driven society. We let it take hold of little, and big, parts of our lives. We have nightmares. We joke about it. We avoid people, places, and situations because of it.

Ironically people tell me that I am “fearless” because I skydive, live on my own, and open myself up in blogging. In reality, I am chock full of fear.

Fear can be tangible. Something we can feel, and touch. Like geese. They are tricky little assholes. And clowns. Dear God, fucking clowns. My mom dressed my sister and I up as clowns for Halloween when were in pre-school or kindergarten and I hated it. Yes, the homemade costume was cute. And i remember the pom-poms on the costume. But, clowns. They are terrifying. Happy? No. Yes, the IT movies are cinematic masterpieces. But then I’m terrified Pennywise is going to pop out of my sink or shower for the next few weeks (okay months) so… yeah. It’s great. As you can imagine Halloween time is fun for me.

I’m the photogenic one on the right with my eyes closed in fear and protest. But, look how cute the homemade costume was. And those bangs…..

Okay, let’s reel it back in.

Fear. Fear of rejection. Fear of being alone. Fear of disappointing others. Fear of disappointing ourselves. Something I think many of us share. Fact about me: I meet someone, we maybe go on one or two dates and I immediately make up a million “red flags”, aka totally bogus reasons as to why it won’t work out. I give into my fears of rejection and truly becoming a single spinster cat lady by rejecting myself before someone else can. (Hey, I’m fearful, not logical.)

Another fear of mine is vulnerability…. I guess I blew that one out of the water by writing this blog, huh?

I’m constantly trying to overcome my fears. How do I do this you ask? Well, for starters, by not crying and throwing my phone when I see a picture or video of a clown. Also, by not running the other way when I see a few geese at the park. But, let’s not talk about Carson. #trusttheprocess #yougetwhereiamgoingwiththis #gobirds

Just catching a Sixers game with my friend.

As much as I am trying to face my own rational (and irrational) fears, I know so many others are too. I love to encourage and support my friends and family in all they do. Especially when it comes to facing, and crushing, their own fears.

My best friend has a very real fear of flying. It’s been about 7 years and got to the point that she got off off a plane before the doors shut because her fear took control. This not only happened to her once, but twice. She finally decided that enough was enough. There is an airport not too far from where we live, and each year they do a Pennies-a-pound event, where you basically pay $40 and get to go for a plane ride in a small aircraft. All of the money raised goes to an organization that supports women pilots, which is amazing. #girlpower. She asked me if I wanted to go with her to support her in overcoming her fear, and my answer went something like this…. “YES YES YES YES YES”. I am so honored and excited to be asked to be part of such a big moment in her life. Today we went to the airport, talked to some pilots and went on an amazing airplane ride. AND SHE DID AMAZING. No panic. No backing out. Just crushing and taking control of her fears. She even wants to go back tomorrow. Did I mention she tried to do this 2 years ago but chickened out? If this isn’t inspiring, I don’t know what is.

So proud of her after the flight!

I think we all need to be a little more like her. Pick a fear, and find a way to control it, instead of letting it control us.

Happy fear killing, friends!

Go Birds!

-J

Girl you look good won’t you back that azz up

Backing up I did recently: My ass, dancing in the kitchen. My car, out of my parking spot.

Backing up I didn’t do recently: the 15 page start to my book. With all of my ideas, outlines, intro and some hard topics. (This happened a week before I publicly announced to the world that I decided it would be a good idea for me write a book. πŸ€¦β€β™€οΈπŸ€·β€β™€οΈ)

I KNOW.

I work in IT. I should know better. I should have my stuff backed up, saved in the cloud, emailed to myself… whatever. But, I didn’t.

HARD LESSON LEARNED.

I got angry. At myself. At Windows for releasing a broken update that crashed my computer. At the universe. At my GPS for not taking me past Shake Shack after spending hours at the Microsoft store (they were so nice and helpful, btw.) I just got angry.

I literally poured my heart and tears into those pages. I know 15 pages doesn’t sound like a lot, but it was. Trust me. Single spaced, 11 point font. Full of some deep, dark shit. Some great one-liners and jokes. So many ideas. I wrote kick-ass intro to the book. I had sample fonts that I liked. For me being me, I was impressed with how dedicated and into it I was.

Since that dreadful day, I haven’t been able to get myself to write much at all, and havent even attempted to restart the book. I went out and got index cards and a notebook to dedicate to book writing. I’ve tried different coffee shops and bars. I’ve tried every room of my house. I just can’t get my groove back. (Hey Stella, any tips on that?)

The thing is, I know I can do it. Yes, I doubt myself a lot. Yes, I generally lack self-confidence. That’s all true. But, I also have learned to push myself. I get things done because they have to. I figure it out. If the past year has taught me anything, it’s that. I need to give myself more credit. I had 15 great pages before and I know I can do 100 better ones. I just need to find that spark again to do it.

So, bigger life lesson other than backing up your computer. When life knocks you down, get back up. Push harder. Prove to yourself above anyone else that you can do it. I don’t think the universe is trying to talk me out of writing the book, I think it’s pushing me to write a better one.

Let me leave you with some wise words from a true poet:

“I get knocked down, but I get up again. You are never gonna keep me down.”

Chumbawamba

Go Birds!

-J