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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. 🙄

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 😉 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. 🤦‍♀️🤷‍♀️)

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

The Next Chapter

10ish months ago I sat at Stable 12 and wrote a “eulogy” of sorts about my dad on a scrap of paper I found in my purse. Then got up in front of about 100 people, took a chug of a PBR pounder, and spoke about my dad.

9ish months ago, I had an I-don’t-give-a-f#ck moment and wrote my first blog post about my fibromyalgia.

I’ve never considered myself to be charismatic, funny, open, or a public speaker or writer of any kind. I’ve always considered myself to be painfully shy, extremely awkward, guarded, sensitive, and, did I mention awkward?

To my total surprise, my writing has been well received. Beyond my wildest dreams. I expected about 7 people to read my first post (since that’s how many people asked about my fibromyalgia at that time) and then I’d forget about my blog and let it collect dust. I’m really not good at sticking with things. At all. Like, not being consistent is the only thing I’m consistent at.

In the past 9 months, I’ve written over 20 blog posts, and have been writing for Thought Catalog, Fibromyalgia Resources, and most recently So She Slays, among other random websites that have shared my work. I’ve also had over 50,000 views across all platforms, which is definitely over my original prediction of 7.

I’ve always felt a little lost, and a lot without purpose. I always have been pretty happy with my life (despite some of the shitty, tough times), but always felt like I wasn’t totally good enough. That something was always missing.

Writing has helped me in so many ways. It’s been my therapy for dealing with the f#cked up stuff life has been throwing at me. It’s helped me feel like I have a purpose. That if I can connect with just one person, and help them with something they are struggling with, then I’m doing something right. It’s helped me find confidence. Mentally, emotionally, and even physically. It’s helped me give so many less f#cks about the things that don’t matter, and more about the things that do. Guys, it helped me find my voice.

With all that being said. I keep feeling like there is more. It’s something in my head and my heart that I’ve been trying to ignore, but, it keeps coming back.

I’m writing a book.

No title yet, but, the general theme is “What the f#ck, your dad just died.” (“Losing your dad for dummies” is copyrighted, so, there goes that idea. 🙄)

This is terrifying. More so than the extremely vulnerable blog posts and stuff I’ve been writing. A book is full blown commitment. Gathering my current thoughts and going even deeper.

So, why am I telling people now? I’ve done a lot of reading about this, and a lot of what I read says to share early. Let people know what I’m dong so I can’t back out (again, something I’m great at). Share now to build my tribe, to enlist people to help me do this. To support me, critique me (gently, please. Back to the sensitive thing.). To encourage me when I feel like this was a dumb idea and I’m in way over my head. To vote on font, layouts and graphics. To just be there. Pop champagne and pour a drink. Let me vent, and help me celebrate the victories.

I know this isn’t going to be easy. It’s going to be full of ups and downs, but something that I’m feeling pulled to do.

Thanks to everyone who has been there from the beginning. It’s been a wild ride, and I have a feeling it will continue to be.

-J

Go Birds!

Tonight is the last pre-season game before the most wonderful time of the year… FOOTBALL SEASON! (tied closely with Christmas, obviously)

This means Sunday’s full of “Go Birds!”, brunch, wings, nachos, smack talk and hoping I don’t totally blow my fantasy football ranking.

This also means some Sundays doing that solo. Which, is something I talk about a lot. Some says are harder than others. 90% of the time I’m so confident in it. If I want to go somewhere or do something, I’ll do it. I won’t let the fact that no one is able to go with me (or that my friends arent as passionate about football as I am) stop me. I think this is fine, but society hasn’t caught on yet.

So many times I’ll show up by myself to a bar or brewery alone to catch a game (or games, depending on the Sunday) and a beer (or beers). I’ll grab a seat, browse the menu and get excited. Then I get asked “Are you waiting to order until the rest of your party shows up?” (Or some variation). Sometimes when I answer that I’m a party of 1, I get a look and a vibe that it turned into a pity party instead of a football game.

I’m on a personal mission to break the stigma. I mean, if you can’t have a good time with yourself, how do you expect anyone else to? There are definitely some times/places I occasionally feel self-conscious going to solo. I’m only human. Not a going-out-solo-super-hero…. yet.

Sometimes I think about it (maybe too much), and wonder if maybe it’s a defense mechanism. That, the older I get, the more my friends are dating, getting married, and having kids. Which means, the less face time I have with them. Which means… you guessed it…. the more I’m going out alone. This isn’t bad, or anything negative against them at all. It’s just, life. I think the more time I spend alone, and the more I get used it, that the less lonely it feels. This has definitely been something I’m battling lately, and I’m determined to come out on top.

Go Birds!

-J

I don’t believe that my dad is in heaven

I was born and raised Catholic. Irish Catholic at that. I went to Catholic school from kindergarten through 10th grade, and then back for 4 years of college. So, I was taught from a young age, if you are good then you go to heaven, if you’re bad you go to hell, and sometimes, you end up in purgatory. I am not a practicing Catholic, and haven’t been for the past 6ish years. Does that mean I forget everything I was taught? No. What it does mean, is that I’m an adult who has formed my own beliefs and views on the world. Does that mean I don’t respect Catholic, or any other religion, teachings and views? NOT AT ALL. I have so much respect for anyone with a deep sense of religion. Honestly, I wish I believed in something that strongly.

When my dad passed, and still to this day, people always feel the need to say things like “Oh, don’t you worry, your dad is in heaven”, “He’s watching down you on”, “He is with your grandparents now”. I respect everyone saying that to me, and that their beliefs are their beliefs. Even if that isn’t something I necessarily believe in, it is comforting to know that someone believes that. However, I don’t appreciate when people question me and judge me when I answer honestly after being asked “You know your dad is in heaven, right?”

Because, honestly, my answer is no. I don’t believe my dad is in heaven. And that doesn’t mean my dad is in hell. If I believed in heaven, then you bet your ass I would think my dad would be there. I’ve been struggling for years to figure out what I believe in and where I stand in terms of religion and the afterlife. Losing my dad made that struggle even harder. If there is a God, why did he have to take my dad so soon? This is a question that has kept me up many nights since losing him. Yes, everyone dies. It’s the circle of life.It’s part of life. We all live, and we all die. I get that. But, why so soon? Why now? That’s where I had to dig deep and really process everything I was taught growing up Catholic and also question my current struggle of trying to figure out what I believe in.

Here is what I came up with. I don’t know if I necessarily believe in one “god”. I believe that there is definitely something greater out there. Something, someone, or even someones who have our better interest in mind and are there to help guide us. I’m kind of a believer in the “Universe”. The past few years I’ve been trying to guide my head and my heart by my belief that the Universe has my best interest in mind. My head and my heart often challenge each other, but in the end I feel that I am guided to my decision by a pull in the Universe, who knows better than I do what I really need. So far, this has been working out pretty well for me. Yes, life is fucking hard. Yes, there are so many ways it could be better. But, overall, it’s helped me blossom into the cynical, caring, foul-mouthed, funny girl some of you have come to know and love over the years.

So, dad. Where the hell (LOL, get it…. trying to be punny here) is he? Do I think he’s somewhere in a barcalounger with a case of Miller Lite watching the Phillies try to make a comeback and ecstatic that Charlie is back? Sure. I believe that he is somewhere in space and time doing what he loved. That’s the part of my heaven education I keep with me. Do I believe he’s in the sky above the clouds dressed in white? No. Not at all. First of all, he would hate to be dressed in all white. He would spill his beer and drip his food all over it. Do I believe he’s looking down on me? Not exactly. Again, this goes back to the fact that I don’t think he’s above in the clouds. I do believe that he’s with me. After a long couple months, I’m accepting that from his love, he is in me. That I carry on pieces of his legacy, his memory, and his passion in my daily life. I talk to him as if he’s here. I ask for advice. I yell at him for being gone. So, yes. He’s with me. He’s around. I’m still trying to figure out if I think I see him in physical signs in the world, so I’ll get back to you on that. This next sentence could be contradictory, but, whatever I can believe what I want and need to. I do believe he is a guardian “angel” of sorts and is somehow looking out and protecting us.

So, no. I don’t believe my dad is in heaven. I don’t know where he is or what he is. I believe he led an amazing life and left an incredible impact on the world around him and that he will live on in the lives of the people he touched.

I ask that you respect my beliefs as much as I respect yours. I’d love to hear what you believe in, regarding afterlife and in general. Leave a comment, or message me. Let’s grab coffee or a beer and learn from each other.

-J

Please feel free to browse through my blog for other posts, or check out some articles I have written for Thought Catalog here.

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