This is why my teen can’t have nice things

I went up to the high school tonight with the teen to pay booster fees for the VetMed competition team. While we were there I realized I hadn’t been charged for some personalized yeti type mugs. The two payments effected each other.

So I was passing money back and forth from the booster chair to the teacher. (I’m in a room with two teachers and some PTA-ish mom’s iykwim) Finally, I said and did the motion: “I’m making it rain, baby!” One laugh (props non-Stepford) and a few polite giggles.

Then the two teachers were in another room and came back out and double checked to make sure it was split up correctly. (You know how sometimes I intentionally turn off my filter but sometimes it happens and I’m just as shocked as everyone else? Yeah…)

So, I look from one to the other and at the booster chair, bust a laugh and say, “If I’m handing out any more money, I need to be tucking it into somebody’s g-string.”

I went to the car to listen to music and wait for the teen after that.

Mom. Of. The. Forking. Year!!!

(Cross-poated on IG)

Missing my Mom and hoping she would be proud of me

Not a day goes by when I don’t think of and miss my Mom. Sometimes the grief still sneaks up on me in an overwhelming way and comes pouring out of my eyes. Take today for example. Gabby and I were talking about a movie sequel/ prequel and I casually said, ” But I don’t want her mom to die.” Boom! Before I knew it, the tears were streaming down my cheeks.

It still doesn’t make sense to my heart how I can live in a world where my Mom doesn’t exist. It just doesn’t work right. I still need her. I will always need her.

January 6th is the anniversary of her passing.

Passing. That sounds so easy. She passed. No. Just no. She was ripped from this world and left a void that can never be filled. Longing for her words or hugs never to receive them. Advice I need but will never get. Adventures we were supposed to share that never happened. Grandkids that are pretty damn awesome that will never know for themselves how amazing and hilarious their grandma was. She didn’t pass. She was brutally ripped away by a disease that is cruel and terrifying and one that is considered the “sister” to mine. In some ways that has helped me understand her in ways I couldn’t when she was alive. How’s that for a ironically sick twist?

Oh God I miss my Mom. My heart just does not understand. Time doesn’t make it easier. It just changes things. But the pain stays. The longing that I have no idea how to put into words but tugs at me in a relentless and unyielding way stays. Some days it rips my heart out through my tear ducts before I even realize it’s happening.

Damn. I just wish she was here to see my kids and to see who her baby girl has become. I hope she’d be proud of me as a mother. That’s my heart. I wish she knew me now.

I love you, Mom.

Being okay with just okay

Today was a day where I could only do the bare minimum. The bare minimum is okay. Just being okay is sometimes the best I can do.

Oh, I don’t like it but I don’t like it because I’ve always worried about the judgement of other people. Well, here’s the truth; even if I try to hide it, I’m not myself and those who really know me see through it. Some will stay and some will go. I need to be okay will that. My autoimmune diseases and chronic illnesses will always be a part of me. I’m in acceptance mode with that. Some friends will get on board. Some won’t. I’ve officially passed that choice and/or burden onto them.

I’m okay with sometimes just being okay. If all I do is get up, brush my teeth, and put on leggings and a top, that’s okay. There is freedom in letting go of caring about the judgement of others. No pretending anymore. No pressure. It’s being okay with just being okay.

This is the life I was given and I’m doing the best I can with what I have. And that’s okay.

 

 

Don’t say it if you don’t mean it

I was thinking a lot about the post I shared earlier on Facebook that was a “copy this” post. I just have a policy of not doing those. But I did this one because the issue hits home and someone important to me “asked” me to post it on my wall. Anyway, it’s been gnawing at me for days. And here’s why:

When I say “What can I do?” I mean *What can I do?* When I say “I’m here for you 24/7.” I mean always. Not “or when I feel like it.” When I tell you “I’ll be there if you need (or want) me there.” I mean I will find a way to get to you whether you’re down the street, across town, or across the country. I love with my whole heart and when people I deeply care for or love are in need or are hurting and need someone’s hand to hold, I’ll move heaven and earth to get to them.

But here’s the bitch of it all. We seem to live in an “I’m fine” world these days. In fact, the worse off you actually are, the more “fine” you become. I know how to play that card to perfection. “Oh, you know, rough days but I’m good.” “The headaches? Yeah, they’re back but I’m doing fine.” or “I’m just annoyed I got another diagnosis but it’s nothing I haven’t been through before so it’s all good.”  And especially the ones that go something along the lines of “Oh, that Facebook post about feeling worthless? Just a bad moment.” And in case you ever venture into the dark side of my Pinterest board? (Scary place. Take a friend.) “Oh, those Pinterest pins that talk about being broken and needing my friend(s)? I pin them on rough days. I’m fine!”

You’re not going to get more out of me because very few actually want to know the truth- especially when you’re like me and have chronic illnesses. That’s just the way it is and those of us with chronic illnesses know it. We learn quickly who is asking “How are you?” and who wants to know “How are you?”

Unfortunately, when you get a diagnosis that changes the very basics of your life, depression can set it. And I’m talking about real, deep down, hopeless depression. You have to know who you can count on for not only the initial truth but someone who cares enough about the follow-through. Sometimes that’s just too damn hard because most people are just designed to not only prefer the “prettier” fine than the”real” fine if that is your life. You may lose friends. (I have.) You may gain friends. (I have.) You may see friends you’ve already had in a whole new light. (I have.)

I guess what I’m trying to say is, please, think long and hard before throwing out those oh so easily said words: “I’m here for you. What can I do?”

Someone may be counting on you to mean those words. I’m serious when I say that. How many times have you said that yourself and meant either for the moment or until you get tired of their mood? Or said it with good intentions and did call or send something thoughtful or check-in and that’s where it ended.

You see, for many, it’s in the follow-up. Did you text them even when they didn’t text back just so they’d know they weren’t alone? Did you call and leave a voicemail just to say that you’re there and won’t go anywhere- that you’ll still be there when they are ready to talk?

That’s the bitch of depression. When you’re deep in it, you want… no, you need to hear that you’re loved and worth something, and that the people you love aren’t going anywhere. When you’re depressed, your mind lies to you. When things go silent you begin to believe you really are as unlovable as you feel; you are worthless; you are losing friends & family you love. And you believe that deep into your soul.

So, when you say “I’m here for you” please think about whether you are there for the moment or for the time they need. (Especially if you’re dealing with someone who has a chronic illness or autoimmune disease or really anything that’s not going to go away or go away easily.) We’re in for the long haul. Before you offer, ask if you think you can be too. Do you have the strength to ride these highs and lows with your friend or is it too much? There is no shame in admitting it’s too much if you’re honest with yourself and your friend. If it’s just for the beginning when everything is new, be honest. Say something more truthful like “I’ll keep you in my thoughts” or “Is there anything you need right now?” Believe or not, we count on those “I’ll call you back” or “I’ll text you later” comments you throw out. Yes, even when we are so down and dark and we sometimes don’t reply. Just please know, it gives us hope. It helps us hang on to something. Your simple “it was no big deal” can be a lifeline to someone who is suffering. Who feels alone. Who feels like her illness means she is no longer worth it. Who can’t find the light. Who wonders if she’s loved. Who wonders if out-of-sight is out-of-mind. Who feels as if when her whole world was turned upside down, her friends fell off.

All of that to say one simple thing.

Don’t say it if you don’t mean it.

Won’t you be my neighbor?

I’ve been thinking a lot about the power of the Internet and how creates strong communities. Well, at least that has been the word that has been used so much lately. I suppose now the word community is more appropriate it. But there was a time when that seemed too formal. Too “organized” for what organically came to be back then. I started officially writing online in 1995 with an online journal on Live Journal. That was pretty much just throwing words out there. But in 2003 I started this blog. (Happy belated birthday, blog. You look good for 14 years old!) That is what in the blogging community considers an OG blogger. When we blogged, it was just blogging.

We weren’t Facebooking, Tweeting, Instagramming, etc. To see what was happening with one another, we’d hop online and read each other’s blog. We’d leave a comment and move on to our next friend’s blog. To me, it was more like a neighborhood. We would visit one another’s home, catch up,  and then we’d go catch up with another neighbor. It was close-knit. If someone was going through a rough time, we rallied around them. If someone wasn’t going to be “home” for an extended period, we would house-sit for each other. ( Also known as handing the keys to your blog over to another blogger so they can guest blog for you so you never had an empty day on your blog.) On weekends, we would have a neighborhood block party where we would gather and drink *kook-aid (*not a typo) and chat with each other in our version of real-time. If you put out the call for help, it was there. I don’t know how I would’ve gotten through my Mom’s long, horrible hospital stay and her death without my “neighbors” and their support. They lifted me up and reminded me I wasn’t alone.

In 2005 I was introduced to a tiny little grassroots company and new community named BlogHer. I almost didn’t go to their first conference until a long conversation with one of their founders, Lisa Stone, who not only talked me into going but into speaking on a panel. It was the best decision I could have made. From the conference, I began to work for BlogHer as a writer, helped kick-off their ad network and did whatever they needed behind the scenes for their ’06 conference. (Not to mention speaking at three of the conferences and being a part of a morning keynote.) I wouldn’t trade those early days working for BlogHer for anything. It was amazing watching many of my neighbors become part of that community of BlogHers.

I met many friends through my neighborhood and the many communities I have belonged to over the years. In 2007, BlogHer exploded into a conference that had huge numbers of attendees and vendors and parties etc. It was exciting to see the growth, especially when I was there watching from the grassroots level. (I am so thankful to have beenworking there at the very beginning and grateful I wasn’t there at the end.) I  got to know so many new bloggers through BlogHer. It was in 2007 that I met a handful of bloggers I’m still friends with today. Real friends. Not just computer friends. Heart friends.

Almost two weeks ago, Anissa, an OG blogger died. Anissa was hilarious, kind and my kind of crazy. I first met her on a BlogHer trip to the Ford plant in Chicago. You see, there were six of us who had “alternative departure times” and therefore we were late getting to the bus. So, the big fancy charter bus was full, so the six of us rode in a small charter-ish bus. Best outcome ever! We all laughed until our abs hurt. Anissa and I had a similar sense of humor and riffed off of each other perfectly. It was a blast. (I made some awesome friends on that bus that day that are still real, close friends today.)   Every time Anissa and I saw each other after that at BlogHer, we always shared at least one or two smart-ass remarks. We weren’t close but we had moments that made me laugh. So, when I heard that she died, I literally began sobbing. Right there is the waiting room of the eye doctor with the girls. Someone who has survived so much and who has a personality that is larger than life and is so young isn’t supposed to just suddenly die. Not someone so loved, so needed by her family, so adored by her friends. It’s so hard to wrap my mind around it. It just hit hard. It hurt hard. My heart has so many things I want to say but I honestly don’t know how to say it. The quote on Anissa’s about section by Erma Bombeck is one she lived by and I hope I live up to as well.

When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and I could say, “I used everything you gave me.”

That week wasn’t over with me yet. There are so many things going on, rushing to force  themselves out of my brain through my fingers, and I am having one hell of a hard time trying to sort through them. Trying to figure out what to share and what not to. I found a friend from school died. I’m not ready to talk about that yet. But that was within a couple of days of Anissa’s passing. I also struggle with what is medical to help you understand me a bit better and what is boring medical and what is scary medical. (Most recently, I had a bad reaction to medications I was taking. Not only was it making things worse, it made me insanely angry, irrational, and suicidal. Not a good combo with the things in my Universe at the time.) Also?  You know how when you look really sad and kind of lost people will tell you look like you lost your best friend? So, that  actually did happen. I’d tell you it’s a long story and share it but in all honesty I don’t know the story so I can’t share it. My take away is that I won’t let anyone use a certain word as a term of endearment for me again when it is used one week before walking away with ease … hell, I have no idea. However, one of the best gifts Anissa could have given me was helping me work through serious issues & things happening on my own. That was a blessing in disguise.

Anyhoo, while looking for the picture of the six charter-ish bus gang, I went back and looked at pictures from BlogHers from years past. From ’05 when I walked into a conference where I only knew people I  had read online. And seeing how I found a tribe that got me. I still love those ladies I made friends with that year. It was a new and wonderful experience that I wouldn’t trade for anything. And then came ’06. Oh, BlogHer ’06! I laughed my ass off all weekend. I danced even without music. I “hugged” statues. I took a nose-dive into a hot tub. All of which was caught on camera. I laughed so hard looking at those pictures and remembering how it all came with such ease even though it was such a hard time for me. Then ’07 where I finally met THE Busy Mom. We can sum  up ’07 with one word: CHEESE. Enough said. I could go on and on. For years this was BlogHer for me. I am so grateful for the many friends It brought into my life. The community that brought me neighbors, so to speak.

There is so much going on  in my life right now. Some good and some that is too hard to really talk about here or now. But I am glad to be back. I’m just going to go about dusting things off around here. Rearranging the furniture. Take down some old pictures that don’t belong on the walls anymore. Put up some new ones without 80’s hair. It’s time to clear out the cobwebs, shake out the rugs, and get back to me & writing.

 

 

 

When I could touch 9/11 a decade later

I’ve shared this post  before. I will probably share it many more times. It’s my only real way of knowing what to say on 9/11. So, here is my heart laid bare for you to read about a city I fell in love with and a heartbreak that I could only express in tears that summer day.

—-

When I knew that I was going to be in New York City for a conference in August, the first thing on my mind was to go to the 9/11 memorial. One of my dear friends invited me because she was planning to go with a group the first day there. It was the perfect plan. Except that it wasn’t. First, the group was filled and didn’t have enough room for one more. (I was heartbroken but realized it was what it was and there is nothing I could do about it.) Second, you know what they say about the best laid plans. First, I missed my flight so that delayed me. When I finally reached the city it took me nearly 3 hours to reach the hotel from the airport. So, even if I had been included in the group, I’d have missed it traveling anyway. Things happen for a reason. I knew it would weigh heavy on my heart to be there but I thought I it was exactly what I wanted to do.

Now, if you were with me during most of my trip to NYC, you know it was super emotional. You see, I’ve had a mini-crush on the city from afar. I have never been there but my heart was all “NYC ERMAHGERD!” But when I was actually there? It took mere seconds for me to fall in love with the city. Things that people who live there probably don’t even give a second thought had me so smitten and emotional. It became so commonplace, my friends didn’t even give it a second thought to look over and see tears in my eyes or rolling down my cheek over something that moved me about the city. Something I dreamed of seeing or doing and was actually seeing and doing!

All of that to say, with my emotions so up front and center, maybe the 9/11 Memorial wasn’t the place for me. This year. But there was something that I was supposed to see and experience in relation.

I went to an event with one of my dearest friends, Liz, one evening in South Village. And of course, I was enamored with just about everything in the area. (Shout out, City Winery!)  As she and I were walking around the area, I noticed a firefighter standing outside a firehouse. I peeked in and noticed a memorial wall. (cue tears) I asked if I could take a picture if it wouldn’t be too disrespectful. He smiled and told me it would be fine and not at all disrespectful. As soon as I set up the shot I started to cry. No, cry doesn’t really cover it. I began to sob. I took in every face. I looked at every name. It was a “small scale” vision of such a massively huge tragedy. And maybe that was what I needed to see more than the huge memorial. I needed to see one company. To see the impact that day had on them. To see their friends and brothers they lost.  Their names. Their faces. Eleven men. My heart broke. I did my best to capture the shot, but my hands were shaking. As we were leaving I tried to thank the firefighter but I could barely whisper “Thank you” through my sobs. With a teary look at me, he just nodded.

I have always felt the weight of 9/11 each year in my own way. I couldn’t truly imagine it. I still can’t. Unless you were there and felt it, heard it, smelled it, survived it or lost someone that day, I don’t think you can really grasp the enormity of the day. But walking the streets and falling in love with NYC and the people there, brought it a little bit closer to my heart. Standing in a firehouse that lost 11 of their finest brought it closer to my heart.

Though I truly thought I wanted and needed to see the 9/11 memorial, I realized my heart–my very soul– needed to see what that day meant in a more intimate way. One day I hope to go see the site where the twin towers stood and hope I can do it with someone who will understand my flow of tears. But this year, I am so very thankful I was with Liz who held my hand and never once questioned my emotional reaction or tried to stop it.

I’ll never forget the day that beautiful and completely amazing city came under attack. And now I will never forget that one time I stopped by a firehouse with someone I love to take a picture, thank a fireman, and sob over the loss of lives that horrible day brought.

Never.

~~~~~~~~~~~~~~~~~~~~

These are the heroes pictured who were lost on that horrific day.

LADDER 5

Lt. Mike Warchola
Lt. Vincent Giamonna
Lou Arena
Andy Brunn
Greg Saucedo
Paul Keating
Tommy Hannafin
John Santore

BATTALION 2

BC. William McGovern 
BC. Richard Prunty 
FF. Fautino Apostol, JR 

Engine 24/ Ladder 5/ Battalion 2
227 Ave of Americas (6th Ave)
Manhattan

When your passion clashes with your prison

Writing is my passion. It always has been.  It doesn’t matter what you ask me to write about, I’ll love it. College was an oasis of wonder for me. I loved writing essays. I loved to challenge the status quo or argue a point or share what I thought on a topic. And when they dropped creative writing in my lap, I practically melted on my keyboard. But wait. Then later on people started paying me *in real cash money to write. I was published in several publications and  even in a couple of books. When an agent came to me (yes-she came to me) asking for a query and signed me with her agency? I died, went to heaven, made St. Peter slap me upside the head and came back to do more writing. I love it that much.

And then came the chronic daily headaches. And the migraines. And the bone crushing fatigue. Those are not good conditions for writing. In fact, it’s like I’m in prison with these health issues when it comes to my beloved passion and that isn’t fair. In fact it sucks. Someone recommended I try Dragon or another voice to text app but that isn’t the same. It’s not the fingers flying over the keyboard. Or the rush you get when you almost feel like you are no longer in the driver’s seat because the words are flowing so fast the story has taken over and your hands are merely the method to bring the story to life. Now, when I write for a long time, I pay the price in pain. My head. My eyes. My joints. I’m being literal here. I literally pay a physical price to write every word on this blog.

Oh, but what a beautiful price it is. I love writing so much. I love every thing about it. It is truly my passion. So when you see a blog post from me, know that is truly a labor of love. I wrote it from the prison my body locked me in and I refuse to let it hold me back. Words. My words. My stories. I won’t stop. This is my passion. My love. The one thing I know will always be soothe me even when it hurts me.