Things That Suck

Goodness, I sound like such a child.

"I feel left out," I told my husband recently. Slighted. Overlooked. Ignored, even.

Sometimes people I refer to as my friends go ahead and do things without me.

Then I see it. Showing up on their Facebook walls.

Dinner and drinks. Lunch with friends.

Am I not their friend, too?

What about me?

It's often rougher in the blogging world. You think you're connected to people. You've established what you find as SOMETHING. You think that maybe you're finding your way. And then you're the only one not included.

You know what?

That kind of sucks.

And yes, it's true that sometimes friends are not really friends. Does that even make a stitch of sense? I don't know. But Facebook friends are often acquaintances. And yet, when the community you think you belong to goes ahead and does a big bloggy thing without just you? You feel like crap.

You read into it. You withdraw.

You remind yourself that these are not the true friends you have made in this world that you exist in. The real ones, sadly, live too far away for the occasional lunch or dinner. But they're there, and they are real.

They represent the support you need and the circles you WANT to play in. The ones that open wide, take you in, and never ever make you feel left out.

It's true, some of them out there DO ignore. Not everyone who is far away is all-encompassing and that stings too, but in a different way.

Because you've learned to shrug it off. To unfriend, unfollow, stop tweeting at when you get no replies EVER.

But when it's someone you relied on to be a connection in this non-virtual aspect of the virtual world? Then it sucks. You're allowed to say so. Or at least I am. For now. 

And then you move on.

I do. I did. Keeping that tie, but hiding that bullshit. Because there's no reason to torture yourself with people who don't care, or like you enough, to include you. The tie is enough for now, but soon you'll let it slide. You'll cut that string. Loosen the ribbon. Let it go. You'll feel a lot better. But for now you'll smile and just know. And take it from there.

If you can relate to this I'm sorry. I'm sorry you have felt it, too. Because it stings. And it's okay to say and feel so. You're not alone. I'm not, either. I just needed to say all of this anyway so I could feel better now.

At least just a little bit.

Something awful happened yesterday.

Suddenly looking through my Facebook and Twitter feeds I found out that there had been several explosions at the Boston Marathon. 

Explosions. Injuries. Fatalities.

Unfathomable situations to consider.

Social media is incredibly informative. We learn news in the blink of an eye, but just as quickly we can receive misinformation and find ourselves giving out incorrect details because we want to share and we want to help. 

Social media can also be terribly triggering when it comes to disasters such as these. Sometimes we cannot handle what is happening in the world. Stories such as this horrible tragedy in Boston trigger dark thoughts for many of us. We get stuck in that mindset and can't push it down.

These are perfectly normal reactions to a tragedy such as this one.

But it's also totally okay to WALK AWAY.

We want to remind you that it is perfectly acceptable and often REQUIRED to walk away from the news stories. YOU are most important here. Yes, it's a horrible thing. Terrible. Emotional. Anxiety-provoking. But you need to know that if you are overwhelmed with the news you do not need to watch it, read it or listen to it.

Don't look for it. You'll hear it all eventually. It's not critical for you to know immediately what is happening.

Nobody will judge you for not participating. Nobody will ask you if you watched the Anderson Cooper show or read the latest AP News information. There will be no quiz here. 

Social media IS amazing. But sometimes people just jump feet first without actually thinking or researching. And pictures that do not need to be seen get tossed about. Horrible. What for? Nobody needs to see that. Especially you.

If you are a parent, you are probably protecting your child(ren) from these things. There's no harm in protecting yourself, as well. I would recommend you do it. 

I remind you, because I know that in times like these we often forget, that taking care of you is most important here. Avoid triggers. Close the laptop. Take a walk. Play with your kids. Eat something chocolatey. Dance around your living room. Sing your favorite song. Buy yourself a fancy coffee. Cry if you think it will help. But don't hole yourself up with the footage. It's not healthy and it's not necessary. Because we want you to take care of you. We want you to remain safe. And we want to help keep you that way. 

If you find yourself looking for answers or resources, please consider reviewing some of these Band Back Together resource pages. And if you need to, reach out. We're here.

Post-Traumatic Stress Disorder Resources

Trauma Resources

Fear Resources

Emotional Shock Resources

Anxiety Resources

We, The Band, keep the people of Boston in our hearts today and in the coming days as they face the aftermath of these horrible events.

Okay, maybe not.

The fact that I love my husband deeply might cause problems.

And I noticed you already had a wedding band (don't ask me why I noticed, I just did. I was single for a long time, sheesh). But there must be some way to show the world how deeply I esteem you. How deeply I appreciate you. You have made our family so happy. You are one great doctor.

Are you all wondering whether I've had liposuction? Or maybe if my colitis has been cured? Or that I've grown five inches? No. Dr. Adler is neither a plastic surgeon nor a gastroenterologist. Dr. Adler is a pediatric neurosurgeon.

Last month when we brought Lovebug in for his 12 month check up, his pediatrician was worried about his head shape. Specifically, that the plates might have fused too early. Unfortunately, we were moving less than a week after the appointment so we had to get it checked out in New Jersey.

The pediatrician here was also concerned. He wanted us to see a neurosurgeon - to skip the in-between step of the neurologist altogether. Naturally, our insurance is not accepted by most doctors in Bergen County. The ones that did accept our insurance could see us in October.

By that point, I had done some research. While Lovebug's head did not resemble any of the misshapen heads of babies with craniosynostosis, I was still worried. If they did not fix it soon, there could be pressure on his brain. The pediatricians had barely talked to me about anything else, like his behavior and whatnot, so worried were they about his head.

So between my mother talking to her doctor, a doctor he knew (and his kind appointment maker) and me talking to my insurance company, we found a pediatric neurologist. I made the regular pediatrician give us a referral to the pediatric neurologist.

Yesterday we went to our first appointment. Dr. Adler came out to the waiting room and brought us back to the exam room himself. He was warm, kind and clear.

He chatted with Lovebug and felt his head. 

Dr. Adler explained everything in layman's terms and even offered to show us pictures of babies with real problems on his computer. We declined, having already seen them. The bottom line was that while the space between Lovebug's skull plates may have fused early, this had not affected his head size (which is very large, to tell the truth), his head shape, or his behavior (since he walks, talks a bit and does not have seizures).

Dr. Adler declared him perfectly fine.  

After imagining MRIs and CT scans, rounds with specialists and surgery, yesterday's appointment could not have gone better. But if something had been wrong, you can bet for damn sure that I would want Dr. Adler to fix it.

***

I wrote this post nearly 6 years ago. It was the first time I shared something that really worried me publicly on the internet. I will always appreciate the kindness that my few readers showed me back then. Even though I can barely remember the worry and anxiety I felt back then, I still remember the kindness. I hope that anyone contributing their stories to Band Back Together gets to feel what I feel about this post: grateful for the kindness and barely able to remember the pain. 

Separately, mental illness and chronic illness are difficult to deal with. When they occur together it can be even harder.

This is her story.

Why is it that a man can shave his head and have no one comment on it, but if a woman is bald it is a huge deal?

It’s just hair. 

Most people I’ve run into since getting my new ‘do just ignore it. After all, if you don’t mention it, it isn’t there, right? The few who have commented assume I have some sort of cancer and start with the “I hope you’re doing okay. Is the chemo going well?”

I started by using a simple answer of “I don’t have cancer, I just got carried away with the clippers” and made a joke of it. Then I started giving a slightly more accurate answer of “it’s not cancer. I shaved my head because my lupus rash was spreading to my scalp and it’s easier to treat.” People don’t like that answer as much. It’s not funny, and lupus isn’t a “fashionable” illness like cancer is.

No one wants to think of rashes. Rashes are yucky and make you think of oozing sores and things like that. And my talking about it draws their attention to all the things they obviously try very hard to ignore, like the sores and scars all over my face that I am no longer bothering to hide with make-up.

Yesterday even that answer wasn’t cutting it for me and I went for brutal honesty. Part of it was that I was in a very bad mood and was too tired to go anywhere. Part of it was that I am sick of how our society completely ignores mental illness in all its forms. So, when confronted with the “cancer” comment from a former friend/acquaintance I haven’t heard from in years, I told the whole truth. “I don’t have cancer. My lupus rash - which you can see here all over my face - spread to my scalp and I had to shave my head to make sure it was just a rash and not worms coming out of my head. Being sick like this makes it hard to control my schizophrenia and I just had to be sure.”

Yeah, that conversation didn’t last long.

I’m not sure I really give a shit. It’s just hair. I should be able to shave my head without it being a public issue. I shouldn’t be shunned because my illness isn’t “fashionable.”

Friends and strangers come out of the woodwork to rally behind you if you have cancer, but most of those same people will turn and run if you mention schizophrenia or bipolar disorder. This needs to change - and fast.

Unfortunately, those of us with mental illness are usually unable to stand up for ourselves. And our family and friends are too busy trying to pretend it doesn’t exist. 

The day has come.

I am going to be 30 in April.

I wasn't going to be one of those people who freaked out about turning the big 3-0. I was going to take the bull by the horns as it were and ride...or so I thought.

When I turned 20 I freaked because I knew I wasn't a teenager anymore. That meant I had to be responsible. Okay, so you're not a "real" adult until you're 21 (so you can drink) or 25 (when you can rent a car), but for some reason I went through sort of a mid-life crisis then. I know it's funny now; I can laugh my ass off and say "what an idiot."

But now? Turning 30? I'm freaking terrified. Here's why:

1. I am still single - not married, no kids. Most of the people my age already have one, the other, or both.

2. I am STILL NOT in the career I went to school for. I have a degree in Graphic Design and haven't had ANY experience at all in the field. I've been turned down for countless jobs because of that problem.

3. Thanks to said schooling, I am knee deep in student loan hell. Most the time I'm broke, just barely keeping my head above water.

4. I'm in a dead-end job. Honestly. I'm not going to sugar coat it - I really don't like it. Before this I worked nine years at a job that was just as bad, and ended up getting fired.

5. Oh and my awesome 30th birthday plans? They may not happen due to my car having a major flat and costing quite a bit for repairs.

I feel like I haven't accomplished anything great. The only thing I've done that's worth mentioning is that I graduated from college. I lived on my own for three years after the "roommate experience," and I lost 56 pounds in a year and so far have managed to keep it off. Wooo right on track!!

When I look back at my 20's I see a lot of hurt. Losing my last grandparent, breaking up with my then-boyfriend for the final time, putting my cat to sleep, Dad having cancer, moving out of my childhood home, then moving my parents out of it, putting Mom in the nursing home, losing my job and being unemployed for six months, losing my best friend, and most recently the death of my sister...

Right now my life seems to be at a total standstill. I've always stayed in Nebraska because I felt "needed." I never wanted to be too far away in case something were to happen - then I could be right here without needing to spend money I don't have on a flight home or gas money to drive. 

When asked, "Why don't you move?" the anwser was always the same: my family needs me. It's what a good daughter does. Dad just has me now. Mom sure as hell can't help and my brother doesn't understand so the decision making is on my shoulders just as much as it is on Dad.

Most women my age are picking out white dresses, china patterns, or colors for the nursery. Me? I picked out what my sister was going to be buried in, casket flowers, what was going to played at the funeral, and what kind of vase she was going to have on her headstone. There is no preparing for that.

Since my sister has passed I find myself wondering what I am supposed to do. Where would I go, and what would I do if I left? I feel like I don't have a reason to stay close anymore. I no longer feel needed.

I have always felt I have put my own life on hold because of what was going on with my family. My motto has always been "family first;" however, I can't keep doing that anymore. I'll never get anywhere.

Yet I have a low threshold for guilt.

On the other hand, maybe my 30's won't be as bad as I'm thinking. I am gainfully employed even if I hate my job. I am perfectly healthy, skinnier (no six-pack abs, but hey), I can wear the jean size I did in high school, and have not had a single broken bone or stitches EVER even though I am pretty damn clumsy. I have some pretty kickass friends and a super cute nine-month-old nephew. I will be getting my third tattoo soon - a memory one for my sister. I drive an awesome car and I have a roof over my head, plus my very own studio so I can create to my heart's content.

The rest is just details.

My 20's are actually the end of a very long era, and the more I think about it, the happier I am it's almost over. It's kind of like New Year's Day - a chance to start over and make things right. I'm sure it's not going to always be sunshine and lollipops but I will lace up my custom designed Converse kicks (this is what I really want for my birthday) and hold on.

I'm ready for you, bull - let's ride.