Posted in Uncategorized

My Own 24 Hours

On Sunday afternoon (which was yesterday although my brain continues to refuse to accept this fact, even after doing all of the Monday things), my cousin messaged me asking how my day was. I told her that I wasn’t getting as much done as I wanted to, but got more done that I had hoped for. There’s so much my brain wants to do, and my bodily capacity is not keeping up.

When she messaged me that, I was thinking about how grateful I was for the various people in my life that keep me accountable, and those around me that listen and empathize without judgement. I thought about the people in my circle that feel safe enough with me to tell me they’re feeling down and who I can safely share the same with. I was feeling a great deal of gratitude for those connections, and for the space I have been giving myself to not become mentally overwhelmed, even though I still felt a little guilty for not getting done all that I wanted to.

This morning one of my bonus Moms from childhood met me for a very hastily squeezed into my schedule late birthday lunch. I was late so our time was even more brief, but it was so good to see her and other family, even if it wasn’t for as long as I wanted. There I go over-planning again.

I’ve got deadlines and promises dancing in my mind, and sometimes they make me short of breath. My closest friends and family are my most avid supporters, and often ask me if I’m still doing this writing thing. I make a small, hesitant sigh while listing off in my mind the paperwork, business cards, and you know–actually telling people I exist part–that I am not doing and should be; and I say “yes, but not as much as I want to be. And I really should be blogging more.”

I’m stalling to buy those last few holiday gifts, and am still taking down Halloween decorations so I can put up my tree that I always put up and decorate on Dec. 1, and here it is 10:01 PM on Dec. 7… And I would typically follow that with some mental quip about how I’ve got to get it together. I’d be lamenting that the dishes aren’t done and I’ve washed the same damn load of laundry three times now because I keep forgetting it even exists!

But today, I don’t feel bad about ANY of that. Because today, on my very short glance into Facebook, Dawn Super of Going Beyond Coping posted this fantastic meme about people with chronic illnesses in her Positively Narcolepsy FB Group. The most impactful words on it for me were,

“…we all get 24 hours but they are definitely not. the. same.”

Dawn Super, author, blogger and vlogger at:, Going Beyond Coping FB Page, and the Positively Narcolepsy FB Group.

I mean, so timely right?! And then I saw another raw and honest post about how exhausting this all is from Momma on the Rocks, and I thought of all my lovely and beautiful family and friends, and all the things we are separately going through. All of the hard, different things, but we still keep going.

Over the past week I have been expressing to those around me that I am working on accepting that my level of production will likely not ever match that of my neurotypical, chronic-illness-free peers. And that’s ok. It’s still a work in progress, but I really can’t thank Dawn enough for her words.

Because the things I am capable of doing in my own 24 hours, well, those things are amazing.

Heather Romero, The Happy Typist

Please note, I am not sponsored by The Mama on the Rocks, nor Going Beyond Coping/Positively Narcolepsy. Nothing written here is a direct endorsement by either party and they may not agree with all I say. I am, however, deeply inspired by them. These were some of the people that shone light into my world again, through a glowing screen, when I thought all was lost and that the opportunity for my dreams had passed.

Posted in Mental Health

Relentless Pursuit–The Diagnosis Journey and How You Can Get There, Too.

Warning! This is going to be a long one. I hope it helps you! However, if you find it TL;DR then please know I have some breakouts coming. I love lists! 😉

On Tuesday, I told you where my relentless pursuit of diagnoses for my children, my spouse, and myself has brought me. However, I didn’t tell you what that journey looked like, or even the actual length of time I’ve spent in that relentless pursuit.

Let’s talk first about time. I am still in the process! In particular, for my children. This pursuit is constant, and requires vigilance, a lot of research, social support from peer parents, and being your child’s unrelenting advocate. Your children are still developing, and so things are constantly changing. Unfortunately, many things like ADHD and ASD present differently in girls, making these diagnoses even harder to confirm. I will delve more into these issues in a later post.

I am going to assume that you are here because you are an adult who knows there is more to your story. You’ve struggled your whole life. You’ve been told you’re depressed, then you’re anxious, or maybe it’s bi-polar, etc., etc., etc… Those of us who have been on a journey to the proper diagnosis know that your diagnosis is this evolving monster that seems to change with each new professional you see.

I have been under the care of mental health professionals in some form, most commonly the combination of a regular psychiatrist in conjunction with a regular therapist, since I was fourteen. I acquiesced to their 45 minute assessment = diagnosis model for about fourteen more years.

When I was in my early 30’s my son was diagnosed with severe, debilitating, ADHD–like please get your child on some medication or he will not be able to attend to learn.  Like now, please. And also, he is considered high functioning on the autism spectrum disorder. And he has anxiety, and sensory issues, and delays, and dyslexia, and and and. And once I swallowed all of those terms I did what I always do with my anxiety–I researched. When I researched, I began to recognize, and like so many parents who seek help and diagnoses for their children, I began seeking my own.

At that time in my life I was uninsured, and was under the care of a sliding scale mental health clinic. I started to chirp at them that I felt that I needed some more in-depth testing. They chirped back no, we’ve known you for years, we know. As often happens with clinics like these, funding is cut, changes are made and there is an exodus of staff. I followed my therapist, she’s fantastic and I’m keeping her! I am blessed to have insurance currently and so was able to do that.

As I worked on my mental health I also began to advocate for my physical health. Discovered I had narcolepsy. Got narcolepsy treated. I’m still irritatingly, overwhelmingly, it pisses me off how much it robs me sleepy. But I am not depressed. And when I try to think, it’s easier than it used to be. (Qualifier–that does NOT mean it’s easy! Just that it sucks less than it used to!) And so then I thought, why in the hell have I been prescribed so many sedatives?! Pushback again, for the diagnoses that support what I know are issues.

I applied for social security disability. They denied me after their psych spent the requisite 45 minutes to get to know my whole life story and how life affects me, and his response was I’m not that anxious. Good frickin’ grief. Sigh… But quitting is not what I do. If I did, I would not be here to tell you this story.

And so they said no, I got a lawyer, we’re still fighting. Whatever. I still needed the answers I needed. I have insurance now… I’ll get my own damn eval. I called local psychologists (we have two). Made an appointment, got my eval. I believe that was the time that PTSD and ADHD were actually finally qualified. But he still said I’m too social, I can function in society. Head:desk. Seriously dude, I freak out on people in line at the grocery store because they’re too close to me! I avoid errands and phone calls because the pretending is exhausting and then I have a people-ing hangover. Ick.

I still can’t work a regular 9-5 because of the laundry list of physical and mental ailments. Finances suck… and so next. Next, I went to my local Department of Vocational Rehab office. And I signed up. And they’re helping me start a business that accommodates my disabilities while simultaneously supporting the fact that I have disabilities and need some damn stabilization! I asked for a more thorough eval and stated my case. I told them these mental health issues affect me in such a strong way and I need to know what they are so that I can get the help I need to make things better. And they listened! And they helped me obtain that grueling eval. And I got seven diagnoses. Seven answers. Seven validations that it’s not me, it’s me. As in my mind, beyond my control, me. Not lazy-ass, what’s your damage, get your shit together, girl, me.

I have been told by three different people this week that they’ve never seen anyone so happy, so joyful and abundant, so excited, about receiving all of these mental health diagnoses. And I told each one, it’s because he saw me! When I was given the report information, and saw that the doctor said that I am not social, I almost cried. I get misty eyed still, just thinking about it. Why? Because he SAW ME! And after all, don’t we all really want just that? For someone to see us for who we really are and get us the help we really need? That is tailored to us, as the individuals we are? Many parents of children with special needs get really good at advocating for their babies, however they often forget to advocate for themselves. Adults without children may be even worse offenders of not seeking the help that is needed. There is still a child inside of you. They need you to see them and listen, please don’t give up on finding someone who will.

Oh yeah, and quantitatively, about 6 years is how long it took from me first really asking for a neuropsych eval, to actually getting one that benefitted me and my future.