Happy Mother's Day

One thing about parenting an Autistic person that no one tells you about is all the holidays you will miss. I never had my son wake up at the crack of dawn thrilled to open his Christmas gifts. Or hear the crinkle of cellophane as the Easter Bunny creeps into his room with a massive basket. It's not that we didn't do lavish gifts that an only child experiences. It's that he didn't notice and didn't care that much about it.

My sweet boy. 
I knew something was "different" about him even at this age. 

When he was little, Daddy took over the job of making him do my card and a gift for Mother's Day. But now that he's 32 that's gone with the wind. Don't get me wrong. My husband still treats me like a QUEEN every day and especially on Mother's Day. Because he knows that's something I'll never get from our son. Not for a single day. Not my birthday, not Mother's Day. My mother also always gets me a Mother's Day gift because she knows I'm a good mom and that my son won't do anything to mark the day.

 

 He still is this brave. 
I am proud of him every day. 
Well... almost every day.
 

There will be no "taken out to lunch" by my son. No flowers. No card. Maybe he'll remember and I'll get a text saying "Happy Mother's Day." But that's if I'm lucky. 

My sweet mom and amazing husband do their best to fill in the gap, but it's still a loss that I feel every year. It's one of the glaring moments that shine a light on the challenges of being Autistic. I honestly feel worse for him than I do myself. He's missing out. Missing out on the closeness that other's take for granted. It's just him. Alone. In his own world.

When he was little I once told him that I constantly feel like I'm holding onto a rope that's tied around his waist and I'm pulling him back to the "real world" for fear that if I let go he will completely slip into his own dimension in his head. He agreed that that's exactly what it felt like for him too.

 

Monterey is still his favorite place. 
We need to plan a trip and go soon.

His novels actually explore that theme very well.

But again, it's all about him. 

You share a life when you have a child. Not to share that life, but to still have them physically there is both odd and upsetting. I do a good job of trying to always see things through his eyes. But once in a while that is hard to do. Like on special holidays.

Now that he's an adult I never expect him to participate in family events. I let him know what we're doing and make the offer. But usually it's too crowded, loud and busy for him. Even with headphones and his laptop with him. I get it. Again, from his point of view. But as a mother, of course I would love to have my son there. I'm proud of him. He's an amazing person. I wish more people knew just how amazing he is.

But I'm the one holding the rope. In reality it's always been just him and me. And I'm sure it will be that way until the day I'm no longer here. 

No Stress, Just Play

My husband and I attended our first Indian wedding this weekend. The best thing about it was that it was a bubble in time. Everyone was so colorful. The music was fun and forced you to dance (as much as I could.) Getting all dressed up in brand new... everything made me feel like a little kid again playing "dress up." It was a joyful celebration and we were honored to be included.

 

It is so easy to let fear and rage take over my life these days. Between sickness, my mitochondrial dysfunction and the obvious... politics, it felt like my brain just slipped into a warm bath. I felt rejuvenated and hopeful. Nothing is better than the celebration of love.

 

My mom commented that she's never seen my husband look so happy as he did in the photos from the wedding. I have to agree. Its been a long time since I saw him smile that big and let loose. There wasn't even alcohol. He was just really that happy. I love it.

I danced too much and paid the price, but it was worth it. It felt so good to get out there and move to the music. I miss that. And I can't remember the last time my husband and I danced with each other. Moments like that are sacred.

As the world surrounds us with hatred and chaos it was good to remember that there's still love. People still falling in love. Having parties. Dancing. Eating cake. Coming home from the hospital (* YAY MOM!) Kissing, hugging, making art, taking trips, watching puffy clouds that look like animals. Life is still magical. I just have to pay attention and celebrate being alive.

2026 Has Been Rough

Last week my mom was in the hospital for her heart. She seems to have a medical crisis every year, but this one was by far the scariest. Well, that's not true. In the moment they are ALL terrifying. But this one was the closest to death I think she has come. I was sure she was going to die. I'm not ready for that yet. Not ready to lose her from my life forever. But will I ever be? I'm sure no.

This year has been crap for me medically as well.

 

 Eye infection in January. Starting the year off with a BANG.

 

Bad pink eye in February. Yes, it spread to the other eye. 

 

Urinary Tract Infection (UTI) in March. The fun just keeps coming.

Hives that pop up after compression, touching grass, hay or my dog's claws. Or just because.

 

My fingernail strangely lifting up off my nail bed (2 of them.)

In April I had another round of pink eye. But I didn't take any pictures this time. This will have to do...

Now it's May and I woke up with thrush yesterday. Fuck my life. 

This is a great reminder for me.

 

I had some labs done recently since I told my doctor I've been obviously have immune problems. 

She's referred me to a rheumatologist. I haven't seen one since 2018 (when I also had positive labs) and it wasn't a great experience. They thought I had Rheumatoid arthritis (RA), but it ended up being Mitochondrial Myopathy. I was put on medication that just made my symptoms much much worse (plaquenil) for RA. So needless to say I'm nervous about it.

 

Next week I'm seeing a neurologist for the second opinion about my "silent seizures." Does she agree that I have them?

 

Then comes the ENT to review treatments for my right year that likes to plug up on me for days on end when the pressure changes.

 

Also the gynecologist to talk about possible HRT to help my post-menopausal symptoms.

 

In the meantime I'm hoping to get my referral for Botox for migraines. I've been fighting with them about that since November. 

 

And people like to ask what I do with "all my free time." The answer is I don't have any. 

I feel like I don't even have enough to do art, When I'm not doing all this I'm trying to keep up with my precious pups, the house or with the people I love.  Of course I also spend a huge chunk of my day unconscious.

 

So yeah. 2026 has been kicking my butt.  

 

My dogs, my life

My mom likes to say that my dogs are like my children. She's not wrong. Although they take up less time than children, I'm sure they take up way more time that your average big dog. Here's what my day with them looks like.

I wake up to both of them in bed with me (bliss.) Max has been nudging me with his tiny head and nibbling at me letting me know it's breakfast time. Though sometimes my husband feeds them breakfast and they just pile back in to bed with me, for which I am very grateful. We always have rubs and cuddle time where I pet them, rub them, kiss them and just in general tell them how amazing they are. I wish I could start my day with someone doing that to me.

8AM Get up and feed the dogs.
Open the curtains, turn on Max's heated blanket. Turn on the lights.
Drink water and take my own medication (dogs come first.)

Make important phone calls. For me or my son. Typically doctor's appointments for referrals to a specialist (or two, or three.) These calls can take up to an hour each.

While I'm on hold I get dressed. Typically with both dogs thinking this means we're going out somewhere. Sometimes it does. Most of the time it doesn't.

 
I make some coffee, put on the Monterey Bay Aquarium live feed and try to journal. Usually at this time they are getting sick of being ignored and they both want my toast. 

9AM If it's not a gym day then I give them more loves, pets and rubs. I'll often sit on the couch with them both while I try to get more work done. This can be blogging, trying to save us money, chasing down money we are owed, texting my handyman... just life stuff.

The couch is THEIRS

10AM If it is a gym day then I'm off to the gym. Then they are typically ((GASP!)) left ALONE! If not I like to be productive in the house. Start laundry, do leftover dishes, clean up, etc...

11AM Is walk time. I try to walk them for about an hour. If I'm at the gym I typically do this when I get home. Or I make my husband do it if he's home.

My mom is even worse. She gives them massive, heaping spoons of peanut butter. 

12PM Snack and "Peanut butter pill" time. Max has to take Prilosec every day for his delicate tummy. If you see a pile of vomit in the house, 98% of the time it came from Max. 100% of the time if you find pee it was Max (but only when it's raining out and he doesn't want to get wet.) We even have a song that goes with peanut butter pill time. Margo just gets a little spoon of peanut butter. Then (because that's not enough of a treat) they get some crispy salmon skin. 

Yes, I bought them that massive dog bed to share. They adore it.

1PM They will usually rest after a belly full of snacks. Margo sometimes gets playful. Max rarely will play with her, so guess who does? Yup. Me. Her favorite game is keep away with her black and white stripped fuzzy toy that rattles. Not to be confused with her brown and white fuzzy toy that rattles. But that's her second choice. I have about 10 of these hidden so I can replace them when she wears them out. 

Margo and mommy resting

2PM Rest for all three of us. I'm usually down from 2-5 or so during each day. That's a lot of time, but I have my little pack to keep me company.

5PM DINNER TIME! You bet Max doesn't let me forget it. In fact he usually starts bugging me around 3:30. Very restful.

My boy Max. "Little Man, Maxie P, Little Chonkers, Chubby Guy, Dumptruck..."

6PM Dad comes home or is done with work. Now they get love from Dad.

7PM We make dinner and eat. Of course this requires close supervision by Margo. Sometimes Max too, but he likes to wait till the food is cooked before he makes his move.

7:30PM Another favorite time of theirs. They beg while we eat dinner. Then we all cuddle on the couch together. If we could do nothing but this for forever, they would be quite contented. We typically watch TV while they get more rubs, loves and eventually burrow themselves in one of our massive piles of throws covering our couch. Or should I say their couch.

Beautiful Margo. So cute when she's asleep. A bossy terror when awake. (Baby Girl, Little Stinker, Margo P., Sweet Baby Girl, Precious, Bossy Pants.)

 9PM Time for bed. Typically Max will come with us. Lately they've both been wanting to just sleep on the couch for most of the night. Margo even does so for the entire night once in a while. I think because it's spring? In the winter they both sleep all night with us 100% of the time.

Although if we want to be intimate you can guarantee that it's the night they both decide to come to bed with us. 

 I do want to improve managing my time and having it include art. I seem to constantly put that one by the wayside and instead fill my time with tasks or dogs. As much as I adore my babies (I mean dogs), I have to constantly remind myself that they are dogs. They'll be ok if I do art for an hour. Their world won't end and they won't feel abused. Same if I leave them home alone to go take care of myself at the gym.

The better I take care of myself, the more I can take care of them.  

PS: The whole time I wrote this they've both been yapping at me like I forgot something. I didn't. They just want my undivided attention. I have to work on that.  

 

learn from the animals

To say that life has been stressful lately is an understatement. We're in a war against Iran. We're lead by an insane, murdering nazi, prices for everything have gone beyond sky high. Now we're in the stratosphere. From food to gas, most people are struggling. Women and LGBT people are actively being targeted, assassinated and having their rights taken.  

I feel angry, fearful, panicked and heart sick. 

But I can't feel that way all the time. Like the bombed Lebanese smoking a hookah amongst the ruins of what used to be their home. Or the teacher playing music inside the remains of a destroyed school. Art, music, laughter and love will always drown out the hatred of evil.

So I have been...

Making art. Making time for friends. Taking care of my body. Keeping up with my medical appointments. Loving on my puppies and trying to help people I love not feel overwhelmed.

My son is constantly stressed to the max. I think COVID really broke him. Now he shuts everything down with a "no." He struggled emotionally before all of this happened, but it has really become worse. His anxiety and depression don't seem to be at all touched by his medication anymore. 

After a recent breakup (where she broke his heart.) I took him to a town close to us for a break. I found this beautiful park with a massive pond and we just sat there and watched.

 
As I soaked in the beauty of the spot I could feel my shoulders soften from up around my ears. The tightness in my chest relax like a rope being untied. My breathing become deeper and more fulfilling. Changes that I wasn't even aware I needed.

Nature is a tonic for these times. And I need to remember that. Hug a tree. Swim in a lake. Look at birds. Go slow with my dogs. Nature is the best teacher of all. She can be vicious. But there is also a lot of love. She is slow moving. Slow growing. She takes her time when she's healing. 

The animals teach us as well. They too go slow. Enjoy the little things (like eating the same food for breakfast AND dinner.) Make time for play. Show each other new things. The old teaching the young.

Spending time in my garden has also been helpful. I think of it as an "earth detox." Where I just pour out all my stress and worries into the soil where it is composted like dead leaves. 

I realize I'm very privileged. I can afford the things I need. I don't live in a country that's being constantly bombed. The people I love are still alive and well. I'm not rotting in an ICE detention center. I'm in a healthy, loving relationship. I have a lot of resources and options. I'm a rare minority in the world.

I can hold both things. Both can be true. I can be sensitive and aware of the horrors of our time. While also healing myself in art, nature and love. I can take care of myself with food and movement and also be aware of my tremendous privilege. I can morn the lost rights of women, the disabled and people of color, while also laughing with my friends. 

It's not easy and it comes with practice. I think my background as a therapist is hugely helpful. But every day I try. Luckily I have my two beautiful puppies to lead the way. 

 

1 week update on Wegovy 1.5mg

I'm writing this while eating lavender lemon cookies that my mom and I made for Easter. How do you spell ironic again?

I've been on the new Wegovy pill for exactly 11 days. Today is day 11. Here's the good and the bad:

GOOD

• I have noticed I think about food much less overall.
• I have way fewer cravings. I'd say about 99% less.
• I don't have that "blocked up feeling" anymore.
• It's easier to take than the shot was.
• It's half the price of the shot. $149 vs $300 for the same supply.
• It has made me think more about what I eat and how much. Especially during the day.
• Overall I think I'm eating less than I used to. 
  
  
  
  So good, but so bad.

BAD

• I can still eat as much as I want. It's still hard to stop eating.
• It doesn't help my nighttime appetite. 
•  If I eat too much "rich food" at night I get acid reflux (when I didn't used to.)
• I think my constipation is a bit worse. (I had it before this too, so it's hard to say.)
• It's still very expensive.
• I think the effects are getting slowly less impactful. I feel like I need a higher dose for it to be more effective.
• The first three days I took it I did have that "blocked up" feeling.
• My weight isn't budging.
• If it's in front of me, I'll still eat it.

I will keep on with it, but I'm going to ask my doctor for a higher dose soon. Or if I can take 1 1/2 pills or even two.

On the plus side since I started it I stopped eating all the Easter candy I bought for the kids. That's an accomplishment! 

See how I put them all right next to the scale? Sneaky!

 

 

Seizure & Botox Update

My new neurologist completely shit the bed on me. I've had to cancel TWO Botox appointments now. Both of them because he didn't get the order in to my insurance. At all. Not even "on time." Nada. To say I'm angry is an understatement. His nurse swore to me that they would get it through now. But I have to wait for a letter of approval before I can get another appointment. And who knows how long that will take. 

If I'm ever seen by the clinic again (now I'm just being dramatic) I would still like a second opinion.  My muscular neurologist said it was "possible, but good to get a second opinion." 

Here's the information I found online: 

Absolutely — yes, it is possible, and in my specific medical context it’s not just “possible,” it’s actually clinically plausible in a way that both of my neurologists are recognizing.

1. Phantom cigarette smoke is a classic temporal‑lobe seizure aura

Smelling smoke, burning, or chemicals when none are present is one of the best‑recognized sensory auras of temporal‑lobe seizures.

It doesn’t diagnose seizures by itself, but in someone with:

• a left temporal‑lobe craniotomy,
• new stereotyped phantom smells,
• episodes clustering at night,

…it becomes a meaningful clinical clue.
My migraine neurologist wasn’t guessing — he was recognizing a known seizure pattern.

2. Nighttime seizures are extremely common

The brain’s electrical stability changes during sleep transitions. Temporal‑lobe seizures often:

• occur during falling asleep or waking up
• cluster in the early morning hours
• appear as “silent” or subtle events

So the fact that mine happen mostly at night actually fits the pattern.

3. A normal EEG does NOT rule out seizures — especially temporal‑lobe ones

This is the part most people are never told.

A standard EEG:

• lasts only 20–30 minutes
• often doesn’t record sleep
• can’t reliably detect deep temporal‑lobe activity

Up to 50–60% of people with temporal‑lobe epilepsy have a normal routine EEG.
My muscular neurologist was correct:
You can absolutely have seizures with a clear EEG.

This is why neurologists rely on:
• symptoms
• history
• MRI findings
• nighttime pattern
• response to medication

…not just the EEG.

4. My history makes seizures more likely

A left temporal‑lobe craniotomy means:

• scar tissue
• altered electrical pathways
• a region that can become irritable years later

Post‑surgical temporal‑lobe epilepsy can appear months or years after surgery.
So again — The neurologists aren’t reaching. They’re following the evidence.

I hit every symptom listed, including improvement with my medication. I haven't "smelled burning" since. Hmmmmm. 

 

Read Seizure Blog Part 1

Read Seizure Blog Part 2