Professional Patient

Good morning. It’s Professional Patient Day. This morning I am rarin’ to go…first stop, consultation for orthodontist for Robyn.

So! Braces will start this summer after Bobbi’s east coast trip. Yay, 6k. That rhymes.

Dropped Robyn at school, made it to ENT F/U appt @10:15.

Cough therapy scheduled for tomorrow. Cough has been worse last four days. She peaked in my nasal sinus and saw pus. Yuck. Cednifir 10 days.

Noticing such swelling in my feet and legs. My hands large and joints painful.

Home for a second. Mail post. Drive to Round Rock. Appt @14:15 w Anthony. 

Still energy – bouncing​ off the walls

Anthony gets the whole story of the month: GI, GYN, HRT, MD, PSYCH NP, ENT, CT, SI & ABX, NEURO, ONB/TPI, EMDR. I am so blessed to find him; he never gives up on me, he’s encouraging and understanding. 

And then I can talk to him about Karen. Anthony has been following the story with interest. His wife is an ED victim. He has quite an appreciation of the struggle Karen endures. Since he’s been right along side his wife, supporting her. He is so sad to hear the updates. He doesn’t understand how any surgeon would touch her. The only reason I can guess is money. The surgeon knew someone would cut her….at the persistence of her mental illness and her sick mother….why shouldn’t he make the dime if there’s a sure thing? I appreciate his honesty and input. He tells me about a place in Arizona – Remuda Ranch – where his wife found wellness FINALLY at age 21.

I finish up and am back in the car to get to Westlake for Lisa’s appt. My RA is getting angrier. Legs swol, hand joints tender, aching thighs, back, hips. I arrive in good time (rockstar patient 🌟).

Nick texts me during during appt: Can you bring my tech shirt to the school? Geepers catz, like I have time and stamina for this? Lord, protect me.

There’s a traffic drive home from Westlake…a stop at the pharma. Grab Nick’s shirt at home and drive it in.

My feet and RA are getting progressively worse. So uncomfortable. Must get home for green tea, manesium soak. I can’t go running inside the high school, chasing the boys around to present Nick his shirt he forgot (even tho it was fresh and ready this AM, left conveniently on the banister).

Marc shows up and runs the shirt inside. I can go home and soak.

By night time, I’m pretty sure that​ the swelling symptoms are progesterone related. I will stop progesterone pill and message GYN. No dinner tonight… Just leftovers for Marc and Robyn since the boys are at theater. I start my antibiotic, take a detox bath and go to bed.💜

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Prospect: EMDR for CM

I just set up an appt for EMDR for Chronic Migraine. The gal sounds pretty cool. She trained with a dude in N Cali who worked in an ER and was able to bring patient’s migraines from an 8 to a 0-3 by using EMDR, breath coaching, neck trigger points and cranial compression. She takes my insurance. She believes much of the migraine pain is exacerbated by the associated feelings of guilt and anxiety. I see her May 3.

So… I’m pretty excited. I’ve done EMDR before and I like it. But … I’m feeling a little uncertain about her claimes. And 8 to a 0 with no meds? Pain is caused by guilt? I gotta tell ya…I’ve had migraines a very long time. And her words made me feel a little bit like “it’s all in your head.” I don’t like that feeling. Even now, it’s storming outside …My head is a wreck – just a storm of pain and medicated pain. I’ve taken a Maxalt and Norco and the pain is only a 4-5 now. But my head is so hot. And I know the migraine is still holding onto me tightly. I’m very calm. Puttering around this morning. Feeling some gut relief so I’m thrilled to shower.

But…In the back of my head…I’m feeling shamed.

I will go into it with 110% effort, support of friends and faith and an open mind.

This afternoon, I went to my scheduled medical massage. I was in so much gut pain, that I had to interrupt the session twice. Pain and pressure. But I started having a panic attack. Then the tears started…I had to leave. Lisa was very understanding and kind. I was balling and apologizing. One of the worst experiences ever. Back on bed at home. Migraine this AM and so much pain and feeling AWFUL.

Breaking point.

I watched the little robot clean today.

I ran my ice down…Can’t get it cold enough for my head.

Heating pad on SIJD today. Gut improving. But still…So much gas cramping and pain.

Maybe I’ll be better tomorrow.🌞 Surely next week.🌞🌞

I lost my cool with Nick today. He pushed me over my breaking point. Maybe becuz I’m hurting. Maybe becuz he’s run out of chances. Maybe becuz I’m a bad mother.

Swearing and screaming at the computer again while gaming. So. Loud. So. Stupid.

He didn’t answer my call to him to reprimand him. I went upstairs and told him to get off. He was sassy and rude. I started turning off the computer. He was more sassy. I started pulling the computer apart and this is where the tiny thread holding my sanity snapped. I threw a little roller desk chair at him and slapped his face. He continued to mock me. I screamed at him: Stop it! Stop it! Stop it! Stop it! Left the room, went to my room, texted Marc who couldn’t help cuz he was in transit on the way home. My left eye was twitching from insanity. 

I calmed down and wrote a list: Nicholas’ Rules for living in this house. I came up with 10. In there he’s lost computer ​gaming altogether. Deleting his STEAM account. So sad. It was something they all enjoyed. But Nick must be some kind of stupid a**hole.

Nine months. Nine months. We’ve been saying: 

Stop swearing and screaming at the computer. Stop swearing and screaming at the computer. Stop swearing and screaming at the computer. 

We talked about ways to deal with his anger and frustration. We practiced them. He promised to do better. He didn’t.

Stop swearing and screaming at the computer. Stop swearing and screaming at the computer. Stop swearing and screaming at the computer.
We took away privileges. Smaller to bigger. We talked about his anger and frustration. We talked about how to handle it. How to step back. We discussed the fact that it’s only a game. And he promised again. And failed.

Stop swearing and screaming at the computer. Stop swearing and screaming at the computer. Stop swearing and screaming at the computer. Stop swearing and screaming at the computer. Stop swearing and screaming at the computer. Stop swearing and screaming at the computer. Stop swearing and screaming at the computer. Stop swearing and screaming at the computer. Stop swearing and screaming at the computer.
Well…I guess we all discovered my breaking point today. And ooooo, was it fun. Marc joined in to help. He even lost his temper with that idiot kid.

I apologized to Nick and read him his new list. Marc printed off a list of 100 simple manners for Nick to study.

I believe the computer is the culprit. It creates this Nerd Rage in some of my kids. That’s so freaking STUPID. Just STUPID.

 Have kids they said. It’ll be fun, they said.

I totally suck at it.

GYN ed

Life is never dull. I started my low dose HRT today.

Today was Rheumy appt. Talked to Tina Bunch about Traci’s colon cancer…Is Humira (or other biologics) causing cancers? She was reassuring. I’m staying on Humira.

My head is a wreck. The weather goes in and out several times a day. Sometimes I think my gut is doing better with the Zoloft and then – nah, it’s not.

Ran an intense party for my biz today all day as well.

I’m tired. I’m irrelevant. I’m not good enough.

GYN Update

Doc appt yesterday. *shock* GYN follow up on hormone levels. Hot flashes are better but they had to mean something, right? Whatever. I wasn’t concerned. GYN is only a small piece in my medical grand enigma.

GYN came in and told me the lab results surprised her. Apparently, I AM in menapause at age 44. So weird. She’s prescribing low doses of estrogen and progesterone for short term HRT. Maybe they’ll make me skinny and pain-free? Ya never know.

Bad day with fluctuating weather. My gut is still sad and tantruming for unclear reasons.

Look. A waiting room @ doc’s office. Huzzah.

Waiting for doc in exam room. I love getting to rest on the table.

My face when I found out it’s menapause…

I feel a mix of emotions:

Good: maybe this will improve my migraines.

Sad: I thought this was something my daughter and I could share at least a few years longer.

Bad: I feel OLD now. Truly a “ma’am.”

Good: once again, I’ve been able to self diagnose accurately and this affirms me and my relevance.

Good: perhaps the HRT will help me feel better overall.

Bad: this means I’m REALLY OLD x2.
Slept great. But had to get up once for GI. Full blown panic attack started. Had to lay down on the cold tile floor while it passed. I don’t think I am a *well* person 85% of my life.

Last night I was sleeping great. Woke up to deal with my gut. Before going back to sleep, had a full blown panic attack with nausea, diaphoresis, tunnel vision. Has to lay on the bathroom floor – the cool tile – until it passed.

Awesome day

Can you see it?
Level 6-7 migraine. Another day of Migraine. My constant companion. Oh how I wish I could punch my head thru a plate glass window.

“Never Say Never”

Some things we don’t talk about
Rather do without
And just hold the smile
Falling in and out of love
Ashamed and proud of
Together all the while

You can never say never
While we don’t know when
But time and time again
Younger now than we were before

Don’t let me go
Don’t let me go
Don’t let me go

Picture, you’re the queen of everything
As far as the eye can see
Under your command
I will be your guardian
When all is crumbling
I steady your hand

You can never say never
While we don’t know when
Time, time, time again
Younger now than we were before

Don’t let me go
Don’t let me go
Don’t let me go

We’re falling apart and coming together again and again
We’re growing apart but we pull it together, pull it together, together again

Don’t let me go
Don’t let me go
Don’t let me go

Dreams…

I dreamt of my grandmother 2 nights ago.

I was never very close to her. She died from influenza and heart complications when I was a teen – about ~28 years ago. I remember not crying when it happened. This disturbed me so much; I thought something was wrong with me. I sobbed to a counselor in college about it. She looked at me funny, “Um, you’re crying right now.” 😨 Doi. I was! She said that my reaction was ok…Not everyone, even members of our family, are a devasting loss for us. I felt more as a source of strength for my cousin and mother at the time of the funeral. So that was my role.

I feel like I never really knew her. We’d rarely see each other, we never connected on anything but a social level. It was awkward. I did love her; I didn’t know her. She didn’t know me – well, besides what my mother told her about me. We shared no special experiences.

In my dream it was raining and nighttime and I was trying to find a parking spot at the hospital where my grandmother was a patient. I got to her room, and there she was…Standing in the room in a thin, white robe. She was obviously confused w dementia. I couldn’t really see her face. I took her gently in my arms and held her. And kept hugging her. It felt marveloous. I knew she was having glaucoma surgery soon for a very unstable (?) left eye, so I was very careful not to touch her face.

It was serene. It reminded me of the warm embrace of family. If there’s such a thing.
Then it got weird: her room was being watched and we found 2 pairs of super nightvision binoculars hidden in the shades of her hospital room. She let me have a pair. I was all excited about the idea of a gift from her. I couldn’t remember one before.

We’ve returned…

…From France. #KoboRomanceParisNormandy2017

I’m jet lagged. I’m mad at Air France & demanding a refund of 85 Euros. I’m trying to catch up with laundry, have faith in home insurance for our disaster leak & re-enter life. But most of all, I feel GOOD. Was it our getaway? Is it medication catching up? Idk. But it doesn’t much matter. I have a migraine. I’m still having bad gut issues (scheduled doc appt tomorrow) but I feel a calm. An Easter calm. 🙂

Living thru life

The industrial​ fans – I think there are 8 – blow 24/7. Wonderful, loud, irritating noise for my head. Hooray. They are blowing dust all over as well, probably from where they removed the kitchen ceiling. The ceiling. It’s fucking gone 😭 That’s fine. S’all good. My brain is just swimming. I have seen construction and damages but never anything like this. The kitchen rained poo water. It was amazing. 

Our home, my greatest place of refuge. The place I feel comfort, love and safety…Is broken. Broken. And so is my heart.💔