Happy 2018!!

Off daily opiates: 3.5 years

Daily Shots of Vitamin C: 5 years

Happy New Year 2018!

 Ringing in the New Year with Silicon Beach techies ... Fabulous!

Ringing in the New Year with Silicon Beach techies ... Fabulous!

1st Shock of 2018 

I had begun studying Japanese in 2016, because my brain was trashed from all the years of opiates, and a lifetime of that impenetrable EDS brain fog, sleep deprivation, isolation, doing nothing but surviving pain. This disease makes you stupid in many ways.

I enrolled in Japanese 1 in community college because it fit my schedule. I have absolutely zero exposure to the Japanese language. 

Studying Japanese was torture.

I remembered almost nothing no matter how much I studied. Every time I opened my textbook it was like I had never seen any of it before. I got easily confused and lost my place in class, which made me a nervous wreck. My brain was tuning out and tuning in, not under my control. 

Sitting in a classroom, doing homework and tests, I found myself getting pummeled with flashbacks of being an ignored, desperately sick child, barely able to function in school growing up. Those memories were shocking to me. I did not know they were there. It was so intense, I would feel suicidal before Japanese class. I have a lot to say about my brain rehab and treating PTSD, and those posts are coming. 

It was all going so badly, I also enrolled in conversation class at Fuji School, just trying to get my foot in the door with thinking. Oh yes, and Japanese, too.

 The kanji for rain and water.

The kanji for rain and water.

I trudged on. I made a few friends. I found a Japanese professor I liked, and I followed him over to Los Angeles City College where I finished Japanese 4 in May of 2017. I am not someone who gives up, and he was very funny. I had become able to learn (Yay!), no longer felt suicidal before class (Yay!) and rarely lost my place during it anymore (Yay!). I was completely burnt out on Japanese and stopped studying for months.

Since I am very competitive and have a huge ego, I signed up for the December 2017 Japanese Language Proficiency Test Level N4 because friends from Japanese class were doing it, too.

When I took my first practice N4 test, I could not score higher than 25%. I hauled myself back to Fuji School for all the tutoring I could squeeze in before test day. I cancelled all my plans and did nothing except study in those last few weeks, to see how much I could push myself and how close I could get. I got my practice test scores up to 65%. Japanese is a difficult subject to cram.

 Getting schooled with 典子先生 at Fuji School。

Getting schooled with 典子先生 at Fuji School。

I blotted away my happy tears when I arrived at Cal State LA with my sharp No. 2 pencil to take the test. My brain and body were both working. 

I ate dark chocolate and salt during the breaks. I walked up and down the stairs to get blood flow to my brain. That test was so hard, I was sure I failed. I did not care. I was so happy that I could show up and make such a respectable effort, after a lifetime with my degrading, humiliating BFF, Ehlers-Danlos.

Results came in January 2018.


Screen Shot 2018-01-24 at 3.24.33 PM.png

What? I passed? 2018 was off to a good start!

2nd Shock of 2018

In January of 2018, my charming endocrinologist got me a ride on the bone density machine that will replace the DEXA. His rheumy friend in Beverly Hills has one. Wish I had a pic. It looks just like the current DEXA. The new machine estimates bone quality. The DEXA currently in use is not very accurate, especially on EDS bones.

 Bone Quality Normal

What? Was that another fluke? Or should I not be surprised?

I exercise like a real man: Weights, kettle bells, TRX, etc., although I love girly exercise like ballet or running in place like the welder/stripper in Flashdance.

Pretty much everyday, I run forces and vibration through my skeleton in every which way I can. I carry as much as I can, walk as far as I can and do it all as safely as I can, every chance I get. Click here for my exercise tools

Aggressive load-bearing diverse exercise was a calculated risk. I did not know if this would beat-up my joints, make my arthritis worse, accelerate joint destruction and bring on future disability sooner. I have constantly worried it would. With every ache from exercise I assumed my joint damage was getting worse.  

I decided real exercise was worth it, even if I sacrificed my joints to keep my bones strong. After all, hip and knee replacements are great surgeries. A broken hip can be a bigger problem. Plus the stronger I got, the less pain I had, so that made me persist over my worry. Even those EDS headaches from neck instability stopped happening. Real exercise: Totally worth it!

I have more to say about bone health, because at one point I was diagnosed with osteoporosis based on the current DEXA machine. Those posts are coming.

3rd Shock of 2018

February 2018. It’s that time again. Time to get my problem joints x-rayed. We do this every two years or so. I hate it. I was going to skip it, postpone for another year. It is too scary. I want to enjoy my life and not hear any bad news. Dr. Plance made me go.

Previous x-rays showed arthritis in both hips, both knees, spine. 

 Chic gown property of USC Verdugo Hills. 

Chic gown property of USC Verdugo Hills. 

When Dr. Plance went over the reports with me, I almost cried. I grabbed him and hugged him.

“Don’t do that! I can’t write!” He yelled at me.

No Arthritis in Hips.

No Arthritis in Knees.

No Arthritis in C- Spine or L-Spine.

Less Arthritis in T-Spine.

Where is that radiologist?

 Back at USC Verdugo Hills. The radiologist asked for a few more views.

Back at USC Verdugo Hills. The radiologist asked for a few more views.

I want to find him and give him a 💋for every time he wrote:

Joint Space Normal.

No Acute Disease.

I was completely shocked. Should I not have been surprised?

Testing for Inflammation 

In late 2017, my blood work showed this lovely HSCRP level. This is an indicator of inflammation in the body. Mine is nice and low. That was a good sign.

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Note to self:

Continue all healing inducing activities

Next posts about what I have been doing to help my body heal.