Jes Belkov Gordon

I haven’t posted as of late. I’m still much improved from the stuck in bed 24/7. I’m walking so much more. I have a ton of pain I’m learning to manage, but ANYTHING is better than the soul crushing fatigue! I still have PEM. But my energy envelope is so much larger. Here’s a photo dump from the holidays to waiting for the fam in the car the other night. Yes, I’m wearing my neck brace in the car. Always in the car. I trust Dr Patel’s fusion, but I don’t trust the instability below my fusion. Still fighting! Still improving!! Still have a LONG way to go!!! #pwme #dysautonomia #pots #posturalorthostatictachycardiasyndrome #heds (at Atlanta, Georgia) https://www.instagram.com/jesbelkovgordon/p/CYsGxy5MJVZ/?utm_medium=tumblr

I have so much of this tubing. You can’t recycle it (as far as I know) and I can’t bear to throw it away. I’m dying for suggestions or even assistance in finding a way for all this plastic to NOT end up in the landfill. HELP!!! #medicalwastenotwantnot #globalwarming #ecofriendlyhelp https://www.instagram.com/p/CYPyPAcMlQb/?utm_medium=tumblr

Happiest of Birthdays dear @minadjenkins !!! I feel so honored to be your friend! Love you!!! https://www.instagram.com/p/CWLyF9vrQbB/?utm_medium=tumblr

Went out to dinner tonight (sans wheelchair) with @alexgordonhifi to celebrate our 24 year anniversary!!! Love this man. We had a fantastic time!!! (at La Grotta in Buckhead) https://www.instagram.com/p/CWCZHbZs4D8/?utm_medium=tumblr

“We can endure much more than we think we can…” - Frida #fridakahlo #pwme https://www.instagram.com/p/CT-FJgkrAdx/?utm_medium=tumblr

Armrests - good! Paint - fun! Circles - practice practice practice! #pwme #chronicpainartist #chronicillnessartist #practicepracticepractice https://www.instagram.com/p/CTI2QKosYc1/?utm_medium=tumblr

Step one is putting paint to paper. It was all about overcoming the fear and trying out my new ergo arm rests. They WORK!!! I will have to see how I feel after a couple days, but I got to hang out with friends on zoom and give it a whirl! Today was just about (as @conniesolera would say) getting the junkie junk out. Junk released. It will be fun to play again! Pray that these rests did their job and I won’t experience increased pain! 🙏 #chronicillnessart #chronicpainart #findingmyway #mecfs #pwme #posturalorthostatictachycardiasyndrome #cervicalstenosis https://www.instagram.com/p/CSz2LyarHtX/?utm_medium=tumblr

Well, they say that the road to recovery is more like a twisting, turning road than a straight uphill climb. I’m trying to NOT feel like I’m on some kind of backward slide. . I passed out on Thursday, and it took over an hour to get feeling back in my body. I went to the ER, they did tons of tests and a CT scan. They were looking at my veins to see if there’s any stenosis, I don’t “think” anything showed. . It seems that looking down tends to aggregate my syncope. I also had a visit to the dentist that day. . I experienced literal paralysis for 45min - an hour? It was scary as hell. I felt like I was struggling to cling to life. This happened before when I’ve passed out, but I thought that it was my CCI, but most of you know, I had CCF - 3/22/2021 . I keep almost fainting. I’m scared to stand or walk. I’ve taken hyoscyamine 6Xs since I’ve been home for presyncope symptoms, trying to cling to consciousness. I was standing when this came on. So now my brain is telling me standing is bad. I know that’s not the case and I’ll be able to figure this out. . If I was home alone, I wouldn’t have had access to my panic device. I’m afraid to think of what would’ve happened if I was alone. I’m back to wearing the device I thought I was done with. 😢 This is all so frustrating!!! #pwme #cci #heds #pots #posturalorthostatictachycardiasyndrome #chronicillness #chronicconditions #mecfs #disability https://www.instagram.com/p/CSFI-YUspmZ/?utm_medium=tumblr

Cardio day! #physicaltherapy #ocf #occipitalcervicalfusion #recovery #icantbelieveicandothis https://www.instagram.com/p/CR2R2fPs46r/?utm_medium=tumblr

I got my hair cut and some fun color by my neighbor @sisterolivia ! I love it!!! And I love that I could WALK there on my own two feet! #itsthelittlethings #pwme #healing #selfcare (at East Lake Commons Cohousing) https://www.instagram.com/p/CRw8I26sDHB/?utm_medium=tumblr

Remembering that day (11 years ago) when I painted Klimt’s “The Kiss” on someone… #bodypainting #imisspainting #chronicillnessproblems #pwme https://www.instagram.com/p/CRuBuk9MjSA/?utm_medium=tumblr

Yes. This. It hurt today. And tonight. Let’s hope sleep comes… #recoveryisarollercoaster 🎢 #healing #ocf #occipitalcervicalfusion #pwme #physicaltherapywoes https://www.instagram.com/p/CRakXKls32K/?utm_medium=tumblr

Today is a rest day. I’ll still have to do my strength training for PT later, but all other “to-do’s” can get “to-do’d” tomorrow. #restday #selfcare #gentlewithmyself https://www.instagram.com/p/CREv3nQMW0y/?utm_medium=tumblr

The man who “fused my head back on!!!” THANK YOU DR PATEL!!!! #pwme #ocf #healing #standing #walking (at MUSC Health University Internal Medicine - Rutledge Tower) https://www.instagram.com/p/CQydKhsMw58/?utm_medium=tumblr

This was a year before I got a virus and was left with debilitating ME/CFS. You can’t say I wasn’t enjoying my life! Today is a slip back into the fatigue and pain, but it’s a hormonal slip, so I know it will pass soon enough. And my road to recovery will continue. This pic is what I’m fighting for… #upsanddowns #thistooshallpass #pwme https://www.instagram.com/p/CQom66VMHMz/?utm_medium=tumblr

Good-bye heavenly view! I’ve had a wonderful time in a beautiful place with fantastic company. I know how lucky I am!!! (at Blue Ridge, Georgia) https://www.instagram.com/p/CPQ3Hqjjatd/?utm_medium=tumblr

Looking for my voice... #pwme #chronicartist https://www.instagram.com/p/CPHcxRhjjZS/?utm_medium=tumblr