GREY DAY UPDATES
Thank you for reading, I hope that you are doing well.
It is indeed a grey day and I am resting in bed doing some free form writing to share here on my blog.
Often as I go through this experience, I think I should be making videos to help others struggling in a similar position as I, living alone, on a budget, with extreme pain and complications due to a Spinal Cord Injury, navigating the medical system, hiring helpers on and on, staying calm without succumbing to anxiety from fear of tragedies and the unknown, finding resourcefulness and resilience from within, learning how to surrender here and there with grace, finding natural and gentle ways to self sooth, allowing the inner parts to grieve the loss or non presentness from family, allowing inner parts to grieve and be soothed by the great losses of close ones and partnerships that leaves one completely alone attempting to weave together day by day a new network of people who show care and love for someone in great need and with great love and value to share...
And then I think,
Making a video requires so much from me, and as much as I want to share these contemplations and solutions with others, as Ram Dass says:
"The real work you have to do is in the privacy of your own heart"
I heard this quote recently and it was a great gift for me.
I love that this grey day has settled me down in such a grounded way, so to write a bit in my blog and share it with you now.
As much as an update that I can provide now for anyone that is curious, here is what I have:
5 months ago, a few after moving into this little room of a shared house in the Ventura foothills, I was resting at night in bed, on my side with a pillow between my legs.
I leaned into the stretch a little too far, and felt a tear of some sort in my right hip lower back area.
After that and ever since, it has been THE most challenging period of my life, surpassing all of the most profoundly altering periods Ive gone through.
Still now as I lay here, I am awaiting for the proper medical attention for what is happening, as I have not been able to move from my bed and go through a day as I did before 5 months ago.
Its been 2 MRIs in the wrong area, not my my choice the wrong area, but drs not listening and observing properly, an X-ray of my leg which does not pick up sensitive tissue and nerves, but was painful to go through for no data collected.
Most of the day and night, I am laying on my stomach, and any arch of my back or sudden movement causes extreme pain through my back and entire right leg and makes it incredibly scary to move as I think I may seriously injure myself more.
I cannot sit up for more than 5 or so minutes without extreme pain and needing to quickly get myself back into bed.
Im losing weight, unable to care for myself as much as I should, not getting enough sunlight, movement, water or steady meals, its a very scary period of time.
Ive been told by doctors just to see a pain specialist, because they haven't found the new injury location on a scan yet, but they've been requesting scans for the wrong areas.
It is hard to reach out for help, to be respectful and yet be screaming inside because of incompetence and disregard.
I finally have a new order for an MRI in the more precise location where I feel the injury is stemming from, which is seriously debilitating me, and Ive been waiting for 3 days for the imaging center to get the drs order and still nothing has arrived.
With pressure by writing and calling to find out why the order hasn't been received, I just now at the end of the day on Friday discovered that they did not send the order to the write number.
It's hard to feel like I have to do the work for people who Im putting my trust in to help me at such a serious crossroads in my life. Now I have to wait three more days just to make the appointment.
Based on the 3 wrong scans Ive gotten, I have gathered at least some more information. I have evidence of a spinal condition called Arachnoiditis, I have evidence of degenerative disc disease and bulging in my discs around the lumbar area. All of this is contributing to the extreme chronic pain that Ive been feeling, but there is something else that they haven't found yet and by this new MRI, whenever it gets through, hopefully next week, I will be able to get transportation to the imaging center, by a service that helps me go on a gurney, because I am injuring myself more and more the longer I sit and each time I transfer is so hard on my hands and body, because the pain is all around my right hip and butt, and makes me feel nauseous with headaches like I will pass out from the pain.
It's a lot to try and explain this update, because Im still searching for the answers to share. It feels like I tore my sciatic nerve and my whole right leg and hip feels like it's literally hanging on by a thread. it's so painful. I don't know how Im going to survive long like this without the proper help.
My left hand is starting to be difficult to use because of a painful bone spur at the base of my thumb which makes it challenging to use the wheelchair and keep myself as mobile as Id like to be besides what is already limiting me.
I feel like Im going through new layers of loss and surrendering every day.
Managing so much on my own, hiring people to come in to be surrogate family and assistance, and they themselves have their own family and concerns to focus on. But maybe if I can bring in more money and share it with these new people coming into my life, they can provide me with the sense of care and being present and helping me make important life decisions, selling things, planning what to do, where I will go etc etc.
On a happy note,
I've been designing some new products using my Cats In Clothes artwork.
They are up in my Etsy store.
They are printed by great companies and shipped for me so I won't have to do the physical work. I encourage you to check it out, share with friends and family, and do some holiday gift shopping there knowing that you will be contributing to the wellbeing of someone who needs support. I will be adding more designs as they come through and adding them here and there. So far I've been creating one design every 3 days and listing them one by one. I ordered one of the Violet pillows for myself to see the quality and am pleasantly surprised at the fantastic quality and feel confident in offering them to the public.
As always, I am wishing you well, and grateful for your presence in my life.
Please don't hesitate to reach out and Im sending a lot of love.
(The image above, I also made, using Midjourney and plan on making products soon with my digital collaborative artwork as well. Its a beautiful outlet for the subtle fantastical realms of my imagination, which I love to share very much... so stay tuned!)