#spinal instability

I’m raising money for my soul sister Arlen, who is very sick and lives alone. She has severe ME, CCI, hEDS, and a multitude of conditions caused by complications. She can no longer tolerate food, and she relies on donations to sustain herself with oat milk.

She has an appt on March 21st where hopefully they will schedule port surgery to give her access to TPN!

THIS IS WHAT SHE NEEDS TO STAY ALIVE. Without it, she will die.

BUT we need $250 urgently to pay a month of insurance debt or the appt will be canceled.

We have been waiting for this for years! We can’t give up now!

Click this link for her amazon lists and gofundme:

SAVE-ARLEN.COM

Venmo: @ArlenDaza

PayPal/Zelle: [email protected]

Cashapp: $ArlenDaza

Please donate, and share, share, share!

We need to break out of our echo chamber.🙏🏼

And follow Arlen at @mienfermedadinvisible!

Will you dobate $10 today? The race is on to raise enough before it’s too late. We have 4 days!

This is the instagram post we made, you can help by commenting, liking and sharing it!

A lot of us get a lot of crap for being ambulatory wheelchair users. And you know what, that is bull crap! Most wheel chair users can walk or stand for short periods of time. I am one of those wheelchair users. 

I am able to walk short distances and stand for a short while as well. But, does that mean that I don’t need my chair? Of course I need it! I can’t walk long distances for a multitude of reasons. Some of those include; Dizziness, fainting, vertigo, joint instability, fatigue and pain. (There’s more, trust me.)

People use wheelchairs for a variety of reasons. So, if you see somebody in a wheelchair stand up or move their legs around, don’t make a huge deal about it. 99.99% of the time that wheelchair user needs that wheelchair. They are not faking. They also don’t need to disclose to you why they need that chair. 

So, instead of making a huge deal or saying that, “Wow, look a miracle!”. Just go on about your day. Like I said they need that chair for whatever that reason may be. 

Video description: Video of an Afro-Indigenous nonbinary femme during various periods of his life. Aster has light brown skin, dark brown curly hair, and a fluctuating body size. The song is set to "wildflower" by Billie Eilish.

Billie sings, "I should put it all behind me, shouldn't I? / But I see her in the back of my mind / All the time / Like a fever, like I'm burning alive / Like a sign / Did I cross the line?"

There are several clips in this video:

1) A photo of Aster leaning on his rollator in a doctor's office exam room.

2) A video of Aster doing a roundoff back-handspring a few years ago

3) A video of Aster doing an aerial landing onto a trampoline

4) In this video, Aster does a back-walkover

5) Aster does a calypso leap

6) Photo of Aster doing a standing pike stretch with straight knees - part of the Beighton score

7) Photo of Aster showing that his thumb can touch his wrist

8) Photo of Aster with his elbow outstretched to show hyperextension

9) Photo of Aster doing the splits with his head tilted back

10) 3 photos of Aster in the hospital more recently

End description.]

like i now have someone to talk to who completely understands the experience of your head trying to fall off, and we can share tips as two people in cervical collars 24/7

and then i have someone who is bedbound like me from the same symptoms but also knows and relates to my mental health problems specifically and deeply, who understands having daily panic attacks and OCD spirals, who understands that I will break down the second there’s tension.

they both also understand the magic of pink and purple and colors, sparkles, rainbows and magic and that’s so special.

1st Major Surgery

1st Neurosurgery

Occiput-C2 spinal fusion.

We are officially 1 week post op. And there already has been so many improvements. For once I can say that my new normal is better than my previous 'Normal'.

My gait has improved so much to the point where I no longer need to use my cane inside of my own house. My right sided weakness is nearly completely gone. My nystagmus is also almost completely gone too. My daily headaches and migraines were instantly gone. My hands are slowly growing more and more functional.

I however, have not noticed a difference in my dysautonomia or Gastroparesis/intestinal dysmotility. However, this is pretty early on yet too. So we shall see where this will take us.

My neurosurgeon said it will take about 1 year to notice the full effects of the fusion and at around 3 years for my spine to completely fuse. And yet, we already have so many improvements. I'm happy with how things are going for once.

So, my main physical therapist tested me for Atlantoaxial instability with the purser test.

Wellp.

When she turned my head off to the side she literally felt my vertebrae sublux. Needless to say. It was a positive test for AAI. I will be letting my new neurologist know about these findings as well as my increase in symptoms over the last year. Between neurological problems to things like pain and migraines.

But, at least we have a better idea as to what's going on. I'm definitely going to be asking for a rotational CT and an updated flexion and extension X ray or MRI.

I also wrote down all of my symptoms in relation to AAI. And especially noted that my symptoms improve when wearing a cervical collar. Also, symptom wise in regards to my AAI have been getting worse. I've been needing to wear the brace more frequently. Even though I've been in physical therapy for years now to stabilize my spine, it honestly hasn't worked out.