heading to mayo clinic

Mayo Clinic agreed to take me, and I have 5 upcoming appointments at the end of June - so in less than a month.

Apparently their process is to stack appointments in a short period of time, because they know many people are coming from far away. Mine include an appointment with the neuroendocrinologist and the neurosurgeon. I’m told that they could even go on to schedule brain surgery within days… but we’ll see.

All of this happened because I cold emailed the Lead Researcher of a Mayo study about the success of a new type of scan, the PCCT, in identifying the pituitary tumors that most often cause Cushing’s.

This was after I did a ton of work/hacking, really, for lack of a better word, to figure out how to essentially self-order a PCCT at Mass General where I’m insured.

Mass General - the Harvard-affiliated hospital - was trash at reading the scan and barely tried, though I sent the study with its detailed protocol to multiple radiologists and neurosurgeons there. Their poor handling of all of this makes me feel embarrassed about the state of American healthcare/America (on top of feeling horrified by the cruelty in it all, but more on that another time).

So I emailed the Mayo Lead Researcher to ask if they would read the scan instead, and he invited me to go to Mayo, and personally discussed my case with a neurosurgeon he recommended. This surgeon is so into pituitary surgeries that I was able to find an enthusiastic Reddit AMA he did in which he talks about how they bring him “joy.” The Lead Researcher, who is a neuroradiologist, also offered to personally protocol brain scans for me at Mayo.

I have a lot more to say about all of that - how horrible the experience of even finding good care has been, and how at times it took about all of my strength in this weakened state to keep trying, and I want to share it in a video soon…but I’ve been completely paralyzed in terms of publishing anything.

I’ve probably shot content for maybe 6 or 7 long form videos since I last posted one in November…and it feels virtually impossible to edit them.

Some of the issue, I think, is facing this fat body while editing. I barely looked in mirrors even before all this weight gain happened, and Cushing’s had made me morbidly obese since. But I don’t think vanity is necessarily a big issue for me, so it’s mostly not that.

I think the true issue has to do with some deep-rooted pain related to my family of origin in this life.

In the past, I was always staying 2 steps ahead of that pain: physically moving from city to city, “hustling,” whatever. I would “force” myself to do things way too often. I would also pour myself into various types of relationships where my value wasn’t seen, and that was another way to avoid diving into the deeper pain of this thing, I think.

Now, it seems like I can’t force myself to do anything. It’s like my body will no longer let me. I know this is a terrific thing, but it’s meant that the main, unhealthy motivator I had used to be “productive” is gone - and the new, healthier motivator has not landed yet. And so, for now, I’m sitting in one place and feeling all of this pain re: attack and abandonment from my original family.

As ever, the highest thing I know to do to heal this is Vipassana. And I can feel that Seeds truly soaring is on the other side of all of this healing on my part - both in body and in mind

I hope to be able to share more with you soon. But I won’t force it.

xo,

Rachel