Important Medical Announcement
2 years ago
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Some of you that I talk to outside of public spaces know there's been A Thing going on. I have a limited spoon supply so please bear with me as I give the short version of the debacle.
August 2022 I had a seizure while watching tv with my partner. One minute I was laughing, the next I’m sitting up on the floor wondering how I got down there. Needless to say, I took a trip to the ER.
The ER visit was lackluster to put it mildly and after doing a blood test and checking my heart, they told me to see my primary care doctor. After assessing that the seizure (and subsequent seizures following) were not caused by any of my meds we agreed on getting a diagnostic CT scan without contrast. This is well after August and into the New Year as there were some complications with communication and scheduling.
On January 16, 2023 I had a CT scan and received the results the same day. What was found was an abnormal spot on the left side of my head in the mastoid region. The recommended next steps were to get a CT scan with contrast, meet with a neurologist, and go from there.
None of that happened.
Due to human error and negligence, communication setbacks, scheduling, and general PoC problems dealing with the Medical Field– it was months later before there was a resolution. It is a far more detailed story than I have the desire or energy to share in public, but just know that patient advocacy is extremely necessary and hard as hell to do for yourself. With all that settled and mostly behind me, I was finally able to schedule very much needed appointments. Which leads to the events of yesterday.
I had an MRI yesterday (April 27th), with and without contrast and the results conclusively showed a meningioma tumor on the left side (as suspected in the CT scan). Not sure how deep it is in there as I haven’t spoken to my primary doctor, but the size is about 1.5 x 1.4 x 1.3cm (a long grain of rice) according to the report from radiology. For months, I’ve read up on meningiomas and courses of treatment, risks, etc. and pretty much figured that’s what it was. After months and months of seizures and frustration, I have an answer and it feels FANTASTIC.
The good news is that this confirms I'm not having psychosomatic seizures related to CPTSD or trauma. Instead, the seizures and other episodes are because of this little shit causing them. I have a sense of relief and determination to face this thing like a lion.
The type of tumor (meningioma) is typically slow growing and benign with a 1% chance of being cancerous. We have a pretty extensive history of cancer in my family, so there is the worry in the back of my mind about it potentially being malignant. But I can’t stress myself out with the unknown and can only keep on moving forward until I meet with a neurologist.
With that said, next steps are seeing my PCP on June 8th and then the Neurologist on June 29th. They are both extremely booked up, so these are the soonest dates I could get unless there are cancellations. So until then, I really won't have much news to share, but I wanted to be transparent about what’s going on. I still have a commission backlog I am trying my best to finish, and I hope this doesn’t slow me down more.
If you are a client who is still waiting on a piece from me, please shoot me an email and we can discuss what to do from here. I apologize for the long wait and then this happening on top of it. You can email me at tempusobscura[at]gmail[dot]com.
Again, thank you all for your support and patience! I can’t begin to tell you all how much it really means. <3
August 2022 I had a seizure while watching tv with my partner. One minute I was laughing, the next I’m sitting up on the floor wondering how I got down there. Needless to say, I took a trip to the ER.
The ER visit was lackluster to put it mildly and after doing a blood test and checking my heart, they told me to see my primary care doctor. After assessing that the seizure (and subsequent seizures following) were not caused by any of my meds we agreed on getting a diagnostic CT scan without contrast. This is well after August and into the New Year as there were some complications with communication and scheduling.
On January 16, 2023 I had a CT scan and received the results the same day. What was found was an abnormal spot on the left side of my head in the mastoid region. The recommended next steps were to get a CT scan with contrast, meet with a neurologist, and go from there.
None of that happened.
Due to human error and negligence, communication setbacks, scheduling, and general PoC problems dealing with the Medical Field– it was months later before there was a resolution. It is a far more detailed story than I have the desire or energy to share in public, but just know that patient advocacy is extremely necessary and hard as hell to do for yourself. With all that settled and mostly behind me, I was finally able to schedule very much needed appointments. Which leads to the events of yesterday.
I had an MRI yesterday (April 27th), with and without contrast and the results conclusively showed a meningioma tumor on the left side (as suspected in the CT scan). Not sure how deep it is in there as I haven’t spoken to my primary doctor, but the size is about 1.5 x 1.4 x 1.3cm (a long grain of rice) according to the report from radiology. For months, I’ve read up on meningiomas and courses of treatment, risks, etc. and pretty much figured that’s what it was. After months and months of seizures and frustration, I have an answer and it feels FANTASTIC.
The good news is that this confirms I'm not having psychosomatic seizures related to CPTSD or trauma. Instead, the seizures and other episodes are because of this little shit causing them. I have a sense of relief and determination to face this thing like a lion.
The type of tumor (meningioma) is typically slow growing and benign with a 1% chance of being cancerous. We have a pretty extensive history of cancer in my family, so there is the worry in the back of my mind about it potentially being malignant. But I can’t stress myself out with the unknown and can only keep on moving forward until I meet with a neurologist.
With that said, next steps are seeing my PCP on June 8th and then the Neurologist on June 29th. They are both extremely booked up, so these are the soonest dates I could get unless there are cancellations. So until then, I really won't have much news to share, but I wanted to be transparent about what’s going on. I still have a commission backlog I am trying my best to finish, and I hope this doesn’t slow me down more.
If you are a client who is still waiting on a piece from me, please shoot me an email and we can discuss what to do from here. I apologize for the long wait and then this happening on top of it. You can email me at tempusobscura[at]gmail[dot]com.
Again, thank you all for your support and patience! I can’t begin to tell you all how much it really means. <3
I'll try to rest as much as I can and keep everyone up to date <3
Who knew that the piece of rice I choked on lodged itself into my brain! (jk)
I plan on keeping everyone up to date as much as I can <3
I know how scary all the tests and scanning can be, its nerve-wracking especially if you're getting an MRI. I luckily went to a location that had an Open MRI, which is far better than the one that's a tube. Definitely keep that in mind if you ever decide to move forward with more examinations. <3
Medical anything can be A Lot and just know that I support you from afar and hope you'll be able to find answers and treatment <333
I'll be sure to keep you updated too, I want to get my annual AC Seth Hug again someday ; o ;
When we finally figured out what the hell was going on, EVERYONE (my doctor included) was livid! I understand technology has its problems and always allow room for that. But its the combo of technology farting and someone(s) on my doctor's care team just shirking off on their duty that really does it.
I'm still wanting to know exactly who it was so I can tell all the birds to poop on their car. That aside, thank you so much Pyro <333 I'm glad you've stuck around even when I'm radio silent at times
Appreciate you sharing this and please take care of yourself <3
Dude, yeah, I hope its smooth sailing from here out, because if I have to get into with someone again I am going to lose it. I'm hoping that they can do a non-invasive treatment, but if surgery has to happen I will go into it knowing ya'll are all wishing me well. And that means a lot <333
but the problems you have come from leaving public health to companies and penny pinchers. here in germany they are not as negligent and disinterested yet, but since things won't improve fast we might be getting there, too.
good luck, and get well soon!
Its hard not to when a lot of my family has been taken out by different types of cancer, but I keep telling myself that I won't know anything until they do a biopsy or until I see the neurologist. Keeping my fingers crossed! <3
Sadly, you're not wrong. :T The healthcare systems in so many countries have good things and bad things, all of them could definitely use some amount of reform. Thankfully this was less about the system itself and a mix of someone(s) on my doctor's care team not sending my messages or calls to her as well as technology crapping out on itself. Its ultra frustrating, but going forward my doctor and I are staying on top of things with direct communication! <3
Thank you so much, friend! Always thankful for your support <333
That it took so long is ridiculous and I am sorry you had to endure this.
Take care of yourself please. I am sure everyone understands ;;
I'll do my best and I'll be sure to keep you all updated as things go on!
I hope so too, definitely keeping my fingers crossed!