Thursday, September 29, 2022

Call Me

 So I had another phone call with the Gut doctor.

The Barren sat in on this one and asked questions and together as a trio of overeducated people,          we made a decision for moving forward.

My diagnosis was laid out before me, and three options (with some variances) and I made the best decision I could with the information available to me and my physician.

I have another MRI ahead of me, this is to confirm that another horrible is not lying in wait.

Meanwhile, at the same time, there are people working on getting insurance approvals for my medicine. I will be having infusions on a regular basis to stop my white blood cells from attacking my body any further and therefore reduce the inflammation of my intestines and further endanger my appendix.

If I get a problem with my appendix it would be an emergency situation because I have an inflamed intestine and surgery threatens my colitis from spreading further. You can't attach damaged sections to damaged sections....I'm like a human Jenga tower. 

I also have Crohn's disease

I am really really really struggling to process all this.

I am trying to put a happy face on, but I am finding that I am missing that overused mask.

I am stressed, scared and really have no idea what to expect. My nature is to find the silver lining of things, like....I am glad this was discovered before an emergency situation. I am hopeful I will feel better and not worse. I am thankful that my already augmented diet will be easy to maintain....

I am also trying really hard to not think of this as an hourglass...

I need to talk to someone about this, as I have not yet shared this with my bestie and brother. My therapist would be scolding me, but I guess in many ways I am not ready to say the words out loud yet. I am still too scared. I am meditating and trying to get more sleep, and get my yoga practice back in I know all these these help manage stress, but I am finding, that even they are coming up lacking.

I want to run, run far away

run back in time, run away to have away from all this adulting. I want to run away from fear and anger and the ideas of being weak or fragile or unable to be seen as a normal person.

I don't know how to do that yet. I am not able to focus on artmaking as deadline and opportunities are speeding past and I need to grab them...I need to feel pieces of me that don't feel broken or wrong or out of line.

When I was saying my thank you's to the doctor, he said " Don't pin it on your heritage or your past NSAIDs use....your immune system simply got it wrong..... We are going to try and fix that" 

I feel so much, all at the same time...


Mali said...

Oh wow, I'm so sorry you're going through all this. It's so hard to give yourself the time and space to deal with this, but to also do things that remind you that you're not "broken or wrong or out of line" when concentrating or pushing yourself is the last thing you feel you can do. Be kind to yourself, is all I can say. This sucks. But the one thing we know is that you will get through it. It's just that the "getting through it" is really really tough.

Sending hugs and love.

Infertile Phoenix said...

I will offer no unsolicited advice. I will sit with you in the unknown. However, if you have any questions about procedures, protocols, or medications, I have access to many research databases through school right now and will gladly look anything up for you. Just send me an email if you need/want to at infertilephoenix at gmail dot com.

I bet it's frustrating, but it's okay that you're not making art right now. You've got a lot of physical, emotional, and processing demands going on right now. As an artist, I hate when I'm not making art. There have been many long periods throughout the decades where I was not making anything. But not making art is part of the art making process.