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 line...as 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 fun...run 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...

Wednesday, September 21, 2022

Wild Stallion

This might be a case of "the horse that has already left the barn" 

to close the stable door after the horse has bolted

to have tried to prevent something happening, but to have done so too late to prevent damage being done

It appears that my body is resisting.
I have massively altered my diet since my last ER visit back in April and June. 
To date I have lost close to 20 pounds.
I have been poked, prodded, illuminated from the inside out. Photographed, x-rayed, CT scanned, looked at via magnets. I have given blood and poop and tears; testing everything that could be imagined and all signs point to the same place.
Although I don't like the answer, it appears that everyone that has seen my stuff all agree, it is the same.
I have Colitis.
it is only a very small section of my intestines, but my gut doctor wants to put me on medicine, as the small portion of my intestine that is inflamed is very very near my appendix and if one imposes anymore on it, it could be bad bad bad.
So now I am faced with a lifetime of immunosuppressant drugs.
As you can imagine, I have a billion questions about them.
I prize my immune system, it is like my superpower, so the idea that I will need to suppress it for the rest of my life is nothing short of terrifying.

Once again, the news was delivered via a casual phone call.
When I mentioned that I wanted to continue the watch and wait method is when he mentioned that even with all my work "we are most likely dealing with a horse that has already left the stable." 
My decades of pain killers for my endo and migraines most likely played a role in my immune system attacking my intestine and so in an effort to battle one auto immune disease I created another.

What an epiphany about all this horrible.