In January, I had a TIPS procedure done. In February, I had two episodes of encephalopathy that took me back to the emergency room. Because of this I have had another new drug added to my regimen. Earlier this month I had an ultrasound to be sure the TIPS is working correctly. It's kinda not working like it should. I am having a revision on the 29th. The encephalopathy is a sign that ammonia is building up in my brain, and my reflexes slow down, I have to fight to find my words, I get argumentative, and I'm just generally hard to deal with. It's not pretty. For the month of February, I had a low-grade constant brain fog. It wasn't until the new medication was added that the brain fog cleared up. I feel more like me than I have in months.
My oncologist knows I get my giggles wherever I can. At my last appointment she showed me that I have been added to the clinic's Team Health designation. I am still asking where my t-shirt is. If I am on the team, I should get a shirt at the very least!
You don't realize how important feeling like yourself is until you have no control over how you feel. You begin to see how feeling like yourself is such a blessing not to be ignored.
My new learning curve includes a brand new diet--high protein, low sodium. It's hard and we have to do a lot of cooking at home. It's been hard for me to get the 100 grams of protein daily. It's a lot of work. Bless my husband's heart, he is ready to jump in and help in whatever way he can. Tonight it was cooking low sodium Chicken Tikka Masala.
We had an appointment with the Physician's Assistant for the Gastro-Enterology department of the clinic. She broke down the information into digestible pieces, including getting the protein intake. So now I have a blueprint to follow that helps me a whole lot. No more than 15-20 grams of protein at a time, then let it digest so that it isn't all just sitting in my stomach. Meals and snacks frequently throughout the day. If I do a protein powder smoothie, I need to break it up into two servings. I was using a whey powder, but I am switching to pea protein powder, the whey sits too heavily on my stomach. I'm learning it, slowly but surely.
I still fight to not let this be my identity. I still fight to be me. But, I wear my faith and hope that will shine through enough for others to see this isn't all there is to me.
