Becky's Life as a Zebra
Saturday, July 20, 2024
A Serious Comedy of Errors
Thursday, March 21, 2024
A Rare Breed, Indeed
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.
Thursday, January 18, 2024
Life as it is Lived, at Least for Me
Back in December, I visited my gastroenterologist and he was optimistic about my future and felt there was no need to change any of my protocols. HA! I showed him. I didn't want to show him, it really wasn't on my radar, but it happened anyway.
Last week, I was starting to have black stools and in the wee hours of Wednesday morning, I had a bright purple mess that had lots of blood in it. I got to the sink, washed my hands, and passed out onto the bathroom floor. Kevin helped me get up and back to bed. A bit later, I asked him how alert he was and could he drive to Wenatchee--an hour away. So we got dressed, he pulled the car to the patio door so I wouldn't have to walk very far, and off we went. I got to the ER about 7:00 AM and by the stroke of providence, I was the only one in the waiting area. I was quickly taken back and it just so happened that my gastroenterologist was in the hospital, because he was the one on call.
After multiple tests, including a CT scan to see if I had a brain 😆, it was determined that I would have an endoscopy, a paracentesis, and a TIPS procedure, as well as a bypass of some blood vessels to the stomach. The endoscopy showed that the varices in my stomach had hemorrhaged, the paracentesis removed 4.5 liters of fluid, and then the repair work began. In all of this, there are no surgical incisions, just punctures for tiny instruments to feed through.
Afterwards, when I was in recovery, my nurse was a girl I had watched grow up, her sister and my daughter were very good friends. So I got to catch up on how her family was doing. I was taken from recovery to the Progressive Care Unit--a step down from ICU, but not quite the normal floor. The nursing care for the five days I was there was fantastic. During the daytime, I had an RN, an LPN, and a CNA. At night, just an RN and CNA.
The lab techs (aka vampires) came by about twice a day to draw blood for labs. One of them came at 4:00 am and took particular glee in turning on ALL of the lights in the room to draw my blood.
There are people and places that will always make an indelible mark on your soul, and some of the staff at Central Washington Hospital did that. I am so appreciative of the care we received through all of them, but some of them went above and beyond.
My hospitalist was one of a kind. She answered every question and even went so far as to call my daughter and talk to her to answer her questions, as well. The day before she discharged me, she came to tell me that she was going home for maternity leave, and she had to go on bedrest. The day I was released, she came to tell me that she was checking in as soon as she took care of her four remaining patients.
I got home Sunday and I've been doing as ordered, but I have to tell you that sleeping in my own bed is worth its weight in gold. Tomorrow is my first of many follow-ups. Stay tuned, peeps, there's more to come!
Saturday, November 4, 2023
Living My Zebra Life
So, last week, I had my regular visit with my oncologist and got the results of my CT scan. Life is still stable and that stability is so comforting to me. Soon after that visit, I had a conversation with a friend whose husband is going through his own medical issues. I remarked that when you get a life changing diagnosis, you get a whole new vocabulary lesson, and people don't always understand your particular vocabulary. The problem is that you are thrown into the lesson without much preparation and are given a short time-line for learning your particular vocabulary. There are two choices: accept the situation with grace or enter into the situation kicking and screaming about the unfairness of it all.
While speaking with my oncologist, she told me of a lady who has the exact same diagnosis as I do. She would like for me to speak with her and give her some comfort. I wrote a letter giving my doctor permission to give my contact information to this lady in the hopes that she will reach out to me. I just "celebrated" my twentieth anniversary since my diagnosis, so I have twenty years of experience with my situation. My doctor believes my twenty years of experience could be helpful, so I am waiting and praying for her to reach out to me. One thing my doctor said was that if she were in the clinic at the same time as me, she'd kind of accidentally on purpose have us run into each other. 😄
Tuesday, August 1, 2023
This Zebra Broke Out of Her Stable
Wednesday, June 7, 2023
Like Clockwork
Tuesday, I just had one appointment, but it was in the opposite direction of Monday's appointments. Because of road construction, we leave early and get to the clinic with a bit of time to spare. Again, clockwork precision for this appointment. There are a few changes coming for me but they are relatively minor. Adjustment to medication as long as I can tolerate it is about the biggest change.
EXCEPT, I am going to have to have my knee replaced in the not too far distant future. That comes with a whole load of baggage to unpack, but I'll wait until that is truly upon me. For the time being, I am getting the synthetic visco treatments in both knees. My orthopedic doctor did tell me that I do qualify for handicapped parking, so that will be in the works soon.
I kind of hate giving these "organ recitals" as update, but there are times that's what's going on with me. So there you have it. The life and times of a zebra. I am nothing if not complicated.
Friday, May 26, 2023
Actually, This Zebra Writes
A Serious Comedy of Errors
So, a couple of weeks ago, we heard that Kevin's brother fell and broke his hip. Tuesday, this past week Kevin fell and ruptured his ...
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