Those last 2 words were unnecessary.
It has been a while since I've written. It's because for a while my world was very dark. I knew that if I wrote, the darkness would come out in my writing and that isn't what I wanted. I also haven't had the energy to write. These days I am fighting an hour at a time. I don't have the strength to plan for longer than that.
An update on all things Taylor. The bacteria is still growing strong. In July the sample I turned in came back positive after only a week. That means the bacteria is growing and there is a lot of it. So, I pushed for a change in the medication regimen. My whole team met with me at the same time instead of individually. It is wonderful to have them all in the same room. This way questions get answered right then instead of having to find the right person, and I actually had people to back me up when my opinion differed with the doctor. Yes, I know he is a professional, but he is just that. He is always in doctor mode and I needed him to think in actual person mode. I was grateful to have back-up and relieved when he finally relented and agreed to change what medications I am on.
I have been on all these medications before. Last year when we started this battle, I stopped these meds due to side effects. Now that we have run out of options for drugs, it is back to these meds and hopefully we will start seeing the bacteria go away.
One of the drugs is the one that caused hearing loss. To prevent this (fingers crossed) I infuse a bag of saline before the drug to give me extra hydration. That has been going on for 4 weeks now. We had to stop this week because my kidneys are not happy. Every Friday I get blood drawn to make sure my organs and blood levels are staying stable. This past Friday my kidney enzyme levels had more than doubled. So, we are backing off the drug for at least a week and I am infusing a bag of fluids every day to help my kidneys.
The other drug I started again is the one that causes severe nausea. It is constant. Even though I am on the highest anti-nausea dose 3 times a day, it still is debilitating. I could lay in bed all day if that were possible. Hurling (because who likes the word vomit) doesn't alleviate the nausea either. I would actually prefer it did. It's hard that even after your stomach is empty, you still are nauseous. I have lasted 2 weeks on this drug. 2 weeks that have seemed like years. Yesterday at my doctors appointment I brought up the fact that even though I pushed and pushed to change my meds, I don't know that I can handle this for another year. They decided to half my dose of the drug and see if that was manageable. After emptying my stomach twice this morning, the jury is out if we'll continue this drug.
Life has been a fight for the past 15 months dealing with this bacteria, but even more so the last couple weeks. I think I could have handled these drugs better a year ago. After a constant battle for 15 months, my body is worn out. It is tired of battling day in and day out. My exhaustion is at an all time high and my energy an all time low. Add in the smoke filled valley from all these crazy fires and you'll find me laying on the floor in the basement dodging Chloe as she tries to sit on my head.
I try to remember the good things I have in life, but as many of you know, when you're in the middle of hard things, the good things tend to dim. I am grateful for family and friends who have reached out and done what they can to help. It's been hard to say what people can do to help when there isn't anything physically that does help. I have wonderful people willing to come help with Chloe in the morning while I deal with exhaustion and infusions on my iv pole. I have the greatest husband who does everything in his power to make me more comfortable and distracts me from the nausea with crazy dancing and jokes.
The biggest thing I have been dealing with mentally is why.... Why is it in the plan of life for me to go through all this? Why does the pain never cease? Why does this have to be so hard?
I try not to complain since it doesn't make me feel better, but lately I've been feeling more and more that this isn't fair. A word I try not to use. Fair means so many different things and yet, it's the only word that comes to mind. It's not fair for so many people to go through difficult things, to have life cut short, families torn apart.... but it's not for me to decide what is fair. It is up to me to deal with what I've been given and try to come out conqueror.
The road still seems very long ahead. That is why I try to focus on today, right now, making it through the next hour. I'd like to say I know it'll be ok, but I don't have that confidence right now. I'll have to borrow some from TJ.
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