I never run with scissors

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.

365 days down, 365 to go

Happy 1 year of treatment! You might have guessed that is typed with quite a bit of sarcasm. It is both easy and hard to believe we've hit a year of all this. A year of in home nurses, antibiotics, iv lines, and uncertainty. About 2 weeks ago I was so low. I felt like this was never going to end, this situation wasn't making me a better person, I had less compassion for others, and I was grumpy all the time.
Being a religious person, I was wrestling trying to figure out why I had to go through this. I know there are those who would say that's just life, that's what happens to some people, but me being me, I needed a reason. A reason behind why I can't be the mom I fully want to be, the wife I feel my husband deserves, the daughter my parents raised me to be was missing. I know that crappy things happen to wonderful people and I was stuck in the mindset of it's not fair, I don't deserve this. I try to be a good person, but my efforts felt wasted. I was laying in bed one night and found some much needed answers. I realized that when bad things happen, there isn't always a lesson to learn. Sometimes really crappy things happen and it's the way we handle them that matters. I honestly don't think there is a life changing lesson I am supposed to learn. I think what is supposed to come out of all this is the fact that I can get through it. I can remain a good person while facing hard situations. I can be of service to others without moving mountains. I am a good mom, wife, daughter, and friend. When a lot of things are out of my control, I can still control my attitude. I can control how I interact with others and the type of person I am. I can still show kindness. I can still be a version of myself that I once knew. The girl before the tubes, meds, treatments, and uncertainty. I can still be me.
The bacteria is still growing so we switched up my medications. We aren't sure if this combo will actually work so it's a wait and see right now. I have found slight relief for my headaches. We are going on 2 1/2 years of a headache every day so I'll take any relief so matter how small. Moving to Heber has been wonderful. The air is so clean and I love being able to go outside whenever I want. We have a park 2 blocks away from the house and Chloe has developed  a love of going down the slide. I am very prone to sunburn especially with the meds I am on so we  can't stay out too long, but it's still so wonderful to be outside. I need to find one of those big floppy hats to reduce the chance of getting sunburned. Any suggestions where to find one?
This month is Cystic Fibrosis awareness month. If you've ever had questions about CF, treatments, medications, the genetics behind it. . . feel free to reach out. You know I'm obviously not shy about talking about it and love informing others about an invisible disease you don't really know about unless someone you love has it. Knowledge is power and I firmly believe the more people who become aware of CF, the greater chance we have of one day finding a cure.

Rolling with/ Avoiding the punches

To join the throng, HAPPY NEW YEAR! It is truly amazing how fast time is flying by. Especially the fact that my little girl is 11 months old today and in a few short weeks we'll be planing her first birthday. I'm not quite ready for that to happen. She is growing so much each and every day. She loves all food, though only if she gets to feed herself. She is on the cusp of walking and climbs the stairs like a pro which equates to me chasing after her all day. Her favorite cupboard is my pyrex cupboard though I'm certain I've never actually showed her which cupboard it was. She lights up with a huge smile at the silliest things and tends to know when I need a snuggle or kiss. Although it usually  it followed up with a hair pull or her trying to rip off my nose. It's like "I love you Momma, buuuuut remember who is in charge here."
 I, like many others, was ready for 2018 to be a year to remember. To dust off the remainders of 2017 and enter 2018 ready to take charge and make it the best year ever. This was further fueled by my doctors appointment December 8th. My doctor said things were going well and if things continued this way, we could possibly stop treatment June of this year. I was over the moon. I knew I could make it another 6 months and then be done. I had a renewed determination like most of us do when things start going our way. I recently had found a chiropractor that is fairly confident he can help with my headaches. Turns out my spine is quite out of alignment and he can fix it. Everything seemed to be coming up Taylor.
  Like many things in life, when we get too over exuberant, the universe tells us to calm down. I have had my port now for 3 months. Last Tuesday when I had the needle changed, it started leaking that night. No, this is not normal. I had to de-access and wait till the next day to get more supplies. When I woke up Wednesday, I realized where the medication had spilled and touched my skin, it gave me a chemical burn. It was very painful. Imagine a really bad sunburn when it is tingly and hurts to touch. The nurse was able to put gauze over the burn so that the new dressing wouldn't touch my poor skin. Then, I woke up on Thursday. Little did I know, my life was about to be flipped upside down again. (Thanks Fresh Prince) I have been doing treatment for 8 months now. I have had 7 negative test results for the bacteria and we were heading down a lovely road. December 28th I woke up and saw on my phone I had a new test result on my health care page. I put my password in and what popped up filled my soul with dread. The bacteria I had been so diligently fighting the last 8 month came back positive on  my test result. This means the last 7 months of PICC line scars, hearing loss, tinnitus, loss of appetite, and decreased energy has meant nothing. I have to have negative results for at least 12 months. This means I can't stop my meds until at least January of 2019. I was filled with despair and questions. I have to have my test sample sent to another hospital to see if the meds are even still working, and if they're not, I honestly don't know what will happen.
  At this moment in time I was extremely grateful I have been on an antidepressant for the last month and a half. It didn't diminish the severity of the situation, but helped me to stay level and not wind up in a heap on the floor unable to continue on. I am grateful for meds that can help combat the chemical imbalance. At first I didn't want anyone to know I was taking antidepressants. I was "too strong for that" "I can handle it" and my personal favorite "I'll just get through it". After a month of breaking down every day and feeling like there was no point in fighting anymore, I called my social worker and told her what was going on. We decided to try meds and I just didn't care anymore. I was ready for whatever they wanted to do. I was questioning my faith. Wondering how terrible things can happen to good people. (Well, I try to be a good person... it could be debatable at times I guess.)
  6 weeks later, I am finding myself again. I can laugh, I can find joy, and I can feel despair without losing all sense of reason.
   Lately when talking to others, I'll ask how they are and they'll respond with whats going on and usually a trial they are dealing with. That is usually followed by, but it's nothing compared to what you're going through. Though this statement is true, I never have thought that when talking to someone. (Ok, maybe I thought it when the lady in front of my at the store was complaining because they were putting a limit on how many oranges we could buy when they were 6lbs for $1. Hence the TRYING part on being a good person) I want you to know, whoever reads this, even if it's just me reminding myself later that I can get through this, I am here. I know what it's like to feel like everything is falling apart and that you have no control. I am not one to judge or belittle your problems. We are all in this together (thank you High School Musical for ruining that sentence) and only with one another will we have any chance at making it through the crappy times to find the good. Take time to smile at the people you pass today. Reach out to someone who has been on your mind. Don't let our personal problems stop us from expressing our humanity and showing kindness to others. Happy new year. Here's to seeing you all in 2019, hopefully tubeless at some point. *clink*