It's been a while since I've written. I often write a post in my mind when I can't sleep at night, but the words never actually make it on a page. These last few months have been an adventure to say the least. I've deleted my Facebook around 6 times. When you go in to delete it, facebook has this tricky thing that says you have 30 days from when you click delete until your account is actually gone. So, I'll click delete and inevitably a few weeks later I'll go log in. Not that I look, but it's more for the chance to later. Then (usually within a day or two) I go back in and delete one more time continuing the cycle. The reason I deleted in the first place was because seeing everyone living their lives, moving on, having great things happen was making me depressed. I felt like I was all alone over here just bumbling through. I figured the best way to stop that was to cut off the contact with the social media site. I have found that I miss the group for people with cystic fibrosis. I never talked to anyone, but it was interesting to see what others were going through and I used the search function within the group to look up all sorts of questions about sinus surgery, different bacterias, and other CF related things.
After my last post, I lasted another 2 weeks on those drugs. At my doctors appointment September 9th, I told my care team I was taking a break from meds. All ivs were to be done until the beginning of 2019. I felt that if I continued with the drugs my body was going to give out. I didn't have any more fight left in me, and I was utterly exhausted body, mind, and soul. They didn't agree but they could understand where I was coming from. When the pharmacy tech came in and my doctor announced I was taking a break he responded with, "I can see why she would want that. She is worse off now than when we started this 18 months ago." As I walked out of clinic with the plan that I would see them all in November to see how my health was doing, a few members of my care team gave me a side hug and whispered, "I would do the exact same thing." That night I got home, flushed my port, put in extra strength heparin, and pulled out the needle. It was a glorious feeling. I didn't have my leash, I could shower at the drop of a hat instead of needing 15 minutes to prep my port, and I didn't have a backpack in bed at night.
The next 3 weeks were the best weeks I have had in a long time. I was happy. I felt light. We went on walks, outings, adventures, hikes, and I could eat again. It was a side of me that some people had never seen before. All they knew was the Taylor that had been bogged down by ivs, exhaustion, nausea, and a fanny pack. It was like I had awaken out of a fog that I had been stuck in for 18 months.
On October 4th I started having shoulder pain. Really intense shoulder pain. I had an idea of what it was, but in no way was I going to voice it and take the chance of jinxing things. It finally got to the point that I could barely move my arms. I text my doctor (that's how cool I am, I have my docs personal cell number) and told him what was happening. He was just boarding a flight home from Amsterdam and the main thing he could write back was go to the ER. I notified the team. It's either your gallbladder or you have a collapsed lung. I sighed as I read his response because this is news no one wants to hear. Miraculously my brother-in-law who is a doctor just happened to be driving home from work and was 5 minutes from our house when I called him. He immediately came over and did an exam to see if I really need to go to the ER. He listened to my lungs and said if my team would ok it, he would recommend an order for a chest x-ray and avoid an ER visit that would be filled with potentially dangerous germs. They agreed and we ran to Park City to get the x-ray done. They called later that day and told me I had a large spot of infection in my lungs and plans were made to see my doctor the following Monday. They asked that TJ come to the appointment and I knew things weren't going to go in my favor. At the appointment they all walked in looking at me like I was a ghost. The social worker was crying and my doctor explained that going off treatment hadn't been the best idea. If I continued to be off of ivs, I wasn't going to live much longer.
Believe it or not, I started laughing. I was somewhat in shock and just couldn't believe the reality of it all. They explained that with the bacteria I have, there is only a 25% chance of clearing it, and that's usually for people to respond to treatment right away. (I realized my odds of clearing it was next to none since I hadn't responded to treatment at all.)
We made plans for me be to be admitted to the hospital for 2 weeks to restart treatment and get back on all my ivs. The part that broke my heart the most was being away from Chloe. I hadn't been away from her for more than 6 hours since the day she was born. My mom came up to help TJ with taking care of her. They came to the hospital a few times, but Chloe would get bored after 20 minutes and it was a lot to ask of TJ and my mom. After a week we did pft's (pulmonary function tests) to see where my lungs were. I scored a 99%. The highest I had ever done. So I was released after only 7 days. It was truly a miracle. Walking in to my home after being away for so long was a breath of fresh air. Chloe clung to me and held my face between her two little hands looking into my eyes and saying "Momma, oh momma. . . momma" and giving me lots of hugs. The nights after my return took their toll with Chloe waking up multiple times to make sure I hadn't left and would be up for hours to make sure I was there. My new fanny pack is about 4x the size of the old one and quite a bit heavier too. New medications can cause cancer and color blindness so we keep a close eyes on my blood counts and vision.
Things had hit a routine again, including the exhaustion, but at least I know it well. Last week I started having crazy back pain. I've never really had back pain before and was very confused about what was going on. We went last Saturday to urgent care where they found another spot of infection. We aren't going to add any more drugs simply because my system can't handle it. We'll wait and see, and pray it doesn't get worse. We kept our plans of having a family party for Chloe's 2nd birthday since I could either be in pain alone, or be in pain and let Chloe have some joy. It was a wonderful party with family and friends and so much love for my little girl.
21 months of treatment. Chloe opens my syringes, helps flush my port, celebrates when I get blood back ( which means my port is clear), and pushes the buttons on my CADD pump. She listens to my lungs with her real stethoscope and "helps" me with my breathing treatments.
Now for the scariest part. The past 3 months I have gotten a negative on the test for the bacteria. I need 12 to stop treatment. I am scared to hope things might be looking up. I am terrified to let myself become excited about being done. The last time I was in this situation, we had 7 negatives and then a year of positives. Hope can be a scary thing. I am taking it one day at a time and living the best I can. I slightly dread when I see I have a new test result and hold my breath until I see what test it is.
When thinking on it all, I came to the realization that this isn't a challenge to see if I can conquer the bacteria and be cured. It isn't a test to see if I can push my way through it. It is a test of character. To see who I will be in the face of struggle. To help me realize life is about a lot more than having a perfectly working body, but to work with the body you have. CF is an invisible illness. I can hide how I'm feeling quite well. I have been masking the pain for 26 years. Sometimes I let the mask fall because it can be exhausting to keep it up, but pretending things don't hurt is better then sinking into it all.
We are all champions of something. Conquerors of our own struggles and pursuits. We are all fighters against the invisible.
Saturday, February 9, 2019
Tuesday, August 14, 2018
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.
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.
Friday, May 4, 2018
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.
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.
Wednesday, January 3, 2018
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*
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*
Tuesday, September 26, 2017
The Quiet Hero
It has been a bumpy 5 months to say the least. The newest development being that I found out I have to be on IV antibiotics for another full year. I had just made a countdown chain till the day I would get my PICC line out. 6 full months from the day I got it placed. At the time I had 73 chains. Seeing it made, made me realize I could do it. I could make it to November without losing my sanity and get this tube out of my arm. The day after I finished it I had one of my monthly doctors appointment. I was talking to him about when I could get my PICC line out. It was at this sad moment I was informed it will be another full year before it would come out. As you can imagine, I was crushed. I did not know how I could physically manage having it in for another full year. Especially with Chloe. As I pondered the next few days about how I could manage a PICC line and the feelings of being worn out for another 365 days. . . I starting thinking about a PORT. A Port goes into your chest instead of your arm. There is less chance of infection and it would never have to be replaced in the course of treatment whereas I would have to get the PICC replaced 3 possibly 4 times. Fast forward a few weeks and I now have my port. It is pretty crazy to think they attached a catheter to my jugular and I have a tube coming out of my chest. It has been pretty sore since they put it in. Tomorrow will be a full week of having it.
But now for the whole reason for a post. The Quiet Hero. During all this upheaval, mess, confusion, and uncertainty, there has been a person who has been there for it all. Someone to pick me back up, build me up, and hold me when I break down. This person is TJ. I am grateful every day that I found him and that he is strong enough to handle this. I feel like at times I can't bare to keep doing this. I feel like I can't handle it and find it inspiring that he continues on: sometimes dragging me with him :) He makes so many sacrifices for his family.
Just to name a few:
He lived in a hospital for an entire week
He takes off work or leaves early to watch Chloe so I can go to doctors appointments
He gets up countless times a night with Chloe so I can get a little more sleep
He takes me to the hospital and waits during procedures
Constantly builds me up when I feel down
Is the best father to little miss and treats her like a princess
I don't know what I would do without him. Sadly he doesn't hear it enough. He is so busy doing everything he can for me, his needs get put on the back burner. When all of this is over, we are going to spend a good long while spoiling him and not thinking about me.
Oh, as for the countdown chain, I let little miss roll around and destroy it since it was slightly disappointing to keep looking at it. And a year long countdown chain is its own kind of disappointing.
But now for the whole reason for a post. The Quiet Hero. During all this upheaval, mess, confusion, and uncertainty, there has been a person who has been there for it all. Someone to pick me back up, build me up, and hold me when I break down. This person is TJ. I am grateful every day that I found him and that he is strong enough to handle this. I feel like at times I can't bare to keep doing this. I feel like I can't handle it and find it inspiring that he continues on: sometimes dragging me with him :) He makes so many sacrifices for his family.
Just to name a few:
He lived in a hospital for an entire week
He takes off work or leaves early to watch Chloe so I can go to doctors appointments
He gets up countless times a night with Chloe so I can get a little more sleep
He takes me to the hospital and waits during procedures
Constantly builds me up when I feel down
Is the best father to little miss and treats her like a princess
I don't know what I would do without him. Sadly he doesn't hear it enough. He is so busy doing everything he can for me, his needs get put on the back burner. When all of this is over, we are going to spend a good long while spoiling him and not thinking about me.
Oh, as for the countdown chain, I let little miss roll around and destroy it since it was slightly disappointing to keep looking at it. And a year long countdown chain is its own kind of disappointing.
Tuesday, August 1, 2017
When All Else Fails
These past few weeks have been interesting to say the least. I felt like I was finally getting into a groove with everything. IV changes every morning at 9:45 am, another infusion at 6 pm, daily oral medications with breakfast, another medication every evening with dinner, dressing changes with my in-home nurse every Monday afternoon, blood draws every Wednesday, medication and supply deliveries every Monday, Wednesday, and Friday plus everything that comes with being an adult, a wife, and a mother. It's a lot. Especially when you list everything involved. Then you also add in the monthly doctors appointments, quarterly headache appointments, pediatric appointments for Chloe and you'll completely understand why I have three calendars in my kitchen. Looking back now, it's amazing I haven't forgotten to do anything on my list. One of the extreme benefits of being able to be home.
It's not so much that things have gotten easier with my health, but more scheduled and my family has been able to adapt. That's the amazing thing about being human. We have the ability to take what life throws at us and either resist the inevitable- or- accept it and try to make the best of the situation. Don't get me wrong there are definitely times I resist, dig in my heels, go boneless, and do everything possible to swim upstream. I would like to hope we all have times like that. Times where we "know" best and want to do it our own way- in our own time- by our own means. Yet, that couldn't be further from the truth. What I have learned in my short 25 years is that life doesn't wait for you to accept what has happened to you before giving you more opportunities to grow. Life doesn't always wait for you to catch what's been thrown before tossing something else your way. I used to say it couldn't possibly get any worse. I found that the universe was starting to take that as a challenge. ( Kind of like how I stopped praying for more patience because I kept getting opportunities to be more patient which I would fail, then pray for more patience, and the cycle continues. . . ) Now I've started to realize all of these things life throws at you aren't going to let up. I have to catch what I can and possibly start wearing a helmet.
So... an update. The ringing is still happening and it's gotten slightly harder to hear TJ. Especially when we're talking quieter when Chloe is sleeping. I have another hearing test this month to check if the hearing loss has gotten worse. I don't know if many of you know, but for the last 19 months I have had a headache every day. I can count on one hand how many days I have been headache free. I've been working with a doctor who specializes in headaches, but so far, no breakthrough. I wake up with a headache, go to bed with a headache, and about once a week have a headache that turns into a migraine. My latest hail mary was to try out the "headache piercing" also known as the daith piercing. It comes from the acupressure point that is supposed to target headaches. The hope behind it is that if you pierce the correct point, it acts like a constant acupressure point. My headaches aren't gone, but I think at times they are improved which I'll take. I forget I have the piercings sometimes and of course when you aren't supposed to touch something it always itches, but hopefully they'll continue to improve.
I started a new medication which is going pretty well. The major side effect is that it darkens skin pigment, so even though I can't go out in the sun ( all the meds I'm on are super sun sensitive) I will look like I have a tan. So, as my pharmacist said, "Finally, a side effect that doesn't suck!" It'll take between 2-4 weeks to take affect and I've been taking it for 2 weeks now so we'll see.
For the last couple weeks my PICC line has been really sluggish and hard to flush when changing meds. I told my nurse about it and got my doctors to order a PICC flush that is pretty good at clearing stuff out of the line. It is almost 3 months to the day that it was placed. So, my nurse came and did the flush and......nothing. It didn't work. We called my doctor and the news came back that I would need to go get a new PICC line placed in my other arm. My original PICC line had officially failed. Thankfully my best friend could come up to the hospital with me and watch Chloe since TJ had left town on a business trip today. Now here we are. A brand new PICC line, a sore arm, and 3 months to go until I can switch to all oral medications. I'm doing my best, which isn't always easy, but at least I'm still pushing forward and moving.
Life isn't about finding the easy road or the scenic route. Life is about fighting a battle and coming out on the other side a different person, a better person than the one who started fighting in the first place. And, when all else fails, get a new PICC line. Find a new way, a different route, a better solution, but NEVER STOP TRYING. When you stop trying is when you stop growing and when you stop growing, you get stuck in a rut and a poor me situation where there isn't any hope. If you find yourself in that spot, give me a call or send me a message. I know what it's like to feel helpless, and you don't always need someone to fix things. Sometimes all it takes is a listening ear and an open heart to let you know you aren't alone. Someone cares. Even if all I can say is, "That sucks, I'm sorry you have to endure that." Know I am here. I am willing to listen. I understand you sometimes feel like it's too much for one person to handle. And yes, you may be just one person, but you're never alone. I am here.
It's not so much that things have gotten easier with my health, but more scheduled and my family has been able to adapt. That's the amazing thing about being human. We have the ability to take what life throws at us and either resist the inevitable- or- accept it and try to make the best of the situation. Don't get me wrong there are definitely times I resist, dig in my heels, go boneless, and do everything possible to swim upstream. I would like to hope we all have times like that. Times where we "know" best and want to do it our own way- in our own time- by our own means. Yet, that couldn't be further from the truth. What I have learned in my short 25 years is that life doesn't wait for you to accept what has happened to you before giving you more opportunities to grow. Life doesn't always wait for you to catch what's been thrown before tossing something else your way. I used to say it couldn't possibly get any worse. I found that the universe was starting to take that as a challenge. ( Kind of like how I stopped praying for more patience because I kept getting opportunities to be more patient which I would fail, then pray for more patience, and the cycle continues. . . ) Now I've started to realize all of these things life throws at you aren't going to let up. I have to catch what I can and possibly start wearing a helmet.
So... an update. The ringing is still happening and it's gotten slightly harder to hear TJ. Especially when we're talking quieter when Chloe is sleeping. I have another hearing test this month to check if the hearing loss has gotten worse. I don't know if many of you know, but for the last 19 months I have had a headache every day. I can count on one hand how many days I have been headache free. I've been working with a doctor who specializes in headaches, but so far, no breakthrough. I wake up with a headache, go to bed with a headache, and about once a week have a headache that turns into a migraine. My latest hail mary was to try out the "headache piercing" also known as the daith piercing. It comes from the acupressure point that is supposed to target headaches. The hope behind it is that if you pierce the correct point, it acts like a constant acupressure point. My headaches aren't gone, but I think at times they are improved which I'll take. I forget I have the piercings sometimes and of course when you aren't supposed to touch something it always itches, but hopefully they'll continue to improve.
I started a new medication which is going pretty well. The major side effect is that it darkens skin pigment, so even though I can't go out in the sun ( all the meds I'm on are super sun sensitive) I will look like I have a tan. So, as my pharmacist said, "Finally, a side effect that doesn't suck!" It'll take between 2-4 weeks to take affect and I've been taking it for 2 weeks now so we'll see.
For the last couple weeks my PICC line has been really sluggish and hard to flush when changing meds. I told my nurse about it and got my doctors to order a PICC flush that is pretty good at clearing stuff out of the line. It is almost 3 months to the day that it was placed. So, my nurse came and did the flush and......nothing. It didn't work. We called my doctor and the news came back that I would need to go get a new PICC line placed in my other arm. My original PICC line had officially failed. Thankfully my best friend could come up to the hospital with me and watch Chloe since TJ had left town on a business trip today. Now here we are. A brand new PICC line, a sore arm, and 3 months to go until I can switch to all oral medications. I'm doing my best, which isn't always easy, but at least I'm still pushing forward and moving.
Life isn't about finding the easy road or the scenic route. Life is about fighting a battle and coming out on the other side a different person, a better person than the one who started fighting in the first place. And, when all else fails, get a new PICC line. Find a new way, a different route, a better solution, but NEVER STOP TRYING. When you stop trying is when you stop growing and when you stop growing, you get stuck in a rut and a poor me situation where there isn't any hope. If you find yourself in that spot, give me a call or send me a message. I know what it's like to feel helpless, and you don't always need someone to fix things. Sometimes all it takes is a listening ear and an open heart to let you know you aren't alone. Someone cares. Even if all I can say is, "That sucks, I'm sorry you have to endure that." Know I am here. I am willing to listen. I understand you sometimes feel like it's too much for one person to handle. And yes, you may be just one person, but you're never alone. I am here.
Monday, July 3, 2017
Can you repeat that?
Time is a funny thing. In the moment it can seem never ending. When you can hear your heart beating and everything slows. Then there are times it flies by in a flash leaving you wondering how long you blinked and wishing it would rewind. The past two months have had both instances happen many times.
Most of the flying times are in association with how fast my little girl is growing. She is 5 months old today. 5 months! I can still close my eyes and see our hospital room, the beeping of the machines, the creaking of the bed, and listening to her breathe. I am so incredibly grateful for her. She is incredibly strong. She is already rolling like a madman doing doughnuts in her crib, standing with help, and taking steps (but only if she is in the mood). I am excited and terrified for the day she starts crawling. Excited because her brain is developing and growing, terrified because she is growing so fast. Oh plus the whole mobile thing and I'll have to find a new place for my meds since on the floor isn't going to cut it anymore.
Now to the moments where time seems to stop. Over the past two months I have had to have 3 hearing tests. One was to get a baseline of where I was before starting meds. Not to brag, but the audiologist said I had spectacular hearing. My high frequency hearing was higher than most peoples. About 2 weeks after we got home from the hospital I started getting a ringing in my ears. I notified my pharmacist (who is basically my best friend since we speak 2 times a week if not more). He said to keep track of it and to let him know if it got worse. When we spoke next I let him know it was still there. We decided to have another hearing test and possibly stop the medication that was known to affect hearing. So, I went to get another hearing test. To give a slight description of the hearing tests, you sit in a sound proof room that is about a 6'x6' room. It is so quiet that everything seems amplified. Your heartbeat is so loud and in my case the ringing was deafening. They put a huge pair of headphones on you and you listen for the beeps, the hum, and repeat words back to the person administering the test. After it was over, the news came back that my high frequency hearing was severely lower than my baseline. It became apparent that the medication had to be stopped. Fast forward another week. They had said the ringing would go away once the medication was out of my system. Yet, in my case the ringing only got louder accompanied by a humming. It became harder to hear TJ at night if any other sound was going on such as water running. I went back for another hearing test. As you sit in the room, these are the moments time stands still. Waiting for the beep, knowing you should be able to hear it, but you can't. I knew my hearing has gotten worse. When the audiologist came in to discuss results, I was sadly correct. My audible hearing had gone down. Not a lot, but enough to effect my ability to hear quiet noises. I've been told to prepare for it to be permanent. This way I don't get my hopes us for something that may never come back. I asked what I could do about the ringing and humming at night. When it is quiet these noises are maddeningly loud. Their only suggestion is a noise machine to distract me from the noise. It's discouraging, but I'm still fighting.
Now what? Well, I was put on a new medicine since they took one away. With this bacteria, a cocktail of drugs is much more powerful than one or two meds on their own. The new medicine they were hesitant to put me on. The main side effect is nausea. I have to take an anti-nausea medicine before I start infusing. During the infusion the nausea isn't too bad. I'm just counting my blessings it hasn't made me throw-up yet. The downside is that the next day I am nauseous all morning. It finally goes away around 3pm. Then I infuse again at 6pm.... Makes it difficult to have an appetite. This is tough because I need to keep up my food intake more than ever because my body is working so hard to fight this bacteria and it needs to fuel. In case you didn't know, people with CF have to have a caloric intake of around 4,000 calories a day because we don't absorb nutrients like others. We have to overcompensate to help our bodies function properly, well as properly as they can.
Oh, funny part about my new antibiotic... it looks like I am infusing lemon lime gatorade (or another liquid that is that same color that shall remain nameless). I promise the catheter is in my arm!
Most of the flying times are in association with how fast my little girl is growing. She is 5 months old today. 5 months! I can still close my eyes and see our hospital room, the beeping of the machines, the creaking of the bed, and listening to her breathe. I am so incredibly grateful for her. She is incredibly strong. She is already rolling like a madman doing doughnuts in her crib, standing with help, and taking steps (but only if she is in the mood). I am excited and terrified for the day she starts crawling. Excited because her brain is developing and growing, terrified because she is growing so fast. Oh plus the whole mobile thing and I'll have to find a new place for my meds since on the floor isn't going to cut it anymore.
Now to the moments where time seems to stop. Over the past two months I have had to have 3 hearing tests. One was to get a baseline of where I was before starting meds. Not to brag, but the audiologist said I had spectacular hearing. My high frequency hearing was higher than most peoples. About 2 weeks after we got home from the hospital I started getting a ringing in my ears. I notified my pharmacist (who is basically my best friend since we speak 2 times a week if not more). He said to keep track of it and to let him know if it got worse. When we spoke next I let him know it was still there. We decided to have another hearing test and possibly stop the medication that was known to affect hearing. So, I went to get another hearing test. To give a slight description of the hearing tests, you sit in a sound proof room that is about a 6'x6' room. It is so quiet that everything seems amplified. Your heartbeat is so loud and in my case the ringing was deafening. They put a huge pair of headphones on you and you listen for the beeps, the hum, and repeat words back to the person administering the test. After it was over, the news came back that my high frequency hearing was severely lower than my baseline. It became apparent that the medication had to be stopped. Fast forward another week. They had said the ringing would go away once the medication was out of my system. Yet, in my case the ringing only got louder accompanied by a humming. It became harder to hear TJ at night if any other sound was going on such as water running. I went back for another hearing test. As you sit in the room, these are the moments time stands still. Waiting for the beep, knowing you should be able to hear it, but you can't. I knew my hearing has gotten worse. When the audiologist came in to discuss results, I was sadly correct. My audible hearing had gone down. Not a lot, but enough to effect my ability to hear quiet noises. I've been told to prepare for it to be permanent. This way I don't get my hopes us for something that may never come back. I asked what I could do about the ringing and humming at night. When it is quiet these noises are maddeningly loud. Their only suggestion is a noise machine to distract me from the noise. It's discouraging, but I'm still fighting.
Now what? Well, I was put on a new medicine since they took one away. With this bacteria, a cocktail of drugs is much more powerful than one or two meds on their own. The new medicine they were hesitant to put me on. The main side effect is nausea. I have to take an anti-nausea medicine before I start infusing. During the infusion the nausea isn't too bad. I'm just counting my blessings it hasn't made me throw-up yet. The downside is that the next day I am nauseous all morning. It finally goes away around 3pm. Then I infuse again at 6pm.... Makes it difficult to have an appetite. This is tough because I need to keep up my food intake more than ever because my body is working so hard to fight this bacteria and it needs to fuel. In case you didn't know, people with CF have to have a caloric intake of around 4,000 calories a day because we don't absorb nutrients like others. We have to overcompensate to help our bodies function properly, well as properly as they can.
Oh, funny part about my new antibiotic... it looks like I am infusing lemon lime gatorade (or another liquid that is that same color that shall remain nameless). I promise the catheter is in my arm!
Sunday, May 21, 2017
Home Sweet Home
Thank you from the bottom of my heart for the outpouring of love after my last post. Nothing about this new journey has been easy, but I know without a doubt that your prayers have strengthened me and helped me get through each day.
So, an update. I've actually been home a week. I was released from the hospital last Friday afternoon with some mementos to take with me. A cool fashionable fanny pack and an awesome bruise from the blood clot I developed above my PICC line insertion. My PICC line will be with me for about 6 months. I get to switch out my own iv meds which has been pretty interesting. The meds come prepacked and ready to go. It's full proof and there is no possible way to mess it up which is pretty relieving. I have one antibiotic I am on for 23 hours a day and another I am on for an hour a day. Although we have hit a milestone because the hour a day one is now only Monday, Wednesday, and Friday. I can have an hour a day 4 days a week not attached to my leash. Can I get a Hallelujah?
I had imagined coming home from the hospital would be a joyous occasion, and while it was so nice to be in my house, not confined to small room, reality set in and hit me pretty hard. I realized this is my foreseeable future. You expect to be hooked up to tubes when in the hospital, but now that I'm home and the tubes are still there, I've taken it pretty hard. There has been more than one incident of moving too fast or not being aware of what I'm doing and ended up tugging on my iv line. Good thing the dressing covering it is strong. Sorry if I made anyone wince, a shiver runs up my spine just remembering it. Chloe and an iv line don't really mix either. She is in the happy stage of learning to grab things, my iv tubing being one of them. When she grabs it too high, it can be difficult to pry it out of her adorable steel trap grip with one hand. I cringe thinking of the day she learns to crawl and catches me unaware and latches on to the iv, but I'll save that challenge for another day.
I am continuously amazed at her resilience and strength. She took to a bottle and formula like a champ. I took stopping nursing harder than she did. I still miss it a lot and she has many times given me her "you're being ridiculous" face as I try to hold back tears while feeding her a bottle. Though the upside is that formula keeps her full a lot longer than breastmilk and I enjoy getting 6 hours of continuous sleep a night. I am glad she won't have memories of this time. Babies don't care too much about having pajama days or staying in bed most of the day. Just give her attention, food, a clean diaper, and she is good to go. I absolutely love being a mom. She is my rock, my reason to get out of bed and keep moving forward. She is also a huge part of my motivation to continue the fight against CF. Her and TJ are my strength when I am weak. They keep me moving forward hour after hour. Without them, the depression that grips so many with a chronic illness would be a lot more abundant than it is now.
So, how am I? I'm alright. The main side effect from the many antibiotics I am on is flu like symptoms. With that in mind, I feel achy pretty much all the time which makes daily life a struggle at times. I am trying to be positive, but that isn't the easiest thing. Don't let me lead you to believe that I don't see the abundance and greatness around me. My family and friends are incredible. They step in at the exact moment I don't think I can take another step. They have brought food and good company. I am surrounded by people who make me feel like their only job is to help lift me up. I don't know what I would do without them.
It's pretty much impossible to describe my appreciation for all that people have done. From the dinners, conversations, treats, good thoughts, and prayers, I am surrounded by love. I pray for you all daily with the struggles you face. I have to remember I am not the only one having a hard time, which helps me get out of my own head. As each day passes, I am another day closer to getting this PICC line out, getting rid of this bacteria, and one day closer to a cure for CF. Countdown chain anyone? I've got construction paper!
So, an update. I've actually been home a week. I was released from the hospital last Friday afternoon with some mementos to take with me. A cool fashionable fanny pack and an awesome bruise from the blood clot I developed above my PICC line insertion. My PICC line will be with me for about 6 months. I get to switch out my own iv meds which has been pretty interesting. The meds come prepacked and ready to go. It's full proof and there is no possible way to mess it up which is pretty relieving. I have one antibiotic I am on for 23 hours a day and another I am on for an hour a day. Although we have hit a milestone because the hour a day one is now only Monday, Wednesday, and Friday. I can have an hour a day 4 days a week not attached to my leash. Can I get a Hallelujah?
I had imagined coming home from the hospital would be a joyous occasion, and while it was so nice to be in my house, not confined to small room, reality set in and hit me pretty hard. I realized this is my foreseeable future. You expect to be hooked up to tubes when in the hospital, but now that I'm home and the tubes are still there, I've taken it pretty hard. There has been more than one incident of moving too fast or not being aware of what I'm doing and ended up tugging on my iv line. Good thing the dressing covering it is strong. Sorry if I made anyone wince, a shiver runs up my spine just remembering it. Chloe and an iv line don't really mix either. She is in the happy stage of learning to grab things, my iv tubing being one of them. When she grabs it too high, it can be difficult to pry it out of her adorable steel trap grip with one hand. I cringe thinking of the day she learns to crawl and catches me unaware and latches on to the iv, but I'll save that challenge for another day.
I am continuously amazed at her resilience and strength. She took to a bottle and formula like a champ. I took stopping nursing harder than she did. I still miss it a lot and she has many times given me her "you're being ridiculous" face as I try to hold back tears while feeding her a bottle. Though the upside is that formula keeps her full a lot longer than breastmilk and I enjoy getting 6 hours of continuous sleep a night. I am glad she won't have memories of this time. Babies don't care too much about having pajama days or staying in bed most of the day. Just give her attention, food, a clean diaper, and she is good to go. I absolutely love being a mom. She is my rock, my reason to get out of bed and keep moving forward. She is also a huge part of my motivation to continue the fight against CF. Her and TJ are my strength when I am weak. They keep me moving forward hour after hour. Without them, the depression that grips so many with a chronic illness would be a lot more abundant than it is now.
So, how am I? I'm alright. The main side effect from the many antibiotics I am on is flu like symptoms. With that in mind, I feel achy pretty much all the time which makes daily life a struggle at times. I am trying to be positive, but that isn't the easiest thing. Don't let me lead you to believe that I don't see the abundance and greatness around me. My family and friends are incredible. They step in at the exact moment I don't think I can take another step. They have brought food and good company. I am surrounded by people who make me feel like their only job is to help lift me up. I don't know what I would do without them.
It's pretty much impossible to describe my appreciation for all that people have done. From the dinners, conversations, treats, good thoughts, and prayers, I am surrounded by love. I pray for you all daily with the struggles you face. I have to remember I am not the only one having a hard time, which helps me get out of my own head. As each day passes, I am another day closer to getting this PICC line out, getting rid of this bacteria, and one day closer to a cure for CF. Countdown chain anyone? I've got construction paper!
Sunday, May 7, 2017
My New Constant Companion
As I begin writing this it is currently 4:30 am. Why aren't I sleeping you may ask? Well I find it hard to sleep in a hospital. Don't let me jump the gun though. Let's start at the beginning.
I have doctors appointments every 3 months for cystic fibrosis. These appointments last about 3-4 hours because I meet with an entire team of people whose only goal is to keep me alive and healthy. The end of March was my most current one. I was on a baby high and had a new mother glow. Things went smoothly. My pulmonary function tests (think lung measurement test) were up which is great, I was feeling pretty good considering I was 2 months postpartum, and I left feeling hopeful. 2 weeks after that life turned upside down. (Think Fresh Prince theme song but without the fight)
I got news that a new strain of bacteria had popped up on my test results. I always have 2 different types of bacteria in my lungs, but this 3rd one was very serious and very scary. More tests were needed to confirm what we were hoping was a fluke. Fast forward 3ish weeks. The test results sadly came back not in our favor. This certain bacteria is common in the world around us and people with a functioning immune system easily pass it through their system, but with my severely compromised immune system, it decided to move in and sign a 2 year lease.
I started having symptoms that this bacteria had set up camp and was making itself quite comfortable. The ball started rolling to get me an appointment with the doctor as soon as possible. Then the next hairpin turn came up. I woke up Thursday morning coughing A LOT. I realized there was a metallic taste in my mouth when I coughed. I realized that I was coughing up blood mixed with my sputum. As you can imagine I was terrified. This had never happened to me before. I called the doctor immediately and like a good wife (state farm is there) (oh the joys of a 4am brain) text my husband to call me, because news like this should not be read over a little screen. Of course doctors were concerned and plans were made to see them the next day.
Let's pause at this moment in time. I was terrified out of my mind. I no longer had just myself to think about. I have an incredible husband and an amazing baby girl to take care of. What was going to happen to us? As the cascade of questions began forming, none of which I could answer, the self doubt and guilt began also. Second guessing choices I'd made and things that were completely out of my control I blamed myself for. When life gets tough, I tend to retreat inside my shell to wait out the storm, a storm I soon found out would last about 18-24 months.
So after a long but informative appointment, here we are. My little family camped out in a hospital room that is 10 steps from window to door. I have a PIC line (a fancy iv inserted between my elbow and shoulder) that will remain there for 3-6 months. I'm on continuous iv antibiotics and oral antibiotics to hopefully hit the ground running on treating my unwelcome friend. After correct dosage is figured out, I can then continue treatment at home with an in home nurse coming weekly.
Am I still scared? Yes
Do I know what the next 2 years will be like? I've prepared for most likely the hardest 2 years of my life as treatment is very taxing on all aspects of life.
Am I frustrated? Absolutely
Is my faith growing? Honestly, not yet.
Am I blessed? Beyond measure.
Something like this brings out the best and worst in people. (I say worst meaning myself.) The amount of love and support that has poured in is incredible. Being scared makes me a little harsh and too quick to misinterpret things that are said, but even then, people tend not to give up on you. Love is funny that way. I am not feeling strong, but know somewhere deep down I am. I'm not feeling upbeat, but soon I will.
As you're reading this you may be thinking "oh no I need to help her" (crazy I can read minds now) and the most helpful thing is good thoughts and prayers directed this way. With how large my family has become I can only imagine how many prayers have been said on my behalf, but I know they have helped because I'm still moving forward, one foot in front of the other.
The enlightening part about breaking down-once you've broken down, you can start to rebuild. Love you all. I wouldn't have made it this far without you.
I have doctors appointments every 3 months for cystic fibrosis. These appointments last about 3-4 hours because I meet with an entire team of people whose only goal is to keep me alive and healthy. The end of March was my most current one. I was on a baby high and had a new mother glow. Things went smoothly. My pulmonary function tests (think lung measurement test) were up which is great, I was feeling pretty good considering I was 2 months postpartum, and I left feeling hopeful. 2 weeks after that life turned upside down. (Think Fresh Prince theme song but without the fight)
I got news that a new strain of bacteria had popped up on my test results. I always have 2 different types of bacteria in my lungs, but this 3rd one was very serious and very scary. More tests were needed to confirm what we were hoping was a fluke. Fast forward 3ish weeks. The test results sadly came back not in our favor. This certain bacteria is common in the world around us and people with a functioning immune system easily pass it through their system, but with my severely compromised immune system, it decided to move in and sign a 2 year lease.
I started having symptoms that this bacteria had set up camp and was making itself quite comfortable. The ball started rolling to get me an appointment with the doctor as soon as possible. Then the next hairpin turn came up. I woke up Thursday morning coughing A LOT. I realized there was a metallic taste in my mouth when I coughed. I realized that I was coughing up blood mixed with my sputum. As you can imagine I was terrified. This had never happened to me before. I called the doctor immediately and like a good wife (state farm is there) (oh the joys of a 4am brain) text my husband to call me, because news like this should not be read over a little screen. Of course doctors were concerned and plans were made to see them the next day.
Let's pause at this moment in time. I was terrified out of my mind. I no longer had just myself to think about. I have an incredible husband and an amazing baby girl to take care of. What was going to happen to us? As the cascade of questions began forming, none of which I could answer, the self doubt and guilt began also. Second guessing choices I'd made and things that were completely out of my control I blamed myself for. When life gets tough, I tend to retreat inside my shell to wait out the storm, a storm I soon found out would last about 18-24 months.
So after a long but informative appointment, here we are. My little family camped out in a hospital room that is 10 steps from window to door. I have a PIC line (a fancy iv inserted between my elbow and shoulder) that will remain there for 3-6 months. I'm on continuous iv antibiotics and oral antibiotics to hopefully hit the ground running on treating my unwelcome friend. After correct dosage is figured out, I can then continue treatment at home with an in home nurse coming weekly.
Am I still scared? Yes
Do I know what the next 2 years will be like? I've prepared for most likely the hardest 2 years of my life as treatment is very taxing on all aspects of life.
Am I frustrated? Absolutely
Is my faith growing? Honestly, not yet.
Am I blessed? Beyond measure.
Something like this brings out the best and worst in people. (I say worst meaning myself.) The amount of love and support that has poured in is incredible. Being scared makes me a little harsh and too quick to misinterpret things that are said, but even then, people tend not to give up on you. Love is funny that way. I am not feeling strong, but know somewhere deep down I am. I'm not feeling upbeat, but soon I will.
As you're reading this you may be thinking "oh no I need to help her" (crazy I can read minds now) and the most helpful thing is good thoughts and prayers directed this way. With how large my family has become I can only imagine how many prayers have been said on my behalf, but I know they have helped because I'm still moving forward, one foot in front of the other.
The enlightening part about breaking down-once you've broken down, you can start to rebuild. Love you all. I wouldn't have made it this far without you.
Thursday, November 10, 2016
Tales of a Pregnant Woman
My entire life, I have dreamed of being a mom. Teaching got me close to that. Being able to mold tiny humans and help them see their true potential. To teach them to believe in themselves and reach for the stars. When their little arms would wrap around my waist and they would say "I love you Miss Gough" it was one of the best feelings. When I got married, this dream became a whole lot closer to reality. People would ask if I was baby hungry, I don't know if there has been a time I haven't been baby hungry. I started babysitting at the ripe young age of 11 and BAM. . . the waiting game started to one day have a family of my own.
When TJ and I got married, we talked about when we would start a family. We agreed to wait about a year and we both felt good about that. Then the days started to pass. Since I was now retired from teaching, my days are spent taking care of the house, grocery shopping, laundry, and experimenting with recipes. It was all grand, but I felt something was missing. I held out until April and then approached the topic of maybe starting a family sooner than a year. We weren't sure how Cystic Fibrosis would impact this, but decided to have faith. My saint of a husband took some time to ponder this idea and to my ecstatic surprise, he agreed. Now anyone who knows me knows I have the patience of a bomb. I wanted it to happen immediately. I met with my doctors who supported us completely and talked about how pregnancy would impact my medications. Thankfully only one would have to be changed. The nature of CF is that as life goes on, your lung function tends to decline, so, with my lung function being in the 90%ish- this was a good time to start a family.
Me being me, I started to research pregnancy and CF. The results I found did not calm my anxious mind. CF does present some challenges. Because there is mucus basically in every part of my body, becoming pregnant can sometimes take 6 months to 1 year and then times leading to medical intervention. I felt so discouraged. I felt like my life's goal was to be a great mom to a gaggle of children, but now I wasn't so sure. I started realizing that the women I knew with CF and a family usually never had more than 2 children. I took my troubles to TJ who has this incredible way of saying exactly what I need to hear. He said, "It'll happen when it's supposed to. If we have to adopt, we adopt. If we can only have 1, then we have 1. If we can have more, we'll approach it when we get there. We will do whatever is best for your health. And if we never have kids and it's just the two of us, I will still be the happiest guy on Earth." I know, I got so lucky finding him. Of course the days of discouragement still popped up. The what ifs and doubts were there, but I tried to push them aside.
Then came one of the best days of my life. June 9th, I was only one day late, but I was so hopeful. I waited until TJ went to work to take the test because if I was negative I wanted to deal with my disappointment all alone. To my elation, there were 2 little pink lines. I was so extremely happy, but then realized I couldn't tell anyone until TJ got home, 9 hours later!! The universe thought it would be funny to send my father-in-law and my mom over to my house during different times of the day and it took all my self control to keep the news to myself. Telling TJ is a memory I'll always remember. He was so excited!
So here we are, 25 weeks later. I am considered high-risk because since it's such a challenge to gain weight, the baby doesn't always gain the weight they're supposed to. I am also at a higher risk for gestational diabetes since with CF I am already at risk for diabetes. So far baby girl is on track with weight and development. I'll be having ultrasounds to check for growth every few weeks. Since I am so small framed, I started showing quite quickly and when baby girl kicks, she moves my entire stomach. She does not like being poked, but loves skittles. Through the challenges that have come with pregnancy and CF, this little one has helped take my mind off the aches and pains. The strength to endure increases when it's no longer just you you're supporting. I am grateful everyday for the miracle she is and hope to be the type of mom I've dreamed of being.
When TJ and I got married, we talked about when we would start a family. We agreed to wait about a year and we both felt good about that. Then the days started to pass. Since I was now retired from teaching, my days are spent taking care of the house, grocery shopping, laundry, and experimenting with recipes. It was all grand, but I felt something was missing. I held out until April and then approached the topic of maybe starting a family sooner than a year. We weren't sure how Cystic Fibrosis would impact this, but decided to have faith. My saint of a husband took some time to ponder this idea and to my ecstatic surprise, he agreed. Now anyone who knows me knows I have the patience of a bomb. I wanted it to happen immediately. I met with my doctors who supported us completely and talked about how pregnancy would impact my medications. Thankfully only one would have to be changed. The nature of CF is that as life goes on, your lung function tends to decline, so, with my lung function being in the 90%ish- this was a good time to start a family.
Me being me, I started to research pregnancy and CF. The results I found did not calm my anxious mind. CF does present some challenges. Because there is mucus basically in every part of my body, becoming pregnant can sometimes take 6 months to 1 year and then times leading to medical intervention. I felt so discouraged. I felt like my life's goal was to be a great mom to a gaggle of children, but now I wasn't so sure. I started realizing that the women I knew with CF and a family usually never had more than 2 children. I took my troubles to TJ who has this incredible way of saying exactly what I need to hear. He said, "It'll happen when it's supposed to. If we have to adopt, we adopt. If we can only have 1, then we have 1. If we can have more, we'll approach it when we get there. We will do whatever is best for your health. And if we never have kids and it's just the two of us, I will still be the happiest guy on Earth." I know, I got so lucky finding him. Of course the days of discouragement still popped up. The what ifs and doubts were there, but I tried to push them aside.
Then came one of the best days of my life. June 9th, I was only one day late, but I was so hopeful. I waited until TJ went to work to take the test because if I was negative I wanted to deal with my disappointment all alone. To my elation, there were 2 little pink lines. I was so extremely happy, but then realized I couldn't tell anyone until TJ got home, 9 hours later!! The universe thought it would be funny to send my father-in-law and my mom over to my house during different times of the day and it took all my self control to keep the news to myself. Telling TJ is a memory I'll always remember. He was so excited!
So here we are, 25 weeks later. I am considered high-risk because since it's such a challenge to gain weight, the baby doesn't always gain the weight they're supposed to. I am also at a higher risk for gestational diabetes since with CF I am already at risk for diabetes. So far baby girl is on track with weight and development. I'll be having ultrasounds to check for growth every few weeks. Since I am so small framed, I started showing quite quickly and when baby girl kicks, she moves my entire stomach. She does not like being poked, but loves skittles. Through the challenges that have come with pregnancy and CF, this little one has helped take my mind off the aches and pains. The strength to endure increases when it's no longer just you you're supporting. I am grateful everyday for the miracle she is and hope to be the type of mom I've dreamed of being.
Friday, April 22, 2016
The Truth About Quicksand
When we were little, quicksand was made out to be a huge obstacle that we would encounter at one point or another in our lives. Even cartoons depicted the scene of the main character struggling against the quicksand sinking lower and lower all while they were frantically scrambling to grab any branch or vine they could reach. We would play games about quicksand as we would giggle and pretend we were slowing sinking only to have a friend grab our arm and haul us to safety.
As life continues on, I've discovered that I didn't need to worry about encountering quicksand on a daily basis, in fact between Nevada and Utah, I found that as long as I stayed on the designated paths while hiking, I wouldn't really have to worry about quicksand at all.
Except then I discovered the metaphorical quicksand of life. Those times in life when situations happen and you fight with everything you've got to get out, yet find yourself sinking lower and lower with no branch or vine in sight. All of us have times when we don't feel there is a way out, feel that we're sinking.
A chronic illness can sometimes feel like quicksand. You'll pull yourself out a little bit and feel healthy, only to be sucked back in even further. Medications, therapies, and other resources are small vines that can lift you out, but there are times where you continue to struggle and the light at the end of the tunnel becomes a little less bright. Now don't get me wrong, I am not here to have a pity party or complain. I have had to learn a lot of life lessons in the past year. I've learned that endurance is a lot harder than it seems, prayers for healing don't always get answered, and faith grows where your strength lacks.
But, the real truth about quicksand is that when you stop fighting, stop struggling, you stop sinking. Quicksand only sucks you in as you struggle. The most quicksand can pull you in is about to your waist if you are still.
Sadly, unlike quicksand, a chronic illness can never be fully escaped. But, like quicksand, I can lessen the amount of fighting to stay afloat. I have found that the times when I'm praying the hardest, I haven't been healed, but have had a greater ability to get through the tough times. When my strength is gone, my faith grows. I have discovered that the ability to endure doesn't come years, months, or weeks at a time, but in the days, hours and minutes of each day.
So, the reason for this post. . . times are tough, life is hard, but with amazing people by your side (like my incredible husband and family) you can endure the coming minutes, hours, and days. Looking too far into the future can seem daunting, but enjoying the moments now make the days sweeter.
I've had to establish a new motto in life. When the going gets tough, the tough sometimes need to sit down and breathe.
As life continues on, I've discovered that I didn't need to worry about encountering quicksand on a daily basis, in fact between Nevada and Utah, I found that as long as I stayed on the designated paths while hiking, I wouldn't really have to worry about quicksand at all.
Except then I discovered the metaphorical quicksand of life. Those times in life when situations happen and you fight with everything you've got to get out, yet find yourself sinking lower and lower with no branch or vine in sight. All of us have times when we don't feel there is a way out, feel that we're sinking.
A chronic illness can sometimes feel like quicksand. You'll pull yourself out a little bit and feel healthy, only to be sucked back in even further. Medications, therapies, and other resources are small vines that can lift you out, but there are times where you continue to struggle and the light at the end of the tunnel becomes a little less bright. Now don't get me wrong, I am not here to have a pity party or complain. I have had to learn a lot of life lessons in the past year. I've learned that endurance is a lot harder than it seems, prayers for healing don't always get answered, and faith grows where your strength lacks.
But, the real truth about quicksand is that when you stop fighting, stop struggling, you stop sinking. Quicksand only sucks you in as you struggle. The most quicksand can pull you in is about to your waist if you are still.
Sadly, unlike quicksand, a chronic illness can never be fully escaped. But, like quicksand, I can lessen the amount of fighting to stay afloat. I have found that the times when I'm praying the hardest, I haven't been healed, but have had a greater ability to get through the tough times. When my strength is gone, my faith grows. I have discovered that the ability to endure doesn't come years, months, or weeks at a time, but in the days, hours and minutes of each day.
So, the reason for this post. . . times are tough, life is hard, but with amazing people by your side (like my incredible husband and family) you can endure the coming minutes, hours, and days. Looking too far into the future can seem daunting, but enjoying the moments now make the days sweeter.
I've had to establish a new motto in life. When the going gets tough, the tough sometimes need to sit down and breathe.
Tuesday, February 2, 2016
The War on Each Other
When did we become a society of conformity? When did it become a bad thing to differ in opinion or to decide to do things differently? When did we decide to no longer have respect for humans?
Lately, the world has turned into a place that will shame you for being different. We claim that everyone has the right to their own voice, but only if that voice aligns with your own. We shout for freedom of speech, but shun anyone who speaks too loudly about topics you don't agree with. We no longer turn a blind eye, but yell and curse and scream until we have proved we are right. And most often, our screaming is done by the few clicks of a keyboard. We feel we can hide behind a bright screen, yet say we are standing for our beliefs. We condemn those who ripple the pond in ways we don't want it to.
My mother taught me something when I was very little. She said, "Taylor, if you don't have anything nice to say, don't say anything at all." My mother taught all her daughters to be proud, independent, strong women who knew what we wanted out of life and weren't afraid to fight for it, yet never once did she say scream and yell at others to get there. She never told us to hate others who were different or thought differently from us. We weren't instructed to scream the loudest to prove we are "right".
Right is a strange word. It has so many means. Being RIGHT is all about perception. It is about your point of view and how your brain processes information. We are not clones of one another, neither are our brains.
We scream that war needs to end, the fighting needs to stop. Yet when will we stop condemning our neighbors for thinking differently than we do? When we will be done saying how ignorant everyone is when all they do is process information differently.
Every social media post does not require a response. You don't agree with them? I have a brilliant new invention for you. It's called..... wait for it.... scroll down. Or better yet, exit out and go live.
Take it from someone who knows how quickly the rug can get pulled out from under you. Each day is a gift. A chance to help our fellow men. The opportunity to make someones day a little brighter. A chance to call a cease fire to the war we've created that is only against each other. A war where no one is "right" no one is going to come out conqueror. A war that only hurts, never heals. Who are we trying to free when we are battling those around us? Ourselves?
I'll let you in on a little secret. That war was won a long time ago.
Lately, the world has turned into a place that will shame you for being different. We claim that everyone has the right to their own voice, but only if that voice aligns with your own. We shout for freedom of speech, but shun anyone who speaks too loudly about topics you don't agree with. We no longer turn a blind eye, but yell and curse and scream until we have proved we are right. And most often, our screaming is done by the few clicks of a keyboard. We feel we can hide behind a bright screen, yet say we are standing for our beliefs. We condemn those who ripple the pond in ways we don't want it to.
My mother taught me something when I was very little. She said, "Taylor, if you don't have anything nice to say, don't say anything at all." My mother taught all her daughters to be proud, independent, strong women who knew what we wanted out of life and weren't afraid to fight for it, yet never once did she say scream and yell at others to get there. She never told us to hate others who were different or thought differently from us. We weren't instructed to scream the loudest to prove we are "right".
Right is a strange word. It has so many means. Being RIGHT is all about perception. It is about your point of view and how your brain processes information. We are not clones of one another, neither are our brains.
We scream that war needs to end, the fighting needs to stop. Yet when will we stop condemning our neighbors for thinking differently than we do? When we will be done saying how ignorant everyone is when all they do is process information differently.
Every social media post does not require a response. You don't agree with them? I have a brilliant new invention for you. It's called..... wait for it.... scroll down. Or better yet, exit out and go live.
Take it from someone who knows how quickly the rug can get pulled out from under you. Each day is a gift. A chance to help our fellow men. The opportunity to make someones day a little brighter. A chance to call a cease fire to the war we've created that is only against each other. A war where no one is "right" no one is going to come out conqueror. A war that only hurts, never heals. Who are we trying to free when we are battling those around us? Ourselves?
I'll let you in on a little secret. That war was won a long time ago.
Thursday, January 14, 2016
Tales of a Retired Teacher
2 1/2 years. That is how long my teaching career lasted. Not long, but long enough. How did I come to this decision you might ask? Well for that explanation, we must take a small glimpse into the past. In June I was diagnosed with Cystic Fibrosis (CF). This disease is genetic so I've had it my whole life, I just didn't know what it was. Doctors would say that I would grow out of it, or that is was asthma. Ha, kinda wish I could give those doctors a visit to see the look on their faces, but I digress. CF is exacerbated by stress and germs. Working with 6/7 year old is like dipping myself in a vat of germs daily. Great visual I know. I took as many precautions as I could. We used hand sanitizer after every recess, we wiped off their desks with clorox wipes at the end of every day, we made sure to use tissues and cough into our elbows. Sadly, all my steps to avoid getting sick did not pay off. On October 22 last year, I woke up with lung pain. Very similar to chest pain, but when you have CF, you can tell the difference. I was so frustrated. It felt like the time I had pneumonia. I called my doctor and they asked me to go home from work until they could get me in. So, to my house I went to sit and wait. They asked me to come in about 9:30. Up to the University of Utah I went. After a few x-rays and an exam, they came to the conclusion I had a lung infection. The doctor I saw was not my usual doctor so we weren't that great of friends, and now not sure we'll ever be. I have a legitimate reason I assure you. After sending down blood work to be analyzed, my not-best-friend came into the exam room and said, "Well, call your school. We're admitting you."
I do have to admit I didn't think he was serious and was extremely sad when I realized he was. I was not allowed to go home at all, or leave the hospital under any circumstances. Thank goodness my angel of a mother was on her way. She kindly picked up my toothbrush and extra clothes. Here is the best (worst) part. They were admitting me for 10-14 days. 10-14 DAYS! My teacher brain was freaking out. How in the world could I create sub plans for that long? How could I leave my kids for that long? I was frazzled and discombobulated. The first few days weren't horrible, but in no way were they fun. Nurses came and went at all hours of the day and night, my veins were poked like a pin cushion. The doctor came in one day, not the one who admitted me, and talked to me about how long my imprisonment would be. Since I had just been diagnosed he wanted to keep me the whole 2 weeks, part of my soul died when he said that. As all good doctors do, he gave me a glimmer of hope along with the depressing news. He told me if I could get my breathing tests up past a certain percentage he would think about sending me home a little earlier. I latched onto that news like a barnacle on a ship. I did everything the doctors and nurses said I needed to. I did my respiratory therapy, I worked out everyday, I took at my meds. Along came judgement day, one week since I was admitted. Down I went to the area of my breathing tests. I breathed my very best. When it was completed, these tests are not the easiest, I was fidgeting in my chair awaiting my results. As I got the news, I totally blew it! I did better than the doctor wanted me to. I was so excited to take my results upstairs to the doctor. Even he was shocked. So, they let me out. I escaped the day before Halloween. On Monday, back to school I went. In the hospital I was on such heavy antibiotics that my already diminished immune system was wiped out. I got sick my first day back with a cold. It took me a month and 2 weeks to get over it. With everything that happened, the only thing I knew was that I wanted to live. So, after talking to TJ and doing a lot of praying and pondering, here we are. Me, retired at 23. Being away from the classroom has been tough, but also good for the lungs, head, and soul. I'll always be a teacher at heart. Next stop... Married life.
I do have to admit I didn't think he was serious and was extremely sad when I realized he was. I was not allowed to go home at all, or leave the hospital under any circumstances. Thank goodness my angel of a mother was on her way. She kindly picked up my toothbrush and extra clothes. Here is the best (worst) part. They were admitting me for 10-14 days. 10-14 DAYS! My teacher brain was freaking out. How in the world could I create sub plans for that long? How could I leave my kids for that long? I was frazzled and discombobulated. The first few days weren't horrible, but in no way were they fun. Nurses came and went at all hours of the day and night, my veins were poked like a pin cushion. The doctor came in one day, not the one who admitted me, and talked to me about how long my imprisonment would be. Since I had just been diagnosed he wanted to keep me the whole 2 weeks, part of my soul died when he said that. As all good doctors do, he gave me a glimmer of hope along with the depressing news. He told me if I could get my breathing tests up past a certain percentage he would think about sending me home a little earlier. I latched onto that news like a barnacle on a ship. I did everything the doctors and nurses said I needed to. I did my respiratory therapy, I worked out everyday, I took at my meds. Along came judgement day, one week since I was admitted. Down I went to the area of my breathing tests. I breathed my very best. When it was completed, these tests are not the easiest, I was fidgeting in my chair awaiting my results. As I got the news, I totally blew it! I did better than the doctor wanted me to. I was so excited to take my results upstairs to the doctor. Even he was shocked. So, they let me out. I escaped the day before Halloween. On Monday, back to school I went. In the hospital I was on such heavy antibiotics that my already diminished immune system was wiped out. I got sick my first day back with a cold. It took me a month and 2 weeks to get over it. With everything that happened, the only thing I knew was that I wanted to live. So, after talking to TJ and doing a lot of praying and pondering, here we are. Me, retired at 23. Being away from the classroom has been tough, but also good for the lungs, head, and soul. I'll always be a teacher at heart. Next stop... Married life.
Wednesday, July 1, 2015
Continuing the WOW moments...
We left off with life being jealous of my finding a wonderful relationship.
The month of April found me preparing for end of year testing, but sadly feeling horrible health wise. I was scared the pneumonia had flared up again. Back to instacare I went and so we find ourselves at WOW moment number 5. An x-ray of my lungs showed no change whatsoever after 2 prescriptions. As the doctor left I found myself sitting in the room alone with a paper of names of specialists that I needed to see immediately. A quote from the nurse is "You really need to see someone because you have a whole lot of I don't even know what in there." Thanks, that's really comforting.
WOW moment 6 is slightly lengthy, but mind blowing to say the least. I met with a specialist and after more medical tests than I could imagine, I was given a diagnosis. I had a heart ultrasound, 2 ct's of my chest, and a full panel of blood work done. The doctor asked if I could come in the next day to discuss results. I was presented with the diagnosis and was stunned. There was no history of this in my family and frankly, trying to hold in my emotions while talking to the doctor was becoming more difficult. The next step was presented and away I went. Three tests later, including a sweat test at primary childrens hospital, I had a confirmed diagnosis. At the age of 22 I was diagnosed with Cystic Fibrosis. Cystic Fibrosis is an inherited chronic disease that affects the lungs and digestive system. If you aren't cautious it can be life threatening. At this moment in time I was struggling with the now what, but I didn't stay in that moment for long. I now am a patient at the Cystic Fibrosis Clinic housed at the University of Utah Hospital. The only C.F. certified clinic in the surrounding 4 states. I have a nebulizer, a nifty machine that delivers medication through a compressor and I breathe in the mist, a breathing resistance tube to help clear my lungs, and enzymes to take when I eat to help me actually absorb nutrients. It has taken some getting used to, but for the most part its going alright.
There are still days when it's overwhelming and tough to breathe. C.F. brings the lovely symptoms of arthritis, digestive issues, a higher than normal chance to get sick and develop lung infections, and the lovely statistic that 1 in 5 women with C.F. can't have kids. The highlight of all of this is how great I've done in life despite having this since I was born. I have a college degree, a career, friends, and basically a life. Most adults diagnosed with Cystic Fibrosis have about 50% of their lung capacity left due to scarring from previous sicknesses. I still have 81% go me.
So, here I am, using summer vacation to recoup and get used to my new routines. I have to put more focus on myself and let myself take things at a slower pace while my body heals. Something I struggle with. We all take different roads through life and this is my bumpy one. I am grateful for my family and support system who stand beside me and help me when I feel like continuing on is just too hard. So everyone take a second to hug your lungs. Its hard to imagine how much they do for you until they can't preform their proper functions. Be careful out there people, and don't laugh at me when I have to wear a mask to my doctor visits.
The month of April found me preparing for end of year testing, but sadly feeling horrible health wise. I was scared the pneumonia had flared up again. Back to instacare I went and so we find ourselves at WOW moment number 5. An x-ray of my lungs showed no change whatsoever after 2 prescriptions. As the doctor left I found myself sitting in the room alone with a paper of names of specialists that I needed to see immediately. A quote from the nurse is "You really need to see someone because you have a whole lot of I don't even know what in there." Thanks, that's really comforting.
WOW moment 6 is slightly lengthy, but mind blowing to say the least. I met with a specialist and after more medical tests than I could imagine, I was given a diagnosis. I had a heart ultrasound, 2 ct's of my chest, and a full panel of blood work done. The doctor asked if I could come in the next day to discuss results. I was presented with the diagnosis and was stunned. There was no history of this in my family and frankly, trying to hold in my emotions while talking to the doctor was becoming more difficult. The next step was presented and away I went. Three tests later, including a sweat test at primary childrens hospital, I had a confirmed diagnosis. At the age of 22 I was diagnosed with Cystic Fibrosis. Cystic Fibrosis is an inherited chronic disease that affects the lungs and digestive system. If you aren't cautious it can be life threatening. At this moment in time I was struggling with the now what, but I didn't stay in that moment for long. I now am a patient at the Cystic Fibrosis Clinic housed at the University of Utah Hospital. The only C.F. certified clinic in the surrounding 4 states. I have a nebulizer, a nifty machine that delivers medication through a compressor and I breathe in the mist, a breathing resistance tube to help clear my lungs, and enzymes to take when I eat to help me actually absorb nutrients. It has taken some getting used to, but for the most part its going alright.
There are still days when it's overwhelming and tough to breathe. C.F. brings the lovely symptoms of arthritis, digestive issues, a higher than normal chance to get sick and develop lung infections, and the lovely statistic that 1 in 5 women with C.F. can't have kids. The highlight of all of this is how great I've done in life despite having this since I was born. I have a college degree, a career, friends, and basically a life. Most adults diagnosed with Cystic Fibrosis have about 50% of their lung capacity left due to scarring from previous sicknesses. I still have 81% go me.
So, here I am, using summer vacation to recoup and get used to my new routines. I have to put more focus on myself and let myself take things at a slower pace while my body heals. Something I struggle with. We all take different roads through life and this is my bumpy one. I am grateful for my family and support system who stand beside me and help me when I feel like continuing on is just too hard. So everyone take a second to hug your lungs. Its hard to imagine how much they do for you until they can't preform their proper functions. Be careful out there people, and don't laugh at me when I have to wear a mask to my doctor visits.
The "WOW" moments of Life
Throughout life we have those moments that all we can say is "WOW". Whether it is seen to add or detract from our lives, we have these moments. Moments that change the course of our life unlike any event that has happened before. This year has held many of these moments for me. Not all of them have put a smile on my face. To back up slightly, at the start of my second year of teaching, I was surplussed. WOW moment number 1. This means there weren't enough kids to keep me at my school so I was transferred to a school that didn't have enough teachers. I had one day to tear down the classroom I had just spent a month setting up, and one day to set up my new classroom. Leaving my kindergarteners was heartbreaking. Parents and students cried. Though thankfully, my new school was very welcoming and accommodating. I went back to first grade so at least I was familiar with the curriculum. This should have been a sign that this year was going to change my life in more ways than one.
So, the adventure started of getting a class 4 weeks into the year, trying to wipe their minds of all previous management skills and teach them mine. Throughout the year I had 11 students move in and out. The highest turn-over rate of any class in my school. I feel like I should have received a prize. And no, they didn't move out because they were scared of me. All students who moved out gave me a big hug and said they didn't want to leave.
At the start of November I moved to a new apartment and found what I thought was a lovely young lady to take over my lease. Jump ahead to January and this same lovely girl ditched out on rent, trashed the room she was in leaving illegal narcotics in the apt., provided an opportunity for the apartment to get robbed, and left me paying double rent until March. WOW moment number 2. Though I want to see the best in people, I have now learned to be more cautious.
Fast forward to March. In addition to the typical challenges of teaching, my health was crap this year. I was sick so often it was hard to feel like myself at all. One morning I got to school with alarming chest pain and difficulty breathing. Paramedics and EMT's later I was allowed to leave the principals office and head to instacare. An X-ray later I was diagnosed with double lung pneumonia. WOW moment number 3. Off to the pharmacy I went to fill 2 prescriptions and rest at home. Back to work after only 4 days of meds was not the smartest idea. I was very weak, but hoped my students would be helpful. They were their resilient selves and didn't leave much time to recoup. After finishing taking my meds, I was feeling good. Starting to get my energy back and not coughing so much.
WOW moment number 4 happened when I was least expecting as often WOW moments do. I met a man who is spectacular. I could not even dream of a man more thoughtful, caring, attentive, and kind. Though life tried its best to make this WOW moment fleeting, our relationship is still going strong. You'll find evidence of life being jealous and trying to end it in just a second.
So, the adventure started of getting a class 4 weeks into the year, trying to wipe their minds of all previous management skills and teach them mine. Throughout the year I had 11 students move in and out. The highest turn-over rate of any class in my school. I feel like I should have received a prize. And no, they didn't move out because they were scared of me. All students who moved out gave me a big hug and said they didn't want to leave.
At the start of November I moved to a new apartment and found what I thought was a lovely young lady to take over my lease. Jump ahead to January and this same lovely girl ditched out on rent, trashed the room she was in leaving illegal narcotics in the apt., provided an opportunity for the apartment to get robbed, and left me paying double rent until March. WOW moment number 2. Though I want to see the best in people, I have now learned to be more cautious.
Fast forward to March. In addition to the typical challenges of teaching, my health was crap this year. I was sick so often it was hard to feel like myself at all. One morning I got to school with alarming chest pain and difficulty breathing. Paramedics and EMT's later I was allowed to leave the principals office and head to instacare. An X-ray later I was diagnosed with double lung pneumonia. WOW moment number 3. Off to the pharmacy I went to fill 2 prescriptions and rest at home. Back to work after only 4 days of meds was not the smartest idea. I was very weak, but hoped my students would be helpful. They were their resilient selves and didn't leave much time to recoup. After finishing taking my meds, I was feeling good. Starting to get my energy back and not coughing so much.
WOW moment number 4 happened when I was least expecting as often WOW moments do. I met a man who is spectacular. I could not even dream of a man more thoughtful, caring, attentive, and kind. Though life tried its best to make this WOW moment fleeting, our relationship is still going strong. You'll find evidence of life being jealous and trying to end it in just a second.
Tuesday, August 12, 2014
Teacher, What's your name?
Kindergarten Orientation
In other words, preparing, being stressed out, scurrying around, making copies, and getting nervous to meet my new students and be with them for less than an hour.
How was it you may ask?
AMAZING!
At first, we were getting a little worried because NO ONE was there. We made 70 copies of this packet to hand out and we were making joke that we wouldn't have to make any copies for next year. Finally people started showing up and then they all came at once. The little kiddos were so shy! They were hiding behind their parents and when we would ask their names they would speak barely in a whisper. They are adorable! We met as a big group and talked a little bit about what they should know how to do and what we'll cover in kindergarten. Then the other kindergarten teacher and I took our kids back to our classrooms. Once the kids were away from their parents, they opened up so much! We read a story, sang some songs, took a tour of the classroom and then made our way to the playground. As we stood up, I decided to have us count to 10 and see just what my kids know. So, each step we took we would count. When we got to 10 we were at the classroom door. I then said, "Let's see if by the time we get to 10 again if we're outside." So, we walk and count and get to 10. I turned around and said, "Did we make it?" They all start giggling saying No teacher! We're stuck in the hall! I said Oh! We better do it again! By that time we had made it outside. They ran out to the playground and were so excited to have their own playground! One little one in my class was sad we didn't have swings. While outside, I had a few little ones come up to me. One asked what the classroom rules were. I told her we would go over them the first day of school. Another came up and said, "Teacher, what's your name?" When I said Miss Gough, I saw his little forehead scrunch up. I'll probably get called teacher a lot this year and that is just fine by me.
It was blazing hot outside. Thankfully we weren't out there long before parents started coming out and some of my class's parents wanted to talk. It was so great to get to meet them and start putting faces to names. The best feeling of the day though came when a few of the parents asked if this was my first year of teaching. Inside I was just on this pedestal to be able to say, "No, this is just my first year to Whittier." Inside I was feeling like BAM! 22 and on my second year of teaching. That is a magnificent feeling. I also was feeling great because everyone who came into my classroom said how cute, darling, adorable, and other wonderful adjectives it was.
Today, because of orientation, I was wearing a skirt. Decided to look the part. As I walked out of the copy room two other teachers were in there and as I walk out I hear, "Isn't our new kindergarten teacher just darling!" Ha I work with some wonderful people. I am so excited for this year to begin. I have spent hours upon hours in my classroom getting everything up, organized, and going through a closet that had 14 years of decorations in it!! 14!! And trust me, they were probably great back when they were new, but now.... not so great. My angel of a mother spent 2 days helping me go through everything. The biggest surprise in my closet... a tent. That's right my friends... a tent. I was going through a box that had turkey heads (don't ask me why) and I opened the box and said WHAT? so when my mom asked me what I wanted to do with the tent I turned and said WHAT? She started laughing and said that's what you said when I pulled it out and told you that there was a tent in here. I said oh sorry, that is when I found the box of turkey heads. Sigh, why in the world do I have a tent...So, back in when the tent and into the garbage went the turkey heads. I'm feeling pretty confident about this coming year though. Kindergarten, here I come.
Out in the hall, I created this bulletin board. All the puzzle pieces have their names on them and sometime this week I'll put up the banner that says "We all fit in kindergarten"
In other words, preparing, being stressed out, scurrying around, making copies, and getting nervous to meet my new students and be with them for less than an hour.
How was it you may ask?
AMAZING!
At first, we were getting a little worried because NO ONE was there. We made 70 copies of this packet to hand out and we were making joke that we wouldn't have to make any copies for next year. Finally people started showing up and then they all came at once. The little kiddos were so shy! They were hiding behind their parents and when we would ask their names they would speak barely in a whisper. They are adorable! We met as a big group and talked a little bit about what they should know how to do and what we'll cover in kindergarten. Then the other kindergarten teacher and I took our kids back to our classrooms. Once the kids were away from their parents, they opened up so much! We read a story, sang some songs, took a tour of the classroom and then made our way to the playground. As we stood up, I decided to have us count to 10 and see just what my kids know. So, each step we took we would count. When we got to 10 we were at the classroom door. I then said, "Let's see if by the time we get to 10 again if we're outside." So, we walk and count and get to 10. I turned around and said, "Did we make it?" They all start giggling saying No teacher! We're stuck in the hall! I said Oh! We better do it again! By that time we had made it outside. They ran out to the playground and were so excited to have their own playground! One little one in my class was sad we didn't have swings. While outside, I had a few little ones come up to me. One asked what the classroom rules were. I told her we would go over them the first day of school. Another came up and said, "Teacher, what's your name?" When I said Miss Gough, I saw his little forehead scrunch up. I'll probably get called teacher a lot this year and that is just fine by me.
It was blazing hot outside. Thankfully we weren't out there long before parents started coming out and some of my class's parents wanted to talk. It was so great to get to meet them and start putting faces to names. The best feeling of the day though came when a few of the parents asked if this was my first year of teaching. Inside I was just on this pedestal to be able to say, "No, this is just my first year to Whittier." Inside I was feeling like BAM! 22 and on my second year of teaching. That is a magnificent feeling. I also was feeling great because everyone who came into my classroom said how cute, darling, adorable, and other wonderful adjectives it was.
Today, because of orientation, I was wearing a skirt. Decided to look the part. As I walked out of the copy room two other teachers were in there and as I walk out I hear, "Isn't our new kindergarten teacher just darling!" Ha I work with some wonderful people. I am so excited for this year to begin. I have spent hours upon hours in my classroom getting everything up, organized, and going through a closet that had 14 years of decorations in it!! 14!! And trust me, they were probably great back when they were new, but now.... not so great. My angel of a mother spent 2 days helping me go through everything. The biggest surprise in my closet... a tent. That's right my friends... a tent. I was going through a box that had turkey heads (don't ask me why) and I opened the box and said WHAT? so when my mom asked me what I wanted to do with the tent I turned and said WHAT? She started laughing and said that's what you said when I pulled it out and told you that there was a tent in here. I said oh sorry, that is when I found the box of turkey heads. Sigh, why in the world do I have a tent...So, back in when the tent and into the garbage went the turkey heads. I'm feeling pretty confident about this coming year though. Kindergarten, here I come.
I saw this amazing idea and decided to use it. I put up command hooks in the back of my storage closet and clipped my borders together with binder clips. Then you just hang the clip on the storage hook and ta da! Nice and tidy. Finally a place for all the extra borders without folding them and shoving them in a closet to get ruined.
Tuesday, July 29, 2014
Summer Life of a Teacher
I survived what I deem the hardest year of my life. I feel quite proud of myself. When I look back at all that I've accomplished these past 12 months, I see how much I've grown and the woman I've become, I am comfortable with.
The last few days with my kiddos were pretty tough. I swear they all get together for the last day of school and make a pact to misbehave so that their teachers don't get all mushy. When we all met for the last pledge together by the flag pole, I was so ready for them to go. Sad, but true. When they were dismissed, I was lost for a minute. Not quite sure what to do until I almost got tackled from behind by two of my little munchkins. A few wanted pictures taken with me. The bittersweetness of being done, yet at the same time of making through my first year of teaching.
Less than a week after finished school, I left for Hawaii. The 2 hour plane ride from Utah to Seattle wasn't bad at all, but the 6 hour plane ride to Hawaii was a challenge. I tend to get bored easily when I can't move and am essentially stuck in the same spot. I also cannot sleep in public places so I was awake the entire flight. Hawaii is 4 hours behind Utah. When arriving there at 10:30pm, it was 2:30am in Utah. I was dead on my feet. I called my brother to see where he would be and he said walk south towards the pillar. As I walked south, two figures jumped out from behind the pillar and shouted, "Welcome to the Himalayas!" A lei was then chucked at my head and somehow landed around my neck. It was my wonderful brother and cousin. We dropped my brother off at the Naval base and then proceeded to the Army base where my cousin lives with his family. Everyone was asleep and I gladly collapsed into their spare bedroom. I was woken up at 6am by their adorable little girl. I was not all that excited at the time to be awake, but little did I know how greatly that helped me acclimate to the time change. The adventures were mind blowing! From the Dole plantation, a different beach almost every night, the punch bowl, Waikiki, and the sights were too gorgeous to be captured by a camera. Some of the most memorable times were when we stayed home and just talked, watched movies, and my heart was absolutely captured by their two kids. Abby who is 2 and Danny who is 4 months. Abby has these beautiful blonde curls and when we would go anywhere people thought she was mine and not her brunette mother's. I would love to have a little one like her one day. Danny likes to be held a lot, but isn't always sure he likes being held. What would drive my cousins crazy is when he would be finicky with them so I would take him. I always had a certain way I held him and rocked him. 8 times out of 10 he would fall asleep. His parents would look at me in disbelief! I loved it.
Now back to Miss Abigail for a second. She absolutely loves Frozen. If you had your phone out she would ask "Let it go song? Let it go song?" If you said, "Not right now." She would reply, " Thank you for asking nice." Haha yes Abby, thank you for asking nicely. Since this little miss would wake up before everyone, I had to start locking my door because I wasn't always coherent in the mornings and when she tried to walk out the door with an ibuprofen because she thought it was candy, I had to lock it. This would mean in the morning she would knock on my door and say, "Tayer, Tayer? Where are you?" I lost it the morning she knocked and said, "Tayer, want to build a snowman?" I started laughing so hard.
My cousins and brother were so amazing to comply to all my wants and where I wanted to go. I absolutely love them with all my heart and you wish your family was as amazing as mine. I can't wait to go back!
The last few days with my kiddos were pretty tough. I swear they all get together for the last day of school and make a pact to misbehave so that their teachers don't get all mushy. When we all met for the last pledge together by the flag pole, I was so ready for them to go. Sad, but true. When they were dismissed, I was lost for a minute. Not quite sure what to do until I almost got tackled from behind by two of my little munchkins. A few wanted pictures taken with me. The bittersweetness of being done, yet at the same time of making through my first year of teaching.
Less than a week after finished school, I left for Hawaii. The 2 hour plane ride from Utah to Seattle wasn't bad at all, but the 6 hour plane ride to Hawaii was a challenge. I tend to get bored easily when I can't move and am essentially stuck in the same spot. I also cannot sleep in public places so I was awake the entire flight. Hawaii is 4 hours behind Utah. When arriving there at 10:30pm, it was 2:30am in Utah. I was dead on my feet. I called my brother to see where he would be and he said walk south towards the pillar. As I walked south, two figures jumped out from behind the pillar and shouted, "Welcome to the Himalayas!" A lei was then chucked at my head and somehow landed around my neck. It was my wonderful brother and cousin. We dropped my brother off at the Naval base and then proceeded to the Army base where my cousin lives with his family. Everyone was asleep and I gladly collapsed into their spare bedroom. I was woken up at 6am by their adorable little girl. I was not all that excited at the time to be awake, but little did I know how greatly that helped me acclimate to the time change. The adventures were mind blowing! From the Dole plantation, a different beach almost every night, the punch bowl, Waikiki, and the sights were too gorgeous to be captured by a camera. Some of the most memorable times were when we stayed home and just talked, watched movies, and my heart was absolutely captured by their two kids. Abby who is 2 and Danny who is 4 months. Abby has these beautiful blonde curls and when we would go anywhere people thought she was mine and not her brunette mother's. I would love to have a little one like her one day. Danny likes to be held a lot, but isn't always sure he likes being held. What would drive my cousins crazy is when he would be finicky with them so I would take him. I always had a certain way I held him and rocked him. 8 times out of 10 he would fall asleep. His parents would look at me in disbelief! I loved it.
Now back to Miss Abigail for a second. She absolutely loves Frozen. If you had your phone out she would ask "Let it go song? Let it go song?" If you said, "Not right now." She would reply, " Thank you for asking nice." Haha yes Abby, thank you for asking nicely. Since this little miss would wake up before everyone, I had to start locking my door because I wasn't always coherent in the mornings and when she tried to walk out the door with an ibuprofen because she thought it was candy, I had to lock it. This would mean in the morning she would knock on my door and say, "Tayer, Tayer? Where are you?" I lost it the morning she knocked and said, "Tayer, want to build a snowman?" I started laughing so hard.
My cousins and brother were so amazing to comply to all my wants and where I wanted to go. I absolutely love them with all my heart and you wish your family was as amazing as mine. I can't wait to go back!
Wednesday, April 23, 2014
Not all that glitters is gold, but it is shiny.
That magic that I talked about in my last post, turns out it was just glitter that got in my eye. Shame isn't it.
But before I jump into things, I'll catch you up on my adorable monsters. They are all still alive and as talkative as ever. They are growing up right before my eyes, yet they still have the ability to drive me up the wall. As the year is winding down, I find end of year testing staring me in the face. As the older grades have to do SAGE testing (used to be CRT's) first and second grade get kicked out the computer labs and are left to fend for ourselves. Finding myself with no specialties to distract my students, there have been some extremely long days. Thankfully we still have P.E. Mondays. 45 glorious minutes to plan in quiet peace. Don't get me wrong, I absolutely adore my class, but anyone would go crazy after 6 1/2 hours with 6 & 7 year old with only you to entertain them for days on end.
I am definitely looking forward to taking next Friday off of work to GRADUATE from COLLEGE! It is finally here. Although I haven't really felt like a college student since last summer since my class in the fall was once a month and then I didn't have to take any classes in the Spring. Although I have felt the disappointment from my fellow graduates, I will not be walking. I don't really see the point to go sit for three hours to still not get my degree certificate until they mail it to me 2 weeks later. I will be taking myself to lunch and hopefully spend the day in the wonderful company of my family. It is surreal. I was in school for so long and then jumped head first into my career. Walking just seems, unimportant. Sorry guys.
Anywho, back to my class. They have grown so much the past couple months. I completely changed the way I run small groups and they are going so well. My amazing reading specialist has really taken me under her wing and in all honesty, has changed my life. She came into my classroom when I was at such a low and turned around my attitude. Not only have my kids grown, but I have found out who I am. I am someone who can accomplish hard things and can look adversity in the eye, and come out stronger. I thought I had some idea of what I was getting into when I accepted my internship, but I have NO IDEA what actually was waiting for me. This has been the hardest year of my life, and yet here I am. Alive, well, healthy, and with a smile on my face.
Alright, onto the boy I wrote about in my last post. He was like a coconut cake. Pretty to look at, a nice treat to have sitting on the counter, but when it came to actually partaking of it and keeping it, I couldn't do it. For those of you who don't know, I hate coconut. Valentine's Day came around and he and I went to Tucanos for dinner. That place was amazing! We then went back to his house where he proceeded to propose. I was shocked. He had joked about doing it, but I had no idea he actually would. I said yes though my head was hesitant. It was a gorgeous sapphire ring set in white gold. After being engaged almost a month and having quite a few things planned, I realized I couldn't go through with it. He and I were just too different and would have ended up miserable in a few years. I promise, I wasn't being selfish or difficult. I finally saw what he was actually like, and realized, I need someone with the same foundation as me. So, I gave back the ring after he said some not so nice things and walked out. To my dismay, he never tried to contact me again. Supposedly he wanted to marry me and loved me, just not enough to fight for me. It stung a little at the time, but now it honestly doesn't surprise me. This happened March 9th and by March 24th, I had found an apartment with my friend and moved out of my parents house. Within just a couple months, I had a lot happen and found myself growing again.
Now, life is life and I still have the same struggles as before. Patience. With the school year ending, so does my one year contract and here I am looking for a new position at a different school. I applied at the school I am working at now, but they went with someone else. That was a hard blow and tripped me up for a couple days. I have been through 6 interviews so far and hopefully find my dream school soon. I am not looking forward to taking my classroom apart and having to take it elsewhere, but I will do it with a heavy heart. When the school year first started, I was counting down the months till I would be done, and now that the deadline is coming, I don't want it to end. I will miss my kids so much and the people I have gotten to know have changed my life.
As this journey continues, it will be interesting to see how I continue to grow and find myself even more. Turns out what doesn't kill you really does make you stronger. Except polio.
But before I jump into things, I'll catch you up on my adorable monsters. They are all still alive and as talkative as ever. They are growing up right before my eyes, yet they still have the ability to drive me up the wall. As the year is winding down, I find end of year testing staring me in the face. As the older grades have to do SAGE testing (used to be CRT's) first and second grade get kicked out the computer labs and are left to fend for ourselves. Finding myself with no specialties to distract my students, there have been some extremely long days. Thankfully we still have P.E. Mondays. 45 glorious minutes to plan in quiet peace. Don't get me wrong, I absolutely adore my class, but anyone would go crazy after 6 1/2 hours with 6 & 7 year old with only you to entertain them for days on end.
I am definitely looking forward to taking next Friday off of work to GRADUATE from COLLEGE! It is finally here. Although I haven't really felt like a college student since last summer since my class in the fall was once a month and then I didn't have to take any classes in the Spring. Although I have felt the disappointment from my fellow graduates, I will not be walking. I don't really see the point to go sit for three hours to still not get my degree certificate until they mail it to me 2 weeks later. I will be taking myself to lunch and hopefully spend the day in the wonderful company of my family. It is surreal. I was in school for so long and then jumped head first into my career. Walking just seems, unimportant. Sorry guys.
Anywho, back to my class. They have grown so much the past couple months. I completely changed the way I run small groups and they are going so well. My amazing reading specialist has really taken me under her wing and in all honesty, has changed my life. She came into my classroom when I was at such a low and turned around my attitude. Not only have my kids grown, but I have found out who I am. I am someone who can accomplish hard things and can look adversity in the eye, and come out stronger. I thought I had some idea of what I was getting into when I accepted my internship, but I have NO IDEA what actually was waiting for me. This has been the hardest year of my life, and yet here I am. Alive, well, healthy, and with a smile on my face.
Alright, onto the boy I wrote about in my last post. He was like a coconut cake. Pretty to look at, a nice treat to have sitting on the counter, but when it came to actually partaking of it and keeping it, I couldn't do it. For those of you who don't know, I hate coconut. Valentine's Day came around and he and I went to Tucanos for dinner. That place was amazing! We then went back to his house where he proceeded to propose. I was shocked. He had joked about doing it, but I had no idea he actually would. I said yes though my head was hesitant. It was a gorgeous sapphire ring set in white gold. After being engaged almost a month and having quite a few things planned, I realized I couldn't go through with it. He and I were just too different and would have ended up miserable in a few years. I promise, I wasn't being selfish or difficult. I finally saw what he was actually like, and realized, I need someone with the same foundation as me. So, I gave back the ring after he said some not so nice things and walked out. To my dismay, he never tried to contact me again. Supposedly he wanted to marry me and loved me, just not enough to fight for me. It stung a little at the time, but now it honestly doesn't surprise me. This happened March 9th and by March 24th, I had found an apartment with my friend and moved out of my parents house. Within just a couple months, I had a lot happen and found myself growing again.
Now, life is life and I still have the same struggles as before. Patience. With the school year ending, so does my one year contract and here I am looking for a new position at a different school. I applied at the school I am working at now, but they went with someone else. That was a hard blow and tripped me up for a couple days. I have been through 6 interviews so far and hopefully find my dream school soon. I am not looking forward to taking my classroom apart and having to take it elsewhere, but I will do it with a heavy heart. When the school year first started, I was counting down the months till I would be done, and now that the deadline is coming, I don't want it to end. I will miss my kids so much and the people I have gotten to know have changed my life.
As this journey continues, it will be interesting to see how I continue to grow and find myself even more. Turns out what doesn't kill you really does make you stronger. Except polio.
Tuesday, February 4, 2014
Extra, Extra Read all About it
It has been quite a while since I have reflected about my journey so far.
Today, that." journey is quite amazing and adventuresome. Tomorrow is the 100th day of school. I have officially been a teacher for 100 days. That is a lot of days, yet it still seems like, really? only 100? I am happy to report that all my students are still trudging along with me. I recently got a new student which was something new to experience of trying to get all his supplies gathered and I didn't know I had a new student until the morning of when the secretary called into my classroom asking me to send down a student to come show my new student where our classroom was. The kids were so excited. During morning meeting that day, our new student said he was kind of nervous and quiet. Another student of mine said, "Yeah, at the first of the year I was scared too cause it was my first time here too so I didn't talk much." I then said, "And as you can see we must be nice because he got over it quick and they all talk all of the time." My class is so chatty. Even when they talk all recess, lunch, and another recess, they still cannot sit still. We are constantly doing "Simon Says", jumping jacks, head shoulder knees and toes, and countless brainboosters. They are adorable and full of energy.
My greatest achievement this year though has been my ESL student. This means he is learning English as a second language. At the first of the year he didn't say a single word and slowly he started asking to go to the bathroom, saying my name, and telling me about Mario Kart. At the beginning of the year testing, he scored low in knowing his alphabet and could not read any nonsense words. Middle of year, he could say 13 sounds for nonsense words and last week, when working with him, he said 28 sounds and read 3 whole words. I honestly almost started crying. I was so proud of him and he just has this huge smile on his face and gives me a hug. I cannot express how proud of him I am. They say each child deserves one year of growth in one years time. No matter where they start from, one year of growth. I feel with this child, he has already exceeded a years worth of growth from where he started from and we can only go up.
In other news, I am dating the most wonderful man I have ever met. He is amazing, sweet, handsome as none other, kind, smart, funny, and sweeps me off my feet. I had no idea that going to Kneaders December 4, 2013 would alter my life this drastically, but I am so excited it has. Yes, it is serious. It is two months today that we have been together. We have so many similarities, yet still have our differences to make things interesting. I am so blessed to have someone who adores me and isn't afraid to tell me. I often wonder what I did to deserve someone so incredible as him.
That is all for now. My heart is full of joy and my life an unfolding trail full of magic.
Today, that." journey is quite amazing and adventuresome. Tomorrow is the 100th day of school. I have officially been a teacher for 100 days. That is a lot of days, yet it still seems like, really? only 100? I am happy to report that all my students are still trudging along with me. I recently got a new student which was something new to experience of trying to get all his supplies gathered and I didn't know I had a new student until the morning of when the secretary called into my classroom asking me to send down a student to come show my new student where our classroom was. The kids were so excited. During morning meeting that day, our new student said he was kind of nervous and quiet. Another student of mine said, "Yeah, at the first of the year I was scared too cause it was my first time here too so I didn't talk much." I then said, "And as you can see we must be nice because he got over it quick and they all talk all of the time." My class is so chatty. Even when they talk all recess, lunch, and another recess, they still cannot sit still. We are constantly doing "Simon Says", jumping jacks, head shoulder knees and toes, and countless brainboosters. They are adorable and full of energy.
My greatest achievement this year though has been my ESL student. This means he is learning English as a second language. At the first of the year he didn't say a single word and slowly he started asking to go to the bathroom, saying my name, and telling me about Mario Kart. At the beginning of the year testing, he scored low in knowing his alphabet and could not read any nonsense words. Middle of year, he could say 13 sounds for nonsense words and last week, when working with him, he said 28 sounds and read 3 whole words. I honestly almost started crying. I was so proud of him and he just has this huge smile on his face and gives me a hug. I cannot express how proud of him I am. They say each child deserves one year of growth in one years time. No matter where they start from, one year of growth. I feel with this child, he has already exceeded a years worth of growth from where he started from and we can only go up.
In other news, I am dating the most wonderful man I have ever met. He is amazing, sweet, handsome as none other, kind, smart, funny, and sweeps me off my feet. I had no idea that going to Kneaders December 4, 2013 would alter my life this drastically, but I am so excited it has. Yes, it is serious. It is two months today that we have been together. We have so many similarities, yet still have our differences to make things interesting. I am so blessed to have someone who adores me and isn't afraid to tell me. I often wonder what I did to deserve someone so incredible as him.
That is all for now. My heart is full of joy and my life an unfolding trail full of magic.
Sunday, October 27, 2013
Advocate, Advisor, Problem Solver, Best Teacher EVER
These words are just some of the words I can use to describe my job. And that last one is not a personal opinion. My adorable monsters said that themselves after we used M&Ms in math. It's funny how the appearance of M&Ms makes me amazing and wonderful.
First: Advocate
My little girl who controls nothing in her life, she is gone. Her parent lost custody and she is now moving to a new state. It isn't fair! I have been working so hard to help this child feel safe, welcome, and loved and the whoosh. The rug gets ripped out from under me and my heart is broken. I have no idea what is going to happen to this little girl. I have prayed and prayed that her new teacher is sensitive to her needs, makes her feel loved, and genuinely cares about this child. As I was told she was leaving at the end of the week, my job dropped, my mouth and heart said no! and my brain could not comprehend it. I got a book and wrote her a small message telling her how much I loved being her teacher and how she can accomplish anything if she works hard. I then had all my students sign their names in the front of the book. While trying to accomplish this, we were watching an educational film. I called my first student over and I had to call his name a few times. When he finally came over he says exasperated, "Miss Gough, I didn't do anything!" I had to laugh and whispered, "No, sign the book!" He then got really excited. As whispers went around the room to go sign the book keeping it a secret from the student leaving, the girls in my class started bringing me cards and pictures they had made for this little girl. As Friday came, we cleaned out her desk, presented her with the book, and child after child went up to her and said they would miss her.
I was telling the school counselor about this (who was also heartbroken this little girl was leaving) and she told me how amazing I was. I asked how so and she replied, you made this little girl feel included and loved. She easily could have been ostracized and pushed aside, but through my hard work and dedication, it became more than a class. They became friends. I just hope her next class will look past her outbursts and see the beautiful little girl underneath it all.
Second: Advisor/Problem Solver
Our school is teaching the 7 Habits of Happy Kids. This includes being Proactive. I love it. I love it because when I start to hear the beginnings of tattling and see both hands shoot up in the air, I simple walk over to the students and say are you being proactive? This is usually met with But Miss Gough! I say no, are you being proactive. Then again But they, teacher! And again no, are You being proactive? At this point both students usually sigh and say no. I laugh on the inside and say alright let's work a little harder at that. I feel like it is a great program and the kids are actually using the terminology. It makes my heart smile a little each time.
As a teacher, we get involved, attached, take a personal interest, and sometimes want to take these children home to have them live with someone who loves them. As I leave the doors of the school, I have to physically shake off the day and leave the classroom problems there, inside the classroom. These children's lives can consume you and break your heart.
Why is the world such a hard place?
First: Advocate
My little girl who controls nothing in her life, she is gone. Her parent lost custody and she is now moving to a new state. It isn't fair! I have been working so hard to help this child feel safe, welcome, and loved and the whoosh. The rug gets ripped out from under me and my heart is broken. I have no idea what is going to happen to this little girl. I have prayed and prayed that her new teacher is sensitive to her needs, makes her feel loved, and genuinely cares about this child. As I was told she was leaving at the end of the week, my job dropped, my mouth and heart said no! and my brain could not comprehend it. I got a book and wrote her a small message telling her how much I loved being her teacher and how she can accomplish anything if she works hard. I then had all my students sign their names in the front of the book. While trying to accomplish this, we were watching an educational film. I called my first student over and I had to call his name a few times. When he finally came over he says exasperated, "Miss Gough, I didn't do anything!" I had to laugh and whispered, "No, sign the book!" He then got really excited. As whispers went around the room to go sign the book keeping it a secret from the student leaving, the girls in my class started bringing me cards and pictures they had made for this little girl. As Friday came, we cleaned out her desk, presented her with the book, and child after child went up to her and said they would miss her.
I was telling the school counselor about this (who was also heartbroken this little girl was leaving) and she told me how amazing I was. I asked how so and she replied, you made this little girl feel included and loved. She easily could have been ostracized and pushed aside, but through my hard work and dedication, it became more than a class. They became friends. I just hope her next class will look past her outbursts and see the beautiful little girl underneath it all.
Second: Advisor/Problem Solver
Our school is teaching the 7 Habits of Happy Kids. This includes being Proactive. I love it. I love it because when I start to hear the beginnings of tattling and see both hands shoot up in the air, I simple walk over to the students and say are you being proactive? This is usually met with But Miss Gough! I say no, are you being proactive. Then again But they, teacher! And again no, are You being proactive? At this point both students usually sigh and say no. I laugh on the inside and say alright let's work a little harder at that. I feel like it is a great program and the kids are actually using the terminology. It makes my heart smile a little each time.
As a teacher, we get involved, attached, take a personal interest, and sometimes want to take these children home to have them live with someone who loves them. As I leave the doors of the school, I have to physically shake off the day and leave the classroom problems there, inside the classroom. These children's lives can consume you and break your heart.
Why is the world such a hard place?
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