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.
Tuesday, September 26, 2017
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.
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