The title say it all: CF is weird! I went to clinic Monday and coming off a pretty horrendous cold I figured my numbers would be low(ish). I was expecting the low to mid 30s. I blew a shitty 25% which is a new low for me. And although that number is super scary low it did not represent how I felt at all. I walked 2 flights to get to clinic...I can't even do that when I am 35%. I don't understand how my numbers are drastically different than the way I feel. I knew I didn't feel like my baseline, but 25% is about as scary as it gets when you aren't on the transplant list.
Considering that number is so very low and extraordinarily scary I just knew I would be going inpatient and felt a bit devastated that I would be miss out on everything holiday related before Christmas. Kaylee's days are numbered where she will still believe in Santa and I didn't want to miss out on perhaps the last year of a magical Christmas.
And then my doctor decided to put me back on Avycaz and an antibiotic for staph which meant I would be doing home IVs. Considering everything I wrote leading up to this sentence I should have been happy with his decision, but mainly I just feel afraid. I have been on IVs 3 times since October (averaging every month!) and I just want to get better so badly. There is so much more pressure to do well when I am at home because everything falls on me. I know that even in the hospital I am the one doing breathing treatments and it is MY body that is trying to heal, but it feels like if I fail...the blame is shared between the hospital staff too. I know that sounds weird and logically doesn't make sense, but I feel like if I don't get better on home IVs I am the only one at fault (well, and CF too!). The wiggle room I used to have in my pfts have slowly disappeared over the years and I know that CF can get deadly so very quickly. I have seen it happen too many times too stay in denial.
Maybe this is a rough patch...I have had them before. Maybe this is a hump to get over to get back to my normal life. But maybe it isn't. Maybe this is a sign my lungs are too tired. I have never been the gambling type and so I won't gamble with this either. I want to be prepared if this bump turns into a downward spiral. And so with lots of tears and a long talk that went well into the night my husband and I decided we needed to start the process for transplant. I never doubted I wanted a transplant. I really do love living and I have so much to live for! How could I leave my daughter motherless?? How could I leave my husband alone on this Earth? I would do anything to live longer than CF will allow and transplant is the only chance at getting extra years.
But I never would have imagined how hard it would be to step over the threshold from "someday..." to "now" when it came to transplant talks. I feel like I failed having to admit that my journey with my CF lungs is over. I know that CF ends the same for every person and so it can't be seen as a failure, but as the inevitable, but that doesn't change the sense of failure I feel turning to the last resort when it comes to CF. I worry I am not strong enough to endure all that entails both physically and emotionally that comes with transplant. I feel sad for my lungs. They worked tirelessly even with all odds stacked against them to let me live these beautiful 34 years and I hate to see them go. I know, I know. It makes no sense to feel attached to an organ, but there is no organ in the world that has worked so hard for me than my lungs and again I feel like I am failing by choosing to replace them. I am so so afraid of what the process will do to my family. Just the thought fills me with so much mama guilt it makes my heart hurt in my chest. And what if they go through all the worry and stress and then it doesn't work?
I know none of these questions can ever be answered and the worry will never fully resolve, but I need to focus on choosing a transplant clinic that I think will suite me best. And in the meantime I need to work as hard as I can to delay the need for transplant as long as possible.
Showing posts with label Sickness. Show all posts
Showing posts with label Sickness. Show all posts
Sunday, December 16, 2018
Monday, November 26, 2018
Expectations
It is human nature to try set goals and work towards achieving them. Nobody want to remain stagnant in any aspect of their lives: relationships, career, education. We have a drive that pulses through us so that we can continue to achieve our dreams and goals and pursue a life full of richness and fulfillment. This drive pulses through me just as strongly as it did when I went off to college, when I applied to jobs, when I went up for a promotion and when I wanted to become a mother. But I am struggling so much with taking that drive and that passion and making it a reality as CF presents itself more and more in my daily life.
CF has changed the way I view myself, specifically in the past 5 years. As my health situation has become more complicated I have trouble living the life as the person I think I am. I have always been driven and hard working and prided myself on doing well in school and in my careers. But lately my health seems to get in the way of all of my goals, not just the far reaching career and life purpose goals. Small goals like improving my swim times are constantly set back to zero by an exacerbation which leaves me too short of breath to swim more than a few laps. And even more basic goals like "I am going to catch up on laundry this weekend" get pushed aside when I wake up sick and unable to get out of bed.
In this season f my life I have been trying to focus on letting go of all expectations and just let my life ride out in the way it was meant to be (dictated by my health) and in many practical ways I have learned to adapt. I do everything early when I can because I know when the time comes I may be too sick to fulfill my duties. Like this fall when I bough Kaylee's backpack a month early, but didn't get shoes for her. I ended up sick the week before school started and she didn't get back to school shoes or other nonessential, but fun new items for the new school year. I write things on my calendar knowing there is a good chance that my health won't allow me to follow through. I say no more often than yes when given invitations trying to preserve my energy and minimize my germ exposure. But the practical ways of adapting are easy. It is the emotional adaptation that seems to be a struggle.
For so long Kaylee filled all my desire to feel successful because being a good mother is the most important job in the world and it was a 24/7 job that used up all of my energy and left me happy and full of pride each night. But as she has gotten older and needs me less and less I find more time in my day that I am not needed which makes me want to push myself to take on new responsibilities. With Kaylee in school full time I am finding myself with a lot of free time and that calling to do more, to be more is in full force.
A few weeks ago an opportunity fell in my lap that seemed to be the answer to my need to do more. A mom in Kaylee's class sought me out because she knew my background in education. Her daughter is dyslexic and she wanted my help through a specific program to tutor her daughter. She paid for the training and told me that the demand for these tutors in Kaylee's school alone was high and she had several families that may be interested in the same services. The hourly rate is high and the schedule flexible. I felt like this would be the perfect jumping off point in making money and starting my own business. Finally, I felt a little hope towards a fulfilling career. My husband was on board and we both felt so much excitement for this new endeavor.
The day before my first tutoring session I got sick. I coughed for 24 hours straight. I was able to tutor, but within hours of the student leaving my voice completely disappeared which happens every single time I am sick. The next day I wasn't able to get out of bed. The negative side of me felt so stupid for believing that maybe I could try to spread my wings and be human. I felt dumb for thinking I could push CF aside and try to do something for myself. The hopeful part of my brain that usually cheers me on even when the odds are slim was quiet for the first tie in a very long time. I haven't been well since September. Despite two rounds of IVs and a few rounds of orals, I seem to be in a pattern of sickness that my body can't pull out of. I have been here before and I know I will be here again, but right now it feels like a sinking hole I can't get out of. I also know when I sit here in the bottom of the pit of sickness my hope slowly starts to slip away. With CF the only way to survive is to hold on to hope because we really don't have anything else to grasp for.
For now, I am pausing my plans to build a business. It feels like a failure, but maybe it is just a pause button on a future success. Maybe the timing isn't right. Maybe it never will be, but if the time ever is right I know I have a plan. Maybe when I crawl out of this pattern of sickness I will reassess and try again. I will keep this one student and maybe over the next few years I can add a few more. Maybe I can't, but maybe by then I will have learned to let go of the expectations of what life should be like and just live the life I was given.
CF has changed the way I view myself, specifically in the past 5 years. As my health situation has become more complicated I have trouble living the life as the person I think I am. I have always been driven and hard working and prided myself on doing well in school and in my careers. But lately my health seems to get in the way of all of my goals, not just the far reaching career and life purpose goals. Small goals like improving my swim times are constantly set back to zero by an exacerbation which leaves me too short of breath to swim more than a few laps. And even more basic goals like "I am going to catch up on laundry this weekend" get pushed aside when I wake up sick and unable to get out of bed.
In this season f my life I have been trying to focus on letting go of all expectations and just let my life ride out in the way it was meant to be (dictated by my health) and in many practical ways I have learned to adapt. I do everything early when I can because I know when the time comes I may be too sick to fulfill my duties. Like this fall when I bough Kaylee's backpack a month early, but didn't get shoes for her. I ended up sick the week before school started and she didn't get back to school shoes or other nonessential, but fun new items for the new school year. I write things on my calendar knowing there is a good chance that my health won't allow me to follow through. I say no more often than yes when given invitations trying to preserve my energy and minimize my germ exposure. But the practical ways of adapting are easy. It is the emotional adaptation that seems to be a struggle.
For so long Kaylee filled all my desire to feel successful because being a good mother is the most important job in the world and it was a 24/7 job that used up all of my energy and left me happy and full of pride each night. But as she has gotten older and needs me less and less I find more time in my day that I am not needed which makes me want to push myself to take on new responsibilities. With Kaylee in school full time I am finding myself with a lot of free time and that calling to do more, to be more is in full force.
A few weeks ago an opportunity fell in my lap that seemed to be the answer to my need to do more. A mom in Kaylee's class sought me out because she knew my background in education. Her daughter is dyslexic and she wanted my help through a specific program to tutor her daughter. She paid for the training and told me that the demand for these tutors in Kaylee's school alone was high and she had several families that may be interested in the same services. The hourly rate is high and the schedule flexible. I felt like this would be the perfect jumping off point in making money and starting my own business. Finally, I felt a little hope towards a fulfilling career. My husband was on board and we both felt so much excitement for this new endeavor.
The day before my first tutoring session I got sick. I coughed for 24 hours straight. I was able to tutor, but within hours of the student leaving my voice completely disappeared which happens every single time I am sick. The next day I wasn't able to get out of bed. The negative side of me felt so stupid for believing that maybe I could try to spread my wings and be human. I felt dumb for thinking I could push CF aside and try to do something for myself. The hopeful part of my brain that usually cheers me on even when the odds are slim was quiet for the first tie in a very long time. I haven't been well since September. Despite two rounds of IVs and a few rounds of orals, I seem to be in a pattern of sickness that my body can't pull out of. I have been here before and I know I will be here again, but right now it feels like a sinking hole I can't get out of. I also know when I sit here in the bottom of the pit of sickness my hope slowly starts to slip away. With CF the only way to survive is to hold on to hope because we really don't have anything else to grasp for.
For now, I am pausing my plans to build a business. It feels like a failure, but maybe it is just a pause button on a future success. Maybe the timing isn't right. Maybe it never will be, but if the time ever is right I know I have a plan. Maybe when I crawl out of this pattern of sickness I will reassess and try again. I will keep this one student and maybe over the next few years I can add a few more. Maybe I can't, but maybe by then I will have learned to let go of the expectations of what life should be like and just live the life I was given.
Saturday, October 28, 2017
Medication Rules
Anyone else feel like trying to take oral antibiotics the right way is somewhat of a puzzle? You would think popping a pill two times a day is easy, but of course they have to add all these "rules" that complicate everything! And at my age if I am going to take an antibiotic I am going to take the damn thing right because I am not messing around when it comes to CF.
My current antibiotic rules per my pill bottle:
"Take this medication 2 hours before or 6 hours after meals, antacids, vitamins/minerals."
Also
"Do not take with dairy"
Before I head to the gym I usually drink a glass of milk, but since I can't take cipro with dairy or 6 (Yes, six) hours after eating I figured this is the best time to fit in my antibiotic. So my pre-gym routine is currently (and temporarily) a glass of water, cipro, and minocycline. Easy enough! By the time I work out, shower, dress, and do treatments I am around the two hour mark.
The evening dose is a little trickier. I take an antacid in the evening (I know you are supposed to take it in the morning. Long story, but basically I do it all wrong so don't be like me). Antacids and cipro don't mix. Fair enough. I also take Orkambi in the evening which needs to be taken with fatty food. Oh wait, Cipro can't be in that mix either. So I had the perfect plan. Eat dinner, six hours later take my antibiotics. Set my alarm for 2 hours and go to bed. I had my Orkambi, enzymes, my night meds and some string cheese sitting next to a glass of water next to my bed waiting for my alarm to go off. Great idea, right?
Except in the morning I woke up to realize I must have never actually set the alarm because there everything sat untouched next to my bed. Sigh! I am frustrated with myself because I was up coughing at one point and I wish I would have been coherent enough to see my meds next to the bed. So I got my antibiotics in, but missed everything else last night!
And before I sound like a spoiled brat, I do realize this puzzling oral antibiotic schedule is a piece of cake compared to IV schedules or hospital stays and I am grateful that I am able to do oral antibiotics (and I super hope it works this time)!
My current antibiotic rules per my pill bottle:
"Take this medication 2 hours before or 6 hours after meals, antacids, vitamins/minerals."
Also
"Do not take with dairy"
Before I head to the gym I usually drink a glass of milk, but since I can't take cipro with dairy or 6 (Yes, six) hours after eating I figured this is the best time to fit in my antibiotic. So my pre-gym routine is currently (and temporarily) a glass of water, cipro, and minocycline. Easy enough! By the time I work out, shower, dress, and do treatments I am around the two hour mark.
The evening dose is a little trickier. I take an antacid in the evening (I know you are supposed to take it in the morning. Long story, but basically I do it all wrong so don't be like me). Antacids and cipro don't mix. Fair enough. I also take Orkambi in the evening which needs to be taken with fatty food. Oh wait, Cipro can't be in that mix either. So I had the perfect plan. Eat dinner, six hours later take my antibiotics. Set my alarm for 2 hours and go to bed. I had my Orkambi, enzymes, my night meds and some string cheese sitting next to a glass of water next to my bed waiting for my alarm to go off. Great idea, right?
Except in the morning I woke up to realize I must have never actually set the alarm because there everything sat untouched next to my bed. Sigh! I am frustrated with myself because I was up coughing at one point and I wish I would have been coherent enough to see my meds next to the bed. So I got my antibiotics in, but missed everything else last night!
And before I sound like a spoiled brat, I do realize this puzzling oral antibiotic schedule is a piece of cake compared to IV schedules or hospital stays and I am grateful that I am able to do oral antibiotics (and I super hope it works this time)!
Saturday, October 7, 2017
Fevers, Flu Shots, and Colds
I was hesitant to write this post because the last thing I want to do is scare someone away from getting a flu shot since you getting a flu shot could save a cyster's (or fibro's) life and all. So I am going to preface this by saying that I have always reacted strongly to vaccinations. I get a fever from every single vaccination every single time! So this years flu shot was no different.
Monday morning I woke up with a little strange tickle in my throat. I kept wondering if the sensation could possibly be a cold, or allergies, or my imagination (funny how these symptoms popped up right after I did a post about how well my body was behaving). I had scheduled flu shots for both me and Kaylee that afternoon and I was a bit worried I may be coming down with something and wondered if I should delay the shot. I decided to get the shot anyway because I am going to be around a lot of kids in the next coming weeks and just didn't want to risk anything. We went to get our flu shots immediately after I picked Kaylee up from school. Poor kid had no idea that the errand we had to run would end with her getting poked with a needle. She cried when I explained why we were at the doctor and even tried to hide her arm from the nurse. The nurse told Kaylee to look the other direction. I started to say, "Focus on my..." when the nurse interrupted to say, "all done." Kaylee shouted with excitement, "That was TOO fast!" She didn't even realize that she just got a shot. She actually left the little shot room with a smile plastered on her face. Whew.
I was brave when I got my shot too and we went to celebrate with a little ice cream. That night, I got fevers which we all expected. The next day same thing and once again, expected. I should note Kaylee carried on as if nothing happened and no sign on a fever at all.
As soon as the fevers passed my cold hit. I had the usual, coughing incessantly for 24 hours followed by zero voice (from all the coughing). When the incessant coughing finally stopped I was left with a heavy chest and copious amount of watery mucus (happens every time my cold settles to my chest). And now I am in that weird period that my mucus is thick and gross and I know that in the next few days my mucus will get worse and I will be calling for antibiotics or it will suddenly clear up and I will be able to move on with life. Sigh! I have so much going on this upcoming week that I am really hoping my poor body can pull through this one.
Monday morning I woke up with a little strange tickle in my throat. I kept wondering if the sensation could possibly be a cold, or allergies, or my imagination (funny how these symptoms popped up right after I did a post about how well my body was behaving). I had scheduled flu shots for both me and Kaylee that afternoon and I was a bit worried I may be coming down with something and wondered if I should delay the shot. I decided to get the shot anyway because I am going to be around a lot of kids in the next coming weeks and just didn't want to risk anything. We went to get our flu shots immediately after I picked Kaylee up from school. Poor kid had no idea that the errand we had to run would end with her getting poked with a needle. She cried when I explained why we were at the doctor and even tried to hide her arm from the nurse. The nurse told Kaylee to look the other direction. I started to say, "Focus on my..." when the nurse interrupted to say, "all done." Kaylee shouted with excitement, "That was TOO fast!" She didn't even realize that she just got a shot. She actually left the little shot room with a smile plastered on her face. Whew.
I was brave when I got my shot too and we went to celebrate with a little ice cream. That night, I got fevers which we all expected. The next day same thing and once again, expected. I should note Kaylee carried on as if nothing happened and no sign on a fever at all.
As soon as the fevers passed my cold hit. I had the usual, coughing incessantly for 24 hours followed by zero voice (from all the coughing). When the incessant coughing finally stopped I was left with a heavy chest and copious amount of watery mucus (happens every time my cold settles to my chest). And now I am in that weird period that my mucus is thick and gross and I know that in the next few days my mucus will get worse and I will be calling for antibiotics or it will suddenly clear up and I will be able to move on with life. Sigh! I have so much going on this upcoming week that I am really hoping my poor body can pull through this one.
Saturday, May 20, 2017
CF Awareness Blog- Free Day
For free topic day I am going to give an update on my health lately. This winter has been so rough on my poor body! It started at Christmas when I got a bladder infection and soon after contracted noro-virus. Prior to that I was doing really well and staying very healthy. It seems that when I get hit by something really bad (oh you know throwing up non-stop) my immune system takes a huge hit and seems to disappear. I also lost weight because I couldn't keep food down for so many days and I think the weight loss really hit my immune system as well.
So the past several months have consisted of one cold after another, bleeding into one another so that I can hardly remember what it feels like to feel well! I was sick the whole first week of May and now I am sick again! That's less than two weeks! And we all know a CFer doesn't just get a cold and bounce back to 100% so I feel like I haven't been 100% in months now. Thankfully, my lung function has been holding steady and I don't even have words for how grateful I am for my lung stability. This winter could have been so much worse if my lungs weren't holding strong.
I am so very sick and tired of being sick and tired. I thought by May I would be over this horrific cycle of sickness, but it seems the viruses are still circulating in full force. I just want ONE month of no cold, no cough, and actually having a voice (I lose my voice every time I get a cold) and I just want to have energy again! Hurry up, summer!! With the end of the school year wrapping up (which means I will be at preschool most days now until the end of the year) and an upcoming wedding and a visit to a best friend I just can't afford to be sick anymore. I also wonder if all these activities will make me sick AGAIN! Ugh, despite taking all my vitamins and supplements and finally eating fresh fruit (boysenberries, blueberries and strawberries) from my garden I just can't get back in my healthy groove!
Thursday, April 13, 2017
Snap Crackle Pop
I made it through almost the entire preschool year and through the whole holiday season without getting CF sick. April came along and somehow I caught a cold that went to my lungs. I was so close to making it to spring. Oh well, such is life with CF. I haven't been CF sick since summer which is pretty amazing and so I really can't complain.
There are a lot of aspects of being CF sick that are annoying, but the snap crackle pop sound coming from my lungs all day and night is driving me insane! Does it drive anyone else crazy? Like I can't sleep because the buzzing and whooshing and crackling coming from inside my body is so noisy I can't block it out. I feel like no matter how often my husband uses the precursor on my back or how often I vest or how many times I huff cough I have a constant symphony going on in my lungs that just won't quiet down.
I am really looking forward to when this infection clears up and I have more energy, less coughing, less mucus and I feel better overall. But of all the aspects of getting well I am looking forward to the one I am looking forward to the most is the silence of my "healthy" lungs.
There are a lot of aspects of being CF sick that are annoying, but the snap crackle pop sound coming from my lungs all day and night is driving me insane! Does it drive anyone else crazy? Like I can't sleep because the buzzing and whooshing and crackling coming from inside my body is so noisy I can't block it out. I feel like no matter how often my husband uses the precursor on my back or how often I vest or how many times I huff cough I have a constant symphony going on in my lungs that just won't quiet down.
I am really looking forward to when this infection clears up and I have more energy, less coughing, less mucus and I feel better overall. But of all the aspects of getting well I am looking forward to the one I am looking forward to the most is the silence of my "healthy" lungs.
Friday, November 18, 2016
IV Party Tricks
I meant to write this a long time ago, but obviously didn't so here is goes several months later:
I joined a neighborhood book club almost a year ago. At the time I was still in the process of getting to know the ladies in the book club as we only meet once a month and I had only been to a few meetings. When I arrived at the home of a fellow book club member I joined two other ladies at the kitchen table where everyone was chatting and eating appetizers. As we were waiting for the rest of the ladies to arrive we were all talking, but it was clear the hostess could not focus on the conversation and something was distracting her. Her eyes kept darting around the room and she kept standing up as if to go somewhere, but would seem confused and would quickly sit back down. She finally stood up and said, "I am sorry, but I can't figure out what that noise is!" We all fell silent for a second when the other guest confessed she had heard it earlier and thought the noise was just kids playing outside. The hostess seemed to accept this theory and sat down again. As more people arrived the hostess brought up the noise again. I was embarrassed because I could not for the life of me hear this noise she was talking about. I started to wonder if some of my previous IV meds had damaged my hearing. Everyone else, however, could hear this strange noise that some compared to the "sound of a dying battery in a kid's toy" as another chimed in that it sounded like an "electric drill." As the conversation continued I felt more and more uncomfortable. How could I not hear this noise that clearly was distracting to so many others?
Finally, we moved on from the mystery noise and continued on with chatting and snacking. At one point the room fell silent momentarily and as the chatter died down I finally heard the noise that perplexed everyone else. I could feel the blood drain from my face at the exact moment that I realized this unexplained noise was coming from me! I had to sheepishly confess to knowing the source of the mystery noise. The room fell silent and everyone shifted their focus to me. I pulled open my purse and pulled out my CADD pump which made a strange drilling noise each time it dispensed my zosyn which happens about every 90 seconds! I admitted that after hearing my pump go off every few seconds 24 hours a day for 14 days at the point of the party, that my brain had no longer registered the noise in order to keep my sanity.
Needless to say my book club now knows all about my CF and how annoying a CADD pump can be!
I joined a neighborhood book club almost a year ago. At the time I was still in the process of getting to know the ladies in the book club as we only meet once a month and I had only been to a few meetings. When I arrived at the home of a fellow book club member I joined two other ladies at the kitchen table where everyone was chatting and eating appetizers. As we were waiting for the rest of the ladies to arrive we were all talking, but it was clear the hostess could not focus on the conversation and something was distracting her. Her eyes kept darting around the room and she kept standing up as if to go somewhere, but would seem confused and would quickly sit back down. She finally stood up and said, "I am sorry, but I can't figure out what that noise is!" We all fell silent for a second when the other guest confessed she had heard it earlier and thought the noise was just kids playing outside. The hostess seemed to accept this theory and sat down again. As more people arrived the hostess brought up the noise again. I was embarrassed because I could not for the life of me hear this noise she was talking about. I started to wonder if some of my previous IV meds had damaged my hearing. Everyone else, however, could hear this strange noise that some compared to the "sound of a dying battery in a kid's toy" as another chimed in that it sounded like an "electric drill." As the conversation continued I felt more and more uncomfortable. How could I not hear this noise that clearly was distracting to so many others?
Finally, we moved on from the mystery noise and continued on with chatting and snacking. At one point the room fell silent momentarily and as the chatter died down I finally heard the noise that perplexed everyone else. I could feel the blood drain from my face at the exact moment that I realized this unexplained noise was coming from me! I had to sheepishly confess to knowing the source of the mystery noise. The room fell silent and everyone shifted their focus to me. I pulled open my purse and pulled out my CADD pump which made a strange drilling noise each time it dispensed my zosyn which happens about every 90 seconds! I admitted that after hearing my pump go off every few seconds 24 hours a day for 14 days at the point of the party, that my brain had no longer registered the noise in order to keep my sanity.
Needless to say my book club now knows all about my CF and how annoying a CADD pump can be!
Saturday, October 15, 2016
The Hospital Made Me Lazy
Unlike many people, those with CF do not have the luxury of calling into work and sleeping off an illness. Our illness can't be cured with a few days in bed and extra rest. For me, sickness seems to linger for at least a few weeks until antibiotics kick in and even then I still have another week or two of clearing out extra mucus, recovering from side effects and regaining my regular energy levels. If I were to sleep off my sickness I wouldn't leave my bed for a month! Not to mention all that inactivity would mean my mucus would pool at the bottom of my lungs making it virtually impossible to clear out. So like most people with CF, I do what I can to power through. We can't ignore dishes, and laundry, and cooking meals for a month and so through fevers and violent coughing we find a way to keep life from falling apart.
That is unless we are in the hospital.
Hospital stays, as horrendous as they can be, mean no laundry or cooking or much of anything outside of treatments and interrupted sleep. And somehow as much as I despise the hospital when I start to get sick I crave the lazy days the hospital provides. Let's be real, when sickness finds its way into my home all I want to do is lay on the couch and watch TV while someone brings me food and water on demand, doesn't everyone? And if it isn't already obvious I just want to say, I have no desire to be in the hospital (ever), I just want the lazy perks that come with a hospital stay. I guess I want my cake and I want to eat it too! Sure, most people don't want to do chores while sick, but going to the hospital more often these past few years has started to train my mind that sickness = laying in bed all day reading and watching TV.
Unfortunately, my four year old can't cook and I despise the hospital so I guess for now I need to learn to be productive through sickness and push those lazy desires aside.
*I am currently not sick, but we just got through our first school year colds. The cold made me realize how much I now crave being lazy while sick compared to the past*
That is unless we are in the hospital.
Hospital stays, as horrendous as they can be, mean no laundry or cooking or much of anything outside of treatments and interrupted sleep. And somehow as much as I despise the hospital when I start to get sick I crave the lazy days the hospital provides. Let's be real, when sickness finds its way into my home all I want to do is lay on the couch and watch TV while someone brings me food and water on demand, doesn't everyone? And if it isn't already obvious I just want to say, I have no desire to be in the hospital (ever), I just want the lazy perks that come with a hospital stay. I guess I want my cake and I want to eat it too! Sure, most people don't want to do chores while sick, but going to the hospital more often these past few years has started to train my mind that sickness = laying in bed all day reading and watching TV.
Unfortunately, my four year old can't cook and I despise the hospital so I guess for now I need to learn to be productive through sickness and push those lazy desires aside.
*I am currently not sick, but we just got through our first school year colds. The cold made me realize how much I now crave being lazy while sick compared to the past*
Saturday, August 27, 2016
Mysterious Exacerbation
For my own record keeping and to potentially help others
that may find themselves in the same situation (even if it is just for the
comfort in knowing others go through long bouts of struggle with CF too) I
really wanted to be better about keeping this last (exhausting) exacerbation
well documented. However, living with the complications of CF everyday can be
mentally and physically exhausting and despite finding this blog as a way to
release some of the frustration and thoughts that surround CF I often find that
while I am in the thick of sickness taking up mental space to write about it
can feel like too much. And so this is a quick breakdown of this last
complicated exacerbation, which I might add, is not over.
July 5th: Called to ask for stronger meds as
Cipro wasn’t enough to make me feel better.
July 13th: Started IV Zosyn in hopes of it doing
the trick.
July 18th: After 2 weeks of orals and one week of
Zosyn my FEV1 dropped to 28%. Decided on doing 3 weeks of Zosyn total to hopefully kill off more pseudomonas.
July 25th: Feeling better although not great, but
my skin started to react to my port dressing. Started Prednisone to contain my severe contact dermatitis due to all adhesives.
July 6th: Went to the ER with a suspected clot. No clot was found!
August 1st: Felt like death (virus? Cold?) and
blew 31% in clinic. Decided that pseudo wasn’t the culprit to my sickness (it is sensitive to both Cipro and Zosyn) and tried
treating other bugs that may not show up on my culture.
August 3rd: Had an allergic reaction to Zosyn and
woke up covered in hives.
August 12th: Started Bactrum and Rifampin for 10
days. No progress
August 27th: Started Levoquin and Minocycline and am currently crossing my fingers this cocktail works.
Monday, August 15, 2016
Goodbye Spots, Hello Fevers
*warning: TMI info about sinus issues below*
After 8 days my hives officially disappeared! In true CF fashion I guess I picked up a virus because I started getting tons of sinus drainage, a very congested wet cough, and the feeling of drowning came back. The constant Benadryl may have had something to with the sinus issues because it can dry out secretions. I had almost constant hard sinus crud " draining" (more like tumbling in slow motion and frequently getting stuck) down the back of my sinuses. It was bad! The kind you can feel wedged in your sinus and can smell the bacteria before it dislodged (tmi, I know).
And then the fevers started. I already had meds at home that I was supposed to start right after IVs because Zosyn didn't work. However, I had to wait for my allergic reaction to Zosyn to wear off before starting new meds. I am so relieved that the hives are finally gone so that I can start taking my new med combo. I am so hoping that these meds work because we are approaching two months of dealing with this exacerbation that just doesn't want to leave. I feel like I lost the bulk if my summer to being sick or trying to recover. Our family loves summer because we love hiking and going to local lakes and rivers, but this year my health has kept us home and I can feel summer already slipping into fall. Mainly, I am just ready to have a clinic appointment that actually goes well (or at least decent) especially as we approach the winter season.
After 8 days my hives officially disappeared! In true CF fashion I guess I picked up a virus because I started getting tons of sinus drainage, a very congested wet cough, and the feeling of drowning came back. The constant Benadryl may have had something to with the sinus issues because it can dry out secretions. I had almost constant hard sinus crud " draining" (more like tumbling in slow motion and frequently getting stuck) down the back of my sinuses. It was bad! The kind you can feel wedged in your sinus and can smell the bacteria before it dislodged (tmi, I know).
And then the fevers started. I already had meds at home that I was supposed to start right after IVs because Zosyn didn't work. However, I had to wait for my allergic reaction to Zosyn to wear off before starting new meds. I am so relieved that the hives are finally gone so that I can start taking my new med combo. I am so hoping that these meds work because we are approaching two months of dealing with this exacerbation that just doesn't want to leave. I feel like I lost the bulk if my summer to being sick or trying to recover. Our family loves summer because we love hiking and going to local lakes and rivers, but this year my health has kept us home and I can feel summer already slipping into fall. Mainly, I am just ready to have a clinic appointment that actually goes well (or at least decent) especially as we approach the winter season.
Monday, February 15, 2016
Drought
I remember tucking Kaylee, when she was still a chubby baby, into her stroller on a particularly rainy day several years ago. We wanted to take advantage of the sun between the cycles of rainfall to get a quick walk and a break from the four walls that made up my living room. She was mesmerized by the world around her glistening from being bathed in raindrops, making the mundane and familiar walk seem mysterious and wondrous.
That very same earth soaked walk I took with Kaylee so many years ago was one of the last walks I would take before my health plummeted and my world was forever changed. I had achieved my biggest dream and felt as if life in that rain soaked afternoon had been almost too good to me and gave me more than I deserved. I had no idea how quickly things could change.
The following year, the smell of the earth freshly cleansed by raindrops seemed to be a distant memory, just as that toothless, chubby cheeked baby smile seemed as if it were a muddled long ago dream. We were in the midst of a drought and the sun bathed winter days seemed odd and out of place. As the months and then the year passed there was murmurs of worry. These murmurs turned into loud voices, limiting household water usage. Those voices turned stern as people were told to let their lawns turn brown, throwing around slogans that "gold" was the new green. And soon those voices were thunderous and forests and towns all around the state were going up in flames, destroying all living things in its wake. And we waited and hoped. We helplessly waited for the clouds to roll in and the sky to turn dark and wash away the drought that plagued us for years.
My health tumbled quickly after contracting the flu, and although I was worried I knew that the next set of IVs, the next round of oral, the next month would bring better health. My murmurs of fear that my illness was intent on killing me turned louder as months passed and my health had not returned. My fear became louder as yet another round of IVs made no difference in my health, which was something that seemed foreign to me prior to contracting the flu. As the years passed and my health plummeted lower and lower despite IVs and hospitals and steroids my fear became so fierce it often clouded my mind. I wrote a letter to my family on the wishes I had for my daughter as she grew older, most likely without me. My belief in a future with my family grew dim.
And then there was a glimmer of hope. The news kept announcing that El Nino was coming, which has something to do with abnormal ocean temperatures which meant the only thing we so desperately needed, rain! There were days we went outside and were reminded of the familiar smell of the sky on the cusp of rainfall. There were swollen dark clouds that rolled in heavy with raindrops waiting to tumble to our dry and cracked land. And soon the lakes and rivers started to fill, the land turned green and lush like it was always meant to be.
Around this same time there was a glimmer of hope for me as well. I made it two months without getting sick. Two months turned into three. My port went unused and I didn't see the hospital walls 8 whole months. I started to lose the paranoia of germs and sickness and death that so often haunted the deepest darkest corners of my mind. I started to think that maybe I would live long enough for my daughter to have memories of my existence outside of pictures and stories told by family members.
We are still in need of rain to fill our reservoirs and snow pack in the mountains. We are still restricted on our water usage and we know that we are teetering between being okay and not having nearly enough water to sustain our land and our people's need for water. And yet, we got a small reprieve from the four rainless years and the fear of running out of water has quieted even if just a little.
My health will never be the same as it was so many years ago. So much of my lungs are now damaged and scarred, damage that will never be healed. I still find myself gasping after carrying a heavy basket of laundry or bending over too long. I get short of breath from gardening and seemingly simple tasks which can be frustrating and saddening at the same time. And yet, I am so far from the place I used to be. I no longer wonder when I go to bed at night if I will be able to crawl out of bed in the morning. I no longer fear the grocery store because pushing a cart is something I am once again confident I can do. I no longer need a nap after even the most mundane outing. I have a life again. I know I am always one bad bug away from not being okay, but for now, I am thankful for my small reprieve from the all consuming sickness that plagued me for so many years.
That very same earth soaked walk I took with Kaylee so many years ago was one of the last walks I would take before my health plummeted and my world was forever changed. I had achieved my biggest dream and felt as if life in that rain soaked afternoon had been almost too good to me and gave me more than I deserved. I had no idea how quickly things could change.
The following year, the smell of the earth freshly cleansed by raindrops seemed to be a distant memory, just as that toothless, chubby cheeked baby smile seemed as if it were a muddled long ago dream. We were in the midst of a drought and the sun bathed winter days seemed odd and out of place. As the months and then the year passed there was murmurs of worry. These murmurs turned into loud voices, limiting household water usage. Those voices turned stern as people were told to let their lawns turn brown, throwing around slogans that "gold" was the new green. And soon those voices were thunderous and forests and towns all around the state were going up in flames, destroying all living things in its wake. And we waited and hoped. We helplessly waited for the clouds to roll in and the sky to turn dark and wash away the drought that plagued us for years.
My health tumbled quickly after contracting the flu, and although I was worried I knew that the next set of IVs, the next round of oral, the next month would bring better health. My murmurs of fear that my illness was intent on killing me turned louder as months passed and my health had not returned. My fear became louder as yet another round of IVs made no difference in my health, which was something that seemed foreign to me prior to contracting the flu. As the years passed and my health plummeted lower and lower despite IVs and hospitals and steroids my fear became so fierce it often clouded my mind. I wrote a letter to my family on the wishes I had for my daughter as she grew older, most likely without me. My belief in a future with my family grew dim.
And then there was a glimmer of hope. The news kept announcing that El Nino was coming, which has something to do with abnormal ocean temperatures which meant the only thing we so desperately needed, rain! There were days we went outside and were reminded of the familiar smell of the sky on the cusp of rainfall. There were swollen dark clouds that rolled in heavy with raindrops waiting to tumble to our dry and cracked land. And soon the lakes and rivers started to fill, the land turned green and lush like it was always meant to be.
Around this same time there was a glimmer of hope for me as well. I made it two months without getting sick. Two months turned into three. My port went unused and I didn't see the hospital walls 8 whole months. I started to lose the paranoia of germs and sickness and death that so often haunted the deepest darkest corners of my mind. I started to think that maybe I would live long enough for my daughter to have memories of my existence outside of pictures and stories told by family members.
We are still in need of rain to fill our reservoirs and snow pack in the mountains. We are still restricted on our water usage and we know that we are teetering between being okay and not having nearly enough water to sustain our land and our people's need for water. And yet, we got a small reprieve from the four rainless years and the fear of running out of water has quieted even if just a little.
My health will never be the same as it was so many years ago. So much of my lungs are now damaged and scarred, damage that will never be healed. I still find myself gasping after carrying a heavy basket of laundry or bending over too long. I get short of breath from gardening and seemingly simple tasks which can be frustrating and saddening at the same time. And yet, I am so far from the place I used to be. I no longer wonder when I go to bed at night if I will be able to crawl out of bed in the morning. I no longer fear the grocery store because pushing a cart is something I am once again confident I can do. I no longer need a nap after even the most mundane outing. I have a life again. I know I am always one bad bug away from not being okay, but for now, I am thankful for my small reprieve from the all consuming sickness that plagued me for so many years.
Sunday, December 28, 2014
Change
The last few months I wasn't able to blog much due to a rather ancient computer that tired out and left me hanging high and dry. I am back online and hopefully this computer will stick around for a while. This past year seems to have been a blur of sickness, meds, and doctor appointments. As the new year approaches I can't help, but silently hope and wish for a healthier more stable 2015. And yet, in the back of my mind I hear the words I spoke at the end of 2013, that I hoped for a healthier and more stable 2014. I have been thinking a lot, often while sitting in the doctor's waiting room, about my health and the lack of control I have over everything. How despite being compliant and aggressive with treatments my health seems to yo-yo in ways I never imagined possible.
In recent months I have seen gains I only dreamed of in the height of sickness last April and yet just as quickly as those gains come, they seem to disappear and my health tumbles to new lows. This taste of healthier days, filled with more energy, more endurance, the ability to exercise tease and taunt my very soul, "Look how wonderful it is to be able to jog on the treadmill and feel your legs tire below you and how amazing it feels to gulp that oxygen into your open lungs. Feel how liberating it is to walk all afternoon without that all too familiar feeling of drowning. Notice what it feels like to be everybody else. Now just wait, because tomorrow you will open your eyes and for no reason your lungs will burn, your breath will be shallow, you will struggle to walk to the bathroom and you will question your sanity that this amazing day with a chest full of healing oxygen and a body that seemed to function just as it should even existed."
This has replayed over and over the past several months. Making me crazy with anticipation for when my health would return and fearful of every minute that passed that I felt well knowing all too well it would disappear with a blink of an eye.
And so I am learning to be grateful despite the endless sickness, the tiredness I can't shake and the infections looming around the corner. I need to learn to be grateful or go crazy with the instability, lack of control, and constant fear. I am adjusting my expectations and learning to enjoy the good even if there seems to be so much more bad. The days I find my breath shallow and labored I remind myself to be thankful that the fevers have stayed away for weeks. On the days I can exercise well I try not to think what tomorrow will bring and enjoy that I was able to exercise at all. I try not to look into the future, but rather stay in the moment because a good morning does not guarantee a good afternoon and a healthy few days does not mean that this disease is backing off.
The chronic, never ending feeling this disease brings can be exhausting. Thinking of my future, the slow decline, what my life will be like at 35 or 40 can feel overwhelming. I can't even begin to picture myself 15 years from now. And so for now I will take it day by day, moment by moment. I would love to wish for a healthier 2015, but instead I will hope for a better perspective, a healthier outlook on life. I will always hope for healing and stability, but knowing CF is chronic and ultimately fatal I will not hold too tightly to that hope. Instead I hope to enjoy each day that comes and find the good in every day regardless of my state of health. So much of our lives are so completely out of our control and often the only aspect we can control is our attitude. So my lung function may or may not be higher in 2015, my lungs may or may not struggle to breath more often than not in 2015, and my bacteria may or may not continue to win over precious real estate in my lungs, but I do know that I will enjoy 2015, CF be damned!
In recent months I have seen gains I only dreamed of in the height of sickness last April and yet just as quickly as those gains come, they seem to disappear and my health tumbles to new lows. This taste of healthier days, filled with more energy, more endurance, the ability to exercise tease and taunt my very soul, "Look how wonderful it is to be able to jog on the treadmill and feel your legs tire below you and how amazing it feels to gulp that oxygen into your open lungs. Feel how liberating it is to walk all afternoon without that all too familiar feeling of drowning. Notice what it feels like to be everybody else. Now just wait, because tomorrow you will open your eyes and for no reason your lungs will burn, your breath will be shallow, you will struggle to walk to the bathroom and you will question your sanity that this amazing day with a chest full of healing oxygen and a body that seemed to function just as it should even existed."
This has replayed over and over the past several months. Making me crazy with anticipation for when my health would return and fearful of every minute that passed that I felt well knowing all too well it would disappear with a blink of an eye.
And so I am learning to be grateful despite the endless sickness, the tiredness I can't shake and the infections looming around the corner. I need to learn to be grateful or go crazy with the instability, lack of control, and constant fear. I am adjusting my expectations and learning to enjoy the good even if there seems to be so much more bad. The days I find my breath shallow and labored I remind myself to be thankful that the fevers have stayed away for weeks. On the days I can exercise well I try not to think what tomorrow will bring and enjoy that I was able to exercise at all. I try not to look into the future, but rather stay in the moment because a good morning does not guarantee a good afternoon and a healthy few days does not mean that this disease is backing off.
The chronic, never ending feeling this disease brings can be exhausting. Thinking of my future, the slow decline, what my life will be like at 35 or 40 can feel overwhelming. I can't even begin to picture myself 15 years from now. And so for now I will take it day by day, moment by moment. I would love to wish for a healthier 2015, but instead I will hope for a better perspective, a healthier outlook on life. I will always hope for healing and stability, but knowing CF is chronic and ultimately fatal I will not hold too tightly to that hope. Instead I hope to enjoy each day that comes and find the good in every day regardless of my state of health. So much of our lives are so completely out of our control and often the only aspect we can control is our attitude. So my lung function may or may not be higher in 2015, my lungs may or may not struggle to breath more often than not in 2015, and my bacteria may or may not continue to win over precious real estate in my lungs, but I do know that I will enjoy 2015, CF be damned!
Monday, June 9, 2014
What It Means To Be Different
The other day I was sitting with a good friend of mine chatting while sipping coffee (hers was decaf- she is trying for baby number 2). We have been friends for years and we used to be so similar, we were always in the same stages of life. We went to college together and spent countless hours studying side by side, got married less than a year apart and shared and planned every little wedding detail together, had our babies 3 months apart and took yoga together, went to the same midwife, and eventually breastfed, burped, and soothed our babies in each other's homes. But somewhere along the line my life stalled out and hers continued forward, I got left behind. I are no longer on the same page. I am not sure I belong in the same book anymore.
You see, when we get together she chats about what most 30-something year olds chat about, things I should easily relate to. She talked about how excited she was that they are trying for baby number two. How she wants a large family- 3 or 4 total. She want a house full of kids!
I kept thinking how I will never be healthy enough to have another baby. My husband and I don't have the luxury to discuss how many kids we want because CF took that choice from us.
She was chatting about how she found the perfect school to send her son to. One that does amazing enrichment programs and has a great student teacher ratio.
I kept wondering if I would live long enough to see Kaylee go to kindergarten. With my lung function so low and the fear of sickness lurking around every corner. I wonder how much longer i will be around to raise my precious little girl. Please, oh please, let me see her go to kindergarten. I want to at least live long enough for her to have memories of me.
She was talking about how her and hubby want to take a little vacation in the mountains, you know to get away from it all.
I was thinking about how my husband absolutely loves going to the mountains, but how I could barely breath in the high altitude when my lung function was in the 50s. I can't fathom the struggle with 30%. My husband's favorite vacation spot is a place we can't go anymore. Maybe after I die he can go with his new wife...
She was talking about how she was a crazy teenager and that as hard as raising a toddler is that raising a teenager will be 1000x harder.
I kept silently praying that I can know what Kaylee will look like as a teenager. I want to know if her hair stays curly, if her eyes shine just as bright. Will she be smart and studious, athletic, artist? What will her friends be like? What class will she hate? Which will she love? Oh. I don't care if she makes me drop her off at the end of the street because she is humiliated to be seen in the car with her mom, I just so desperately want to know if that dimple in her left cheek will still be there when turns 16.
I agree and nod and say all the things I am supposed to say. But I don't understand her world- your world. It is not the same that I live in. I do not speak of my horrid reality, it is one you do not wish to know. Nobody wishes to see the world I live in and so I live in it by myself. I think these thoughts, but they will never escape from my lips. Your world has you too preoccupied with the wonderful possibilities your youth gives you, of the vast and open life that lays ahead. My world is rapidly collapsing on me and I won't be so wretched as to invite you in. Nobody deserves to be here.
For now, I will pretend. Pretend to understand the excitement of being young and free. I will pretend to understand what it feels like to know your life has just started rather than wondering how rapidly it will end. I will pretend my life is like yours when in reality I know nothing of the life you live and in reality you know nothing of mine.
You see, when we get together she chats about what most 30-something year olds chat about, things I should easily relate to. She talked about how excited she was that they are trying for baby number two. How she wants a large family- 3 or 4 total. She want a house full of kids!
I kept thinking how I will never be healthy enough to have another baby. My husband and I don't have the luxury to discuss how many kids we want because CF took that choice from us.
She was chatting about how she found the perfect school to send her son to. One that does amazing enrichment programs and has a great student teacher ratio.
I kept wondering if I would live long enough to see Kaylee go to kindergarten. With my lung function so low and the fear of sickness lurking around every corner. I wonder how much longer i will be around to raise my precious little girl. Please, oh please, let me see her go to kindergarten. I want to at least live long enough for her to have memories of me.
She was talking about how her and hubby want to take a little vacation in the mountains, you know to get away from it all.
I was thinking about how my husband absolutely loves going to the mountains, but how I could barely breath in the high altitude when my lung function was in the 50s. I can't fathom the struggle with 30%. My husband's favorite vacation spot is a place we can't go anymore. Maybe after I die he can go with his new wife...
She was talking about how she was a crazy teenager and that as hard as raising a toddler is that raising a teenager will be 1000x harder.
I kept silently praying that I can know what Kaylee will look like as a teenager. I want to know if her hair stays curly, if her eyes shine just as bright. Will she be smart and studious, athletic, artist? What will her friends be like? What class will she hate? Which will she love? Oh. I don't care if she makes me drop her off at the end of the street because she is humiliated to be seen in the car with her mom, I just so desperately want to know if that dimple in her left cheek will still be there when turns 16.
I agree and nod and say all the things I am supposed to say. But I don't understand her world- your world. It is not the same that I live in. I do not speak of my horrid reality, it is one you do not wish to know. Nobody wishes to see the world I live in and so I live in it by myself. I think these thoughts, but they will never escape from my lips. Your world has you too preoccupied with the wonderful possibilities your youth gives you, of the vast and open life that lays ahead. My world is rapidly collapsing on me and I won't be so wretched as to invite you in. Nobody deserves to be here.
For now, I will pretend. Pretend to understand the excitement of being young and free. I will pretend to understand what it feels like to know your life has just started rather than wondering how rapidly it will end. I will pretend my life is like yours when in reality I know nothing of the life you live and in reality you know nothing of mine.
Monday, June 2, 2014
What Is This?
What is this? I had a good Dr appointment for the first time in what feels like forever?? Why yes, yes I did! So my appointment may not have been very good according to most peoples standards, but what can I say? My standards suck. So I am overjoyed to say that I am officially back in the 30s! I am hoping not to see my FEV1 in the 20s for well...forever, but that is probably asking too much so I will settle for 20 years or so. My numbers were barely hanging onto the 30s at 33%, but you know what? 33% is better than 32% and way better than anything in the 20s so I am not going to complain. I am hoping that my numbers will continue to creep up over the next year or so. I go back to the doctor in 6 weeks and my goal is 35%. Baby steps...
And guess what else? My weight, it rocked! Thank you, Megace! We decided I would stay on Megace until I hit 130lbs which will be interesting because besides being pregnant I have never really been heavier than 125. I may need to buy a new wardrobe!
Other good news (yes it just kept coming!!) Vit A, E, K, and D were all good. A1C was awesome! I was totally on a role...well besides the shitty lung function and all. Thanks to my appointment today I am in a pretty good mood tonight so excuse me while I celebrate with a double helping of Ensure Plus with a few tablespoons of coconut oil and 5 zenpep!
And guess what else? My weight, it rocked! Thank you, Megace! We decided I would stay on Megace until I hit 130lbs which will be interesting because besides being pregnant I have never really been heavier than 125. I may need to buy a new wardrobe!
Other good news (yes it just kept coming!!) Vit A, E, K, and D were all good. A1C was awesome! I was totally on a role...well besides the shitty lung function and all. Thanks to my appointment today I am in a pretty good mood tonight so excuse me while I celebrate with a double helping of Ensure Plus with a few tablespoons of coconut oil and 5 zenpep!
Saturday, May 24, 2014
The Right Direction?
I am not superstitious, I really am not. And yet, I feel nervous writing this in case I jinx myself. In case, by writing these words for others to read it will make me unworthy of what is happening and everything will vanish as mysteriously as it came. But as much as I am currently doubting it, I am in fact, not superstitious so here it goes.
There has been a shift. A subtle shift. It is not that my breathing is necessarily any easier and I am not sure if my lung function increased at all, but there seems to be a difference in the way I feel each day. I am noticing I am doing so much more throughout the day and not feeling like I want to fall into bed long before my daughter is tucked into bed.
I can function like a human being again. I can make it through more than one outing without feeling like all of my energy is completely drained. I feel like I am slowly crawling away from deaths door, because really I was hardly living a life anymore. Not that I was deathly ill all the time, but it seemed that when I was "better" I wasn't my old self and it would only last a week at most before I felt horrific, completely useless.
Today for example, I ended up taking a nap for about 40 minutes. However, this nap allowed me to have enough energy to work in the garden, make homemade pesto and homemade ice tea (using herbs from our garden for both), and homemade mounds bars for dessert. I then did the dishes, washed the windows, vacuumed the whole house, wrote this blog and did my nails. And you know what? I am still standing and don't feel exhausted yet. A month ago, I would need a nap and still not be feeling well enough to do much all day besides caring for my little one.
I am also realizing why I may have been so sick. I feel like we, the doctors and I, were baffled at why I couldn't get better. I think there were some obvious issues like my immune system and body still recovering from the flu which resulted in continuous colds and illness. My body was repeatedly getting knocked down. However, I am almost positive I had an infection deep in a pocket of my lungs where mucus is completely trapped. The fevers were an obvious sign of infection, but oddly enough my mucus was thin and light in color so I never felt like I actually had a respiratory infection. I would feel better after abx (although my mucus already looked "good" so it never seemed to change much), but I would seem to fall sick again almost immediately with a cold that would result in a fever. I think I wasn't being treated long enough for how bad the hidden infection was, but since I had none of my usual obvious signs of respiratory infection we never thought to keep extending the abx. My increased airway clearance and nebs weren't touching the area of my lungs that were infected so they weren't making a difference.
This last appointment, I asked to stay on my meds (Levaqui and Bactrim) for 3 weeks instead of my usual two since it seemed that I would just start to feel "better" when my meds would end. I also started to worry about the lung pain I kept feeling on my left side which seemed to be a sign of infection. I think the 3 weeks of antibiotics plus the added weight gain is what may have finally given my body a fighting chance.
Like I said, I can tell my lungs aren't even close to where they used to be and I know it will be a long road ahead, but at least for now I feel like I can live my life the way I am supposed to with my amazing little girl and my wonderful husband. I can enjoy the daily aspects of life again and what could be better than that!
There has been a shift. A subtle shift. It is not that my breathing is necessarily any easier and I am not sure if my lung function increased at all, but there seems to be a difference in the way I feel each day. I am noticing I am doing so much more throughout the day and not feeling like I want to fall into bed long before my daughter is tucked into bed.
I can function like a human being again. I can make it through more than one outing without feeling like all of my energy is completely drained. I feel like I am slowly crawling away from deaths door, because really I was hardly living a life anymore. Not that I was deathly ill all the time, but it seemed that when I was "better" I wasn't my old self and it would only last a week at most before I felt horrific, completely useless.
Today for example, I ended up taking a nap for about 40 minutes. However, this nap allowed me to have enough energy to work in the garden, make homemade pesto and homemade ice tea (using herbs from our garden for both), and homemade mounds bars for dessert. I then did the dishes, washed the windows, vacuumed the whole house, wrote this blog and did my nails. And you know what? I am still standing and don't feel exhausted yet. A month ago, I would need a nap and still not be feeling well enough to do much all day besides caring for my little one.
I am also realizing why I may have been so sick. I feel like we, the doctors and I, were baffled at why I couldn't get better. I think there were some obvious issues like my immune system and body still recovering from the flu which resulted in continuous colds and illness. My body was repeatedly getting knocked down. However, I am almost positive I had an infection deep in a pocket of my lungs where mucus is completely trapped. The fevers were an obvious sign of infection, but oddly enough my mucus was thin and light in color so I never felt like I actually had a respiratory infection. I would feel better after abx (although my mucus already looked "good" so it never seemed to change much), but I would seem to fall sick again almost immediately with a cold that would result in a fever. I think I wasn't being treated long enough for how bad the hidden infection was, but since I had none of my usual obvious signs of respiratory infection we never thought to keep extending the abx. My increased airway clearance and nebs weren't touching the area of my lungs that were infected so they weren't making a difference.
This last appointment, I asked to stay on my meds (Levaqui and Bactrim) for 3 weeks instead of my usual two since it seemed that I would just start to feel "better" when my meds would end. I also started to worry about the lung pain I kept feeling on my left side which seemed to be a sign of infection. I think the 3 weeks of antibiotics plus the added weight gain is what may have finally given my body a fighting chance.
Like I said, I can tell my lungs aren't even close to where they used to be and I know it will be a long road ahead, but at least for now I feel like I can live my life the way I am supposed to with my amazing little girl and my wonderful husband. I can enjoy the daily aspects of life again and what could be better than that!
Thursday, January 9, 2014
Flu Phobia
At the risk of sounding like a paranoid psycho I am terrified of getting the flu this year. Last February, 11 months ago, I caught the flu for the first time. I was so sick I couldn't function (getting from the bed to bathroom was a huge feat) for over 2 weeks. I was sick, but somewhat functioning with help for several weeks after that. I was extremely fatigued and unable to preform normal duties because of this fatigue for months. It took me about 9 months to recover and at 11 months out I still feel like, although recovered, I am forever weakened health wise by the experience. I don't bounce back from colds like I did before, I get run down much easier and I just don't feel the same.
I recently bought clorox wipes for grocery carts, baskets, or other places that sick people may have touched. I always feel slightly embarrassed taking out my wipes and sanitizing everything because I am not normally a germaphobe, but avoiding the flu is worth the moments of embarrassment. I wear my gloves when I go to the ATM or other public places so I can pull my gloves off after touching everything (germs!) and throw them aside. Hand sanitizer is my new best friend. I no longer worry about hurting feelings if a kid at the park or library is coughing near my daughter I instantly pick her up and move.
On the radio last night I heard there have already been 5 deaths from the flu in the city I live in. Obviously, that did not ease my fears of getting the dreaded flu. I know I need to live life and can't just barricade myself in the house, but I am not going to lie- there are times I wish I could (and not go completely crazy from boredom).
Any tips on avoiding the flu through the winter months?
I recently bought clorox wipes for grocery carts, baskets, or other places that sick people may have touched. I always feel slightly embarrassed taking out my wipes and sanitizing everything because I am not normally a germaphobe, but avoiding the flu is worth the moments of embarrassment. I wear my gloves when I go to the ATM or other public places so I can pull my gloves off after touching everything (germs!) and throw them aside. Hand sanitizer is my new best friend. I no longer worry about hurting feelings if a kid at the park or library is coughing near my daughter I instantly pick her up and move.
On the radio last night I heard there have already been 5 deaths from the flu in the city I live in. Obviously, that did not ease my fears of getting the dreaded flu. I know I need to live life and can't just barricade myself in the house, but I am not going to lie- there are times I wish I could (and not go completely crazy from boredom).
Any tips on avoiding the flu through the winter months?
Monday, April 15, 2013
Starting Over
I feel as if I am picking up the fragments of my life and starting over...finally. My body was broken from being so sick and so I am starting new. It is frustrating to go so far backwards, to feel as if you lost everything you gained. I feel beaten and low, but I am slowly crawling back to where I used to be. I just received a shipment of Ensure again. It feels slightly like a defeat after a year and a half including a pregnancy and breastfeeding without needing them, but here I am desperate for calories, to gain weight.
Tomorrow morning I am going to try to get into the pool again. It seems funny now how just a few months ago I was trying to increase my speed of swimming a mile in the pool because I now feel afraid to try a single lap. I need to build my endurance, my power, my lungs. I know the laps may be in slow motion with breaks between, but I need this for my health, my life, my daughter.
To lose everything you worked for in a matter of days and requiring months to rebuild it seems cruel at best, but the sickness underestimated my will to be well and I will do everything I possibly can to get back to where I once was.
Tomorrow morning I am going to try to get into the pool again. It seems funny now how just a few months ago I was trying to increase my speed of swimming a mile in the pool because I now feel afraid to try a single lap. I need to build my endurance, my power, my lungs. I know the laps may be in slow motion with breaks between, but I need this for my health, my life, my daughter.
To lose everything you worked for in a matter of days and requiring months to rebuild it seems cruel at best, but the sickness underestimated my will to be well and I will do everything I possibly can to get back to where I once was.
Thursday, April 11, 2013
Life
I have been kinda quiet lately. I recovered from the flu only to find myself knee deep in a cold a few weeks later. After recovering from my cold it was a matter of days before I was getting afternoon fevers. This has caused me to nap whenever Kaylee naps (she is down to one nap a day. Eeek!) and has left me with very little me time which means very little blogging time.
In other news I turned 29 on the third and although I don't particularly like my birthday (I know, I know, CFers are supposed to LOVE their birthday, but honestly I hate growing older with this disease), but I love the gift my wonderful brother gave me- a juicer! He has been juicing for years and I asked him to borrow his juicer to see if I can boost my vitamin levels and possible shake this sickness that keeps following me around. Well, he bought me my very own and I am happy to say I am juicing everyday and even my husband is a fan.
Okay, that is all I have for today. Rather dull, but I am in a blogging slump I guess.
In other news I turned 29 on the third and although I don't particularly like my birthday (I know, I know, CFers are supposed to LOVE their birthday, but honestly I hate growing older with this disease), but I love the gift my wonderful brother gave me- a juicer! He has been juicing for years and I asked him to borrow his juicer to see if I can boost my vitamin levels and possible shake this sickness that keeps following me around. Well, he bought me my very own and I am happy to say I am juicing everyday and even my husband is a fan.
Okay, that is all I have for today. Rather dull, but I am in a blogging slump I guess.
Wednesday, February 20, 2013
Beauty In Sickness
14 days of sickness. 14 days of fevers that left me shivering and useless in bed. 14 days of coughing until I saw little stars dancing around my eyelids. 14 days of an insatiable need for sleep. So many times during these past 14 days I have longed for them to disappear. I found myself thinking, I wish it were next week when this sickness will be behind me. When I can feel more myself than I feel now. But as I was wishing away the days my little girl was growing older. Her beautiful blonde hair was filling in almost daily, getting thicker and longer. She started sitting on her knees or squatting which I hadn't noticed before. Even her eyes seemed to be changing to a new shade of blue.
I realized that these precious days with my 8 month old, despite being filled with sickness, were fleeting and beautiful. And I have found beauty in my sickness.
There was beauty in the days I couldn't get out of bed and my husband would crack open the bedroom door letting light fill my darkened room. He would set Kaylee in the bed where she would quickly crawl to me, cold hands and feet finding their way against my skin. Her warm mouth searching for her source of nourishment. She would drink until she was drowsy and we would drift off into sleep together. There was beauty in the day that Kaylee sat completely still in my arms watching the birds dance wildly in the raindrops, her eyes fixated on their every move. There was beauty in the morning that neither of us felt like crawling out from the warm covers and she layed next to me, latched on, but not drinking looking around the room lost in thought. There was beauty when I sat in the corner of the living room unable to get up and move around the house, and my silly little girl made goofy faces and funny noises until we were both laughing.
Not everyday is perfect, in fact the last 14 have been as far from perfect as I can imagine, and yet, there is beauty in everyday. There is even beauty in sickness.
I realized that these precious days with my 8 month old, despite being filled with sickness, were fleeting and beautiful. And I have found beauty in my sickness.
There was beauty in the days I couldn't get out of bed and my husband would crack open the bedroom door letting light fill my darkened room. He would set Kaylee in the bed where she would quickly crawl to me, cold hands and feet finding their way against my skin. Her warm mouth searching for her source of nourishment. She would drink until she was drowsy and we would drift off into sleep together. There was beauty in the day that Kaylee sat completely still in my arms watching the birds dance wildly in the raindrops, her eyes fixated on their every move. There was beauty in the morning that neither of us felt like crawling out from the warm covers and she layed next to me, latched on, but not drinking looking around the room lost in thought. There was beauty when I sat in the corner of the living room unable to get up and move around the house, and my silly little girl made goofy faces and funny noises until we were both laughing.
Not everyday is perfect, in fact the last 14 have been as far from perfect as I can imagine, and yet, there is beauty in everyday. There is even beauty in sickness.
Wednesday, February 13, 2013
The Flu Has Hit Home
I think I caught death in a cold or the flu...something like that. And you know what? I don't so much mind the crazy nonstop fevers, chills, obscene amounts of mucus everywhere, the lack of energy, the lack of appetite, the fact that every muscle in my entire body is sore from coughing. Okay, I actually do mind, but it isn't nearly as bad as how much I miss being a mommy.
I miss waking before the sun and quietly sneaking out of the room as to avoid waking the hubby. I miss padding across the carpet to Kaylee's bedroom, picking out her outfit and getting her ready for the day. I miss our morning breakfast where she tells me all about her night as I prepare things for both of us to eat. I miss the way she bounces up and down in her high chair when she sees the food is ready. I love the way she chats at the breakfast table as if she knows that at mealtime that is what you are supposed to do, chat. I miss her contagious happy morning energy. I miss letting her play while i clean up breakfast. I miss that when she gets lonely she comes crawling back into the kitchen saying, "mama mama mama" until I scoop her in my arms. I miss playing on the floor with her and laughing. Oh, I miss the laughing.
Instead I am cooped up in bed, coughing, sleeping, struggling, coughing. I am listening from my half awake half asleep state to my husband getting breakfast ready, the breakfast K and I are supposed to eat together. I hear her telling him about her night, the stories she should be telling me. And I hear them laughing. I hear them laughing and I am crying. 5 days is too long away from being a mom. 5 days is 5 days too long.
I miss waking before the sun and quietly sneaking out of the room as to avoid waking the hubby. I miss padding across the carpet to Kaylee's bedroom, picking out her outfit and getting her ready for the day. I miss our morning breakfast where she tells me all about her night as I prepare things for both of us to eat. I miss the way she bounces up and down in her high chair when she sees the food is ready. I love the way she chats at the breakfast table as if she knows that at mealtime that is what you are supposed to do, chat. I miss her contagious happy morning energy. I miss letting her play while i clean up breakfast. I miss that when she gets lonely she comes crawling back into the kitchen saying, "mama mama mama" until I scoop her in my arms. I miss playing on the floor with her and laughing. Oh, I miss the laughing.
Instead I am cooped up in bed, coughing, sleeping, struggling, coughing. I am listening from my half awake half asleep state to my husband getting breakfast ready, the breakfast K and I are supposed to eat together. I hear her telling him about her night, the stories she should be telling me. And I hear them laughing. I hear them laughing and I am crying. 5 days is too long away from being a mom. 5 days is 5 days too long.
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