I don't really like to make New Year resolutions. My resolutions were always something really important like being 100% compliant with nebulizers. That's a lot of pressure when you do 10 nebulizers, 3 airway clearances and take over 50+ pills a day. If I go out of town and forget my pulmozyme, It ruins my prefect streak. While they are simple mistakes, once I mess up, I have lost that competitive streak I had and it's hard to stay on track.
So I decided this year just to examine where I am at now and take it a day at a time.
My doctor explained my lung function in a great way that emphasizes it's importance. I have at the most 65% lung function (due to permanent scarring & damage). Which, it's sad to realize at my healthiest, I'm still missing 35% (over 1/2 of a lung). But the lowest I can go is really 20% and I start preparing for a transplant at 30%, so 30% is somewhere I don't want to be EVER! So if I have between 65-25% range from best to well (worst)... where I am now (38%) is terrifying. Here is a chart to explain my lung function battle & how fast I can drop due to getting ill...
My lung function is currently sitting at 38% again, so I'm headed downward really fast. So whether that includes more IVs, hospital stays, taking me off Orkambi, I don't care. I want it back to 55% and hopefully work my way up to 60% from there. I feel like I have been struggling for over year. Up and Down. In 2012 at the beginning of the chart I was in the 30s and did go up to 55% after a full year of working out, jogging every night, and really pushing myself to the limit. However, back then it was a gradual decrease, not a sudden cliff dive like this time. Which is why my doctor was concerned with some of my CT scans. So I just have to keep at it and I have been preparing for my appointment & lung function test on Tuesday of next week. I will keep you all updated.
I'm starting to doubt and let the negative creep in. I need higher lung function to carry groceries and complete daily living, but mostly I want to be a mother. I worry I won't be able to carry my child around if I'm stuck at the level of lung function I am at now. I can't do laundry or any yard work. I can't leave the house in the winter. With Andrew working two jobs (80 hours a week) I can't expect him to take on being "bascially" a single parent on top of everything. So I need to get my health prioritized NOW!
Andrew & I have been looking into more options to become a family and that is reason enough to stay focused!
We don't want to wait years to start a family. We have been talking about since before we were even engaged how we wanted kids & how quickly we were planning on becoming a family. I'm 32 years old and in CF years.. That means I feel 52 with my arthritis & decreased lung function... some days even older...So it's a lot of stress and information to process right now. We have been hitting more obstacles and its costing more money to jump through the hoops to become parents. It has been tough to say the least. So Andrew has been dealing with the agencies, while I focus on my health. We will give you an update in the next few weeks about our Family Planning Journey.
I fully believe I can get back to 60% lung function and can remain stable there (like I did for so many years). BUT, I do believe it will take time and will be like a full-time job.
I think getting active is my best chance. It's just hard to be motivated when I'm home 14+ hours a day by myself and over an hour away from my family and friends. I really need a walking buddy or something.
This week has been a struggle. Along with hitting more walls in becoming a family this week, and not seeing my health increase, this week my Grandma Kunkel passed away too. I'm traveling
back to my hometown for the weekend for the visitation & funeral. So I'm just doing everything one day at a time. Or my head will explode.
This year will be as much of a struggle as last year I have a feeling. BUT, like last year I really believe some beautiful things will happen to make it all worth it. Last year, we bought a home I absolutely LOVE! We also celebrated a year of marriage, went on a short vacation with my friend, Ryan. And Andrew and I decided to start planning for a family!
Hopefully 2017 brings equally beautiful things into our life to over shadow the negatives and I can just get back on track and healthy.
Just. Stay. Motivated.
So I decided this year just to examine where I am at now and take it a day at a time.
My doctor explained my lung function in a great way that emphasizes it's importance. I have at the most 65% lung function (due to permanent scarring & damage). Which, it's sad to realize at my healthiest, I'm still missing 35% (over 1/2 of a lung). But the lowest I can go is really 20% and I start preparing for a transplant at 30%, so 30% is somewhere I don't want to be EVER! So if I have between 65-25% range from best to well (worst)... where I am now (38%) is terrifying. Here is a chart to explain my lung function battle & how fast I can drop due to getting ill...
My lung function is currently sitting at 38% again, so I'm headed downward really fast. So whether that includes more IVs, hospital stays, taking me off Orkambi, I don't care. I want it back to 55% and hopefully work my way up to 60% from there. I feel like I have been struggling for over year. Up and Down. In 2012 at the beginning of the chart I was in the 30s and did go up to 55% after a full year of working out, jogging every night, and really pushing myself to the limit. However, back then it was a gradual decrease, not a sudden cliff dive like this time. Which is why my doctor was concerned with some of my CT scans. So I just have to keep at it and I have been preparing for my appointment & lung function test on Tuesday of next week. I will keep you all updated.
I'm starting to doubt and let the negative creep in. I need higher lung function to carry groceries and complete daily living, but mostly I want to be a mother. I worry I won't be able to carry my child around if I'm stuck at the level of lung function I am at now. I can't do laundry or any yard work. I can't leave the house in the winter. With Andrew working two jobs (80 hours a week) I can't expect him to take on being "bascially" a single parent on top of everything. So I need to get my health prioritized NOW!
Andrew & I have been looking into more options to become a family and that is reason enough to stay focused!
We don't want to wait years to start a family. We have been talking about since before we were even engaged how we wanted kids & how quickly we were planning on becoming a family. I'm 32 years old and in CF years.. That means I feel 52 with my arthritis & decreased lung function... some days even older...So it's a lot of stress and information to process right now. We have been hitting more obstacles and its costing more money to jump through the hoops to become parents. It has been tough to say the least. So Andrew has been dealing with the agencies, while I focus on my health. We will give you an update in the next few weeks about our Family Planning Journey.
I fully believe I can get back to 60% lung function and can remain stable there (like I did for so many years). BUT, I do believe it will take time and will be like a full-time job.
I think getting active is my best chance. It's just hard to be motivated when I'm home 14+ hours a day by myself and over an hour away from my family and friends. I really need a walking buddy or something.
This week has been a struggle. Along with hitting more walls in becoming a family this week, and not seeing my health increase, this week my Grandma Kunkel passed away too. I'm travelingback to my hometown for the weekend for the visitation & funeral. So I'm just doing everything one day at a time. Or my head will explode.
This year will be as much of a struggle as last year I have a feeling. BUT, like last year I really believe some beautiful things will happen to make it all worth it. Last year, we bought a home I absolutely LOVE! We also celebrated a year of marriage, went on a short vacation with my friend, Ryan. And Andrew and I decided to start planning for a family!
Hopefully 2017 brings equally beautiful things into our life to over shadow the negatives and I can just get back on track and healthy.
Just. Stay. Motivated.
Sorry to hear about your Grandma's passing and good luck getting back on track and staying motivated. I too struggle with being active, (and as a CF Mama, setting a good example.)There have been times when I found listening to podcasts helped keep me going as I would have stopped much sooner except that I wanted to hear the end of the story. Save your favourite ones only for exercising as an enticement. Take it one day at a time and be kind to yourself.
ReplyDeleteThat is a great idea about podcasts, etc. Thanks! Sometimes life just hits ya with everything at once it feels like, but I am trying to stay on top of it. Hopefully Tuesday's appointment will give me some insight & help too! Thanks for commenting, it's nice to no I'm not alone!
DeleteYou're welcome, and no, you are not alone. I have noticed that not many people tend to leave comments on blogs and it's something that can add to the isolation and loneliness - CF is lonely enough. Thanks for sharing your story. I'm glad that you got good news and it must make it easier to handle all that has been going on lately.
ReplyDeleteIt does make it all easier. I did a dance workout for 10 minutes yesterday, so baby steps. I'm bad at commenting on other's blogs, so It doesn't bother me too much. I do keep track of the number of views & always look forward to comments on my CF FB page :-) Yes, Cf can be very lonely, thank goodness for social media! Thanks Nancy! Hope all is well with you guys!
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