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Showing posts from November, 2014

Recommended blogs.

These blogs are great!

For some, like myself, I love to read! I love to learn about everything! Especially, reading to learn about how to cope with my chronic illness! Hearing the stories others share on their blogs and websites is inspiring to say the least. Here is a list of the blogs and websites I read and recommend to others. COPD is such a complex illness. Everyone has a different experience, and for some, it is just one of many illnesses we must cope with. So, I do not discriminate. These blogs cover a everything. Not all are specifically COPD related. But, they are about life, hope, and healing.

If you need some inspiration, check out these great pages.

http://www.secondfirsts.com/category/blog/

http://copdinfocus.blogspot.co.uk/

http://living-in-a-limited-world.blog.co.uk/

http://gracequantock.com/

http://www.pajamadaze.com/blog

http://bitzofme.wordpress.com/

http://bobsnewheart.wordpress.com/?ref=spelling

http://thejourneybacktolife.wordpress.com/

COPD apps. UPDATED 11/24/14

APPS... Whether you love them or hate them, they are here too stay. 

I have found them to be a great way to help manage my COPD, and give me something to do when I am feeling too down to do much of anything. Sure there are games, you can even read books, watch videos. But, I am talking about the apps that are going to help you live better. 

The apps I have inserted links for, are all for Android, because that is what I am currently using. There is a good chance they are in the iTunes App store as well. And, all are for America. But of course, there are many great apps for other countries. Check them out!

There are apps to help you manage and take your medications on time, remind you to refill them, and keep a log of all of this to take to the Dr. office. The most comprehensive app I have found for this is the MediSafe Meds and Pill Reminder. I love it!

The apps listed here are not COPD specific. They can be used for many different illnesses. Most are free, but a few come with a price poin…

2014 through today.

2014.... What can I say about this year so far? My FEV1 is down to 26% which is pretty bad. Well, I heard those tragic words spoken at my last appointment.... 


"you qualify for a transplant." 


So far, I have been working on that. Getting my weight down. I had been up to 206, but have kind of stopped losing at 184. I'm trying, but it doesn't seem to be working!

My pulmonologist had me come in for another evaluation before she went on maternity leave. Since I was doing great, she decided to wait to make the big decision until AFTER she comes back from her leave. She also put me on a long term antibiotic. That is fine with me. I would rather try to keep the bacteria colony living in my lungs under control. I guess, it is kinda like birth control pills for bacteria! 

I am working on myself, trying to get as healthy as I can be, and waiting for her to get back to work. So when it came time to see my Pulmo my insurance lapsed! I put in all of my prescriptions and the pharmacis…

2013

So I have changed pulmos and my lung function has decrease at this point. Struggling to quit smoking and stay quit. No one calls me, no one invites me out anymore. No one seems to care that I really need them and WANT them in my life. As my lung function decreases, so does my group of friends. No one wants to be friends with a chick that is going to possibly die in a year or two.

Seems as though I try so hard to stay positive and do right, no one seems to care. Not many seem to offer help or even a kind word. No matter. I will be strong and positive for myself and my children like I always have been. There are too many what if's? And, to many other questions going through my head this year.

I want to write personal letters to each of the friends and family members I have. I know I can't write EVERYONE. But, those that I have been closest too. What do I say? Tell them good things I assume. How they helped shape my life, how I valued their friendship. Been looking for stationary t…

2012

2012 was full of waiting... Waiting to get into the new Pulmonologist. Waiting to get into pulmonary rehab. Waiting for my insurance o cover nicotine patches. Waiting to get results from my Alpha-1 test. Waiting just to wait more. Last year, I filed for social security disability. WAITING to hear from them. Waiting and wanting this to all go away. 

Nothing eventful happened, just more appointments, some medication changes.  I feel like I am cheating on the readers of this post! There was just a lot of waiting. Of course, I sat down and googled COPD. I watched videos about COPD. I joined many online support groups, and learned each persons COPD journey is very different, yet very similar as well. There is not clear setting or situation with COPD. There is no definitive reason one gets COPD. Sure, the majority are or were smokers. Although pretty rare in my experience, Alpha-1 is a genetic defect that causes COPD. There are people that are not Alpha-1 and never smoked and have no heavy e…

2011

FINALLY got a new Dr. that asked if the Respiratory Specialist could take over my appointment! YAY! Susan Collazzo talked to me about everything, ran some tests and told me I may have asthma, but I have a bigger problem. COPD, my lungs were very ill and I needed a different medication. My lung function at that time was charted at 40%. She talked to me about the disease, and asked me many questions about my habits... Where did I work in the past, what environmental exposures could have caused such damage to my lungs? 

Sure, I smoked. I smoked for many years, about a half a pack a day. Occasionally, I smoke a little more than that, and never smoked anything weird. Honestly, I smoked marijuana very rarely... Maybe one hit every year or two? Seriously, not my thing. And, I never smoked anything else. No, I am not saying that smoking did not contribute to my illness... But, it is not the major cause. It is an aggravator. And, has caused less damage than me being sick with pneumonia for near…

2010

After I had my little princess, of course I had maternity leave, and a week of vacation, I was still so tired! Something wasn't right. I waited until she was 6 months old to have the gallbladder removed. Hoping it would help me regain all of the energy I had lost. It is amazing how cutting FOOD out of my diet helped prevent further attacks while I was pregnant. Even after the surgery, I was still so tired, it never went away! 

By now it is mid 2010 and I am making several Dr appts. Going in every 2-3 weeks to try to find out what is wrong with me. I mean, I know last year was rough. But, I am pretty tough. I don't crack under pressure. What I do is internalize stress. That stress exhibits in different ways, usually making me tired! After going to several appointments and getting nowhere, I decided to rethink how to handle this. The old Dr, did send me for a sleep study. Which came out okay. Sure, I have a touch of sleep apnea, but nothing that requires further treatment. By yea…

2009

Sometime between late-December 2008 and January 2009 I got pregnant. The how, we all know that. Why? Well, I ended up with the most amazing little girl! So all of that really doesn't matter. She is the light of my life, what drives me, what makes me breathe, she is just precious.

Okay, so anyways... My mother was also going through some major medical issues at that time. I cannot begin to tell you how many trips to the ER, or how many times she was admitted to the hospital, or transferred back to the nursing home. If I got a phone call, I left work to be by my mothers side, unless that wasn't possible, then I went as soon as I got off. I was working full time, and then on the weekends my middle daughter and I went to concerts to see my friends band play. We helped promote and sell merchandise, and we loved it. My oldest had given birth to my first grandson and my second was a "wild" teen. Mom was working too much, she had too much freedom through the week. With their …

INTRODUCTION

Hello!

I am so glad you took the time to check out my blog. This will be my way of communicating to everyone, my struggle with COPD. Sorry if you are confused! The name change required me to repost all of the previous posts. Please forgive this inconvenience! 

The next several posts will be about the first year I found something was wrong, and a summary of year following that. Of course, I will sprinkle in some more personal info about myself and interests here and there for those who don't know me or don't know me very well. 

Being diagnosed with this "invisible" disease has been tough. I am only 41, and was diagnosed in 2011. I have a tiny little princess who is just 4 years old! My two older girls are 26 and 20. And, I have two grandsons as well. So with this diagnosis, I worry so much about them all. I want to see my little girl and grandsons, and my future grandchildren grow. Being there for their big days, and their bad days, and all of the days in between is so i…

Stop the stigma. I'm angry, and you should be too.

***Very opinionated post, may cause anger, is intended to raise your blood pressure.

Please take a moment to read this article: How does stigma surrounding COPD affect research and care?

That article is the inspiration for this post.

Since being diagnosed with COPD I have run into a few people that wanted to blame me for my own illness.

"Well, you shouldn't have smoked!" Coming from someone who also was a smoker, but had quit years ago.

"It's your fault, you smoked!" Again, coming from some who had also previously smoked!

(If the so called facts are correct, since they both smoked over 100 cigarettes in their life, they WILL get COPD) I personally call BS on that.

This post is not the most pleasant. I am just tired of the BS. Even the questionnaires, and studies I have done, focus only on smoking. They read like a huge demographic study...

Zip code?
Age?
Sex?
Highest education level completed?
Income level?
Did you smoke?
Who much did you smoke?
Have you q…

World COPD Day 2014

This year I am teaming up with Concentric's #daretostair campaign to raise awareness! I hope that you will all join me to help raise awareness! COPD sucks, so little research is being done! We need to FIGHT and make more people aware of this very misunderstood illness. 
Share with your friends, family, and dare them to take the stairs November 19th! 
Ask them to share videos or photos on social media sites documenting their stair climb using the hashtag 
#daretostair
Let's help others understand what COPD is like.








Could you have COPD?
With increased funding, death rates DROP!!!!

We MUST raise awareness to help ourselves, and our loved ones! 

I cannot do this alone, I need you to join me. 


You can find me here:

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COPD Foundation

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