Hope for COPD

My lil Tiny last summer in Myrtle Beach. So, things are kinda crazy in my life right now. Most of you know about the move, I still haven't made... Too many loose ends to tie up before I can do that. Had a friend that needed a place to stay, she stole from me, and has tried to cause trouble for me. Oh well... Won't be helping her again. This old house is FULL of stuff from my parents and I have to find a way to get rid of all of the things left here, get the yard in order, and all presentable. Thing is I have zero help. So, I have to hire help to take care of everything. Good help is hard to find.  Also, some of you might remember my trip from hell last summer... Well, I am going again. Call me crazy, I know. Haha. Just can't let my father go alone. Hoping to get over this massive chest cold before we leave on Friday. Remember, if you have COPD, you want to take an expectorant, NOT a suppressant. An expectorant will help thin the mucus in your lungs and you will be be...

SUPPORT GROUPS When I was first diagnosed I didn't know much about COPD.  I knew it had to do with not breathing well. It was, in my opinion, a senior aged smoker thing. How could someone my age, some HEALTHY and ACTIVE, who only smoked a half a pack a day or less, HOW could I get this??? I was in my 30's! Thinking back, I had it in my twenties, and just didn't think anything of it. It was an occasional breathlessness. As a kid, I was never an athletic girl. Always the last one picked in gym class. I didn't like playing in any sports, or anything physical. But, I  did love  walking for hours  at  the forest preserve, and was always there when the weather was good! HOURS, not minutes, of walking the trails. I would say hiking, but not quite. So, I had COPD. Stage 3 at that point. But, what does it all mean? The woman who first diagnosed me accurately, told me something scary.  "Getting sick just one time, might be your last."  She was...

(UPDATE AT THE BOTTOM) I thought I would write today about my experience with filing for Social Security Disability. It is not and easy task for many Americans. For some, the rare few, they are approved right away. Not in my case. After my being denied, I missed my appeal filing deadline because of illness and a friends death. Then, I had to reapply, get denied, appeal, denied again, appeal with an attorney and go to hearing.  So here is my experience with this so far, remember post this if you need to apply.  First a little back story in case you haven't read my first few posts. After I realized I needed to quit working to focus on my health and achieved a clear and accurate diagnosis, I did just that. I accessed my savings, and knew I could live for about a year without a job. I had already been seeing a physician for 2 years about my getting bronchitis or pneumonia every 2 months. "It is because you smoke." That is all he ever said, then prescribed a Z...

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 pre...

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 stat...

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 ...