This has been approved to post in the Ultimate Pulmonary Wellness Group.
Yesterday I posted that I had improved my lung function 20% over the past year. I got many requests to share what I did to make this happen. I am going to explain this journey in this blog, with hopes that it will help someone else dealing with this disease.
First of all I have been an athlete for the past 7 years, participating in a sport called Roller Derby which is a full contact sport. Think football on roller skates without a ball and we play offense and defense at the same time. Check out u-tube to see what it looks like.
That being said I was diagnosed with Emphysema and Chronic Bronchitis in November of 2016 when I had been sick on antibiotics and suddenly could not breath well or catch my breath. I was referred to a pulmonary doctor and he started me on inhalers, stronger antibiotics and oral steroids after giving me a steroid shot. I got better and started doing my normal things again but by Christmas I was not doing so well. Not understanding how critical it was to get treatment immediately, I put it off thinking I could get well just like I used to. This was a mistake that landed me in the hospital on oxygen, intravenous antibiotics and steroids for 5 days on New Years Eve. When I did get to go home, it was with oxygen and more oral antibiotics and steroids and a nebulizer. I went back to work with oxygen and was eventually able to come off the oxygen after a few weeks.
I was taking my medicine and doing what I thought I was suppose to do but I kept getting sick. Sometime in late March or April I found Noah’s group on Facebook. This changed my life. I figured out I was not taking my inhalers in the proper order and at the proper times. No one told me this mattered but boy did it matter. After another bout of sickness in March (where I ended up back on oxygen) I was finally able to get over the lung infection.
Because of my husband, I am proactive in my health and I began researching and reading everything I could find about my diagnosis. Noah’s book is number 1 on my list of what truly helped me on this journey. Every single chapter made a difference, from my attitude to my nutrition and exercise program. This helped me get well enough to go on my vacation to Florida in July with my family and spend several days on the beach and walking all over Disney World. I was not fine mind you, I had to stop and rest use my rescue inhaler and take time to recover from events, but I did it. Since then I have gotten progressively better.
As I felt better, I got back into my roller derby sport and started training twice a week with them. I had to take to slow at first because my heart rate would go up to over 150 very quickly and I still got very short of breath. I had team mates that made me step off and take care of myself and not let me overdo it. They were my angels. As an athlete, I had always tried to eat better and started strength training outside of the sport training. I had to stop that training in order to get well.
One of the hardest things to do was to give myself permission to feel bad and do what I needed to take care of myself. This consisted of eating properly, and getting enough good sleep. Sleep is under rated and is required in order for your body to heal. Humans do not seem to understand just how important this is. It is also easier to get good sleep when you exercise. Nutrition is the other very important thing. I have learned to listen to my body as it will tell me what it needs in the form of cravings. Since I don’t eat a lot of sweets and avoid fried foods, I don’t crave those things. Instead, I crave carrots, or green vegetables, roughage, or salt because I have very low blood pressure and I do not put it on foods or use it to cook with. I listen to this because these are the nutrients that my body is lacking. I also take a multiple vitamin for women over 50 every day. This takes discipline and it is hard and I fail at it often, but I do not beat myself up over it, I move forward.
As I felt better I trained harder, but I always take a day off if I don’t feel real good and just skate without contact and do endurance training, or just walking. I take pre-workout supplements and I take post workout recovery supplements. I have had to modify my thinking and know when it is good to push myself and when it isn’t. I have to decide this, no one can tell me, only I know how I feel and what I can do. I make sure I have recovery time, as it is good to push and ok to be sore but it takes me longer to recover than the 20-30 year old women I skate with. Right along with this is not caring what people think. It is just a waste of energy. I am selfish when it comes to my health. My goal is to grow old and see my grand kids grow up. Since I cannot control what others think it is none of my business.
I also use essential oils for various things and I practice meditation. It may sound silly to some but I center my chi and balance my chakra’s. Yoga is good for you, I don’t do enough of it. I feel that the most important thing is to find what makes you feel good about yourself, what activities you can do and enjoy and do those things. For me that is roller derby which in turn makes me want to work out to get into better shape for the sport. If you like it you will do it, otherwise it is like work and you will not stick to it. I did discover that working out is addictive. So if you can get past the first few weeks, your body will crave activity.
Another very important part of my daily life is practicing deep breathing. I practice every day, multiple times a day various versions of breathing. This is also a part of my meditation. I also know that I will not be able to participate in a contact sport for long but I have already decided to learn to be a referee on skates and that will take the place of the contact sport. I have plans and I pursue them. I am only 57 and to me that is still very young!
In December of 2016 I decided to go back to school, I am getting my MBA from WGU online. You can never learn too much. This motivation keeps me feeling like I still contribute and I can stay mentally strong to fight this disease. Life was never promised to be easy or fair, it is just life and I intend to live it to its fullest!
Now with all that positivity make no mistake that I have setbacks and trials and normal human bad times with the good times. What I try to do is have more good than bad and power through the bad because something good will be on the other side.
An example is July of last year my mom was diagnosed with lymphoma, after having survived breast cancer twice. She was in her 80’s and chose hospice. I went up to see her at least once a month until she passed in November. I drove 9 hours up to see her at my brothers and the same coming back. It was hard and tiring but the most beautiful thing to get to spend a lot of her last days with her and my brother’s family. Sitting with and talking with my mom about everything, she asked me if I asked “why me” and felt sorry for myself when I found out I had COPD. Only because I have had significant self growth before this was I able to not ever ask this question. Instead, my focus was ok, how can I live with this and how can I help myself. I know that smoking when I was younger contributed to this but I had kicked that habit almost 20 years before and I never felt that this was my fault. I do not let what others may think or say about this bother me, if they think that way, I either educate them and if that doesn’t help then I have not time for them. I have found that my attitude towards others is all I can control and letting their ignorance upset me does me no good. If they don’t get it, I move on. I know that one day I may need lots of help and that burden will fall to my family but they all know this and we are close and support each other in life. I feel like my positive attitude works miracles on me and others. Now, I have to say that I also take medication for anxiety which helps with the positive attitude and being able to maintain it. That diagnosis came years ago and I have dealt with it for a very long time. But it is what made me look at ways to help myself but I still have to take the medication.
Mom’s illness slowed down some of my workouts but I still walked on the treadmill at the hotel. I was finally able to start back with a trainer in February of this year. I am doing cross training with lots of weight lifting. I found I can do so much more than I ever thought was possible. We have so much strength within ourselves and we don’t even realize it most of the time. And even when we do realize this, we have to remember that it is ok to cry and feel bad or be blue. Just cannot wallow there for long periods of time or it will be harder to come out of it. This is another way to relieve stress and it is very important to control stress. I am working at company that is selling my business unit, we have known this since last December, still do not know who will buy us and if we will have jobs. We know it will be around the end of the second quarter. I could use this as an excuse to stress out and make myself sick but I choose to trust in my God and work on a path forward regardless of the outcome. My health cannot handle this type of stress so I do what I have to, to get rid of it. I talk about it with my family, friends and co-workers. We lean on each other.
Wow, this was a lot and I hope it makes some sense. I honestly believe that we can control more with our bodies than we know and maybe someday there will be proof of this. I am very fortunate in that I have not had other major health problems and this could be why I was able to improve so much. I know that multiple health issues make it much harder to help yourself. However, when I heard the phrase “use it or lose it” it has become my daily motto. I was a couch potato for a couple of years before I found roller derby and I was well on my way to not being able to do things that I should have been able to do, so I know you have to use your muscles, your lungs, your eyes, your brain or you will lose things over time. I hope someone finds hope and help in this and would love to hear other’s success stories.
As always work hard and play harder
AKA Gina White
5 thoughts on “My COPD Journey”
A great and inspiring story. The group has taught me more than any Dr. I have ever had appointments with. Bless you and your continued journey.
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Thanks for sharing your story. Were you ever tested for Alpha 1? Your story reminds me of so many of my alpha friends story before being diagnosed correctly.
Just in case you haven’t, you can get a free, simple blood test that can be sent straight to your home. http://www.alpha1.org
My pulmonary dr had me tested and I just got the results. I have a mild diffiency and he is researching it. He said it explains how emphysema came so early
My name is Kathleen Engel and I am an editor at Health Monitor Network in Montvale, NJ. My company publishes guides on various health conditions that are distributed free to patients through doctors’ offices.
Right now I am working on the next issue of our Guide to COPD and, in my research, came across your site and story. Gina, I would love to feature you in our next issue. I am certain you would give our readers inspiration and hope.
I’d be happy to send you a PDF of our last issue, so you can see what the guide looks like before deciding whether you’d like to participate. If you’ll email me at my work address, I’ll get that out to you ASAP.
Thanks so much for your consideration.
Senior Editor, Health Monitor Network
Oops, that’s email@example.com.