My COPD Journey

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

Melody Kool

AKA Gina White

 

 

Chronic Illness

Today is Saturday. I had a really eventful week and today is a rest day. I didn’t used to have to take rest and stay at home days unless I just wanted to. I have made significant progress in controlling my COPD and exercising and staying well at least a well as I can be.

I have made it through the attendance period for playing in my game with my Clutch City Crushers next Saturday. I made attendance, I have been in full contact and on Thursday night participated in the 5 on 5 mini tournament. I was able to play in back to back jams that lasted a full 2 minutes. I also jammed when it was my turn. This is a significant accomplishment. Only a few weeks ago, my heart rate would go too high to jam. I keep a close eye on my heart rate as much as I do my breathing and my ability to catch my breath. This is a new normal for me. I have had to make some major changes in my lifestyle, my diet and overall daily management.

This post is to document my how I made progress, what I went through to get here, and my plan for the future. This will probably be long and not real pleasant but I need to put it down and people need to understand.

I spent all of 2016 sick off and on like I had not been since I was a child. I was treated for sinus infections and cough and exercise induced asthma. I had a rescue inhaler that I got when I was sick and I continued using it as it helped with endurance practices. By November I got really sick and had been on and off antibiotics for several months and the last round had no effect. The day I finished them I called for another appointment because I could not catch my breath and the cough had gotten worse instead of better.

When I got to the Dr late afternoon, I could barely breath to walk in and the rescue inhaler was doing nothing to help. The put a pulse ox on my finger and immediately got oxygen and put it on me. Obviously something was not right. The coughing fits had gotten so bad that I could not sleep longer than a few hours at a time. My pulse ox was at 88. The PA (because I never did see a Dr) gave me a breathing treatment and sample inhaler with a steroid in it and prescriptions for antibiotics and oral steroids. I was also scheduled for a lung x-ray the next day. The results came back abnormal so I was referred to a pulmonary Dr. I was able to get in to see him on November 22. He explained that my x-ray of the lungs showed over inflation which is a symptom of emphysema and I had bronchitis that triggered an exasperation of COPD symptoms. So I now know I have COPD. I was scheduled for a PFT or Pulmonary Function Test.

I had the PFT test done on December 8th. The follow up appointment with the results of this test showed that I had 50% lung function. This was a total shock, how on earth did I loose so much lung function without noticing it. Well, that is because the disease progresses so slowly we assume the changes are age related and as in my case I was being misdiagnosed. I blame that on never getting to see an actual Dr and the PA dismissing my continued symptoms or not recognizing them. I also, did not realize that I should have been insisting on more attention due to increasing health changes that seemed minor at the time.

As things started getting worse, I notice several things that I dismissed as age related changes. First I noticed that my fingernails which were always strong and thick became paper thin and just tore off if they got a little long. I was also having major issues with my feet cramping and just hurting when walking. Since I skated, I assumed it had to do with that and looked for insoles to help. I ate more bananas but that had no effect on the cramps. I got better from the flare up in November but right around Christmas time I started to feel bad and cough a lot more. Now I know that is a sign to call the Dr and get on medication immediately. Not understanding that, I thought I could overcome a cold by myself with over the counter medicine as I had always done before. I made it through Christmas.

On December 30 I was struggling at work. I got home and went to the bathroom and to change clothes. I could not get back to the family room without stopping every few steps to try and catch my breath. I could not call out to my husband because I did not have enough air to talk. I was sweating and beginning to panic. I finally made it to the family room and fell on to my spot on the couch and tried to catch my breath. I still could not speak. Bobby asked me if I needed to go to the ER, I did not understand what he was asking at first, I was just trying to breath and control the panic. He asked again and I was able to shake my head yes. This was the scariest thing that I have ever been through. To see me today you would never know I have this disease, because it is invisible but I feel it all the time.

That visit turned into a 5 day stay and being released with oxygen. I was on oxygen 24/7 for 13 days. I was able to start weening off of it and was able to go without finally. During that time I was on IV antibiotics, shots of steroids liquid magnesium and Xanax. I went home with to my inhalers, a nebulizer machine, oral steroids and antibiotics. The oxygen company came and set up the concentrator and showed me how to use it. I had to sleep in my couch recliner in order to not have to move the oxygen from room to room. I had a tube long enough to reach the kitchen and hall bathroom. This I know will eventually be my future.

I have had several setbacks but I am finally staying well enough to be mostly normal. I found a FB support group started by a Dr that has the best information on how to help myself and after reading everything in his book (https://pulmonarywellnessbook.com/ in case someone reading this needs this help) I am taking my medication correctly and at the right times. This has helped immensely. I started slow on the exercising and plan to add strength training at the end of the month. I have changed my diet considerably and now take my supplements regularly, only indulge occasionally in food that is bad for my COPD and drink less alcohol. I also require more sleep. On days such as last Thursday night after practice I got 5 1/2 hours of sleep. I felt that all day and a lot of why this is a rest day. I went to bed at 10 my normal time and slept until almost 9 am. This is also my new normal. I had gotten used to being up by no later than 7 and I used to be able to work from 6:30 to 3:30. I can no longer do that. Practice nights are too late and I cannot get enough rest. My chances of getting sick go up when I don’t get enough rest. That is somewhat depressing but it is what it is.

I have however, come a long way from last November and most of this year. I will have to plan my travel and vacations carefully to have medication, oxygen and everything I might need in case I have a flare. The flares are not just from getting sick, any airborne irritant can cause them. That means smoke of any kind, exhaust from vehicles, perfumes, lotions, pesticides to name a few. I can tolerate essential oils and some mild cleaning products so far and I will find out how much the heat and humidity bothers me this summer.

Now I am experiencing hair thinning most likely from the inhaled steroids I have to take on a daily basis. I have found that my AdvoCare work out product O2 Gold helps me utilize oxygen at any time and this has been great asset for me. If ever I needed proof that something did what it said it would do, this has been it. I have been trying a supplement for my hair and we will see if that makes any difference. So far I cannot see that it is.

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Mother’s Day 2017 with my girls

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November 22 2016 Pulmonary Dr visit

The new SOB (Shortness of Breath)

I guess I have been in a little bit of that river of denial, believing that I could be normal as I was before the diagnosis.  When I would feel better I do more than I should at a faster pace than I should.  It is what I was used to.  I walked fast, talked fast, did things in a hurry and rarely slowed down as it would make me anxious to be non productive.  Although, that was probably the definition of non productive that I had learned as a child growing up.  Just sitting and relaxing and not jumping up every 5 minutes was a chore, just ask my husband, it drove him crazy.

I am slowly learning that it is ok to take my time doing things.  I am also finding out that even when I SOB I can recover on my own.  I stayed in the practice last night during hitting drills.  The drill when I did it got me and I then had to be ready for hits coming to me.  I stayed with it and was able to catch my breath eventually without passing out, lol. It was scary and hard but I did it.

Because I have been having issues the past week or so I was only able to 23 1/2 laps in 5 minutes.  Plus I am totally blaming the new skates and wheels, I wasn’t near as comfortable on them as my old ones. They are still being broken in and it was only the second time I wore them.  I got another chance on Thursday and got 24 laps. I stayed in the drills and even made a few good moves against the jammers.

My biggest problem is trying to figure out what triggers the blocking of my airways.  Other than the obvious of  cigarette smoke, pollen and perfumes, there are times that I get sob and cannot figure out what triggered it. Some days I wake up sob and others not as much.  I take all my meds as instructed and yet some days can be bad.

After some more research, certain foods and drinks contain ingredients that can cause the airways to become constricted and therefore doesn’t allow me to receive enough air to keep my oxygen levels up. There is so much to learn and so much I don’t get or understand.

I have joined a Facebook support group that has a Dr on it giving us videos, explaining all the things and just learning how other people cope with the day to day struggles. I try to stay positive but every time I think I am close to staying well, I get Bronchitis again. I took a short trip to see family and came back sick and back on antibiotics and steroids. I don’t get to play roller derby in my game this weekend. I worked so hard at getting healthy and exercising and now I can barely stay on skates for longer than 3 to 4 weeks. My family had to see just how awful this is and it was disheartening and depressing. Every single thing in my life has changed and dealing with it is the hardest thing I have had to do.

We all take the fact that we can breathe for granted. Because of the constant cough, I am always thinking about breathing. Deep breathing, expelling as much air as possible and often as possible, preparing for activity, taking medication, eating healthy, pushing through the bad days. Giving up is not an option I just have to push past the disheartening effects that I have no control over and keep moving forward one step, on day at a time.

Here’s to more progress for the next post!

Love, Kool

Back on the Track

Hello everyone!! I am finally back to skating and looking to clear for contact very soon. I know I was only sick but I wanted to take my time and come back when I was ready.  There was a bit of fear of going back too fast and making myself sick again. Also, the mental part and anxiety over not being able to breath.  That was the scariest thing I have ever experienced and do not want to have it happen again.

The other part of this whole thing is that I can not feel very well but you cannot tell by looking at me or talking to me.  I don’t have the same amount of energy and just a long day of working can wipe me out.  However, even that is getting much better.  So it is time to get back to full contact and strength training and I am going to start running. Well, jogging at a very slow pace is running to me but it should help with the anxiety about my breathing.

I am super pleased to be a part of this group of awesome ladies working along side me to get back to playing in games.

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Winding Down

This post will be more about me than roller derby or family.  I am struggling with this new diagnosis, that has me reeling with questions, concerns and dealing with the symptoms. It is also the end of 2016 and time be reflective and self evaluating.

So Christmas is over and it was another super good day with family.  Leading up to Christmas I was feeling pretty good and more like myself.  I went out and shopped and did a bit of walking around.  I tire so much easier now.  It is so very frustrating.  I worked hard to get into good shape and it seems to just be disappearing.  I took the PFT test which was actually very hard and tiring in itself.  I have found out that being able to walk for 6 minutes and your oxygen level stay good is the goal for COPD in order to not have to be on oxygen. That was not hard that day.

By Christmas day I was having issues again.  Back to the rescue inhaler and unable to be really active.  I push myself because that is what I have been doing for the past six years.  My shortness of breath concerns my kids, my husband, everyone.  My new normal is learning how to catch my breath and slow down the panic I feel when I can’t breath.  There are several things and they have started to help me.  The cough though, that is debilitating when trying to bring up the junk in the lungs.  It can be so hard it makes my whole body hurt after.  I just want to not have to cough for longer than a few hours. 

Monday was a bad day.  I couldn’t do much of anything without feeling it.  It was a struggle just to do the laundry and put things away.  This is not the way I planned my future to be.  And I am not wanting to accept that it can’t be better.  I know I still have to discuss all the test results and plan the long term care but that won’t be until January 10. 

Until then I am stuck with not knowing what has caused this to flare back up and not sure how to handle the symptoms.  I just want to be able to compete in roller derby this next season.  I hope I am not being overly optimistic but exercise is suppose to be good, it just seems the more I move the more the symptoms come back.  Hopefully the Dr will have more answers for me.

My life has changed drastically in the past couple of months.  Dealing with that is increasingly difficult when I have 3-5 days feeling normal and then right back where I was before.  I have taken some positive steps and started grocery shopping and cooking again so I can eat better and feed my husband better food.  And I am working hard to stay positive and not let the depression overtake me.

This one is a bit of a downer but I have to work through this and hope that anyone reading can understand that.  This writing is part of my coping and analyzing myself and serves as a big part of self therapy.  Every day I choose to be happy whether I feel real good or not so good.

May God bless you and yours in this new year!!

Until next time…SMILE and LAUGH

Melody Kool