Category: Family

Family, Roller Derby My New Life

Transplant Journey that wasn’t

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At the Rodeo, Happiest Day of the year 2022

Oh what a journey this is turning out to be. We had the first set of tests done on December 10th 2021. The next appointment was February 10th 2022. Now we have two days in April and two consults in May. I have still not been able to test as a Donor. The process is tedious and long and so very frustrating. I have never been through something that takes so long. We just want to get it done so Bobby can live a fuller, healthier and more normal life.

I understand some of this but it seems that it could be streamlined a bit. Having to bug them to get appointments is not a good way to handle the business. But we are in it for the long haul. We will get to the end goal!

If you know anyone that is on Dialysis you know what a toll it takes on the body and mind. Yes it is life sustaining but as time goes on the quality of that life goes down. Many of these people have multiple health issues and their best option is to get a transplant. But not everyone can qualify to receive a transplant for a multitude of reasons. I was not aware that if you cannot show financial ability to pay for the life long anti rejection drugs then you could be turned down. This was not going to be a problem for us.

However, on May 17th 2022, Bobby passed away. He did not make it to the last 2 appointments. I am heartbroken and relieved that he is no longer suffering. I just wish we could have made it through the process. I know that this is God’s plan and I am ok with it. He was my love and life for so many years and we did so much together. I will miss him but I will not miss watching him be miserable and in pain. I start on a new journey and I will be here for my kids, grandkids and all my family and friends. I will be fine, I know how to take care of myself. I have the support that I need at anytime.

This is not what I would have chosen for the remaining years of my life. I wanted to retire, to travel with my love and to grow old and cranky together. Not everyone is blessed to live long but we were blessed to live so fully and to do so many things. We lived well and I would not trade it for anything. Bobby touched many people and he was blessed to be loved by everyone who knew him. I am grateful for the 27+ we had together. I will miss him for the rest of my life.

It did bring our son back home for which I am eternally grateful. He has been a blessing to have with us and we can finally give him the support he has needed all these years. I thank the Lord everyday for the family and friends that support me through all the things still to come as I move through this year of firsts without my husband.

May you rest in peace until we meet again my love. See that we are all doing ok and we loved you more than you could ever know.

Family, Health, COPD

My COPD Journey

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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

 

 

Family, Health, COPD, Roller Derby My New Life

The new SOB (Shortness of Breath)

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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

Family, Roller Derby My New Life

Work Life Balance whhhaaaat??

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This amazingly isn’t just about Derby, these are personal reflections.

I have been working at my company for 32 years wow that’s a long time!!  I can remember when I first started and how ambitious and anxious to learn and do a good job and spend every chance I had working to get ahead, (whatever that means).  I probably had an idea of what that was way back then.  I was young, worked hard, played harder and then came the family.

I remember still wanting to work, feeling guilty for that but doing it anyway for multiple reasons.  Mostly because of divorce and debt and twin girls to raise but also because at that time, just raising a family was not all I wanted to do.  I have enormous respect and admiration for mother’s who take on their families as their full-time job just as much as I do the ones who work and help provide for their family that way.  But it took a long time to feel good about my choice.

Now, I am happy with that choice and most of my other choices in life.  I did learn how to spend quality time with family and how to instill the importance of family to my girls and my son.  Our reward for this is the grown children finding family traditions just as important as we do. It was my husband was who helped me to grow up and appreciate everything about me, and us.

The corporate world during most of my work life had no time for balancing work and life, it was all about working yourself ragged and proving how valuable you are to the company.  Which even then meant nothing, really.  I have seen this gradual change to flexible hours, work weeks and multitude of other ways to have a life outside of just working.  I love that I have lived during this change!

I really can’t pinpoint when I personally changed from being all about the company to realizing that I was working in order to do the things I enjoy, and have the means to do them.  In other words, I work to Live, I do not live to work.  I take my vacation days and holidays and random other days because those are the things I am working for all year to be able to do!  And believe it or not I do like my job, however, I see that light at the end of this tunnel, retirement coming right upon me. Don’t get me wrong, I still have a good many years to work but I can see myself retiring now and that used to scare the daylights out of me when I was younger.

I have a hobby (Roller Derby, DUH) that is expensive and time-consuming and the third best thing to ever happen to me.  First being my husband, second our kids.  I can honestly say I love this life and even though I will never be a CEO of anything, I am rich with all the things that matter most to me.

This journey of life is all about choices, and accepting the ones we have made and striving to make better ones along the way.  My priorities today are nothing like there were 31 years ago, or even 15 years ago.  They change, they evolve, we change and we evolve and grow with experiences all the time.  I have had to learn to embrace this instead of carrying around a load of baggage that did nothing for me but bring me down!

I have learned so much about myself, my capabilities and passions just from Roller Derby. I am so thankful to have found it and for a family and husband who supports this craziness that I absolutely love! I hope to one day pass this passion on to my beautiful Grand Daughter Katelynn! (and the grand children to come)!

Derby Love to all and remember to LIVE life everyday! Choose to be HAPPY and you will be!

Melody Kool