Reflections

It’s almost new years eve, it’s been a year of loss, challenges, health issues and some really blessed time. I start a journey back to school for my MBA. I have stepped back from leadership in roller derby and I have been able to meet my birth father and a sister I never knew I had. I got to spend some quality time with my mom before she passed and with my brother and his family. I wasn’t here for Harvey, which is best as my compromised immune system could have made me very sick. And knowing me I would have been out trying to help all my friends. 

I want to start 2018 better than this year and so far so good as I’m not in the hospital! I have renewed ambitions and lots of goals. My job situation is unknown but I’m leaving that in God’s hands. 

I miss my mom and it makes me miss my dad more too. Since my sister and bio dad live in Oklahoma I don’t get to visit them as much as I would like either. Traveling is more complicated so I stay close to home more than I might if I was younger. I miss seeing my brother and spending time with all of them.

I will spend new years with my family here and that is so awesome to have them close. I remember being excited and scared to move away from my home town but I have made Houston my home. I wish other family was closer but it just means I have places to visit and must plan trips in the near future. I will embrace life to is fullest no matter what comes my way. I am here to live, love and grow. 

To all of my family, wherever you all, I love you and pray for you daily and one day I will see you in person! 

To all of my friends, who are also my family, I love you all and appreciate you more than you will ever know!

Thank you all for being there with your strength and encouragement so I can move thru the hard times and celebrate the good ones! May the new year being you tidings of great joy! 

Until next year, love and peace be with you! 

Melody Kool

AKA Gina White 

AKA Melody Stanford

November 3rd

23316805_10213651896387198_4324624497580321386_nToday mom passed peacefully into the next realm. It was expected, but never ready for it to actually happen. I have been visiting her at my brother’s house as often as possible. We were there last weekend. She was a 2 time breast cancer survivor, but lymphoma in her lungs was too much for her to fight. She chose not to have treatment as it would be worse on her than the disease she would be fighting. She was also 84 and Dr.’s did not recommend treating her.

I am sad for me and my family as we will miss her so very much. I know that she is at peace and with her mom and my dad. I am at work this day, and will be on my way to be with my family real soon. I have a giant swing in emotions because I am so grateful that she is not suffering anymore and it makes me feel somewhat guilty. I just hated watching her suffer and not be able to do anything. She is off to join my dad and all the others that have moved on and I know she is happy.

She was an angel, caring for my dad after his stroke for so many years. It was a tough time but it never occurred to her to leave. She was strong in her faith and made sure my brother and I knew God.

As I continue to work through the loss and all of the other changes in my life at this time, I am reminded that life here is short and to do everything I possible can to live life it to its fullest. The worst and some of the coolest things have happened this year. I am ready for a fresh start to a new year and tackle all the challenges that come along. I will remember the good times and connect with my brother and his family more. I want to visit my cousins and reconnect with my dad’s side of the family too. So much to do, so little time.

Holiday’s are hard when a loved one is lost and you never know what someone is going through unless they choose to share. Be kind, have empathy, stop hating, and love others as you are loved by your God. My heart is so sad and I am so blessed to have my family and friends to lean on and help me cope with the grieving process.

I wish everyone Joy and Peace in this season.

Until I see you again, Mom!

Gina

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.

Continue reading

New Years

For the first time ever, I spent 5 days in the hospital.  I have worked for the last 6 years to be as healthy as possible, to be able to play with my grandchildren and live life to its fullest possible.  On Friday night, I came home and had a COPD exasperation.  Fancy word for I could not breath, catch my breath, talk, walk and scared my husband.  Having been newly diagnosed with this, I waited to long to go to Dr after feeling like I was catching a cold.  Apparently a cold means Bronchitis for me and within a few days I was so sick I had to go into the hospital.

I am so happy to be home, so very thankful to my Husband, my dearest friends and my kids.  Larry and Vickie who are always there for us and came to see me twice.  My best friend Debbie, bringing me food and books and herself.  My awesome roller derby team mates Kari and Kelly who came to see me and gave my husband a chance to get out of the room.  Also, to Kari for all the food and support anyone could ever need.  All of you are my angels and I am forever grateful!

They got me on oxygen almost as soon as I got to the ER and started the tests and gave me a breathing treatment that I only vaguely remember.  I got into a room after awhile and they started all the medications through my IV.  Antibiotics, steroids and breathing treatments.  It took me a very long time to recover and I am still not back where I was before.

I finally went back to work Jan 9 and back to my pulmonary dr for results and see how I am doing.  The news was not as good as I was hoping for.  My PFT tests showed that I am in the Moderately Severe stage of this disease.  I was so hoping for a better result, but this is what it is.  My goal is to get better, not have anymore flares and stay as active as possible.  Currently, I get tired easily and all the medication is almost overwhelming.  Eating is a struggle because my taste has not returned.  I get hungry but everything tastes weird.

I am slowly getting better and will continue this journey with faith and work to stay involved in all the activities that I have been doing.  Another thanks to all my friends and family who care and support me.

I will be back on that Roller Derby track soon!

Kool

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