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

Look Back Move Forward

Exactly one week ago today, I found out I have a health issue.  I have spent the last 6 years working hard at getting into shape, eating better, being healthier.  Ironically, I have been diagnosed with Emphysema.  I have more tests and scans and things to do in the month of December to clarify what that exactly means for me.  But, I have had to stop everything to focus on getting over a lung infection.  That, was the easy part because when you cannot breath, you do not move, you do not talk, you only do what is critically necessary.

The medication from the pulmonary specialist is working, I am feeling better, otherwise I wouldn’t be writing this lol.  However, I am now faced with a lot of other decisions and those are going to depend on what I can actually do.  I start back working out next week.  I am staying off skates awhile longer.  I have had at least 2 relapses over the last 5 months, but now I know what is going on.  Knowledge is my power, and I will accumulate as much as possible.

The looking back is what I did when I was young and stupid and thought I would live forever.  I smoked off and on for years.  I was brought up around second hand smoke for the better part of 12 years of my childhood.  There were no places where smoking was not permitted, in stores, in offices, in museums, on airplanes, anywhere was legal.  I do not blame this nor do I pretend that I did not contribute to it.   I knew better but didn’t change my ways until what was probably too late.  I am probably just more susceptible to this disease than others.  So, I accept my part in it, and now I find out what to do to minimize the issues and slow down the progression.  I have seen what it does and what it is like.  I am not looking forward to that, but a lot can happen between now and then.

When I started dong roller derby, I walked away from smoking completely, I couldn’t see how people could play and smoke.  But that was my choice and my dad wanted me to stop so badly that even though he was gone, I did it for him as well.

Moving forward, I plan to stay with derby as long as I can and learn NSO jobs and possible Ref jobs for when I can no longer compete.  Exercise is just as important for me now as it was before because the better shape I am in, the better quality of life I will have for longer.

I hope that maybe my experience and information here will help younger people make better decisions about their health than I did.  There will be more to come as I go on this new unplanned journey.

Life is fleeting and one day everyone will face their mortality as I am right now.

Until next time!! Hugs and Hip checks!!

Roller Derby – Joy & Pain

Hey everyone, it has been a while but I have been moved to write some more. This probably will sound all preachy and negative but it is only intended to bring things to our attention and to consider our own behaviors within the context of a roller derby league and team mates.

I have been doing this roller derby thing for 6 years now.  I have played, I have studied the rules and the players, I have watched more games than I will ever play in.

It is in my nature to study and observe people and I am driven to teach what I know.  I usually take the backseat quiet position and observe, to learn things.  Roller derby is a team sport where you have to communicate verbally.  That was the single hardest thing for me to overcome.  In my fresh meat days, I got yelled at a lot for not talking.  I was scared I would say something wrong, or sound stupid.  However, I have recently been informed that I am negative.  I was surprised by this, but as someone who is constantly working on myself I have to consider that something I do causes me to appear negative and I will definitely work on this.

In the mean time to all my league mates, if you have felt this from me I apologize and would appreciate letting me know when I am being negative so that I can better correct this behavior.

I am definitely not a great player, and I am so much older than all of my league but I have knowledge and I have observations that I want to pass on to those who can play so much better, to help them and not cause them pain or make them feel bad.  I might not be able to do a skill but I can see what others are doing and help with what I see, but it seems that this is not being received in the context that is intended and there is probably something wrong with my delivery.  I have studied and am still studying coaching as this was something that I have considered doing as I won’t be able to play at the high level our league is aspiring to, and roller derby needs coaches.  I obviously need to learn more.

If we do not communicate with each other on the track, we will not learn and progress and that is just as much for me as it is for others.  I need feedback too, there are only a couple of people who tell me things I can do better, I by far need just as much coaching as the next person.  I acknowledge that I will never be a stand out player but I want the league to succeed and have standout TEAM and be on the sidelines cheering them on to all the victories.  Our All Star team needs our support.  Everyone is important to our success and growing and we all need to take a little time to get know each other.  Inclusion is the key, we migrate to our own comfort zones whether it is with our bestie on the team or keeping to ourselves, we all have the desire to be accepted but we all have to be willing to be accepting.

We are all quick to encourage and lift up our freshies but vets need this also.  It is easy to get behind someone we see potential in getting them “all star” ready however, not everyone is going to be this and those others need just as much encouragement and to feel like a part of the league.  There are many many roles to be filled for a successful league and everyone should acknowledge and embrace all of these roles and the people doing them.  There is no rule that says you have to like everyone or be buddies with everyone, but everyone deserves respect and inclusion.

Hopefully this will cause people to think about these things.