Month: August 2019

Posted on

Lung Days

99% of the time, I live quite normally. As I noted on my home page, the whole point of this blog and project is to encourage people with chronic diseases and incurable conditions to find life in their days and do what they can to find joy in things. I went from being miserable and caught up in the fear and anger that goes with such a diagnosis to living again, upon hearing the song “So Alive” by the Goo Goo Dolls. No matter how you feel about the band, I know what they did for me. Most of the feedback I have been getting about these posts has been positive so far, and I appreciate that. But there have been a few naysayers who don’t like the Goo Goo Dolls or the perfume I wrote about last time or whatever.

Those people either aren’t reading the posts, are reading them but not getting the point, or are reading them, getting the point, and are simply trolls. I respect the opinions of you, my readers. But this is not a space for negativity and nastiness, and I will not tolerate it. Want to be that way? Move along. There are plenty of other websites and blogs out there. You are wasting your own precious time reading something you don’t agree with, and those of us who probably don’t have a lot of time left certainly don’t have it for you.

Now that I’ve made that statement, I will move on to the point of this post: lung days.

Lung days are days when I am forced to be aware of my condition, when the disease announces its presence and reminds me it is always there. Last Sunday was such a day.

I went to OrangeTheory that morning, feeling very good after a solid night of sleep and lots of hydration. I started on the rowing machine and did very well. Then I moved to the floor, where we were to do planks, alternating shoulder touches while in the plank position, then double crunches. My heart rate was up because of the rower, but I got through the first round of the exercises with only a minimal amount of pressure in my chest area. During the second round, I felt as if all the air was being squeezed from my lungs, and when I flipped over to do the double crunches, I felt the blood rush to my head and more pressure in my chest. And on the third round, the pressure became too much and I blacked out. I was only out for a few seconds, but it was enough to scare everyone around me and embarrass the heck out of me.

With pulmonary hypertension (and the valve disease it has caused in my case), certain movements can cause this to happen. I was told never to do chest presses while laying on a bench. At least not with heavy weight. I have to limit overhead presses too. I have trouble with pretty much all inverted yoga poses, including down dog if I hold it too long.

I put a lot of strain on my arms when in a plank position, and my tightened core also diverts blood back through my vena cava to the right side of my heart. The pressure becomes too much and my heart can’t pump enough oxygenated blood (thanks to the narrow vessels in my lungs), or compensate for the increased pressure. I get dizzy, my vision gets fuzzy, and everything goes black. This is really the first time it’s happened; I have come very close to passing out in the past while doing the chest presses during Body Pump before being diagnosed many years ago.

The OrangeTheory instructor was wide-eyed when I returned a few days later and made a modified routine for me. So did the instructor at Crunch Fitness today. It’s kind of embarrassing. And it’s another sign my disease might be progressing.

Or maybe I just worked too hard that day, and the disease is unchanged.

Those of you with chronic conditions understand how frustrating limitations can be. But despite the emotions that go with having to modify my routine while others carry on getting stronger and more fit, I have learned to feel the “twang” of fear and sadness, then let it go by. I decided to keep going to the gym and keep race walking and hiking despite my slowness.

It would be easy to back down in the face of this new development, to retreat back into that place of darkness and fear. But the song “So Alive” is not about that. It always comes to mind when I am challenged with a new symptom, along with other songs from the “Boxes” album. “Over and Over”, “Long Way Home”, and “Soul in the Machine” can all set me straight and give me courage to push onward.

If you want to exercise, please make sure it is okay with your doctor first. Although I am a nurse with many years of critical care experience, I am not qualified to decide what you can and cannot do. My own doctor advised against swimming, pressing weights overhead (or doing chest presses with heavy weight), and avoiding high altitude. But studies have shown exercise to be both mentally and physically beneficial in pulmonary hypertension.

I will keep doing what I do and will try not to scare any coaches, gym instructors, or fellow hikers anymore.

Posted on

Feeling Alive: Kat von D Perfumes

Kat von D’s “Saint” and “Sinner”

Whew. As I type this, my eyes are grainy and tired from waiting for my computer to do some updating and writing future posts during that time.

Although I have been dealing with a chronic spending and money management problem for years (since about age 12), there are some times when being pragmatic has to go out the window for the sake of feeling alive. Because when you have a chronic illness, you are not guaranteed many opportunities to do so. Sometimes I purchase things I don’t need, and spend money that really should be going elsewhere. But I rarely regret my purchases.

Two of the things I love are in the photograph above. “Sinner” and “Saint” travel sized perfumes by Kat von D ( http://www.katvondbeauty.com ).

Last year, I wandered into Sephora for something else when I spotted a magnificent bottle on display at the entrance to the store. It was the full-sized bottle of “Saint”. The bottle intrigued me. I had never seen anything like it. So, being the impulsive/compulsive shopper I am, I grabbed one. It smelled terrific, and I only buy one perfume per year and that year was up. So I got in line to pay for my wares, including the item I had gone there for and a few other things. Sephora does that to a woman.

I promised myself I would only choose one of Kat von D’s two perfumes, the other being “Sinner”, with an equally ornate but black bottle. While in the checkout line, there was a young girl dressed in Goth style makeup and clothing. I overheard her telling someone else she did not like “Sinner”, so I was confident with my choice.

But I hadn’t even tried “Sinner”. Once home, I found myself becoming more and more curious about it. A few days later, I was back at Sephora testing “Sinner”…and I loved it! Later that day, I had TWO very ornate perfume bottles on my dresser, and I had my choice between which one to wear.

My “perfume year” is up once again, and I still have the ornate bottles sitting on my dresser, half full. The reason I only pick one perfume per year is that I am forbidden to wear perfume in the workplace, and I work a lot. I wear the perfumes on my days off, but there was far too much in each bottle to go through it all in that short time.

So this year I decided to actually BE more pragmatic about my choice and go with the travel sizes. But I am not going to toss those ornate bottles anytime soon. They are simply too pretty, and I need beauty in my life.

Even with lung disease, most days I can tolerate perfume as long as I don’t put too much on. And before I sat down to write this (after I took the photo), I opened “Sinner” and spritzed it on my forearms. It is totally wonderful, a small pleasure that has elevated my mood and made my day a tiny bit better.

For me, this is money well spent. In time, there will be medical bills and expensive medications and maybe even disability to worry about. Some say I should be saving all I have for that time. But I feel I need to LIVE during this time, being as pragmatic as possible but within reason. There will be plenty of time for seriousness later, when I can no longer do the things I love. Even when that time comes, I vow to still find things I love and adjust them to my capabilities. Life is meant to be lived, and these little perfume bottles will help me do that in a small way.

Posted on

Back Again!

Hello everyone! It’s been a while since I’ve written anything, here or elsewhere, and there are reasons. But I am back, and I hope to update you all more often.

Those of you who have read my bio know I am a huge fan of the Goo Goo Dolls and of U2. A big reason why I’m inspired to write today is I am between Goo Goo Dolls shows. Last Thursday, in Scranton, PA, I had the wonderful opportunity to meet John Rzeznik and Robby Takac again. Although I had met them before, the thought of meeting them again brought me great excitement. I started to get interested in things once more. Although the meeting was very short, it re-inspired me on many levels. John complimented me very enthusiastically on one of my tattoos, and told me to have a fun night. And I did.

This experience, along with the concert itself and being among other fans, was what I needed to come out of a mild rut and start working on the things I believe in and want to do in life once more. I’ve wanted to be a life coach for many years and worked on it in dribs and drabs, but was floundering with that dream. I also want to be a writer and a motivational speaker. All of these things got a shot in the arm Thursday night.

Notice how I didn’t say I want to “get faster” or “get stronger”. Ideally, I do. But it’s not likely to happen because those are areas of my life that depend on the capacity of my heart and lungs. I have to be reasonable with what I expect in terms of physical fitness.

I do not have to be reasonable regarding my ability to help others through my coaching, writing, or speaking. I can be totally radical in those areas. There are no excuses anymore for holding back.

Concerts tend to inspire me, especially when they are with my favorite bands. One of my first coaching lessons required the learners to list 100 things that light our fires and make us feel good and want to move forward. What makes you move? What stirs your heart and lights a fire in your belly? What can you be grateful for? Look around. What do you see that has beauty?

Things don’t have to be miraculous or big to be inspiring. And when we feel depressed or weak, we can still choose to find something to be grateful for. There is always some way we can do good for others, regardless of ability.

I saw two severely disabled fans at the concert. One was in a wheelchair and looked very frail, however she smiled and clapped and danced in her seat during the whole show, having a great time. The other was young and walked very slowly with a cane. I am not to the point of needing assistance yet, but am impressed with these two ladies. They were not at home feeling sorry for themselves. With the support of family or friends, they made it to the concert despite their hurdles. I hope when I get to that stage I will be blessed with people who will take me to shows, and that I have the will to go. These women inspired me almost as much as the band.

Think about your life. Make your list of 100 inspiring things. If you try hard enough, you will find them. If you can’t find 100, find 50. Or 10. Or 1. And act on your inspiration. Do something with it. Share it with others