The name of this blog is breathing in life. I find it interesting that so many people take for granted breath. The average person breathes about 23,000 breaths in a day. For someone with lung problems who struggles for each breath, that is a lot of struggle. I’m beginning my journey of dealing with Interstitial Lung Disease (ILD). I don’t know what to expect, but I know it is a progressive illness. I can’t imagine what it will be like to struggle more and more throughout my life for breath. I can’t imagine what it is like to be at a point where you fight and then hope, as you struggle, for a lung transplant. I do know how frustrating it is when someone tells me that I just need to take a deep breath or try some newfangled way of breathing.
If I let myself think of my future with ILD, I get scared. There is no time line that says, on this date you will not be able to breathe and will then be able to “qualify” for a lung transplant. I hate the idea of living life suffocating.
The only thing I know to do is to take care of myself in the absolute best way I can, and if possible try to set myself up for a time when my activities will be more limited. Until that time, I’m trying to eat well and exercise daily.
That thought of exercising daily sometimes feels boring, and so I have to mix things up. However, while exercising and searching for various videos, I came upon this video. At around 2:40 in the video she talks about a downward spiral. “Breathlessness means you do less, which means you become weaker, you get flare-ups of your lung disease, you end up in hospital, you become weaker and panicky, and the spiral continues. ”
The point is, the only thing I can control in this is trying not to let weakness take over my life. The weakness is a strange thing. I work out almost every day. You would think by doing this should be very strong, and yet, going up 3 flight of stairs will make me gasp for breath, even with oxygen. I can continuously feel myself trying to stay ahead of this curve. I don’t think about how unfair it is or feels. I keep reminding myself to do this. It is no longer a lifestyle change it is a way to stay alive and living a productive life. I tell myself, “Modify or change exercise as you have to, but do it. ”
Psuche
Prelude:
Over the past weekend, you may remember I had a wonderful time with my daughter and granddaughter. We approved the sculpture at the foundry and then took a long trip from the foundry to the beach and a memorial service for a friend. My daughter took a photograph of my granddaughter and me at the beach. We are at the waters edge looking out over the waves, holding a large stick. I had grabbed this from down the beach on my walk. The two of us were caught up in the sight of the seagulls trying to get a fish which was swimming in the waves. The gull’s pals were hoping for failure as they hovered nearby to step in should he not succeed. From a distance, the photo created a very serene image. Within it was a poor fish attracting some hungry birds. Backing off and looking at the image I loved the stature of the two of us standing against the shades of blue. I loved our focus and my granddaughter holding on to the stick below my hand.
I sat in the waiting room with another person dressed in scrubs I had mistaken her for a technician until I noticed her bootie socks similar to my own. They scheduled her for a brain MRI. They found a tumor in her brain after a recent seizure. She was younger than my daughter and had a seven-month-old new baby at home. We talked about how we have cried after diagnosis, me remembering the first doctor’s voice just a few weeks back saying 3-5 years. We talked about how we try to be positive. I asked for her first name-Kate so that I could pray for her. If we could trade years. If I knew I had so many left or God only gave so many out, and they could be traded I would consider giving some of mine to her. I’m 57. I lived a life. Sure I want to be there for my child and for my grandchild, but she has not even experienced those things yet. Please, God, watch out for her.
I entered the MRI room and they told me:
1. I would be in there for 90 minutes.
2. I would have to breathe and hold my breath.
Both these things seemed impossible. I had come with a migraine but figured if they would not let me have coffee or chocolate then having an Imitrex was out of the question. I packed one with me for after.
One lovely tech said that she didn’t like MRI’s and she would put a washcloth over her eyes. Since she offered and I had a migraine anyway, I asked her for one. They provided oxygen. I didn’t know I would be strapped down and when they put a machine on my chest and asked if that was ok. I wanted to say, sure. I have limited breathing, go ahead.
They put me in the machine and had to bring me right back out. I looked up at the guy through my tears and said, “what if I can’t do this?” He told me I had to commit to the 90 minutes or it would not work. I could not do it 1/2 way. There were no other options and because I had to breath and hold my breath, they could not put under.
Wait, I told myself. I have been meditating. Using the 10 % Happier app and the new meditation app that I loved that a friend shared with me. I have been practicing control and letting go. So, I tried again, breathing and calming myself. I’d like to say that my practice of meditation worked, but what worked more was my granddaughter and that picture from the previous weekend. Every time I would freak out I would hear her say, “Grab the stick gamma. Look at the waves.” I can’t tell you how many times that happened-many. Other times in my meditation we had a picnic and also sat on the edge of the beach dripping sand on our legs. If things got bad, I would feel her little hands on my cheeks; she would hold my head firmly look me in the eyes and say, ” I’m here, you got this gamma, I’m not going to let you freak.”
All in all, it was a pretty profound experience.
I’m not sure what the test will show or how they can see how big the hole in my heart is. I mean, in the ultrasound I had to bare down for them to get an image. I do know that I’m ready to feel better and if this surgery helps, then sign me up.
Until then I will keep breathing and if I feel panicked I’ll remember to hold the stick.
Pusche
Edit:
Today I think a lot about the words “Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me; Your rod and Your staff, they comfort me.” I think I have a new visual and internal knowing of what this means because of this event.
This weekend was an excellent one. After the news from the doctor, I finally have hope again. Maybe if I have this heart surgery, I can get my life back. It was a stellar weekend with travels with my daughter and granddaughter to see one of my works of art. It was the first time it was seen by the public. It made me feel so good to share it with them and to see their response.
I went to my friends funeral. I wrote about how crazy it was to lose her, and how it scared me into getting all of my affairs in order. I signed papers that day.
I also went to look at trailers. I have posted about loving to camp, and I had given up the idea of it for the last few weeks, actually the last couple of years. I have not been well enough in the months that we could camp here in Texas November – April. But going to see the TAB trailers and discovering a group of women called Sister’s on the fly, who camp all around the US was giving me hope. I’m allowing myself to dream of a future. Which is something after getting the scare that I did in January.
Please God, let the doctors discover and treat my heart so that I might get better. I’ll deal with the interstitial lung disease, but maybe this heart thing will give me back my energy.
” I know the plans I have for you,” sayeth the Lord
“Plans to prosper and not to harm you. Plans to give you hope and a future.” Jeremiah 29:11
