Month: September 2018

This summer we spent a good deal of time around pools.  My granddaughter is on a swim team, so I spent time observing and my daughter and son-in-law are living in a rent house with a pool while they build their house.  Pool parties were the norm these last two summers as having a pool means social events, which suits my daughter perfectly.

I have not owned a real bathing suit in a while, and with my healthy lifestyle change, and the loss of over 35 pounds, anything I did own was old, ragged and hung on me. As I  walked around with a wet bathing suit, the bottoms hung and it looked like I had pooped my pants. I decided to buy a new bathing suit. Up to this point, I was wearing a sports bra, shorts, and a t-shirt.  I was delighted when the bathing suit came in. I put it on and went in the pool sitting calmly on the steps inching my way in until just my chin was above water.  As I did I noticed, I could not breathe as well. I wondered if it was the pressure of the water against my chest. I mentioned something to someone, and we figured it might be the bathing suit. I stuck both hands in the underside of the top and lifted it out and indeed I could breath better.  The new bathing suit was a waste of money. I would not be able to wear it again.

One day I came across this inflatable bull for the pool and showed it to my daughter. The next time I came they had purchased it. It floated in the pool alongside the swan and the floating chair I purchased last year. My son-in-tried the bull and fell off several times. I pulled it over to the steps in the deep end and tried it myself. Please note: I’m not on oxygen all the time, though I take it with me wherever I go.  I can have a coughing attack that leaves me breathless and a little blue. I also work out every day even through my diagnosis of Interstitial Lung Disease. Climbing on the bull was a bit tricky but I was convinced my daily yoga balance and core strength would assist. I was wrong. I fell in,  which on a normal day, with a normal person would be nothing. However, You can see from the picture that the ring is very high. One would not see  the head of a person in trouble if that person were between the bull and the ring. That is the way it was for me. I was amazed at how little energy and breath I had once I hit the water, and I was in the deep end, so I had to tread water. I was too weak to lift the massive contraption over me and to out of breath to try and go underwater and swim or climb on top.  There was a moment where I was a bit concerned.  I could see the headline; “Grandmother drowns in the pool as other played nearby.”  I could hear the voice of my daughter, and I called out to her. “I need help,” I said. She did it without thinking anything of it. I don’t think she knew how it freaked me out.

This is not me. I am strong, I have energy. Well, I did last year.  I realize that I have limitations. There is a good chance with this disease, because it is progressive, that I will have more limitations.

Later, I tried to switch to the pool chair that I bought last year. I climbed into it and began to float around and realized. I can’t do this either. Posture has become very important to me lately and being hunched over in any capacity is uncomfortable. I got out and passed my chair to another who put their drink in the cup holder and happily floated around.

So no bull, things have changed in one year.

Thankful for time spent with family. I’m so grateful I’m here even if it just putting my feet in. I get to watch my granddaughter and kids and their friends enjoy themselves.  Thank you God for this year. 
Psuche

 

 

Several times while doing my daily activities I have had people ask me, “Are you alright?”  I wonder, what is it that makes them say this. Is it my breathing, or do I have what some refer to as “bitchy resting face,” and as I’m concentrating this face comes up?  I have to ask the next time someone says something. I have a smile game that I play when walking or going to the grocery store I like to smile at people and see how many people I can get who will smile back at me.  If you have a granddaughter in tow, it is a bit easier, but I love this game. Maybe I need to play it more often.

I do notice, as I just went to get the trash can without oxygen, that these last few days, I’m winded a lot.  I’m so much better than during and after pneumonia. Back then I could not walk back and forth from my studio. It is only 40′.  I “temporarily” moved my office from the second floor to in my home, which has made a mess of what little filing I could do. I have made accommodations to my lifestyle.

I bring my tank everywhere, though I only use it if I am walking with others, walking a distance, or walking at a faster pace. There is no reason for me not to use it if it gives me some energy. I need oxygen to stay active. I also have an oximeter, a little probe I put on my finger that tells me my heart beat and oxygen level. I stopped using it for a while. One doctor told me not to use it at all. He says pulmonary patients used it too much.  I don’t know. Sometimes I use it when I’m frightened. If I use it and I see the levels are not as low as I expected them to be, it gives me some peace. If they are low, then I reach for the oxygen.

Though the good thing about the tank is that it is quiet. Because it is not running plugged in, there is no distraction.  However, the tanks are a pain in the ass. Sorry for my french, but it is a catch twenty-two. You carry this heavy tank to get oxygen, but you need the tank because you are hauling an extra however many pounds with you. My small tanks which I keep in an old camelback left over from my days of hiking and biking are approximately 16 inches tall and about 4 inches in diameter. I have a bigger one just in case the electricity goes out. My small tanks weigh about 8 lbs, and they are usually accompanied in my backpack by a carafe of hot water. I keep the water nearby because  I cough a lot and the hot water helps. The pack is heavy. Tanks also don’t last. If I go somewhere for a long period of time where I know I will need extra oxygen I will have to take extra tanks, and often arrange my schedule and activities so that I’m not away from air. I hope if this post does anything it help everyone who reads it to appreciate that they can breathe air for free, anytime they wish.

I would give anything to have an innogen G3 or G4 portable oxygen concentrator.  With this, I could go away. I could go camping, while I still have the energy to do that. It occurred to me that if the disease progresses quickly this could be my last year of freedom to go camping. I might not have energy enough to do things like that. As it is today, when I consider traveling and camping I have to say, I wonder what the altitude is there?  If I had a portable oxygen concentrator I  could fly in an airplane. If I own one, no one could ever take my oxygen away, if God forbid, there is a problem with insurance or paying for oxygen.  I feel the ownership would give me freedom. If there is a power outage, I could use the portable elsewhere or charge it up and use it.

How quickly I have become obsessed with air.

I mentioned my desire for a portable oxygen concentrator in the support group, and they said to set up a Go Fund Me, but as you know I’m doing this blog anonymously so that would be hard. They suggested someone set one up for me. They said they did that when they wanted to try stem cell. ( FYI- they had a transplant, so I suppose the stem cell did not work for them. ) An innogen G3 portable oxygen concentrator costs about $2,295. Add support, and an extra long life battery and the cost is closer to $3,000.  That is not in my budget, not with doctors visits and co-pays and tests.  I keep hoping. I keep visualizing an innogen G3 sitting in someone’s closet left over from caregiving for a loved one that will some how come to me.

If you see me, you will notice that my breath is shallow. Many things influence my breath- the clothes I wear, the seat I am sitting in, my posture as I’m sitting, and how much food I have eaten.  Still I’m so excited that I feel well, even with these limitations. I’m working and so thankful.

This entire post reminds me that I’m often breathless, but I’m alright, thanks for asking. Sometimes I need to stop and rest, up the oxygen or change positions.

It reminds me of a joke I hear in my head. One pulmonologist asked me a bunch of questions from, “Do you raise alpacas to do you sleep with feather pillows.”
Then the question that has me giggling.
“Are you breathless during sex?”
I can only think if you are not breathless during sex, is it worth it?

Right now, I’m o.k. Thanks for asking.
Psuche

HINT: Along with my camel back, oxygen, and water bottle  I have purchased some alcohol wipes and keep the small packets in a pocket.  You never know when the nose cannula will touch the ground or another service. I try to be careful. I also have some hand disinfectant clipped to this bag.

The Osprey Verv 5 camel back is a bit pricey, but I love it. It is big enough for the tank, a small purse, my water bottle and other things.I have a bigger back pack when I need to carry more things.  But more than it being a good size it has a chest strap and a waist strap. This allows me to hike or do long walks without the pain of the shoulder straps.  There are some options in carrying it. I kind of also like the fact that sporting this camel back I feel less like a patient or sick person and more like I’m active and on the go. I plan on staying that way or doing that as long as I can.

Psuche

It was a year ago this week that I decided to make a lifestyle change.  It was not something I entered into lightly. I had been contemplating it for a while.

What were the changes?
* Move to a mostly plant-based diet.
* Try and exercise every day. ( I chose the treadmill as it is convenient.)
* Do yoga stretches and chi gong or tai chi every day.
* Give up alcohol
* Give up caffeine- I now drink lemon water with ginger every morning.

Later I added a few other things.
* Decrease sugar intake
* Focus more on a gluten-free diet.
* Add weights and core work. – This did not happen for six months
* Meditate more often- Still working on this one.

Why did I choose these things? 
I wanted to be the best me. At 56 I  was aging, and I knew my body was changing.  This commitment was not a fad, or gimmick or anything like that. It was a choice. Making these changes allowed me to focus on the spiritual. It was an honoring thing that I was doing for myself.

What changes did you see? Did it make a difference?
One would think that doing this would make me healthier. I guess I am, but I started this in September 2017. In November I was hospitalized for pneumonia. Looking at my spreadsheet, when I started this I was on medication for my breathing.  I was coughing. There is always this stupid cough. Now I know why, back then I did not have a diagnosis. I do know that having this lifestyle change as a part of my regular ritual meant that when I was in the hospital, my blood pressure was steady, and I feel that it added to me not dying. Yes, the doctor that admitted me to the hospital said she feared I’d die in the middle of the night. Though it took a long time to get better from pneumonia, I mean between pneumonia and my lung disease, I felt weak for a good six months. But I think it added to my strength and endurance.  Yes, I continued this lifestyle change on my recovery.

An added benefit of this routine was that my skin cleared up, and had a glow about it. I lost about 35 pounds, and I have gained strength and muscle.

Yoga
I became limber. The day I started the yoga I did poses at home to help me with opening up my lungs.  I remember when I would first go into a cobra.(Which I later pushed to upward facing dog.)    This pose would be apart of a sun salutation, and when I would go into a kind of plank to cobra, I would try to scoop my face toward the mat. Yea, well, in the beginning. I just stayed flat on the exercise mat trying to catch my breath. There was no scooping. It is kind of laughable when I look back on it. I guess I’m stronger now, at first, every stretch hurt. Now I embrace them even if I still can’t put my hands flat on the floor when I bend over. I have, however, perfected a headstand!

Chi Gong
The dragon and tiger chi gong took about a month to learn. I guess I’m a slow learner. I’m not sure what it has done for me, but I hear it is one of the most healing chi gongs you can do. I also put it in my daily practice because I knew it was something I could do no matter what my health. I did it in the hospital. I would never think of getting on a hospital floor to do yoga. Gross! I also continued my walking in the hospital, often with my daughter pulling the then very heavy oxygen tank behind me.

With both of these in my daily practice, I can feel when my body is changing, or if there are problems. I’m communicating with me. I’m taking notice and nurturing. It helps, and I would miss it if I didn’t do it.

Treadmill
This part of the routine has changed. There were days that walking was exhausting. I bumped down my times, speed, etc. The point was not endurance; the point was commitment.  At times the doctors made me slow down. I had people telling me to stop altogether.  But I did not. I went slow when I had to. I know that stopping altogether would have caused me to age very quickly and my body to become tight. I love the treadmill as I can do it with my oxygen. I have not gotten off of the oxygen since being sent home with it in November. However, I only use it now when I am exercising or sometimes cleaning the house. I no longer think of the oxygen as a hassle. I think of it as energy. I can do more because I have oxygen. I am no longer causing damage to my internal organs because I don’t have enough oxygen.

This lifestyle routine is an ongoing adventure and journey. I’m glad for the changes that I have made, and I look forward to adding and improving on these changes. I enjoy looking for new additions in vegan cooking for my diet, and I hope to soon give up my last tie to the meat-eating world, eggs.  However, eggs and breakfast have a strong relationship for me to comfort, the family, etc. I’m being gentle with myself on giving up this one, but know it will soon happen.

All in all, it is one of the best things I have done for myself. Now with my diagnosis, I know that it is even better. On several occasions during testing, Doctors have asked if I had any caffeine. I know if I should ever need a lung transplant that they will look at how I care for my body. In this area, I will shine with bright colors. Studies have shown that those with lung problems should exercise. I sometimes wish I had an indoor bike. I think of this because my knees give me problems at times and I believe alternating with the bike would be good. However, for me, it would have to be a recumbent bike. Sitting up straight and holding on to the handles of a bike is difficult for me. At first, that was because of the pressure on my wrists. My hands would go numb.  Now it is also because of the posture of that type of a bike. Leaning over makes it harder for me to breath as it squeezes my middle.  A recumbent bike allows me to sit back. Maybe one day, if something like that comes into my life, I’ll add it to my exercise room. Yes, I made one room in my house into an exercise room, though I still do my yoga and chi gong on a mat in the living room with the front door open to let in morning light.

Happy anniversary incredible body of mine. I appreciate all that you are and all that you do.  I thank god for the abilities I have every day. Every day in the middle of my yoga I touch each part of my body and give thanks for it. I only have this one body for which I can travel in this beautiful world. This is how I celebrate all that it does for me.

May you embrace the you inside and honor the body that goes with ou on this journey,
Psuche