Looking for answers to life's questions

Posts tagged ‘Pulmonary Fibrosis’

The Ugly Truth

It’s been hard to come up with the bandwidth to post since my life has no routine right now. My mind is a reflection of the chaos in my new home. It’s much easier to share my accomplishments than my shortcomings.

Would it fit? We got a bigger truck just in case

I decided to tell you the ugly truth here. I’ve had my ‘stuff’ here for over a month already and my place looks very much like a hoarder’s home. There is stuff everywhere and nowhere to put it…yet. It’s a total embarrassment as progress is slow.

As before in my manufactured home, I wanted the house to tell me what it wants. I hung no pictures so everything is sitting on the floor waiting. For what?

I sold three large bookcases that I didn’t want to move again. They were starting to show wear due to many moves. IKEA has no inventory in this area of the bookcases I like and there is nowhere here to buy anything similar. So, my son is building some to fit what little space I have to put anything. That will take time.

Where does it all go

I also left behind the flimsy drawers that held up the sewing table, which is a 2×8 sheet of plywood.

The move was hard in many ways. The movers came late in the cold day. We were already exhausted shuffling around things and chilled to the bone. The movers tied nothing down so my son did his best to tie up what was obviously going to come crashing down.

It worked and very little broke. At least nothing I couldn’t live without. I can thank my son for driving the 1500 miles very gently. The offloading was quick. Again, I had hired help. It was worth it to save our strength to put things away. The kids helped me so much getting things where they needed to be when I could no longer do more than point. I’m ever so grateful for that help.

When I put the quilt Emily made on my bed, I was home and cozy.

I’ve unpacked almost everything except some books. Until there are shelves, they remain in stacks of boxes. I look at it all and shaking my head, make a cup of tea and head to bed hoping the next morning will bring a fresh round of energy.

Still no home yet.

In the meantime, I’ve had appointments with a new pulmonologist, chiropractor, and have been lucky enough to get into pulmonary rehab. That just means that they make me exercise while tracking my oxygen level, blood pressure and heart rate. I was rewarded with a handicap placard and 24/7/365 oxygen supply.

my leash inside. Oxygen concentrator.

I’m acclimating to the altitude a second time and doing quite well in spite of the fact that some sort of oxygen apparatus follows me everywhere now. The rehab techs are impressed with my tenacity. I’m hoping to need less oxygen as time goes on. That’s the goal. Sewing is the next goal.

Clutter and shopping cart that now carries oxygen tank

Paring down  is on the list too. As much as I gave away and sold, it just wasn’t quite enough. We are working on unusual storage solutions and I’ll show you what we’ve come up with next time.

How do you feel about sharing the ugly truths in life?

From my heart to yours,

Marlene Herself

What’s Missing

My first thought when I read this prompt was the old phrase “of all the things I’ve lost, I miss my mind the most.” ~ Mark Twain

I looked at my daughter and asked if I was missing anything in my life. Her reply took seconds. I miss my original language.

Missing something implies possible regret. Missed opportunities. I think my life unfolded exactly as it should. I have had a world of experiences and two children that grew into honest, honorable and kind adults. What more could I ask for?

It seems I’ve been talking about fully learning the language of my birth more than I realized. I have even started looking at YouTube classes to refresh my memory. Was it even worth the bother at my age? What are the chances I’ll ever get back there?

Still living in Germany Age 4

I left Germany at 4 ½ years of age, starting kindergarten in Kansas City. We moved twice the next year, then went back to Germany for three more years. I attended a base school that included a class on German language to help the kids that had never been there. My playmates were mostly the German neighbors. They didn’t taunt me even though my German was not up to standards even to them.

Kindergarten photo. The top knot brought lots of taunts.

While we originally lived in Germany, my dad, with the US army, spoke to me in English and I answered in German. We understood each other. Once we landed in the US my mother ‘earned’ her citizenship with study and testing. She stated to me that this was where we lived now, this is where our money came from and this was the only language we would speak. I was only to hear words in German if she did not know I was in range. They were usually muttered to herself, never outside our home. At that time in history, we were not well received here.

I traveled to Germany twice with my mother after their retirement. The first time was on a group tour with other military couples when my dad’ decided it was too much for him. Mom needed company. We were with Americans and that was primarily what was spoken on that trip.

Me and mom’s online friends. They spoke NO English.

The second time we went alone on her last trip, to all the places she had been with my dad and to visit some new online friends. Mom was struggling with pulmonary fibrosis and the trip was grueling. We rented a car and I did all the driving trying to understand road signs and rules. Mom had forgotten most of her German but I seem to find mine out of sheer need. Each occasion requiring information brought up words from the deep dark reaches of my mind. Mom would look at me and ask how I knew those words. I could only shrug and marvel at their appearance with gratitude.

In the city of my birth, mom found old friends that remembered her.


The building where my grandparents last lived. Arm swollen from lack of oxygen.

I think that brought on the desire to relearn what I had lost and build on it. I used to think in German and translate to English. Now I think in English and work very hard to translate to German. I’m not certain I’ll get the level of mastery where I can converse fluently but it would be so nice to go there, immerse myself for a few months and then once again, dream in my first language.

Do you feel there is anything still missing in your life? How would you go about finding it?

From my heart to yours,

Marlene Herself


Where to start

It would seem an easy decision. It is not. This month has been so busy that I didn’t know how much to tell you about or where to start. I guess I’ll start with a day trip my sister and I took.

I’ve lived in my house for three years  and my apartment for two after visiting Portland many times over the previous 20 years. My sister has been my  tour guide, knowing this area like few natives do. Driving for Tri-Met (Portland’s city bus co.) for 15 years gave her an advantage not many have. Her passengers were always treated to a dialog of great information about the city if they were from out-of-town.

Beautiful wood carving

Her daughter has been accepted into the honors program at the University of Denver in the fall and sis is going to help get her settled. Yes, sis came to parenthood very late in life in a nontraditional manner but the deep love and caring are just as intense.

my sister at the mt

Little sister in front of Mt Hood

As a precursor to the upcoming trip to the mile high city, sis thought it would be wise to observe how well she could handle the altitude. Given her geriatric age (I’m sorry little sister, I just had to) and the fact she has pulmonary fibrosis, I agreed. So off we went to somewhere she had never taken me to see. The infamous Mt. Hood. It is a potentially active stratovolcano in the Cascade Volcanic Arc of northern Oregon according to Wikipedia.

getting close

Almost there. Nice highway to it.


I see it clearly every time I drive down the main street to my neighborhood. It’s quite impressive all covered in snow. But I couldn’t photograph it well while driving.

Only an hour from my home, the ride was not difficult. Sis does all the driving since I can’t go that distance anymore. It was a beautiful day and the scenery was lovely. I must say though, when we got there, I was not quite as impressed. Being on the mountain is very different from looking at it from a distance.

not so impressive

High desert is just like where I lived in Arizona. Not so impressive close up.

Timberline Lodge was built by the WPA in 1936 to 1938 and it’s beautiful. We had a rather expensive buffet lunch where I ate my money’s worth making it my only meal of the day. By the time we were done with lunch and started walking back to the truck, the 6000 foot elevation began to signal her it was time to drop down a few feet quickly.

Dining room for the buffet lunch. Good food and great view

I knew I could drive if necessary for a short distance though it turned out not to be required of me. Sis has checked in with her medical team to decide what can be done to make elevation a bit easier to do. There is no question she will make the trip to Denver. It was quite an eye opener for us. I lived at 7200 feet before moving here and neither of us had a problem at that time. Lungs are a delicate thing.

I have been busy enough that more will follow shortly. Have you had any experiences you have waited a long time to enjoy?

From my heart to yours,

Marlene Herself

In Search of Time

What is it about time that has us all in such a state? We are always running out of it or have too much of it on our hands. Often time seems to fly or it can drag on and on.

I like to read about all the changes in sciences perception of time. First they say that time is speeding up; then they say it’s slowing down. I’ve been reading a rather lengthy article on Wired Science by Sean Carroll to try to understand time a bit better. He has a theoretical physicists’ approach to understanding time. Here is a tiny excerpt._

The past is different from the future. We remember the past but we don’t remember the future. There are irreversible processes. There are things that happen, like you turn an egg into an omelet, but you can’t turn an omelet into an egg.


It’s called entropy.

What I want to understand is why time slows down when you are waiting to get well but speeds up when you are in the company of great friends. I always have a long list of things to do which only gets longer as I check things off that list but I run out of time to get them done. If I’m looking forward to an event, time drags on till that moment finally gets there. Then miraculously the event is over before you can blink an eye. It’s like Christmas when we were kids versus Christmas when we are parents.

This year is supposed to be the end of time according to the Mayan calendar. How is that going to work? Maybe time will just seem different. I’m not too worried about it since I’m always running out of time anyway.
When I was raising kids, I would swear that I needed a 48 hour day. Then, while I was working in my office with not enough work to keep me looking busy, that day would feel 48 hours long. I kept checking the clock but for hours on end, it just didn’t move.

Time is the most precious commodity we as humans have. Animals do not care about time. I haven’t seen even one wearing a watch or checking the clock. I first became aware of the time crunch when my mother moved into her manufactured home next door to me. I was aware on some level that her illness was terminal. Pulmonary Fibrosis, also known as Interstitial Lung Disease, has according to the internet, a two-five year life expectancy. We didn’t know how long she’d had it before they diagnosed it. I spent every minute I could with her during that year while still trying to give her the autonomy she desired. Then they found a tumor under her ribs and let her know it was there. She was gone in seven days and I was rocked to my foundation. I wanted more time with her.

The following year I was diagnosed with the same illness that took my mother’s life. It showed up on the x-rays. That’s when time became something to be truly passionate about. I wanted more time and by gosh, I was going to get it. So I meditated daily and prayed hard. The next x-ray showed nothing. Maybe it was a flaw in the film. I didn’t care. That was 10 years ago and I had a bit more time.

But do we ever use that precious time wisely enough? How is it supposed to be spent? Like money in the bank, you have choices to make about your time. To me it’s more precious than gold though sometimes I fritter away my money as well as my time. Now when I want to be doing something creative, my body says “no, you must rest to make up for all the running this poor body into the ground.” Bells Palsy is here to give me time and take my time. I get to read long articles about time and to do the writing I’ve never had time for. Sometimes when I’m resting I feel like I’m wasting time. We were big on getting things accomplished in my family and resting was never on the list.

It seems the less time we have, the more precious it is to us. I spent the first 18 years with my family of origin minus one to recover from a trauma. The next 18 were spent with my first husband and our children. Although by then we had been divorced for 5 years, my first husband didn’t get enough time, passing from this earth at only 42.

I invested, not so wisely, the next 25 with the last husband that wanted all my time. I still didn’t have a clue as to how little time there was to accomplish so many things on my list. As I was leaving I declared that I was burning daylight. The rest is my time and I am using it carefully. Getting well is still at the top of my list of things to accomplish. Even if wellness never happens, I get to write, take classes on writing, read, garden, sew and spend time with family and friends that support and nourish me rather than drain me. I can also continue to give of my time and resources without restraint.

Time is an illusion.”
― Albert Einstein

From my heart to yours,