God sent

This last appointment was a God sent.

It is almost like the Universe has been listening . . .

The doctors have been listening as well.

The clinic received a grant for a pharmacist to assist CF patients. The pharmacist comes to you; sits down with you.

The pharmacist came in and had my medication list in hand. She had already gone through my medications and asked me what I was actually taking vs. what is prescribed. How much are my copays? She verifies if I have all the copay assistant programs for my medications.

She asks, “How many pharmacies do you have?”

“Five.”

“Wow. I am going to try and get these down to 3 or 4.”

Two of the medications are only created and dispensed at a couple places in the US, so those ones have to stay where they are. Some of the others she said, are available in groups that aren’t always known to the patient. Obviously, this is all insurance-dependent. Even if it stayed at 5 – I know it is all the insurance and not because I am a patient that has honestly not the knowledge or weight in this gigantic industry.

But here – I (we) have someone to help us! That is a pharmacist. Not a tech or a secretary, or liaison.

We talked shop. I told her why some of my scripts were written for the amount in which they are. She said, “Leave them; don’t change them.”

I asked, “Why do medications have two expiration dates?”

She smiled. It is a federal law for all pharmacies to put an automatic one-year expiration date on the medications. They do this because they believe most patients do not store their medications appropriately. So, instead of using the manufacturer exp. date, they use one-year to play it safe. But, she said, if you do store them correctly, go by manufacturer.

She said, “This is may be way too many details . . .”

I am like, “Oh no, I want to know this stuff.”

I asked, “Do they mine Vitamin K at the bottom of the ocean?”

She laughed. She told me that, “No it is naturally occurring.” She told me what is was used for in the past was mostly for heart patients, but new medications have made Vitamin K less needed. Then, they stopped making it or dispensing it, or very little. Then a Giant saw an opportunity to make money and trademarked it.

My copay, depending upon the pharmaceutical contracts can vary from $50-100 a month. Currently it is $50. There is a generic out there, but she was doing the math between the two, and it makes more sense to pay it outright and then when I max out on my insurance, stock up.

You see – this pharmaceutical racket has created this complex system, and where humans naturally have this instinct to survive. To do so, we find loopholes and gateways – and we are determined. Eyes narrowed, hand-up.

It is all such big money, and they know they have us. But she is a pharmacist! She might as well be wearing a cape!

She is going to go through my medications and call my insurance company and my pharmacies, God bless her. Then she is going to email me her findings with the direct CF contact number for each of my pharmacies.

This saves me so much gray hair.

Oh, and I was honest about my extra herbs and vitamins that I take. I wanted to double-check if anything was counteracting inappropriately. I didn’t truly think they were, but you never know. All were fine and she did give me a couple tips that I did not know and she told me which ones have been studied to be safe. That was cool.

My PFTs were great. Stable. It was the first time I did them at the clinic. They have a special CF waiting room and lab and it was immaculately clean. They use an infrared light to check for germs.

I blabbed about my Neti-pot and how fabulous it is.

The respiratory therapist (not Ann as she wasn’t there), but Amy came by and we talked about which air compressor. I am just paying for them outright. They are $80 a piece, not bad. I am getting two, my choice. She had Dr. Billings sign the script. They called today and they are running a 15% discount, so cool. It is small and powerful.

A new medication Phase II study results came out – looking very good. There is actually 2-3 things wrong with CF cells, as my doc said “It is a complicated disease.” This medication is triple combo to address each issue.

I will just wait and see. Phase III is probably happening right now. I don’t like to say too much and until to rolls out and see how it does in the population at large.

I am not going to lie – I have a hard time breathing in Minnesota. One of the big reasons I left. My friend, Lisa, thought maybe the farms, pesticides, etc. They blow and absorb in the ground and then get into the air we breathe. I don’t know, but the bronchial-loops was exhausting. My shoulders were tight and I got a headache before clinic from coughing so hard. I always sound wheezier.

I was concerned about my PFTs. I almost refused or cancelled. But, I took two puffs of my allergy inhaler in the morning and then two hours later two puffs of the bronchodilator.

Whenever I return home, my coughing deescalates like the ski jumper climbing the hill in that “The Price of Right “game. He climbs to the top and falls off the cliff; intense coughing that turns into not much at all. When I have visited the west coast I have done well, and Iceland still beats everywhere else I visited.

So – there you have it. The conundrum.

I ordered the basic Total Gym model. The one with Chuck Norris and Christine Brinkley. I saw an infomercial on the teevee on the plane, although I have eyed it for years. The price point has gone way down.

Working out at home is sometimes, not always, like dog-yoga. Ben jumps on my chest and lays down with his butt in my face. Both Ben and Chester have crawled under me when I do push-ups or downward facing dog. Chester rolls over to pet his tummy and rolls all over my yoga mat. Then he sneezes on it. I have to stop to wash it off. So there – I am excited.

Can I say something – I think the Universe wants me to live.

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A good orange hat

My spirit is reaching.
Endurance.
Strength.

I have to say I truly dislike the month of February. I don’t know if it has to do with the exact opposite of my birth month – some sort of polarization going on, or just that the month is difficult with weather and a lot of darkness.

I remember being in grade school having a heck of a time with it and just marching on through it.

But that’s the thing – I don’t believe in marching on through it or through anything. It is like having to trudge up a hill with a 20 pound pack on your back. I don’t believe life should ever be like that. It could be conceptually I am odds with it.

One could say – take a trip! When I take a vacation, I try to be in the right space; meaning slow it down, don’t get ahead of yourself, don’t think you got this until the trip is over. There are so many things that can go wrong when I take a vacation, which leads to no longer being a vacation.

When I went to my writing retreat over a year ago, I brought my vest because I drove. When I plugged it in no air came out. It whistled and sucked air, but nothing came out. The timer continued to count down and nothing.

I didn’t panic because I usually don’t travel with my vest because it’s big, heavy, and then these things happen. This isn’t the first time when I have brought my vest and the clock ticks down and stares at me while I stare back with my vest on and no air. When I got home it worked of course. Why? Who knows? A glitch.

I did a bunch of P90X exercieses as I brought my portable DVD player, and I brought my newer Brookstone cordless percusser hand massage that I spent $200 on. A great device. It still works today but you never know it could blow up any moment. I bought it on Amazon and I check ever-so-often if it is still available. Let’s check again.

Nope. Amazon doesn’t have it. Brookstone is out of business too, which I kind of heard. Homedics is an international company which has a comparable percusser, or so I think from what I can tell. It just has to deliver enough power, that’s the thing. You know what – I can always go back to my handy dandy European vibrator. Omg – that is a life saver. Insert blog story here:

https://tdub2034.wordpress.com/2016/04/01/harmony-uk/

Moving on – travel can be difficult. February can be difficult. The peoples’ energy can be difficult. I have to play my banjo more, it breaks up that static and energy that I pick up all day long. God – it is exhausting. You just have to ring out that energy.

I wanted to say, I am doing fucking fabulous besides that. I am actually excited to see my doc in MN and tell her how great I have been doing symptomatically. Viruses and infections can come for sure, as I am typing; however, symptomatically I am doing amazing.

That neti pot has changed my life. All that junk isn’t getting into my lungs. I say to anyone, give it go. Use distilled water and if you want to warm a touch, do that. YOU CANNOT USE TAP WATER. That’s where the problem occurs. Also, I rinse alcohol in it and through the spout every time I use it. I do it in the morning and evening and I can do it really quick now. I actually can’t wait to use it because I know I will feel that much better. I will probably replace it soon just because you probably should.

This is my problem with people – when you give them an idea or a possible solution to the problem in which they are having and they dismiss as fast as you open your mouth; shutting the door before the words travel to their ears; before the speed of sound as a chance to settle. I shrug my shoulders. Take your energy elsewhere. I not perfect but at least give the idea a go.

Complaining is a vortex of shit. It goes nowhere but down.

When I think of things I don’t like – first thing comes to mind is drinking mucomyst. It is some of the worst tasting shit ever. My dog sniffs it, looks at me, and walks away.

This is more of a point, not a complaint – perhaps the tiniest bit, more of a fact, but I still roll with it:

For quite some time as a kid and as a teen it was part of my routine. I came home and my mom had a shot of mucomyst mixed with Pepsi or Coke (darker sodas masked the taste some if you could say that). They measured out whatever the doc recommended, 3-4ccs worth. Mix it equal part with soda and swoop it on back as fast as you can. You wanted less liquid as possible, but you needed something to cover it up.

Mucomyst breaks up mucus which in CF guts hopefully prevents obstructions. I was born with the classic CF obstruction and have an anastomosis at my appendix area (I hope they took my appendix) and most of any of my acute gut pain happens there. When I travel I bring extra mucomyst just in case.

As an adult when I have to take it I think “Maybe it doesn’t taste as bad as I remember.” Nope. The stuff taste as disgusting as it ever did.

In Boston they don’t prescribe it at all – in nebs or for your gut because people just won’t take it. It’s one of the meds that catches Boston docs’ attention that I am not from here.

I am from the planet called Obliviion (with two I’s) or MN where their stats hold strong because they are firm believer in mucomyst. So, you swoop it back, gag, and drink a bunch of water afterwards. Plus, it’s great for your kidneys.

So throw the neti pot back, get on the treadmill, and take your vitamin E – great for immune system, inflammation, and skin – and you do it. Life is great and I am lucky to be here.

My spirit is reaching. I may have to change up my physical location in the future to help with the heavier time of the year.

I don’t know what that means, but I know that strength comes from within and it is harder to walk and to move when you feel as if weight is holding you down or needs to be moved, almost like your clothes are soaked.

It all can be done with a little help from your friends and dogs and love of life and a good orange hat.

Post script: this blog a little long. I guess I had things swimming around. Who knew? I have to write a sonnet.

Dreams

Today is a great day. It is the last day of Tobi. I am doing my second dose earlier than recommended, but I don’t care. I want to be done for this month.

This precious hour is my hour that is on loan every other month. It isn’t bad, it is just nice when I am done.

The benefits of doing treatments, yes there are some and many actually, is you do get to pause every day. You sit back, meditate, or stare off into space. Isn’t that sort of one of the same?

I watch whole series of shows. I write, dream, and think of new projects. I sip on espresso, have a latte, tea, and yes – wine. Why not? I get jazzed for new things to come.

I have a plush set up. I have a huge window, a huge comfy chair that can hold me when my body gets sleepy and sinks in. I have a very sturdy desk holding all my ideas. I have about every electronic device in my reach. My treadmill is behind me, weights, yoga mat. My dogs are always with me in this room.

There is a mental muscle to this though. I am not going to lie. There is an agreement to all of this. I help you; you help me. The exchange of health.

I must tell you my dream. I have told some people already. This is not a meditative dream, but a real dream.

I was in Italy and at a restaurant, almost like on a peninsula of Italy. The restaurant is an open concept, stretching across the entire length of the restaurant. The sun vibrant, reflecting off the ocean. It is almost too bright to look at.

There is a large bar with standing and sitting tables throughout the restaurant. The bar is made of warm wood, think of Tuscany. Warm walnut, beech wood, while the woods become darker as your eye goes from the ceiling to the floor, finally a dark mahogany stretches itself throughout.

I am there for some reason or another with a couple friends. As we approach the restaurant I see a small group of people far in the corner of the bar – and it is Madonna!

She is there with her crew, enjoying this beautiful and expansive view. The breeze carries throughout the entire restaurant, blowing her scarf around her neck.

I decide I am going to go up to her. I mean why not. She is extremely pleasant as we chat just for a couple minutes, and gives me a warm hug. Her entourage then kind of pulls her away.

But then – about 10 minutes go by as I go back to my standing table with my friends, Madonna walks over to me. She tells me she feels a kinship with me – of course she did, this is a dream people.

While looking over her shades, her long flowing blond hair, and long black flowy outfit, she hands me this paper. It is thicker than notebook paper, almost like real layered paper with rough edging. It is square shape. She writes her number and address with a black marker on it and slowly hands it to me looking over the rim of her shades. She is entrusting me with her info.

I am in shock of course. She gives me another warm hug and flows back to her people.

I then look down, and I am so happy, ecstatic! I am wearing my black Madonna sweatshirt from her last tour! In Italy? Who cares – Madonna and I are friends.

So, if you ever can’t get a hold of me – you will know why. Don’t ask questions, I am not permitted to say.

Now, if only I could transfer my photographic memory into another dimension . . . I am working on it.

Settle in and break through

My head is buzzing. I am not sure why my head is buzzing – I think I need to exercise. I will, soon. I also have three projects roaming around and I have made progress on two of them – I think that’s good. Tiny, fun, fruitful, bouncing bits of energy.

So, I decided to stick with my poetry class.  This could be scary or not scary at all. I think it is my perception.

This is when a writer asks, “What is it you really want to say?” What I really want to say, truly I can’t say here. What that is? You can ask me later.

I met up with one of my best friends for 20-years out-of-the-blue yesterday – Sarah’s style.  Absolutely wonderful to see her. So great to think of our history, our friendship, and how much I truly adore her.

Hmm . . . I am having a bit of survivor’s guilt I think. Yet – I work hard every day and yet fuck-ups happen.

There is this young girl that follows my blog, and she isn’t doing well. She is having to deal with too much at her age. It’s like I want to press rewind, let’s slowly step backward and see where and what we can do. Reverse the train before it truly derails. She can do it. I know she can. That strength is there. Focus. Settle.

Personally, I think everyone should go to Minnesota, and I feel extremely fortunate that I was born in a particular space, proximity, and time to the University of Minnesota. That I was well enough for years, giving and allowing for the time it took to map the human genome and finally finding the location for the CF gene in 1989. I remember my doctor was ecstatic trying to explain to me how I should be as well.

Then when I started to need real antibiotics, heavy duty ones, that they (well especially one), was available and came out 1-2 years prior.

That I recognized at the age of five or six that in order to survive, I needed to exercise. That this would be necessary.  That while going to the clinic over the years, and when I used to see kids in the clinic, chest rounded, skinny arms and legs – I mean legs as thin as their arms, and bloated tummies, I didn’t want to be that. They were just so thin . . . Perhaps, it was vanity or maybe it was fear, probably both.

While thinking about all of this just briefly, I made a decision that this year was to move forward. One strong step in front of the other – and that’s it.

I will step into fear and I will step into strength.

I will also fuck up. I mean in this elaborate orchestration of treatments and medications, I am not perfect.

I forget to bring a medication here and there. I take most of my vitamins daily. The ones I chose not to, are ones I added myself.

Sometimes I have forgotten to recharge my rechargeable air compressor and I sometimes my medication is cut short, just like 5-minutes but it is 5 minutes. I truly have only done this three times, but it could always happen.

I reuse some of my neb cups (I call them particles, there is a history to that), more than one day. I have particles coming out of my ears and the rotation is nuts.

Beyond that, I am pretty on-par.I do about 97% of what I am supposed to do, in an exact way, order, and amount that I am supposed to do them. But, I am not perfect. I am human, and that fudge-factor could add-up in the future, but I try my BEST.

I experiment and I don’t tell my doctors until I have more results. As doctor Warwick used to say, “The thing about patients with CF is that they’re good scientists,” he said. “They always experiment.” – “The Bell Curve”

For better or worse, I will continue to experiment.

I will step into fear and I will step into strength.

Mary Oliver died the other day. One of my all-time favorite poets. She made words easy on the eyes, they found their way inside and settled warmly and they became friends within you – something to aspire to.

Three Things To Remember

As long as you’re dancing, you can
break the rules.

Sometimes breaking the rules is just
extending the rules.

Sometimes there are no rules.

– Mary Oliver

Article with Dr. Warwick highlighted: https://www.newyorker.com/magazine/2004/12/06/the-bell-curve

The Artist

I am reading two books:

Becoming by Michelle Obama, of course.

And a little fluff – and yet not fluff. It’s actually quite interesting: The Most Beautiful: My Life with Prince – Mayte Garcia, Prince’s first wife.

In the book, Mayte writes: “We shared a common belief that whatever you’re passionate about, you should learn about it, work on it, do it – just let it go and let it be.”

A true artist.
I miss Prince.
I am going to rest on that for tonight.

Silliness

“Take on step off a hundred foot pole.” It means, can’t rest at your success. Or your failure. “I have written something wonderful.” Good, but it is a new moment. Write something else. – Natalie Goldberg, Writing Down the Bones

I have written anything yet this New Year. I needed a rest. I needed to switch over and let go. I have done a lot of sorting, rearranging and tossing in two closets nonetheless. I reexamined my finances, upped some of the principles, and looked at everything as a whole.

I believe every year will be and is better than the last. Why I believe this, I have no idea. I try and take everything that I learned and hold it in my hand with the best intentions. I try and take each step and each thought, move forward and am just blessed to be here.

I want to take note of the passing of a 27 year old CF girl, Lea, a few days before Christmas. Her best friend Tiffany, is a huge organ donor advocate, as she received a double lung transplant 2 years ago, and is still doing well. She broke the news a couple weeks ago, as they were like sisters. They wore those special masks around each other to protect themselves. Lea seemed to be a very special person and a huge loss to many. Hugs.

It’s a bitch and a half. I still firmly believe that no one should have CF children if at all preventable.

I, myself, feel really good. That neti pot is awesome. I have been coughing so much less – I actually have more energy. I am almost tempting to say that I feel as if I did 3-5 years ago. Meaning, when I do something, like jump or push-us or back bends, or strike a pose – I don’t cough each time. Yesterday, I coughed 50% percent less if not more, or less? Today, I didn’t do my treadmill in the morning, so I coughed more than normal but less than I did prior to starting the neti pot.

I almost had a dream of running. I mean, I started to visualize myself running and I thought “Hmmm . . .” But, my knees are horrible. I can dash instead.

Everyone I know is writing. All my writer friends are writing. They are conjuring up stories and writing, redrafting – I haven’t done shit since school. I am debating which class to take in a couple weeks. I am signed up for both. One is composition related and could accelerate my learning in that direction. The other is in poetry and my friend is taking it, and we laugh all the time. I am actually frighten to take the poetry class, because the prof is something serious. I am contemplating all my writing abilities to be honest. Oh well. Sometimes you just write crap. My right and left brain are playing tug-of-war, will see.

I had a patient today where he went on that antibiotic I told you about, the one I didn’t want to go on and decided not to take. He had a course of it for 8 days only and the drug damaged his Achilles. He didn’t have to have surgery but has been in a brace for a year. I could not believe what I was hearing, just shaking my head.

After hearing that Achilles story, I am going to tell my Dr. in MN. She will probably just shake her head in agreement and smile at me. But, when I originally thought about it, Mary Jo popped into my head, not my current doctor, Dr. Billings.

Mary Jo was my nurse practitioner for many years. Actually my mom did not like her and at one point lied that I could not see her anymore because of insurance purposes. As an adult, I know now that insurances don’t give two shits about which NP you see. I believe my mom was jealous because I looked up to Mary Jo. Also, Mary Jo was an educated, well-spoken woman. I wonder even perhaps my mom didn’t like her so much because she didn’t play into my mom’s disparities and meanderings, to say it nicely.

Two or three years later, during that first year on my own, I went to clinic and Mary Jo walked in. I stood there in shock and gave her a huge hug. I remember saying, “I thought I couldn’t see you because of insurances.” She looked at me, and shook her head and narrowed her eyes in confusion. “No . . .” Then, I spilled the beans of my trip of north and back.

Mary Jo was her own star of wonder – a woman I admired. Laughter that gave into nothing and a soul that just knew. She had crohn’s and went into organ failure more than once, eventually passing from complications. Whenever someone brings up her name, she is always spoken of fondly and she has a dedication about her at the University.

One such memory of Mary Jo, of many, was at CF camp when I was 14. During the two-weeks, we had a sex education segment one such evening.

I remember she and the other nurses tossed condoms on this large rectangular table that the eight of us all sat at. We bashfully reached for the condoms, and looked down at our own bananas. They must had been very green. We each ripped open our condoms, and slowly unrolled the condom over our bananas. I seem to remember it was not all that easy, and a few condoms may have flung. Not just mine. The nurses helped us steady our bananas as we pulled them down, and when we were done, we held them up smiling with a mix of humility and silliness.

That was all Mary Jo.

Nutshell

Yesterday I did my repeat PFT and it went up 5%! It actually went up 7%, but I am not sure if that is accurate. I am never sure if any of my PFTs are accurate, but that is the score, recorded in time.

I had made the decision that if my lung scores stayed the same or went down, combined with my new culture results, I would let MN make the decision to go in-house or not. I was leaning to be admitted because I can’t really mess around at my age as I need to keep my lung scores stable. The wheels were turning and I was already planning when I would go in, how long I would be out, so forth.

I am very stubborn so it is hard for me to say, “I’m throwing in the towel.” I have to think realistically and I don’t have the luxury to do be too stubborn or just plain stupid. Stupid I am telling you.

I hear Mary Jo, my NP that passed a few years ago, telling me when I was 14 or 15 . . . “You are going to get yourself into trouble one day, Tessa.” She was almost clenching her mouth, dead-set focused on my eyes with her hands on her hips, and looking fierce even with her 100lb frame.

So – what I have done: everything I used to do once/day, I do twice/day, and what I used to do twice/day, I do three. I have done the treadmill every day, and I just started using the neti pot.

A patient last week really encouraged me to try it. I didn’t say what I had, but he has been feeling so much better doing it, he thought I should give it a try. It is a funny gizmo, but it actually feels so good to get water in my system. In my sinuses and then drains into my lungs. It is so dehydrated in there. It is like taking the drink of water you haven’t had half the morning and it tastes so good.

That’s the whole problem with CF in a nutshell, not enough water. It is a like a desert in there. That’s why CFers do so many nebs. My poor lungs are just trying to do the best they can with a system that is half functional, using half its usable parts, less for some.

Is this manageable? It is, but to honest some days barely. It is. I shouldn’t say that. I am feeling stronger and this neti pot is really helping, combined with the 5,000 other things. But, I was ten minutes late to my PFT appt because of traffic and I just said, “I give up.” Then I kind of chuckled and said, “Fuck it.” I just thought I will go anyway because I need a new culture and see what happens. The next shuttle was actually faster than normal and they took me of course, because it happens to so many people.

I am so relieved that I don’t have to be admitted today. But when I do, it isn’t the end of the world either. I have to stick that in my thick skull over and over.

So, the course – I keep doing what I am doing. It is working, so keep at it. I was thinking of doing acupuncture again, but decided no. It is expensive and it is motionless. It has benefits – without a doubt. Instead, I want to buy some snow shoes. I actually like the snow, when it is pretty, how it absorbs all the sounds and reminds us not just that there are seasons but there are reasons too.

I have this magical thinking that I can do things that seem and may be impossible, and I may not be able to actually do them in real life. But if I think I can, and I dream I can – then maybe I will?

Pesto

I started watching this four-part series on Netflix last night: “Salt, Fat, Acid, Heat.” I heard the creator in an interview on MPR this last week and how she was talking about the history of olive oil and how Americans really don’t know very much about it. How olive oil is truly supposed to taste, and how our taste buds are not sharpened, or honed into when the oils begin to age and become rancid.

There was the cutest Italian woman showing the host how to truly make pesto with the back drop in Italy’s beautiful landscape. The sounds, textures, sights, and tastes . . . oh my god I thought, this is memorizing, I want to try and make pesto like this, ground in a mortar. Did you know it start with pine nuts? However, I am not sure if America has one of the cheeses that the Italians do though.

Here is this older Italian woman passing her gift how to truly make pesto to her family and now in this special.

I woke up this morning and close to my first thought was – everyone has gifts to give; innate gifts that are at our finger tips. We are born with these, unbeknownst to us or not. I think many of us are aware of these gifts we may have, but don’t believe they are gifts and often don’t provide adequate space for them in our lives. Some of us might and I have a feeling some of us don’t as much.

I just thought, if we started out from a place, or a space, a word better suited, that we know we have a gift and some of us multiple gifts; and given that, the thought process inside out has its own trajectory that almost cannot be touched.

Also a friend of mine told me a magical story she experienced first-hand experienced yesterday. A truly magical story. And I am sorry, I cannot relay that story because it is her story and not mine. Her mission is to curate that from her own innate gifts.

I think the magical story interlaced with the pesto created these thoughts this morning.

More magic, more gifts: I want to plug this YA book called Five Feet Apart by Rachel Lippincott. An actual book about two CFers. It is number 9 on the New York Times best sellers list this week, and a true movie has been made, due out March 2019.

Claire Wineland, whom has passed, in one of her many gifts consulted for the accuracy while the movie was in production; such a bright star.

Cystic Fibrosis is not known like some other diseases, and it needs more awareness. Many people have heard of it, but not much more than that unless they know of someone whom has CF.

I am not sure if the book or the movie would be good for my head, as I am hesitant on both accounts – but both is needed in the CF awareness space.

So, these are my thoughts this morning, and now I must switch-over and give whatever I may have into the interesting and challenging world of English and writing research. It is fun stuff, truly. I am not joking.

Tater-tot hot dish

I grew up around men with rough and course hands from endless days of gripping and pounding. Calluses formed and smoothed over their palms and inside of their fingers protecting their beaten skin, making them look larger than they were. Tiny cuts in and around the bends of their fingers, some bright red from moments before, others darker from earlier in the week. Dirt and oil jammed underneath their nails that needed an extra washing and scrub before dinner.

These were the men that I knew. They worked hard. They knew what hard was and didn’t shy from it.

“I ate an Arby’s roast beef sandwich the other day. I don’t know if it was all the way cooked through.”

“Did you get sick?” I asked.

My friend’s dad, Louie, shrugged his shoulders and gave a half-chuckle. “Nooo . . . it went down alright, but I think I will take a break from them for a while.”

“I just love Arby’s roast beef sandwiches. A good price too given Louie and I go and have two for $4 on Tuesdays,” says Julie his wife.

“You know what I tell my grandkids, you better pick something before it picks you,” Louie says.

I nod. “You are right.”

“Do you think I said when I was growing up that I wanted to work for a milk company in the freezer my whole working life; 40 years – . No I just fell into it after the service. It was a job and it paid and then Julie and I got married and then the kids. So I tell them, pick something before it picks you; we all have to do something to make a livin.” He says with a smile that builds into a chuckle. His two hands shoved into his jeans given to him by his daughter.

“Debbie knows how to pick’em and find’em.” He smiles again.

I can tell he is happy.

I grew up with my friend Debbie shoveling our neighbors’ driveways not because they asked, but because it needed shoveling.

I grew up eating potato hot dishes, tater-tot hot dishes, tuna-noodle hot dish, baked potatoes, scalloped potatoes, mashed potatoes, any-old potato with milk, cream, and butter that can be mixed-in or placed on top. A little salt and a little pepper, nothing else.

I grew up eating cream of chipped-beef on toast, kind of gross not going to lie. Cream of tuna on toast, anything on toast that you can mix cream and meat in.

Midwesterners breakdown boxes when they are done with them. You fold and bend them into smaller and smaller shapes, shove them into another box. It is just so, and I never met anyone that didn’t.

Midwesterners asked how you are doing and wait for an answer.

We smile and greet each other, nod our heads if our hands are full.

Not that long ago I was at the clinic and the at least five people were waiting for the elevator. It stops and opens, and no one moves. A man says to another, you were here first, the person replies, “No you were.” No one is moving – waiting for whomever was there first to enter the elevator.

I am thinking we are going to miss our elevator if someone doesn’t move. Finally someone does a half step and then a full-step and we all enter with smiles on our faces. “You should go, you have those crutches.”

“Oh, I have these for a while. My foot has been a mess for months now.”

“I am so sorry. How did that happen?”

And they stop and listen.

The elevator door opens and I exit.

Midwesterners or maybe more Minnesotans do not want to offend. It is this unwritten cultural way of being. We don’t want to hurt anyone or offend, but more offend. When asked an opinion you can get an array of answers and some “hums” and way-word glances to the left and right; a smile, a chuckle, or just an avoidance altogether. You may get an “interesting, or maybe . . . have you thought of this . . . “never saying they didn’t like what you said or disagreed with what you did, just an alternative to the situation.

It is hard to get an opinion at times unless it is your real friends and you can tell each other the truth. It still may get a hum or a slight uncomfortable smile.

I met a woman at the airport this last trip. She is from Boston and she met her husband in Boston but he is from Minnesota. She works for a company based in Minnesota and Boston so she flies a lot back-and-forth. She has had a learning curve with her husband’s family. She was super nice and we exchanged numbers.

I said to pay attention when someone wants you to do something, but won’t tell you straight out. She looks at me in confusion.

You are at a party and the host wants to move into another room. Instead of saying, “Let’s move into the living room.” He will instead say, “How about we move into the living room?” A question never a statement. This avoids offending someone or coming off rude.

“I will have to remember that,” she says.

A Minnesota good-bye: start saying good-bye in person or one the phone 5-10 minutes before you have to leave or get off the phone.

“I have to get going soon.”

“Oh, okay, did I tell you about Susan?”

“Susan, our old neighbor.”

“No, I don’t think so.”

“Oh yeah, well she and her husband had to sell their house because he lost his job and she didn’t know what to do, so they are renting an apartment now.”

“Oh, that’s awful. When did he lose his job?”

“About two months ago . . . .” You get the point.

A sure tell sign you are in Minnesota, the shuttle driver talks to you.

“Where you going?”

“Ah, yeah, my uncle has had a place up in the Duluth area for ten years now, right on the outer banks there where the wind comes off superior. Real nice, but that wind will knock you off your feet especially if your standing up on them.”

Oh lord.

“My name is Bob.” He shakes my hand. My Dad’s name is Bob too.

We love our picnics, our lakes, fishing, and grilling; like others. But it is what we have. We don’t have none of them oceans, or surfing, or anything. Just a boat and a nice summer day, as long as you bring your mosquito repellant.

We start work early and work late. It is the farmer lineage in us.

My parents always had a ford or Chevy car or truck. That was it. I remember one time I got in my car and I think I accelerated hard when I backed up – not sure why except I think I really wanted to leave. The steering wheel was turned a little to the left, so when I backed up, it swung and hit my dad’s truck in his bumper. I got out and the bumper was bent out, almost detached from my dad’s truck. The truck looked alright, but the bumper was almost bent not 90 degrees, but a good 45 degrees.

I was so scared as my dad was inside downstairs. I started pacing back and forth, back and forth and I finally said, “Dad. . . “He came out and face got gruff. “What happened?” I kind of said what happened, but he looked at me like, “How did you do that?”

“Not sure.”

Being who he was, he backed up his truck angling it just right to flatten out the bumper against one of the large trees in our front yard. He slowly put it in reverse and bent it back enough where it was straighter, not perfect, and it didn’t crack in half. “Oops.” A strike against me for sure.

Midwesterners – hard work, long hours, not afraid to pick up and help out.

How am I doing? Hard work, long hours, and keep going at it.

How are you?

Keep going at it.

Watch this link: super funny.

Dwayne and Mom:

https://youtu.be/i_5ML-OIk58

Until We Spoke

This afternoon I pushed the button down on my inhaler canister. It seemed light. I looked at the dosages, “0”.

I plugged in my computer knowing the battery juice was low while trying to get ahead of the pages I have to read this weekend. After a good 45 minutes, I turned on my computer and realized I did not turn on the power bar to which the computer is plugged-in to.

I remembered to bring all my drugs today, albeit one was empty. My ID badge for work; I got a replacement the other day. And my head for the most part.

Holiday weeks can throw you off.

One of my favorite quotes from one of my favorite books. I usually don’t quote things – but this one is worth it:

“The mind and body are like this. The body alone can do nothing for itself; it is a like a log unable to move or do anything by itself except to become subject to impermanence, decay, and death. The mind can do nothing without support of the body. When we mindfully watch both the body and mind, we can see how many wonderful things they do together.” – Bhante Gunaratana, Mindfulness in Plain English

Let me tell you the truth about something, something I don’t speak about much.

Death looms. It is a constant.

We ignore it, try to go around it, jump over, around it, chase it, and run circles around it. We back away from it. We may run away from it. We stare at it as if it was this thing. We shut eyes and hope it all goes away. This is not sadness or depression. It is just the truth. We talk a good talk. We smile, and a lot us have this little off-beat sense of humor.

It is almost brought up in some form in every clinic visit. It is in stats mostly. But it is in research as well.

Ann spoke at the North American CF Conference. She said she will never do it again. It wasn’t what she had to speak about it, because she said that part was easy.

She spoke at a podium for three sessions. Each session held 300 people. She had a woman from John Hopkins challenge her each session. And as each session progressed so did the woman’s aggression towards Ann.

I asked, “What did you do?”

“I was a professional. I answered her calmly and to the point.”

She later said that if she would had known the stats of John Hopkins compared to MN she would had nipped it in the bud right away. Ann said that MN’s average FEV1 (PFT measure) is 109% for pediatrics, below the age of twelve. John Hopkins FEV1 was 89%.

“That’s a full 20%. They still have kids die and we haven’t had kids die in years. And here she is trying to tell me that they have a better method of performing manual percussion therapy than we do.”

If a brain could produce steam.

I have these thoughts and I mentioned it to my professor, as it is related in the aspect of all research, writing, and health, whatever it may be.

Researchers often stand behind their research. The Institutions in which represent these researchers stand behind them. They do this because the Institutions invested the Institutions’ reputation, and physicians/researchers as well. They invested money, time, thought processes in the research, standards of care, publications, notoriety, and one could say ego as well.

They are not going to give that all up and say “Hey – you are right.” Let’s scrap all that and give you all the credit. They won’t do it even if they know the other guy is right, unless, maybe, they are pressed hard and it save lives. This is why second and third opinions are always necessary.

So – what does one do with all this?

A long, long time ago I subtracted all the words that I didn’t like out of my vocabulary. The ones that related to my health, and I only focused on the ones I liked. This was in my teens, late teens.

I will regress for a moment here. I had a “weight problem” per se in my teens. Puberty hit and bam, bam, bam, the pounds kept coming on like doe puffing up and out in the oven. I was like “Whoa, what is this?”

So, I started to restrict my food and it got messy for a while. I lost weight. It was bad. They wanted me at a certain number and I said, “You want fat.” They said, “No, weight.” We went back and forth as teenagers and adults do. I decided if they wanted weight they could have muscle instead of fat. It took about a year, but I got the weight back on and they backed off.

Then, I got it in my head that I didn’t like other words. I took death and put in breath; strong vs. weak. Simple word changes. I did a bunch of them. I liked my new words much better than the shabby old ones.

I learned that the words that went around in my head, bounced, and echoed between my ears, made a big difference.

Circling back:

“The body alone can do nothing for itself.” Got it.

“The mind can do nothing without support of the body.” Got it. Got it.

“When we mindfully watch both the body and mind, we can see how many wonderful things they do together.”

Sigh.

The air pushes away the doom,
And makes room, for the life and love
That were missing,
All those years,
That we never knew,
Until we spoke them – aloud.
What can one say now? The only one
That says it all –
Thank you.