Claire Wineland

Claire Wineland: “Death is Inevitable. Living a life we can be proud of is something we can control.”

I had been waiting for an update.  I had never met Claire for obvious reasons, but she touched your heart as if you already knew her, as if you were friends.

She had been through so much more than I can imagine and yet her spirit radiated.

She was featured in People magazine last year, CNN, among various other media outlets.  So many people from around the world knew her and loved her. If you youtube her she has tons of videos that will sure make you laugh, as she always did.

Lung transplants are one of the most difficult organs for the body to accept. It is possible – it is always possible, and Claire gave it her best.

The latest post from Claire’s FB page:

Last night at 6:00pm, Claire Wineland our inspirational founder passed away. She was not in any pain and the medical staff said it was the most peaceful passing they had ever witnessed.

She was surrounded by love and with her mother Melissa Yeager and father John Wineland; they saw her into this world for her first breath and were with her for her last.

She suffered a massive stroke on August 26th after a successful double lung transplant. The stroke was caused by a blood clot. After a week of intensive care and various life saving procedures, it became clear that it was Claire’s time to go.

Yesterday, Claire’s family and a few very close friends came to say their final farewells and offer their support to the family.

In Claire fashion, she is an organ donor. Claire’s remarkable family were so happy for the other families that were now getting the calls that the organ they had long been waiting for was now available for transplant. They had been on the receiving end of that call just one short week ago.

We know Claire was loved all over the world. Your prayers, support and encouraging words, have been a huge source of strength for her and her family. Thank you from the bottom of our hearts for your massive amazing out pouring of love.

We are asking to please give the family privacy at this time. They have so generously shared their lovely Claire’s remarkable journey with us all, but now is the time to give them some peace from the public spotlight. They will emerge eventually, but please give them the time to come to terms with their family member’s passing.

In lieu of flowers, the family is asking for donations to be made to Claire’s foundation.

Claire’s Place Foundation is committed to upholding Claire’s legacy by assisting Cystic Fibrosis families in need.

In the words of our precious founder Claire Wineland: “Death is Inevitable. Living a life we can be proud of is something we can control.”

You sure made the whole world proud of you Claire!

She was one red hot spark of inspiration and joy, wasn’t she? Rest In Peace Sweet Warrior Claire, we will continue where you left off.

Hug your loved ones close,
Laura

Laura McHolm
Chairman of the Board
Claire’s Place Foundation

#CF #CysticFibrosis #ClaireWineland Claire Wineland #Transplant #LungTransplant #LIvingalifeyoucanbeproudof #MakingaDifference Claire Wineland, Love, Songs, and Updates Page #Inspiration #CureCF

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Never Give up and Never Give in

I love to travel, although I hate to pack.

I love traveling because a person has a chance for reflection. A person also has a chance to compare and contrast, putting all the nuggets in your back pocket; the good, bad, and the bloody other, whatever that may be.

I take note of the infrastructure, what the area has available and has been made available to its communities, areas that could use a nudge and areas that are thriving. And then why or why not?

Detroit, Michigan is a tough place.

First – I believe and have come to the conclusion living in the Midwest is a harder than living on the east coast.

Pros of living on the east coast:

Competition
Accessibility
Transit
Investment
Technology
Landscape

Cons:
Cost of living

The thing is, even though the cost of living, especially with housing can be quite more expensive, there is a chance to save in other areas. For instance, transportation. There are options in Massachusetts.

Midwest:
You have to have a good car. The Midwest is so far spread out, without a vehicle, it limits possible employment prospects. You can be carless, but you have to be set up just so.

The winters are long and harsh. You can freeze to death without proper preparation. I used to have a gas can, jumper cables, tire jack, extra tire, first aid kit, a blanket, mitts, hat, and maybe boots if I am driving away from the city. You needed AAA or some other service if your car clunks out in the cold, hit a deer, slide into the ditch, etc. And if you get stuck out there, you get stuck out there. Thank goodness for cellphones.

I have also noticed, many of my Midwest friends have one job alone. A couple of people I know have two jobs, but mostly one. It seems as if many jobs are M-F or schedules designed in such a way that it makes it difficult to have a second job if one needed to have one. This puts strain and stress on upward mobility. Not saying you want to have two jobs, but it does provide cushion if needed.

In the Boston area, I know countless individuals that have more than one job, not just in the medical sector. One could say because of the cost of living – yes that is true. However, once one facility offers a schedule, including the opportunity to work at home full or part-time, which then allows for more flexibility; soon it catches wind. Then another facility may then offer the same or better schedule because of competition. And sometimes, it is just good to have that extra job in case of an emergency, vacation money, or stack and save for your home and children. It provides opportunity and competition.

All of this connects to your overall well-being, mental and physical.

So this is what I learned about Detroit – it needs help. It is left up to state representatives and local governments.

Here is a list:
1. They do not recycle. It took me forever to find a plastic recycling receptacle at the airport. I found one, in the corner. One, just one.

2. They have landfills, they just keep mounting them. The trucks are just stacking up on a gigantic hill. Apparently, my friend Rebecca passed along to me that the city was going to create a golf course or the possibility of winter sport activities on the landfill. However, it can explode. The landfill needs to be properly vented in the decomposing process and if not, it can explode. So, umm . . . no.

3. During the recession, they cut back in the schools. However, we are no longer in a recession as the Big 3 in the area: Ford, GMC, and Chrysler are doing quite well these days. They create jobs and opportunity in the area, but still schools run short on staff. The school district near my friend only have one school nurse for four schools. I repeat: 1 school nurse for 4 schools. So, in order to dispense medication to the students, many parents have to come to school to give their child or children their medication(s). Secretaries have been trained to administrate Epi-Pens in case of an allergic reaction, as they are also allowed to dispense OTC medications. I am sure there are tons rules and regulations to tightly fit their new drawn guidelines for their economic restraints/choices.

4. There is a severe lack of industry in the area. Employment prospects are limited to food service, auto, education, some banking, retail, some construction, public service, tradesmen, and that’s about it. Now, in downtown Detroit, there are probably more opportunities; however, the communities that surround Detroit, it is suburban sprawl with fast food chains and retail for miles upon miles. In Lincoln Park, the public library shares the same building as the police.

5. I will say – the Ford Museum was so fun. I loved it. It was timeless. It is worth the trip to Michigan alone. Michigan is the world headquarters for Ford and they have invested in the community. Check out America’s Innovation: https://www.thehenryford.org/visit/henry-ford-museum/

6. We also visited a tranquil park on the river.

I feel as if the community could be so much more and so much better, but it takes planning and investments in the government and private sectors. My friend told me that the previous governor create tax incentives for the film industry and soon the film industry started to invest in the area. However, the next governor, rolled-back that tax incentives and the film industry left.

It is hard to see when people lose thousands upon thousands of dollars in their homes’ worth. It is hard when you see people struggle and if there was a solid infrastructure, people wouldn’t have to struggle so much. Every state and community has it tough points in history but they reinvent. They invest and bring in industries that continue the growth in the community.

Where are these leaders in the Detroit, Michigan area? Moreover, where are the leaders in other cities and communities in the United States? There are many communities that need help. It is not just a Detroit problem.

You may think – am I running for office? Well, not today.

It is hard to see people struggle and it is hard to see that lovely pollution haze across the Detroit area sky.

But, MN is really not that different during the summer months. The landscape traps in the pollution and the humidity saturates the air, literally making the air heavy and hard to breathe. It is one main reason I left the Midwest. That last year in MN I developed an infection December/January, April, June/July, and September. Every time one cleared, another grew. It was terrible. Then – when I visited a coast – I could take a deep breath and not cough. Iceland is still the best to breathe.

Compare and contrast.
Reflection and motivation.
Create and recreate.
Never give up and never give in.

Note: Rebecca, please feel free to fact check me. 🙂

Sub-plot

I am writing a novel, or so I say that I am. I am trying. I am truly trying. Will it go anywhere? I do not know. But, I believe I have a story, cross fingers.

I need to create a sub-plot or more than one sub-plot. That’s what I am doing here, buying time while my mind is trying to find its way.

I am also working on this little Thank you project that I came up with one day. It is just something I want to do. More to come later. What makes me happy about this, it is something achievable.

People often ask me about my non-profit. How is that going? Well, it isn’t. I would like it to go, but I need people’s time. I have an idea, and I believe I could execute Part of me wants to say – “Hey, I have this idea – run with it and we will talk numbers.” If interested, please contact me.

Part of me thinks I have too many ideas and not enough time to get them done. I think I am may be the idea creator, like the inventor that tinkers, but it a whole another thing to make it happen. It is a slow-going machine. Nonetheless, I will never give up, and I continue to talk to people about them. One just never knows.

It always goes back to writing though, and it also goes back to traveling. I spoke to a patient the other day and he flew to Anchorage, Alaska and did an Alaskan cruise down to Vancouver. I want to do this – or something of this nature. I think it’s my next trip. I want to put it on the calendar. It is calling me.

Still need a sub-plot. I am thinking. Sometimes I need to sit here and start mapping out ideas.

Today, I got checked for a lump on the right side/back side of me, waist level. It is more than likely another a lipoma as it feels the same as the other two or three I have on my left arm. They feel like tiny marbles under the skin, like a half of a centimeter, if that. The rad didn’t need any additional imaging. I will wait for the final report.

This year I am supposed to get a mammogram because it’s time, and a colonoscopy. I have colon cancer in my family and CF patients are screened at age 40 years old because of the digestive enzymes and scarring in our intestines.

I personally get an ultrasound screening for my pancreas, bile ducts, and liver every 2-3 years because CF patients have a supposedly higher probability of pancreas cancer and other aliments because of the non-functioning pancreas. Mine is textbook CF panc. It is enlarged and has been for eons.

Given all of that – I will continue to plan my trips. I will continue to work on my writing and projects, and I will have back-up plans as well.

I am lucky to be here. I feel as if I have stolen 40 years of my life. Modern medicine has kept me alive.

And even though one of these wonderful modern medicines have kept me alive, it also adds one hour to my treatments every other month. But how can one complain. Twenty years ago CFers didn’t have the option to take it, and patients died that had this particular bacterial strain. It has changed the landscape.

When I take it, I often sigh out of thankfulness and yet – the time. But, I can’t complain. If you cut corners, you cut real life time. And that is on me and no one else.

I have stolen 40 years, yet I have worked for them.

I need to get a trip on the calendar. And what about that sub-plot? I think I have an idea.

All that is.

There is a lot of luck in this game.
There is a lot of will in this game.

I was derailed recently, very recently. Prednisone is a doozy. It hiked my white blood count to 22K, and that is after a week of getting better and feeling better. Normal range 5-10k. We had to bomb it with another round of oral antibiotics, increasing the dose as well. It brought it down and it worked.

My MN doc played the odds. I have three reoccurring bugs; two of which have good oral or nebulizer antibiotic options. The third is treated most effectively with IVs. My doc hoped with some luck that if we take out the two as much as we can, it will bring down the third as well, or at least enough where the body can take over and recover. It worked and I am thankful. I didn’t have to be thrown in the clinker this time. If I had to, I would have.

The body is amazing. I don’t understand it half the time.

There is science and there is will.

I know there are intentions. I know there is focus. I know that if you focus on the good words and the goodness in life, the good words and goodness will appear.

As I literally spend 24-hours a day focusing on willing myself to be healthy physically with the treatments and the drugs, and then thinking positively mentally.

Then, it is interesting, there is this core-like feeling that wants to be alive. I want to be here. I want to create and perhaps write something of worth one day.

I want to see and do many more things. I don’t know if I will be able to do some of these things, but I am going to try. I am going to try and will myself to do these things and to be there.

The thing is no matter by choice or not, I hear about other CFers. I hear good stories, but often times I hear more of their struggles and the really sad stories. It is Okay, it is just that they are often much younger than I and that makes it much harder.

So all of what life is and offers – the imperfections and celebrations that go click, click, click, and click over to the next day, week, month and year – I will continue to do my best.

There is a lot of luck in this game.
There is a lot of will in this game.

Ah – thank you

I don’t really understand many things in life. Sometimes I think I do, and then I don’t.

A very good friend of mine, during one and many of our discussions talk about how the best place is to start is by saying, “I don’t know anything.”

Therefore, your ego is checked and the learning can begin.

There are often times that I wish I was never born with CF. Not that I wish that I wasn’t born, but that I wish I never knew the name. There is no one in my family that has it, that is known. I just happen to have it.

I am not taking away from all the life lessons and ways it has brought goodness to my life. I just sometimes wish I never knew the name.

Every day I put forth the energy for today’s tasks. I am also always reaching to gather my strength like gathering strawberries or blueberries, picking them off the branch and stacking them high in my basket.

Then ever-so-often, someone hands you things they have learned or resources they have fallen upon. They reach over and dropped a few strawberries in your basket.

I am often in shock or in disbelief when given such gifts, as this happens often. My coping mechanism, as the shock can come in good or bad forms, can take me days, weeks, months, sometimes years to take footing. I believe part of that is life is extremely close and real. I have exact and direct tasks I must do today, each day, no matter what is going on in the world. I have to focus and put my head in the right space and energy to do so.

I was given such gifts yesterday from my social worker. She had multiple resources to help with the medication costs and how things have and are changing better for the patient. How competition is benefiting the patient. “One company does it, why don’t you have this program for your patients.”

She gave me a very detailed chart of the high-cost meds and the programs for them. Before I left, I filled-out this form that took some time and they made sure it was dotted correctly before I left.

We discussed all sorts of long-term goals for health and financial health and resources to contact for CF patients, and how I must plan for retirement if I am not already.

There are so many thank yous that I could say to people that pretty much the only word I would be saying from here on out would be “thank you.”

There are countless tiny kindnesses and kindnesses in larger forms that are never, and I mean never lost on me. I take note, and I place them in my basket as I go along too.

 

 

 

May is CF awareness month – welcome to becoming aware, five

Before this month closes, because I am not sure if I will have the brain cells in the next few days to write – I have to, have to, have to spotlight Josh Llewellyn-Jones, a 30 year old CFer that lives in Wales.

The first time I saw him, I could not believe he had CF. Pic curtesy of Instagram.

Image result for josh llewellyn jones cystic fibrosis pics

I came upon this CF podcast called “Making it Matter” by Gunnar Esiason and noticed this seemingly attractive young man with an English accent and how he contributed exercise being at the forefront of his life.

I began to listen closely to his training schedule for this 24 hour CF challenge that he had coming up, where he would exercise for 24 hours.

No doubt, he is a fierce athlete. He grew up playing rugby among other sports, or he calls “sport.” How he stopped doing his “therapies” at age eleven, and instead played sport.

I have always believed that exercise had more or as equally contribute to my health as my treatments. But, here is this guy, who must have had forward-thinking parents to allow him to not do his therapies, my parents never would have. He is proof that exercise is key.

Side note: when you are not feeling well, exercise can be very difficult.

This is the thing – no matter what – you have to keep moving. Even if it is a stroll, to a slow walk, to a faster pace walk – new cells are generated and created when you exercise.

It is tough, it is that resistance in life. Right now, I still have to do my treadmill. I would much rather sit on this couch and not do my treadmill. Right now, just to say, I am resting since I just ate. My side would kill me if I got on the treadmill this second.

But no matter what, treadmill or not, I most definitely should do my treadmill. It is best for me. And even though, I may not feel it today, or see this imaginary result today, I still need to do it.

So – at times, when I think I can’t do it, I review this video below. Josh says what he does to warm-up and train for his 24 hour challenge about 7 minutes in. The entire half hour is worth a listen.

Another note – Josh’s 24 hour challenge took place last year and he succeeded. He had trainers of course, and had put the time and effort in, but he did it. This year, he is doing another challenge.

He has the cutest little followers, CF warriors as he calls them. There are three year old’s, five year old’s, and ten year old’s on up working hard, because they see Josh working hard.

Follow him on FB, Instagram, etc. He will motivate you, or you can just admire his good looks.

Have a listen, at least 7 minutes in.

May is CF awareness month – welcome to becoming aware, four

Organ donation and becoming an organ donor – Please become one if you haven’t already!

Organ transplant – two words that sit in the back of many if not most CFers’ minds.

There are a few people in my life that inspire me and one of them is Claire Wineland.

This girl has gone through twenty times more in half the years than me. She has made the critical decision to have a lung transplant or at least attempt to get on the list.

I am not going to explain Claire, as I think she does it best herself.  A quote from her most recent post:

“Normally I do not post pictures of me doing my treatments because people like to feed off health drama but this one felt special to me. It was taken on the first trip down to San Diego for the first stage of the lung transplant evaluation debacle. We were so worn out and overwhelmed and just sorta walked around feeling like we wanted to cry and not totally understanding why. I feel very blessed to have so many people willing to go through this whole shit storm with me, it’s a miraculous part of humanity that we are willing to suffer along with someone to ease their burden. There is something tremendously powerful about being close to another person’s pain and letting them know you will go through it with them – i would have crumbled a million times over without the people I love. I’m just very grateful to those who are shouldering this burden with me.”

A very special girl, 21 years old.

#Clairewineland

#organdonation

Follow Claire on Instagram, Facebook, youtube, etc.

Here is a couple of her YouTube videos, the bottom one is her latest.

May is CF Awareness month – welcome to becoming aware, three

Philosophy:

I often ask myself and quite confused why some CFers are healthy and why some are not?

What is that each of us are doing so differently?

Is it because of their genotype?
Perspective?
Medications?
Care center?
Routine?

What is it?

To de-clutter the confusion, the genotype matters. I am not going to go into the thick science of it all; I have read lots on it and recently found a paper in the UK quite interesting how different proteins function in CFers.

To be clear cut: there are certain CF mutations that affect only the lungs and then some that affect both the lungs and pancreas. Then, in those two categories there are tons of variations. This is what scientists and researchers are consistently trying to figure out – the variations.

They generalize it in some form: how dependent are you on modern medicine to stay alive essentially. They broadly characterize it in severe, moderate, or low.

I have known CFers that have had to do their treatments
4 times a day (every 4 hours),
3 treatments,
2 treatments
1 treatment
And barely a treatment

I have heard of CFers doing their treatments 1 a day, 5 times a week. I am not sure what happens the other two days?

When I was 14 years old I had this wonderful opportunity to go to CF camp, the last CF camp, as it was shut down due to cross contamination. A friend of mine only had to take 6 enzymes per meal; I had to take 26 enzymes per meal. I was like “Hey – WTF” . . . before WTF existed.

I think there are some truths that must be taken into account.

Everyone, CF or not, has to move and keep moving.

My former doc for eons, Dr. Warwick, finely pointed out, “If you exercise or do your treatments adequately you don’t have the bacteria down in your lungs to begin with and you don’t have to worry about which antibiotics will or will not work.”

Airway clearance is key. Non-CF people have beautiful hydrated lungs, they wash away all the bacteria just like you are taking a hose to your dirty front step. Non-CF people’s lungs have beautiful proteins in their cells doing the job they were designed to do.

CFers, depending your mutation, have a tiny amount of water, some little, and some in between. It depends how much water you have to wash away the bacteria. If you don’t – the bacteria hangs around. Some of the proteins make it to the surface of our cells to do their job; some make it half-way, some don’t hardly leave the bottom of the cell. Exchange is limited and little water.

This is where the nebulizer treatments come into play – hydration. Then being smacked on your back or percussion therapy/vest treatment/whatever the hell works for you, is just pure force; literally smacking the shit out of you.

If you do the nebs and getting smacked enough, the bacteria doesn’t have a chance.

Movement, exercise, is similar to being smacked.

There are so many variations on what works for you, and your doctor is trying to find the right balance with the right medications in your neb to get the best effect.

There is tension in the effectiveness of your treatments and how well you feel. Sometimes you need to do more treatments or exercise, but you don’t have the energy.

This is where I think this becomes a mental game. You have to leap over this tension and change the way you think.

This is the everyday game.
Stead-force, steadfast, strength, stamina – whatever you want to call it.
There is a lot of laughter in there; a lot of tears. There is a lot of work. Work that I am not afraid of doing. There is a lot of energy. Some days, it is like dragging a boulder up hill.

It takes a lot of love, all around.

Care center philosophy –

In my POV, I find the east coast is like “Eh – do what you can and we’ll see what happens. We want you to feel good, but whatever works for you.”

In MN – “You will live to 80 years old and if you want to argue with me, go ahead. These are all the things we do to support you and we view everything with the cup flowing over. We will get you there.”

I bet if I visited a care center in the west coast, acupuncture would be in my standard of care. All the west coast myths and truths would probably come into play. Diet, yoga, all sorts of things I am sure would contribute to my new way of thinking.

I bet if I went to Europe, be a completely different philosophy.

I read what people do in different parts of the world, but it can be overwhelming so that is when you shut the computer off.

I want to point out – there is no winning in all of this. Winning, in a sense of winning over CF. It is a partnership.

I am getting hungry again.

So what we have here is:
Mutations
Dehydration vs. water
Therapy/getting smacked – how many times a day
Exercise/movement
Tension
Philosophy

My doctor told my mom when I was diagnosed while being sent home with a plethora of medical supplies –

“You can do everything; be perfect like God, and Tessa still may die.”

I believe he was trying to comfort my parents that if something happened, don’t blame yourselves.

So – to anyone and everyone out there reading this, CF or non-CF folks that can comprehend any of these words, I say –

“We still may live.”

And keep living, WTF.

And living beyond what we thought we could live to.

And then we say “WTF.”

And live some more.

And experience joy some more.

And laugh some more.

And say WTF a lot.

Every door closed there is a window someplace or something.

We already walked through that closed door, looked behind, and shrugged our shoulders.

Then we broke through that window –

That window,

And that window.

I believe in nothing less.

I refuse to believe in nothing less.

WTF.

May is CF Awareness month – welcome to becoming aware, two.

Genetics – let’s keep this simple. I have to keep it simple.

This is straight out of the CF Foundation as they have perfected the language:

“To have cystic fibrosis, a child must inherit one copy of the cystic fibrosis transmembrane conductance regulator (CFTR) gene mutation from each parent. People who have only one copy of a CFTR gene mutation do not have CF. They are called “CF carriers.”

CFTR is a protein that does not work the way you would like it to.

Each time two CF carriers have a child, the chances are:

25 percent (1 in 4) the child will have CF
50 percent (1 in 2) the child will be a carrier but will not have CF
25 percent (1 in 4) the child will not be a carrier of the gene and will not have CF

People with CF can also pass copies of their CF gene mutations to their children. If someone with CF has a child with a CF carrier, the chances are:

50 percent (1 in 2) the child will be a carrier but will not have CF
50 percent (1 in 2) the child will have CF”

Here is a neat little picture and more info:
https://www.cff.org/What-is-CF/Testing/Carrier-Testing-for-Cystic-Fibrosis/

There are more than 1,700 genetic mutations of the CF gene, but not all cause CF. Current tests look for the most common disease-causing mutations, but they don’t test for every disease-causing mutation.

To sum it up:
You need two carriers (one that has CF or not) for the possibility that your child may have CF.

I would advise getting tested to see if you are carrier, because they do not test for every CF mutation and your baby may still have CF if both of you are carriers.

About 10 million Americans are carriers and are usually (but not always) from European descent. There are approx. 30,000 CFers that reside in the U.S. and 70,000 worldwide.

My take:

I knew from the age of 6 or 7 that I was not going to have children.

For me – who in the hell would want to carry this gene forward?

When I was born the life expectancy was 2-5 years old. So, I have always been quite close to the end of my life – in theory. It is almost like being born at 75 years old and knowing the life expectancy is 78 years old. You have these very select ad vital years to make the most of your life. But, then as I marched ahead so did the life expectancy, and I am so thankful for that.

Put that aside, if I was born today and knowing the life expectancy was 40 years old, even with the genetics, I may have considered having children, thinking technology and medicine will make life better for CFers, because they have and they will continue to do so.

There are times, I am not going to lie that I have seen myself as a mom. I even thought of ways of not having the child myself. But then I would cough or get an infection or my sugars would crash, or maybe the amount of preparation to take care of CF just side-lined that thought.

For me, it would not be right or fair to bring a child into this world where one, I could knowingly pass before them. And if I had a child with CF and they were in pain or their quality of life was compromised in such a way that it hurt my child, I don’t think I could live with myself. I could not live guilt free, because I knowingly walked into this – and I don’t think any child deserves that.

The buck stops here with me. I will not carry on this gene that yes – has made me who I am, but where in the years of my life I have had to learn how to walk through hate and anger and shake hands with my mortality. Where I learned by great practice that CF and I will get nowhere by fighting against one another.

Where I had to acknowledge that my body is asking for my help, not for my fueled, desperate anger.

I am actually opposed to the term CF fighter. I get it – and believe me by saying this, I could get some opposition. But I am not fighting against CF, it is not my antagonist in this story.

I agree CF sucks at times. It fucking does. It is not a nice disease, and yes, it very well could take my life. But, it isn’t my antagonist. By me hating it would be. I don’t want to hate anything, especially not something living inside of me.

I don’t see how one can live peacefully by fighting. It is exhausting, and I don’t think it is possible given the definition and the energy surrounding those words. Even the word fight makes you scowl. It changes your facial expression vs. saying amends or peace or love or laughter.

You get some place by coming up behind it, filling up that cup with goodness and happiness and letting it overflow onto the ground, and let it keep going and going with all that goodness.

Where becoming friends with CF – let me tell you that took a hell of a long time – is the number one reason I believe I am as healthy today. Moving those positive thoughts on out, or so I think.

May is CF awareness month – welcome to becoming aware

I have been writing this blog for a few years now, and I have never mentioned it.

In the past, I have often thought “People know what it is.” However, it seems they often half know what it is.

Whenever I am in a new space, people often notice that I am taking something like candy. My enzymes give me away. Then the amount of food and my size. My cough. At one time I didn’t cough, so I could pass as a relatively healthy person for a few months longer.

I do not hide my CF, but I don’t announce it either. I like having people get to know me first, a bit anyway. There does come a point where I have to say something, my gut usually signals me. If I don’t say something to my friend, they will feel mislead down the road.

However, when I say, “I have cystic fibrosis. Do you know what that is?” I have a few bylines attached to said announcement:

Do not ever feel sorry for me;
There is nothing to feel sorry about.
Do not ever treat me differently;
Treat me with compassion, but never differently.
I don’t believe in complaining,
There is no worth in it.
I am matter-of-a-fact about certain defined realities, because
CF is.
It takes everything and more.
As life takes hard work,
Work hard.

With that – understand that it takes a lot of time to care of CF, and those who have CF are well aware of the patience and perseverance that is needed. At times, those qualities will be undoubtedly asked to those who know the CFer.

CF is extraordinarily selfish. It takes and takes. You can hit things, ignore it, yell at it, it doesn’t matter – you are stuck are with it.

Flip that, let’s say for fun –

CF is a friend that clasps their hands together to give you a boost;
A Kleenex that is in reach every time you sneeze;
An extra key in your pocket when you left the other one at home;
A friend that hands you a hot cup of coffee just when you spilled yours;

One dryer sheet left in the box when you have one last load to do;
Your plane is delayed when you are running late because your dog got spooked;
You got off the night shift just when the sun begins to set later and later;

A tornado that zig-zags through your neighborhood leaving your house standing;
Watching the rain pour out of the sky, lifting the humidity and bursting the saturated molecules, leaving it to do its’ next bidding;
A parachute that catches you every time you fall.

Let’s say, for fun.