This post is just for me

Someone on the Camino Forum made a comment that I had said I was not in the best of health.

I thought to myself, "did I really say that?'

I am Portuguese.
We tend to talk with our hands in the air. I also tend to exaggerate. And Portuguese people are known for not having a lot of filters. So it's sort of like saying "I'm starving" when you're not really starving, you're just a little bit hungry.

I'd like to respond here to get it off my chest . And honestly, this post is not for anyone but me. So you can just scroll on past this post because this post is simply to remind myself how good I have it on those days when I might begin to feel sorry for myself or feel that life is hard.

And this post is long. Because it contains all the thoughts that I've been rolling around in my head for the last few days and weeks.

According to the Internet and AI:
Being in excellent health means having a strong body, a clear mind, and good social well-being, rather than just lacking sickness. It lets you do your daily work, enjoy life, and handle stress with high energy and strength.

Key Signs of Excellent Health include

Physical Vigor: Strong muscles, a healthy weight, good heart function, and high stamina.

Mental Clarity: Emotional balance, low stress, sharp focus, and a positive mood.

Good Habits: Eating nutritious foods like vegetables and whole grains, staying active, and sleeping well.

Social Connection: Building positive friendships and feeling connected to your community.

I am 74 years old
I do not smoke
I drink maybe twice a year socially
Joe and I do not eat anything that comes out of a package or can unless absolutely necessary.
Joe and I grow all of our own fruits and vegetables.
I buy fresh eggs from a local farmer.
I take zero medications.
I do not wear glasses except to read.
All of my joints are my own.
My blood pressure is 110/70.
My oxygen levels run between 95 and 98% even with BHD.
I still drive and take care of my own personal affairs.
I have a pretty full social life, as full as I would like it to be. I have one very best friend and a few other really good friends that I interact with on a regular basis.
All in all, I'm in pretty damn good shape.

I have two physical conditions which I consider blessings.

The first is multiple chemical sensitivities (MCS) which I have had most of my life. The specialist believes it was from growing up on a farm and working with chemicals like DDT regularly before we knew they were dangerous. I have been on federal disability for MCS since 2012, when I got to the point I could not function in regular society with all the chemicals everybody is using. In the beginning, it was terrible. I could not go into a grocery store. I could not go into Home Depot because of the formaldehyde in the wood. I cannot live near the highway because of the exhaust and I couldn't park in a covered car park because of the exhaust. I could not work in an office with people who were wearing any fragrance at all.

Over the years, I've learned what my trigger substances are and I stay away from them and so now I can function pretty normally. I still cannot attend to church or be in a room with people who are fragranced. But I enjoy outdoor activities and most of the people in my life who care anything about me are fragrance free.

When my body is exposed to certain substances, I have a very strong "fight or flight" reaction. When it happens, my first reaction is to get out out of the area right away. If I am in a position where I feel trapped, I will fight to get away. It can be pretty rude and ugly because I am literally fighting for my life. At least that's what my amygdala is telling me. That is not a pretty thing.

My specialist explained it like this: you are walking down a mountain path having a great trek and all of a sudden you almost stepped on a rattlesnake. You jump back! And your body is flooded with fight or flight hormones/chemicals.

Your pupils grow larger to take in more light. You detect the smallest of motions.

Your hearing becomes so exceptional you can hear a leaf fall or a pin drop in another room. In other words, you can hear a predator coming.

Your sense of smell is enhanced.
I can smell the UPS man coming two blocks away if he's slathered in cologne, or a rat who's made a nest around the corner outside. That enhanced sense of smell means you can smell the bear around the corner.

Your muscles tense up and get ready to run or jump high or run fast or fight.

Then you look down again and you realize it was just a stick.

In a normal person all these chemicals flush out of your body in a matter of minutes.

In someone with MCS, they snowball and the reaction gets bigger and bigger and bigger, and eventually overwhelmes the person, and they are unable to function. I get a migraine. I get brain fog so severe I can't remember the birthdates of my children. I cannot focus. I get absolutely befuddled. I can't answer simple questions. I certainly cannot carry on a conversation. My thoughts are scrambled . And my joints swell up and ache. All of my energy is going to getting out of the area to someplace safe. Because my brain is screaming "you are going to die!"

MCS means I cannot slather dangerous chemicals onto my skin; things like scented soaps and shampoos, body lotions, makeup, or hair sprays that people are poisoning themselves with every day . Our skin is our largest organ and although we seem to think it's impenetrable, it is not. Many of those chemical molecules go through the skin and directly into the bloodstream, causing cancer, Parkinsons, and other diseases.

MCS means I cannot use those insidious highly fragranced laundry products. I cannot use toxic chemical plug-ins to fragrance my house. I cannot use Febreze, which is extremely toxic to both humans and animals. I cannot use fragranced candles. I cannot use spray air fresheners. I cannot use perfume or fragranced body washes . I cannot eat processed food that has chemicals added to it to enhance the flavor. Things like bread in the United States that has been "fortified" make me very sick.

So I feel MCS has been a blessing in many ways.

HOW?

For one thing, if I did not live such a clean life, the symptoms of this Birt Hogg Dubét Syndrome would have most likely shown up in my 40s and 50s. Instead, I have had 74 fabulous years with very few symptoms disrupting my life. Any symptoms are so minor compared to the health problems other people are having, I just can't complain. I just will learn to live with them.

Last year when I was unable to walk the Camino because I could not breathe, I couldn't figure out what was wrong with me. After having AI write a letter that I uploaded to My Chart, my doctor finally referred me to a specialist, who ordered a CT with contrast of my lungs, and I was diagnosed with BHS. One result of this syndrome is that my lungs are full of weird air-filled cysts, which make it difficult to breathe and give me less stamina. I will have to have my lungs and kidneys regularly scanned if I want to stay healthy.

That is it. There's no medication to take. There's nothing to do. It just is what it is. My body does not produce the substances that stop the growth of tumors. But as long as I take care of myself, eat right and don't poison myself with common chemicals, my doctor says people with this inherited condition can live very long lives - so I plan to make it to 110.

Will I be able to continue walking long distances? No probably not. I just don't have the stamina in the last two years that I used to have because of the cysts. But gosh, when I consider all the other diseases that I might've inherited, I can live with this one! My daily life won't change much otherwise. Joe and I can continue to walk a few days a week and work in our garden. I can pretty much do anything I enjoy without restriction.

So what are the benefits of this diagnosis? Well, I found out why I couldn't breathe for one. I found out why I had breast cancer. It encouraged my oncologist to have a CT with contrast of my kidneys - so now I know that I have a growth in my kidney that needs to be watched.

Simply put, Birt Hogg Syndrome means I'm missing the gene that halts tumor growth. That's why I have those little white bumps on my face and behind my ears that look like whiteheads, but they're not; they are tiny little tumors. We've always just called them 'the bumps .' My elder son has some and my middle son has a lot. My youngest son has none and hopefully does not have BHD but he's young and it may just not have manifested . I'm keeping my fingers crossed for him.

When I got breast cancer, I was stumped because nobody in my family has had it and I did not have the BRCA gene.

The doctor kept asking me if I had ever injured my breast and I kept saying no, but last year I was scrolling through photos and I found a picture of my breast, black and blue, and I remembered that I HAD fallen and I had hit the bed post. Cancer set in and grew a tumor there because I don't have the gene to halt the growth of tumors.

Because of this diagnosis, my doctor also did a CT scan scan with contrast of my kidneys because people with BHD tend to get kidney cancer. And guess what? I have a tumor in my kidney. It is benign. But now they can watch it and maybe scan me every couple of years. Kidney cancer is very dangerous because you show absolutely no symptoms until it's stage four and too late. Now I can keep an eye on this and have it removed if it ever does become cancerous and keep my kidneys. I consider that a blessing.

This condition is inherited from one parent. I'm pretty sure I inherited it from my mother. My mother did have a benign tumor in her brain. She did have the bumps on her skin, but they were mild. Her mother had a tumor in her kidney and her grandmother had kidney cancer.

Another blessing is that now my descendants can be tested. It's a very simple blood test. If it's negative, then it stops there. If it's positive then their children can be tested and be more aware of their possibilities of kidney or other cancer and take precautions.

There are two things we cannot do with BHD. Most of the cysts in my lungs are deep in the tissue. But some people develop the cysts on the outside of the lung. Those are more dangerous because changes of pressure can cause them to pop and cause lung collapse. So it's dangerous for some people to fly if they have the cysts on the outside of their lung. Flying in a large plane is probably OK because they are pressurized cabins but a small plane could be a problem. Each person is different and that's why it's important to have the CT scan with contrast so your doctor can tell you what you can and cannot do . Most absolutely should not skin dive. The change in pressure is just too great.

I have one cousin who had a lung collapse many years ago, and her sister just had a lung collapse and died last year while I was in Spain. She was one year younger than me. Her doctors did not know anything about BHD and so they told the family that her lungs were fibrous. Well, they may have looked fibrous if they did not do a CT with contrast and they would not have seen the cysts. They do not show up on an x-ray because they're filled with air. As a result, the youngest sister is refusing to get tested because she does not believe she is in danger . To me that is absolutely irresponsible because she has children and grandchildren. But you can lead a horse to the water as they say.

Anyway, that's what's going on in my brain right now and I just felt like I wanted to tell myself how lucky I am. I am a survivor. I have survived childhood sexual abuse. I have survived breast cancer, and a double mastectomy. And now I have survived MCS and BHD. I have a wonderful exciting life that I love and I'm so grateful to wake up alive every morning.

So even though I may have said I was "unwell" in some fashion, without thinking about what that might mean to other people, I do not feel unwell. I feel healthy and strong and happy.

I have a best friend who likes the same things I like. I have three sons who I love dearly and three awesome grandchildren.

Every morning, when I wake up, the first thing I do is give thanks for my very rich and full life!

And now, here I am in Spain, walking the Camino, albeit slowly. My plan is to make it all the way to Santiago, but you know what? I either will or I won't. And either way it will be a good thing.

So I guess that's all. Now these thoughts won't race around my head and keep me awake all night. Ha ha ha!

If you read this, I'm sorry. 😜
You were warned.Læs mere