What A Day To Feel Alive

I have an “invisible” chronic disease called Sarcoidosis (Sark-oyd-osis) for at least 21 years.Here is link to help explain the disease: https://www.stopsarcoidosis.org/awareness/what-is-sarcoidosis/   I believe it started with my gall bladder. I had a bag full of stones, first in the family. Upon a pre-op x-ray, my lymph nodes were swollen. Then it began. Differential diagnoses freaked out my family (my Grandfather died from Non-Hodgkin’s Lymphoma) and me. It came back Sarcoidosis, no one knew what that meant. I went to a medical library and did my research. At that time, the medical books said the lifetime prognosis after diagnosis was 20 years.
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Birches

I freaked out. I started reassessing what I wanted in life. Made major mistakes in men because I put myself out there trying to find a life. The first couple years were somewhat uneventful. I had an episode of not being able to breathe, but the rude Pulmonologist said it was no big deal. I wasn’t dead yet.
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Cuckoo

I found the man I wanted in my life forever. A former Paramedic/Fireman, now a nursing home administrator. He understood the medical issues I had and we discussed the possibilities. We moved fast and moved together to his new job. So, of course, symptoms began. In no specific order, I had sinus surgery,a kidney stone, lung issues, etc. Between then and now, there were four more kidney stones, a bone marrow biopsy (without medication the disease prohibits red blood cell production), Thyroid surgery (not related to sarcoid), skin issues, joint issues, pain, etc. We got married in 2005; the happiest day of my life. I wasn’t dead yet.
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All the time, I still had that 20-year prognosis ticking away in my head. Realistically, I knew that there had probably been new medications and treatments that might make that old prognosis invalid; but I couldn’t get it out of my head. Finally, that 20-year date came along. I still wasn’t dead yet! I celebrated by getting two tattoos. They symbolized to me not to worry, to take time to enjoy the small things in life, and to be still and listen to God.I was peaceful. I had made it to that time limit in my head and now it was my life!
Last year, I was also diagnosed with Fibromyalgia. Toward the end of the year, we started arguing, a lot. Most people think our bickering is arguing, but that is just how we banter. This was real arguing. We worked together in our clock shop. My Husband opened a clock shop about 12 years ago and I came on to learn how to restore clock movements about six or seven years ago. He started saying my skills were lacking and saying I was cutting corners. I was, of course, furious. Then, he decided I was to distracted by my bench TV and/or my phone. Again, I was furious at the accusations. If you’ve met us, you know neither one of us like to back down. It was getting bad. Then at the beginning of this year, my hands started to have occasional tremors and my back pain was really bad. I went to physical therapy and we treated it with Ibuprofen, muscle relaxers and Tylenol 3, only if i needed them. I was referred to a neurologist and waited for the appointment..
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In the meantime,  I started talking loudly in my sleep as soon as I hit the pillow. That progressed into mouth movements and slamming my teeth together while clawing the sheets and writing in air. My Husband started wearing earplugs, but it progressed into us having to sleep in separate rooms and having to wear a mouthguard after breaking a couple of teeth. Then there is the tinnitus, auditory hallucinations, dry mouth, dry eyes, the tremors, sleeping in 90 minute increments, memory loss, confusion and dizziness. I couldn’t work any longer. Once the symptoms progressed, we both realized I thought I was doing what I was supposed to do, but the memory loss and confusion was the problem. The arguments stopped and we have been closer than ever. After having MRIs of my brain and cervical spine, the results were that there was scarring on several areas of my brain and my spinal cord.
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Anna Supergirl and The Man of Steel

These new symptoms will not go away. The brain doesn’t work that way. So now, we are waiting to have a visit with a Rheumatologist, a spinal tap, a test to see how my eyes and brain communicate, and a test to see how my limbs and brain communicate. My Neurologist is also looking for a Neurosarc Specialist. I am learning to live this new existence. Our marriage is strong. I can’t imagine doing this without him or even being without him. He is my rock, my love, my other half. He is so kind.  He was so shook up when we got the results of the MRIs. He was scared. We want to be able to spend as much time enjoying each other as possible.
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For Sara – Gma, Gpa & Michael in Heaven

I try not to give into the negative energy of depression. I have done this for 21 years and I’m not dead yet, but it’s closer. I don’t want to spend what time I am blessed with being sad, bitter and sorry for myself. I want to laugh, be there for others and enjoy life with my Husband until I can’t do that anymore. One odd thing is that I hadn’t painted for about 30 years. My last painting back then was so bad, I stopped painting. I have a lot of work to do, but I can paint now better than I ever imagined! I have embedded some of them in this post. Painting, creating gives me such a sense of control in a situation where I have very little right now. Reaching out and interpreting some of the beauty I see feels like I am contributing to something.

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On the Line

My Husband wants to travel together, to be able to work on the road and enjoy the freedom, the beauty of the country, let me soak up the amazingly beautiful world and experiences before I can’t or I pass on the road one day. He has never been happier than when we took a road trip last year. He fell in love with it. My family were campers, so I knew what an amazing experience traveling, meeting people, communing with nature, and the feeling of freedom that comes with it. We had a clock conference in Las Vegas in October. We packed up our SUV, had self-inflatable mats, zero gravity chairs, coolers, computer (to work on the road), and other essentials.  We took three days to drive to Phoenix to visit with his family a few days. We visited my Cousin in Tucson, visited with family and saw Sedona twice before we left for our conference. Las Vegas was the least favorite part of the trip.

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Tucson

On our way back home, we camped all but one night. We went to the Hoover Dam and then to the Grand Canyon. We camped there a night, sat by the fire and watched meteors. The next morning, we entertained two Bucks in our campsite. We took in the majesty of the Canyon and wished we could have stayed longer. Our next night was a the Barringer Meteor Crater RV Park. There we found a gem of a park. The people were so friendly, they let us park our SUV next to the communal fire ring and plug in chargers. They had full bathrooms with showers, a communal room with laundry, tv, book exchange, free coffee and games. Everything was clean, neat and secure. We will be going back! The Crater experience was amazing! We were so overwhelmed by the size, depth and history of the Crater.
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Barringer Meteor Crater

Our next adventure was the Petrified Forest and Painted Desert. Amazing! We spent that night at the Holbrook KOA. I’m not sure we want to stay in crowded campgrounds often, but we met one of our neighbors and had a great evening. We got our obligatory picture on the corner of Winslow, Arizona. We stayed in a hotel in Albuquerque for a change of pace. We visited the Rattlesnake Museum and made our wrong turn in honor of Bugs Bunny. Onto our next destination; Roswell, New Mexico!
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And he said they wouldn’t let me hold the construction stop sign!

We absolutely fell in love with New Mexico! We had been under the impression that it was just rocky desert. That is a great deal of it, but there is a gracefulness to the desert in New Mexico. The light seems different. The stretches of road through large ranches, the cattle, the solid blue skies, and the genuineness of the people make it so special. We didn’t know what to expect in Roswell. We speculated that it might be a cheesy town loaded with alien stuff. To our pleasant surprise, it is an attractive town that has a few attractive alien decorations. We stayed for two nights at Bottomless Lake State Park, 12 miles from town. It was beautiful. Maybe not in the traditional way, but the breathtaking vista, the lake and the endless night sky, crowned by the creaminess of the Milky Way. We saw meteors every night we camped. Laughing at trying to outsmart the raccoon gang, walking under the stars, and the calmness of the nights restores your soul. We visited the sites in Roswell the next day. We were so impressed with the Museum and its research library. There is an active artist community alive and well in Roswell. We will be back!
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View from our campsite at Bottomless Lake State Park. Roswell, New Mexico.

Sorry this post is so long, but it feels cathartic to put all this in words. Do I wish things were different? Not really. Life is too short to live with regrets. Too short to live with bitterness, what ifs, and any other negativity to drag down your soul. I am not perfect. I get discouraged once in a while, but I look at my Husband, remember the blessings I have in my life, take a deep breath and smile. I don’t worry so much about me, I am in the hands of God and comfortable there. I worry about those around me. My Husband is so worried about me and what could happen. He wants to have the plans we have to happen as soon as possible. He has had it demonstrated to him that this disease can have devastating effects and they can happen overnight. I worry how he will feel if I am gone before those plans happen. I worry about my family and how they will be after I am gone. I try not to worry, but life does intrude.
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The road less traveled

I guess this all came up in my mind because of a song I heard the other day. I have heard it many times before, but the lyrics hit me differently this time.

I’ve been a poor man and I’ve been a king
I’ve had my life and the world on a string
I’ve traveled many roads but I’m so far from done

I have been hopeless and I’ve had my faith
Some things I’ve lost and some things I have saved
All of these moments showed me the way that I’ve gone

Good to know, there’s so much to live for

Oh, oh-oh, oh, oh-oh
Oh-oh, what a day to feel alive
Oh, oh-oh, oh, oh-oh
Oh-oh, what a day to feel alive

It touched me. Forgive, live in the now, tell people what you think, tell people you love them, be genuine, be grateful for what you have, don’t covet, don’t regret, but most of all; Love. Love God, yourself, your partner, others, and what time you are given.
Day to feel alive by Jake Reese   https://youtu.be/PtJYe4TqxJg
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Ken Norton and Life Lessons

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There has been too much death in my life the last two weeks. A childhood friend, distant cousin, a friendly face from my youth, a friend’s Grandmother, and now Ken Norton. Almost everyone will ask, “Ken Norton?”. How does he fit into that list of people that touched my life. Well, I’ll tell you.

As most stories do, it starts even before I was born (because it all ultimately leads to me)! My Dad was a musician. He played country music and was a local celebrity. His dream was to make it big on the Nashville scene. I’m not terribly clear on the actual timeline of events, but Mom and Dad were married in 1955 and moved around a bit after that. Dad’s Martin guitar is a 1956 model, so I am assuming that he, Mom, and the Martin traveled down to Nashville in around 1956 or so. He made an appearance on the Ralph Emery Radio Show, was backstage at the Grand Old Opry (the original one) and met Roy Acuff, and many others I can’t remember. There are pictures in albums at home that tell that story. Dad recorded several 45s for Nashville Records.

He recorded a song he wrote “Bright Lights Uptown”. Long story short, he lost the rights to it, it was published under the name Cowboy Copas on a posthumous album, the lawyer wound up in jail, the rights were purchased by a music conglomerate, it is still on lists as one of Honky Tonk’s best songs, and can be purchased mp3 on almost any sales site. Just like a country song. Because of that experience, he and Mom hosted country stars in their home when they came to Arthur, Illinois for the fair. Yep, Arthur. Yes, Amish, buggies, corn, etc. Apparently at the time, it was a hopping fair for country singers. Dotty West was at the house and in fact, Ferlin Husky was perfecting “Wings of a Dove” in their shower.

We heard these stories every once in a while. Almost every time they told the stories, someone would ask, “What were they like?”. The reply from Mom and Dad was always “Just like everybody else”. That was one thing that was instilled in me (I can’t speak for my siblings) was that no one is better or worse than us, don’t put famous people on a pedestal and don’t look down on those with less than you. Treat everyone you meet with respect.

I believe it was Dad’s first by-pass surgery (yes, first we are the poster children for heart disease). Living in Central Illinois, the premiere hospital for heart care was in Springfield. Dad was admitted, we, the family were shown the video of the surgery that was planned for Dad, and then the waiting began. We said our goodbyes, and went to the surgical waiting room to wait to hear how the surgery went. The room was fairly full, and there were rumors of someone famous being there with us. We heard Ken Norton in the room waiting for his Father to come out of surgery.

He wasn’t hard to miss, because I had seen his picture. He seemed big at the time, but probably because he was so muscular. He was 6′ 3″ and 220 pounds in his prime. My Dad was 6′ 5″ and about the same weight, but more belly. I’m not really intimidated by size coming from a tall family. What I remember most about him was how fast he put away a giant bag of green grapes!  He must have had previous visits to hospitals, because he seemed prepared. You can tell when a family is used to waiting in hospitals. We come in like gypsies, hauling in food, drinks, entertainment, and comfy clothes, knowing what waiting long hours requires. A couple of other things I also noticed were that no one tried to introduce themselves to him and he never asked for special privileges. We were all there for the same thing, we were all the same.

What he did do with his celebrity was to make his way around the floor in the days during his Dad’s and my Dad’s recovery and visit people. Introducing himself and encouraging people to get better. Sharing stories and laughs. He would send my parents Christmas cards for several years after that time and called more times that I know to check in with them to see how they were doing. I don’t know how many people he did that with, but that was a generous man with his most important gift. His time.

I only spoke with him briefly when he called to talk to Mom and Dad. I passed on the phone and listened to Mom and Dad both get on the phone and laugh with what you would have thought was an old friend. Rest in peace Mr. Norton.