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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Never Again?

My Husband loves to play Call of Duty on Xbox Live. When he is on there and he doesn’t have his headphones on, you can hear the trash talk from the players. Last night, I was amazed and appalled more than usual. These were kids, probably tweens or younger spouting anti-semitic jokes and comments rather than the usual sexual and racial ridiculousness. Then, as I was listening, a younger boy that had lead the Holocaust jokes, asked a timid question: “Do you really think the Holocaust happened?” One of the younger players answered him. “I don’t know. I guess.” 907014-holocaust-survivor

That really floored me. Growing up, we learned about the Holocaust and I never once questioned whether or not it really happened. What was the difference between my understanding of history and his? I’ve pondered this in the back of my head all night and this morning. Here is what I have come up with so far. Let me know what you think.

I was born in 1963. A lot of our teachers, parents, and grandparents either participated in the war or were old enough to have heard stories first hand. Some grew up watching the footage in the movie houses and heard reports on the radio. I personally know at least one man that was in France during WWII. I have heard horror stories from not only that war, but the “conflicts” since. We watched actual footage from the events and the movies we saw were stylized and did not show the gruesome realities of war. We knew the difference between the reality of war and movies.holoccaust

What about today’s children? They are inundated with graphic images on a daily basis. From TV, movies, and video games. I looked up some pictures of the Holocaust and it struck me that in black and white, they could resemble actors from the Walking Dead. How confusing it must be for children to try to discern the horrific images and details of the Holocaust from the images they see on a daily basis. The numbers of the victims are difficult for adults to wrap their minds around, let alone children.holocaust-men

Survivors of the Holocaust are almost all gone now. Our WWII Veteran numbers are diminishing. The stories at the feet of people that lived these horrors are no more. Stories at the feet of our elders are pretty much gone altogether. Technology has replaced the quality time spent with our older relatives. We have lost so much with the technological advancements that were pushed for during the time period following WWII.

I don’t know how to make someone understand what is real and what isn’t in the world. This is how horrors of the Holocaust will be repeated in the future. Not that it will be forgotten, but it will be enveloped in the psyche of horror fantasy that are everyday images and just seen, not felt.World-War-2-Holocaust-Memorial-Day-_60

God forgive us all when that happens.

Melon calling

We were just talking about this tonight! LOL Keep on rocking your clam!

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The mind is a wonderful thing. As the language parts of our brain form, creating links between the synapses and dendrites, we also are forming archetypes for words and ideas as we go. It seems like every few months I get an email or a slew of people post the same thing on Facebook.

If you can read this you have a strong mind: TH15 M3554G3 53RV35 TO PR0V3 H0W 0UR M1ND5 C4N D0 4M4Z1NG TH1NG5! 1MPR3551V3 TH1NG5! 1N TH3 B3G1NN1NG 1T WA5 H4RD BUT NOW, ON TH15 LIN3 YOUR M1ND 1S R34D1NG 1T 4UT0M4T1C4LLY W1TH OUT 3V3N TH1NK1NG 4B0UT 1T, B3 PROUD! 0NLY C34RT41N P30PL3 C4N R3AD TH15. R3 P05T 1F U C4N

I imagine that most people can read this paragraph. As we learn more words, our brains try to make it more efficient to read and communicate. Archetypes of words are formed using the key letters that…

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Three…no. Five little birds

I heard that he was denied parole again. Thank you God. I thought it would be appropriate to post this again.

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Thomas Charles Fuller II. Another important man in my life. I’ve never met him, I never want to meet him and I hope I never do meet him.  Thomas Charles Fuller is serving two consecutive prison terms of 70 to 99 years somewhere. I really don’t care where as long as he stays there. He was denied parole for the 13th time today with the Parole Board vote of 14-0 to deny parole. Good on them.

In the spring of 1968, I was five years old. I was going to be an opera singer. I drew, colored pictures, played in the grass with my dog, Susie So-So. Don’t ask me where I got her name, but she was my best friend. Mom told me, just in the last few weeks, that we got Susie from a cousin of Dad’s that raised Dalmatians, Tom Speer. Tom had been born with…

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Lilacs and thunder

I want to start off thanking my friends and family that held me in their minds, hearts, and prayers today. Mom passed away on Easter of this year and Mother’s Day is here. I decided early on to bow out of going with my Husband to celebrate Mother’s Day and his Father’s Birthday with his family. I didn’t want to take away from the joy of their day and I also didn’t want anyone walking on eggshells around me today. I turned down a lovely dinner invitation as well. I didn’t know how I would feel today. Would I be solemn? Would I be breaking down and crying most of the day? What would I feel today?

I have to say that yesterday was much harder than today. A good friend asked my Husband to substitute for a member of their pool team at a tournament yesterday and wanted me to come as well. I enjoy going and I think she wanted to make sure I was doing something yesterday. Maybe I broke because I was so tired from my medication. Maybe it was the anticipation of Mother’s Day and not knowing how I was going to feel or do and I was not going to have my Husband with me. He, of course, took the brunt of the crying and yelling, but sometimes, dog gone it, he sure seems to ask for it! I planned to do some sewing, some laundry, color my hair, some worthless TV watching, a good deal of nothing. Keep it simple.

ImageMy Husband was leaving early to see his family, so I puttered around while he was getting ready and decided to paint my nails. I painted my toes a dark color with a gold accent nail, and tipped my fingers in OPI Miss Piggy. That always makes me smile. After he left, I made some breakfast and settled in for a couple of episodes of Bridezillas. I know it’s an awful show, but it’s mindless and makes me remember what a great bride I was for our wedding! 🙂 I was feeling pretty good, so I decided to change the bed linen for the summer sheets. I opened all the windows, turned on the fans and loved the feeling of the gentle air through the house. I noticed the wonderful smell and feel of the flannel sheets as they came out of the dryer, held them, closed my eyes, and let myself be taken away by the freshness. Simple.

A theme emerged for me today. Enjoy the simple luxuries today. The ones we seem to miss day to day in our busy lives. So I set out to enjoy as many of the simple things I loved today. I felt like that would honor my Mom. She was at heart, a simple woman. Not that she was not intelligent by any means, but she enjoyed the simple things in life. She loved to grow things more than anything else. Her garden was her pride and joy and she could grow anything. Anything but blueberries, she said. Growing up, we had a garden of about a half acre all put together. We planted 150 tomato plants per year, potatoes, green beans, onions, radishes, lettuce, corn, brussel sprouts, cabbage, carrots, and those were just the vegetables. We had a huge strawberry patch, rhubarb, grapes, blackberries, cherries, apples, and pears. My best memories are of the smells of the cherry blossoms, lilacs, the gentle caress of the breezes across the fields, and the sounds of the crickets and the leaves of the trees in the night. 

I made a gallon of brewed tea and poured myself a pint Ball jar of iced tea. My favorite glass. We canned so much growing up that there were always canning jars around and when you took a jar outside, you had a lid to keep the bugs out. There is nothing like a jar of iced tea on a hot day. This day was heating up. I closed the windows and turned on the air conditioning. I have a previous post publicly proclaiming my love for the inventor of the air conditioning system. I worked on a sewing project that I have in the works and instead of throwing a torn flannel sheet away, I have decided to try to make a night shirt out of it. The flannel is so soft and it will feel wonderful. 

Then something wonderful happened to my day. The rain. I looked around and the lilacs my Husband had gathered for me were wilting and with a storm coming, the bushes next door might get battered. I went out to the shop and got the pruning shears and cut some fresh lilacs in the gentle rain. I held them up to my face and breathed the amazing fragrance of the blooms as deeply as I could. They sit in a place where I walk by and can enjoy them for the next few days. Simple.Image

I sat on the porch with my jar of tea, watching the rain, reveling in the tumbling thunder. I decided to do something I haven’t done in years. I got out of my comfy seat, climbed down from the porch and walked out in the rain. The cold drops falling on me brought me back to my childhood, spinning with my arms out in the rain. Walking though puddles and jumping the deep ones. I miss my Mom, but it would be selfish of me to feel sad that she isn’t here. If she had survived the event that took her life, she would be unable to live at home with my Sister, and have been so unhappy that she would have wished for death. I know she happier than we could ever imagine, she is at her best health, and at her finest age and fitness. I will see her again and she will be the Mom that I want to visit with, not the woman-child wrapped in fears from the past, wrapped in a fragile husk of flesh in which we all are burdened. So, all in all, it was one of the best days ever.

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The North Star

The North Star. Sailors used it to sail around the world, others use it as a guide post, to find their way. In most people’s lives, their Mother is their North Star. It’s always up there looking down on you, waiting for you to look up at it. Waiting patiently for you to use her as a point to find your way in life, even if sometimes it is an example of what not to do, you always look up and see where you are and where to go next. 

The North Star is dim now. Our Mother passed away on Easter Sunday. She had suffered medical issues for years and years. She had cataracts at 23 years old. A doctor messed something up and she almost lost an eye. She contracted Toxoplasmosis and it settled in her eye. They tried to incapacitate the parasite by giving her Typhod Fever, a unique treatment they used in the military. It did cause the parasite to somehow only become active once in a while. That was before I was born. She had several surgeries for benign tumors that had “arms” reaching out in her arm and breast. Several eye surgeries and she wore tri-focals by the time she was 28 or 29. She survived breast cancer, heart by-pass surgery, several heart attacks, was fighting diabetes and her mobility became limited by arthritis in her spine. Her kidneys were going, her capillaries were blocking, and she had been legally blind for years due to diabetic hemorrhages. She fell and broke her arm last Thursday. The doctors said that putting in metal plates would allow her to have the use of her arm quickly and after testing, her heart was strong enough for surgery. She came through with flying colors and on Easter Sunday she got up and ate breakfast and was joking with the nurses. The nurse said she sat on the edge of her bed, got a surprised look on her face and collapsed.

The tried CPR several times and we decided it was enough. She had a thready pulse for a bit. My sister was there and put me on speaker phone so I could tell her Ioved her and go be in peace. My brother got there, told her he loved her and then she took her last breath. It was unexpected, but what better day to enter the kingdom of God and what better way to leave this world. God’s speed Momma.

She would tell us that in college, the boys would play this song for her. Here you go Momma: http://youtu.be/0M3uR24_V10

Here is a link to her obituary if you are interested. http://www.mitchell-jerdan.com/obits/obituaries.php/obitID/510818/obit/Mona-Mae-Durdel

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Mona Mae (Gilmer) Durdel