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.
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.
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.
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!
Three Little Birds
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..
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.
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.
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.
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.
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.
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!
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!
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.
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.