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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Rest now my friend

 “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” – Maya Angelou

I turned 50 a little while ago. It wasn’t that big of a deal for me, but my amazing Husband threw me a wonderful party and invited as he said “as many people as you are old!” I had to laugh as he was in that ‘last minute party panic’ and it was supposed to be a surprise. I had easily figured out about the party. You can’t miss some signs when there are just two of you that live and work together, cases of soda we don’t drink, more chips and dips than we can eat show up, and mysterious phone calls. I asked about the soda and was given the response “I have a hankering for something different”. I laughed out loud and so did he. I finally asked what day I had free that weekend, then if I should shower and put on makeup on Sunday. The answer was “you might want to do that”. The main answer was that “nothing” was happening on Sunday. I received a call from a friend on my birthday and I asked them to come by on Sunday because “nothing” was going on that day. I turned to my Husband and asked what time “nothing”  was happening and he said “about 2”.

His big surprise was he didn’t tell me who he invited. I knew my Mom and Sister were coming, but didn’t know about anyone else. It was wonderful! It was amazing to see who came to my party. Of course, most were local, but several drove almost two hours or more to celebrate with me. There were unexpected gifts, a “fifty” tiara and beads, a huge cake, and more food than we could ever eat. The women in my Husband’s family couldn’t believe he could pull off this party and have enough food, so they brought extra! We could have fed the whole town! The most precious gifts were the handmade cards by little hands, little origami figures hidden around our house, and most of all the company of the people that attended. It’s unexpected times like those where you can actually see how you have touched people. It was a blessing and filled me with joy.

My friend Charlie McFadden didn’t make it to 50. He lost his battle with cancer Monday at 49. There had been an amazing benefit for him several months ago. I was able to talk to him a bit then, but there were so many people there and not the place to catch up. I didn’t follow up much after that, hoping to hear on Facebook how he was doing well. He went back to work and seemed to be doing well, but then the cancer became stronger and he started to deteriorate. I was going to stop in a visit with him while I was at home for my Sister’s birthday at the end of August. I was so looking forward to seeing him again, but alas, time was not to permit it. He had started going downhill fast and was unable to have visitors. I felt so selfish, thinking I was taking up precious family time to come by and try to make up for time I should have taken over the years to be a real friend.

I met Charlie the first day of first grade. We were a small school in Cooks Mills, Illinois, housing six grades in three rooms. There were little more than a dozen of us in first grade and that was the core of my school world until high school graduation. At graduation, our class size was near 400, but there was always a special bond with that first grade class. At our class reunions, as many, the group is much smaller as the years go by, but our core group seems to try to attend. In fact, our last reunion was held by one our group at their home/horse arena. Facebook has brought many of us together again and we had a reunion of our middle school group, when we all went to Humboldt School. I got to see Charlie then, but didn’t visit as long then.

My last memory of really getting to visit with Charlie was at the last class reunion. We were able to sit and visit for quite a while. That was wonderful. It was like we had never been apart. I don’t know what reaction other people had with him, but for me, Charlie was like a warm blanket. When I was around him, I just relaxed immediately, I never felt judged or looked down upon, just accepted and always happy to be with you. He was one of those rare people where I could have sat with in silence and never felt an uncomfortable moment. Charlie was special to me even though we never had much to do with one another in high school and didn’t see each other after high school until maybe 20 some years afterwards. Now he is gone.

Maybe it is age that pulls your thoughts back to the people you knew early on in your life. Those people had an impact on who you are today, how you accept people, deal with life, and feel about your life now. I will always call those people my friends, even if we never speak again. I’m so glad Charlie had the opportunity at his benefit to feel the love I felt at my “Nothing”. I can almost imagine the overwhelming feelings of awe and love that he must have felt at that event. I missed my visit, but there will be plenty of time for that later. Until then…

It figures

“Well life has a funny way of sneaking up on you
When you think everything’s okay and everything’s going right
And life has a funny way of helping you out when
You think everything’s gone wrong and everything blows up
In your face” – Alanis Morissette, Ironic

I think everyone gets songs stuck in their head sometimes. I believe sometimes the song is supposed to point you to, mean or warn you of something. At other times I think God is just playing the most annoying song game and you are it.

If you have never played the most annoying song game, you must try it with family, friends and co-workers. Before you just run out flailing your arms spouting off song titles, stop and consider strategy. You must develop your arsenal of either horrible or catchy songs and they must be songs that the general public will readily recognize and flinch when they hear it. Not to offend anyone, but some of the most powerful ones in my arsenal are; “Mickey” by Toni Basil, “Barbie” by Aqua, and “Dancing Queen” by Abba. You see, you already hate me!

You must consider your target’s preferred genre. You can’t throw out a dance song to a person that loves country music, unless perhaps you can use “Cotton Eye Joe” by Rednex. What you don’t want to happen is to get pawned at a game you started. You can play this game without anyone catching on for a while if you are really good. Walk past someone humming one of your chosen songs. If the song is good and they are paying attention, you will find them sometime later cursing either you or the fact they can’t get the song out of their head and they don’t know where it came from! In the infamous words of Charlie Sheen, “Winning!”.

This song came to mind this evening while we were watching an ABC “News” program about one spouse murdering another. I’ve always told my Husband “To his death do we part”, so one must do the research. Anyhoo, this spouse either gave the other spouse ethyl glycol to poison them or took it themselves to make the other spouse pay. Kill yourself, that’ll teach them!

We had a wonderful dog that died because of ethyl glycol poisoning. She just gave the dried spot of anti-freeze in a neighboring lot a lick or two and her life was short from there. It is a quite painful death that we did not allow her to have, but the result is the same in the end and a story for another time. From my understanding ethyl glycol moves through your system very quickly and basically crystallizes your internal organs. The kidneys shutting down quickly and a horrible death follows.

I had gallstones back in 1994 or 95. Time passes quickly and I can’t always keep up. I had a few episodes of acute attacks and decided the gall bladder and I needed to part ways. It seemed to me it was trying to leave anyway. When you get to the emergency room at 2:30 am, one of the first things they ask you is “Can you rate your pain on a scale of 1 to 10?” I always reserve 10 for childbirth, so I could never rate pain at a 10. I’ve never had a child, but logistically, I have seen a newborn and am familiar with the area they push and tear their way through and that’s gotta hurt to an 11.

In triage they also ask the location of the pain and what it feels like. In this short experience in writing the blog, people have commented on my descriptive nature. Imagine having me in the room telling you about my pain. My gall bladder pain presented as if I was in the movie “Alien” when the damned thing comes out of Kane’s chest like a Jack-in-a-box from hell. That usually either got me stares or “Wait here, I’ll get you a room”. Apparently the calcium crystals formed stones and were blocking my duct on a whim. Well, we got rid of that problem pretty quick, but found a bigger one.

My lymph nodes in my chest cavity were swollen when I had my pre-op chest x-ray. There were several differential diagnoses listed when the report came back such as Castles’ Disease, Hodgkin’s Disease, and Sarcoidosis. My maternal Grandfather had died of Hodgkin’s Disease before my parents were married. The other two I had never heard of before. The plan was to remove a lymph node from my groin area and do a biopsy.

That was the most fun surgery I have ever experienced. I was awake and the surgeon allowed me to bring in a thunderstorm CD (thunderstorms relax me) and a chime ball I could roll between my hands. I think those really helped me relax and the Demerol/Vistral shot in the rump was pretty sweet as well. We talked through the procedure and the nurses kept feeling my toes and saying I was the most relaxed person they had ever seen. The tufts of smoke from the cauterizing scalpel amused me and when I asked to see my lymph node, it looked like a piece of stew meat! That made me giggle until the drug wore off. Then I hurt.

The biopsy came back as Sarcoidosis. So, being me, I went to the hospital library and looked it up. At the time, I wished I had cancer. “Sarc” as we “Sarkies” like to call it, is systemic, but can effect any organ/system at any time if feels like it. Basically, the body is paranoid and sees enemies everywhere and rallies the troops (helper T cells) until they form giant cells and literally change the architecture of organs by crystallizing.

Ninety percent of people diagnosed with Sarcoidosis have it in their lymph nodes and lungs. It effects my lungs, lymph nodes, skin, kidneys (hypercaluria causing kidney stones), and more than likely, but unconfirmed, nervous system. Treatment options for Sarcoid are usually Steroids or Methotrexate, both immune system lowering medicaitons. I was on steroids for several years, but when I was planning my wedding, I didn’t want the “balloon face” I had been developing and switched to Methotrexate. I have been on that since 2004.

Some lucky people will spontaneously go into remission. Not me. We have tried to lower medication a couple of times, but it really wants to stay with me. The prognosis for survival with sarcoid has been reported at about 20 years post-diagnosis. My 20 years will come around in 2015. I want to have a big party then as a celebration of beating the odds.

If you haven’t noticed there was a word that appeared throughout this post. I’ll wait while you find it.

My Mom tells me that when she was pregnant with me, they went back and forth over what to name me. She wanted to name me Cindy Lou or something like that and my Dad wanted to name me Tokana. Yeah, I don’t really see a compromise there either. I was probably rolling in my embryonic fluids listening to those discussions. So, at the baby shower, a hat was passed around for suggestions on what to name me. The slip of paper Mom pulled out was Crystal. They liked it and gave it to me. It was pretty unusual when I was younger and you would never find it on bracelets, tags or other jewelry. Then one day, I was taken aback my women calling my name in stores and finding them yelling at small girls. Hmmm. Then, it seemed like every time Jerry Springer had a hooker or stripper on her name was, you guessed it, Crystal.

Well, I just figured out how ironic is was that some mysterious person would pick the name Crystal and that is what this disease does to my body, crystallize it.  “Well life has a funny way of sneaking up on you….”

Say goodnight Gracie.