Lost, part 2; or, A Typical Day In My Life With Fibromyalgia

Good afternoon. I am writing from “The Hub,” the media center at the Kalamazoo Public Library. I come here, to one of my ‘Happy Places,’ to scan and digitize my slides, photos, documents, VHS tapes, etc. If you haven’t read my last blog post, “Lost,” this will not make sense. The days are easier to keep to my routine. I wake up, sluggish and disoriented, not sure what day it is. Bend over, and nearly tip over, to get my angel kitty, Callie Christmas, her food and fresh water. Stumble to the coffee pot, falling against walls and grabbing onto counters for balance and support. Take a colorful array of pills and supplements, and get out the ice packs. The number (and type) depend on the location and severity of the pain. Find something funny to watch on TV, or put in a DVD of ‘Friends,’ “Duck Dynasty,’ or whatever sounds good. Get my coffee with syrup, my biscotti, and try to find the least uncomfortable position in my recliner, and play Wordfeud on my phone (a type of Scrabble) to wake up my brain. After a couple of cups of coffee, time with my kitty asleep on my lap, and a few rounds of the game on my phone, time to get out the laptop. Check email, ebay searches, Facebook, Ancestry, whatever. If Callie and I don’t get ‘lap nap time,’ we are both messed up for the day.

Then, after about an hour, I am ready to do some kind of work. Editing pictures, deleting duplicate files, writing to friends through Facebook, checking the news, etc. If I am up to it, I clean a bit. I go outside and play fetch with Buckeye, our lab. If I am having a day with a bit less pain than usual, I feel like working on my piles of boxes in the barn. Straightening the cupboards or the fridge, putting dishes away, etc. I offer to help my parents, maybe make a light lunch. Nothing that takes more than a few minutes of standing. Then, I usually go into a ‘carb coma,’ and take a nap. If I feel up to it, which is rare, I cook a meal for my family. After that, more laptop time, watch some TV or a DVD, and popcorn. As I have been a ‘night owl,’ I know if I try to go to sleep before 11 p.m, I will not sleep through the night. Take my nighttime medications, give Callie fresh water, and try to sleep. Lately, I look at the solar lighthouse that I bought in honor of my person that died. It changes color, and calms me. I say my bedtime prayers, think many overlapping thoughts of random, ever changing topics. Then, I try to arrange my pillows, turn on Dino CD, ‘All Creation Sings,’and set up my covers so Callie can ‘spoon’ with me. I lie on my side, and cup my hand. She comes and flops down, putting her face in my hand and purring so loudly that she sounds like an engine revving up; and we try to fall asleep. if she senses I am upset, she will lick my hand or hair to ‘groom’ me. She also will spoon with me to wake me up. If she really wants something, she will sit on my hip until I either shift to knock her down, or I get up. She is a very patient and understanding cat. She knows my every move, as I know hers. I could not find a better therapy cat. She truly is an ‘Angel Kitty,’ and I thank God for her many times daily. Twice in the last month, I had nightmares that she was a drowning baby and grabbed her, lifting her up in the air while we were both sleeping, and she STILL came back to cuddle with me. THAT is trust.

I try as I can, to keep going. I have been keeping myself so busy that I hurt myself, overdoing it. I have no ‘dimmer switch,’ as I say. I am either, ‘Mach 1 or Zero.” I have found that napping is really important to me right now, because I am so drained lately, in every way. I am used to pain, fatigue, stiffness in my body; this is overwhelming on every level. I have lost loved ones before, but only two were surprises. Those are harder, when it is a shock. I believe that people that have passed can be around us, comforting us and sending us little ‘signs’ that they are here. I have seen two ‘signs,’ small as they may be, since that person’s passing. I take comfort them, the same as when I see cardinals, butterflies, and little personal things that signify that person’s life. I have read that those, and other signs, like rainbows, are messages from our loved ones in Heaven.

Part of what is so hard to accept about this person’s loss is that their Facebook page is still active, and whoever has access checks it so often, that it seems like that person is still alive, and I can reach out to them the way we always communicated, through Facebook Messenger. It really messes with my head, but I can’t bring myself to hide their profile. Seeing their ‘online’ status makes it very difficult to accept that they are gone. Someone else changed their profile picture to that person, which is also complicating my thoughts.

As far as my disability process goes, I was denied for my appeal of my denial. I did get some good news, though-my lawyer strongly disagrees with the decision, and is going to appeal the denial. So, he is appealing the appeal, to put it in one sentence. I take heart that not only does my attorney think I should have my disability, so does my doctor. They both avoid this kind of thing, and do not normally appeal or fight to get disability. This gives me hope that they believe in me, and are serious about helping me. They see I am not exaggerating or ‘faking it,’ being ‘overly dramatic.’ my mom’s friends sent me a note and flowers this morning. I nearly cried with gratitude. I was also able to see a longtime friend, and go to a play. Two events in one week-that is a record for me! Routine is really helpful. I still don’t feel like eating dinner, but baby steps. I can’t expect to feel ‘normal’ in my daily life, as it is. I do find myself laughing at a show, smiling when someone sends me a message, or when I go outside.  A couple of days ago, I went out and rested on my lawn chair. My Buckeye loves to play fetch; but, once I start, he doesn’t stop. Zack, our other little white ball of fur, curled up next to me, disinterested in chasing a ball. Well, I tried to stop throwing the ball, reclined the chair so I was lying flat, and tried to rest while listening to music. Buckeye kept dropping his wet, muddy, leaf encrusted tennis ball on my hair, so I pulled up my hoodie and closed my eyes. Zack decided that the shade I provided was more restful, so he crawled under my chair and kept bumping my back through the mesh fabric. I was almost asleep when Buckeye dropped his dirty, wet ball, directly onto my lips. Yep, Mary Moment. At least, it was better than my Mary Moments of the past couple of weeks. Those were not funny in the least.

I went to Meijer, a local store, to get some groceries. A very kind looking man and I struck up a conversation. This is not uncommon to me, since I worked retail for decades, and tend to talk to random people. He was very nice, and gave me a hug when he saw tears in my eyes. I appreciated his kindness, and gave him my number. All was fine, until he looked me over, said, ‘honey, you will do just fine,’ and patted my tush twice, and squeezed it! I was so stunned, I didn’t react. I just stood there, then got some groceries, in a total state of dazed confusion. When I went to check out, I decided I had better report the incident. The staff took it very seriously, especially after I demonstrated the pat to an associate. I didn’t think, just copied the motion. I regret it now, but they got the message and went looking for the person. They took my description and information, and I managed to get my groceries in the car. I backed out, heard a noise, and saw a shopping cart on its side in my former parking space. I got home, still in a haze, only to realize that the cart scratched up my mom’s car door! I went home crying, feeling like everything I touched got ruined. I logically understood that nothing was my fault, but I blamed myself. My parents were kind and understanding. I was relieved, since I HATE to mess up. I struggled with guilt and blamed myself for being too open, too overly friendly with a stranger. It wasn’t the first time someone took advantage of me, but I had not had that happen before. It took a lot of Facebook comments for me to realize that none of it was my fault. I don’t have a ‘bulls*%t meter,’ as my friend calls it. I am an ‘Empath,’ I have Fibromyalgia, which means my physical and emotional are inextricably intertwined, and a huge heart. A triple whammy. If I knew how to ‘grow a thicker skin,’ as those less sensitive tell me, I would have done so before my fourth birthday.

So, although this is a longer blog post than usual, it is what is going on in my daily life. I am forever grateful for my parents, my nearest and dearest friends and family that reach out to see how I am, send a note, a prayer, a hug. May you all be blessed beyond measure. I think I have ‘babbled’ long enough for one post. Until next time,

Mary

P.S. Two things I forgot: One, I would NEVER be able to make it for an hour without my faith in God! He is the One to give me my energy, my faith, my hope, and my purpose. The other is another MM: the oven needed to be cleaned, the day I went to Meijer, and I started the self cleaning option. The smoke alarm went off, which is why I was cleaning it in the first place, so I checked the oven. Flames were leaping out the vents! My mom had to go downstairs and find the right circuit breaker switch to flip to at least shut the oven off, since I could not open or stop the process. Ugh.

 

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Lost

Hello.

I don’t know what to write, or how to put it into words. I have had writer’s block for months.  The events of the last two weeks have overwhelmed me, and shaken me to my core. Two weeks ago this morning, I found out that I lost someone. This person was so dear to me, so important, that I cannot describe the pain, sorrow, and grief.  I didn’t tell people on social media. I have only told a couple of people, in person. It is difficult to describe our relationship. I promised myself I would not go into detail or write about it. I only write about it now, because I went to Lake Michigan to drop a flower in the water and say a prayer.  When I got home, I found out that my second disability appeal was denied. To say that I am devastated doesn’t cover it. I doubled over in waves of grief and nausea for a time; then sat for over an hour, staring into the darkness. At times, the tears flowed. I struggle with ‘The Dark Side” the most during the night. To me, ‘The Dark Side” creeps up after sunset, and it is when the thoughts of ‘I am wasted space,” “I don’t belong here,” “It will never get better,” “I have no purpose,” “What’s the point?” etc. get the better of me. I don’t believe in suicide, but this is the closest my mind goes. I argue with myself. I tell myself that my body and brain are fighting one another, that my Fibromyalgia is bad, it is the pain talking, etc.  I always tell myself to just hold on until morning, because I always wake up with renewed hope and a positive outlook.

For the first time, I woke up, and nothing was better. I stared out the window in silence. It took a lot for me to get moving today. My mom encouraged me to run errands with her. I guess it helped. I took a nap, because I did not sleep well at all, as usual. I showered and dressed in my pajamas, my home attire. I vaguely remember a friend of my nephew’s comforting me last night. I am grateful. I have only told one friend, who was kind. I thought of contacting people individually, but it is so overwhelming, I cannot speak the words. Between the two weeks, I have had one disaster after another, Mary Moments to be sure, but not fun ones for me. I feel like, no matter what I do, something goes wrong.

I did see some ‘Signs,’ if I want to label them as such. Some I will keep to myself, some I will share sometime. I have a couple of rays of hope, and then darkness again. It would be great if I could share some uplifting, happy news, but I have none. Reading the Bible makes me feel like I cannot concentrate, because I read it like a novel. I tend to re-read the same chapter and have little recollection of what I have just read. My ‘projects,’ genealogy, scanning my media into digital, archiving paperwork, helping others with their family trees, etc. seem pointless now. A dear friend of mine challenged me to write down my positive qualities months ago, and I still have avoided it.

If I could describe how I feel, it is ‘lost.’ I lost someone. I lost my only way to survive. I lost my purpose, my drive, my focus, and my energy. I don’t want to harm myself, but I want to be in Heaven with my loved ones. My cousin had a baby yesterday, and it kept me from dwelling on the urge to walk in the middle of a busy street. I am unable to separate my emotional from my physical. My friend asked me to be gentle with myself. Not sure how to do that, I confess. For the last two weeks, I have pushed myself by keeping busy, so I don’t have to think of how much I miss my person. I just don’t have it in me. Very little seems important, now. I am forcing myself to keep putting one foot in front of the other. To do what I normally would do. Somewhere,  I read that routine helps. So, I will keep up with the routine of life, until life comes back into my being.  Praying for myself is difficult for me, so if you feel like praying for me, I appreciate it. Good night for now.

My Mary Moments; or, where to go from here…

Hello, readers!

I am sorry I have not posted in a long time. My laptop crashed, because I somehow checked a box saying hidden pictures. I thought it meant to uncover pictures I could not see. It actually made my pictures disappear! My whole system crashed, including all the work I Ihave been doing for months. I was desperately trying not to freak out, and the R-Tech Guys saved the day for me yet again! They recovered all of my files and put them on flash drives for me! Woo hoo! The bad part is, I forgot that they told me not to put them back onto my laptop, which I did. I have 33,750 pictures to sort and eliminate all the duplicates, triplicates, and whatever words there are for the multiple copies I have for the same pictures. (Don’t get me started on my music files. )

I should have mentioned earlier that part of the reason that I have been making copies of pictures is that I have been going to The Hub, which is the media center at the main branch of the Kalamazoo Public Library. Ryan, the intern/computer guru/helper of the helpless and lost, has been guiding me ever so patiently, while I have been not only scanning my own photo albums, but have been scanning photos, slides, negatives, scrapbooks, wedding albums; and converting VHS to DVD and digitizing materials from my family records. By the time I am done at each ‘session’ at The Hub, I have ‘jelly arms,’ because I am in so much pain that I can only move my arms from the elbows to my fingers. My neck, back, and shoulders are so locked up that I have to come home and lie on ice packs and take special medication and cry. I hope it is worth it! I feel it is, and that others feel the same.

I have become our family historian and documentarian. My cousin, Angela, just got married over the weekend, and I am so excited for both she and her husband, James! I spent countless hours, scanning everything on the Greek side I could find, digging deep into our family records, matching photos and documents with the Ancestry family tree I have been working on for over two years. I put together, with my parents’ help, a huge binder that will help Angela and her husband to expand their own family tree and to use it to further their own knowledge of their family history. I put every record, photo, etc I could find onto a flash drive, and let them take it from there. Hopefully, they will use it and it will assist them on their quest.

My Dutch side, as I mentioned in an earlier blog, has been very interesting. My mom recently gave me my Grannie Annie (her mom, Anna Mae Kuiper Griffioen Santee) scrapbook, wedding album, etc. and her father, John Griffioen’s, military album, which he hand made out of wood and rawhide. I was able to recreate it, scan it, and share it with family. It took me two whole days to cut the paper, put photo squares, match the proper photos, punch holes, reinforce, and figure out how he strung the rawhide ties to re wrap the entire album, as it had disintegrated. When I had finally finished, I swear I heard him whisper, “atta girl,” to me, with a pat on my shoulder. I hope I made him proud.

I had a lot of Mary Moments lately, but this one was really odd.

I went to get groceries and I was so hot and tired, so I got undressed and I stretched out on my bed with my legs up on my pillows. I forgot to close my curtains to my sliding glass door, and to my bedroom door; but knew I was home alone, and the dogs would bark if anyone came over.
So, I closed my eyes to rest.
I felt a disturbance in the force, and looked out my sliding glass door to see a stranger. An elderly woman was on our deck, trying to step over our waist high fence. She had a bowl in her hands. At first, I thought she was with my mom, looking at her garden. I jumped up, grabbed a robe, and opened my sliding glass door.
She came back to the fence, tried to open it from a closed section, despite it being next to the door; and I told her to go to the front door, the orange one. I went to the front, and I
found her wandering in the front yard.
She had a small bowl of blackberries for us. I did not recognize her; and strangely enough, the dogs never barked before I opened the door.  She didn’t make any intelligible sentences; but, from what I gathered, she was giving me these berries.  I said thank you very graciously, asked her if she wanted her bowl, and she kind of shrugged and wandered off through the front yard. I watched from our kitchen window. She vanished-
no car, nothing. So, I thought, ‘either she is a neighbor, or one of those angels in the Bible that check to see if I would be nice to them!’ hmmm.

Another Mary Moment I had was at the wedding. I was the last one to leave the chapel, next to a man in a suit. I asked if I could take his arm, thinking he was an usher or groomsman. He was very gracious and agreed. I explained that I had horrible balance, and didn’t want to fall into the little pool next to us. He said that his boys would be most likely playing in that little pool! I laughed and said I have nephews like that. We stood in silence, waiting for the line to move. Then, he politely excused himself to check on his boys. It was then that I realized that he was not an usher, he was a guest at the wedding! Oh, boy.

I am planning on focusing my blog more on one topic, maybe two. I am thinking more on my Mary Moments and my Fibromyalgia. More specifically, what it is like to live with chronic pain and how to not only survive, but keep a positive outlook. I would really like some ideas and feedback as to what would be most helpful! Please comment below, because I tend to get all over the place with random thoughts and ideas!

 

Not again…

In February, I wrote a blog about the shootings in Kalamazoo, my hometown. On June 7th, my town suffered another major tragedy. A group of bicyclists, called, “The Chain Gang,” were struck by a man driving a truck. Nine people were injured, and five of them were killed at the scene. One of them, Debbie Bradley, was my mother’s friend. One of my friends lost two dear friends. I know one of the first responders. Although I didn’t know them personally, as it happens so often in our town, we are all interconnected somehow; and we are all grieving. I have been numb, in shock. I haven’t written about it, because I have been so upset. Then, the tragedy in Orlando. That hit me hard, as well. I cannot imagine what that was like for anyone involved! Horrific. How does this happen to anyone-these people were just out to have fun, and then to be shot and killed?!? This happens all over the world, every day. Innocent people hurt. No warning, just living their lives, unaware that their worlds are about to change forever.

The cyclists were obeying traffic laws, and out for fun and some exercise. The driver was acting erratically, and was just charged with driving under the influence. A large group of cyclists did a silent ride through downtown, and Lance Armstrong came to Kalamazoo to finish the original ride The Chain Gang never finished, due to the tragedy. I cannot tell you how much that meant, and it is a huge part of the healing process. Thank you, Lance. Kalamazoo appreciates you!

I cannot tell you how this has affected me. I have been crying, depressed, overwhelmed, and hopeless.  Our town has been struggling as it is, and this is just a double whammy.  My heart just aches, and it is so hard to stay hopeful and cheerful. It has put me in a blue mood for weeks. I am just now starting to feel like there are rays of hope, moments where it is okay to go on and to keep living, when there is so much sadness in the world.

Our town is not free of crime, but this is so hard to understand. Why did this happen? How can anyone feel happy and hopeful? When it is going to feel normal?  Some children were asking me some questions, and I tried to answer them as well as I could; but how do I answer them, when I don’t know the answers myself?

What I do know is that life should never be taken for granted, treated lightly, or wasted. Please be kind to one another. Blessings, Mary

 

My Papa

Hello, Readers!

Today is Father’s Day. I want to share a few things about my dad. His name is Mike Skartsiaris, and he is a very dedicated and hard working man. He worked for his father in the restaurant business, until he decided he wanted to be a mechanic.  My mom and dad married at 19, and they had me at 20. My dad lost his two jobs when I was born, so he made money by fixing friend’s cars in our driveway. My mom took me to auto parts stores and body shops, running parts to him. Some people think of apple pie when they think of scents that remind me of home; I think of gas, oil, STP, and WD-40! They still make me smile, and I get excited to go to parts  and home improvement stores! I have been in the garage since I was in diapers! Later on, my dad ended up working 2nd shift, and my mom would keep me awake to have dinner with my dad, since that was the only time we could spend together. To this day, I am still a night owl!

By the time I was a toddler, he had graduated from college; and was the head of the Vocational Education Department at Kellogg Community College. I would ride on my dad’s Honda 750, holding on to the gas tank while we went to KCC.(perish the thought, now!) I would go to preschool, while Dad worked. I still remember the Quanset Hut style bay, cars of various makes and models; some up on the lifts, some taken apart and scattered around, and some with hoods up and young men in coveralls, working on the engines.  My parents raced at Martin Speedway, in his 1955 Chevy Bel Air convertible. In later years, my brother would do the same; I raced the same speedway in a van!

My dad is the hardest working man. He is always trying to do better for our family, to put in the hours to improve our lives. It didn’t stop him from being too tired to play catch or Frisbee for hours, or to take us to Lake Michigan or the park with my mom.  Having a family of five by the time he was 28 was a huge responsibility, but he never let it show.

When he was offered the service business section of Zimmerman Plumbing and Heating, oit truly became a family owned and operated business. My mom was the office manager, and I cleaned the office, sorted parts, changed the letters on the elevated sign, and washed the service trucks. After a while, I was able to earn enough money to pay for my first car, a 1964 Ford Falcon. My dad traded in a van for the money to pay for my car, and I worked to pay him back. Eventually, my brother and sister started to work there, paying for their first cars; and my father, sister, and brother all are employed there; with the same work ethic that he as always instilled in each of us.

My dad went back to school, even with owning a business and raising a family. He eventually earned his Master Plumber’s license. He has an excellent reputation in Kalamazoo, and he is one of the few that can work on radiant flooring and in our historic homes, doing  plumbing and heating work that is a lost art to many plumbers. My father is known for being very intelligent, honest, fair, and respectable. Some companies have even given him some challenging jobs, and he has been able to figure out new ways to make the impossible possible. When people speak to me about my father, their tone gets serious, and they always say, “I have a great respect for your father. He is a very hardworking man, and a good one. “

It was always a joy for me when, whether at work or out and about, for people to stop me and tell me about my father. Some tell me about how he saved them from a cold house, freezing pipes, or flooding basement. Some tell me about his humor, but all tell me about how much respect they have for my father.

The picture above has always been my favorite. My father and I were walking on the beach in winter on Lake Michigan; and I was asking him about serious subjects, like Vietnam, the Kennedy assassination, or politics. He never spoke to me as though I was too young to understand what he was saying, but he always tried to make it as simple and honest as possible. Even if he couldn’t give me all the answers to the many questions I had, he pointed me in the direction I sought to discover those answers myself. Sometimes, he would answer them in one simple and precise sentence, helping me to see that the answers do not have to be complicated to be understood.

When I was about 18, my dad and I had a shift in our relationship, and I saw him as a human and a man, instead of my invincible hero. I think that we adults all have that moment, like when we realize our teachers have first names and lives outside of the classroom. Even with the ‘shift,’ I love him all the more for it; because it makes me see how heroic he truly is, and it made me see him with all the frailities and vices and courage and strength he has; and it truly awed me-still does.

His father and father in law were  also very hard working men, and they are cut from the same cloth. My mom and dad are polar opposites; but maybe that is why their relationship works. I joke to friends about how different my parents are, in relation to how they see a task. I say, “You give my mom a fork, a string, and a napkin, she will make a little kite. You give my dad those materials, and he will have to make a schematic, some algorithms, charts, protractor, and a level first.” lol

I have long said that I am blessed with my dad’s brain and my mom’s heart. I am able to see ‘the big picture,’ and do the minute details to finish the job. My dad is really amazing when it comes to anything mechanical. We spent countless hours together, working on cars and school science projects, as well as homework and school projects.  We  had ‘date night,’ where he would take me out to show me how a lady should be treated.  My prom was very special to me, because my dad shared his car and his time with us-I love the picture of us hugging at a park. My graduation was a big deal, as well as all the other milestones of my life. He has graduated, as well. He has gone from the title of, ‘Dad,’ to “Papa,” now that he is the grandfather of six! It suits him-he is too cool to be called, “Grandpa!”

This isn’t to say that I never got into trouble!   If I did, he would lay one palm flat, and make a slicing motion with the other, known in our family as “The Chop.” If we saw that, we were in big trouble! The worst was when he would sharply suck his breath in through his teeth, and the temples would throb. My siblings and I would know that we could not move a muscle, nor make a sound-not even an audible breath!

One of my favorite times spent with my dad is when we took the ’55 up to St. Ignace for a car show/swap meet when I was 16 years old. He let me drive the ’55 with the top down at night, over the Mackinac Bridge after cruising on a Saturday night! Halfway through the Mighty Mac, he said, ‘look up.’ I was scared to death, white knuckles on the steering wheel. He insisted; and, when I did, there was the Milky Way, surrounded by an endless array of stars. We had such a great time Up North, and he even let me drive the ’55 through the “S” curve of Grand Rapids, which is very scary to a new driver! I was doing well, until a rusted exhaust pipe was in my lane. I couldn’t swerve, afraid to hit the wall or another car, so I tried to run over the pipe on a dented part. My dad didn’t say a word, but he sucked in his breath so sharply that he made a hissing sound. Neither of us took a breath for the entire hour ride home; and I never drove the ’55 again! lol

Because of my dad’s love of machines, I also have a great love for cars, ships, motorcycles, and anything with a motor. We also share a of war movies, Star Trek, Johnny Carson, and other late night TV, since I would stay up late and watch them with him; happy to spend time with my dad. I was always his ‘co-pilot’ on road trips. He would ask me to  watch for deer, signs, etc. Even though he never missed a thing, he would always thank me for telling him what exit was coming up, or what I saw on the shoulder of the road.

We still get to see each other often, since I moved in with my parents four years ago. He is gracious enough to allow me to store the contents of my former one bedroom apartment in his garage. It takes up a lot of space, and he never complains; and he makes sure the temperature is suitable for my belongings.

I could go on and on about him, but he probably would get even more embarrassed! I love my dad so dearly, and I am glad he is my “Papa!”