The Queen of May

406769_10203138472329351_795666238_nWhen I was a little girl, I loved going to my Aunt Vickie’s. Her home and business were in the same building. My Uncle Gene always had a car lot and a garage but my Aunt had different businesses at different times. As a child, there was no place any more fun than their house.

The house itself was always a fascination to me. It was so different from our own. She had red velvet curtains and black leather furniture. She had big metal bulls with gold rings in their noses and matadors that were four feet tall with sweeping red capes that seemed to truly taunt the imitation bull. She had hanging bird cages with considerable winged imitation birds that I was sure was looking at me no matter where I was in the room. There was a large stereo with more velvet that lined the doors. There was always twangy country music coming from it.

Vickie was just as colorful as her home. She always had her hair piled high. She always wore a hair piece that was curled into sausage like ringlets. Wisps of hair curled and set just so around her face. She always wore false eye lashes, her eye make up matching every outfit. Her clothing was always so bright and colorful and I can remember her kicking her shoes off and dancing around the room to some old song that came on the radio. She wore rings on every finger and lusty over-sized earrings. She would get so tickled. She always seemed so uninhibited to me. She seemed so fearless.

I remember her having a restaurant, I was really little then. I don’t remember much about it other than the wonderful smells of home cooking. However, she then had a beauty shop. Mother was also a beautician and I went to work with her a lot. Here, though, I could really play. It was in the 1970’s and wigs were all the rage. There were a row of chairs that pumped up much higher than I was really allowed to pump them. There was a long mirror behind the chairs with an eclectic group of ephemera. Advertisements for hair products, Final Net, Toni Perms, Dipity Doo. Pictures of up-dos and beehives and of course, the famous Farrah hair. On a shelf above the mirror, I guess it may have more of a ledge, there were little white Styrofoam heads lined up. Some had little wiglets, some had hair pieces to make the tallest hives. Little brown or grey heads of hair, rolled up in pink and blue rollers, netted in little green hair nets, just waiting on their owners to come in so Aunt Vickie could fashion their hair in the latest trend.

On the counters, combs, brushes, clippies, bobby pins, things to tease hair, things to smooth hair, things to section and wave hair. The glass jar of blue liquid that cleaned the combs. The toaster oven thing that dried the hair brushes after they had been washed. The stacks and stacks of towels. A job I have loathed my whole life, folding all of those miniature towels. I would give anything to fold those towels today.

Oh! The magazines! Gossip magazines! Donny and Marie Osmond, Sonny and Cher, Starsky and Hutch, Shawn Cassidy, David Bowie. The actual TV Guide! Better Homes and Garden’s magazines filled with jello salad recipes. Cosmopolitan, which I was in no way allowed to read.

It was so much fun. Playing Beauty Shop. Answering the phone and making pretend appointments, working our customers appointments in the way we had heard the grown ups do.We would wash each other’s hair in the shampoo bowls, roll up strands of hair, using six clippies on each roller because we could never get the rollers to stay in place. We sat on the booster seats at the dryers, reading the magazines, having pretend conversations about all the drama we could think up. We played grown up. We played  Mom and Aunt Vickie.

There was a little store between the house and the businesses. It was where you paid for your gas or bought a snack or pop for the road. There was an adding machine, a cash register, phone, a bell that rang for someone to come to the register. There was a cabinet full of glass shelves that held truck-stop fare. Rolaids, tooth brushes, hair nets, pantyhose, candy, gum, matches, nail files, rain bonnets, chapstick, pens and pencils, little spiral tablets and assorted cigarettes. We would play store, taking turns being the cashier. We ate all the candy and gum we wanted and made terrible messes, Aunt Vickie didn’t care. She just wanted us to have fun.

When we got a little older, she had a camper set up at a camp site each summer. We would go and have cookouts and swim. We played games and rode bikes. We ran around in bare feet and swimsuits, begging money for the concession stand. We always had fireworks and flashlights. There was always tons of food and cans of Faygo. We piled into a small bed, dirty feet and wet heads, laughed until the wee hours of the mourning, then got up with the sun. She made sure we had everything we wanted. She ran around attending to all of us, kids and adults, making sure every need was met.

Eventually she put a pool in at her house and they built a pond. She was always all about having fun. Having the whole family over. Having all the kids over, their friends, the more the merrier. She would run around and yell at Uncle Gene to hurry up and get something done and laugh at everything.

I have talked a lot about the strength of the women in our family. She was no different. She lost her only son and then raised her grandson. She held everyone together as best she could for so many years. We would get together for a holiday and something horrible would be going on and she would sit at the table, playing rook and laughing until tears ran down her face at something one of us was telling her. She was a rock.

I had my first child when I was nineteen. She was there. She was always there. The only one she missed was my last one. Belle came to quickly for anyone to be there.

When Kennedy was born, she was almost seven weeks early. I was in the hospital in Anderson and they were taking us to Indianapolis because of their neonatal unit. Mother, Grandma and Aunt Vickie came. I was in labor for five days. They never left me. The first few days, the doctor’s were trying to stop my labor. They had so much medicine coursing through my veins, they also kept me fairly high on a new pain medication that had just come out. Nubane. Good gravy. I’ve never been happier in my life. I had a constant grin on my face. That shit was awesome. It also made me HOT!! It was February. In Indiana. It was probably two degrees outside. I was lying in my hospital bed, in my gown, no covers. I had the air conditioning on in the room and a fan the size of an airplane rotor at the end of my bed. Still, I was hot. My family of women sat in a row on the couch in the room, in their winter coats, covered up with blankets, and never left me. They kept me entertained the whole time. Vickie had become a nurse by this time. I was freaked out a bit, to say the least. Happy…but freaked none the less. Every time they wanted to do something to me, I’d look at her and raise my eyebrows. This was secret code for, ‘What the hell does that mean??’. Eventually, thing started to decline and they decided to go ahead and let me have Kennedy. They were going to put an interior heart monitor on her head and they explained that I wouldn’t be able to tolerate it without an epidural. I was scared to death. I asked if my Aunt could stay. I sat up on the edge of the bed and leaned over the bedside table. Aunt Vicki was on one side of me, shivering, and the anesthesiologist on the other. He explained step by step each part of the procedure as he did it and Vickie would dumb it down for me. Tana used to call this ‘Tana’s terms’. My Aunt would start explaining something medical and Tana would say “Tana’s terms please”. She got me through it and she had everyone in the room laughing. Because that’s what we do. We get through it and we do it with humor and tears.

My Aunt Vickie died yesterday. I can hardly stand it. She has always been my go to person when I needed something medical explained. She has always been my second opinion. She is where we have Thanksgiving and Easter. She is truthful to the point of ass sometimes. She was part of a group of women who raised me to be who I am today. She also raised tw o young women who I love so dearly,

Vickie Ebbert Christie was ornery, witty, tenacious, unshakable, unwavering, veracious and my favorite Aunt. I will miss everything about her. She is in Heaven today, most likely dancing with my Uncle Gene and she is so happy to see Shad. She never stopped missing him, I don’t think it ever even lessened. She is with them now. She is with my Grandparents. My Grandma and Grandpa were so glad to see her, I have no doubt. And I’ll bet you a dollar, she went and found Elvis as soon as she said hello to the family. If you knew her, you were so lucky. If you didn’t, I hope you got a little taste of her here. She was a bright light that never dimmed. Rest in peace, Aunt Vickie. I love you.

Pantsuit Nation is saving my life

I will be fifty years old in January and I no longer have a uterus. I wake up every morning feeling ill. It’s as if I am pregnant again. I have to slowly acclimate to the reality I now live in. One of fear and astonishment.

I live in rural Arkansas. My kids and I are with Hillary. Not a lot of people around here are. Let me rephrase that, it’s us and like six other people.

I have used this blog for a way to purge my soul. I haven’t posted in it in a while. Life, Multiple Sclerosis, the insanity of this election, it’s been hard to be motivated. This monstrosity has motivated me.

I have two daughters, two daughters in law and countless young women in my life. I have tried to be a good example and a strong advocate for them. I am a talker. I want to talk with them about everything. I feel as if they need the guidance of someone who cares deeply about everything in their lives. I don’t know how to talk to them about this. How do you explain that someone who is so disrespectful to women is our President? There is no way to make sense of that. How do I talk to my sister-in-law and niece who are from India. Because their skin is brown, so many people tell them to go back where they belong, call them terrorist. They live in New Jersey!! If this is happening there, what do you think is happening in Arkansas. What do I say to my sister-in-law and my two nieces and my great-nieces who are Mexican? They are scared to death. They are here legally but that makes no matter. Idiots scream about building a wall to keep them out and sending them home. They live on Hilton Head Island. I have mixed race cousins and friends of all races. What in the hell do I tell them??

As a white women with a white husband and white children, I don’t want any of them to think that I don’t empathize. I cannot say I know how they feel, I never will. However, I am afraid for them. I am afraid for me.

This election has validated everything wrong in this United States. It told the ass hats in Northeast Arkansas, along with everyplace else in America, that is okay to spout racial slurs at anyone who isn’t white. It has spoken loudly that men may treat their women with disrespect, that is okay to grab what they want and take what they want. How do I tell my daughters that it’s all going to be okay?

How do I embrace any of this pathomania? How do I lead? I have fervently prayed about how to lead and teach all of my girlies. The answer has been simple. Talk. Help. Wear the safety-pin. Keep up with the things that our Government will spend it’s time doing for the next four years. Educate yourself. Consider running for office. Find a way to make a difference, everywhere you go and with anyone you see.

I also think that it is important to remember that not all Republicans feel a warm fuzzy for Donald Trump. I will tell my girls to not be mean. Trump supporters can be mean. They can be rude and hateful. I want them to know that they can disagree and stand their ground without being ugly. When confronted with bigotry or misogyny, stand firm. Use mace if you have to, but don’t sink to their level. Calling someone a ‘dumb f***ing redneck a**hole, whose sister is his mother’ isn’t appropriate. That makes you just as ignorant as they are. You can’t preach equality and standing together if you seek to annihilate people we have to share the world with.

I want to touch on one more thing. Being a Christian. I am a God-fearing woman. I was raised in the church and I have a love of the gospel. I am also a liberal. Those two things can actually go hand in hand. I am so sick of the idea that if you are a liberal, you are a Satanist. I know that there are Satanist out there, I respect your right to practice your religion as you wish. Just as I have the right as a Christian to be liberal in my beliefs and practices.

This has to start with you. Yes you. Only you can turn the tide of hatred in this country. Only you can make someone feel welcome and secure in your presence. Only you can make sure every one you come into contact with knows you are a safe place to fall. Only you can step in and stand firm when you see people being mistreated. We have to make our voices heard. Right now, we can’t hear anything over the clamour of last Tuesday’s debacle. Be louder. We have to be so loud that the love drowns out the hate.

Peace and love to you all. Find a friend and make a plan how you are going to wade through this sludge together. Looks for ways to overcome the obstacles that will most likely surface. Talk about what is going on. Purge yourself. It helps to release the demons. Hold your head high. Young people are looking to you. Act accordingly. Start a movement. Start a blog. Start talking. Turn the tide.

Don’t be an asshat

I’m beginning to think I’m odd. Oh, hell! Yes, I know I’m odd. Stop rolling your eyes at me. What I mean is I guess is, I’m unique. There you go again, rolling your eyes. What if your face sticks like that?

I can be cranky. I feel like crap. A lot. I can be short with my children and husband. Like maybe if I’m reading something or looking at Pinterest. Maybe I just found the perfect door wreath for Christmas and it’s listed on etsy for $612. I need to really look at that crap because there is a possibility I am going to run right out to the store and buy all the crap and make myself one, saving $3.16. This is highly unlikely, as I am the biggest procrastinater in the world, but it could happen. The point is, if they are trying to tell me  a trip to the ED is required, I wouldn’t be as crabby if they would wait until I was done writing my supply list down for that stupid wreath.

Other than those minor issues, I’m usually patient. I am also empathetic. That’s what this little soliloquy is about, really. Being empathetic. Sometimes I think that finding an empathetic person is sort of like finding a unicorn. Well, I am that person. Unless my hair is a mess, you should probably take a picture of me the next time you see me. There aren’t many of us out there.

  • : the feeling that you understand and share another person’s experiences and emotions : the ability to share someone else’s feelings

That is the Merriam-Webster’s definition of empathy. Mine is, treat someone how you would want to be treated.

I have tried, sometimes successfully, sometimes not, to hammer this into my children’s heads. Kids are mean. They can be total asshats. Doesn’t matter. You treat someone the way you want to be treated. Now, I’m not talking about bullying. That’s a whole different story. I’m just talking about the normal high-school, hormone driven drama that we all experienced on a day-to-day basis. Be nice. As Tim McGraw says, “Always be humble and kind.”

You expect the sort of selfish, rude, asshatty behavior from kids. We don’t like it. We wish it would go away. Some days, it’s all I can do not to pick Belle up by her cheer skirt and fling her about the room. Hey! That’s what teenagers do. I’ve done this four other times! I get it. What I don’t expect is, that adults act the same way. Women are the worst. I didn’t realize this growing up. My Mother didn’t gossip. She still doesn’t. In fact, I have had someone share pretty juicy pieces of gossip with me over the years and asked my Mother in hushed tones if she thought things were true. More often that not, she already knew. And let me clarify here, gossiping, spreading gossip, being malicious and stirring shit are not the same as asking your Mom. Just sayin. My Mother believed that if you were trusted with a secret, you kept it. She also believed that you treated people with care. Even the ones who didn’t deserve it.

I got my feelings hurt today. I don’t think it was something that was done on purpose. That isn’t even figured into the equation. I don’t understand why people don’t stop and think. I have taken this to an almost pathological level. I don’t want to hurt anyone’s feelings. When plans are made, I make sure everyone is okay with the arrangements. Several times. I’ve had that special cookout on two days because it wasn’t going to work for someone. I go overboard making sure everyone feels included. I treat my almost children with the same regard as my children. I think that’s the way things should be done. Never, ever, would I exclude someone. Not on purpose, on accident, oversight, stupidity, whatever. What I am trying to say is, I purposefully, with great care, tend to the feelings of my loved ones and friends.  I don’t want anyone to feel less-than. I don’t want anyone to think they aren’t wanted. In a very purpose-driven way, I try to make everyone feel special. (Yes, I do have those people who I want to throw up on, but swallow that right back down) Why aren’t we all like that? Or at least partially like that, I’m kind of crazy about it. It is something that hits home for me in a very personal way, so naturally I try hard not to upset an apple cart that could have easily stayed on all wheels. However, with some people, it’s as if they have never even heard of the concept of thinking of other’s feelings.

I don’t think there is an answer for this. You either get it or you don’t. My Mother taught me the lesson of empathy. I didn’t learn it early. I’ve told you what a meany I was. I did learn it when I had children and dealt with apathy instead of empathy on such a staggering level. I thought it would get better. It doesn’t. I hear you saying ‘Let it roll off of your back!”, and I try. Sometimes, though, it makes me want to weep.

If you are someone who doesn’t have empathy, and if you have never considered it before, let me assure you, you don’t, try it. Before you do things, think! How is this going to affect others? How will this affect my co-worker, my friend, my spouse, my parent. Now don’t shake your head at me. You also have to have some common sense about things. And frankly, if you are confused at this point, you don’t have that either. Just quit reading and go back to Facebook and watch the video about Ellen showing Michelle Obama how to be normal. For the rest of you, the ones that aren’t cross eyed at all the big feelings right now, give it a try. Not hurting someone’s feelings by considering them as important as your own is very empowering. It’s nice to feel nice.

What I am saying is, I’m that freaking unicorn!! How often do you see a UNICORN?? I don’t have the horn, but I do have a lot of glitter. Primarily left over from all of those vile Pinterest projects. Come closer and I will sprinkle you with a little….Unless you don’t want me to. I would never want to hurt your feelings….

 

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Praying for a cure

I have found my state woefully lacking in Multiple Sclerosis treatment. I don’t want to just sit and feel my body deteriorate on a daily basis. I am going to aggressively search for an option that will help me. I am going to begin one of many fundraisers today. This will be quite an expensive journey. I hope you will follow me and we can find new things together.

When I was first diagnosed with MS, the neurologist I had prescribed a medication for me that was supposed to slow the progression of my disease down. It wasn’t until I quit walking and stayed in Health South Rehabilitation that I learned how truly lacking my treatment was being handled. At Health South, Dr Verma began testing to set a baseline on all aspects of my health. This will be used in all future testing to see any decline and to measure the rate at which things are progressing. This is extremely important for an individual newly diagnosed with MS. I had no idea. It was then that I knew I was going to have to be my own health advocate. Ken calls me a ‘Googleologist’. I know our healthcare system is badly flawed, for whatever reason. I am not interested in a political discussion on said flaws. I think we can just agree on the fact that a patient in today’s health market needs to be as well versed as possible concerning any health issues.

The first time I heard anything about stem-cell treatment was from a friend of our family, Gloria Williams. Gloria had a friend who was diagnosed with MS and had progressed poorly. She went to Russia for a stem-cell transplant and is, for all purposes, cured. I began to do research on this procedure. This is the only viable treatment that stops the progression of the disease and repairs and restores function that has been lost. The MS Society is currently supporting 12 research projects and has supported 68 stem-cell studies in the last ten years.

The simplest way to explain what a stem-cell transplant does is, it reboots your immune system. It’s a difficult treatment. First, you go through chemotherapy in order to kill your immune system. Your stem-cells, taken from your body, are then reintroduced. The new stem cells migrate to the bone marrow and over time produce new white blood cells. Eventually they repopulate the body with immune cells.

This is my biggest adventure. It will require a LOT of fundraising as no insurance will cover this treatment. It will most likely take me at least a year to raise the money to have this done. I hope you will all follow my progress and keep me in your thoughts and prayers. This whole situation is hard on my family, as anyone with chronic health issues will recognize. Our prayer is a cure. God is good all the time.

Please share my story, my blog and my fundraisers. I know everyone wants money for something, I appreciate every penny donated.

Thank you for always fighting the fight with me. Thank you for your prayers and positive thoughts.

Here we go….buckle up and hold on!

https://www.bonfirefunds.com/org/traceyhainesvoyles

 

There’s always a holiday to celebrate

Holidays make me a little crazy. Ok, a lot crazy. I am thrilled when I can start planning the decorating and the food and the movies and the pictures!! It doesn’t matter what holiday. We even celebrate Groundhog Day and Flag Day. Oh my goodness! The new days they have! Ice Cream Cone Day! Hitchcock’s Birthday! Donut Day! We don’t miss one if I can help it…..and remember it.

I not only love holidays, I love decorating for them. I want to enjoy the decorations as long as I can. So Halloween begins in September (if I can wait), Christmas starts the day after the Halloween decor comes down. Thanksgiving? Of course. But the Pilgrims stand by the Christmas tree.

When the kids were young, this excited them. They couldn’t wait! Then we hit those stupid pre-teen days. “Moooommmmmm! Are you really going to put the Christmas lights up now? All the kids on the bus laugh!”. Did this deter my excitement? Nope. Our job as parents is to embarrass our children as much as possible. So the lights go up.

I’ve had a bad summer. I’ve had a hospital stay and I can’t go outside. I haven’t been out in our boat since Memorial Day (which we totally celebrated with every flag-like thing I could find). I am used to Ken hopping up at two o’clock in the afternoon and saying “Let’s go get in the boat”. We have always been on the water at least three times a week. Not once since Memorial Day. Too damn hot. I also can’t sit on my porch. Front or back. I can’t stroll down to the boat ramp and dip my toes in. No flopping off of the dock onto my raft and floating with Belle. No laying on the hammock for hours and reading. I have actually threatened to bring the hammock inside. It would fit nicely in the dining room. Or maybe in the living room in front of the glass doors. I could turn on the fan and play cricket sounds on my iPhone.

Instead, I have blogged and played cards with Belle. I have listened to audio books. I hang out with Ken when he is home and I look forward to Sundays when all the kids come up. Oh, and of course Karter. He has gotten me through this summer. He is the most fun ever.

It’s been storming here for three days. I know the farmers hate it. I know that women hate it, it ruins their hair. Guys hate it because you can’t catch fish or mow anything. Ken loves to burn things, you can’t do that in the rain either. I don’t mean he is a pyromaniac or anything, but he loves to dispose of crap with a gas can and a match. I wouldn’t tell just anyone this, only you, my faithful readers, but I LOVE IT!! Haha!! It’s cool and the house is dark. It smells good. And it has put me in the mood to decorate for Fall.

Actually, the Yankee Candle Company started it with the new fall candle line at the Cracker Barrel. I bought one. It’s been hell on wheels holding off after that. Then Bath and Body put their new fall line out. We shouldn’t even go there. Going through all the new scents, I was a little crazed. My hair stood up all over and I began to form a hump on my back. Children ran to their Mother’s, people tried to shield the elderly. The cashiers trembled. I could hear the collective sigh of relief when I finally drug my tail out of the store.

So here we are. Rainy weather. Fall candles. That new pumpkin hand soap at the kitchen sink. It’s all over but the applause folks. The Fall decorating has begun. When Belle gets home from school she will be mortified. She will beg me to take the pumpkin wreath off of the front door and the leaf swag off of the mailbox. She will pick up my ‘Happy Fall Y’all’ chalk board sign and scream that it ISN’T FALL!! I will giggle and hand her the cookies I’m baking for her for her first day of high school. That will soften the blow somewhat, but when I put The Legend of Sleepy Hollow on when we cuddle up on the couch tonight, she will be all good.

The bottom line here is, I am happy. I can’t help it if the rest of you think it’s too early to put the life-size Michael Myers Kade made for me last year out on the porch. Or hang the six-foot ghosts from the huge tree in my front yard. Or rearrange my living room around all the ghosts and goblins. I am happy. This all means I am going to be set free from the confines of my home. Not that I don’t love my home, I do. But I want to be outside. I want to walk down to the lake, even when it is cold. I want to watch the herons and wait on the pelicans that come in the fall. I want to get tired  from doing work in my yard and come in and have a pot of pumpkin flavored coffee and watch Halloween. I want to watch the scary movies and all the Halloween cartoons and be tickled that my house looks so cool. Oh, and of course, costume planning. So what if I do it in the middle of August. What’s it really gonna matter in a hundred years.

I hope one day, my children will decorate for every holiday with their families. Way too early.  I hope they embarrass their children by putting up the Valentine decorations as soon as they take the New Year tree down. As they have gotten older, they have begun to appreciate this about me. They still laugh about my crazy decorating habits. However,  when I call and tell Kendall I hung the Autumn wreath he sent me a few years ago and that I watched Silver Bullet today, he will come home from his trip to the US Open and start taking his Halloween decorations out of his garage. I’ll get a picture of the first thing he puts up and he will most likely watch Donald’s Scary Tales.

Then I went blind

I was prowling around Wal-Mart one day in March of 2014. I was by myself and really wasn’t after anything important, I was just sort of filling up some time while Belle was at cheer. Suddenly I had this incredibly sharp pain in my right temple. I actually saw stars. It was quick, though and there was no real lingering pain. I came home after I picked Belle up and told Ken what had happened. I had been having a few vaso-spasms in my brian, they were painless and usually made me dizzy. This did neither. I made light of it and neither of us gave it much more thought. I woke up the next morning and noticed I had a vision problem. It wasn’t that things were blurry, rather I had sort of a vertical line across my vision. They next day it was worse. I told Ken that I thought this was odd and I called my family doctor and we went in that day.

Dr. Green’s initial reaction was that I most likely had a detached retina. He made an appointment with an optomistrist in town. At this appointment, he basically just looked in my eye. He did a visual acuities test and reported that he could see something but that I needed to be seen by an opthamologist. Dr. Green made that appointment for the next day.

I went and saw Dr. Nix the next day. He is the cutest thing! He ran several tests and gave me some eye drops and scheduled an appointment for the next day so he could do some more extensive testing. He did another visual test that day and that was the first thing he did at my second appointment. At the second appointment, I was completely blind in my right eye. That was the first time that Multiple Sclerosis was mentioned.

An MRI was ordered and an appointment was made with a neurologist. Now I should explain here that I was completely freaked out. To start with, I was blind in one eye. Add to that, I had to have an MRI done and then, of course, I was facing the possibility of being diagnosed with a debilitating disease. I had the MRI done the next day and the appointment with the neurologist later in the week. I would also like to point out that I thought I would have an MRI and the doctor would look at the test and say ‘Yes, you have MS’ or ‘NO, you don’t have MS’. No one tells you that this is going to take a YEAR to diagnose.

When the results came back from the MRI, I was diagnosed with Sudden Onset Optic Neuritis. I had an extensive history and physical done that day and then I was sent home. We would ‘wait and see’. Really?? So I went home to a freaked out family, freaked out myself and we waited.

The stress from all of this caused me to have a lot of coronary artery spasms (CAS). I ended up in the hospital and when I saw my family doctor and we talked about what all was going on, he ordered a lumbar puncture. This scared the crap out of me. Of course I turned into Dr. Google. Sometimes the internet is a bad place to roam around. The day arrived to have this done and I was a basket case! It wasn’t even that bad. The worst part of it was how HOT and shaky I got. Have you ever had a part of your body go so asleep that it tingled madly and you couldn’t move that part of your body? That’s what happened to me during this procedure. My lips and arms and hands were tingling so much that I couldn’t move my lips or my hands. Of course I came a bit unglued, and it made me cry. I don’t ever complain. I try to be as good a patient as I can be. The nurse in there with me noticed I was crying and came around to my face and asked me if everything was ok. I told him what was going on and he said that sometimes happens. He got me cold wash cloths and placed them on my neck and gave me one for each hand. My hands were in this claw-like state, so he just laid them across the back of my hands. Now that I knew this was a normal reaction and I wasn’t going to be paralyzed (yes, I often go off the deep end), I calmed right down. The tingling lasted until he removed the catheter and it quit almost instantly.

I waited three weeks on the results. They came back negative. They look for oligoclonal bands in the CFS to indicate inflammation related proteins. There were no bands present. This however does not definitavly rule out MS. There is no Multiple Sclerosis test. They basically rule out everything else that could be wrong based on test results. They take all of your symptoms and test results and put together a puzzle. If all the puzzle pieces fit together a certain way, you get an MS diagnosis. What I didn’t know then was that you will not have those bands present if you are not in a relapse at the time of the lumbar puncture. Based on these findings, we started testing for EVERYTHING else. I gave 14 viles of blood and they got busy. Slowly as the results came in, everything came back negative. So I waited.

I woke up one morning and got into the shower. As I was washing my left side, I noticed that I was numb. In fact, I was numb from my armpit to my feet. I was numb from my belly button to my spine on the left side. I called my doctor and he did an x-ray. He determined that I just had severe muscle spasms and they were pressing on my nerves and making me numb. That’s what it had to be. I didn’t have MS, remember? I got muscle relaxers and was sent home.

My heath slowly declined until I was hardly getting out of bed. I started having this new issue. My eyes ‘clicked’. At that time, it was the only was I could describe it. I told Ken and my doctor  and I got an eye roll. This was in October. It steadily got worse, I kept complaining that something was wrong. No one heard me. That’s not fair, I think they heard me, they just didn’t have the answers. In March, I started having artery spasms again and ended up in a cluster. I told one of the doctors I saw about my ‘clicking’. I had a neuro consult and she requested an MRI. The news wasn’t good. I had at least six new lesions. Another lumbar puncture was ordered. It came back positive. I had MS.

I knew I had this disease way before anyone else did. I knew there was something terribly wrong with my body. It added up to me long before I got the diagnosis. Still, hearing the doctor say “You have multiple sclerosis” was devastating. Mother and Belle were with me at the doctor’s office when he delivered the news. In my head I knew it, so I could handle it. Sometimes I am so silly. It made me cry. I think I scared my poor Belle. I cried, she cried.

We began discussing treatments and we decided to go with Copaxone. An injection three times a week. My neurologist wrote several drug options up on a little dry erase board, quickly hit the high notes for each drug and based on minimal side effects and three injections at home instead of five injections or going to an infusion center, I chose the Copaxone. As I sit here a year later, worsening all the time, I look back and think “Wasn’t this an odd way to decided what medicine would be best for me?” How in the hell would I know that this is one of the weakest MS medicines there are? How would I know that I should have been through a myriad of testing to set a base line to follow to see how quickly I am declining? How was I to know that I needed physical therapy and I needed to stay out of the heat completely? We discussed none of this.

I had been on the Copaxone for about two months when I began to stumble and fall. I made a trip to Indiana to see Mother and Kendall and fell my first night there. When I came home, I went and saw my neurologist and I told him my concerns about falling and stumbling. He shrugged his shoulders, never looked up from his little computer and said “You have MS.”. End of conversation. Ok…..

The next week I left with Mother and Belle to go to Hilton Head to see my brother. I laid on the beach for ten days. I swam in the ocean, went shopping, ate good food, visited with my family. I had a wonderful time. I felt cleansed by the strong ocean waves and the hot sand. I got a short haircut, an excellent tan and came home feeling refreshed and renewed. Two days after I got home, I couldn’t move my legs at all.

Ken, Belle and I went to the grocery store. They were walking behind me and Belle noticed my legs buckling. She asked what was wrong and I told her I thought I was just tired. We got home and when I stepped out of the truck, I fell to the ground. I got back up by myself and got into the house. Ken told me to sit on the couch and just rest a minute. I sat there about five minutes and I had to pee. I got up to go to the bathroom and I couldn’t stand. I lost the use of my legs in about a twenty-minute time span.

I was admitted to the hospital and put on high dose steroids. I went in on a Friday and on Sunday, Ken came into work and he asked me if I had seen a neurologist yet and I told him no, so far I had only seen the hospitalist. Ken started throwing a fit and before the evening was over, Dr Long came into see me. But…Only to show a stack of papers to me he had in his hand explaining that he had eight new consults in the hospital and he didn’t have time to see me. Holy crap. Ken was livid. He started a ball rolling that eventually went to the Hospital Administrator. After Dr Long figured out that I was Ken’s wife, he apologized to Ken. He said if he would have known I was Ken’s wife, he would have seen me and not reacted that way. Ken told him no patient should be treated like that. I am now in the process of finding a new neurologist.

After spending a week in the hospital, I had to go to rehab. That was honestly one of the hardest things I’ve even done. I had been gone to South Carolina for ten days, home two days, in the hospital for eight days and now they were talking about rehab for three weeks. I threw a big ol’ fit. I missed my kids, I missed my dogs, I missed my house. I didn’t want to do that!! Everyone tiptoed around me like I was a petulant child not getting her way and bombarded me into going.

I went in an ambulance and Ken followed. As soon as I was settled in my room,.he left to take things home and bring other things back. When he left, one of the therapists came in and told me that I had to take a shower. I told her I had just taken one at the hospital. No matter, I had to take one now. In front of her. I had to get myself undressed, bathe, dry off and get dressed again in front of her. I was furious. I was embarrassed. I was humiliated. I suddenly knew what it felt like to no longer be in control at all. After that ordeal was complete, I got my schedule for the next day. Finally everyone was gone and I just laid there and prayed. I prayed simply to get better so I could go home.

At about four o’clock the next morning, I was abruptly awakened when three aids came bustling into the room, flipping the light on and snatching the curtain back on my roommates side of the room. Did I forget to tell you I had a roommate? I did. I was in the bed by the door, I had a curtain all the way around my bed and a cunning little television on an arm that I could position any way I liked it. I was in a little tent. That’s all there was too it. It was HOT!!! And now the entire room smelled horrible!! The lady next to me was sick and she had diarrhea. I was HOT and sick at my stomach from the smell and still horrified that I had to bathe in front of someone and I wanted my DOGS! I sent Ken a text. I told him to come and get me RIGHT NOW!! I WAS NOT DOING THIS!!! Then I texted Kennedy, then Kade. Someone needed to come and get me. This wasn’t a prison, or Russia. I didn’t have to stay here!!

Needless to say, everyone came. I didn’t get to leave. They very reasonably reasoned with me. The doctor reasoned with me. Everyone Poo Poo’d me until I was so damn mad I just sat there and steamed.

The best thing I ever did was stay. The doctor there was wonderful. He did all of the baseline tests to see where I was. I found out I have a left side deficit. My left foot drops (why I stumbled) and I found out that the left side of my tongue doesn’t work properly. I have muscle weakness there so I don’t swallow well. I learned how to compensate for both of those things. I learned that my pupils don’t respond correctly. They don’t dilate as they should. I am supposed to be in lightened areas as much as I can to force them to dilate somewhat. I learned that the heat will do so much harm. Those ten days on the beach? They weren’t soothing me, they were cooking me. Heat is the enemy. I am not even to keep the house too warm or to wrap up in a blanket and get my body too hot. I have a frog tog to help with that and I used a cool cloth a lot. I prayed for God to heal me so I could go home. Nope. I got to stay and I learned more than I had about my body in the entire previous year. Oh, and the sweetest little nurse found a fan for me. Than improved my attitude greatly.

I did it again, though. I over did it and over heated this Memorial Day and ended up back in the hospital. I have new lesions. I have formed several new lesions since I have been on the Copaxone so it isn’t working. It is a very low strength medicine and I need something stronger.  My MS seems to be more aggressive than I thought. I have an appointment on August 24th with an MS specialist in Little Rock. I found an MS clinic in the Boston area that I am planning on going to. They have the most up to date information and treatment in the US. I have filed for disability.I now have optic neuritis in both eyes and my vision is very poor. When I am approved for disability, I plan on going to Boston. It will be an expensive trip.

Until then, I go out on the lake when it is cool. I love on my dogs. I enjoy my children and grandchildren. I am trying not to be discouraged. That seems to be really hard for me. I am thankful every day for my family and friends. I am also mad every day because I feel like crap. I am working on it. Thank God for his grace.

Music and Mourning

No matter how old I get, I still remember things so clearly. I forget what I had for lunch yesterday, but I remember going to Gene’s with Amy and Kim like it was yesterday. I can begin thinking about someone or something I did, and I am transported back to any moment. Sometimes it is something horrible and I have to drag myself back to now. Sometimes it is the sweetest memory and I hate to leave it. I can be transported by a song. Music is something I have to be careful with. I can hear a snippet of a song and find myself thinking of a slow dance in high school, couples skates at the Roll-Arena, drinking Malt Duck on Gunbarn Road. Michael Jackson and Prince always remind me of Amy and Autumn. Riding around listening to songs and knowing every word, every nuance of the song. I watched Places In The Heart the other day and the song In The Garden was playing. That song has a melancholy effect on me. It reminds me of being at church at Lindberg Road when I was young. Those hymns didn’t mean much to me then. Now they make me reflect on what the words really mean. They also lead me down the path of young girls in youth group talking about boys and plans for church camp.

I also have songs that make me happy/sad. Anything by Santana makes me think of my dad. He loved Carlos Santana and listened to him all the time. He loved America and Blue Oyster Cult. I will catch a song on the radio once in a while, and it makes me smile. I always sing along. I love those old songs now. However, they always create a longing for him. I also have songs that make me mad, sad, sick, bitter. Music has a momentous impact on my emotions. I can be just skipping along in life, not really thinking about anything, and a song will come on the radio. It has the ability to make me instantly angry. In the same manner, I can be feeling down and Kennedy or Belle will play music for me and I am instantly uplifted. I don’t know if everyone is like this. My children are, but is that because of me? Kyler listens to country music from the 80’s and 90’s. It makes him think of when he was small and he loves the nostalgia of it. It makes me want to wreck my car into a tree. See? Same music, same family, two polar opposit reactions.

I am careful now, when I am going through something emotional to limit what I listen to. I know it will stick with me. I can ruin a perfectly wonderful song simply by listening to it at the wrong time. Maybe I’m crazy? Don’t tell anyone.

My Amy sent a text to me yesterday, telling me that an old friend of mine had died. I met Chris at church, after his father’s funeral. His Grandparents went to Lindberg Road with me. I saw him sitting across the row from me and I went after him with all the Tracey Haines-ness that I had. His grandparents were thrilled, my Mother was not. Chris lived with his Mom, step-dad and his little brother. I became friends with all of them. Chris and I would go together and break-up, then get back together and break-up. This went on for years. The last time I saw Chris, I had just had Kade. I was walking through the foyer at church, carrying Kade back to the nursery to feed him and I ran right smack into Chris. I had been sweet talking to Kade because he was fussy, I had my head down and ran right smack into him. Chris’s girls had visited church several times with his grandmother, but I had never seen him. I looked up and he said ‘Hi Tracey’. I was glad to see him. We stood and talked for a minute. Catching up on kids and life and families. I excused myself when Kade began to get fussy again and that’s the last time I ever saw him.

Chris’s grandparents and I still saw each other at church every Sunday. Ellen loved my babies. She always said I had the prettiest babies she had ever seen. Periodically she would catch me up on what Chris was doing and she would talk about his girls. I felt like I knew them through her. She was very proud of all of them. His grandpa, Warren, always had a smile for me. He had a stroke and it was difficult for him to talk, but we always exchanged hugs. Ellen and Warren have long since passed. I attended both of their visitations but I never saw Christopher. I lost touch with his Mother and with Chris entirely.

Then yesterday I got news of his death. It has made me so sad. I haven’t seen Chris in 23 years. I have no idea where his life took him. I don’t know if he was a grandpa. I don’t know who will be standing around his casket mourning for him. I don’t know if he was a happy man or not. It’s so surreal how you lose someone in your life. The space gets bigger and bigger between you and them until you can’t see them any more. I still consider Chris my friend. I will miss him even though I haven’t seen him for nearly half of my life. Once I connect you to my heart, I can’t un-connect.

After Amy’s message, I thought about the crazy times I had with Chris. I thought of songs. I have two that connect me to Chris. Two songs that no matter where or when I am, I immediately think of him. One was Open Arms by Journey and the other was Goodbye to Romance by Ozzy Osbourne. Odd, I know. But there is a story here.

On my 18th birthday, I was going through a very rebellious period in my life. If my Mom said grass was green, I told her it wasn’t. I was very difficult at that time and I have spent a good deal of time trying to make it up to my Mom. You never forget being awful to your Mother. Anyway, I spent my 18th birthday at Christopher’s house. Toni, his mom, invited me. Chris had a new girlfriend and I was so jealous. Now remember, I just showed up at their house and Toni invited me to stay. Chris was NOT happy. I didn’t care. I decided to wreak as much havoc for him as I could. Teach him to get a new girlfriend on my birthday…

Toni invited a crowd and a crowd showed up. She bought me a little pink cake with pink icing and pink roses. I loved pink back then. She also bought a lot of beer. I didn’t drink much but I gave it a go that night. I remember very little of that evening except seeing Chris’s new girlie sitting on his lap and me storming upstairs to his room.

Chris had an old reel ro reel stereo. So you had to push a little button and the reels would spin and take you to the song you wanted. When you pushed that button, there was a little ‘reeeepppp’ sound that was a ‘fingernails on the chalkboard’ sound. I went upstairs, put Ozzy on and listened to Goodbye to Romance. Over and over and over and over and over and over…..lots of overs. I had it blaring, the volume up as loud as I could get it. Chris had these humongous speakers, almost as tall as I was. The house was shaking with Ozzy crying over saying goodbye to romance. After about an hour of this, I went tripping downstairs to go to the bathroom. I remember someone asking me how many times I was going to play that flipping song and me screaming in his face, as many  flippin times as I wanted to. Not my finest moment. Keep in mind how stupid some 18 year olds are…

I woke up the next morning and as quietly as I could, gathered my things to get the heck out of Dodge. Although I couldn’t remember exactly what had happened, I knew I had made a fool out of myself. I put my coat and shoes on and started looking for my keys. I couldn’t find them anywhere. Maybe I had left them in the car? So I went outside to see. This is in January. In Indiana. It was FREEZING and there was two feet of snow on the ground. I looked up and down the street for my little blue Camaro. It wasn’t there! I looked around the corner, thinking maybe someone had to move it for the snow plow. Not there! Oh my goodness! Someone had stolen my car!!! I ran back in the house, dropping all of my things along the way, stopping to pick them up, now covered in snow. I opened the door to the house, hurried inside and ran right into Chris coming out of the kitchen.

I yelled that someone had stolen my car!! He laughed, “No, your mom came and got it.” Freezing in place, “My mom?? How did she get here? Where was I? Why did she take the car? Did she know I was drunk? Holy crap! What is going ON??????” So Christopher explained to me that while I was upstairs, singing Ozzy at the top of my lungs, refusing to either turn it down or change the song, my mother came to the house. Christopher came upstairs and told me my mom was downstairs and wanted me down there now! I told Chris to tell her I was “having an attitude adjustment’ and refused to come down stairs. Apparently the entire party got a huge kick out of this. Mother did not. She asked for my car keys, they were readily available on the coffee table and Chris handed them over.

I didn’t even know how to react. If you know my Mother at all, you know this didn’t go well. I eventually broke down and called her. She came and got me. We rode home in stony silence and I got grounded from life for a long while. I always tell my children, ’18’ means nothing. I knew. I proved it to myself in January of 1985.

These two songs used to make me nostalgic. I would sing the songs, my kids know the songs and they know my stories. I use my youthful stupidity to hopefully let my children know how NOT to act. Did it work? I hope so, but you’ll have to ask them. I won’t be able to listen to those songs anymore. They will remind me of a friend who isn’t here anymore. Someone I won’t ever run into at home at Pizza King. Someone I won’t ever get to show pictures of Karter to. Someone I won’t ever get to ask if he has grandchildren and if he likes being a grandpa.

People in life come and go. Friends, lovers, even family. Life moves forward and a lot of the time, people don’t move with you. For this reason, I like Facebook. I have re-connected with people I never thought I would hear from again. I get tired of people asking me to share this photo and Jesus will bless me or share this photo if you hate child abuse and the picture of a bruised baby. I just scroll by. Sometimes I un-follow. For the most part, I appreciate the ability to see how you’re doing in a fairly simple manner. I don’t get to do that with everyone. I will mourn for Chris and his family. I hope he had a good life. I hate I never got to tell him about mine. I pray  he rests in peace. I’m going to go now, get on FB and talk to some old friends, maybe listen to something that will make me think of playing Barbies with Tammy Dodge at her house. Maybe Bobby Vinton. I hope I see you soon.

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