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.

First, my heart pooped out a little

Seven years ago, I had so many things going on in my life. I worked at City Hall as the Assistant to the Mayor. I volunteered at our food panty and worked for Jan Paschal at the Every Child Is Ours organization. I was responsible for a job program we utilized at City Hall, managing a group of teens and a group of senior citizens under a job stimulus grant. I was responsible for two festivals in our town, Hometown Days and our Fall Festival. I was the Vice President of our Chamber of Commerce. I put together fundraisers and pancake breakfasts for our Student of the Month award at our high school. I was in charge of decorating the town for Christmas. I wrote grants for the city. I was the President of the North Jackson County Democratic Women. I was on the Library Board and I was on the Jackson County Literacy Council Board. And I organized the Christmas Parade each year, my favorite. Throw in four school age children and two dogs. I was busy, to say the least. I loved it. I was going all the time. My children volunteered right along with me. That is all behind me now. Today my goal is to hem my curtains. I may or may not get this done. It’s been a goal for about a month. Feeling useless is a daily battle now.

Five years ago is when I first started not feeling well. I was tired all the time and I had absolutely no energy. I drank those incredibly healthy energy drinks (wink wink) by the handful every day. Which made me feel even worse. I would wake up in the early mornings having chest pains and feeling short of breath. I was going through my divorce at the time and I was so busy. I just chalked it up to being stretched too thin.

I eventually went to see my family doctor. He put me in the hospital and started running tests. Everything concerning my heart came back clear. On the day I was going to be released, I woke up early and began having terrible chest pains. They started doing blood work up again and they ran an EKG. Again, everything was normal. Our hospital was so small that we didn’t have a full-time cardiologist. Dt. Ashwood came to Newport every thursday, and it was thursday. My family doctor, Dr. Green, asked Dr. Ashwood to consult and after a brief description of my symptoms, he called for an ambulance to take me to Sherwood, a small town outside of Little Rock, where he planned to do a heart catheterization. I was diagnosed with Coronary Artery Spasms. He knew what was wrong just by the symptoms I was exhibiting. This disease is also known as Prinzmetal Angina. The key symptom here is that it only happens at rest. It is not brought on my exertion. I was put on a nitrate medication and sent home.

This condition is extremely rare. When the coronary artery spasms, it causes all kinds of trouble. Unfortunately, this trouble doesn’t show up on any of the standard heart tests. This has been a problem for so many that have this disease. It is regularly misdiagnosed. I have had to learn to become a tenacious health advocate for myself.

My biggest problem has been, most doctors do not know how to treat this. I was lucky enough to find a cardiologist that was very knowledgeable about this. When Ken and I got married, his insurance required me to go to NEA Baptist, as this is where he works. I had to change family doctors and find a new cardiologist. Fortunately, I found a wonderful family doctor here and he stays on top of this. Because the doctors in the ED usually have no clue about this disease, my doctor will direct admit me and I go straight to a room and he writes the orders. Ironically enough, all of the hospitalists are very aware of what course to run with this and I have received excellent care from all of them. I fired my cardiologist, or rather, Ken did.  I will admit I think he is a great heart doctor usually, everyone loves him. He is also an egotistical ass. Because he can’t see anything on an EKG, I have nothing wrong with me. Period.

As I have aged, there has been a steady progression of this condition. I now wear a nitroglycerine patch all the time. I also keep sublingual nitro with me at all times. Well, I am supposed to. Much to my family’s consternation, I forget it a lot. The spasms come in clusters. I may go months without having any sort of chest pain at all, then it starts again. I usually end up in the hospital for six or seven days with a nitro drip and morphine. The combination of those two things usually pull me out of the cluster. This is exhausting. And scary. Although a heart attack is possible, the real feat is that the spasm will throw me into a deadly arrhythmia. When the artery spasms, it cuts off blood and oxygen to my heart. As this has progressed, the spasms have steadily gotten worse. When I have them now, I can feel my heart beating differently. I am always hollaring for Ken to get his stethoscope. He is always calm and cool. This is why God sent him to me, I’m sure.

If you have been friends with me on Facebook over the years, this is what is happening when I am in the hospital for my heart. After I come home, it usually takes at least a week to begin to feel human again. This takes a huge toll on my body. This has also led to vaso-spasms in my brain. At least that was the thought until I got my MS diagnoses. I have had a few TIAs although they aren’t sure which disease to attribute it to. I was in the hospital for this in March of this year. It’s now August. I’m hoping I don’t have any more clusters this year.

This is scary for my family. It’s overwhelming for them. Being in the hospital for a week and then recuperating for a week puts a burden on my family. They never complain. They bring me treats and toys to entertain me. Everyone pitches in to make sure everything moves along smoothly.

There is practically no research being done for this disease. I read everything I can get my hands on. When I talk to my doctors about this, I am usually the one who has found something new. I belong to a site called heartsisters.org. There are so many scary stories on there. Here is the link if you’d like to look at it.

https://myheartsisters.org/?s=coronary+artery+spasms&submit=Search

I am thankful for all of the prayers from my friends and family. When ever I ask for prayers, the response is overwhelming. I have made it this far, with my sanity in tact, because God has answered all of those precious prayers. Thank you.

 

The first wink wins

Entering the dating scene after twenty-five years of marriage was sort of like going for a swim in the ocean ten minutes after watching Jaws. You know there are sharks in the water, but surely you can find a small space of water that is safe. After a short relationship and several dates, it’s more like, you’ve lost a leg, but giving up now would just be silly. Everyone said it was scary out there, but I kept thinking, it can’t be THAT bad. Holy crap.

After my divorce, I immediately got into a serious relationship. That’s not what this blog is about, it deserves it’s very own story. Needless to say, it didn’t work out. I was genuinely heartbroken. He was a man in the little town we lived in. I knew there wasn’t any other viable option for a date in our small town and I was trying to put a band-aid on my rejection. After some prodding from a good friend, I decided to join Match.com. This journey culminated in a marriage that is a gift from God. The adventure to get there is too bazaar not to share. And it’s all true. I couldn’t make this up.

Let me start by saying that Ken was the first man to ‘wink’ at me on Match. When you are interested in someone on this site, you send them a ‘wink’, an emoji doing just that. This is sort of the equivalent of the note you passed in 5th grade…

Do you like me?

Yes       No

Circle one

I received several winks. I got one from this handsome man in an orange shirt, standing up straight with his arms crossed and grinning. I read his bio and he talked a lot about riding his bike. I noticed he had this really cool watch on with all the bells and whistles. Your picture and bio are meant to portray as much about you as possible in as little space as possible. What Ken’s information said to me was that he was a health nut. His watch had a little stop watch on it. He was out riding his bike come rain, shine, snow or sleet. Nope. The last thing I wanted was to have Lance Armstrong riding along behind me noticing how big my butt was and feeling sorry for the bicycle seat on which I was sitting. Time to move on.

The first date I went on was with a man who actually lived in the next town over. He worked at the Steel Mill. I have a really good friend who also works at the Steel Mill, so I called him and ask him about ‘Rob’. He assured me he was a good guy with a good job. Rob’s children lived with him and he was all about family. Ok! This sounds promising. I winked back at Rob to get the ball rolling. We made a date and I anxiously awaited, feeling really good about this.

So, on Friday night I was ready and waiting on my date. We hadn’t made any definite plans, we were just going to play it by ear. Kennedy was home and we came up with a plan. If I wasn’t having a good time, I would send her a blank text and she would call with an emergency. That would have been awesome, except my phone died about fifteen minutes into the date. About fourteen minutes after I sent Kennedy my SOS.

This man was full of himself. He was also stuck in 1979. Dark blue wrangler jeans, shiny red button down (think black button down in Saturday Night Fever only blood red), pointed toe black cowboy boots, pinky rings (both pinkies), enough gold chains to melt down and make a gold-plated disco ball. The most attractive part? His bald head. Like Kojak bald. It was obvious by the spots he missed around his right ear and neck, that this was something he did to himself. Our conversation? How much money he made. How much is Harley cost, How much his Camaro cost. How much his house cost. How much his daughter’s prom dress cost ($89.00…?). I didn’t say thirteen words all night. Eleven of those words were, “I have to work tomorrow, I’ve really got to get home.” I delivered said words at 8:15. I finally got him to take me home around 9:30. When I got home, the kids and some of their friends were there. I told him not to walk me to the door, I was so embarrassed. I walked in the house, said hello to the group of kids in my living room, went to my bedroom, laid down on my bed and bawled. Kennedy came in and talked to me. She made me feel better, as usual, and I quit feeling sorry for myself.  It was only one date. I didn’t ever have to see him again and the next date would be better.

No. The next one wasn’t better and I couldn’t get Rob to leave me alone. He called constantly. I just declined the calls. So he texted. With the ferocity of a fourteen year old love-sick boy. He missed  me. After one date? He really thought this was a good ‘love connection’. Holy crap. We had talked about my previous relationship and the heartbreaker’s best friend also worked at the Steel Mill. Rob actually sent a text to me telling me that he had talked to the best friend and the heartbreaker and I were never getting back together, so if that’s what I was waiting on, I could forget it. OMG. Then he quit being nice?, I guess nice is a good word. He began to get vulgar. After one particularly horrible text, I sat down at the kitchen table and cried. Kennedy came home and found me like this.  I showed her the text. She FLIPPED out. She decided she was going to take care of this. She sent him a text telling Rob that messing with a Soden was a mistake. If he didn’t believe her, he should ask around. She told him that if he sent me one more text, she was going to have someone break his thumbs. Thumbs, Kennedy? Of course, those are what you text with. Funny? Yes. Scary? Also yes. He left me alone. My sixteen year old daughter scared him. If only I’d known!

The next few dates were awful. I went out with a man who had recently finished his treatment for cancer. He was very health conscious and spent most of the time we were out talking about ‘getting healthy’. I admire that. I think living a healthy lifestyle is commendable. However, when I ordered a pop to drink with our pizza, I got a lecture. He asked if I meant to order water. Maybe I was just so nervous that I needed a pop to calm me down. After berating me until I ordered a water, he ordered a beer. Seriously? I’ve got work in the morning. I’m going to need to go home early.

Then….there was the guy who Kade scared. Kade and Zach were dressed up for a stunt they were filming. This was nothing new to me. I was used to their insanity. They came busting through the front door, dressed in Daisy Duke shorts, cowboy boots and a cowboy hat. They were dying to tell me about their latest exploit. They had talked the new policeman in town into letting them get on top of the police car, in their present get-ups, and dance on the top of the car. Pictures and video were taken. As I started this post, I went looking for the evidence on various Facebook pages but I couldn’t find it. My date sat there, eyes wide and clearly uncomfortable. He left shortly after. He made up some lamo excuse. Look, these kids are nuts, but they are my nuts. Seeya.

Then….the big burley guy who worked for the railroad. We spent a lot of time texting and calling before I agreed to go out with him. He was recently divorced and was as out of the dating loop as I was. He was actually pretty promising. Until we had the date. He talked incessantly about his ex-wife. She had helped him pick out the outfit he had on for our date. They had gone out for dinner and shopping together the night before. They belonged to a supper club that they still attended together. Ok, yes, this was peculiar. Maybe I was just being to touchy. Then the clencher. He asked me if I liked pedicures. Well sure! I think every woman likes to be pampered. What a way to relax! He exclaimed ‘I do too!’ Ok. I know guys do this, telling myself to quit being so judgemental! Then he flipped his shoe off and held his Fred Flinstone foot up for me to see his…zebra striped toenails. I swear on my blond hair, I snorted my drink out my nose. I didn’t know whether to laugh or cry. Neither would be appropriate but at this point, did I even care? He told me how he loved to have his toenails done and then wear flipflops to show them off. He got on Pinterest and pinned different ideas because he liked to get something different each time. ‘I’m sorry. I have to work early tomorrow. I really should be going.’

I QUIT!! I will be single the rest of my life. No amount of encouragement from family and friends was EVER going to get me to go on another date. I knew this was going to be hard but holy cow!

During all of this dating hell, I had been texting back and forth with Ken some. We had exchanged numbers but I didn’t see this going anywhere. Another health nut. I like POP!! My Mother came for a visit and I was having a pity party about the dating insanity and how I was going to be alone forever. During her stay, Ken and I talked a lot. She wondered who I was on the phone with all the time. I told her some guy who rode a bicycle! Like I was going to go out with someone who rode a bike everywhere. That wasn’t ever going to work. She talked to me like Mothers do. I can’t give up…There is someone out there for me….God has a great blessing in store for me…blah blah blah

So I went out with Ken. I was so leery. I was totally prepared for nipple piercings or for him to ask to borrow my panties. You name it, I thought about it. He picked me up and we went out for pizza (Our restaurant situation is horribly lacking in Jackson County). I knew before the pizza got to the table that if it were up to me, this wouldn’t be our last date. In short order, he met my family, I met his and we were hooked.

Ken was a slow-cooker prayer. I had to go through all the other ‘dates’, to use the word loosely, to be able to appreciate him the way he deserved. I had to learn. I had to take all of the pop-quizzes so I could pass the final test. Ken is funny. He makes me laugh every day. He is kind to my children. He is empathetic and sympathetic. He is always cheering me on, no matter what hair-brained idea I come up with. He goes through the medical craziness and supports me fully. He loves me. He not only tells me, he shows me. He will do anything he can to make me happy. And the man let me have seven dogs. That in itself speaks volumes about his drive to make a happy woman out of me. When I got diagnosed with Multiple Sclerosis, we had only been together about three years. I told him that I wouldn’t blame him if he didn’t want to do this. This isn’t the life he signed on for. I felt like I was saddling him with something that would limit every part of his life. He wanted someone to actively spend the rest of his life with, not someone who will likely end up in a wheelchair. He got so mad. He has repeatedly told me these last two years, that we are in this together. He even found a wheel chair for me that is sort of like an all terrain vehicle. It looks like something out of Star Wars. I know that with all the uncertainty of this disease, Ken will be by my side to help me live the fullest life I can.

All those horrid dates were totally worth it. And there is no way this man will ever come home with zebra striped toenails. Oh, and the bicycle thing? It was a Harly Davidson Motorcycle. No bicycling for him. He isn’t a health nut! He tells everyone that if you see him running, you should run too, because something bad is coming. He does try to get me to eat healthier. That’s because he loves me and he knows the benefits would be huge. Then he will eat an oreo with me. I win.

 

Grandboys

I kept the two oldest grandboys this week. They are eleven and thirteen. I forgot how young men acted. I raised three boys but I haven’t had them at home in three years. I have girls home now. Although Kennedy lives on campus, she is here all the time and of course I have Belle. The only thing I got right this weekend was the food. I bought a ridiculous amount of food, snacks, orange pop, candy and chips. I totally nailed the food thing. Everything else, well, you’d just have to ask them….

Belle takes at least three showers a day. Throw in a long hot bath, hair time and makeup time and she is in the bathroom every twenty-two out of twenty=four hours. When all the girlies come and stay, I always buy the newest Bath and Body or Philosophy. I have bubble bath and a bath bomb or two. I always buy a new candle for the bathroom and I ALWAYS have new socks. My girls all love new socks. Especially holiday socks. I buy flavored coffee and green tea. As I’ve been writing this, I think I always do the above things for my now grown boys. They like the spoiling I do for the girls and are more than happy to partake. They usually get new pajama shorts instead of socks, but pretty much everything else is the same. Any time they stay, I always try to make it an event. That’s why everyone wants to stay at Birdie’s house.

This week I had a new teen and pre-teen boy. This is the first time I have ever kept them like this. They usually come with Ginnie and they all stay. Um…she wants the spoiling too! Of course she stays! This weekend, however, it was just me, the boys and Belle. I am ashamed that I was a bit lost as to what to do with them.

We have all the toys that watching the television has to offer. Netflix, Hulu, Amazon, On Demand, every channel we are offered. The girls and I don’t watch ‘real’ TV. We watch older shows that are offered or movies. We are movie hounds. We like movie series. There is nothing better than spending a day watching Harry Potter, piled up on the couch with all of the dogs with a veggie or fruit platter! And ice cream. Always ice cream. Ken watches the History Channel or Nat Geo. I love Nat Ge but I totally know more about Hitler than I could ever want to know.

They boys arrived on Thursday and I asked them what they wanted to watch. Let me pause here for a moment and clarify something. I am an outdoor person. We live on a lake. Any other time we would have taken the boys out on the boat and fishing and turtle hunting and all that good stuff. But it’s HOT here. Like, dangerous hot. I can’t do hot anymore. When I do, I have a flair or relapse and end up in the hospital. No heat and humidity for me. Ok, anyway, I asked the boys what they wanted to watch and we agreed on all of the Back To The Futures. I was thrilled! I love those movies! That was where the group television activities started and stopped. Sports, stupid humor movies, SCIENCE shows! I hate science shows! Belle retreated to her bedroom to bask in all of the Gilmore Girls glory and I was stuck in here with adolescent boy humor.

Also, boys fart. A lot. Now I know this. They keep farting when they grow up. Ken and my boys can rattle the windows. They don’t, however, fart on the dogs. Or try to decide what the dogs have been eating based on their farts. Or time their farts on the stopwatch on my iPhone. Farting was a big part of this week. I forgot that. I’ve burned every candle in the house. Last night, in an act of total desperation, I sprayed raid in the house. Sure, it burns your eyes, but not like the fart smell does.

There seems to be a breakdown in communication between the boys and I about cleanliness. I know they brought clothing with them. They each brought a duffle bag. I know one of the bags contained a game system, but I am assuming there are clothes in the somewhere. I have repeatedly laid out towels and welcomed them to take a shower. The only time they have been wet this week is when they went swimming. Maybe they are playing ‘outdoor camping game’ and took some soap with them to the dock. I didn’t smell soap. Not that I necessarily smell body order either. I’m not all that comfortable asking them if they have washed themselves so I’m going to let their mom figure it out when they get home. They are in one piece, they have no broken bones and we haven’t had to have stitches. I’m going to consider this a success.

We have seven dogs. Old, young, big, little and really little. I have asked them to stay out of Willie’s face, you’re going to get bit. I have asked them to be careful and not toss the mini doxies around, they will scare or hurt them. I have warned them about wrestling with Sam and Tag, I’m afraid the boys will get hurt. I suddenly stopped last night and realized that the dogs were having a ball and so were the boys. They like to get all of the dogs howling and they howl with them. I was never this paranoid with my own children. When it’s your grandchildren, you will have to explain the wounds and missing teeth and the hunk of hair that is gone from the side of their head. It’s much more stressful!

I raised three boys. They were ornery boys who kept me on high alert most of the time. I miss having them here all the time. The two that live in Arkansas come up every Sunday. That’s our family day at the house. I used to cook every Sunday but it’s hard for me to do that these days so Kade has taken over Sunday dinner. I love it when they are here. I’m glad they have grown up. Well, for the most part. I miss the stunts that make you want to cover your eyes. I miss the epic shaving cream battles and the Light Saber wars. I miss the Skateboard tricks and the bicycle tricks and I dont’ miss the 4-wheeler tricks. I can live three lifetimes without ever seeing any more of those. My favorite times now are when everyone gets together. I hope these boys will grow up and still want to come to our house and hang out. I hope they grow up and want me to fix them their favorite foods and they still want to come over and watch Back To The Future. Won’t it be great when they bring their girlfriends, then their wives and families and come up with all the other kids. I will always keep silly string and remote control cars. Little boys grow into big boys that still like to play.