Turning on a dime….

Myasthenia Gravis is a tricky disease no doubt about it. I was not feeling well Friday just simply worn down. Saturday morning I woke up after a good rest and still felt worn down. I had two picnics – one for work and one for church – to attend and supper for my son in law’s birthday. (I try to cook a home cooked meal for my family on their birthday). I had to make hard decisions that I was staying in bed most of the day and not doing much of anything. Jaron’s home cooked meal came “home cooked” from The Chicken House in town and the sides were made by Kathryn & myself.   I should include that the house was cleaned by Adam. Afterwards, I immediately went back to bed.  My weakness is hard to describe; it’s like carrying a weighted object around on my shoulders and it feels like I have been doing it days on end. Friday it weighed about 15 pounds, Saturday was about 20 but when I woke up at 5 AM on Sunday it was about 100 pounds and I couldn’t breathe or hold my head up. It scared me, I will not lie!  The human in me got upset but my spirit said “Cry out to Jesus” and that’s what I did along with taking my medicine three hours early. I also went on Facebook to ask for prayers. Tal came to check on me and I was visibly upset which made him in panic mode but, I told him to give me some time. After praying for 20 minutes my spirit said “Rest in Him” and I did. I literally slept for 3 hours and could feel my breaths getting deeper and stronger and I slept. Nothing short of miraculous. So if you prayed for me thank you for my miracle. 

I slept off and on all day on Sunday. I can’t tell you if the sun was shining or if it was cloudy.My  eyes were closed probably 18 hours of the last 24. Thank you for the calls, messages, texts but most of all for crying out to Jesus on my behalf. This morning I woke to a renewed strength and I am getting dressed to go to work. My mom is driving me because I don’t know how long it will last. Good thing is, I work at a hospital with a bunch of nurses and co-workers who will have my door revolving like Grand Central Station checking in on me. My work family is awesome! 

To God be ALL the glory!! Thank you again for your love and support! -Melynda

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I Call It Progress…

June is Myasthenia Gravis Awareness Month and while most people have never heard of it I live it every second of every minute of every day! I know that sounds monotonous but there is not a second in the day that I am not effected. I try to keep things from most people by saying “I’m ok” because what does it help or do for me to complain? I. Am. Sick…and there “ain’t no” changing that fact! Myasthenia Gravis is a rare auto immune disease. It is caused by the person’s immune system basically going haywire and attacking the receptors that transmit messages from the nerve to the muscle. People can be effected differently. Most of my weakness occurs between my eyebrows and mid chest. Think about everything between your eyebrows and mid chest that use voluntary muscles. Your eyes, your mouth, your neck, your arms, your throat and your diaphragm. Now blink let’s say 30 times and look in the mirror. Do your eyes look the same? Mine don’t! Now think about turning your head right to left – back & forth about 30 times. If I do that I can’t hold my head up. I can’t lift things like I want, I can’t swing a golf club like I want. Sometimes I can’t eat what I want, (I know you would think I would be skinny but that’s the prednisone I take daily) and sometimes when it’s bad I cannot take a breath deep enough to suck in air. That’s when I have to go to the hospital and that is what I hate the most – being away from my family! 

Now that I’ve explained some of it; my progress I’m speaking of is my treatment. Because no two people are alike, no two immune systems are alike. So each person has different treatment that works for them. Finding the right treatment for the right person is like finding a needle in a haystack – made with the big round bale of hay! Currently I take 17 pills a day to keep my body moving and fighting. One of these drugs is a form of chemo that is working to kill my immune system – that’s why I wear a mask. I can’t fight off a cold and heaven help I get a scrape or cut it takes forever to heal! One of the medicine is Prednisone that helps with inflammation and cause what they call a “moon face” – I have got a great round face behind the mask! 😷😉 I also take a medicine called Mestinon specifically made to make those receptors transmit the message to the muscle and I have a Fitbit with alarms set to go off because I take this medicine every 3 hours. If I am late or miss it I simply cannot function. Guess what – I hate taking medicine! How’s that for karma? 😂😂 Then there are several supplements and medicines to help with anxiety because lets face it; when you are out in public and you get to where you can walk or talk or breathe – YOU GET ANXIOUS! And now on to the final step of my treatment is called IVIG or intravenous gammaglobulin which is a blood product. This is what I get when I’m hospitalized but last Saturday I was able to get it at home! Exciting stuff! I worked everyday this week and was able to come home, cook supper and clean my kitchen! That might not seem like much but it is a HUGE step for me! It fighting to gain some normalcy back. It’s telling this disease “you don’t have a hold on me”! It’s making me feel somewhat human again. Most people with MG hide out at home because we never know what to expect when we go out. We can go from 60 to complete stop in a matter of minutes and it stinks! ​

Please understand that I know God has a plan and it’s perfect! I might have hit a rough patch in life but in 1 Peter 1:7 the Bible tells us of our faith going through a refiner’s fire. The metal goes in a hot fire and comes out more pure with each pass through the fire. God is just making me stronger and purer so that one day I will be face to face worshipping Him and I am perfectly good with that! It doesn’t matter to me what happens here on earth because I know my final destination and it’s exciting! 

Thanks for reading!

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Happy Birthday Buddy!

Today is an extraordinary day in our household. It was 17 years ago today when I was only 34 weeks pregnant Charles Adam Poss made his first appearance into this crazy world we live in. I can remember every second like it was yesterday. Most days it feels like it was just a few weeks ago! God graced us with a beautiful reddish blonde boy with the biggest blue eyes you ever did see! He also had the loudest holler of any kid I had every heard! The first four to five months were riddled with colic, multiple formulas and a big sister who tried to coax me into “sending him back” but there was and is nothing I would trade for my baby boy. I’ve always heard that boys love their mamas. Let me tell you this mama loves her boy with every fiber of her being and lately I have fought for my life for HIM! He still needs his mama and I need him! 

He has weathered this storm diagnosed as myasthenia gravis better than his Dad & I. We try to keep him from worrying, I try not to let him see me get upset or cry bu, he does. He is the first to wrap his arms around me and tell me “it’s going to be ok mama”. He even tells me that when I’m fussing at him for something he has done! He drives me to church every Sunday and anywhere else I need to go. He never complains about it even when it’s not what he really wants to do. Don’t worry, I don’t treat him like my hired help! It has perks when you treat your mama good! 😂😂

He plays golf and is good! If he practiced everyday I cannot imagine what he would be like. He would just assume to hit a golf ball in the front yard or lake as anywhere and can do some of the whackiest shots. He makes me crazy whe he says “watch this mama” and shoots a crazy hit like Adam Sandler in Happy Gilmore! He just smiles that sideways grin and I roll my eyes! 🙄 He has always been ALL BOY! He loves fishing and every other sport there is. He loves outside better than inside and prefers no shoes & just shorts as his attire summer and winter. One neighbor asked me when he was about five or six if he ever wore shoes. 😂

Adam is the sweetest, kindest, gentlest, most caring, funniest, most loving and as humble a person you will ever meet. He is just so dang quiet sometimes you never know he is in the room! He is ever listening and when you least expect it he knows all the information and has a lot of questions! He has one thing his sister lacks – common sense 😂 and that makes him dangerous- I tell him that anyway. He can do just about anything. He is my helper. We have put up new lighting in my dining room and all I did was kill the power and hand him stuff. Of course I checked to make sure it was wired right but he did most everything! 

I could go on for days about what a wonderful young man my baby had become but I won’t. Just know that when you see him – this last year had been rough on him. I hate that fact that he has had to suffer by watching everything that has happened to me. I hide A LOT of what has happened from the you but I can’t hide it at home. He has seen it ALL! There have been times while struggling for breath I’ve saved energy to say “I love you” like it’s the last time he will hear it. He totes my purse when I can’t. Just last night he had to literally pick my feet up to help me go up steps so that I could go to bed. I can’t help but get upset to think he is embarrassed by things like this especially when it’s in front of his friends. He has seen things I wish he never had to experience but he has endured a strong young man. One last thing I know about my son, he believes that Jesus Christ is real. His relationship with God is between him & God but I have tried my hardest to be an example of Christian faith. I don’t always succeed and have to ask for forgiveness which he gladly gives. For that I am thankful. I wish my whole family will be in heaven with me one day. 

Anyway -I will stop my rambling. I’m just ever so thankful for each day!

Happy Birthday Buddy! In case you can’t tell I’m a VERY proud mom of an EXCEPTIONAL young man!! I love you always and forever!!

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A Father’s Love Never Dies…

There is one thing that has brought me peace and let me know everything would be ok – climbing in my Daddy’s lap and him just holding me. The comfort in his big belly, the shaking of his jiggly legs and the warmth of his arms around me would give me peace and contentment from birth to age 45 when he died on April 10th two years ago. Before the thought pops in your head, YES! I still climbed in my Dad’s lap when I had a bad day. And now that I have been facing life’s toughest challenge, since giving birth to a colicky baby, in battling Myasthenia Gravis I miss my Daddy’s lap. I mean I still have my mom but I would squish her! 😂 

May 2, 1946 was the day my father, Charles Wyatt Fuller was brought into this world. He grew up in a home with 5 sisters, 1 brother, I know he had a cow because we have a picture of him dressed in his Sunday best hugging his pet cow! He loved animals, spoiled our dogs rotten & he loved our little family to pieces. My mom Peggy, my brother Wyatt & I were his world until…I gave birth to the first two grandchildren then he would hurt my feelings when he would bypass my puckered lips and grab the baby on my hip. If you have kids you know exactly what I’m talking about! We would butt heads a lot but when it came down to it he would do anything for us. Especially me, I was his favorite! You could ask him and he would agree! (I added that extra just for my brother’s sake!) I may not have been the best daughter in the world and may have crossed a line or two but I know that I know my daddy loved me beyond measure. With that being said, I sure miss him these days. The days I’m alone at the hospital I think of him. When I’m struggling to breathe I want to sit in his lap and know all is well. It’s why I thought on his birthday I would share something that happened a couple of hospital stays back. 

I wrote a blog in February about being in the MICU unit and having to use the sink toilet and no room for visitors several- not my favorite hospital stay! It was during that stay that I had a scary experience. I went down for a central line placement because I have horrible veins and about 15 minutes after they brought me back up I could not move, I could not talk, I was struggling for every breath and I was scared to death. I couldn’t mash the call light or for you non-southerners – press the call light.  The only thing I could do was follow the nurses with my one good eye that wasn’t cocked off to the corner. I was finally able to get one of the nurses to look at me and mouthed the words I can’t breathe. She sprung into action but again, I was in the MICU not Neuro where they know me and know what to do. If my Mama & Aunt Mary had not walked in I would have been on a ventilator no doubt. Mama told them what needed to be done and when they finally put me on the BiPap machine I just collapsed from sheer exhaustion. Imagine trying to dig yourself out of a hole someone keeps putting dirt in. That is exactly how I felt! I fought with all of my might until I knew that something was going to help me move air. It was during those hours that I was knocked out I had the best experience I have ever had. I spent time sitting in my daddy’s lap. He never spoke to me, he just held me. He had both legs, he never struggled to breathe or cough, he was completely whole as a person. He was young and handsome.  The place that we were at was as beautiful as any place I have ever seen and he just held me. I knew in that moment everything will be fine. It was one of the greatest gifts I’ve been given. 

I believe in God, Jesus Christ and the Holy Spirit. I have a relationship with God. I talk to Him so much he probably wears earplugs! He is my peace that passes all understanding. He is the reason I choose to take Myasthenia Gravis and fight like a warrior – to take this test and make it my testimony. I can choose to make each day good or bad. I can wallow in the fact I’m sick or I can say “forgettabout it” and plow through the day. I choose to be positive. I know God will heal me in His time. It may be on earth or in heaven but one day I will be healed. I am ok either way because I know it will be wonderful in heaven. I feel like I have seen a glimpse and let me tell you; it’s indescribable! I am still in awe that my Heavenly Father loves me more than my earthly father in that he sent Jesus Christ to live a perfect live in such an imperfect world. He died on a cross and rose a victor over death & sin!  We too can rise a victor by just asking Him to be our Saviour and having a relationship with Him! That my friends is THE GREATEST GIFT I’ve ever been given. I wish for you the same if you don’t know Him! A true testament that a Father’s love never dies. 

Thanks for reading. It was hard for me to share this post. I haven’t told many people about it but I felt like I needed to & then I thought how fitting – tomorrow is Daddy’s Birthday! I hope you are having a great week! ~ Melynda 

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A Magical Night…

Tonight my baby boy goes to his Junior Prom. He has worked hard on the prom committee to decorate and raise money. You see Adam is my quiet child so this turn around in his has been a wonderful fun change for me. I am getting to see this handsome, loving, caring young man show other people who he is. I’ve always called him my wall flower. He’s always there, always listening and taking everything in. Then when he was little we would get home and he could ask the most random questions about stuff people had said or done that we never paid attention to. Sometime it would be hysterical, other times we would worry what he told other people! 😳

Tonight Adam and his girlfriend Isabelle are headed out dressed up for dinner and dancing. I hope and pray it’s the time of their lives and they soak up all the fun that goes with it! I have prayed for travel mercies and smart decisions! Her parents, her sister, her brother, my Mama, Tal’s Mama, ny nephew Cash, Tal, Kathryn, Jaron and myself are all eating a big meal at the Chicken House before we get to go watch them make their grand entrance at the prom. Adam just text me, he & Isabelle went to see Big Mama, Adam’s 93 year old Great Grandmother. I’m pretty sure it made her week! I can’t wait to call her and hear all about it. For now I’m going to keep enjoying the company and this “Magical Night”.  

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Resting….

Here I sit day three in the hospital waiting on my last IVIG treatment. The funny thing is if my insurance company had cooperated I could be getting this at home or out patient but because of their lack of brilliance here I sit. The money doesn’t matter to me. It seems like I will die owing medical bills, the hospital has agreed to my payment plan and if they are fine with it I am too. For weeks I have called and spoke with the people at the pharmacy to make sure they have what they need, stress the important of this treatment and they have trudged along like I’m some number or piece of paper in a box. That exactly what they think I am. They told me last week that they were going to teach me how to give myself IVIG. For those of you that don’t know it’s a blood product number one, I would never attempt to give it to someone much less myself. Number two when I look down I cannot even see the port site and finally when they accessed my port in the hospital they used sterile technique. I wondered if I would have asked for mirrored ceilings to accomplish said task in a sterile technique if the would have paid for that? Instead (as my Mama says) I let my butt overload my mouth and asked the guy on the phone if he was a flipping idiot? Then I just hung up. I knew that it would only get worse and cause me stress. I stewed over it and call my nurse case manager with insurance. She called them and told me to call back Friday it should be set up. Ok, will do! This was Tuesday. 

On Thursday when I got out of bed I felt like I had not slept all night. I could not hold the hairdryer up long enough to dry my hair. Thank goodness I have an electric toothbrush or I couldn’t have done that.  As the day progressed at work I could not hold my head up because of weakness in my neck and shoulders.  I called my doctor who suggested I increase one of my meds and go rest. I left work went to my Aunt’s house and crashed. After over twelve hours of sleeping the next morning I was maybe 10% better than the day before. By 11am I had double vision. If you have never had double vision it is horrible. Seeing one of some things is bad enough but good grief two of everything is mind boggling! I knew what was to come next if I didn’t get this ball rolling, so I call the pharmacy and they politely said “Mrs Poss it will be at least two more weeks”  before we have final approval. Are. You. Kidding. Me?  I replied “That’s fine, I am having issues and you can foot this hospital bill. I’m pretty sure it won’t be $138,000 like the last one but it will be close. Much more expensive that HOME INFUSIONS! Thank you for absolutely nothing! Have a great weekend! ” and with that I hung up and proceeded to call my doctor. His nurse told me to go to the ER. Away I went! 

The neurologist agreed that it was time for the infusion,  let’s do it and with that I was admitted. I don’t enjoy being here. I try to keep my family’s life as normal as possible so most of the time I’m by myself but that’s ok. Whatever it takes to get well so I can get on with life.  I want to inspire, motivate & help! I want to be the nurse not, the patient; but God has other plans. And I am praising him through the hills and the valleys because He is the same God through them all! Through Myasthenia Gravis I have learned to stop, rest, enjoy, love deeper, love louder (I tell people way more often than I used to) and Praise Him through it all! We just have to rest & trust His will no matter what the circumstance. If He gives you the peace about your situation know that there are better things ahead. Know that it doesn’t matter what others think He knows and has great plans for you!  I can’t wait to see what is waiting on the other side!  Happy Sunday! ~ Melynda

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I’m A Turtle & It’s OK!

Yes, you read that right, I am a turtle in life right now. I piddle along doing what I can at a slow pace especially if it requires physical energy. It may take me two days but, I will eventually accomplish the task at hand. Before being diagnosed with Myasthenia Gravis I was a cheeta! I would zip through tasks and keep going, sometimes living off of a few hours of sleep. Well…long gone are those days! Yesterday I went to the grocery store, picked up some chicken plates at a local fundraiser, met someone I sold something to on the online yard sale, put up groceries, ate and took an hour long nap. Simply getting in and out of the car is taxing these days and it drives me crazy! Later on in the day I rode to one of our local stores to a sidewalk sale & to get a banana split with my Mama. Don’t judge! It was half of a banana split and it was my supper. It must be ok because this is what my mama says every time she drives me to get one. 😂😂😂 Once we got back home I went to bed at 6:30pm and slept ALL NIGHT LONG!! Crazy disease! The things I use to take for granted now require effort and planning. I can’t just live life on a whim. This disease has robbed me of so many things, I could make a list a mile long if I choose to but, I don’t want to. If I start making that list I expect one of you to call me out! I will be heading in the wrong direction. Friends should always help when they see someone spiraling down! I’m counting on you to help me in this fight! 

Instead, let me tell you what I got to do yesterday while I was slowly doing my thing.  I got to talk to people in my hometown that have been praying for me and wanted to know how I am doing, I got to roll down the window and wave to my nieces and nephews playing kickball in their yard (never would have noticed if I was driving), I got to sit and visit with my Aunt & Uncle that came to pick up their chicken plates (and tell my Aunt how her sister drives in a traffic circle), I got to giggle and eat a banana split with my Mama. I got busted by my husband while shopping! I got to get hugs from now adults that remember me as their school nurse. I got to spend time slowly watching, listening & loving the little things that pass us by. It was a great day yesterday. 

Today was pretty much the same way; I got up and walked next door to my Mama’s house for coffee. I got dressed and went to church, talked with my church family, lead the singing and came home to lunch cooked by my husband. Then I had a nap because I was physically worn down. Hey, Sunday is a day of rest and I’m following the Lord’s command – it might be the only commandment I get right some weeks! Perfect example of imperfection right here but I am working on it! 

The Bible tells us: “I can do all things through him who strengthens me.” ‭Philippians‬ ‭4:13‬ ‭ESV‬‬. And I can do it ALL because he has given me strength, determination & the will to keep on fighting, working, Praising Him and piddling along. I want to focus on the positive things that I wouldn’t normally get to do had Myasthenia Gravis not popped into my life. I want to be an inspiration, a fighter, a friend – sometimes life intervenes and we lose the simpler things. I’m so glad that I only have the simple little things right now to focus on. One day at a time, one task at a time, one moment at a time-  it is my life now and for that I’m thankful for each simple little thing and for you!  

My title came from this week at work. My boss asked me how I was doing I said  “I am a turtle”. She responded back “And that OK!”  She was right – I am a turtle and it’s ok with me! 

Thanks for reading my blog! Have a restful Sunday! ~Melynda 

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When you can’t speak…

This past week has been one of frustration, tears & just simply asking The Lord to bless those who are caring for me. I am sad. I hate this disease but I know that God has a plan. I know that his plan when it unfolds will be better than my wildest dreams but I am completely frustrated in my flesh. I just spent 5 days in the hospital in a room with a toilet that comes out from under the sink, no hot water and no place for my family to come visit comfortably. Five lonely days with a tv, iPad & iPhone. The phone would have been great if I could have talked to people but my voice & my breathe that is what was effected. Yes, for those of you that know how much I like to talk, I couldn’t.  As if getting short of breath in my car by myself on my way to work and having to turn around to try to get to an area that I could tell 911 where I was at if I stopped breathing wasn’t enough. I was in the hospital and couldn’t breathe, couldn’t mash the nurse call and was struggling to breath in an ICU unit. I was trying to make eye contact with one of the nurses buzzing around to let them know I couldn’t breathe or move. Finally, it seemed like forever but I know it wasn’t, a nurse looked at me and I had enough energy to mouth out – I can’t breathe. She had a perplexed look and came to the bedside and asked “what’s wrong?”  I opened my mouth to garbled gibberish. She instantly called for help. What if I was in my car? What if 911 heard that? What if the police thought I was drunk? I would NOT be here typing this now that’s for sure. I have cried a lot this week because of those what ifs. God’s plan is far greater. 

Here’s the rest of the story, about 2 minutes after the nurses started scrambling my mama and her sister walk up. I sureLy hated scaring my mama but she & my Aunt Mary were my voice when I didn’t have one. They were able to tell the nurses what was going on, all of my history and keep me off of a ventilator. One of the doctors came to the bedside and started asking me questions. I could see the “Peggy Jean” popping out of my Mama. She was letting it roll. All I could do was let my tears roll to let them know I was scared and worn out. The nurses were wonderful and did their job. The respiratory therapists were great also. They put me on the bipap machine that forces air into your lungs to make you breathe. Once they started that I was able to just surrender and sleep knowing I would be ok. Who lives like that? It stinks to feel that way. The whole time in my mind I ask The Lord to forgive me where I have failed him and to bless those taking care of me. I want to be around to see both of my children grown, I want to be around to see my grandchildren. I want to grow old with my husband like we planned. Long story short, God has plans for us & it doesn’t matter what we have planned.  His plan is always better than ours. This by far has been the hardest blog post to write because I have struggled with how to be positive when actually I am scared and I am sad. I am fighting a battle that this week I feel like I am not prepared for. I am struggling. I am cranky. I don’t know what to do. I had a new port put in and I am very sore so I have a hard time getting comfortable. I didn’t let anyone really know I was in the hospital because I hate the thought of anyone seeing me this way but guess what it’s real, I’m real, I’m perfectly imperfect just like God my creator made me. I felt like you needed to read about the bad as well as the good. We all have down times.  I have missed my family, my work family, my church family, my puppy – 5 days of life passed by without me:  Five days I can’t get back. I really shouldn’t look at it that way but I have. As the kids say, the struggle is real. 

No matter what you are going through, we all have struggles. Some are worse than others but at the time in our lives, OUR struggles seem the worse. Here’s some advice I’m need to take myself – GIVE IT TO GOD COMPLETELY! That’s my problem right there, the very last word – completely. I obviously haven’t given it to Him and let Him be my focus. I have let Myasthenia Gravis be my focus. Today is a new day, it’s Sunday and I cannot wait for church. I need renewal in The Word. Our pastor tends to know just what I need to hear and I’m excited about today. Today, I am Melynda Poss, child of The One True King, not sufferer of Myasthenia Gravis. 

My apologies on being negative at first but it’s the real me. A lor of times, no actually every time someone asks I say “I’m ok” even when I’m not.  God gave me this platform to inspire. How can you inspire if you can’t live it out fully? Like I said previously, I’m perfectly imperfect just the way God made me. The hymn that is currently running through my head is a hard one to live out but starting today I am going to try no matter what the consequences. That hymn goes like this: All to Jesus I surrender. All to Him I freely give. I will ever love and trust Him. In His presence daily live. I surrender all. I surrender all. All to Thee my Blessed Savior, I surrender all. 

Thank you for reading. ~Melynda

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Take the World, But Give Me Jesus…

This hymn was written in 1926 by Fannie J. Crosby and the lyrics ring true today 91 years later. The first verse goes; Take the world, but give me Jesus, all it’s joys are but a name; but His love abideth ever, through eternal years the same. 

As a Christian in today’s society it is spiritually hard to watch t.v., be on social media, listen to secular radio, etc.  We are bombarded with hate, anger, lies and despair and I struggle by letting this “get to me” causing anxiety and frustration. Guess what? Someone with Myasthenia Gravis does not need to do that because it causes flair ups and with that my body is not dependable and I am no good for anyone. God has been pressing on me through family, friends and His still small voice to be a Disney princess and let it go. In fact it’s my Mama’s catch phrase. So I’m trying to learn to let go of the hate that has been shown recently that truly bothers me. This hate has not been shown to me personally, but revealed through social media where be it the news, Facebook, twitter or whatever; it is robbing me of my joy! I refuse to let anything steal my joy. Each day with my family is a gift I intend on enjoying with each breath God gives me. We are never promised tomorrow &  I could die today but I will die rejoicing in the fact that I know Jesus personally! So with that being said I want to touch on a couple of things that God is pressing on me about. 

First, as I sit here drinking my coffee that my $200 Keurig coffee system brewed, typing on my $500 iPad; I have no reason to spew hate about anything. It’s pouring down rain and 5:30am; I am dry, warm and have light to see by. I am a lucky lady. I have many things some people don’t and I don’t have some things other people do. Doesn’t matter to me; it’s just stuff and I have been given way more than I deserve. I live VERY comfortably. Now, I have a second cousin that is 22 years old that has packed up her essentials and moved across the world following God’s call to be a missionary. She is currently in Cambodia and living without family to heed her calling from God. She is far braver than I could ever be, I am proud of her and find strength in her desire to please the Lord. I pray for her and her safety. Please add her to your prayer list, her name is Kristie. Since she has been gone she has lost her grandfather and I know she has to be aching for that loss with no one to physically provide comfort. Peace, direction & safety are my prayers. She is having to learn a new language, culture and a new way of life & here I sit comfortably. Take the world, but give me Jesus has a whole different meaning for Kristie.  She’s ALL in! I desire to be ALL in but I struggle and it is a really hard struggle some days. I am a spoiled brat because I have too many things I am dependent on. I plan to simplify my life this year. Get rid of things that have me tied down and dependent. I can’t take it with me when I die! Heaven has every thing I need! 

Today starts the second day of a new president in office and the news, social media & what people are saying makes me physically sick. Everyone has an opinion and that’s fine but my goodness do we have to be so ugly about it. This campaigning, election & swearing in processes have been the most hateful by far. I chose to get on my knees and pray for the election, not a candidate. I asked God to heal our land because look at it, IT IS BROKEN! He is the only one that can fix it. I do not support the people that are marching, rioting, picketing or sitting in the name of their cause. Why you ask? What good is it doing? We have elected officials in office that we voted for. WRITE them; CALL them; EMAIL them; they make the change! Smashing a window, blocking traffic and  spewing hatred does nothing but cause conflict. These officials make the change and they have to hear from you the voter. Pray about your cause, ask God for discernment. Then write a letter and before you send it please let someone proof read it so that you make your point. I am the world’s besr proofreader after I send something then I want to smack myself. 😳🙄😂 When you take the time to write the letter and mail it it shows that you actually care about what you are fighting for. You took the time to make a clear level headed point not one in anger and hate. Then you go out into YOUR community and talk with others, get them to do the same. This brings on change not what’s happening now! I challenge you to pray for our new President. He said that the government is going back to the people so, WE THE PEOPLE have to go through the proper channels to make known our feelings. It’s obvious that the Peresident doesn’t trust the media and rightfully so! I don’t trust the media for the truth either. Let your voice be heard through the proper channels. I promise if you take a few days to pray over something before you go spouting off at the mouth it will be a easier pill for people to swallow. I am the queen of spouting off at the mouth so I’ve learned this lesson the hard way! I also challenge you to pray for our elected officials: city, county, state & federal. They are human and make mistakes too. They need our prayers! That is as political as I’m going to get! 

Lastly, I wanted to fill you in on me and my battle with MG. I have several things going on. I have a port that according to X-rays has migrated down 2.5cm and is near my heart wall. It will stimulate my heart causing me to go into what called Super Ventricual Tachycardia or SVT. This makes my heart race and I feel like I am running a marathon. My Fitbit calls it “fat burn” and how I wish that were true! My heart rate will get anywhere between 100 to 190. It makes me feel horrible and causes me to be short of breath. Then as I am panting for air, which is repetitive muscle movement for my diaphrapm, it causes the MG to kick in and I feel like a gerbil on a wheel going no where. I went to the Cardiologidt this past week & he wants to do a procedure called an ablation to kill of the electrical node in my heart that is causing the rapid heart rate. However, nursing knowledge tells me; that’s a permanent thing and I still have this port that can keep stimulating the heart. I WANT this port out FIRST!  The referral is in and I have heard nothing from the vascular surgery people since January 9th when the referral was put in. Frustrated doesn’t describe how I feel but I know God has His hand in this whole process. I need to learn patience and understanding – obviously I’m not a fast learner on this! I need to feel settled in my spirit before I go having a permanent procedure done to my heart. The doctor described the port as a switch that keeps turning on this electrical node. Common sense to me is remove the switch! Right? Yeah, pray for this process please! Pray for my family as they are having to do everything because I physically cannot. I am working everyday, but I cannot drive. I mean would you want me on the road and my heart rate shoot up? I get dizzy and faint and could wreck; so for now my Mama drives me. If my heart weren’t the issue I feel strong enough each afternoon to drive. I do feel like the medicines are being effective and helping me to gain my strength daily as far as the MG is concerned. If it ain’t one thing it’s ten! 

One more confession. The other night on facebook I posted about not realizing how sick I look. I have a confession to make; we got the wedding picture back and I didn’t even recognize myself. Yes, I look in the mirror daily to brush my hair and all but through this disease I have lost my smile (not to mention he 40 pounds I’ve gained). People used to tell me I smiled all the time and I simply cannot. My muscles don’t work like they once did. My children have asked me multiple times if I was mad about something and I didn’t understand what they meant – until I saw the pictures. It made me very upset to see that while others were smiling and joyful – I looked mad. When in reality I was VERY happy for Kathryn and Jaron. Their love for each other was so obvious to me that day. The wedding was everything I dreamed and more. They were both pleased by it and all of the guests seemed to have a good time. My vanity robbed me of my joy – how stupid of me! As my coworkers said you were there, you could have not been and that would have been much worse! How true! Forgive me for my wallowing in self pity. Here are two pictures one that I snagged off of snap chat (Thanks Devante!) and one that my son took. I cut my phone off that day so I could live in the moment! And boy was it worth living in the moment! 

This is Kathryn & Jaron right before cutting the cake.


This is Adam and his sweet girlfriend Isabelle:


As I close this blog post I want to share the last verse of the song with you: 

Take the world, but give me Jesus; In His cross my trust shall be,  Till, with clearer, brighter vision, Face to face my Lord I see. Oh, the height and depth of mercy! Oh, the length and breadth of love! Oh, the fullness of redemption, pledge of endless life above! 

Thank you so much for your prayers, encouragement and support! There are not descriptive enough words to let you know how much they mean to me. I love each and every one of you! ~ Melynda 

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Confessions of the Mother of the Bride…

So if you haven’t read my blog, seen my Facebook, instagram, Snapchat or heard me you would never know my ONLY daughter got married last night. If you fit in that category, Hello! I’m Melynda. I have Myasthenia Gravis and this is my blog that I write to share my thought and opinions. I’m not anyone special, just a wife, mother & Christian. Do I get it right all the time? Do I have my act together? Do I know what I’m doing? Heck NO! That would require me to be perfect or close and this chick is flawed! So if your still reading, welcome! 😁

Ok, so it’s 4:30 in the morning after my daughter’s wedding and all of these things are popping in my head. Things I feel I need to share for all the other mothers out there planning weddings for the first time. 

1. Stress will eat you up and spit you out even if you don’t have MG! Add MG to the mix and that has equaled 6 ICU visits within the last 7 months. Sweet mercy, I know the staff at AU Healthcare 3 West Neuro ICU let out a sigh of relief tonight that I didn’t show up!  They have become my second family! So my advice which is hard for me to take is don’t sweat the small stuff the day of the wedding. We had a schedule &  a wedding coordinator – remove your watch, cut off your cell phone and simply enjoy the day. You should hire a photographer let them take the pictures. Soak up these memories in person!  

2. You cannot prepare for everything so do the best you can. Yep, it’s hard advice to take too! Make lists, check them twice and start packing and labeling things the week before. 

3. Hire a good caterer. I know a guy if you need him –  Cal Berry. He pays attention to detail and is simply the best. I’m surprised his webpage isn’t thabomb.com. He saw my vision and made it better than I could have dreamed. My daughter did very little to plan her wedding so I hope she liked it! 

4. Hire a wedding director. I have a friend I work with at one of the local funeral home. Murray is the cream of the crop! He can get people where they need to be and things rolling along so you don’t have to worry about it. Trust me I laughed with him & cried with him tonight he help make things run smoothly and if they didn’t I surely didn’t know about it! 

5.  In Lincoln County, GA we all have multiple jobs. I’m a nurse, lead the music at church & help out at the funeral home but only with computer stuff. You know as a nurse you take care of the living, let’s just say the living I’m taking care of is the funeral home owner that’s a little technically challenged. (His wife is probably giggling and he is probably rolling his eyes right now! 😂😂) 

This leads me to my next thing. Our county coroner/retired school teacher/undertaker/preacher married our daughter. Yep, he has a bunch of titles! Kathryn wanted Mr. Paul Reviere (actual name BTW) to marry them. When she asked him her words were: “Mr. Reviere, I want you to marry me.” His response, “Kathryn I have a wife.” We were at the funeral home at the time and couldn’t help but laugh! He agreed and married them. He has always called Kathryn “Little Nurse” so before the ceremony he told her that if we would have had a rehearsal that he would have pronounced them Mr. & Mrs. Little Nurse. We all giggled. Then he went to her Maid of Honor, gave her the ring told her what to do followed by if you drop it, don’t bend over. I will say a prayer until you find it. When you do pull on my pants leg, stand up and I will say Amen! Morgan’s response was giggling and “He knew I’d need a back up plan!” When she passed the ring she looked directly at me and I smiled real big and gave her two thumbs up!! Mr. Reviere has known these girls all their life and it really made it extra special for all of them!! 

6. Expect the unexpected! We were suppose to have Snowpocolyps on the wedding day. It amounted to 20 flakes. We thought it would keep people away but it didn’t. Packed house! Kathryn fretted over this the night before. She even said “Mama I am scared no one will show up.”  I told her she couldn’t control that and it would be ok – as I worried about the same thing. When we got ready to enter there was a line waiting to be seated! Kathryn’s bridesmaids relayed the message of the church being full to which she replied “I didn’t think that many people liked me.”  Her maid of honor responded “Me either!”  Lots of giggling ensued. Laughter is always the best medicine especially when things are stressful! 

7.  Pamper yourself. Take the time to just do it. I had nails, hair & makeup done. It was super easy on me I just showed up!! I loved my hair & nails. Make up was ok. I do not ever pencil in my eyebrows and felt like I had these caterpillars tattooed on my head! NOT. A. FAN! So you might want to go for a trial run. It took about 3 hours to get use to the fake eyelashes too. So there was a time I felt like I had two sets of caterpillars. Just my advice! 

8. The cake – wedding cakes are expensive! Take the time to choose the right person. I have a friend who does them. She graduated with my brother & she amazes me with her creations! Diana takes the time to get to know about the couple. She prays for them and then she puts her heart & soul into her cakes. They are simply beautiful and delicious. When we got home my husband said (as we are laying in bed)  “You want another piece of cake?”  I laughed! We were too lazy to go cut a slice so we will partake in the morning! It was a stunning cake I will not lie! It was delicious too!! 

9.  Let folks help you out. A lot of people offered their help to me since I have been sick. I honestly have a hard time asking for help and since getting sick I can’t do a lot of things I used to. This brings me to my next set of folks. Have key people to just be there for you. My cousin Gina (who is 9 months & 1 day younger than me) is like my sister. She told me she was coming to help. I am so glad she did! She picked up the sandwich tray for the girls, she helped me & Mama get dressed. She ran errands if I needed them. She was a God send! Another friend who’s daughter is getting married offered to have her hand ready to slap Kathryn if she started being a bridezilla. Suzanne had the slapping hand ready but didn’t need it. I’m still giggling about it!  My co-workers came and they were my monitors. Alice instantly picked up on when I felt bad. When I sat down she was right there asking me what was wrong. I had taken off my Fitbit prior to the service and skipped a dose of medicine. When my speech started slurring I realized it. She stayed with me followed by my two nurses Danielle & Donna while my sister in law, Jenni went to find my meds. Tal instantly knew something was up and followed Jenni to search for my meds. Jenni also fixed me food. People like this are priceless to have. I knew when I needed something for myself it would happen. Plus, I think it gave Tal some relief to know I would be ok. We had made a back up plan if I were to crash at or before the wedding. It ensured the wedding would still go on and my folks would take care of me. I have the best friends and family! 

10.  When we started this process I decided to use the model I was given by my parents.  Jaron & Kathryn are marrying period. I wanted to make sure that they had the best chance at making this work by working together as a team with his parents! After all they will be the other parents to Kathryn & grandparents to my grand children! I’ve never done this before so I simply told Nancy how I felt. She felt the same way! Let me tell you that I just got an entire set of family that I adore! Most of them I just met on Friday and I can’t wait until we get together again! I am thrilled that Kathryn married into such a wonderful family. The rehearsal dinner was laid back, cozy and allowed us old folks time to chat!! What’s funny is most of them live in Connecticut and here we are in Georgia. I was afraid they would be overwhelmed by our “county” – they embraced it!  I’m excited for this new chapter in our lives too! Some of them I didn’t get to say goodbye to tonight but I will see them again! On a side note: Nancy planned her stuff from out of town not to mention they had hurricane damage to their home during this process! She amazed me with her mad skills! 

11. Kathryn is very sentimental. Most people may not know that about her. She wanted to have things at the wedding that were heirlooms. So here are the things if you attended you might not have known. Her veil was MY veil. I had a moment when I realized the last time that veil was on a bride it was me and my daddy was walking me down the aisle. He died in 2015 so it was very emotional for me. She carried a handkerchief that Tal’s grandmother made with tatten made by her mother. Tal’s grandmother is 93 and was not able to attend so having a little piece of her there was so special. The silver goblets they toasted with belonged to Jaron’s parents, Nancy’s father was a silversmith and hand made them for their wedding day. They were stunning! I’m so thankful she included these things in the wedding! It made it extra special. She also danced with her dad to a song “The Best Day”  by Taylor Swift.  She cried when they danced. Tal told me because it reminded her of his Dad. I think both her Grandpas were brightly smiling from heaven tonight. 

Now on a lighter note:

1. Tal walked me down the aisle. Did I mention I have Myasthenia Gravis? Did I mention I was in a formal dress & heels? That was my goals to be at the wedding and walk down the aisle. Tal is 6′ 3″ tall and he literally drug me down the aisle. I made people giggle when I said through my smiling teeth “slow down”. When we got home he ask if he was I really walking too fast? I just looked at him in disbelief. I asked him if he knew how close I was to falling over. I mean it’s not hard to state the obvious when they are two steps in front of you dragging you. 🙄 

2. Best feeling ever…taking out my contacts and washing my face. Have mercy at the make up I had on. I wasn’t sure how to get the eyelashes off but enough scrubbing they just came right off. Greatest feeling ever! Oh I removed the other caterpillars too! That really took some scrubbing! 

3. You probably want to know why I’m up at this hour. Leg cramps! Horrific, deep leg cramps that woke me up with pain. The only thing I can do is try standing and walk them out. If that doesn’t work a good epsom salt soak helps. So I got in a warm bath only to bring me to my next advice. WASH your hair before you go to bed. We got home at 11pm and I washed my face and laid down. I was exhausted. Well after about 15 minutes relaxing in the tub I realized the can of root pump and 2 cans of hair spray had me glued to the tub wall. Have mercy! I had to use my toes to cut the shower on to unglue me! It was comical and I was trying not to wake my husband. Well, the great gasp I let out when the cold shower water hit me the face remedied that! He woke up only to realize I was ok and then went right back  to sleeping. So take 10 minutes to wash that hair! You can thank me later! 😂
I can honestly say the wedding was perfect! Every single bit! I am certainly glad it’s over!  I wish I could have spoken with everyone there. I tried my best but it was packed. Our baby is married to the man of her dreams. I have gained a son and whole new family. I can take today to rest up, before going back to work on Monday…Life is good! 

Thanks for reading! ~ Melynda

P.S. Kathryn & Jaron if you happen to be reading this – Adam said y’all owe him big time! Hahahaha! He will be collecting! He has toted stuff & not complained one bit. So I decided that y’all can be His help with prom decorating. That sounds fair right? It’s just one weekend! 😂😂😂 I forgot Cash probably feels the same way. While y’all were honeymooners they had to pack up all the stuff at Sacred Heart to get it home then unpack it once we got here. There is no telling what he’s expecting as payback!  😂😂😂

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