Oh MG! (Myasthenia Gravis)

Yes, I said it! People choose not to make lemonade! Life is not always bubble gum and rainbows & I’m guessing if you are reading this you already know it. The God of the Bible, in whom I worship and serve, never promises life on this earth without conflicts. The Bible states many times when believers were persecuted but God prevailed every single time. Daniel in the lions den (Daniel 6), the fiery furnace (Daniel 3) and Job (the whole book). Each time these Christians believed and God delivered. It wasn’t easy, can you imagine being thrown into a den of lions? A fiery furnace? Allowing Satan to take away everything you have, your wealth, health & family? I cannot imagine that kind of fear however I know the fear I have in my daily life. 

Life has handed me lemons, an entire flipping forty acres of lemons – as far as the eye can see! It’s called Myasthenia Gravis. Why do I have this? No one knows. What causes it? Not sure. Can I be cured? No, maybe who knows. Those are man’s answers. However, I serve a risen Savior who’s in the world today! I know that He is with me whatever men may say! I see His hand of mercy, I hear His voice of cheer and JUST the time I need Him He’s always near! You’re singing aren’t you? I did! He does live! I think sometimes we forget that. We get bogged down in life on this earth and we forget that we are not of this world, let me back up – if YOU have accepted Jesus Christ as your Savior and have a relationship with Him, YOU my brother or sister are not of this earthly world! 

Not choosing to make lemonade shouldn’t be an option for you! Think of what lies ahead! I have my moments when I let life get me down, I am not perfect. In fact you will never hear me say that. I am flawed! Some moments I choose to wallow in self pity. Praise God those are getting to be fewer and farther apart! Life is what YOU choose to make it. That is right, YOU! Happy? Sad? Cheerful? Miserable? You hold that power. You also hold that power to turn people off to Jesus. Just a thought. Many times it hits me that I may have done something that turns someone away from the best gift ever given. It breaks my heart and I have to ask God to forgive me and try to make it right. 

As we celebrate this gift giving season, remember the greatest gift of all -Jesus. He came to earth in the most vulnerable way, a baby. He gave his life so that we could live! So here is my challenge for you; whatever your situation, there is always someone in a worse one. Whatever your health, there is always someone sicker. What ever your financial status, there is always someone poorer. Life will give you lemons, just make lemonade…always make lemonade! 

Merry CHRISTmas to you and yours! ~ Melynda

This blog post is dedicated to all the hard working staff I call my hospital family at Augusta University Medial Center 3West Neuro ICU. 

Let me start with this: I’m currently in the hospital again, the second time this month. Stress is a literal game changer for someone with Myasthenia Gravis and being the perfectionist I am means I have been in overdrive! It took my hospital family having an intervention to make me realize I am killing my self over a wedding.  I have tried to dole out duties and let someone else do them but when they are not done in a timely manner I have panicked! With than being said I’m trying to learn how to take care of me. That is not an easy thing because God made me to be the care giver. Tal fussed at me today and called me “Charles Fuller”  because I won’t let folks know how I really feel – “Hard headed just like your daddy”. Touche’ I admit it – I am hard headed. 

Thankfully this hospital stay has brought a few more things to light. An episode yesterday of tachycardia that lasted about 3 hours was an eye opener! A heart rate of 160-170 will wear you out! I sweat like a marathon runner and was congratulated by my Fitbit on burning 2500 calories during my “cardio workout”. Let’s just say that I hate a gym but I hated that “cardio workout” even more!! The doctors administered an IV drug that was intense!! The cardiologist and neurologist were in the room and assured me the chest pain and shortness of breath wouldn’t “last long”. I guess the deer in the head lights looks I gave them during it made them gather round and reassure me during the process. For a good 30 seconds I thought the next face I would see would be Jesus! I knew I would be fine either way and here my old hard headed tail sits alive and kicking. 😂😂 I now get to be on a medicine to regulate my heart. I think Tal’s grandma is on the same stuff.😂😂

If you are reading this; Thank you for caring, praying & sending love my way. I say it all the time – Prayers have sustained me this far.  May 2017 bring you a Healthy, Prosperous New Year! 

As for me, I’m going to try to learn to take care of me so I will be here for others. The wedding is next weekend so get ready, there will be sappy posts ahead. I only have one daughter and I’m posting so she will have it in the future! And it will be the truth because it will be on Facebook! 😂😂

😘😘😘😘 -Melynda

This past week has been a new low for me in my fight against this dread disease-Myasthenia Gravis. By low I mean I have never been this sick in my life. I spent the last six days in ICU running fever, having horrible headaches and the nausea was off the chain. Not a good combination to say the least. I was off and on the Non Invasive Ventilator at first. Having horrible headaches and no one was sure why. I honestly thought I was going to die. I know I scared my family half to death but especially Tal. Days passed and he sat in the recliner in my room with the TV off, at the times I was awake he was there to tell me he loved me. I knew he loved me but this was beyond anything I have seen. My head was pounding so bad that I could hardly function. I was physically miserable. I thanked God for My family and told him whatever His Will was I was ok with it. I know He has plans for me because I am still here. Mama brought me home last night and I’m still in bed. My final diagnosis was aseptic meningitis – google that and scratch your head like i did. Basically i had a reaction to my IVIG, the monthly infusion i take and no one knows why.

Today I have spent the day in bed because I’m sore from the lumbar punctures and the blood patch they did yesterday to seal off a leakage caused from the lumbar puncture.

The Bible never says it will be easy to be a Christian, we all will have battles. So here I am still fighting, until the good Lord says it’s my time to stop.

Thank you for your prayers, texts, and calls. I apologize if I haven’t responded or they didn’t make sense. All I can say is I was not always in my right mind when I responded.

All my love ~ Melynda

So there are times in a parent’s life that children tend to cause a sudden shock to our systems. You know what I’m talking about right? For instance, you unexpectedly get pregnant when you have a six year old and you have been trying for 4 years. Or said baby come out with reddish blonde hair and bright blue eyes when your first child has brown hair and brown eyes. Another example is when your mail lady sends you a private message asking if that is your son on the camo golf cart riding in our yard peeing off the side, (she also stated “I thought that was Tal Poss’ kid). The list can go on forever with this one and I am not kidding. Do you know that I have walked through Wal-Mart with a smiley face sticker on each butt cheek only to get to the car for him to take his thumb out of his mouth and tell me to turn around. He promptly plucked the stickers off of my butt and put them on the back of his hands….UGH! Adam is quiet and always has been so he could just do stuff and you would never know it until the proof came out! This kid has always been FULL of surprises. Over the years I’ve learned to laugh and forgive him for many things.
Last night was no exception at all, he told me less than twenty four hours before the event that he was invited to the Academic Awards Night at school. I asked him what he was getting and in true Adam response he said “I have no idea.” So I frantically tell my mama & Tal’s mama about it and make a call to his sister in Charleston. She assured me she would be there and not to tell him in case something came up. Our entire family was already exhilarated by the LCHS Golf Team winning first place in their region on Monday night and now he gets an invite for Academic Awards!! Woot Woot!!
I’m going to back track for a minute so I can explain why I was so shocked by his invitation. When he was in 10th grade I met with Dr. Gunby, the principal, and told him that I was not going to set Adam up for failure just to be an honor student. Some changes had been made to the way you became an honor student and it is pretty rigorous. Adam is my carefree, do just enough to get by, fly by the seat of your pants and make NO plans kind of child. Get my point? I have always picked my battles with him and I was not prepared to fight with him and make him hate school. I never thought anything more about it to be honest with you. I was just glad his grades were good, he was an athlete and all around good kid. He was able to get accepted to Augusta University, his first choice so Mama was happy!
Tuesday night made Mama so happy she couldn’t even sleep! We are sitting there about 8-9 rows back from Adam and they announce the SAT/ACT High Achievers category and what had to be accomplished to receive this award.  I knew that Adam would be getting this because he did good on his SAT. It came with $100 to put toward his education. They called his name. I was so proud and figured that was it. When they got to Scholar Athlete Awards I figured it went to the kids that were recognized through the year as scholar athletes. They stated that they had to play sports for three years and have an overall A average. THEY CALLED HIS NAME! I leaned over, told Mama “he has an A average” and we just grinned. He walked like he was trying to catch the bus on the highway of death to get to the stage and we clapped. I snapped pictures it was great! The program continues and give away what seemed like a million more awards and I figured that was it for Adam.

Myasthenia Gravis was not being very nice and trying to make me look a like Popeye – Grumpy Cat combo. When I am tired I loose all ability to control my facial expressions and my right eye just shuts. It’s not a pretty look that is for sure! After loosing the facial control, my neck gets weak and then my arms and legs. One thing I have a bad habit of doing when I get tired is moving my arms and legs. If they stop working I am up poop creek with no paddle. Someone is going to have to physically get me to the vehicle. I wish I could say my husband whisks me up in his arms and carries me wherever I need to go. Nope, it’s more like he bends over hoists me up over his shoulder and just totes me flailing around to the car. Yep, butt in air, head flopping ugliness going on. Anyway, Tal was not present for the awards, he chose to stay home, guess who is regretting that choice?

Anyway, I am wiggling and moving around making sure my body is going to work for me so I can leave on my own accord and all of a sudden in the middle of handing out gold tassels to the honor graduates they get to a couple of kids in front of Adam. We sit there patiently waiting to leave and next they announce “Adam Poss”…all four of our jaws dropped in our laps and I burst out in tears. My baby boy achieved something I had put aside as him never wanting to be bothered by. In a million years I never dreamed he would achieve this and it’s not because I didn’t think he could, I just thought he would never want to. I have made HIM do ALL the work his entire high school career. My philosophy is “I am not fixing you supper while you are 40 and still parked on my sofa!” You have to do it yourself and he did!
My mother in law described it best as “pure pride” that we felt. We were beaming! When Adam looked at us he gave us his trademark crooked grin and I swear his tooth in the corner of his mouth cha-chinged in the light like an Orbit gum commercial! And then he walked like he was still trying to catch the bus on the highway of death while racing snails. BTW-The snails were in the lead.

When it was all over I told him how proud I was of him and asked him when he knew. He said “UUUHHHH, when they called my name.” That is Adam for you! My goodness my heart is so full and happy right now I can hardly stand myself. My baby will be walking across the football field his grandmother, father, sister and numerous other relatives walked to receive their diplomas in just a few short weeks. I love life in our small town. I am attaching a video with just one of the highlights from this week. The seniors don their caps and gowns and walk through the halls of the same elementary school they attended to the delight and applause of the children attending there now. Last night I made sure that Adam had all of his stuff so he could put on his attire and proudly walk through the school one last time. He assured me he had it all this morning when I called to wake him up. “Have a great day, I love you” I said. “I love you too” he replied. All was well with the world. My friend Kathy Moore recorded this video for me and sent it to me. I was beaming with pride in my office only to see Adam looks naked under his gown because all I can see is hairy legs and tennis shoes. Good grief! I immediately text him and asked him if he was wearing shorts to which his text reply came back “maybe”! Oh sweet mother of pearl, my life will never be boring with this one!

Thanks for reading, sorry if I chased too many rabbits, excitement will do that for you!
~Melynda

Through my battle with Myasthenia Gravis there are things I don’t like to share. Things I don’t want people to see or hear but, this week has been rough. One of the symptoms that I struggle with is a feeling of “impending doom”. It’s hard to describe and share how I truly feel. This feeling is not every day. It comes at random times and when it hits it does not play. I feel like I am going to die, at any given moment.

This past Tuesday when I woke up I knew it was not going to be a good day. My first thought when I hit my alarm clock was – I am not going to be here for Adam’s graduation. I know that this is not real. It is not me, it is not how I am made but it is debilitating. I refuse to give in to it so I do my best to ignore it. I got dressed and cried because in my mind I was going to die while having a bad hair day. I prayed for strength to fight this demon. I get in the car and start to back out the driveway when I have to stop and pray away the fear of dying in a car wreck. For the past couple of months to conserve energy and keep people from worrying about me I have been riding with a friend from work. I meet her at her house. On Tuesday when I got in her car Donna looked at me and said “How’s it going?” I cry again and have to explain what’s going on. Donna is ever the optimist and said “It’s going to be a great day today!” I get to work and cry because my pen ran out of ink. I’m not sure how that was going to kill me but whatever! I go to the bathroom and decide I’m going to die in the bathroom at DDEAMC because I might fall and hit my head. Jeepers! It was an all day affair of fear, prayer, fear, prayer. I think I prayed so much Jesus even said “It’s her AGAIN?”

I’m driving home from Donna’s house and Kathryn calls. We are talking when she makes a joke and I…yep you guessed it…burst into tears. Since getting diagnose with MG I have been so worried about my kids not being effected by this that I had not shared with Kathryn this part of the process. She took it better than I thought and assured me everything would be fine. She had no clue I dealt with this. I think she was speechless when I told her I cried about possibly hitting my head on the toilet and dying. After a long pause she said it you die that way I am putting it in your obituary. Note to self, I must die in a non dramatic fashion. 😂😂

I get home, pick up Mama and we go to vote. I see one of Kathryn’s life long friends who asks me how I am doing. At this point I can’t cover up the fact I’ve been crying all day. I look at Rozina and tell her that i am not having a good day. Her response is jumping up from her chair and embracing me in a huge hug in which she tells me she loves me and it will be ok. Well, that made me tear up even more! That small gesture meant more than she will ever know.

I finally make it home and Adam had come in from the State Championship Golf Tournament he played in on Monday & Tuesday. They didn’t place anywhere near first but they had fun. The team played in the pouring down rain and he made memories. He made me smile when he came home talking a mile a minute because that is rare. We talked for a bit and i went to bed.

When I woke up on Wednesday morning just as quickly as it had appeared it was gone. I felt good mentally and physically. I know it’s long and boring but I want people to know that sometime I simply cannot say that I’m doing good. Some days just stink and there is nothing you nor I can do about it.

I am not scared of dying at all. I have peace in knowing I will be with Jesus. I know that I will be healed in the heavenly fashion. However I would love to see Adam graduate tomorrow, meet my grandchildren (no she is not pregnant) and grow old with Tal like we planned. But let’s face it; we are not promised tomorrow. So, as for now I am making the most of each day I spend here on this earth. I do know what I am promised; eternal like with an Almighty God! How exciting is that? It reminds me of a song that I love to sing:

There is coming a day,
When no heart aches shall come,
No more clouds in the sky,
No more tears to dim the eye,
All is peace forever more,
On that happy golden shore,
What a day, glorious day that will be.

What a day that will be,
When my Jesus I shall see,
And I look upon His face,
The One who saved me by His grace;
When He takes me by the hand,
And leads me through the Promised Land,
What a day, glorious day that will be.

There’ll be no sorrow there,
No more burdens to bear,
No more sickness, no pain,
No more parting over there;
And forever I will be,
With the One who died for me,
What a day, glorious day that will be.

And what a day that will be but for now I will keep praying and plugging along!

Thanks for reading ~ Melynda

God gifted me with the most wonderful, loving, hot tempered, hard headed handful of a father. I can say that because I’m just like him in a lot of ways. He loved with every part of his being, he got mad with every part too! 😂 We would butt heads like goats in a fight, say our peace and return to our corners never to discuss the dispute again. My brother…he is exactly like my dad. I can hear his grunt and eye roll over that read now. My mama has had an entertaining life to say the least! She has had to laugh to keep from crying.

In life we are given one biological father: good, bad and indifferent that is the truth! My daddy has been gone for 3 years and Father’s Day has and probably always will be tough. I was a Daddy’s girl. I went fishing, hunting, working, fire calling, truck driving, school skipping 😂, grocery shopping, house remodeling, step by step with my daddy. All the way to the end of his life. I was sitting in a chair next to him when he took his last breath. Tough? Yes it was tough but what was worse was watching this man full of life and personality be stuck in a hospital bed day in and day out telling us he was useless. God made that easier for us to let him go. There are days I miss him like crazy and days that I celebrate the wonderful life he and Mama provided for us.

If you are like me there are many men who have fit the “Father” category that have had an essential part in my life. My daddy’s friends treated me like their own and they still do! Since my diagnosis of Myasthenia Gravis my Daddy might not be here but MANY have filled that spot! Daddy’s best friend Billy comes to mind first. When I’m sick he and his wife Sonora are there. He has cried for me, prayed for me, worried about me, fussed at me and filled my daddy’s shoes. In fact, if he is reading this, he is more than likely teary- eyed and I will get a phone call.

Other men that don’t have to but choose to fill my daddy’s shoes are his brother Gene, his best friend Steve, my Uncle Ben, our friend Kenny, our Pastor Jerry, my brother Wyatt and my husband Tal. I might not talk to them everyday but I can’t get away with nothing! I know that all I have to do is call them and there they are, no questions. They keep check, take care, fuss over and keep me in line. The difference between them and daddy’s is that they do it gingerly. 😂😂😂 Tal is the only one that give me the head butting goat fight and maybe Wyatt occasionally. One of the last times my daddy was in the hospital he called me back into his room when Tal and I were leaving to say these exact words: “Did you know that you did a real good job finding someone just like me? Boy, Tal is just like me!” I laughed and replied “Yes sir, you have know idea!” Mama and I laugh a bunch of days because Tal feels like he has to keep up with the two of us! 😂😂 Good luck!

I have been so fortunate to have the love of a good father in my life time. For those of you that know, it is priceless. For those of you that haven’t experienced that yet, there is such a thing. Our Heavenly Father provides such a love for us that is unmatched by anything you or I have ever know and all you have to do is accept it. I never dreamed that I would lose my daddy at soon as I did but God has stepped in, showed up and showed out in ways that are indescribable and unimaginable. He has provided love and comfort when I needed it and He can provide for you too. While I miss my daddy I have peace in knowing he is waiting with my Heavenly Father on me one day. So this Father’s Day if you have your Dad present, hug him tight, tell him that you love him, put down your phone and spend time with him because we are never guaranteed tomorrow. Make those memories while you can.

To all of you dads; Happy Father’s Day!

Much love and thanks for reading! ~Melynda

Two years ago today my life changed in ways that I would never have imagined. I was sidelined with a diagnosis that has literally stopped me in my tracks on more than one occasion. Fifteen to be exact within those two years! It has been a whirlwind of a ride to say the least. My normal now involves a lot more time at home and a lot more rest than I used to need! Long gone are the days of staying up half the night cleaning out closets, painting rooms, installing floors or whatever else that needed to be done. Now my days are different than they used to be and for a long time I mourned the person I once was but today; well today is a different story.

Today I have a few things I’ve learned in the past two years that have kept me grounded and fighting each day. Here they are:

1. There is a God. He is real. He is on His Throne and He loves me. God has more elaborate plans for me. Several times I have come close to not being here. He obviously isn’t through with me yet! I can’t wait to see what’s ahead!

2. My bed feels so good! I have to rest there is no choice. I cannot function without it. I never realized how good a bed could feel but I love our bed! In the evenings I can be finishing up the dishes and ask Daisy (my dog) “Do you want to go get in the bed?” She spins in circles because she knows what’s coming! 😂😂 She is a little spoiled.

3. Family is everything! You cannot pick your family. They might tick my off but when it comes down to it mine are the best. They have stood by me on my good days and bad. We have laughed a lot, cried a little and fought this fight together!

4. Prayers have sustained me this far. I appreciate everyone of them. There have been times I have felt like someone has wrapped their arms around me and it’s usually when I’ve been struggling with something.

5. Prednisone is of the devil! Not only has it ballooned me up to look like the man in the moon it has caused me to become diabetic. A diagnosis I never wanted to get. Hopefully once I get off of it the diabetes will go away. I am currently trying to control it with diet. Call me out if I’m cheating! I will deserve it because my life depends on it!

6. Myasthenia Gravis is as complicated as they come. Nothing is ever the same twice and I have days when I still am not sure of what is going to happen. It proves exactly how intricate the human body was designed!

7. Rushing is not worth it. I cannot physically run or hurry myself. The more I try the more overworked the muscles get then the less they work. It’s a vicious cycle so I just stop and smell the roses. My dad used to say on the golf course take your time, feel the breeze, listen to the birds, smell the grass, relax, enjoy. I think of that a lot of days when I’m slow moving! I enjoy the slow pace that we tend to lose when we become adults.

8. Sit at the table for meals with the family. Soak in the laughter, smart comments, jokes and sheer delight on the faces of your loved ones. This makes me happier than most things because everyone I love is right there enjoying each other.

9. Don’t give in to the diagnosis. If I wanted I could file for disability and sit my butt at home everyday but what good would that do me? I want to serve a purpose and be around people. I want to live each day to the fullest. I might have this disease but it doesn’t have me!

10. Live each day like it is your last. It might be, we are never promised tomorrow. I make sure my folks know I love them because I do. Chances are I will tell you too because I do!

And last but not least…Do NOT fret over the small stuff. It doesn’t matter if my hair looks funny or I have to wear my coke bottle glasses. It doesn’t matter if my plates don’t match my cups. It doesn’t matter if the dog brought some dirt. In the grand scheme of things life is too short to let anything or anyone steal your joy! Be happy!

So as I think back in these last two years some may think it’s a curse but I consider it a blessing that I can focus more on God and less on this world! My relationship with God has become stronger that I ever dreamed. I’m still learning and growing but it’s closer to Him!

Have a great day! I know I am! 😘😘 ~ Melynda