The If’s Have Had Me…

Do you ever live life wondering ; “what if?” “only if?” “I should have…” “Lord, if you, I will…” ?  You are not alone! This chick does it all the time.  You know why? I am imperfect, faulty, whatever you want to call it but I am human. Some nights when I can’t sleep (thanks prednisone) my head rattles with all of this stuff around in it and it could drive me crazy. This week has been a struggle. We learned that someone VERY close to us has terminal cancer and we are heartbroken.  We love her and want her to be with us forever. She knows The Lord and for that we are thankful! She is the epitome of a Proverbs 31 woman. She is far precious than “rubies” to us that is for sure .  We are thankful for the joy she has brought to me for over 27 years and to my husband his entire life.  She has never treated me as anything but family. As for my husband, she is partly responsible for him be a spoiled, not the right word. Let’s start over; She is partly responsible for him always getting his way.  Yes he is spoiled but so I am – she helped with that too! She has spoiled us all over the years!  While having my pity party off and on all week I kept asking why her, why this precious family & then Satan would get me – why me? I have prayed off and on everyday for The Lord to be gracious and then I would have a pity party again.  Satan is such a liar! It was on the way to work one morning that a song came on the radio and it hit me…like a lead balloon! Sometimes God does not choose to move our mountains. The song is by Mercy me and the lyrics go:

They say sometimes you win some
Sometimes you lose some
And right now, right now I’m losing bad
I’ve stood on this stage night after night
Reminding the broken it’ll be alright
But right now, oh right now I just can’t

It’s easy to sing
When there’s nothing to bring me down
But what will I say
When I’m held to the flame
Like I am right now

I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone

They say it only takes a little faith
To move a mountain
Well, good thing
A little faith is all I have right now
But God, when You choose
To leave mountains unmoved
Give me the strength to be able to sing
It is well with my soul

I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone

You’ve been faithful, You’ve been good
All of my days
Jesus, I will cling to You
Come what may
‘Cause I know You’re able
I know You can

I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone

It is well with my soul
It is well, it is well with my soul

How true it is! Sometimes we just have to have faith that God is ALWAYS moving FOR us not against us and the mountains and hurts are a part of life.  We are ever changing vessels to HIM. We are to grow and strengthen in HIM.  Building our faith is just like building a house. You have to start somewhere with something. The Bible states “faith of a mustard seed” is all that is required to move mountains.  You want to hear a “God wink”? After all of my self pity this week & hearing this song EVERY DAY on the way to work; this morning at church a couple came to see their grand daughter & daughter in law be baptized. I grew up with this man’s children but I haven’t seen him in 20+ years. He used to make leather crafts, I still have the wrist cuff me made & handpainted for me with my name on it.  Mr. Charles Reynolds is his name.  I’m telling you it’s been a really LONG time since I have seen him.  I introduced myself to him & his wife by my married name and then realized who they were and re-introduced myself by my maiden name. Remind you I have to wear a mask for my protection when out in public so I don’t catch any illnesses because my immune system is weakened due to all of my meds.  They asked me why I wore the mask I told them that I had Myasthenia Gravis. They looked at me like everyone does – like I am speaking a foreign language. I explained a little bit about the disease process.  Later on during the church service between hymns I announced that I had a praise, I am on WEEK 11 of no hospital stays!! WOOT WOOT! My little country church members have been earnestly praying for a miracle for me.  It was not until this week when I realized this IS MY MIRACLE!! Sometimes GOD DOES NOT MOVE THE MOUNTAIN; I am ok with that! I still have Myasthenia Gravis – I am ok with that! I am, however, learning to live a new normal life with this disease.  It does not have me – I have it!  Ok, I am chasing rabbits – back to the point. Mr. Reynolds came up to me after church and told me he was doing a project that he wanted to tell me about it. He quoted this verse:

He replied, “Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.” Matthew 17:20

And then proceeded to tell me he put mustard seed in an envelope and handed them out to people with the scripture on it. I did say I had not seen him in years right? Do you ever feel like God is standing beside you? Today I did, I felt as if I had looked over my shoulder He would be staring at me, probably laughing because of the shocked look on my face. Thank goodness a mask covers up half of this ugly mug that cannot hide my facial expressions.  The only thing I could respond to Mr. Reynolds was “I know God is going to heal me, He has already done so much!” Then I thought to myself “Dummy what have you been struggling with all week long?” OH YE OF LITTLE FAITH!!

So yeah, sometimes I win some, sometimes I lose, but right now I am winning! God always confirms to me when I don’t think I am going to make it that HE has me & I will be able to sing It Is Well With MY SOUL!

Prayers for my family and our loved one are greatly appreciated. When I have talked to her this week I have asked what she needs and she always says “Say a little prayer for me.” I have that covered over and over again!

Have a great week! I am off to pick up my daughter and son in law from the airport. They have been honeymooning in Barcelona & Sweden. We are excited to see them but my heart aches that we have this sad news to tell them. When this posts everyone will know the news we have managed to keep off social media for a week! If you only knew how big my husband’s family was you would know what a miracle that has been too! One request we have has is to “NOT SPOIL THE HONEYMOON!”.

Thanks for reading! ~ Melynda

 

 

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Celebrating One Year…

June 22, 2016 was a day I will never forget. I was driving to work just like every other day and I took a sip of tea as I was waiting to get on I-20. In that instant I knew something was really wrong. I choked on that little swallow of tea. I could not even swallow to get any of it down. “Well that’s a fluke!” I thought. I went on and drove to work never touching that glass of tea again. My coworkers asked if I wanted to go get some breakfast and I can still remember the looks on Alice & Danielle’s face when I said “No, I’m having a little trouble swallowing.”  Danille has very expressive eyes and they were expressing alright! It was Alice who alerted Dr. Thomas who had seen me in the hospital and expressed his concern that he thought I had MG. He had even called and talked with a Neurologist. When Dr.  Thomas walked in our office he was ALL business! He ordered me to the ER! I burst out crying because I knew something was wrong and I couldn’t hide it anymore. I headed straight to the ER at the Medical College of Georgia. I had to call my husband, mother and my daughter to tell them what was going on. You see I had been hiding all of these weird things going on from my family and friends. Some of them had become too obvious to hide for example the loss of control of my right eye in the afternoons and the physical exhaustion or laziness as someone had referred to it. 🙄

I endured testing and a hospital stay for a week. That would be the first of eleven for this past year. April was my last hospital stay and I am so thankful that I can now get home infusions of IVIG every month that keeps me out of the hospital. In this year I have learned a lot about myself, my faith, my husband, my mama, my mother in law and my children. My family has a strength and resilience I had no clue existed in them. They have stood by me and helped me through every step. There have been days that it’s not been pretty and we have hit last nerves but for the most part we have learned how much we truly love each other. 

I mainly want to share what I’ve learned about myself. I will try to keep it short. 😂😂😂😂

I am stronger than I ever thought I could be. Days upon days of being in the hospital enduring needles, testing, sleepless nights, fear and so many other emotions I completely learned to rely on God, my Creator, to provide for me what I needed. I have learned to shout in my head when it wouldn’t come out in my voice! I know God is real, I have felt and heard Him time and time again when I didn’t think I would be around the next day. His still small voice guides me daily. My prayer is now that I listen and follow what He asks. It’s so easy to try to push to thoughts aside. God is the Great Physician and I know He will completely heal me in His time. I just can’t wait to see what the outcome of this journey will be! 

Don’t sweat the small stuff. This is a big one for me because of my personality. Everything has to be perfect, let me rephrase that everything used to have to be perfect. I can’t fix everything. I have learned not to worry about things that I cannot fix. My house is lived in and you are welcome to come see me whenever you feel like it. There will be dishes in the sink, shoes on the floor and a dog or two in the house. It’s life and I currently have two of the male species living with me. See my point? Tal & Adam do the best they can but let me tell you they are not house keeping specialists! Hahahaha! What a title! If you come to my home I want you to feel like you can sleep on my sofa if you want to. We will not sweat the small stuff around this camp! Ok so that might be a little fib, some days I still focus on the little things but I am getting better. 

I am loved by a bunch of people! I had no clue that so many people truly love me. A nurse is a thankless job most of the time and it never occurred to me that I made a difference to people. I have had so many people visit, bring food, send cards, call, write, send texts and ask about me that it has been overwhelming! It’s hard for me to be the sick person, I’m suppose to be the care giver. I thank God for each and every person that has reached out to me this last year! I still get all emotional when I think of how many people it has been. So, thank you for caring about little old me. It has helped to strengthen me in this literal fight for my life. 

This next one is going to shock you I just know it. I am stubborn! I am persistent! Those are my “super powers”! Yes, I said it, I have the Charles Fuller (that’s my dad by the way) hard head and I know just how to use it. It has kept me working and fighting day in and day out. I’m not exactly sure my mama and husband are glad I have it but I’m pretty proud to have it at this point! I am continuing to work 40 hours a week and drive myself. I have learned how to pace myself and deal with the new normal that is my life. At first that hard head worked against me but now it helps me persevere!

Finally, I have learned to slow down and enjoy every second of my life. I was rushing through life before I got sick. Running to work, to church, to the next stop and never taking the time to enjoy any of it. It’s crazy to think back on how much time I have wasted. I’ve learned to say “I’m sorry I just can’t do that” when I don’t have the time or energy. I have learned how to grow flowers and tend to them (I’m talking my thumb had been brownish black! Tal said I could kill an artificial plant in the past! It’s a huge deal!) It’s hard nowadays to make plans with things so uncertain, my symptoms can change in a dime but l still keep going just much slower than before. I am so thankful for that. It might not have been how I wanted it done and I might have had to step over a few extra hurdles but The Good Lord has my attention and I am thankful for everyday I have. 

There are so many life lessons this journey has shown me. Myasthenia Gravis has been a curse but it has also been a blessing. It has opened my life up to so many things that I just simply couldn’t see before me. I wouldn’t wish it on my worst enemy that’s for certain but I do wish the life lessons on each and every one of you. 

Thanks again for reading! Until next time ~Melynda

“And you shall love the LORD your God with all your heart, with all your soul, with all your mind, and with all your strength.’ This is the first commandment.”        Mark‬ ‭12:30‬ ‭NKJV‬‬

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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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