Thank you…

So, if you stood in the gap for me and mentioned my name in prayer to our Almighty God on Tuesday morning I thank you. It’s a long story so here it goes.

I have been doing great! So much so I’ve had major changes in my medicines. My infusions were decided to be stretched out to six weeks apart. I’ve been doing good until this weekend when I noticed I was weaker than normal and I didn’t get my treatment on time because of insurance paperwork. Monday was a holiday for me and so I rested for the most part. I cleaned my kitchen by rearranging stuff just to aggravate my husband or so he thinks. Everyone needs a little change up right? So what if the coffee pot is on the opposite counter? Tal doesn’t think so; all of his stuff should stay in the same place forever. Even the gum wrappers he leaves laying around waiting for me to pick up! You feel me?

Anyway, back to Tuesday morning; I get up tired, get dressed, head to work and while driving 70mph on the interstate this very nice person coming off the Grovetown exit while talking on their phone, never looks where they are going and runs me completely off the road. I was scared to death and proud at the same time. I held onto the steering wheel and eased back over on the road. I’m pretty sure the people behind me thought I drove for the local demolition derby. It was then that I started having some more weakness and shortness of breath. I called Tal and told him, he said you need to pull over. I said “I’m going to Aunt Mary’s meet me there.” He grumbled but agreed. So the next call was to my boss, Kathleen. Here I call to tell her I’m not feeling well and I think I’m speaking clearly but I could tell by the tone in her voice something was wrong. She yelled “pull over and call 911, I’m on the way”. Do you ever think you are saying something and you really say something different? No? Well my speech was breathy & garbled. So I tell her where I am at, hang up, pull over & call 911. I tell the operator where I’m at and think OH MY GOODNESS it’s happening again. I try talking to 911 and all I can do is breathe or struggle to breathe. Here’s the thing, normal people don’t have to think about breathing ; you just do it. Myasthenia Gravis patient’s muscles weaken with EACH breath. Imagine lifting weights, each time you feel more tired but, you have to keep lifting or you will die. Yep! The struggle was real! Breathe,breathe..breathe….breathe…………..breathe…………………………………breathe……………………………………..breathe. The thing that stinks is I can’t strengthen these muscles because more activity can cause weakness. So there I sit in my car, 911 on the phone talking to me and now I cannot move or talk, I am simply fighting to breathe. I hear the sirens, I see a man appear at the window, as he opens the door he steps back not knowing what he will see. Had it not been for the seatbelt I would have fallen out of the car. I have my medic alert bracelet but they don’t even see it. They check my blood sugar, try to check my blood pressure, they can’t find it. My pulse is through the roof, my oxygen sats are 85%. In my nurse mind I’m thinking Ok, Lord I’m ready. I hope I have done all you have asked. I hope I have reached at least one person and brought them to you. Lord, YOUR will NOT mine. I hear more sirens and then who appears in my vision? Kathleen! Who has a boss like that? I do! And can I say that ANY of my coworkers would be there too! I am truly blessed! Kathleen let them know what I have going on and gets my things for me. Here we go to the hospital for the first time in 367 days!

When I get to the hospital I get poked, prodded & wait for it…asked questions. Yep! Completely frustrating when you cannot talk. They realize who I am and then who else walks in? Lisa Ketchum, a respiratory therapist who happens to be a friend and lives in LC. She knows me and starts me on a Non-Invasive Ventilator. Relief at last! I don’t have to fight to breathe! God places the right people at the right place at just the right time!

So right now I am sitting in ICU awaiting the doctors to come in and let me go home. I know you are thinking how does she think she is going home today? Well, I got my treatment yesterday afternoon and I am walking, talking, laughing and ready to get to my house and my bed. Hopefully I will go to work tomorrow. Life goes on! MG has hills and valleys just like everything else. I refuse to let it define me or confine me. I know that my God is The Great Physician & He HAS placed the right people in the right place at the right time just for me; all I have to do is trust in Him! I absolutely trust Him! Do you?

Thank you for reading & for the prayers!

~Melynda

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Celebrating ❤️

Today most people are celebrating Valentine’s Day by going out to dinner or with flowers and chocolates; maybe even with jewelry but I chose take out pizza at home with my family. I’ve not felt good this week I have bronchitis and the cough with Myasthenia Gravis has been something! I have a coughing spell that wears me down and out! My sides hurt, my head hurts but I am breathing on my own and am independent. Last year this time I was in the hospital and came close to dying. So this year I’m celebrating life, love and how far I have come in a year.

I know a lot of you pray for me and those prayers have sustained me this far. Last year I asked The Lord for healing so He gave me what I asked for but not what I expected. 2017 was a year of spiritual healing for me. Yes, I have had many obstacles to overcome but with those obstacles came a closer deeper relationship with God. So this year I asked The Lord for healing in 2018 and He is proving Himself over and over!

Here are a few facts:

1. I am weening off the prednisone. In about a month I should be completely off.

2. I am off all medicines except the prednisone every other day & the Methotrexate I take weekly. I have literally gone from sixteen pills a day to these few pills. That’s 6 pills a week!

3. The monthly infusions are going to be stretched out to every six weeks. This IS the sixth week and I still feel good except for the bronchitis. 🙄

4. I have enough stamina to get up at 4:30-5 every morning, work 8 hours and come home to cook supper. Unless it’s Valentines Day and you treat yourself by bringing home heart shaped pizza. Lol, don’t tell my boys I did it for me. That was their special treat but I didn’t have to clean the kitchen!! Yay me! 😂

5. I have surprised my doctors with how well I am doing. I told my neurologist I want to hear the “R” word this year. That “R” word is remission. I know it is possible because God is my beginning and my end. He is ever faithful and all I have to do is trust Him. And I do whole heartedly and completely!

6. Last little fact, on February 17 it will be exactly one year since I checked out the hospital the last time. WHAT?!? I know right! A whole year!

My God is faithful, forgiving but most of all loving! He has blessed me beyond measure with a wonderful family and you my wonderful friends!

Happy Valentine’s Day!

I love you and so does an Almighty God. I pray that you know him too!

~Melynda 😘😘

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9 months

Nine months is a long time especially if you are pregnant which I am not! It’s three quarters of a year and this past weekend I celebrated nine months of being hospital free! Woo Hoo!!! Nine months I’ve had at home with my family, at work with my work family and at church with my church family. I do venture out more but this is cold and flu season so any germs would be a huge set back and I don’t want any set backs!

I’m trying not to busy myself with life but life intervenes at times and takes over! Well let me tell you in being sick I have learned that if you let it the monotony of life rule you it will! I’m refusing to let that happen. This world is NOT my home and I refuse to conform to the ways of it or let it rule my life. My family is precious to me and I plan on spending as much time as God gives me with them celebrating the little things. Today was monumental at my house. Why do you ask? My baby, excuse me I mean my son, applied to his first college today. It’s huge! He has not ever been one to express goals or plans or wants in advance. He is my fly by the seat of your pants kid. His sister on the other hand probably has a secret list of the rest of her life planned out. She’s just a smidge like her mama! Adam is Tal up one side and down the other with the exception of my eyes and blonde hair! Between the two of them they make me a little crazy somedays! 🙄

This week one of my parents best friends passed away. Time is passing quickly, too quickly! When I was a kid old people died not young people. Doc Hagerson was a person that never aged! He could make you laugh quicker than anything. He always had a smile on his face and joy in his heart! I am sad he is gone but happy that I know where he is. The thought of my parents and their friends getting older is so hard to grasp. My mom is my firecracker, “I will still whip your butt”, get up and go person. She celebrated a birthday this past weekend and said “age is just a number it don’t mean a thing”. So with that being said I’m taking a little break from social media. I want to focus more on my family and striving to be a better follower of Christ. You see all of this human junk gets in the way of that.

Monday night’s football game was a fine example. The half time show, my goodness what a controversy over the entertainment. Personally I did not like it at all! Dogs howling at the full moon are much easier to understand than the guy on the tv. However to each his own but, that type of music and getting drug down by all the controversy of Facebook comments didn’t help me get one bit closer to Jesus. If you know me you know I’m choosing Jesus over any rap, country, rock, pop and even christian singer there is. Heaven is for real and I plan on being there for eternity! I cannot call myself a Christian and be ok with where this world is headed. I’m just saying! Where are you in your walk with Christ? Are you willing to choose? I am!

I still plan on writing my blog and sharing things with you but I am refusing to be addicted to checking my Facebook everyday or getting pulled into the drama. If you need me I am here for you. I will be praying over requests that I know about. I just cannot let social media take over my life. My goodness God has given me nine months of healing and how do I choose to use it? NOT addicted to social media!

I am not perfect nor do I ever claim to be. I just know where I stand and what is important to me. I also know that if The Lord presses something on your heart you should probably choose to do what He asks. I can’t imagine trying to answer for something that I knew I shouldn’t have done and chose to do it anyway. 😞 Been there, done that and I didn’t like the guilt and frustration that followed.

Life is too precious to miss out. Hug a little more often, smile all the time, laugh at yourself (I’ve got that down pat) and love deeply. What have you got to lose? Nothing, absolutely nothing! Joy is a gift, don’t let anything rob you of it! The JOY of The Lord is my strength!

Thanks for reading and supporting me in your prayers, thoughts and kind words! Much love ~ Melynda

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2017 is in the books, bring it on 2018!

For our family 2017 has had a lot of hills and valleys. Our daughter got married, our son started his senior year in high school, we buried Tal’s Big Mama and I have fought Myasthenia Gravis with every fiber of my being. With all that being said for the highs and lows we have had, I have lived each day to the fullest. 2017 for me personally has been a time of spiritual growth. I asked for healing at the beginning of the year and little did I know God was providing for me with much more that I could have ever dreamed!

This year I learned what it means to “pray for somebody”. If I tell you I will pray for you, know that I do. I pray every day for numerous people & their issues. Sometimes if people are heavy on my heart I just pray for God’s guidance for them. Sometimes it’s specific prayers if I know what you need. And let me tell you I don’t mind praying publicly or privately God hears it all!

I’ve learned what it means to “be a witness”. Let me tell you right now; I still fail in this department! Often times I feel scolded when I do or say something wrong! I have learned that even in our worst of times how we respond IS a witness. Also let me say that when I fail it’s generally because I don’t respond like I should. Those times are a lot less than they were in 2016 but I still suffer with the whole butt overloading my mouth deal. I have to ask The Lord to forgive my failures a lot! And praise Him, He DOES!! Hallelujah!

I’ve learned patience & that my friends is a hard lesson to learn! I still struggle with it but MG has helped me to be patient with myself, my family & most of all God’s responses to my prayers. If He answered every prayer immediately we as humans would ask for everything we don’t need and nothing we do. It would be instant gratification and that is definitely NOT of God. We can’t run a race if the finish line is only steps away!

I’ve learned a whole new way of normal. I have always just done things so I don’t have to keep asking (Ladies you know what I’m talking about) and I have not allowed my husband to be a husband. I mean I have put down flooring, replaced electrical outlets, put in new countertops, toilets, etc. the whole nine yards; Now I can’t really do physical labor and it’s hard to ask for help. Here’s an example of how I let my husband be a husband. I was with my mom riding in the car and Tal calls to ask me what the error code was on the washer. “Uhm, I have no clue, you are there google it” was my response. Tal huffed as he hung up the phone, typical! 😂 About 10 minutes later he called me to tell me he had fixed the washer and that I needed to clean the filter more often. Ok so I didn’t even know the washer had a filter! I asked him how he knew and he said “I googled it!” I didn’t even know that Tal could even google or he could take the thing apart to clean it! I was so proud I called his mama to share! Tal goes grocery shopping, he washes mostly all the clothes, he sweeps, helps me in the kitchen and this is huge! I feel like we accomplish things together now even if it is just a simple chore at home. That’s how it should have been all along but nope my stubbornness robbed us of that in the past. Now we are truly a team, I’m the right hand and he’s the left! 😂😂😂 Inside joke he is left handed and I am right handed.

I am healthier now than I have been in a while. I have reduced my meds, gained strength and stamina. I can smile again. I know that statement sounds weird but MG has robbed me of being able to smile or show any kind of emotion through facial expression. A patient at work this week whom I have never met told me that she could “tell by the smile on my face” that I had the sweetest disposition. I went to my office and cried while I thanked The Good Lord for healing. It’s the little things we take for granted that I have lost to this stupid disease and that I miss the most. God is giving them back to me one at the time so I can be thankful and enjoy them again. I know this year I have had a huge healing both spiritually and physically I am grateful & thankful for BOTH! I know complete physical healing is coming!

I’ve learned to appreciate family more. Big Mama is truly missed by our family. I don’t think a day goes by that we don’t say something about her or our dads. Yes, we miss them like crazy and wish they could be with us but, I know they are in a far greater place than we could ever imagine. I mean could you imagine celebrating Jesus’ birthday face to face with Him? Wow!! I try to let everyone know I love them and I am here if they need me. Yes we’ve seen heartache and loss but what a glorious day it will be when I see Jesus and my family that is waiting there for me.

I can honestly say that 2017 was one of the best years of my life because I am in a much better place all the way around! I cannot wait to see what 2018 has in store! I feel it in my bones that it’s going to be a great year! I cannot wait to shout and praise Jesus for all 365 days of it!

Happy New Year! Thank you for your continued prayers and support!

I love each and everyone of you ~Melynda

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Here’s What I Know…

I’ve had a good bit of time to think and pray about this blog post. I’ve had several topics come and go but this one has stuck with me. Whether it has been mentioned in sermon content from my pastor, conversations with friends or in my prayer closet this much I know is true. I would rather suffer with this disease everyday for the rest of my life if it means that my family, friends and even strangers in the street can come to know Jesus through my sufferings. I can honestly say I mean that. Through this frustrating disease I have come to know Jesus – truly know Him. My relationship is stronger and purer than it has ever been. Do I fail Him still? Yes! I am human and I am full of faults but, He forgives and refines me into a better person each day. The Bible tells us we are made in His image (Genesis 1:27) and that is one thing for the life of me I can’t understand. How could God knowing me full of sin and stupidity would want to create me in His image? He did so, therefore I strive daily to be a better Christian the person He wants me to be.

I am still humbled by the prayers, love and support I get from everywhere. I know I say this all the time but I wouldn’t wish this dreaded disease on my worst enemy! However, this past Friday I did let it slip that I wished the people at my insurance company could experience what I do for one month. Then I think the decisions that they make about my healthcare would be completely different. Our world is completely screwed up! I pay for health insurance and they decided what is best for me. Not my doctor – the insurance company! They deemed some of my medical care as experimental and they are not willing to pay. I have what’s called a LRP4 Positive testing which is new, so what about my treatment is NOT experimental? Mad, I was mad on Friday at 5:30pm when I checked my mailbox. I’ve cried, fussed, cried, and prayed. Yep, got that backwards I should have prayed first but at least my focus was on God after about 10 minutes of wallowing in that letter! I have some great friends and care givers that assured me we will fight this decision together. And mind you I have not written my rebuttal letter but it’s coming and it’s going to be a good one; I just know it!

The treatment we are doing has kept me out of the hospital for 18 weeks and that’s a record for me! I’m taking Methotrexate which is an oral chemotherapeutic medicine – it’s made my hair thin out and come back curly. I have no clue what to do with it either. So if I look like I stuck my finger in a light socket when you see me just ignore the hair! The struggle is real! 😂😂

Although not having to shave my legs has been awesome! I just wish it would make those five chin hairs fall out and never return! Oh the joys of aging! 😂😂

I’m also still taking massive amounts of prednisone. I have the face of the man in the moon but oh well, this too is life and at least I’m still able to live it. I’m trying to reduce my prednisone but whenever there is a change it tends to cause the Myasthenia Gravis symptoms to act up. Today I feel like I have concrete blocks tied to each arm, each leg & my neck. It’s hard to stand up right and walk. I’m in the bed right now as I type hoping I can rest enough to go to work tomorrow. On that note, yes I do work my full time forty hour a week job. Most of the time I drive myself but occasionally I ask my chauffeur Peggy Jean (aka Mama) to take me or I catch a ride with co-workers who live near me. My work family is the best – a little over protective and hovering but at least I know they care! My Mama said she feels safe leaving me at work with them; they won’t let me get away with anything either! 😂😂

I guess enough with the rambling about me. I will close with this great hymn which rings true to me now more than ever:

When peace like a river attendeth my way;

When sorrows like sea billows roll.

What ever my lot, Thou has taught me to say:

It is well, it is well with my soul!

And it is! Like I said previously: if I have to suffer everyday of my life with Myasthenia Gravis to see YOU in heaven, bring it on! I love you that much and Christ loved you even more! He died so that He could intercede on our behalf! We can be sinless in God’s eyes because of Jesus’ sacrifice!

Much love and thanks for reading~Melynda

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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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