Happy Birthday Sweetheart! 

I usually write on my blog about how I am doing but today it’s reserved for that special someone in my life. He has no clue how much I love him even though I tell him everyday. So here it goes…

Tal,

Never in my wildest dreams did I think we would be married almost 26 years with two beautiful children and a love that has outlasted a lot. In the last 3 years we have had so much heartache, the loss of both of our dads & my illness. I never dreamed we would be dealt some of the things we have been through so young. As I type this I imagine you know I have tears running down my cheeks because I am missing you so deeply it hurts. It’s been a week – an entire week that I have not been home with you. These tears make me love you that much more because I know you miss me that much too.  I see it in your eyes when you have been here at the hospital. 

There are not words sufficient enough to tell you everything I feel for you.  I am proud to be your wife. I am honored to be the mother of your children. I have such deep gratitude for you because you have always and are such a wonderful provider. I am happy because you always make me giggle, ok so maybe not always make giggle but at least you realize when you are treading on thin ice – most of the time. I’m sorry you have to deal with this dreadful disease. I am overjoyed by all we have accomplished together. Most of all, I am so thankful you chose me and stand by me always. I have seen you do things in the past 4 months I would have never dreamed you would do. I know life with me hasn’t been easy but I thank you for being here & loving me. I know your birthday will start at home alone (I’m sure Adam will not wake up to tell you) but with prayers it will end up at home together! With everything we’ve been through I am also thankful I am here to wish you a very Happy 49th Birthday! 

I love you Tal Poss forever and always! 

Now for me to share a few pictures which I know will just tickle you because you hate having them made! 😂😂

We’ve come a long way baby but I am so glad we’ve come that long way together. 😘😘

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My name is Jane Doe…

I’m back in the hospital after yet another Myasthenia “crisis” and not feeling like myself is a good way to describe it. It’s my fourth day here and everyday starts the same way. I’m at a teaching hospital so when the doctor makes his rounds he is followed by a bunch of other doctors and folks. They ask the same questions. What is your name? Where are you at? Who is President? Then it’s followed by follow my finger, squeeze my hands and a bunch of other tests that show my muscle strength. Most of them are so simple but someone with Myasthenia Gravis having issues can’t continue the movements or coordinate the movements. When I came in the ER I could not speak or move. I blinked to respond to questions in the ER. My mind was on point but my body was not! Slowly but surely over the course of these four days my body is coming back into the game thanks to the help of a treatment called Plasmaphoresis. It’s a process that comes with some rough step prior to getting it. The first step is a Plasmaphoresis catheter – it goes in the neck. It’s lovely tubes that stick out of my neck and to get it put in is not fun. I have had to go down to IR or Interventional Radiology where they insert this hard catheter and sew it in place. Have you wiggled yet? Well that’s the last thing you can do when they are putting it in. I told my mom I could have made a diamond out of a charcoal brickette! Whew! I was glad when it was over and me in my best southern fashion hollered “Thank you” as they wheeled me away. Really? Thank you for stabbing me in the neck?  These folks probably think I’m crazy! Who isn’t nowadays? 

So now that I have my lovely neck jewelry I’m good except for the tip of the catheter is too close to my heart and sends my heart rate over 160 for 30 minutes twice! The only thing that I was disappointed in was the fact I didn’t have my Fitbit on so it would think I was exercising like a mad woman and one up my co-workers!  Hahahaha! I did feel like poop after it was over but I knew I would be fine. To resolve this issue I had to have a surgeon come in and cut the stitches, pull the catheter back and restitch it. As my brother likes to tell anyone who will listen I’m “mean” so I did it without any numbing medicine.  Yet another moment I could have had a diamond! 

The Plasmaphoresis is a very interesting process. The catheter has two tubes one for outgoing and one for incoming. The process involves a machine that is similar to dialysis but it draws the blood off, spins it down, takes the plasma off, adds new plasma and puts it back. All I have to do is sit there and run my mouth which comes so naturally for me. Sandy is my Plasmaphoresis nurse and we are so much alike. We laugh and talk and talk and laugh. The 120 minutes of treatment fly by. Afterwards on the other hand my body rebels with nausea and  chills. It’s not fun but once it passes I feel like a new woman. Today the doctors came by immediately after Plasmaphoresis and decided they would come back. It was then my quick wit jumped into play and I told them my name was Jane Doe right now. They all laughed. I told them they could come when Melynda was back. Yeah, they think I’m crazy but that’s ok, they laugh at my jokes! 

Myasthenia Gravis has taken over my life these past 4 months and run rampant with every aspect of it, except one. I don’t care what I have going on physically or mentally because I know spiritually Jesus Christ knows my name and has a place waiting for me when this earthly life is over. It doesn’t matter if it is tonight, next month or 50 years from now I’m not going down without a fight and a Hallelujah!  Today after my nausea subsided I went to my personal prayer closet (aka bathroom) and prayed. A simple prayer actually, one that thanked God for my caregivers, thanked Him for his mercy & grace and praised Him for being my beginning and my end. When it comes down to it I know where I’m going and I know my name will not be Jane Doe when I get there. I will be child of the Most High! I will be praising The King of Kings and Lord of Lords but until then I am a weary soldier on a journey. A journey God will continue to hold my hand through. I am grateful I am gaining strength each day and things seem to be working. My prayer is that they continue to improve and the most effective treatment is found. It doesn’t matter what I have to go through here on this earth; it’s knowing where I will be for eternity that gives me peace. 

Thank you again for all the prayers and get well wishes they mean more that words can express. I’m sorry if I have missed your calls or texts but there has been a lot going on this trip. I’ve tried to keep up with everything but haven’t always succeeded. 

Thanks again! ~Melynda

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Favored…

This morning in church we had a wonderful State Missionary that spoke. One sentence in his sermon stood out to me. He stated that when asking for his son in law’s specific prayer request. His son in law asked for God’s favor to be shown to him. What a request! God’s favor, not mans!  The dictionary states that the word favor used as an adjective it has  these definitions: regarded or treated with preference or partiality; enjoying special advantages; privileged. 

Oh MY! I want to be favored by God! Can you imagine being treated by our creator with partiality? OH, but if you are his child you are favored! You heard the call and answered for a calling far greater than anything on this earth. You are His child! You are HIGHLY FAVORED! But here is the next thing to ponder. You are favored but has God shown you his favor? When favored is used at a noun it means the state of being approved or held in regard. Just because you are a Christian are you are shown God’s favor? Are you approved by God in all you do? Am I making sense? I am a Mama but it doesn’t mean I am a good one. Just ask my kids some days. They think I am mean and unreasonable at times. I show them favor by treating them with preference because they are my kids but I don’t always approve of their behavior. 

God loves us enough to let us learn and grow. He chooses to gently guide us through the Holy Spirit and it’s up to us to heed the call. Part of my learning process has been through my trials of health issues this summer. Myasthenia Gravis is relentless. Minute by minute it attacks and reminds me it’s there. Today at church I plunged a stopped up toilet and you would have thought I built a 5000 square foot house by hand myself!  Simple things cause great issues especially if I use the same muscles repeatedly. Pure craziness!  Through prayer warriors on my behalf God has bestowed favor on  me and has shown me His favor too. He has shown me that my help comes from The Lord. He has shown me that He is my portion and all I need! Two years ago I needed things in this world to feel special. I’ve learned since then that is a lie of Satan!  Things of this world come and go but God is Everlasting, Eternal, Almighty, the Alpha & Omega! He is my reason to live!  And that is my plan whether healthy or ill, up or down, I can’t stand out in this world unless I am highly favored and shown favor by an Almighty God! My plans should be His plans. My rules should be His rules. My ways should be His ways. 

The speaker said one other thing. Revival starts in you! So with my new prayer for God to show favor I also want a revival; in me.  He also mentioned this song and how true the lyrics are: It only takes a spark to get a fire going and soon all those around can warm up in its glowing. That’s how it is with God’s love once you’ve experienced it. You’ll spread His love to everyone you want to pass it on. Well folks; I WANT TO PASS IT ON!! I want to be that spark. This world needs revival and it can start in me or you! ~Melynda

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Blessed Beyond Measure

In my own little world I am battling a vicious disease that I would easily fall prey to and allow it to consume my life. I choose not to and this past week has reminded me yet again how precious life is. And in our lifetime it is what WE choose to make it. Good or bad. Happy or sad. This past week a family lost a husband, dad, brother, son, uncle, grandpa, cousin and I lost a friend. A lifetime friend and classmate to an unexpected and sudden death at age 47. Shock is the best way to describe how I feel, I cannot imagine the grief of his wife, children, grandchildren, mom, grandma, brothers, sister & close friends. But do you know that there is peace in knowing he is with Jesus now? He is whole, no pain, no worries, worshipping Jesus face to face! What a day that will be when my Jesus I shall see.  My friend and classmate Clifford is experiencing something we can only dream of. 

At the funeral home tonight I got to tell his oldest son that since 8th grade when I met his dad; Clifford was Clifford no matter where he went. He was the same laid back, tender hearted, gentle, loving guy everywhere you saw him and even if 15 years passed it did not matter. In school I was the runt of my class; If you could see me now you would doubt that statement but I was. Short, scrawny, long haired, glasses and braces…a real look the other way kinda gal 😂😂 and I forgot the part where I was kinda quiet. (I know hard to believe that too!) Being small and quiet made it easy to be picked on or pushed around but Clifford always stood up for the underdog and there were plenty times I truly put myself in that category. He also could sing like an angel. I can remember several bands through the years that he was in. I imagine the heavenly choir sounding that much sweeter tonight. 

In praying for his family this scripture came to mind. It’s titled The Beatitudes and Jesus actually spoke these words:

“And he opened his mouth and taught them, saying: “Blessed are the poor in spirit, for theirs is the kingdom of heaven. “Blessed are those who mourn, for they shall be comforted. “Blessed are the meek, for they shall inherit the earth. “Blessed are those who hunger and thirst for righteousness, for they shall be satisfied. “Blessed are the merciful, for they shall receive mercy. “Blessed are the pure in heart, for they shall see God. “Blessed are the peacemakers, for they shall be called sons of God. “Blessed are those who are persecuted for righteousness’ sake, for theirs is the kingdom of heaven. “Blessed are you when others revile you and persecute you and utter all kinds of evil against you falsely on my account. Rejoice and be glad, for your reward is great in heaven, for so they persecuted the prophets who were before you.”    Matthew‬ ‭5:2-12‬ ‭

Clifford was pure in heart, a peace maker, merciful and his reward is great! My prayer is that his family will fully know what a great man Clifford was, how many people loved him and how many lives he touched just by being himself. Until we meet again, Godspeed my friend!

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Renewed Strength! 

This morning, as our diva dog Lola stirred, I knew I had to get up and let her out to take care of business. For the past 3 1/2 weeks this has been my test. When I stand will I have stability first thing in the morning? You see mornings are suppose to be my best time because my batteries are charged after prolonged rest. Eight hours of sleep should do the trick for most people but with Myasthenia Gravis the more sleep the higher the charge for me. I am not sure if this is different for other MGers or “snowflake warriors” as we have been named. 

This morning I stood up and actually did not feel like my knees would buckle. I grinned, and walked to the living room, let Lola out and my dear sweet husband was still sleeping in the same spot on the sofa with the TV still going with the exception that one of my kids turned the volume down really low. I should clarify – REeeeaaaaaalllly low! Hahahaha! Probably so we could all sleep last night. Do you feel me? My husband has worked around heavy equipment his entire adult like and he can’t hear thunder! I go fix me a cup of coffee, let the dog back in and he jumps up! ” Where did you come from?” He said.”Uhm, I let the Lola out and fixed me a cup of coffee, I’ve been right here.” I replied. Then as serious as can be he said “You are like a ninja!”  Right then I bust out laughing because I realized he was still half asleep. My laughing  made him look at me like what are you laughing at? So there were two things that started my day off perfectly! You see today I have renewed strength. Not only in my legs but in my family. These last two weeks of a hospital stay and then me not bouncing back have been a huge stress on us. It’s the stuff that makes you wonder if this marriage is strong enough. Will he stay with me? He doesn’t have to, the world tells us to just throw it away, you can find another. But, my sweet Tal loves me like Jesus. He loves me  even though I am imperfect, he loves me even though I’m sick & he meant his vows when he said he loves me until death do us part. Guess what? I meant them too! Has it been tough? Shoot yeah! I am a mean hormonal heifer at times and he can be as stubborn as a mule but, we are a pair. His mom even told me that no man she know has ever loved a woman like Tal loves me. I agreed. He probably has no clue he loves me like Jesus does. He just knows he love me. 

So with my renewed strength this morning I am thankful. Thankful for stronger legs, (don’t think I could go to the grocery store or anything but, they are stronger) a strong family and a strong faith. Faith that gives me a peace that all will be fine. It will be in God’s time, not mine. As humans we see a clock but God sees our growth. I would rather live my life serving a God that some call fake than die and find out He is real!  I know He is real! As the song states: I’ve seen it in the lightening, heard it in the thunder and felt it in the rain. My Lord is near me all the time.  My Lord is near me all the time. 

My prayer for you today is that in this time of hurricane weather, election hysteria & A dysfunctional America you can find a renewed strength in Jesus. He can hear your cry and answer your call if you will let Him.

“I love those who love me, and those who seek me diligently find me.”   ‭‭Proverbs‬ ‭8:17‬‭(ESV)

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Tears…

“I cry out to God Most High, to God who fulfills his purpose for me.”‭‭Psalms‬ ‭57:2‬ ‭ESV‬‬

I have mostly kept it all together: for myself, for my husband, for my kids, for my mom and those around me. I know God has a plan, there is no doubt in that! I have prayed and held myself strong and steady until Monday. Last week I spent a week in the hospital getting 5 days of Immunoglobilun Therapy. This was IV and because my pulse & blood pressure runs extremely low it puts me into the ICU unit. There is nothing more fun than to just be snoozing along and the nurses come into the room and call your name to make sure you are ok (I thought only my husband did this to randomly aggravate me) & each time it would be because my heart rate or blood pressure would drop.  Genetics I guess is where I get it. My mom’s dad had to have a pacemaker because his heart rate was so slow. He also walked like a snail and my grandma used to tell him he was going to “slow himself to death.”  😂😂😂

Anyway, I have been home for 4 days and I am exhausted. I don’t feel good, my legs feel like they weigh a ton and so does my neck. I have had headaches off and on (I am not a headache person-I just don’t have them) and my breath is short. What in the world is happening to me? I can’t go to work because I can’t escape the bed. This is not me at all!! My doctor called me back on Monday to tell me some news. I found it devastating and questioned why me? I know why me-if anything odd or unique is going to happen on this earth I WILL be envolved in it. I am a freak of nature! 😳 If you read anything about Myasthenia Gravis there are several ways to diagnose it. Single fiber EMG that stimulates the nerve -it’s like touching an electric fence over & over & over; NO FUN! An ice pack test which was discovered by the doctors at MCG, my right eye has ptosis or drooping of the eyelid, place an ice pack on it for a minute and that bad boy opens right on up. When they did that test I immediately decided I needed an insulated, bedazzled purse by January 2017 for my daughter’s wedding! The pictures will be awesome if both of my eyes are open! Another test is a MRI to diagnose a tumor on the thalamus gland in the chest that will also cause MG – I don’t have a tumor. Lastly, they did blood work and check for two specific antibodies that will be positive with MG. Occasionally they have found somepeople are negative on those two labs. The Medical College has a grant to study those patients. They are simply testing the blood of those patients for another antibody cause LRP-4 to see if its positive. Do you see where I am going with this? Yes, I am the freaky kid. I tested double negative for the usual blood work but by golly I tested positive for the oddball, we got a grant to study this antibody , blood work. Monday my doctor called to tell me and with that conversation he said we may have to start over because what we are doing doesn’t seem to be working. Cue. The. Tears…

I FEEL like it doesn’t seem to be working. I FEEL like I have taken two steps forward and TWO steps back. The only thing I see is my hair falling out, my face like a cabbage patch kid and my clothes struggling to wrap around all this luciousness. (Is that even a word?) I don’t want to start over! I want to be fixed. I want to go back to work. I want my husband to look at me without worry. I want to take care of my family and not have them taking care of me. I was over all this mess! I’ve kept a lot of this from our children because I don’t want them to worry about me. I don’t want to upset their apple cart the way mine has been. Heck my apple cart has been stripped like a BMW in downtown ATL! But with all of the craziness we decided to just sit them down and be frank with them. Twice we have been to the ER and my breathing has been close to she needs a ventilator stage. Too close for me! We all cried because this disease is a game changer. A huge game changer but through it all I know God has a plan and I told them that! 

How do I know God has a plan? I know because he is a Sovereign God. If you look up sovereign in the dictionary it states “possessing supreme or ultimate power”. He’s got the power. The power to cure, the power to heal, the power to break every chain that binds us. He had the power to speak the universe into place. He can heal me. He has got this. I have got to learn to let him!!  Did you get that last statement? I, Melynda Fuller Poss, have got to LET him! I can’t fix this but I know who can! Yeah, He smacked me with that little lesson after having my mully grubs Monday night/Tuesday morning. 

Today I had my appointment with the doctor. We are changing up medicines again but with renewed hope. The IVIg or immunoglobulin therapy has a peak time – I didn’t know that – it’s in the next few days. Praise Jesus! I could pick up in the next few days and start a new  medicine.  My generalized weakness could improve! Nothing feels any worse than your legs feeling like your knees will buckle at any moment or your head feeling like you can’t hold it up. Wait, I take that back this headache deal is ridiculous! I completely sympathize for anyone with headaches! So with renewed hope after talking to the doctor I know God has a plan and it is perfect. Perfectly made for me. What it is?  I don’t know. How it will end? I don’t know. How will I will choose to handle things? I don’t know.  Who is in control? That, I do know! The One True, Sovreign God, Creator of heaven & earth, The Alpha & Omega, MY beginning and my end that’s who! 

He placed me at a facility that just received grant money to study blood work on patients with Anti-LRP4 autoantibodies in AChR- and MuSK-antibody-negative myasthenia gravis. And ladies & gentlemen-That is ME! Who does that? An all knowing, all powerful, loving God that’s who!  I have said it before sickness is of the devil but I claim healing in the Name of Jesus! I can’t wait to see the outcome of this journey. I hope y’all can bear with me! Thank you for your continued support and prayers. They have certainly sustained me thus far! 

Now to apologize – if I haven’t text you or called you back, please know that my trip to the doctor wore me out. I didn’t even eat supper until 10:30 because I collapsed when I got home. I didn’t have the strength to chew my supper when I initially got home that’s how weak I was. I have more tests to do and new medicine to adapt to but we will trudge along on our journey hopefully with a smile rather than a tear. May God bless you on whatever journey you may be on. ~Melynda 

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There’s Nothing Like Family…

We all have family, some you claim – some you claim not to know. 😂😂 My dad was the third in line of seven kids growing up. He was the first sibling to pass away and it was hard on everyone. The siblings, cousins, the whole clan. Being a daddy’s girl it was exceptionally tough on me but I knew first, that Daddy knew Jesus as his Lord & Savior and second, I knew that there was not one second of life worth living on this earth for him. He was ready, he told us such and he wanted to make sure we would be ok. In fact I told him I would take care of Mama but I couldn’t promise not to beat the crap out of my little brother. He said “sounds good” – I am giggling in the quiet of my hospital room now thinking about the perplexed look on his face when I said it so seriously and then paused before busting out laughing. My dad was the comedian in the crowd. Always had something funny to say until you hit that button, you know THE BUTTON that when you were young you immediately regretted hitting. Anyway another time for those stories! 

On Monday, after I had determined that I needed to go to the ER, my mom got the call that my dad’s oldest sister died in the night. It was expected, she was in the hospital and had previously chosen not to have drastic measures to save her life. I was devastated but knew that she was better off. You see my Aunt Brenda was diagnosed with Parkinson’s disease in her 40’s. she has been completely dependent on someone to care for her these last 10 years or so. She was a quiet, giggly, meek, humble, kind and loving woman. When I got sick she called me to see what she could do for me like she could climb out of her bed and cook me a meal! That was her! She fought breast cancer and won, she buried a daughter and survived the grief, this chick had brain surgery while AWAKE to calm the tremors from Parkinson’s like a champ. She was a battle warrior from a bed. Not only that she was the epitome of a Proverbs 31 woman. This describes Aunt Brenda to a T: “An excellent wife who can find? She is far more precious than jewels. The heart of her husband trusts in her, and he will have no lack of gain. She does him good, and not harm, all the days of her life. She seeks wool and flax, and works with willing hands. She is like the ships of the merchant; she brings her food from afar. She rises while it is yet night and provides food for her household and portions for her maidens. She considers a field and buys it; with the fruit of her hands she plants a vineyard. She dresses herself with strength and makes her arms strong. She perceives that her merchandise is profitable. Her lamp does not go out at night. She puts her hands to the distaff, and her hands hold the spindle. She opens her hand to the poor and reaches out her hands to the needy. She is not afraid of snow for her household, for all her household are clothed in scarlet. She makes bed coverings for herself; her clothing is fine linen and purple. Her husband is known in the gates when he sits among the elders of the land. She makes linen garments and sells them; she delivers sashes to the merchant. Strength and dignity are her clothing, and she laughs at the time to come. She opens her mouth with wisdom, and the teaching of kindness is on her tongue. She looks well to the ways of her household and does not eat the bread of idleness. Her children rise up and call her blessed; her husband also, and he praises her: “Many women have done excellently, but you surpass them all.” Charm is deceitful, and beauty is vain, but a woman who fears the Lord is to be praised. Give her of the fruit of her hands, and let her works praise her in the gates.”

‭‭Proverbs‬ ‭31:10-31‬ ‭ESV‬‬

Yep! Aunt Brenda was a true gem. She buried my uncle a little over a month ago who was her primary care giver. When I saw her after he died I climbed up in her bed and laid my head on her chest so I could hold her but you know what she did? She held me instead. She enveloped me in her and arms and hugged me just like my grandma used to. For a moment I was a kid getting a good old grandma hug until (record scratch sound here) my Mama said “what are you doing?” Aunt Brenda & I giggled. I said “I’m getting some Aunt Brenda loving”. Mama said “Well Brenda I love you but I’m not crawling up in the bed with you!”  We all laughed. I knew then her heart was breaking and grieving. There was no doubt the love my Aunt Brenda & Uncle Marion had for each other. They were still giddy about each other. There were several times I visited with them I told them they had to stop all that foolishness in front of me or I was going to be sick. They laughed at me and kissed and let’s not forget the giant belly laugh when they looked at my facial expression. Yesterday they laid Aunt Brenda in the ground beside her beloved and I sat at the hospital grieving for our family. I wish I could have been there. Her two sons Darrell & Michael have buried both parents in a little over a month & that’s so not fair but in both cases they too had no life on this earth worth living. I cried most of the morning thinking about my family. My cousin Darrell the least sappy person I know text me early to check on me and the tears just flowed. I love my family. In all our crazy, had seen you in 6 months but it doesn’t matter,  you pinched me last I owe you but I love you dysfunction – I love my family! Darrell said it best – in the end we have each other. And we do! After the funeral I had company. Not just a little but A LOT OF COMPANY! We laughed, got teary and laughed some more. Aunt Brenda would have loved it! Heck, I loved it! I’m sure she was smiling down from heaven saying “Look a there Marion & Charles – we did good.  My grandparents were probably right there too smiling from ear to ear. 

I am a lucky woman because it’s not like that on just one side of my family – the other side is the same way and so is my husband’s. I am surrounded by people who love me and that makes the fight worth fighting! Thanks for the prayers! I hope this hospital stay is coming to a close and we are moving forward. ~ Melynda

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It’s all still new…

I was diagnosed June 22, 2016 with Myasthenia Gravis. A disease I remembered the name of from nursing school. I graduated in 1990 so I have had to do a lot f digging and reading and question asking to figure out what to expect. With that being said, the best people to get information from are those that have it & there are not a lot of “snowflakes” as they have been labeled around me but thank goodness for Facebook because I don’t feel like I am alone in this fight. Yesterday I woke up to leg weakness. Not just my average leg weakness but when I stood to get out of bed I wasn’t sure I could make the 15 steps to the shower. I trudged on but couldn’t pick my foot up high enough to step out of the shower. Strange was my first thought, then what in the world is happening? I went to dry my hair in which I do the whole flip it over, blow it dry, flip it back, blow the rest dry. I couldn’t flip back over very easily-  Ok, now this is new. It took me 1 hour and 45 minutes to do a 40 minute routine. Now I felt like  couldn’t hardly walk. I was also very nauseated. Since it’s all new to me I have to decide what to do because going to see my PCM is not that simple. I decided I needed to either go to the ER or call my Neurologist. I can’t just take something for nausea and go back to bed. I have literally been in bed all weekend with the exception of maybe 12 hours total: So off to the ER I go. Sure glad I made it because, by the time we took the hour drive to get there I couldn’t walk on my own and my breathing was effected. Who would have thought some weakness and nausea started it? My body works in a totally different way now and I have to figure out the signs. So here I sit in ICU at AUHealth getting the best care from the best group of nurses around. They know their stuff and are compassionate toward folks with MG. They treat folks from all around so they know and are a wealth of information for me. It’s kind of like a homecoming reunion! 😂😂

Being a Christian is the exact same way, once Christ has come into our lives we are not instantly fixed. Our sin is embedded in us and it is our journey to a closer relationship with Him that we come to see the signs and symptoms of that sin. We work to heal it out of our lives. Do we always get it right the first time? I don’t, that is for sure but, I do realize it. I also have a wonderful church family that helps me to see it and fix it. I have a wonderful caring pastor that preaches it. His sermons are not the feel good, life is always roses and rainbows but, learning, teaching biblical sermons. For that I am thankful and have learned so much!! Those “older folks” at church that some people don’t get tot know well  ours are the caring, praying, God-fearers that you can learn from and love on – mine also love harder than any others. It’s also not just the ones at my church either. There are other churches in our community that are praying for me and sending me cards of encouragement.  Nothing is a pick me up like knowing others are praying for you. It’s easy to get discouraged in any situation but remember it’s all a learning process. I’m ever thankful for the people God has placed around me. They make me a better person. I know some people don’t think you need to go to church to be a Christian but I absolutely do not feel that way. How do you grow and learn as a Christian especially if you are hanging with worldly people at work during the week? It’s easy to get your light blown out by the world. I encourage you to find a church home. Get to know a small group of people you have something in common with. A church that has outreach so you can know the excitement of seeing a new Christian grow and learn from you and your mistakes. God doesn’t allow us to go through tests without allowing us to learn and in turn we can share with others that have the same struggles. 

To God be the glory for my current hospital stay. Thank you Lord for giving me the knowledge to know where I needed to be and what I needed to do. Have a great day wherever you are! I am right here in ICU – talking and praying for these sweet caregivers one by one. 

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Side Effects

So with Myasthnia Gravis comes medicine – lots and lots of medicine. Here ya go!

Yep! So much medicine I have to keep it organized! This was my dad’s medicine organizer. Who would have ever thought I would need it so soon. One pill a day and one pill three times a week turned into 14 pills throughout the day seemingly overnight! With medicine comes side effects. Being a nurse I do “nursy” things like read all of the information that comes with the medicine. It can be scary as clowns when you think about it but I need to determine what is my body’s normal and what could be side effects. I will not lie – this has been and still is a difficult path I am on! My muscles and nervous system are effected. Praise God it’s more muscle because I don’t have pain – most of the time. Muscle spasms and or cramps are the absolute worst! And lucky me they are a side effect of the medicine I take to help the receptors get the message to the muscle. I only take this pill every 3 hours. Every 4 hours was not working for me so it was increased. I have tried everything. Bananas, orange juic, extra hydration and nothing seems to stop these eye opening muscle cramps/spasms. When I say eye opening it’s the “I’m dead to the world asleep” eye opening pain. It doesn’t last long 5-6 minutes maybe but my goodness while it’s here -jiminy crickets!!?!?!? And I know there is possibly one person who I love dearly that is reading this – yes I even drank pickle juice! Disgusting but I have been desperate! Sometimes the side effects are just about as bad as the disease the medicine is treating!

With all that being said – as a Christian we have horrific side effects of our sin. As it states in John 17:16 “They (believers) are not of this world, just as I am not of this world.” Our problem is that we live in this world with sin running wild and people not being able to see the truth. Perception is cloudy. Causes that people seem passionate about are mistrued with violence and hate because of people like me. People who have sat idly by doing my church thing, raising my family, working, playing the part of a Christian. What if I had been sharing Jesus Christ with everyone I have come in contact with? Would the world be a different place? What if I had had zest and zeal for Jesus 20 years ago? 15 years ago? How many people did I turn off to Jesus because I was worldly Monday through Friday? How many of these people that are violently rioting have been turned off to Jesus because of something they witnessed a “Christian” doing? Eyes are upon us all the time watching everything we do! Do you give 100% at work or are just punching a clock to get paid? Are you giving of your times and talent? God asks for 10%. If we are to give 10% of our time that’s 2.4 hours a day not a week! I’m not writing this to judge anyone. I AM JUST AS GUILTY as anyone else. I let this ungodly world get into my life and when that happens God gets put on the back burner. How have I effected my husband, my children, my friends? Thank goodness I serve a forgiving God! With sin comes side effects – it’s obvious from the news lately that the side effects are far worse than I could ever imagine in my life time. 

Here’s a challenge: instead of saying “Come quickly Lord & save us from ourselves” try this:

“Go therefore and make disciples of all nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit, teaching them to observe all that I have commanded you. And behold, I am with you always, to the end of the age.” Matthew‬ ‭28:19-20‬ ‭ESV

Jesus Christ himself spoke these words. I think it’s high time I listened and obeyed! How about you? 

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The Battle…

As I sit to write in my blog I am perplexed by this disease process. Myasthenia Gravis is a complicated, non-forgiving, untimely, crazy, unfair disease. The symptoms come and go, mostly at the most inopportune times! Today is a prime example – Adam had a hair cut appointment at 9 am, had a few stops to make – come home.  What do I do? I leave my walker at home, I only have just a few places to run in and they all involved a buggy or letting Adam run in himself.  So here we go-off to Augusta! Haircut – in process when my husband calls to let me know they have transported his 93 year old grandmother (she is mine to after 25 years!) to the ER. He is at work 45 miles away & his mom is with her. I told him we would go by to check on them. Haircut finished – heading to ER. Well let me tell you there is no close parking to the door at Doctors Hospital ER that is for certain! When we finally get into the ER we were told that only 2 could go back. I send Adam in so I could rest before having to walk any farther. How crazy does that seem? I am 46 YEARS OLD and cannot even walk into the ER without resting. My legs feel like putty at this point. I go in check on Big Mama, who had just had blood work that was not back. We did not stay long because, now thanks to MG, I have a “compromised immune system” and should not be in places like an ER with sick people! Big Mama comes first, plain and simple – totally worth the risk! We leave to go run errands while we wait on the labs because the last place I need to be is in the ER waiting room! Back to walking we go, arm in arm with Adam bless his heart! He is so good about helping me when I know the last thing he wants people to see is his mama hanging on his arm.  Makes me cry just thinking about what my family sacrifices to make my life as normal as can be.

We run our errands to find out that out washing machine is deceased and I now need to search for a new one.  Que the dramatic music. I do not want to go looking for a washer but what are you suppose to do with that kind of news? You HAVE to wash clothes and the laundromat is not a task that I can physically do right now. It takes all my strength to wash, dry, fold & put away 1, that’s right ONE load of clothes at the time.  I have to rest in between – so not fair! By the time I go to head home with a washer loaded in the back of my truck I am beyond exhausted. Thank goodness Adam has his license and drove us the 45 minute drive home. I slept, completely shut down, I don’t remember the ride or anything. Completely crazy how I am physically kaput and I cannot stop it – my body literally stops. There is no fighting to stay awake, no coffee to assist, no exercise to pump up the heart – nothing I can do to fight it and it stinks!

My Saturday has been exhausting and my washer is still not hooked up! You may laugh but 6 months ago, I would have had that bad boy hooked up and running before anyone else had gotten home. Now, thanks to Myasthenia Gravis, I am up trying to figure out what I could have done different to give me the energy to hook up the washer by myself. Sometimes I just get ticked off for having such a vicious life altering disease. Then I sit back and think I could be completely incapacitated and for that I am thankful!

There is always a silver lining to every situation. We tend to get caught up in ourselves and our little corner of the world.  The big picture never tends to cross our minds because we have become a self centered, self focused society. Take a moment and look at what you have and what someone else may not have. We look at what others have and want that. The person that my have the nice new car & fancy house could be lonely and wishing they were you with the family to hold on to. You never know what others are facing.

This week I have been listening the English Standard Version of the Bible on CD. The chapters I have been listening to are 1 & 2 Kings and 1 Chronicles while riding to work in my car each morning. That’s my uninterrupted time with The Lord. It may sound crazy but I have gotten a lot our of listening to someone read the Bible. To me those Old Testament books have been parts of the Bible that are hard to read because they have the “begat” sections in them that give the genealogy lessons. But something stuck out to me this week that I have continued to ponder over. Throughout these sections of the Bible it has had two phrases that made the hairs on the back of my neck stand up. Those phrases are – he “was evil in the sight of the Lord” or it labeled them as a “mighty warrior”. Knowing that The Lord saw me as evil in his sight just makes my stomach ache! I cannot fathom that statement but after much thought, WE ARE unless we are saved my the mighty blood of Jesus Christ. God cannot see anything that we do in our earthly bodies as good. We are sin, plain and simple – ugly, horrid sin.  Without His grace and mercy we are nothing. Have you thought about which God sees you as? I am thankful for His mercy and that I can be a MIGHTY WARRIOR for the kingdom of God! I can also be a mighty warrior in this fight with myasthenia gravis – because it continues to be a daily battle too! Do I always win each battle – absolutely not, but I have the KING OF KINGS & LORD OF LORDS in it with me! Where I fail –  he REIGNS!!

Again, this is my blog, I am not a biblical scholar – just an everyday Christian struggling with worldly issues and putting my thoughts out there.  I am trying to keep it real because if you see me and ask me how I am I will tell you “I’m fine”or “I’m taking it one day at the time.” I will probably never really tell anyone how I feel. I have had a hard time admitting I can’t do it all. That is not how I thought I was wired – MG has thrown me a curve ball and I am continuing to swing!

Thanks for reading!

 

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