I’m trying to write this post and I am at a loss for what to say. This could go negative quickly and that is not my intent. This past week has been horrible on me physically and emotionally. I have not worked since February 26 and I cannot go back to work until after my follow up on March 23. Talk about not prepared. Ugh! I have fears and doubts but I know that God is Sovereign and He has me in the palm of His hand. He is completely in control; I know this because on Monday evening our world spun completely out of control.
I had not been feeling well and literally could not hold my head up for more than 10 minutes at the time. I also had the sensation that someone had their hands around my neck which made me short of breath. I took my IVIG treatment a week early which usually picks me back up but this time it did not. On Monday I had no choice but to go to the doctor. My Primary Care Doctor told me I needed to go the the ER at Augusta University which is the worst place on the planet to me. I have a friend that works there and I let him know I was coming so he could check in on me from time to time. I was short listed to the back in a room in the corner of the ER near a back door. All the doctors came in to see me and told me they were admitting me to Neuro ICU due to shortness of breath and my history of going downhill so fast. That was around 2:30 in the afternoon. We got there around 12:30. After we waited for a while I sent Tal home because I thought they would take care of me and I would be moved shortly. Wrong, absolutely the dumbest decision I have ever made in my life. I was left, checked on every hour or so in a room that was hot. Heat makes me wear down. I expressed to the nurse how hot I was and he opened the door to come back an hour later for me to only be able to utter help me. I was completely paralyzed and was struggling with everything I had to take a breath. That is the weird thing about this disease, the more you use the muscles the weaker they become so when you start out short of breath the ability to inhale gets harder with each breath. I bet right now you have taken 10-12 breathes that you haven’t even had to think about. There are days when I have to coach myself so that I am breathing steady and slow. It’s horrible.
So back to the story; Tal home; Mama home; everyone is at home. My nurse was very nice but obviously didn’t understand when I said help me that I truly needed it. He came in and out, fiddled with the computer, tried to get some medications together that were ordered, didn’t have much communication with me because I couldn’t communicate. When my friend came to check on me he realized that something wasn’t right and I needed assistance immediately. He stayed with me held my hand and told me he was there. I remember his coming at me with his knuckles on my sternum to try to get me to respond to which I simply didn’t do very well. My mind is still great, I thought to myself geeesh, this is fixing to hurt and it did but my body barely moved. Tears are the only thing that functions and they flow freely down my cheeks because I am terrified of what is happening to me. I remember hearing “what’s wrong with her”. Someone says she has a “history of myasthenia gravis” to which the reply was “I’ve not really dealt with that before”. Let me tell you as a patient those are the LAST words you want to hear when your life is on the line. I hear talking and commotion. They tell me they are going to intubated me. They tell me that I’m going to go to sleep. I wish I had stayed asleep. I awoke to people running around sticking me and talking about needing the ultra sound machine to get an IV, stripping my clothes off and all while I felt trapped inside a coffin unable to move or speak. I was not breathing myself so I feel like I was on the ventilator at this point. I remember hearing my brother’s exact words “Oh my God, she looks like my dad!” Daddy spent the last month of his life off and on a ventilator and I now know why he said no more. It’s awful. I remember praying and telling God whatever he has planned for me to keep my family safe. I prayed for Tal, Kathryn, Jaron, Adam, Mama and Marie. That they would be ok if I went home with Jesus. I asked The Lord to give them comfort and sang “There is power in the name of Jesus to break every chain, break every chain, break…every…chain…
The next day around lunch I woke up to the best sight! I saw Jamie, one of the Nurse Practitioners from Neuro ICU smiling at me. It was the best smile ever; he has one of those smiles that lights up his whole face. I was unclear of what was going on or how long I had been out but I was alive. Dr. Garcia and the Neuro ICU team came around and he told me good news and bad news. “My dear friend” he started “we have to make sure you can breath on your own before we can remove the tube”. I can be an anxious person and let me tell you my anxiety was on high alert. I had my phone and text them asked if they could give me something to calm me. I was hot and felt like I was buried in a box with just my head out. He told me he would return around 4:30 to which my restrained hands did the two finger my eyes to his eyes. He laughed and promised me he would be back.
The next few hours were tough. Tal had gone home to get sleep when Mama got back up there. Our preacher and his wife came and I text my Mama and asked her to tell him to pray for my anxiety that I would lay there restrained with these tubes in my throat and be comfortable until the time was up. When Jerry & Debra walked in the immediately prayed. They stayed there with me and my mom until this whole ordeal was over. The nurse I had was fabulous I’m not sure she knew how to take me. She asked my mama if I was chatty and I am pretty sure you know what Mama’s response was. Ha!
Dr. Garcia didn’t fail me, he came back before the given time. Y’all I am not lying when I say those were the longest couple of hours in my life and the hardest I had ever worked to remain calm and composed. I prayed for strength and The Lord came through once again! He is ever faithful and I cannot express that enough. It’s why I am struggling with worry and fear about stuff I cannot control. I know beyond a shadow of a doubt He will provide for us. It makes me mad at myself for feeling like this.
My doctor intentionally kept me out of work because he says I push myself too much. I do, I want to be the best wife, mom, daughter, co-worker, niece, cousin, friend, etc that I can be but I have got to change that focus. I have two and half weeks to work on changing that mindset. I want to be the best follower of Christ I can be. I want to serve THE Risen Savior. I want to be the hands and feet of Jesus while I am still on this earth. I want to practice what I plan to do for eternity…worship an Almighty God!
Please continue to pray for me and my family. As much as I went through they had to see me like that: helpless, lifeless and unresponsive. I know God’s plan is greater than my dreams I just hope I am smart enough to realize the path He has set and follow it obediently even when I think I know best.
Thanks for reading. Thank you for your prayers. I apologize in advance for grammatical errors, it’s 2am and Kathryn is asleep. She is sure to point them out to me later. Haha!
Much love ~ Melynda