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