At the age of 36, I was diagnosed with ALS, amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. What started as a page on Facebook, eventually developed into this blog, at my daughter’s request.
Now, 10 years later, I am surprised to be alive. Not only that, but I am thriving. I have three children. All of them are in their 20’s and though I have had a tracheostomy, and I can’t move anything except my head, they have settled into “this is our life now.” They know what I can and can’t do, and we live our lives accordingly.
So, why do I call my site “Things I Want Your Heart To Know?” Because my three darlings need to know what is in my heart; and I wish for them to carry my love for them in their own.
He, my late husband, is the reason I couldn’t write last week. Our 10th anniversary was on January 7th, and I was grieving. He may have passed away (in October 2021 it was three years since he died) I still miss and love him.
That’s a problem when you’re living with ALS. When you turn into a quadriplegic, like me, there is no unhealthy rebound, no chance of a romantic relationship, no opportunity to meet another person face-to-face. Loneliness and grieving ensues. When I’m alone in my room, I feel ALONE!!! With all caps and a thousand exclamation points.
What I need to concentrate my thinking on is God’s Word, the Holy Bible. God tells me that Jesus holds me in the palm of His hand. That God will never leave me nor forsake me. I am loved by my Lord, more than my heart and mind could ever comprehend.
Would you like to be loved in that way? It’s very easy! All you have to do is this: Repent of your sins and ask Jesus to reside in your heart (save you). That’s it! My conversion happened at a Christian summer camp. While we were singing a favorite Christian tune, I had an overwhelming feeling of God’s love. I was 17. It changed my heart, soul, and mind forever.
1 John 5:2 – By this we know that we love the children of God, when we love God, and keep His commandments. (KJV)
My husband passed away three years ago, but not before he left me well-cared for. With the money he left me, I was able to afford, among other things, an EyeGaze computer with a stand that swings over my bed and me. All I need is one of my caregivers to set it over me and push a few buttons, then I can take over using nothing but my eyes!
Right now, as I’m writing (eyeing?) this blog post, I am so grateful to my God and my husband for bringing this device into my life and giving me the means to purchase this computer.
But the blessings from my Lord doesn’t end there! During the weeks when I was suffering from one thing to another, God led me through it all. I greatly dislike having to live the life of ALS, and sometimes it’s overwhelming. However, the Holy Spirit comforts me.
First, God arranged to send me to a Christian summer camp. While there, I sang, along with all of the other teenagers, a song that had the greatest blessing. I opened my heart to the Lord, and miracles of miracles: Jesus saved me! He became my Savior and forgave all of my sins; and He still does today.
Hebrews 13:5b – … for He hath said, I will never leave thee, nor forsake thee. (KJV)
As I said in my last post, I am living with both ALS and menopause. I also mentioned that I was about to start taking a pharmacist-recommended over-the-counter pill for the symptoms of menopause. For me it was hot flashes.
The first night I took the supplement, I had zero hot flashes! However, the next two nights, I burned from inside. Then, on the fourth night, I didn’t have a hot flash. And I haven’t had one since! The best I can tell, is that my body was bombarded with a pill it didn’t expect and that’s why I didn’t burn the first night. It wasn’t a surprise on nights two and three, so it had to build up in my system. That’s why, I believe, I haven’t had a hot flash since.
I would recommend that if you’re going through menopause, whether you are living with ALS or not, to speak to your doctor about what you should take for your menopause symptoms.
Psalm 71:12 – Oh God, be not far from me: Oh my God, make haste for my help. (KJV)
If you are celebrating the time of life called menopause *and* you have ALS, you’ve received a double whammy. The good news is that your bleeding will end. However, on the positive side, that’s about it.
I was blessed to have had a hysterosalpingectomy (the removal of my uterus and fallopian tubes), so I haven’t bled for several years. Which was good for me, but excellent for my, then, caregivers. Although that was the only blessing I’ve seen in my travels through menopause, it didn’t truly hit me until near the end of hot weather in our region.
That’s the reason I was on leave of absence, self-imposed. Towards, the end of summer, my hot flashes ganged up on me and really beat me up. For those of you who haven’t felt the wrath of a true hot flash, let me tell you what it’s like: you burn from inside. There’s no way I know to cool the burn. That’s wherein my problem laid. I was exhausted: I couldn’t sleep, which caused me to sleep all day, which further messed up my sleeping habits. You see, my hot flashes happen around 9pm. Then, I fall asleep comfortably, with my fans on and no sheets or blankets. Of course, then I wake up freezing, but unable, due to ALS, to cover myself. I try not to wake up my caregiver, so one night I tried to sleep through the cold.
Tonight, I’m trying a pharmacy-recommended supplement for menopause. Do you have any recommendations?
Psalm 41:3 – The LORD will strengthen him upon the bed of languishing: thou wilt make all his bed in his sickness. (KJV)
Please let me explain: I have a hole in my neck due to ALS.
Once upon a time I was overweight. Very overweight. I’m talking 300 pounds. ALS changed me in so many ways, but weight loss was critical. It was important for my nurses to turn me for a bed bath, it was crucial for my health, and necessary for my heart.
Enter: ALS. I was some what healthy when the symptoms started. Eventually, It got harder to move. One day, I was sent to the hospital for pneumonia. I had to be put on a ventilator. As my pneumonia cleared up, I was apparently visited by my doctor and he asked me if I wanted a tracheostomy, but I don’t remember any of this. I must’ve said yes because the next time I woke up, I had tubing coming out of my neck, and a feeding tube on my left side. Had I been awake when the doctor asked me would like a tracheostomy, I would have told him absolutely NO!! I could never speak or eat again. For my family and friends, on my laptop, I left two or three videos with me talking.
Now, about that hole, from not being able to eat whatever I want (I receive food and medications through the feeding tube) I began to lose weight. As I lost fat, my neck lost weight, too. Now, we come to thick of the matter: The infamous hole; the bane of my life. This hole came quickly. One day when I being given chicken broth (I can still drink), the fluid began to flow out of my neck! I was really surprised and, later, upset. Those were the end of my broth days. It was only the hot drinks and soup that exits my body via my neck. It was the cold drinks that went directly into my stomach.
My doctor is trying to close it up. Yesterday, he put a specialized tape on the hole, and you know I had to test it! I had to have my chicken broth for the first time in a year! It was so good, and it didn’t leak.
Mark 11:22 – And Jesus answering saith unto them, Have faith in God. (KJV)
At the beginning, when I was in my late teens, there was a church I went to. I was present for every program I could go to, including Sunday school, two services on Sunday, and Wednesday night prayer meetings. I bought and read every book on the church’s bookstand and started reading my Bible once through the year. I was truly a (young) church lady.
Then, something happened that changed the trajectory of my life, and gave me a guilt trip like no other. My husband and I (this is 15 years later) found out that the pastor and at least two elders had lied to us. I won’t go into that here, but it caused us to leave that church, with our three children.
We tried another church, but then my husband received his job’s walking papers. We could not afford our home, so he put it “for sale” sign in our yard. I was devastated. After it was sold, we moved to Florida.
My husband and I found a new church, hoping that one would fit with our beliefs. It didn’t. We then tried another denomination. It didn’t fit either. Eventually, we gave up. Therein lies my guilt: I have no idea if my children love our Savior. I hope they do, but God alone knows the status of their hearts.
Although I pray for them all, I still have a feeling of dread. The Bible teaches us that the opposite of faith is fear. It’s time I accept that premise.
Romans 14:23b – …whatsoever is not of faith is sin. (KJV)