Category Archives: No Category

Living with Menopause and ALS

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)

A Hole

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)

Faith Vs. Fear

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)

Yesterday is in the Past

After my difficult seven days last week, I’ve been given a reprieve this week. That is, until last night when I ushered in yet another panic attack. Today, my suction machine broke. It’s a piece of machinery that I need several times a day. All I want is peace!

That reminds me Job from the Bible. He was a wealthy man; Job had 10 children and a wife. He had many heads of cattle, a land full with growing food. Most of all, it was said that he walked with and praised our Holy God. And he was humble. One day, Satan went God with the hopes that he could have Job reject God. God gave permission to Satan to take all Job that had, but to not touch Job, himself. And our enemy did just that. He took everything from Job, including his children and his wife, who had the audacity to say, “Curse God, then die!” Despite everything Job went through, he sinned not against God.

Satan returned to the Almighty and told God that, of course, Job would not blaspheme the Lord, because You would not let me touch his body. Therefore, God allowed Satan to touch Job’s body, but to save his life. Our enemy went to work quickly; he cast hard and painful boils all over his Job’s body. Even still, Job did not curse his Lord.

In the end, Job received everything back, 10-fold. Having never cursed God.

That made me think about what I write here. Am I just complaining? Am I better than Job? I am trying to be like Job. Are even my thoughts what God expects them to be?

Job 21:27a – Behold, I know thy thoughts… (KJV)

I Was Tempted…

Suddenly, my G-tube, the tube that goes through my left side directly into my stomach, is acting up like a spoiled child. This is how I get my liquid food and my multiple medications. It began with the medications not even forcibly going in. My doctor, who graciously makes house calls, came and changed the tube. When it was out, we could clearly see that it was twisted. We thought the new tubing solved the problem. It didn’t.

My physician came to our home, again, and put two stitches at the site. Two days later, he put in two more, because food, bile, and medications kept dripping out. He came today for a check-up. He was happy with how the tubing and my skin looked, but the real test was about to happen. My doctor then took a large syringe and pushed in a lot of medicated water. Nothing came out! I was praising God!

I also received the first of two Covid-19 vaccines. I am prone to panic attacks when I have difficulty breathing, and that was a symptom of the vaccine. My mom gave me a medication to calm me. Since sleepiness was also a symptom, I spent the evening dozing comfortably.

I have a special hospital bed, made for people with bed sores. Monday night, my bed alarmed for the first time. We had no idea what it meant. My sister, who lives next door, came to bring us head phones to lessen the noise of the very loud alarm. Mom put earplugs in my ears, then she added the head phones. I heard the long beeps so minutely that I was able to sleep. In the morning, the bed company sent an engineer to fix my bed. That night, the alarm went off again. Mom dressed my head up as she’d done the night before and as it was 3am, we went back to sleep. When we awoke, the alarm was off. Mom had done some googling and found it was the humidity was the culprit. We had been using a dehumidifier, but Mom decided to put a fan in front of my bed, which is temperature-sensitive, and emptied the dehumidifier before she went to bed. It worked! We both slept through the blessed night.

I firmly believe that the enemy was trying to make me blame God. Doesn’t he know by now that I will never betray my Lord?

Luke 4:13 – And when the devil had ended all the temptation, he departed from him for a season.

Our Trip From Connecticut to Rhode Island to Massachusetts

Of all of my trips with my children, this was one of my favorites. In our attempt to see all 50 states, we next decided to drive to Connecticut, Rhode Island, and Massachusetts. God blessed us with perfect weather and a bunch of fun experiences.

Before we left for any destination, I would check online for exciting things to try and they had to be within the trajectory of our travels. We hit gold in Hartford, Connecticut. I found, online, the “Hartford Zoo” which wasn’t a zoo at all. It was a scavenger hunt! We had to find stone, ceramic, or metal statues of animals all throughout the city, as according to our Zoo Map.

Those in our party were my husband, Mike; my three children, Mike, Kimmy, and Danny; my niece, Missy; and me. We were a crazy crowd, running around the city. In the end, we found them all; Missy and Kimmy were given kudos for finding the place where one animal had been, but was there no longer.

Next, we were off to Rhode Island! There, we found a beach, with small rides for my youngest two, Kimmy and Danny. we walked on big stones in the water, too cold for swimming as it was October. We took an abundance of photos, and then we drove to a restaurant, had dinner, and drove to Massachusetts and our hotel.

As we awoke in Salem, Massachusetts, we got ourselves ready and went to breakfast. This town was why we traveled two weeks into October. We would miss the Halloween traffic and the scary things that the holiday entails. We were there for the historical value: the Salem Witch Trials, the House with Seven Gables, the birthplace of Nathaniel Hawthorne, and the Salem Harbor, which was important in the Revolutionary War.

We got in line for tickets for a reenactment of the Salem Witch Trials. While we waited for our time slot, we went to the harbor and read the plaques about the American Revolution, and the importance of the harbor during the war. There also was built a bow of a ship for children to play upon. Danny made a pirate’s hat. (There was a stand with a woman who helped children make the hats.) So, Danny played on the boat awhile.

We then went to the House of Seven Gables. It was great to see such a historical house, complete with a hidden room we had to climb to. Now it was time for the reenactment. We sat there and I began to think we were on trial! It was surreal how great they portrayed the Salem Witch Trials.

God gave us a wonderful weekend. His grace amazes me every day. This was before ALS, and I’m so thankful that I had this trip with my family.

James 4:6b – …(He) giveth grace unto the humble. (KJV)

At the Time of my Death

One of my children recently asked me, if at all possible, could I reach out to them if I know I’m dying. I told them I could live another 20+ years. As my neurologist told me, I will live with ALS for a long time. I also told them if I know I’m dying, I would certainly let them come to see me. I would want to see them too.

I did almost die twice. I’ve had a tracheostomy, which controls my breathing. My lungs aren’t strong enough to breathe anymore. So, it happened one day that my trach fell out of my neck. I had been turned over when it jumped from my throat. My nurse, Katrina, who is also one of my best friends, flipped me back over. She noticed I had turned blue from lack of oxygen and I passed out. She ran to get my emergency bag, wherein lay my extra trach and the assistive device that would help her give me oxygen through now new trach. She saved my life.

The same thing happened when my mom and dad were watching over me. They are my heroes too.

So, my children, if it happens like that, I can’t give you notice. I promise you that, if I do know, you’ll definitely get a phone call. I love you all so very much. And always will.

John 14:27a – Peace I (Jesus) leave with you, my peace I give unto you… (KJV)

Our Growing Family

Just this past week, I received simply wonderful news! My son and his wife, who had lost a baby at two months along, told me they were having twins! Fraternal twins. So, we don’t know which sex will be coming out: either two boys, two girls, or one of each. It’s fun to guess.

After our God, my family is so important to me. Without them, I would be lost and lonely. We are all ecstatic about the upcoming four births: my niece and her husband will deliver first. My nephew and his wife will have their baby next. My son and his wife will birth their twins last.

Family is everything, including our faith. When I was growing up, and it was only Dad, Mom, me and my two sisters -before we were married or had nine children between us- we used to go camping every year. The campsite was raked, the tents put up with big, plastic, orange stakes , and, lastly, the huge screen over the table and the hot plate, which Mom or Dad would cook our hot meals on. Every day, we enjoyed the beach, the water, and jumping off the raft into the deep water. We would go back to our campsite, and, after dinner, we would search for long, sturdy, thin sticks, which we would use to toast marshmallows over our campfire.

Much later, when I was the mom, my husband and took our three children to the campgrounds I grew up in. We brought our rake, our family-sized tent, and the children’s exciting, mode of mobility: my eldest son’s blue bike, my daughter’s princess jeep, and my younger camo-like jeep. my oldest boy learned to ride his bike at that campground. You should have seen him … with a smile on his face, he went all over the sandy campground. I should have said, he flew over the sand, he was going so fast. My other children were equally as happy driving their jeeps, but they had to stay near our camp. Of course, we also enjoyed the water, the baby pool, and the our time around the campfire, but we also played sports. They had a basketball court and a baseball field. We and our children utilized both several times. They also had arts and crafts for kids, which my children had an exciting time.

Our growing family is still the love of my life, after our Lord Jesus Christ, and I am so blessed with the family that I love so very much.

Matthew 5:8 – Blessed are the pure in heart: for they shall see God. (KJV)