Living with CIDP

As I adjust to life with CIDP, I collect here what I will call "CIDP hacks," that is, steps.I am taking to mitigate the effect of this disease.

1. If possible, stay ahead of the pain. At this stage, for me, this involves six 500 mg Tylenol pills spread across the day and three 100 mg gabapentin pills spread across the afternoon and evening. (I have tried THC gummies and have found that a 5 mg or 10 mg gummy makes me feel relaxed and sleepy and does seem to reduce the pain. At this time, I'm focusing on gabapentin for this role, but the gummies may be an alternative.)

2. Hunt for a good way to sleep. In a regular bed, my tossing and turning seemed to upset some nerve somewhere and I suddenly woke in pain. I have discovered that sleeping on the couch gives me more control of my sleeping positions and thus a better night’s sleep.

3. Use speech-to-text for correspondence. I have always been proud of my ability to type and write, but the numbness and loss of coordination in my fingers now seems to make that hard. I have discovered that my iPhone has a speech-to-text option, as does my MacBook (the F5 key) and so now I am dictating my email and text messages. The dictation is not perfect, so I go back and make a few corrections, but this is much faster than trying to type.

4. Prepare for the fatigue. I get tired very easily. I try to factor that into my plans.  I try to make sure that when I “hit the wall”, I am at home and can collapse onto the couch. 

5. Find some good shoes. It is hard for me to put on shoes. So I found on Amazon, for $50-$60, some shoes that I can step into and easily put on.

6. Grieve. There is a mental/spiritual/psychological aspect to this disease, as it greatly disrupts my lifestyle. I am not sure what the solution is, but I am trying to identify this impact and deal with the associated grief. It is grief – I miss my old lifestyle and I miss my plans for the future. Since I must slow down, I am now trying to enjoy the slow lifestyle and not feel guilty for taking naps, sleeping in, or in other ways being inactive. (As often with depression or grief, it is important to have a small circle of friends who are supportive. I am thankful to my wife for helping me and there is a small collection of friends from my church that seem to keep up with me.)

Some Recent Improvements in my Battle with CIDP

From March 16 to March 20 I had daily IVIG infusions at the Cadillac Munson hospital in Cadillac, Michigan. The IV infusion took about 3 1/2 hours each day and involved insertion of an IV, some Tylenol pills and, prior to the IV drug, some benadryl by infusion. The benadryl created some drowsiness and encouraged me to nap during the first hour. After that I read email, rummaged around on Facebook, chatted with the nurses, and dozed off some more. I had no side effects.

By the end of that week, I had noticed some small subtle improvements. In the week that followed, I was no longer digressing as I had before, and my walk was a little bit better. Some pain in my feet was reduced (to level 2 or 3 instead of levels 4 or 5.) This was encouraging!

My condition is still frustrating. I have pain in my feet, especially in the afternoon and evening, and at times it's hard to concentrate. It is still very hard for me to get up from a sitting position. Walking, although done more smoothly, is still painful.

About a week after my infusion I got an email from the Mayo Clinic in Rochester Minnesota inviting me for a visit! In this way, I will be seen by some specialists in this disease, and I am hopeful that this will lead to a constructive regimen for the future.

Chronic Inflammatory Demyelinating Polyneuropathy

In the summer of 2024 I had some tingling and numbness in my fingers and in my feet. I tried to ignore the symptoms, but in the summer of 2025 they got considerably worse. At that time I was scheduling total knee replacements, first for my left knee and then eventually for my right knee, and I wondered if my nerve issues in my feet were really due to bad knees. 

In October, I had a total knee replacement of my left knee. It became clear after surgery that this was not linked to my nerve issues. Eventually, I had a nerve conduction test (EMG) that came back with a diagnosis of chronic inflammatory demyelinating polyneuropathy (CIDP.). I have an auto-immune disease, a disease which is causing inflammations that remove the myelin sheath from my nerves. As I understand it, the myelin sheaths are essentially insulation and as the sheaths disappear, my nerves began to short out. 

This is a chronic and progressive disease, but there are attacks on the disease intended to put the disease into remission and stop the deterioration — or even allow some healing to occur. The most common treatment for the disease is an IVIG infusion. IVIG (another four letter acronym!) is an IV infusion of donor blood plasma that is intended to reset some aspects of my immune system. Beginning this Monday (March 16, 2026) I will have five consecutive days of four hours each of IV infusion at a local hospital. (I will not need to stay overnight.) After that, it is common to have the IV infusion one day every three weeks or so, and so evaluate the success of the infusion. My doctor has put in a request to the Mayo Clinic in Rochester, Minnesota, and so I may eventually get to be a research subject there. (And so my research career continues? If they study me, can I be listed as an author? I wonder if there is some physician at Mayo that would like an Erdos number of 3?)

I alternate between occasionally finding this very interesting — Why do my fingers feel like they do and act like they do? — and also, of course, finding this very frightening. Jan and I have both been a bit depressed by this as we try to figure out the direction of the disease and my disability.

I now walk with a cane. I have small issues with my fingers and so I do not write well. I'm beginning to dictate instead of type. (A draft of this post has been dictated using the MacBook’s F5 function) The constant barrage of symptoms from my nerves, especially tingles and stings in my feet, make it difficult to sleep at night. I have found two solutions to that problem. A doctor prescribed gabapentin and that certainly helps. And a good friend suggested THC gummies. I’ve discovered that a 5 mg THC gummy, which can be purchased legally in Michigan, makes me feel relaxed and does seem to remove the nerve pain for some time. 

At this time, I'm trying to find a good rhythm to the gabapentin and looking forward to next week's IV infusion.

Help Us

The election is over. To my Christian friends who are rejoicing at Trump's victory, please be aware that many other Christians, like my wife and I, are saddened and hurting.

We honestly believe, based on principles from Scripture, that Trump is an evil deceiver, corrupting the Church in America and corrupting our constitution. We are not angry at you for supporting Trump, but we hold our beliefs strongly. We have examined them and believe that they are biblical. We will continue to press on to be ambassadors to this country (2 Cor 5:20.) We are aliens here (1 Peter 2:11) and so we continue to live for a higher country, not our own (Heb 11:13-16.)

Yesterday's result brought fear to people around us. DACA recipients and their parents, already living in uncertainty (for decades) are now much more fearful and don't know where to turn. Some legal immigrants and students on visas believe that they are no longer safe here in the USA and are trying not to be noticed. There are young mothers without medical insurance or money to pay rent or utilities. Families fleeing gang violence in Central America put all their belongings in a few bags, put their trust in God, and have shown up on our doorstep. There are refugees from Afghan and Ukraine living near us, trying to learn enough English to get a job. What can we do for them? How do we reach out and care for these frightened neighbors?

Help us.

Taking a Stand

The 2024 election in in two weeks. Regardless of who wins, as an evangelical Christian I record my stance.

I have taken a stand against Donald Trump for 35 years. I will continue to do so.

I recognized Donald Trump as a corrupt real estate hawker in 1990. That year I drove my children through Atlantic City so they could see the damage caused by his new casino.

When Trump used his millions to bully others and refused to pay his bills, I promised to be frugal and honest in my dealings.

When Trump bragged about his friendship with Hugh Hefner, when he boasted of the many women he had slept with, when he divorced one wife to marry a new model, I struggled to be a faithful husband and a devoted father.

When Trump mocked women, minorities, the disabled, I tried to care for the vulnerable and the immigrant.

When Trump ran for the presidency in 2016, I voted in the Republican primary for Kasich; when Trump won the presidency in 2016, I left the Republican party.

Jan and I have followed this corrupt deceiver for 35 years. He has not changed. Sadly, what has changed is the stance of the evangelical church in America. In 1990, Jerry Falwell and the Moral Majority opposed Donald Trump. In 2016, Jerry Falwell, Jr., eager for political power, bowed the knee to Trump. Today, many Christians in America, eager for political power, ignore the many deceptions of this antichrist figure and worship him. This is wrong. It is sin.

The Third of the Ten Commandments prohibits using God’s name in vain. When the people of Israel, identified with God’s name, worshiped idols, they profaned His name. When Christians in America identify Jesus with Trump, they profane the name of Jesus and also violate the Third Commandment. 

When my grandchildren someday ask, “Why didn't Christians oppose Trump?” I will say, “Jan and I opposed him from the beginning. As did many other Christians. Sadly, we were in the minority in many churches.”

For 35 years I’ve taken a stand against the corruption, the deception, the sins of Donald Trump. As an evangelical Christian, I continue to do so.

Addendum: 

Being pro-life is much much more than a one-line bumper sticker.

Jan and I have been deeply pro-life. We have taken young women into our homes and had single moms - and their babies - live with us. We have repeatedly worked to encourage a woman to keep her baby and also worked to make sure she had support, encouragement, medical support. One of my recent prolife actions was even covered in a Cru newsletter (see here: https://mailchi.mp/cru/comingback-kubicek-9160809...)

But Jan and I are REALLY prolife, not bumper-sticker prolife. Don't be fooled by claims that somehow voting for a criminal, a traitor, a serial abuser of women, is prolife.

What The Bible Does Not Say

 The perceived conflict between the Bible and Science comes from misunderstandings as to what the Bible claims and also confusion about the claims of Science.

Two examples:

Some say: The Bible teaches that the earth is only 6000 years old. This contradicts evidence from Science.

Some say: Science proves life occurred on earth by accident, without purpose. This contradicts the message of the Bible.

We need to be careful to understand the limits of both Biblical knowledge and Scientific knowledge. 

The ancient Old Testament scriptures view Creation and the Creator in ways that are philosophically different from the viewpoints of our modern culture.

We need to be careful to not impose on Scripture our cultural viewpoints. John Walton, in his commentary on Genesis, argues that in reading the Old Testament, we must avoid "intellectual imperialism".   

The Old Testament (first half of the Bible) was written by people embedded in the ancient Near East culture. The oldest portions were probably written in a proto-Hebrew text 3500 years ago.

There is no hint of our modern scientific culture and we should not impose our culture on our reading of these ancient texts. (Indeed the concept of science does not appear until the late Renaissance!)

In The Voyage of the Dawn Treader, the author, C. S. Lewis, has one of the book's heroes, Eustace, meets Ramandu. Ramandu explains that he had once been a bright shining star, hanging high in the heavens above Narnia.

Eustace is shocked at Ramandu's claim to be a (literal) star. 

“In our world,” said Eustace, “a star is a huge ball of flaming gas.” 

Ramandu responds: “Even in your world, my son, that is not what a star is but only what it is made of.”

Our modern scientific culture only looks at what things are "made of", mass, energy, etc.. We weigh and measure everything. This was not the viewpoint of the ancient Near East. 

Modern science has a culture that emphasizes understanding material structure (atoms, molecules) and emphasizes the physical laws of matter and energy. 

This is not a concept that, in its modern form, appears in Scripture.  This does not mean that scientific concepts do not appear in Scripture but that the modern cultural viewpoint is not there.

It is reasonable to believe that the Creator of the universe

 -- a universe with physical laws -- uses those laws and processes to do his will. 

Isaiah 40:22 says

"He sits enthroned above the circle of the earth, 

and its people are like grasshoppers. 

He stretches out the heavens like a canopy, 

and spreads them out like a tent to live in."

This passage is in a discourse on God's power -- and His compassion. It is not a geography lesson or scientific discourse on celestial mechanics.

(In that passage, it also says, 

"He tends his flock like a shepherd:

    He gathers the lambs in his arms

and carries them close to his heart....")

I love the Old Testament (indeed I blog on it daily!) 

" The Bible was written for us..., but it was not originally written to us, but to the [ancient Near Eastern] people of Israel." (John Walton)

The Old Testament was written in an ancient agricultural and  patriarchal society of men, wives, children, flocks.

The emphasis on fruitful reproduction (of humans, animal flocks, vineyards) dominated the culture. Powerful men had more than one wife.

There was that strange rite of circumcision.... 

Followers of God were to put a railing on their roofs as an act of compassion for their neighbors. (Deuteronomy 22:8)

The Creation Story of Genesis 1 breaks Creation into six parts, called Days. 

In Day 4, the sun, moon and stars are created; these objects are to 

"serve as signs to mark sacred times, and days and years...."

The object which marks out the time of days is created on Day 4.

And the six days of creation in Genesis 1 are collapsed into a single "day" at the beginning of the next chapter. 

Insisting that Genesis 1 provides a historical timeline is contrary to the purpose of that chapter.

In classical Jewish and Christian thought, across several thousand years, there are many interpretations of Genesis 1. Claiming that the Bible teaches a 6000-year-old earth is forcing into the Bible something it does not say.

(I can elaborate further, if wished -- email me!)

The Bible is not a magical book of incantations that miraculously somehow teaches science to a modern society. 

It consists (I believe) of writings by a variety of men (and a few women?) "God-breathed" by the Holy Spirit, to write in their own culture and their own language.

(2 Timothy 3:16-17)

We do damage to Scripture when we attempt to enforce on the Bible (especially the Old Testament) our culture's scientific viewpoint.

Many believe that there is conflict between the Bible and Science. 

This is due to misunderstandings about what each claims as truth.

I've argued that the Bible does not say a lot about the domain of science. Because of the culture we live in, I need to spend time clarifying what Science does NOT say.

What Does Science Say About Our Universe?

 The universe is rich and complex, with hundreds of billions of galaxies with hundreds of billions of stars!

The earth teems with life!

There about 500 species of living primates.

There 37 species of canines and 41 species of felines.

The earth teems with life!

The universe has logical, measurable processes. 

In the domain of science we study these processes through experimentation, measurement and conjecture, followed by more experimentation.

Agreement

Both the Bible and Science describe a universe that appears to have had a beginning.

The universe obeys certain processes; the study of these processes is the goal of science.

The universe and life within it is complex, intricate, beautiful and awe-inspiring.

My life as a Christian and as a scientist has included times of pleasure and joy -- and excitement as, occasionally, I've gotten a glimpse of the intricacies of the universe!

But what are the conflicts between the Bible and science? Let's explore what each does NOT say. (I will do that in the next post.)