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September 13, 2015

Winter Weather Whine

by on September 13, 2015. Filed under Thoughts



Since my disability I have been surprised every year by the pain associated with the arrival of cooler weather. Here I am, relatively enjoying the warmth of Summer, when the cooler weather of Fall (once my favorite season) brings me so much pain as to nearly restrict me in bed. Maybe “restrict” isn’t right. I just don’t want to get out of my warm bed.

It isn’t laziness. I’m not lazy. It’s pain. What everyone else experiences as “great weather”, anything cooler than hot, is painful to me. It seems so unfair. It’s a great week for a week-long hike or camping trip, two of my previously favorite activities.

But I won’t give up. I’ve been wearing hoodies all summer even in 90+ degree heat. Now I’ll be breaking out my winter coats just to survive Fall.

That’s enough whining. I won’t let pain stop me from living. So I’d better get moving. (Writing this post is a delay from getting out of bed.)

The guiding factor or strength for me isn’t simply anything of this world. It’s God. God alone is able to bring me to do the right thing when it is so difficult to do it. There are lots of motivating factors, my wife, children, grandchildren, but it is only God Who motivates and inspires me enough to choose pain over comfort in order to bless others. It’s because of His Son, Jesus, and what He did: choosing pain over comfort in obedience to His Father. It was that obedience that brought about my salvation-and that is everything!

As I finish this post I’m thinking about and planning what I need to do to survive 70 degree weather this week. Remember that a “high of 75 degrees” happens sometime after noon. Before that time is it much cooler. The temperature right now (11:30 a.m.) is 66 degrees. To me, that may as well be freezing!

So I’ll bundle up, put hand warmers in my boots, and brave this “freezing” weather so I can  “live and move and have our being” in Him, for I am “God’s offspring”. (Acts 17:28-29) I’m no longer on this earth to please myself but to please God Who saved me. Praise Him forever!

Time to get up.

June 26, 2014

getting dressed

by on June 26, 2014. Filed under Thoughts


Sometimes just getting dressed is difficult, a big deal.

I know it is even far more difficult for others. I think of Joni Erickson Tada. I shouldn’t complain…


January 14, 2014

How do I do it?

by on January 14, 2014. Filed under Thoughts


How do I do it?  How can I function with all the pain I have?  How do I get up, go out, do this and that, live life when constant and sometimes severe pain infiltrate almost every part of my body?

It seems that God made me this way for His purpose. Because I really don’t know how I do it.

This morning, so far, is the best morning I’ve had in a very long time.  I’m feeling selfish–which I don’t like.  I want to enjoy this very low pain morning for as long as I can.  I feel like I need this break.  I get worried about my heart.  How long will it be able to handle the stress of constant pain.

My pain does have one up-side.  It keeps me close to God.  I’ve no where else to turn because no one really can understand the pain and stress that I feel.  My wife is great and gives me love, compassion, and she helps me in every way. But even she can’t fully understand.  That’s okay because if she did understand that would mean that she feels the same pain and I wouldn’t want that for anyone.

There are other people in this world who have pain. There was a man in California that I used to email once in a while. He took lots of nasty pain killers and was still in pain. He realized that the pain killers were hurting him so he was weaning off them last I heard from him. He would feel sorry for me and I would feel sorry for him. I think he was worse off than I. Who knows?

Writing a “poor me” journal entry seems so selfish, so narcissistic.  I’d rather write about how God sustains me. That’s the answer to the question: How do I do it?

How do I do it?  God sustains me!

“I lift up my eyes to the hills–where does my help come from? My help comes from the LORD, the Maker of heaven and earth. He will not let your foot slip–he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep. The LORD watches over you–the LORD is your shade at your right hand; the sun will not harm you by day, nor the moon by night. The LORD will keep you from all harm–he will watch over your life; the LORD will watch over your coming and going both now and forevermore.”  (Psalm 121)

November 29, 2011

Finishing Well

by on November 29, 2011. Filed under Christian life / church, Personal, joni


Today’s devotional explains something that, over the years, I’ve learned about my own Christian journey. It explains part of the reason why I (usually) don’t get discouraged during those “dry” times in my life. I used to get very discouraged during those times early in my Christian journey. But I’ve learned that even in those times, especially during those times, I learn new things about God, myself, and the people and world around me.

“Yea, though I walk through the valley of the shadow of death, I will fear no evil:  for thou art with me; thy rod and thy staff they comfort me.”

Yes.  Even in the driest of times, even in the most stressful, tense, painful, horrific of times, even when I’m being poured out like a drink offering, yes, even in the valley of the shadow of death, God is with me; I will fear no evil.  Have faith in God, my friends. And praise Him forever!

Please read the attached devotional.   Joni so often says things so well.

Love In Christ,

June 15, 2010

Poor, Poor Pitiful Me?

by on June 15, 2010. Filed under Christian life / church, Personal


People shouldn’t think that I’m always strong. I know how to rise to the occasion. By the grace of God, by the power of the Holy Spirit, I get up and do what needs to be done. Just going into the kitchen and sitting on a chair with a small blanket over my knees and my feet up on another chair-that’s hard work for me. (It’s worth doing because I can be with my family during meal time.) But that’s not being strong. Here’s why:

We are taught and reinforced to put on a good face. “Smile!” That’s what we hear before the camera flash no matter what kind of mood we’re really in. Hardly without exception we smile.

There is a difference between “being” and “doing”. We’re trained and we force ourselves to “do strong” things. Some of us wake up at 4:30 in the morning, commute several hours to work, work 10 hours, another two-hour commute to get home, and barely have time for dinner before bedtime just to start the whole process over again. Even if it’s not to that extreme most of us know how to “do” strong things.

To give a personal example, no matter how high my pain level is, I was taught to be “polite.” So if I’m miserable with pain, feeling grumpy, maybe I had an argument with a family member, and you come up to me and ask, “how are you doing?”, I might answer by saying, “fine!” I don’t think that lying like that is really polite.

But the real deal that I want to talk about is to “be strong.” That involves something more than the learned external performance which is, in comparison, easy to do. To be strong is a matter of one’s character and one’s relationship to God. It is developed over one’s lifetime. It is very personal as opposed to what we do externally.

Most of the time, I think, by the grace of God, I am pretty strong. God granted me strong faith, given me much grace, and taught me to depend on him. As a result I am able to be thankful, worship God, and encourage others in their faith. All this is an awesome privilege.

There are those times when I’m feeling particularly weak. I can say with Paul, “to be in heaven is better by far.” I won’t go as far as Job who said, “may the day of my birth perish.” But really it’s the same thing. It’s admitting that I don’t want to be around in this world any longer. And that’s completely selfish, lacking in strength. It’s a pity party.

I don’t get envious of people when they get to do good things. But I am desirous of the good things that they get to do. Maybe that’s a kind of envy.

When I hear about somebody who went on a hike in the mountains I long for that joy. When I hear somebody playing guitar as I used to I can become very melancholy missing that joy. When I realize I failed to be a good dad because of my physical constraints and pain I grieve not only for my children but for myself. I have a pity party.

Pity parties occur when I am weak. It does, eventually, caused me to turn to God for my strength. My life is redeemed from the pit. (Maybe pity parties are what you do when you are in a pit. haha) He crowns me with love and compassion. (Psalm 103:4) “I trust in your unfailing love; my heart rejoices in your salvation. I will sing to the Lord, for he has been good to me.” (Psalm 13:5-6)

I’m not strong. But God is awesome. “The Lord is my strength and my shield; my heart trust in him, and I am helped.” (Psalm 28:7)

My comfort is that when I’m feeling weak I can call upon God who is always strong. Thankfully my pity parties do not last very long. The Lord is my strength. Please pray for me. We all need to pray for one another!

Alive in Christ,

May 3, 2010

2 Seconds Without Pain

by on May 3, 2010. Filed under Personal, health / disability / pain


I am in constant pain–but I need to qualify that a little. I sleep to escape pain and to “reset” when I am having a high level of pain. So usually there is only pain or sleep with one minor but notable exception.

It seems odd to me every time this happens. Sometimes once or twice a week I will experience about 2 wonderful seconds without pain. It reminds me what it is like to not have pain. It is otherwise difficult to remember what it feels like to be without pain.

On occasion I will wake up, usually after having a vivid dream, and feel no pain. Zero. For the last 10 years it is the only time I feel zero pain anymore. But it only lasts a couple of seconds. I barely have time to enjoy it before the pain returns.

When the pain returns the sensation that I have is as if pain itself is poured into my veins as it spreads down my legs and arms into my feet and hands. It is a very odd feeling being followed by the usual, constant pain that I feel.

I’m glad that it happens. Even if just for 2 seconds I delight in the pleasant feeling of having no pain. It is also a reminder to me and thus a hope for a solution. If I can be conscious yet without pain perhaps there is medical solution that hasn’t been discovered yet. It is also a reminder and thus a hope for that day when there will be no sorrow and no more pain.

“And I will rise when He calls my name; No more sorrow, no more pain…” (from the song “I Will Rise” by Chris Tomlin, one of my favorites)

Something that I’ve come to realize as a byproduct of these events is the “wall” or limitation of the pain I feel.

It is difficult to describe some things when there is no clear point of reference. So be patient with me and my words.

Can you imagine a system of hoses that are connected together with a funnel at the top? There is also a way for the air to escape so that one can pour water into the funnel and it will fill the hoses. When water is poured into the funnel it flows freely and quickly into the hoses. But when it reaches the end, when all the hoses are filled, the water no longer freely flows into the hoses.  It is restricted by the capacity of the hoses.

After my 2 seconds without pain when pain is poured back into my limbs it flows freely and quickly to all parts, in fact, to my entire body, not just my hands and feet. But as the pain finally reaches my hands and feet the flow stops, everything is filled. If it kept pouring in I fear the pain would be unbearable.

I suspect, as I am only able to do, that the medications that I take, Lyrica (like Neurotin) and Trileptal, which each are presumed to block different neural pathways, are the limiting “gatekeepers” which prevent the pain from entering any more than it does.

My explanation is poor, I think. What I feel is known to me but somehow I can’t explain it clearly. Please forgive me. My hope is that if someone else experiences something like this that they will know they aren’t the only one who feels it. They have a companion.

I take great comfort and refuge that Jesus knows exactly what I am feeling and He has compassion for me. He has given me faith and strength to endure. He is my Redeemer and Savior. I will praise Him forever.

January 12, 2010

Life Outside My Bubble

by on January 12, 2010. Filed under Thoughts


It is difficult to communicate some things. Georgia understands. She understands at a depth like no other person. She understands this: I’m wearing out in ways other than my physical body.

As you get older your memory begins to fail. This is happening to both of us. Sometimes it is funny to us but I think most of the time it is frustrating to us. My capability to organize my thoughts and even to pull out the correct words from my brain may be related to short-term memory, or to the meds that I take (which affect neural pathways), but there are other things happening to me in addition to these afflictions.

Probably due to the constant onslaught of pain signals to my brain it seems to me that my brain’s “bandwidth” is far more narrow than is common for most people. I can almost feel what it is like to be autistic or with other social disorders. I can’t seem to process information input as fast as I once was could. I overload. I get stressed. I shut down.

It has become a fearful challenge for me to attend any large gathering especially if anything is expected of me. I do it anyway in order to be part of life–specifically to be a part of family, sharing my life with my wife hopefully to be a blessing to her and to my children. I go to church and can act normally but what is really going on is an increasing overload. I have missed large parts of every message for months now because this overload, stress, and pain. The overload causes me to really shut down, to go to sleep, right in the middle of our church service.

Even in small gatherings there is a significant “acting” that happens. You could call it “rising to the occasion”. I force myself to be a part of what is happening. It is like running to get the newspaper on a cold, wintery day in bare feet. You can force yourself to do it but only for a precise, limited time–just enough to get to the sidewalk and back. That’s it; that’s all you can handle. In the same way I do whatever is expected of me. I go to my doctor and then go home to crash. I play with my grandchild, something I love to do, but then I’m spent. Nothing left except to sleep. Sleep–that’s how I reset for the next thing.

My entire life outside my cocoon is like what I have described. Unless I’m in my 80 degree Fahrenheit room, feet elevated and wrapped in blankets, I’m stressed. Even our morning family Bible study, which I love, is difficult. I’m outside my “bubble” of comfort. We try to make it suitable outside my room, feet elevated, “shields up” (I wear a thermal hat or hoodie), a blanket wrapped around my feet and legs, and one of those parabolic heaters aimed at me. It is still stressful. I take a nap after Bible study.

My reluctance to pain affects my personal life in other ways. It is difficult for me to brush my teeth so I neglect to do it as often as I should. There are numerous other ways that I don’t take good care of myself. This, sadly, causes my wife to become stressed. She wants to take care of me but I “don’t want to put her out”. She wants me to take care of myself but I don’t want to put myself into a world of pain. So many things that should happen don’t happen.

I don’t see any solution in my future except the complete healing that I will have when I’m in Heaven. Until then I will function at the best level that I can. Every morning I will force myself to be a part of this world of pain that I must endure in order to be a part of this life of love that surrounds me. God is good.

Thanks for listening. Time for a nap.
In Christ,

December 30, 2009

Camp Susque photo

by on December 30, 2009. Filed under Thoughts


Just a photo – Camp Susque photo


December 10, 2009

Holding Back Pain and the Occasional Surge

by on December 10, 2009. Filed under Thoughts


I can only relate my experience with pain as I did in the journal entry Lightning Bolts of Pain. I don’t understand the processes involved.

I spend all my waking hours managing pain either through conscious activities such as distraction, keeping my feet elevated and warm, through anti-seizure medications which seem to hold back the pain, or unconsciously.

Occasionally I make a mistake, maybe it’s more like an overload of the stress involved holding back the pain. I sometimes accidentally allow the pain to come through and actually feel it in its full force. It’s horrible. This only happens about a couple of times a month. It is a lot of stress to hold back my pain but I’m not really conscious of the scope of it. Let me try to explain this.

Yesterday evening after a particularly stressful day including more activity than usual and constant higher pain levels I was in bed trying to get my feet “stable” again. Sometimes I hold off going to sleep in till a reasonable hour so that I don’t wake up at three in the morning. I have to hold off at least until 9 PM when I am due to take my nighttime medications.

This was the situation when I made a mistake, or overloaded; I stopped holding back the pain. All of a sudden there was a surge of pain that was almost a whole body sensation. It was mostly my feet and hands of course, but several other areas also that I had forgotten about. It was as if every area of pain that I was holding back just let loose, a surge of pain. It was horrible as if a sudden disaster came upon me. I immediately turned away from whatever it was I was doing and had to consciously push back the pain. That wasn’t an easy thing to do. It was as if I was pushing it back into a box where my subconscious could take over and do its part to manage it helping to keep it at bay.

The event only lasted a few seconds, maybe 10 or 15 seconds, but unlike a lightning bolt of pain where I had no control this was something that I had to make quite a conscious effort to get it back under control.

October 7, 2009

Audio Recorders part 2 (two samples)

by on October 7, 2009. Filed under recorders, technology


Two samples:

WS-510M with a lot of handling noise. But the hiss is from the recorder. Converted from WMA to MP3.

LS-10 was better positioned. The difference in clarity is striking. Converted from WAV to MP3.




All journal entries are copyright by Ed Rodatus - all rights reserved.
(Except the entries in the "joni" category. All the "joni" posts are from the Joni and Friends daily email devotional.)

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