Archive for April 2011

Never-ending pain…   3 comments

How quickly our perceptions become relative to the crisis we’re currently in. Yesterday, GP had a better day. What does “better” really entail? In this case, it means that GP did not have screaming, writhing, begging for help, longer than two minutes, episodes of pain. He DID have regular ‘ice-pick’ pain and as the day wore on, 2 epics of less than two minutes each. So, “better” meant that he still dealt with constant pain in his ear, a headache (we think this results from the condition of constant pain or from allergies caused by the wind and springtime), and stabbing electrical shocks. This is not normal!

He described his pain to me the other day in this way. “The constant pain is like someone threw an ice pick in my ear and it is still sitting there. There is a ring of pain around the ice pick. Then, when the stabs come, it is like someone poured a chemical on that ring that makes it explode into way more pain, going up in fire around that same ring. Instead of just the constant ring, it is a column of exploding fire in a ring shape. Then it goes back down to the ring around the ice pick.” I cannot imagine this. I dare not imagine it when I am with him. It is only when I am not in the same house with him that the grief and fear and desperation come out. This is scary and awful!

God’s love is meteoric,

his loyalty astronomic,

His purpose titanic,

his verdicts oceanic.

Yet in his largeness

nothing gets lost;

Not a man, not a mouse,

slips through the cracks.

Psalm 36:5-6 (The Message)

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Posted April 29, 2011 by broshaker in The Story Overview

A Better Day   Leave a comment

The creativity of the blog post titles are overwhelming (read with a sarcastic tone.) Title creativity is at the bottom of the list under “things to improve upon” right now!

GP was at a 7 for his constant pain today, but had fewer short ice pick pains (3 an hour) until 2:00 or so. The pains are not occurring more frequently this evening, but are more intense and lasting longer (10-20 seconds.) It doesn’t sound like a long time, but try pinching your cheek for that long and imagining the pain times 100 and you can get an idea of how long that really is! It has definitely been a better day than yesterday, and we are grateful for that! GP is thankful for his family – he told us so! He is also thankful, (and so are we!), for thoughtful friends. It would be so much harder to go through this without our many loving friends.

I am continuing to read Striking Back! by Weigel/Casey, which has been helpful in consolidating the information that can be found on the Internet. One of the points I read today concerns the medicine that GP is on. “Pain relief doesn’t usually happen gradually as the doses go up. It’s usually an ‘all-or-nothing’ thing…’The blood level must get up to the level of pain, and then the pain can go to zero.” We are hoping that we will find a level at which his pain will go away, but not so high that the side effects are unbearable.

We know that God directs our paths, because we ask Him to do that…daily, hourly, sometimes minute-by-minute.

Posted April 29, 2011 by broshaker in The Story Overview

Escaping…   1 comment

I’m trying to help him escape it. He has had 4 epics today, and more frequent rises of pain. The duration of attacks is short, but tears have come more often. The last hour has slowed down to every 10 minutes or so. The weather is beautiful, there is no wind, and he has tried 4 times to walk outside to see the dogs. Each time, he has run to the bedroom, and I go hold him and tickle him and love on him. Our job is to stay strong for him, (he relies on this), and to take him away from panic. We do this by making observations in a very matter-of-fact voice. We’ll say “Tough one”, or “That was a drag” as if we were reacting to a bad frisbee throw or a spilled glass of water. This helps to center him. We also tease him by telling him, with a smile, that he doesn’t have to pretend he’s in pain in order to get a hug or a tickle. He is reassured to know that we know that it’s bad, but we’re not going to fall apart on him, or ever stop seeking an end to it.

Posted April 27, 2011 by broshaker in The Story Overview

Pressing on   1 comment

The comments. Thank you for your comments which are so encouraging and strengthening. But above all, thank you for your prayers! This is the true strength.

GP is having a tough time this morning. He is at a 7 in the constant pain, and sharp pains up to a 10. He has had three short epics this morning, and an epic that lasted two minutes. It is awful. I will try to post more later.

Posted April 27, 2011 by broshaker in The Story Overview

Triggers?   9 comments

This is an area that drives us crazy. We are constantly trying to pinpoint a trigger so that GP can avoid it! In the first couple of months, being outside was a clear connection to higher pain. We also felt that the cold weather and low barometric pressure added to his pain levels. We could open a window somewhere in the house, without him knowing that, and he would feel the effects every time.

Typical triggers for TN patients can be; brushing teeth, blinking, putting on make-up (definitely not likely for GP), chewing or swallowing, wind or light breezes. He does not have pain from any of these situations, with the exception of the wind sometimes. We have carefully noted what he was doing at the time of each episode, and we cannot find any pattern or consistency in location, time of day, food, or activity.

He has tried to go outside for the past three days, and has had an attack each time. It has been very windy up here! He feels that this may cause an attack, so is obviously reluctant to go outside. The dogs, Panzer and Shishka, really miss him!

GP is at a six this morning! He has had a few rises, but they are mercifully short. Hugs help him get through the rises and attacks.

There are many of you who have given us great suggestions for pain relief and help. We are looking at several options: Upper Cervical Care, Accupuncture, Vitamin B12 therapy, Biofeedback, etc. We will be meeting with the neurologist on the morning of Tuesday, May 3rd. We will review the MRI/MRA tests with him, and assess the effectiveness of the Tegretol/Indocin medications. Our neurologist has been and continues to be responsive, compassionate, and knowledgeable. There is a limit to what he is able to provide, and we may need to go elsewhere. I will be updating you as soon as there is new information.

Posted April 26, 2011 by broshaker in The Story Overview

Monday   4 comments

He went to bed last night after 10 minutes of no pain! What perfect timing…going to sleep is often the hardest part of the day. GeorgePaul said to me yesterday, “Mom, this pain is truly terrifying; you can’t hide from it, you can’t defeat it, you can’t do anything.”

This morning he is at a 7, but is in good spirits. He stepped outside to feed the dogs, but the pain attack sent him back in. One step, one minute, one small triumph at a time. He was willing to try! God hears your prayers. We feel the result! Thank you for this!

Posted April 25, 2011 by broshaker in The Story Overview

Morning…   5 comments

Woke up at a 7. He has endured two episodes – we call them ‘epics’. These episodes are when the pain rises to a 10 or more and grips him without relenting. We try to have him focus on us, or a song, or a funny saying and we try to get him to control his breathing so he’s not hyperventilating. One epic lasted for five minutes, the second for two min. The rises are coming more frequently this morning. Thank you for praying.

Posted April 24, 2011 by broshaker in The Story Overview