Hopeful

Hello dear family, friends & bible study ladies:

I want to thank you so much for praying that Jim would make it to his appointment.  He made it!!  He had not 1 chill.  I thank you so much for your faithfulness to us in prayer.

So, Jim's appointment has left me...hopeful.  The doctor was kind, knowledgeable and respectful.  There were some things he said I liked and didn't like.  As I thought on what I didn't like, I even saw that in a better light.

Here are the results of the appointment.  We gave the doc as concise of a 5 year history as possible and his med list.  He listened longer than some doctors.  Only got that glazed look in his eyes towards the end.  He said he does NOT believe this is  ALS (Lou Gerig's Disease.)  (great news there)  He didn't have all of Jim's tests yet, but upon his assessment of Jim's responses when he looked over Jim, he's not concerned of ALS.  Without all of Jim's tests in and for only seeing him this one time, he made this statement that I didn't like.  It's not important that we know what this is, but we need to get Jim's symptoms under control.  However, as I thought about it, based on the rest of the appointment, I think what he was saying was this.  "I am going to look under every possible rock and order every possible blood test (which he did order several).  In the meantime, let's try and get Jim some comfort."  So, actually this was a good thing.  Then he said something I liked.  "I'm going to give Jim this medicine.  I hate to put him on another medicine, but..."  I liked that because too many doctors listen for 5 mins and pull out the pillbox. 

The medicine Jim is on is tegratol, it's for seizures.  He's using this to treat some type of excitability of the nerves thing.  It covers a multitude of issues that could be going on.  He believes Jim's nerves were seriously injured from the radiation. (1st doctor, other than the chiro to make that assessment, which is something we thought of all along)  This damage could be what is causing Jim's nerves to go berzerk.  And that just makes the neuropathy all the worse.  So, Jim will take this med for a week, go up in a dose and we will go back to the doctor in 6 weeks.

SNAFU...However, we already hit a snafu.  Jim was almost hallucinating from the meds.  I brought a med sheet for the doctor, but forgot to add one med that Jim started taking just a few days ago.  Jim has chronic yeast infection and so he started taking fluconazole.  Well, we couldn't remember the name of the drug to tell the doctor, and wouldn't you know there is a medium risk contraindication of fluconazole and tegratol.  So, Jim had to go off the new med until he is done with the fluc. med.  He didn't want to because believe it or not, in 1 day, he thought there might have been the possibility that he was feeling slightly better.

Soooo, that means we'll have to wait at least 5 more days until we start the tegratol again, and then give it a week, go up in dose and I'll let you know it all works out in a couple of weeks.

How am I?  I thought you would never ask.  Well, as most of you know, I went down in my depression meds.  My plan was to go totally off, but I was having brain twitches, so I am going off slowly.  I may have to reassess this plan.  I am on the meds not for depression, but for Post Traumatic Stress Disorder.    Taking Jim to the doctor/AGH hospital (Happy Laura?) caused my PSTD to go nuts.  Jim said he noticed it right away in the morning.  Maybe he was right.  I felt it after the appointment when we were walking to the blood lab and I forgot my purse in the office.  All of a sudden panic kind of started a bit.  But THEN, we had to wait about an hour for Jim's blood tests.  That just did me in.  I was shaking on the inside.  I had the chills.  I couldn't even drive home.  Thank goodness my sister came with us to help me with Jim.  She ended up having to ride us both home and then had to go and get Jim's prescription filled for us.  I stayed in bed the rest of the day and then half of yesterday.

I DID NOT LIKE THIS.  I don't like that terror/panicky feeling I get.  So, prayed that I am healed from PTSD, too.  I so wanted to go off the depression meds totally.  I feel more alive off of them and have actually been doing better in the day to day, off the meds.  But that PSTD reaction on half dose really makes me question going off them.  I mean, it's not like Jim's life is ever going to be doctor, hospital free, without a totaly healing.  But really, one of us needs to be totally healed, or what will we do?  So, keep praying, and don't forget me, too.

All in all, I feel hopeful that Jim will get some relief.  We shall see.  Thanks for being such faithful friends and family.

US

Hope on the horizon?

Well, Jim hasn't had anymore of the very dangerous episodes.  He's had episodes, but not ones where he thought he was dying again.

Because of my blogging, Ruth contacted Andrea, and Andrea got Jim an appt with a neurologist that specializes in neuropathy, and rather than wait until July, Jim can be seen on Monday.  I need you all to pray that I can get Jim there.  It's early in the morning, and Jim can't stand or sit, so, this is going to be tough.  So pray hard.

And as far as Jim's record, Andreas gathering all of those as well.  OH MY WORD, HOW THANKFUL I am.  I'm so very tired.

Hopefully Jim can get some relief.

prayer need

Unfortunately Jim's "doing a little better has not lasted."

Last night, we both thought he was going to his true home.  His entire nervous system in his whole body just started freaking out and he was twitching uncontrollably, legs stomach, chest, etc.  He started to weeze (sp).  I took his blood pressure, and it was something like 245/179.   A quick heart attack would have been a gentle way to go, I would think.  I don't know.

So, anyway, as I said the hospital did nothing for him.  Jim has an appointment with the best neurologist in town...in late June.  He's on a waiting list.  When Jim was released from the hospital, they said for him to make an appoint w/ a neurologist within a week.  The recommended the same neurologist.  I called and he couldn't get anything sooner.

Would you please pray that an opening occurs AND that I could get Jim in the car to take him there.  I don't know that the doctor can do anything, but at least we would know whether this is the rest of Jim's life, and...but I actually think we won't know a thing.  The docs are truly puzzled.  Even at the NIH.    We are back to me now doing his meds, pee bottles, and who knows.  I have no home nursing.  In fact my pee bottle is a large Tone's Cinnamon bottle.

So for those who like to know how to pray, now you know. 

US