My sister and I are Erie. The sun/beach has been wonderful. We have to head home early though. My hero of youth, my Fat Dad died yesterday.
Dolly
Tuesday, August 31, 2010
Thursday, August 26, 2010
Remember my neighbors???
Hi Everyone:
Remember last year when I had to call the cops on my neighbors for burning these huge bonfires that were stinking up the whole house and putting ash all over my car and such? Despite me and Jim talking to them 3 or 4 times, they just thumbed their nose, and well, I had to. Well, she yelled at me and called me names and such. Remember. Well, it's been 1.5 years since and they won't even look at us, except for maybe with disdain. Remember me mentioning all her plastic beauties...for instance, this:
I'm not sure what this does. It's about 3 feet high and crooked, etc. But there is that and the goose and silk, flowers, etc. Well, anyway, I've been just practicing loving them from afar. Even saying to myself, "Well, despite their ways not being my ways with all the plasticville, they are making their yard nice, and it's okay." There must be something special to her about that fence and well...
Anyway, they finally said something to us yesterday. Here's what they said. Look back at that photo. See the little thing on the left, another little plastic thingy. Look close... Can't see. Okay. Allow me to enhance it for you.
Okay, so this is what they said.
Is this tooooooooo funny or what? Oddly enough, at first I was a touch put out, and then Jim and I just laughed and laughed at their sillyness. I wanted to paint a sign for them and hang in on my greenhouse that said something like, "Jesus loves you, 'ass for us', we're working on it."
And I thought I was bitter. LOL.
Hey Bruce, if you accidentally cut their yard again, maybe you can mow his ass...um er, I mean grass.
Remember last year when I had to call the cops on my neighbors for burning these huge bonfires that were stinking up the whole house and putting ash all over my car and such? Despite me and Jim talking to them 3 or 4 times, they just thumbed their nose, and well, I had to. Well, she yelled at me and called me names and such. Remember. Well, it's been 1.5 years since and they won't even look at us, except for maybe with disdain. Remember me mentioning all her plastic beauties...for instance, this:
I'm not sure what this does. It's about 3 feet high and crooked, etc. But there is that and the goose and silk, flowers, etc. Well, anyway, I've been just practicing loving them from afar. Even saying to myself, "Well, despite their ways not being my ways with all the plasticville, they are making their yard nice, and it's okay." There must be something special to her about that fence and well...
Anyway, they finally said something to us yesterday. Here's what they said. Look back at that photo. See the little thing on the left, another little plastic thingy. Look close... Can't see. Okay. Allow me to enhance it for you.
Okay, so this is what they said.
Is this tooooooooo funny or what? Oddly enough, at first I was a touch put out, and then Jim and I just laughed and laughed at their sillyness. I wanted to paint a sign for them and hang in on my greenhouse that said something like, "Jesus loves you, 'ass for us', we're working on it."
And I thought I was bitter. LOL.
Hey Bruce, if you accidentally cut their yard again, maybe you can mow his ass...um er, I mean grass.
Tuesday, August 17, 2010
Pure Joy
James 1:2 - Consider it pure joy my brothers whenever you face trials of many kinds because you know that the testing of your faith develops perseverance, perseverance must finish its work so that "I" may be mature and complete, not lacking anything.
"Um, God, aside from that there little hissyfit the other day, I'm doing pretty good, don't you think? I'm mature, right? Right? Say it's so. Come on...
"Um, God, aside from that there little hissyfit the other day, I'm doing pretty good, don't you think? I'm mature, right? Right? Say it's so. Come on...
Monday, August 16, 2010
So, here's what's going on
Well, I have much to say, so will try and keep it informative, yet brief.
This trip was VERY HARD. On Jim and me. It seems with me, that every trip wears me out more and more. It's kind of cumulative. Often, I still feel like I haven't moved home yet from the 8 months that we lived down...at the lodge, the Hilton, the Hyatt, Bob and Shelley's, etc. As this type of thing continues.
This trip, I:
packed up from cottage with Jim sick
unpacked at home
packed for the NIH
rushed Jim to NIH
unpaced to Hilton for 1 night
Jim's admitted to hopt
packed and left Hilton
unpacked into the Lodge for 1 night
packed and left Lodge
unpacked to Bob and Shelley's for a few nights
packed and left Bob and Shelley's
unpacked into the Lodge for 1 night
unpacked to come home
packed Jim up
unpacked at home (Jim helped big time here)
This is just an example of what it is like when we go there for an acute issue. And that doesn't include eating out of vending machines, not knowing where I"m going sometimes until 4:00 p.m., driving, blah blah blah. I just can't do this anymore. And then come home and work my butt off. The doctors/counselor could see it on me, and so we had an appointment. This is the funny part and their help.
So, here's what they are suggesting. I drive Jim to the airport. Jim gets in a wheel chair and they wheel him to his airline. Flys to the NIH. Someone at the airport there, meets him with wheelchair. They take him to his luggage and to the NIH Shuttle. Jim Shuttles to the NIH. When he's done, he then takes the Shuttle to the Hotel Room. He then takes the Shuttle to the Airport, where he gets in a wheel chair...well, you get the picture. THIS IS SO LUDICROUS THAT I....oh forget it. OH WAIT...AND HE'S TO DO THIS EVERY 2 WEEKS. They want him down there every 2 weeks.
Here is what is up with Jim.
They believe it is only C-diff, and not GVHD of the gutt. And they treated him/are treating him for it. While treating him for that, they had to pump him up with dilauded because the GVHD medicine just causes the neuropathy pain to increase so much that he can't even bear it. So, as of now, the c-diff is still being treated for, and Jim is not taking any medicine to stop the GVHD. Maybe the GVHD will stop on its own. Maybe it will take over. We don't know.
This trip was VERY HARD. On Jim and me. It seems with me, that every trip wears me out more and more. It's kind of cumulative. Often, I still feel like I haven't moved home yet from the 8 months that we lived down...at the lodge, the Hilton, the Hyatt, Bob and Shelley's, etc. As this type of thing continues.
This trip, I:
packed up from cottage with Jim sick
unpacked at home
packed for the NIH
rushed Jim to NIH
unpaced to Hilton for 1 night
Jim's admitted to hopt
packed and left Hilton
unpacked into the Lodge for 1 night
packed and left Lodge
unpacked to Bob and Shelley's for a few nights
packed and left Bob and Shelley's
unpacked into the Lodge for 1 night
unpacked to come home
packed Jim up
unpacked at home (Jim helped big time here)
This is just an example of what it is like when we go there for an acute issue. And that doesn't include eating out of vending machines, not knowing where I"m going sometimes until 4:00 p.m., driving, blah blah blah. I just can't do this anymore. And then come home and work my butt off. The doctors/counselor could see it on me, and so we had an appointment. This is the funny part and their help.
So, here's what they are suggesting. I drive Jim to the airport. Jim gets in a wheel chair and they wheel him to his airline. Flys to the NIH. Someone at the airport there, meets him with wheelchair. They take him to his luggage and to the NIH Shuttle. Jim Shuttles to the NIH. When he's done, he then takes the Shuttle to the Hotel Room. He then takes the Shuttle to the Airport, where he gets in a wheel chair...well, you get the picture. THIS IS SO LUDICROUS THAT I....oh forget it. OH WAIT...AND HE'S TO DO THIS EVERY 2 WEEKS. They want him down there every 2 weeks.
Here is what is up with Jim.
They believe it is only C-diff, and not GVHD of the gutt. And they treated him/are treating him for it. While treating him for that, they had to pump him up with dilauded because the GVHD medicine just causes the neuropathy pain to increase so much that he can't even bear it. So, as of now, the c-diff is still being treated for, and Jim is not taking any medicine to stop the GVHD. Maybe the GVHD will stop on its own. Maybe it will take over. We don't know.
Saturday, August 14, 2010
we are home
from my book today
Friday, August 13, 2010
The Thwarter
It seems at times that God will go to any length to thwart the very thing we most deeply want. We can't get a job. Our attempt to find a spouse never pans out. The doctors aren't able to help us with our infertility. Isn't this precisely the reason we fear to desire in the first place? Life is hard enough as it is, but to think that God himself is working against us is more than disheartening. As Job cried out, "What do you gain by oppressing me? . . . You hunt me like a lion and display your awesome power against me" (10:3, 16 NLT).
I want to state very clearly that not every trial in our life is specially arranged for us by God. Much of the heartache we know comes from living in a broken world filled with broken people. But there are times when God seems to be set against us. Unless we understand our desperate hearts and our incredible tenacity to arrange for the life we want, these events will just seem cruel.
When we lived in Eden, there was virtually no restriction on the pleasure around us. We could eat freely from any tree in the Garden. Our desire was innocent and fully satisfied. We had it all, but we threw it away. By mistrusting God's heart, by reaching to take control of what we wanted, Adam and Eve set in motion a process in our hearts, a desperate grasping that can be described only as addiction. Desire goes mad within us. Gerald May observes, "Once they gave in to that temptation, their freedom was invaded by attachment. They experienced the need for more. God knew that they would not-could not-stop with just the one tree."
Our first parents are banished from Paradise as an act of mercy. The thought of the human race gaining immortality-eating from the Tree of Life-in a fallen state is too horrible to imagine. We would be evil forever.
Amen Amen.
Wednesday, August 11, 2010
Jim's phone
1-301-451-3267
Not sure if that was Tom Jr or Sr, but it doesn't matter. He's very lonely.
I am at Bob & Shelley's. They are camping. Rege is here. Rege cooked me dinner. What a guy. He's a Colonel in the Air Force now. I said, what are you now, a corporal? LOL. I'm lame. Why isn't there an "r" in Colonel.
The guys showed up to do our two chimneys. PLEASE PRAY THEY DO IT WELL. It costing us a heck of a lot of money to finally get them fixed and stop a leak in our dining room, and it's hot and I don't want our new roof hurt, and we're not there to make sure they are doing a nice job. He sounds like a nice guy though. A really nice guy. I hate to pay for 2 chimneys to be repaired, and we can't even burn a fire. Dumb.
I wish I had known that Jim would be admitted this long. I would have went home.
Amy, thanks for the invite. Next time, I will call you. I am 1.5 hours away from the NIH where I am at now, so it would be fun to hook up with you next time. I am lonely, too.
This journey has been a lonely one. But not one in which I feel alone. So, there's the difference.
Jim may have to go off the GVHD meds. They just increase the pain in his legs too too much. He still has c-diff, if it hasn't changed to GVHD of the gut by now. But they aren't going to scope him. I'm surprised, but they certainly know more than we know.
I sure miss home. I have missed it for 1.6 years now. I have missed Jim for 3.2 years now. Jim has missed life for 3.4 years now. That's how long the insanity has been going on.
Not sure if that was Tom Jr or Sr, but it doesn't matter. He's very lonely.
I am at Bob & Shelley's. They are camping. Rege is here. Rege cooked me dinner. What a guy. He's a Colonel in the Air Force now. I said, what are you now, a corporal? LOL. I'm lame. Why isn't there an "r" in Colonel.
The guys showed up to do our two chimneys. PLEASE PRAY THEY DO IT WELL. It costing us a heck of a lot of money to finally get them fixed and stop a leak in our dining room, and it's hot and I don't want our new roof hurt, and we're not there to make sure they are doing a nice job. He sounds like a nice guy though. A really nice guy. I hate to pay for 2 chimneys to be repaired, and we can't even burn a fire. Dumb.
I wish I had known that Jim would be admitted this long. I would have went home.
Amy, thanks for the invite. Next time, I will call you. I am 1.5 hours away from the NIH where I am at now, so it would be fun to hook up with you next time. I am lonely, too.
This journey has been a lonely one. But not one in which I feel alone. So, there's the difference.
Jim may have to go off the GVHD meds. They just increase the pain in his legs too too much. He still has c-diff, if it hasn't changed to GVHD of the gut by now. But they aren't going to scope him. I'm surprised, but they certainly know more than we know.
I sure miss home. I have missed it for 1.6 years now. I have missed Jim for 3.2 years now. Jim has missed life for 3.4 years now. That's how long the insanity has been going on.
Tuesday, August 10, 2010
Saturday, August 7, 2010
c-diff so far
Hi everyone:
Well, I got stay at the lodge last night. They only had a cancellation for one night. No more room until Friday. So, I am heading down to Shelley and Bob's house. They are the ones we stayed with when Jim had his stem cell transplant. They are camping and their Brother Rege is living there while working at the Pentegon. It's a l.5 hour drive, but better than the lounge chair at the hopt.
So far Jim has c-diff. Not sure if gvhd helped to cause it, or if all the antibiotics he's on caused it, or if the c-diff will cause gvhd of the gut. It's very complicated, but there it is simple.
I'm not dizzy anymore, but I do have a terrible headache, so I'm off to find some bufferin, the only thing that helps.
Agnes, HELLO to you. Agnes responded to my last post. She also is a stem cell survivor, with a much better story to tell. You are right, the lodge is sooooo convenient, but it's terribly filled these days, according to Heather.
Anyway, don't forget, I DON'T HAVE ACCESS TO MY E-MAIL WHILE I AM AWAY. AND JIM'S CELL PHONE DOES NOT GET RECEPTION IN THE HOPT. I guess that's mainly for Bill since he's the one who calls Jim. So, BILL, HEADS UP.
Well, I got stay at the lodge last night. They only had a cancellation for one night. No more room until Friday. So, I am heading down to Shelley and Bob's house. They are the ones we stayed with when Jim had his stem cell transplant. They are camping and their Brother Rege is living there while working at the Pentegon. It's a l.5 hour drive, but better than the lounge chair at the hopt.
So far Jim has c-diff. Not sure if gvhd helped to cause it, or if all the antibiotics he's on caused it, or if the c-diff will cause gvhd of the gut. It's very complicated, but there it is simple.
I'm not dizzy anymore, but I do have a terrible headache, so I'm off to find some bufferin, the only thing that helps.
Agnes, HELLO to you. Agnes responded to my last post. She also is a stem cell survivor, with a much better story to tell. You are right, the lodge is sooooo convenient, but it's terribly filled these days, according to Heather.
Anyway, don't forget, I DON'T HAVE ACCESS TO MY E-MAIL WHILE I AM AWAY. AND JIM'S CELL PHONE DOES NOT GET RECEPTION IN THE HOPT. I guess that's mainly for Bill since he's the one who calls Jim. So, BILL, HEADS UP.
Friday, August 6, 2010
Feel like Mary and Joseph
Pray also that the is a cancellation at the Lodge (not likely, so pray heavy). There is no room at the lodge until next Friday, so I'm homeless until then.
I am sitting in a relatively comfy chair right now which is going to be my home until something changes, so pray, cause this chair won't be that comfy for that long.
me
I am sitting in a relatively comfy chair right now which is going to be my home until something changes, so pray, cause this chair won't be that comfy for that long.
me
Samuel
I was listening to Samuel on the way down to the NIH yesterday, and then a nice praise CD. I'm always reticent to share what I feel the Lord is laying on my heart because I know that as a member of the female species, I can get "emotional." (shut up guys)
Anyway, I felt the Lord was telling me Jim's suffering (which we all know is for the good of him, me and who knows who else, because God is good--despite my "confusion" of that at times-lol--) is for such a time as these, and it will end and Jim will be okay." So, there it is.
One caveat though (is that the word I should use here?) I'm no prophet.
Pray for me. Took me 3 hours to get out of hotel room because of vertigo. Still a bit dizzy and nausious. One never wants to be a bit dizzy when driving around DC area. YIKES!!!
Anyway, I felt the Lord was telling me Jim's suffering (which we all know is for the good of him, me and who knows who else, because God is good--despite my "confusion" of that at times-lol--) is for such a time as these, and it will end and Jim will be okay." So, there it is.
One caveat though (is that the word I should use here?) I'm no prophet.
Pray for me. Took me 3 hours to get out of hotel room because of vertigo. Still a bit dizzy and nausious. One never wants to be a bit dizzy when driving around DC area. YIKES!!!
Thursday, August 5, 2010
Going to the NIH
How many times have I typed that now.
Well, Jim woke up desperate, pretty much. He called his brother in tears. I paged the PA at the NIH, and we have to go down there, and they will probably admit him. I have a feeling this could be a long one.
Please pray for us.
Well, Jim woke up desperate, pretty much. He called his brother in tears. I paged the PA at the NIH, and we have to go down there, and they will probably admit him. I have a feeling this could be a long one.
Please pray for us.
Wednesday, August 4, 2010
GVHD of the body
Well, we're still home. I just couldn't go. I just couldn't do it. I feel like I still can't. I just can't handle it anymore.
We may have to go down tomorrow or Friday. They want to bio Jim's stomach. They think he has cGVHD of the gut. I have been concerned about this for 3 months, but no one would listen to me. Not even Jim. I hope it's not that. If so, it's possible that it can even get worse. IS THAT EVEN POSSIBLE??????
NO, I DON'T THINK IT IS.
It's amazing that most of our discussions are about heaven. God has made it so real to us. We no longer talk about a trip out west or whatever. We talk about heaven.
I know I posted this before, so this is for me again to remember, but 2 Corinthians 4:7-18 says we have this tresure in jars of clay to show that this....
So, while we are hard-pressed, perplexed, persecuted, struck down and carry around in our body the death of Jesus, and we outwardly are wasting away, we have troubles and out eyes have a tendency to stay stuck in seeing what is in front of us,
God still empowers us to handle this life(well, usually, just not fully this week)
we are not crushed
not in despair (well, not all the time, anyway)
are not abandoned (well, by many people, yes, but not by God)
and are not destroyed
we hope "the life of Jesus is revealed in our body"
inwardly we are renewed daily (well, that needs tweaking)
these troubles are light and momentary (long moment tho)
WE HAVE TO FIX OUR EYES ON WHAT IS NOT SEEN --heaven--
and here is my fave part of it
"Our troubles are achieving for us an eternal glory that outweighs these troubles."
Thank you Jesus.
We may have to go down tomorrow or Friday. They want to bio Jim's stomach. They think he has cGVHD of the gut. I have been concerned about this for 3 months, but no one would listen to me. Not even Jim. I hope it's not that. If so, it's possible that it can even get worse. IS THAT EVEN POSSIBLE??????
NO, I DON'T THINK IT IS.
It's amazing that most of our discussions are about heaven. God has made it so real to us. We no longer talk about a trip out west or whatever. We talk about heaven.
I know I posted this before, so this is for me again to remember, but 2 Corinthians 4:7-18 says we have this tresure in jars of clay to show that this....
So, while we are hard-pressed, perplexed, persecuted, struck down and carry around in our body the death of Jesus, and we outwardly are wasting away, we have troubles and out eyes have a tendency to stay stuck in seeing what is in front of us,
God still empowers us to handle this life(well, usually, just not fully this week)
we are not crushed
not in despair (well, not all the time, anyway)
are not abandoned (well, by many people, yes, but not by God)
and are not destroyed
we hope "the life of Jesus is revealed in our body"
inwardly we are renewed daily (well, that needs tweaking)
these troubles are light and momentary (long moment tho)
WE HAVE TO FIX OUR EYES ON WHAT IS NOT SEEN --heaven--
and here is my fave part of it
"Our troubles are achieving for us an eternal glory that outweighs these troubles."
Thank you Jesus.
Monday, August 2, 2010
home sweet home... no wait...
Hi Everyone:
Well, we sure enjoyed the fellowship with Joe and Mary Jo. Our hearts needed/need that. And it was fun. The day they left though, all heck broke loose. Our other tractor we just brought to the cottage developed problems, the lawnmower we brought up there this year developed problems and Jim developed problems. He got a temperature of 101 at night. Is that the cancer temp? Lung problem temp? Infection temp? Who knows. The next day, he was feeling a bit better. That night, just a small temp 99. Then the next day he was feeling okay, slight temp, at night and then this morning, as I'm packing to come home, he has a 101 temp. Called the NIH, and they wanted us to come straight down there. I just can't do it. I'm beat. So, they want us to come tomorrow. I don't think I can do that either. I just don't think I can do any of this anymore. I am just too tired.
Hey, John, any chance of Leah doing those interns in Pgh like you said was possible last year? I sure could use the help. I guess that's not going to happen considering you got a new job, huh?
I don't know folks. I have 12 phone calls, all of them are problems that I need to work out. I have to pay our bills for August. And going down there, probably means Jim would be admitted. I pray God intervenes. It's funny. I finally got to this place where I rest in the Lord and am not afraid of the future or of when Jim gets a temp or a pain, but at the same time, I no longer can bring myself to entertain the insanity that I have lived for the past 3 years and allow more chaos to come in.
Someone better pray along with me because there needs to be a miracle, and it needs to be now. I'm that tired.
And we didn't even get to fish again...
Well, we sure enjoyed the fellowship with Joe and Mary Jo. Our hearts needed/need that. And it was fun. The day they left though, all heck broke loose. Our other tractor we just brought to the cottage developed problems, the lawnmower we brought up there this year developed problems and Jim developed problems. He got a temperature of 101 at night. Is that the cancer temp? Lung problem temp? Infection temp? Who knows. The next day, he was feeling a bit better. That night, just a small temp 99. Then the next day he was feeling okay, slight temp, at night and then this morning, as I'm packing to come home, he has a 101 temp. Called the NIH, and they wanted us to come straight down there. I just can't do it. I'm beat. So, they want us to come tomorrow. I don't think I can do that either. I just don't think I can do any of this anymore. I am just too tired.
Hey, John, any chance of Leah doing those interns in Pgh like you said was possible last year? I sure could use the help. I guess that's not going to happen considering you got a new job, huh?
I don't know folks. I have 12 phone calls, all of them are problems that I need to work out. I have to pay our bills for August. And going down there, probably means Jim would be admitted. I pray God intervenes. It's funny. I finally got to this place where I rest in the Lord and am not afraid of the future or of when Jim gets a temp or a pain, but at the same time, I no longer can bring myself to entertain the insanity that I have lived for the past 3 years and allow more chaos to come in.
Someone better pray along with me because there needs to be a miracle, and it needs to be now. I'm that tired.
And we didn't even get to fish again...
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