I don't have a lot to add. But primarily say "thanks." It seems like most people that I talk to are impressed with the progress that I've made. So, I wanted to say "yes, I am coming along quite well. And, thank you all for your prayers."
I can now:
- Button my jeans
- tie my shoes
- pick up cards / papers
- use two-handed tools (ie. rake/shovel)
- wash dishes (I did break one though)
- and last but not least, Saturday night I played a few chords on guitar.
(nowhere near ready to play at the Fillmore East, but it's a start.)
So those are some big milestones I wanted to share and again, say "thanks".
I go back to Clev. on Monday. Hopefully, This whole thing ends right there.
Tony
Showing posts with label cleveland. Show all posts
Showing posts with label cleveland. Show all posts
Tuesday, March 30, 2010
Tuesday, January 12, 2010
Hey All
It's been a somewhat crazy time for us, but it's been pretty great too.(...pretty great? Does that work?) I started at BRG Inc, in Bloomington, IN on 01/04/2010. So far I really like the place they have good jobs, good people, and an easy going atmosphere.
As far as the twitchin' goes, I still haven't had any problems since I left the hospital in early December. Pretty good(or great?) right? So assuming that holds up, I'll be working until we leave for Cleveland on 2/17. All good things. (accent on things) All good things. (accent on good)
So, please keep prayin'. We're doing well. I don't know that I have any needs so much as just if anything comes to mind. Lift it up.
Gotta run, lunch is over.
Tony
As far as the twitchin' goes, I still haven't had any problems since I left the hospital in early December. Pretty good(or great?) right? So assuming that holds up, I'll be working until we leave for Cleveland on 2/17. All good things. (accent on things) All good things. (accent on good)
So, please keep prayin'. We're doing well. I don't know that I have any needs so much as just if anything comes to mind. Lift it up.
Gotta run, lunch is over.
Tony
Saturday, September 26, 2009
Round 3...
Titled for a couple reasons. 1, this was our third trip to C-Clinic. 2, This is the 3rd time I've tried to write this post. Either, distraction or DSL failure have gotten in the way before. Let's move on.
As you've read in previous post, we took off on Wednesday, had our appointments on Thursday, drove home Thursday-night picked up the kid / dog Friday and now you have a time line.
For the sake of not boring the crap out of you(But still no promises), we're only going to talk about Thursday. We arrived at the clinic around noon. BTW, calling this place a "clinic" is retarded. The word "clinic" makes me think of the show Becker, or maybe the emergency care clinic that's often part of a strip mall. Still, perhaps I should be cautious with the word "retarded" as I'm frequenting neurologists. It's bigger than any hospital, I've ever seen. Bigger than a community college. I dunno, maybe even a small D1 school. Sorry, back to not boring the crap out of you. 1st appointment was at 1pm with Dr. Gonzalez. He's my Neurosurgeon. Yup...Neurosurgeon. He will be preforming my SEEG.
The SEEG
This conversation was both calming, and nerve-racking. He was able to explain how low the probability of any complications are, but he was very detailed in what could go wrong. #1 concern, hitting a blood vessel and causing a "bleed". The size and location of the bleed determine the outcome / consequences. #2 - an infection. When was the last time you heard this, "Oh, I'd love to, but this brain infection is killing me."? I know bad choice of words. #3 - Hitting, clipping or crimping a vessel. That means stroke.
So, There you go. That's the bad news, here's the good. Concern #1 has a .05% chance of happening. They only go down from there. He is very positive about the result of the SEEG. He also seems to be optimistic for the extraction. Also good. He give a little higher #'s than Hantus did. I suppose he can be a bit more accurate, 'cause hes doing the work. More good news: We were told that we'd have to wait until Feb. for this SEEG. While we were waiting for the Dr. in our little holding pen, they got a spot or someone canceled or something, so right now we're scheduled for 11/23. They also said the would move that date up if they could.
On to the good stuff. The SEEG is a little different than I understood. Instead of two electrodes, there will be up to 16. Oy. He said "...you can compare them to spaghetti noodles". They are about the same size (2mm), but don't stick to the wall when cooked. After every thing is well placed in my head, I'll be wrapped up and sent to recovery for a short time. Then, on the Epilepsy Monitoring Unit. I'm sure those nurses can't wait to get me back. Anyway, much the same story as before, stay till ya twitch. They want about 5 this time. That's a bit frighting to me. But, I know they can stop the twitchin' at any time. All it takes is a little bit of IV happy sauce.
So let's say they get their 5. Now we wait. At best, they have everything they need and schedule a resection. Which is what Dr. Gonzales says is most probable. If that's the case we wait two months for my head to recover, before break out the exact-o knives. Second possibility, didn't get what we needed, so we need to replace the spaghetti (electrodes). The same two months apply here. Third, everything worked, we see it clearly and know where it and your motor functions are, but know it's decision time. "How much do you really use your left hand"?(leg, butt-cheek, whatever)
Yea, so, there it is. In all it's complicated, intense, gory, wonder. That's about it.
Oh yea, the we had a FMRI done that took about an hour. It's basically your standard run of the mill MRI but then you get instructions. It measures the increase in blood to areas of the brain to preform functions. After that we left and got home around 11:30p. Long day. Sorry for the novel. I'll try to keep it shorter next time.
As is standard fare for us right now, we continue to be greeted by people that are praying for us. That's great. Thank you all for all of you prayers.
Tony and fam.
As you've read in previous post, we took off on Wednesday, had our appointments on Thursday, drove home Thursday-night picked up the kid / dog Friday and now you have a time line.
For the sake of not boring the crap out of you(But still no promises), we're only going to talk about Thursday. We arrived at the clinic around noon. BTW, calling this place a "clinic" is retarded. The word "clinic" makes me think of the show Becker, or maybe the emergency care clinic that's often part of a strip mall. Still, perhaps I should be cautious with the word "retarded" as I'm frequenting neurologists. It's bigger than any hospital, I've ever seen. Bigger than a community college. I dunno, maybe even a small D1 school. Sorry, back to not boring the crap out of you. 1st appointment was at 1pm with Dr. Gonzalez. He's my Neurosurgeon. Yup...Neurosurgeon. He will be preforming my SEEG.
The SEEG
This conversation was both calming, and nerve-racking. He was able to explain how low the probability of any complications are, but he was very detailed in what could go wrong. #1 concern, hitting a blood vessel and causing a "bleed". The size and location of the bleed determine the outcome / consequences. #2 - an infection. When was the last time you heard this, "Oh, I'd love to, but this brain infection is killing me."? I know bad choice of words. #3 - Hitting, clipping or crimping a vessel. That means stroke.
So, There you go. That's the bad news, here's the good. Concern #1 has a .05% chance of happening. They only go down from there. He is very positive about the result of the SEEG. He also seems to be optimistic for the extraction. Also good. He give a little higher #'s than Hantus did. I suppose he can be a bit more accurate, 'cause hes doing the work. More good news: We were told that we'd have to wait until Feb. for this SEEG. While we were waiting for the Dr. in our little holding pen, they got a spot or someone canceled or something, so right now we're scheduled for 11/23. They also said the would move that date up if they could.
On to the good stuff. The SEEG is a little different than I understood. Instead of two electrodes, there will be up to 16. Oy. He said "...you can compare them to spaghetti noodles". They are about the same size (2mm), but don't stick to the wall when cooked. After every thing is well placed in my head, I'll be wrapped up and sent to recovery for a short time. Then, on the Epilepsy Monitoring Unit. I'm sure those nurses can't wait to get me back. Anyway, much the same story as before, stay till ya twitch. They want about 5 this time. That's a bit frighting to me. But, I know they can stop the twitchin' at any time. All it takes is a little bit of IV happy sauce.
So let's say they get their 5. Now we wait. At best, they have everything they need and schedule a resection. Which is what Dr. Gonzales says is most probable. If that's the case we wait two months for my head to recover, before break out the exact-o knives. Second possibility, didn't get what we needed, so we need to replace the spaghetti (electrodes). The same two months apply here. Third, everything worked, we see it clearly and know where it and your motor functions are, but know it's decision time. "How much do you really use your left hand"?(leg, butt-cheek, whatever)
Yea, so, there it is. In all it's complicated, intense, gory, wonder. That's about it.
Oh yea, the we had a FMRI done that took about an hour. It's basically your standard run of the mill MRI but then you get instructions. It measures the increase in blood to areas of the brain to preform functions. After that we left and got home around 11:30p. Long day. Sorry for the novel. I'll try to keep it shorter next time.
As is standard fare for us right now, we continue to be greeted by people that are praying for us. That's great. Thank you all for all of you prayers.
Tony and fam.
Thursday, September 24, 2009
Alllrightythen... (continued)
OK, not so rushed now. I'm sitting in my hotel room enjoying the dim luminance produced by by Dave's laptop. That does not mean that Dave is here, it means he's kind enough to share is toys. But I digress...
Speaking of which, as I've read over some of my posts, It becomes apparent that my grammar / spelling is not the best. Too bad. Amanda and others have pointed it out to me, but to be honest, its sort of a by product of the amount of drugs, the fact that I usually post when somethings going on, so I'm tense, and I'm still not good with a lappy keyboard. However, I don't plan on getting an editor anytime soon.
So where was I? Oh yes, right now we're on the North side of Columbus, about 2.25 hrs. out from the clinic. and our first appointment is at 1pm. So tomorrow, we'll get up and enjoy a easygoing morning, check out, and be on our way.
Just to keep current we have a meeting with the surgeon at 1p, and the FMRI at 2:30p. We should know results in about a week.
Type @ ya soon,
Tony
Speaking of which, as I've read over some of my posts, It becomes apparent that my grammar / spelling is not the best. Too bad. Amanda and others have pointed it out to me, but to be honest, its sort of a by product of the amount of drugs, the fact that I usually post when somethings going on, so I'm tense, and I'm still not good with a lappy keyboard. However, I don't plan on getting an editor anytime soon.
So where was I? Oh yes, right now we're on the North side of Columbus, about 2.25 hrs. out from the clinic. and our first appointment is at 1pm. So tomorrow, we'll get up and enjoy a easygoing morning, check out, and be on our way.
Just to keep current we have a meeting with the surgeon at 1p, and the FMRI at 2:30p. We should know results in about a week.
Type @ ya soon,
Tony
Wednesday, September 23, 2009
Alllrightythen...
So the short story is we got a call from Cleveland saying, "hey, we're down a tech, so if you want to do the FMRI this year better get up here. So after a brief nightmare with schedulers, we're on our way out of town at around 7:45p staying the night half way and then we have two apts. midday tomorrow.
Wish us luck gotta run.
Tony
Wish us luck gotta run.
Tony
Wednesday, September 16, 2009
And there's the flop
That not twichin' reference, or even a city pool reference, it's a poker reference.
After we got news of from the Doc, we were driving back home. Amanda was concerned that I was "not OK". So I made this analogy, Some will understand it some won't.
In Texas hold 'em, you get a couple cards, and the game starts. That's where we've been since... along time. You look at you cards, you try to be optomistic, but really you have no idea what hand you have. I'll forgo the wagering aspects. next comes "the flop". Three card are placed on face-up on the table shared by all in the game. We now have a full 5 card hand. the only uncertainty are the next two cards to come up. They can help. They can help, they can hurt, but I pretty much know what odds are.
OK, as I type that it sounds a bit dramatic. But, that where we are. The Cleveland clinic did a great job with their testing. They learned 10 times more in a week than in... ever... anywhere... all put together.
But, since they can see the legion, see the epileptogenic zone(EZ), know where motor functions are located, they know the risk. And here it is, 10% - 25% of having a weakened left hand. Doc was very clear that he can only speak in generalities. The numbers are general, the term "weakened" is general. Sometimes it happens and people "remap" and regain the function. No numbers for that. So that's the bad news, sort of "ripping off the band-aid" style.
Here's the good news. He can get it! The EZ that is. The EZ is where the seizures are emanating from and it is directly adjacent to the legion. For the sake of more general numbers, 50%-60% of never having another seizure. That jumps to around the 90% area if you change it to having far less, and less sever seizures. He will also get the legion but is not sure he can get all of it. The legion is sort of an indirect culprit. It's a very small area that just formed incorrectly (I guess my sister was right) and will not metabolize food. So now it's basically dead. Interesting tidbit, your brain is the consistency of jello. That legion is more like potato.
So that's an overview of the good and bad news, on to plan of action. I have so the we have a better idea of how close the regions are to on another, we're going to do some more testing. I know, I know... I'm shocked too. regardless, first up is a functional MRI (FMRI) currently scheduled for 10/14. They are trying to move that up for me. On the same day, I will have a consultation with the surgeon. He wil most likly first preform a stereo EEG (SEEG). I know the link says "childrens", but doc gave me the same info and #'s so it should explain well for you.
That leads me back to the top. The result from over a week of monitoring, and a crap load of testing turns up "the flop" To come, FIRM - "the turn", SEEG - "the river". It's getting to be an increasingly high stakes game. And I dunno I guess the "the flop" if you will, sort of jerked the cavalier approach to the whole thin into perspective. At some point I'm either going to have to fold, or go all in, and of course live with the consequences.
This is not my most up lifting post, so I'll let it go where it is. I'll remind you-all and myself the the goal was to be informative, honest & transparent. So I guess I don't have a motivational blog. Whatever.
We're still here, glad to have you-all, your prayers, your help and encouragement.
Gimme a couple days and I'll put up some more stuff. In the mean time, if you have Q's let me know and I'll answer them the best I can.
Tony
After we got news of from the Doc, we were driving back home. Amanda was concerned that I was "not OK". So I made this analogy, Some will understand it some won't.
In Texas hold 'em, you get a couple cards, and the game starts. That's where we've been since... along time. You look at you cards, you try to be optomistic, but really you have no idea what hand you have. I'll forgo the wagering aspects. next comes "the flop". Three card are placed on face-up on the table shared by all in the game. We now have a full 5 card hand. the only uncertainty are the next two cards to come up. They can help. They can help, they can hurt, but I pretty much know what odds are.
OK, as I type that it sounds a bit dramatic. But, that where we are. The Cleveland clinic did a great job with their testing. They learned 10 times more in a week than in... ever... anywhere... all put together.
But, since they can see the legion, see the epileptogenic zone(EZ), know where motor functions are located, they know the risk. And here it is, 10% - 25% of having a weakened left hand. Doc was very clear that he can only speak in generalities. The numbers are general, the term "weakened" is general. Sometimes it happens and people "remap" and regain the function. No numbers for that. So that's the bad news, sort of "ripping off the band-aid" style.
Here's the good news. He can get it! The EZ that is. The EZ is where the seizures are emanating from and it is directly adjacent to the legion. For the sake of more general numbers, 50%-60% of never having another seizure. That jumps to around the 90% area if you change it to having far less, and less sever seizures. He will also get the legion but is not sure he can get all of it. The legion is sort of an indirect culprit. It's a very small area that just formed incorrectly (I guess my sister was right) and will not metabolize food. So now it's basically dead. Interesting tidbit, your brain is the consistency of jello. That legion is more like potato.
So that's an overview of the good and bad news, on to plan of action. I have so the we have a better idea of how close the regions are to on another, we're going to do some more testing. I know, I know... I'm shocked too. regardless, first up is a functional MRI (FMRI) currently scheduled for 10/14. They are trying to move that up for me. On the same day, I will have a consultation with the surgeon. He wil most likly first preform a stereo EEG (SEEG). I know the link says "childrens", but doc gave me the same info and #'s so it should explain well for you.
That leads me back to the top. The result from over a week of monitoring, and a crap load of testing turns up "the flop" To come, FIRM - "the turn", SEEG - "the river". It's getting to be an increasingly high stakes game. And I dunno I guess the "the flop" if you will, sort of jerked the cavalier approach to the whole thin into perspective. At some point I'm either going to have to fold, or go all in, and of course live with the consequences.
This is not my most up lifting post, so I'll let it go where it is. I'll remind you-all and myself the the goal was to be informative, honest & transparent. So I guess I don't have a motivational blog. Whatever.
We're still here, glad to have you-all, your prayers, your help and encouragement.
Gimme a couple days and I'll put up some more stuff. In the mean time, if you have Q's let me know and I'll answer them the best I can.
Tony
Wednesday, September 9, 2009
Yup, I made it home.
I guess they had enough of me. The CCF finally sent me packin'. I stayed there for a little over a week and that was plenty. I don't ever want to do that again. ...until next week. That's right, I'm planning a return trip. This one shouldn't be as bad though. As I understand it, We're headed up there to discuss options with my Dr. after he gets out of a physicians conference. All of the Doc's (Neuro., Pshyc., Surgeon, even the intern) are gonna sit in a room and review charts, films of my head, vidoes of me twitchin', and then they're gonna say here are your choices. "A,B, or C"
I wonder what they'll say? or offer?
"Tony I can remove that with .006% chance of complications."
"Tony I feel if I remove half of the material affected you will have no further problems."
"Tony I would remove the problematic tissue, but then you'd only speak Portuguese."
"Tony, if you climb the tallest hill and reach the furthest tree, there you will see the smallest walnut which has rolled the greatest length from the tree. Eat this and you will be healed."
I wouldn't put any money on the last one. It's just an illustration to show how little I know of what to expect. Of course everything is still under our control. It's our decision to make. It's somehow to comforting know that I can go right back to the way things were.
Anyway, I have a short week here at the house. As always you prayers are appreciated. I'll get a few things done and then I'll be off again. I may be gone overnight. It may be for a hospital stay. I'm just not sure yet. I guess we'll know soon enough.
T
I wonder what they'll say? or offer?
"Tony I can remove that with .006% chance of complications."
"Tony I feel if I remove half of the material affected you will have no further problems."
"Tony I would remove the problematic tissue, but then you'd only speak Portuguese."
"Tony, if you climb the tallest hill and reach the furthest tree, there you will see the smallest walnut which has rolled the greatest length from the tree. Eat this and you will be healed."
I wouldn't put any money on the last one. It's just an illustration to show how little I know of what to expect. Of course everything is still under our control. It's our decision to make. It's somehow to comforting know that I can go right back to the way things were.
Anyway, I have a short week here at the house. As always you prayers are appreciated. I'll get a few things done and then I'll be off again. I may be gone overnight. It may be for a hospital stay. I'm just not sure yet. I guess we'll know soon enough.
T
Sunday, August 30, 2009
T-22
Count down to insanity. So here we go. Amanda's in the other room putting makup on. I'm on the computer putting out the last blog from my home PC. Shortly, We'll be packing all of our well pack and planed bags into the car and hitting the road. It's 10 O'colck. 22 hours till the first appointment of the whole fiasco.
I was talking to a several friends through the course of yesterday, and told him I was sort of in "the calm before the storm". now that we're about to get into the car, I feel a bit more stormy. Still calm, but stormy. Maybe It's an "eye of the storm" sort of thing. I dunno.
Anyway, I wanted to post this to say "We're off!" & again "Please pray". Everything is taken care of. Ella is Happily w/ G-ma & G-pa, the dog is with friends, the hose is taken care of(even clean), and we're ahead of schedule. Most importantly, we're rolling with God. Before I get to reflective, I'm gonna go.
Type at cha later,
Tony
I was talking to a several friends through the course of yesterday, and told him I was sort of in "the calm before the storm". now that we're about to get into the car, I feel a bit more stormy. Still calm, but stormy. Maybe It's an "eye of the storm" sort of thing. I dunno.
Anyway, I wanted to post this to say "We're off!" & again "Please pray". Everything is taken care of. Ella is Happily w/ G-ma & G-pa, the dog is with friends, the hose is taken care of(even clean), and we're ahead of schedule. Most importantly, we're rolling with God. Before I get to reflective, I'm gonna go.
Type at cha later,
Tony
Wednesday, August 26, 2009
Wow...
Has it really been two weeks since I've updated on here? I suppose so. Oh well, sorry. What can I tell you about the last to weeks? Man... It's been quite a ride. To tell you the truth not that much has happened, but just the enormity of what is happening and how close we're getting is starting to catch up to us. Along with that, just the ordinary pressures and strains of life, love, and godliness start to become pretty taxing. Ah well... Let it begin!
So back to Today, August the 26th. I've recently spoken with our scheduler at Cleveland. Asked her directly, "Do you still have us down for an 8/31 admission?".
And she does. "Are there any shortages I need to be aware of that could be a problem?". Believe it or not, she wanted to know why I asked. Of course, I explained the previous failure in a respectful manor. She assures me there's nothing to worry about. And yet, 5 days out, I worry. Something tells me this just wont be as smooth as it needs to be.
We'll see.
So we're starting to get ready for our "vacation". have people lined up for various things. Trying to meet with people as I can before I go. I feel like I'm running out of time. So, as this week comes to a close, if I don't manage to get you, I'm sorry.
I can think of a lot of folks that I really wanted to get in touch with before I left, but just sort of ran out of time. I don't know why, but I didn't see this time shortage coming.
This week, Ella is a major focus for Amanda and I. Last night we took her to the mall and just sort of let her do her own shopping. Which means we went to a little girls jewelry store, a candy shop, and we did a little shopping for a new outfit. Not much. Of course Dinner, and a Cinnabon as well. 'Cause there just wasn't enough sugar in the candy. Today... Chuck E. Cheese. "Where a kid can be a kid". And, where an adult can sit and have a very average cup of coffee if you go early enough. But she had a blast and we got to see some friends. Tomorrow night, dinner with Mimi (my mother) and who knows what else.
While I'm on the topic of Ella, We sent her heart monitor back! We had it for two months, and could never find an episode of her SVT. We asked frequently and I don't think she had any that we just didn't catch. So, that's awesome. We're probably done with that. Doc, didn't want to see her or have her take anything. Just sent the stupid monitor back. Great. Thank ya Jesus, and thank you all for your prayers.
More good news, while I'm at it. I think last post I said I was improving with my seizures. I seem to have kept that going. I haven't had any in... well probably since my last post. I think that's pretty good. I'll take it, and it does make it easier to think clearly and make rational decisions in these coming weeks.
Well I should post more often. It looks lik I ramble on if I wait too long.
I'll save the rest for later.
Tony
So back to Today, August the 26th. I've recently spoken with our scheduler at Cleveland. Asked her directly, "Do you still have us down for an 8/31 admission?".
And she does. "Are there any shortages I need to be aware of that could be a problem?". Believe it or not, she wanted to know why I asked. Of course, I explained the previous failure in a respectful manor. She assures me there's nothing to worry about. And yet, 5 days out, I worry. Something tells me this just wont be as smooth as it needs to be.
We'll see.
So we're starting to get ready for our "vacation". have people lined up for various things. Trying to meet with people as I can before I go. I feel like I'm running out of time. So, as this week comes to a close, if I don't manage to get you, I'm sorry.
I can think of a lot of folks that I really wanted to get in touch with before I left, but just sort of ran out of time. I don't know why, but I didn't see this time shortage coming.
This week, Ella is a major focus for Amanda and I. Last night we took her to the mall and just sort of let her do her own shopping. Which means we went to a little girls jewelry store, a candy shop, and we did a little shopping for a new outfit. Not much. Of course Dinner, and a Cinnabon as well. 'Cause there just wasn't enough sugar in the candy. Today... Chuck E. Cheese. "Where a kid can be a kid". And, where an adult can sit and have a very average cup of coffee if you go early enough. But she had a blast and we got to see some friends. Tomorrow night, dinner with Mimi (my mother) and who knows what else.While I'm on the topic of Ella, We sent her heart monitor back! We had it for two months, and could never find an episode of her SVT. We asked frequently and I don't think she had any that we just didn't catch. So, that's awesome. We're probably done with that. Doc, didn't want to see her or have her take anything. Just sent the stupid monitor back. Great. Thank ya Jesus, and thank you all for your prayers.
More good news, while I'm at it. I think last post I said I was improving with my seizures. I seem to have kept that going. I haven't had any in... well probably since my last post. I think that's pretty good. I'll take it, and it does make it easier to think clearly and make rational decisions in these coming weeks.
Well I should post more often. It looks lik I ramble on if I wait too long.
I'll save the rest for later.
Tony
Wednesday, August 12, 2009
Whaz-up which-U
So I had several people ask over the last few days, and I'll tell you. "I'm doing alright." That's not your standard "Pavlovian" response greeting/answer.
Male 1: Hey man, How ya doin'?
Male 2: Fine. How 'bout you?
Male 1: Ah, you know, I'm doin' alright.
How 'bout some tunes?
Not at all, In fact "alright" is an improvement over the last few weeks to be blunt. The last few weeks have been rough and I've counted my weeks in good nights as opposed to bad ones. However, this week we seem to be making a turn around. I've put a small string of seizure -free nights together, and the the nights that aren't, seem to be lighter. It's a good thing. So while I can't tell you that I've been miraculously healed, I feel as thought I'm improving.
With that in mind, I begin to become cautiously optimistic for the future and for Cleveland. Now that I have some control over my evenings/weeks it seems easier to get through this waiting period. 2.5 weeks isn't as daunting as it was before. A good thing.
A good example:
We were at a friends party for her 1 year-old. While there, we made plans to hope in the car the next day and go to Holiday World. That's pretty cool. Perhaps your family is spontaneous and this seems small, but this never happens around our place.
Regardless, we did it. It was exhausting, but an absolute blast! Ella will probably ask to go every weekend. So much fun. If you're an FB person than maybe you've seen photos, if not, here you go.
So, where was I? Oh yes... doin' alright.
I want to let you all know that I am in fact doin' alright. I could be better, but so could everyone else. So once again, I solicit your prayers, and am thankful for all the support offered/given.
I'll write you soon.
Tony
Male 1: Hey man, How ya doin'?
Male 2: Fine. How 'bout you?
Male 1: Ah, you know, I'm doin' alright.
How 'bout some tunes?
Not at all, In fact "alright" is an improvement over the last few weeks to be blunt. The last few weeks have been rough and I've counted my weeks in good nights as opposed to bad ones. However, this week we seem to be making a turn around. I've put a small string of seizure -free nights together, and the the nights that aren't, seem to be lighter. It's a good thing. So while I can't tell you that I've been miraculously healed, I feel as thought I'm improving.
With that in mind, I begin to become cautiously optimistic for the future and for Cleveland. Now that I have some control over my evenings/weeks it seems easier to get through this waiting period. 2.5 weeks isn't as daunting as it was before. A good thing.
A good example:
We were at a friends party for her 1 year-old. While there, we made plans to hope in the car the next day and go to Holiday World. That's pretty cool. Perhaps your family is spontaneous and this seems small, but this never happens around our place.
Regardless, we did it. It was exhausting, but an absolute blast! Ella will probably ask to go every weekend. So much fun. If you're an FB person than maybe you've seen photos, if not, here you go.
So, where was I? Oh yes... doin' alright.
I want to let you all know that I am in fact doin' alright. I could be better, but so could everyone else. So once again, I solicit your prayers, and am thankful for all the support offered/given.
I'll write you soon.
Tony
Wednesday, July 22, 2009
hey Hey HEY
How's everybody doing? It's been a while, so I thought I'd get back to it.
I was on the phone with a friend today and realized I haven't kept y'all up with current events. I have settled down a bit, so here's a more reasonable walk through of what's goin' on. (can you hear Marvin Gaye in the back ground?)
The new time line is pretty much the same as the first except it begins on August 31th. So essentially, I got pushed back about two months. A few other changes are apparent this time around. In round two, we are getting paperwork that tells us our admission date should be considered tentative. Hmmm... how interesting. More specificaly, they say "we will let you know 1-2 day ahead of you admission if there is a change". Well, we'll be a bit more proactive than that.
Also, the schedule includes time for surgery. Now this is a surprising change from before. I wonder if it to is subject to the rescheduling due to... whatever. Just to be clear, no surgery is planned, just scheduled. Not sure what that means. I guess I've got a block of time reserved.
Anyway, now you're up to date. I'll get back soon with more.
As always, please keep the prayers coming.
Thanks,
Tony
I was on the phone with a friend today and realized I haven't kept y'all up with current events. I have settled down a bit, so here's a more reasonable walk through of what's goin' on. (can you hear Marvin Gaye in the back ground?)
The new time line is pretty much the same as the first except it begins on August 31th. So essentially, I got pushed back about two months. A few other changes are apparent this time around. In round two, we are getting paperwork that tells us our admission date should be considered tentative. Hmmm... how interesting. More specificaly, they say "we will let you know 1-2 day ahead of you admission if there is a change". Well, we'll be a bit more proactive than that.
Also, the schedule includes time for surgery. Now this is a surprising change from before. I wonder if it to is subject to the rescheduling due to... whatever. Just to be clear, no surgery is planned, just scheduled. Not sure what that means. I guess I've got a block of time reserved.
Anyway, now you're up to date. I'll get back soon with more.
As always, please keep the prayers coming.
Thanks,
Tony
Thursday, July 9, 2009
Well then...
What to do, what to do?
Today, Amanda had a phone conversation with the office manager at my local neuro's office (JWM neuro- certainly not an endorsement.). Apparently, my Dr. is too busy to pick-up a phone. We had a couple questions for her. 2 questions to be precise, could spill into a third. Unfortunately, they don't like their Dr.s to discuss anything with patients in a "non-clinical setting". Knowing the nature of my calls, options for the Cleveland clinic, possibly elsewhere, instead they prefer to set up an appointment. OH, FOR CRYING OUT LOUD! Are you kidding me? You really expect me to believe that it's about a setting. How 'bout a little truth. We want to bill both you and your insurance for 2 questions. How ridiculous! What to do?
So, at this point of the whole fiasco. I can't really just switch Dr.'s because of all the crap I going through. But none the less, I find my self wanting to drive up there and give them a piece of my mind. (No pun intended.) What to do?
BTW, if anyone reading is looking for an Office Manager / Medical Assistant position, I can tell you that JWM needs both. BADLY! Not that they don't have them, they just SUCK. Just apply and tell them that I sent you because they need help. Right now I'm having a hard time explaining to my-self why private medicine is better than the socialist version. Seriously, what kind of crap is this anyway? I've often compared government run health care to going through the BMV to get medical care. Not pretty right? I'm not so sure look where we're at now. What to do?
Has this happened to anyone else out there? I mean it's frustrating to not get a call back, it's mind-numbingly-infuriating to get a call that says, "Your Doc won't call you." Really? I mean... really???
If anyone has a good neurologist they can recommend, that would be great. I'm not sure if I'll switch now or later. But I definitely will switch. Can't believe it.
Just can't believe it. What to do?
OK, side bar. I'm not trying to turn this into a political blog. I'm just pissed about the ridiculousness I seem to encounter. So since I've use two consecutive posts to vent, I'll put up some good news next.
Aaarrrggg!
T
Today, Amanda had a phone conversation with the office manager at my local neuro's office (JWM neuro- certainly not an endorsement.). Apparently, my Dr. is too busy to pick-up a phone. We had a couple questions for her. 2 questions to be precise, could spill into a third. Unfortunately, they don't like their Dr.s to discuss anything with patients in a "non-clinical setting". Knowing the nature of my calls, options for the Cleveland clinic, possibly elsewhere, instead they prefer to set up an appointment. OH, FOR CRYING OUT LOUD! Are you kidding me? You really expect me to believe that it's about a setting. How 'bout a little truth. We want to bill both you and your insurance for 2 questions. How ridiculous! What to do?
So, at this point of the whole fiasco. I can't really just switch Dr.'s because of all the crap I going through. But none the less, I find my self wanting to drive up there and give them a piece of my mind. (No pun intended.) What to do?
BTW, if anyone reading is looking for an Office Manager / Medical Assistant position, I can tell you that JWM needs both. BADLY! Not that they don't have them, they just SUCK. Just apply and tell them that I sent you because they need help. Right now I'm having a hard time explaining to my-self why private medicine is better than the socialist version. Seriously, what kind of crap is this anyway? I've often compared government run health care to going through the BMV to get medical care. Not pretty right? I'm not so sure look where we're at now. What to do?
Has this happened to anyone else out there? I mean it's frustrating to not get a call back, it's mind-numbingly-infuriating to get a call that says, "Your Doc won't call you." Really? I mean... really???
If anyone has a good neurologist they can recommend, that would be great. I'm not sure if I'll switch now or later. But I definitely will switch. Can't believe it.
Just can't believe it. What to do?
OK, side bar. I'm not trying to turn this into a political blog. I'm just pissed about the ridiculousness I seem to encounter. So since I've use two consecutive posts to vent, I'll put up some good news next.
Aaarrrggg!
T
Tuesday, June 9, 2009
So... Here we go
This, obviously the first post of more than one, is the continuation of my effort to communicate with everyone, (family, friends, co-workers, church-folk) the whole lot of people around me. I began to give updates on the Cleveland trip, my health, & what not through the facebook's notes feature, but it proved a bit limited. Ergo, Whaz Shakin' Baby is born. Laughter... good.
I'm going to try to be very transparent in this blog. I ask that you do not share it or it's contents with anyone. As before, I'm sending this out to people who I consider "safe". If your reading this, it's because I think you care, will pray for me and my family, and will respect my privacy.
I'll start with the past just so I have an accurate record.
May 4th, 2009, 3pm
"Hey all,
A lot of you know my situation and have asked for updates, and some of you don't know. Regardless, you're getting this note because I think you care and will pray for us.
So here's the Readers Digest version:
As, my epilepsy has gotten worse, I've burned through medications and am strongly considering surgery.
So we have waited and waited as you may know to get into the Cleveland Clinic. Well, a while back, I received a call saying that my files/case were reviewed by not a doctor but by a group of doctors in some sort of Physicians conference/meeting. Furthermore, today I received some dates. July 6th - 14th.
I was contacted by a scheduler and given the basic rundown.
- EEG
- PET scan
- MRI
- DR/Surgeon consultation
- 5 day monitoring
- then we'll see what happens
So, my request, all of this is pretty ominous, and incredibly fast-paced. Please pray obviously for a good outcome, that I would walk away from Cleveland, and never have to take another pill or have another seizure. But also, that Amanda and I would be able to think quickly and clearly. That we would not be overwhelmed by the craziness of the situation, but instead have great discernment to know exactly how to handle all that is thrown our way. Please include the Dr's while you're at it. They are incredible physicians and surgeons, however still human. Last but not least, our daughter will be away from us for a while. So while she'll be glad to be with cousins and friends, she can get nervous and anxious. And her parents will miss her much.
So that's it in a nutshell. I guess.
Thanks for your prayers,
Tony"
Let's move on...
Now, we're a little less than a month out from our trip. None of the above details have changed, but we're getting ever closer. Which is good... and bad. I'm anxious to get there and get this all over with, but at the same time of course there is an element of fear. As I'm just getting started with this blog, I'll start simply by soliciting prayer. For now we don't have a lot of physical needs. That time will come, and I'll try not to be to stubborn about it. But for now simply pray. Bob used to pray over me "Let the peace of Christ reign in your heart... Col 3:15" That's sort of where I've been at lately and were I'll let you take it from there.
That's it for now,
T
I'm going to try to be very transparent in this blog. I ask that you do not share it or it's contents with anyone. As before, I'm sending this out to people who I consider "safe". If your reading this, it's because I think you care, will pray for me and my family, and will respect my privacy.
I'll start with the past just so I have an accurate record.
May 4th, 2009, 3pm
"Hey all,
A lot of you know my situation and have asked for updates, and some of you don't know. Regardless, you're getting this note because I think you care and will pray for us.
So here's the Readers Digest version:
As, my epilepsy has gotten worse, I've burned through medications and am strongly considering surgery.
So we have waited and waited as you may know to get into the Cleveland Clinic. Well, a while back, I received a call saying that my files/case were reviewed by not a doctor but by a group of doctors in some sort of Physicians conference/meeting. Furthermore, today I received some dates. July 6th - 14th.
I was contacted by a scheduler and given the basic rundown.
- EEG
- PET scan
- MRI
- DR/Surgeon consultation
- 5 day monitoring
- then we'll see what happens
So, my request, all of this is pretty ominous, and incredibly fast-paced. Please pray obviously for a good outcome, that I would walk away from Cleveland, and never have to take another pill or have another seizure. But also, that Amanda and I would be able to think quickly and clearly. That we would not be overwhelmed by the craziness of the situation, but instead have great discernment to know exactly how to handle all that is thrown our way. Please include the Dr's while you're at it. They are incredible physicians and surgeons, however still human. Last but not least, our daughter will be away from us for a while. So while she'll be glad to be with cousins and friends, she can get nervous and anxious. And her parents will miss her much.
So that's it in a nutshell. I guess.
Thanks for your prayers,
Tony"
Let's move on...
Now, we're a little less than a month out from our trip. None of the above details have changed, but we're getting ever closer. Which is good... and bad. I'm anxious to get there and get this all over with, but at the same time of course there is an element of fear. As I'm just getting started with this blog, I'll start simply by soliciting prayer. For now we don't have a lot of physical needs. That time will come, and I'll try not to be to stubborn about it. But for now simply pray. Bob used to pray over me "Let the peace of Christ reign in your heart... Col 3:15" That's sort of where I've been at lately and were I'll let you take it from there.
That's it for now,
T
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