Lori woke up with a migraine this morning. She called work and said she would be in at noon time. She went back to bed for a while . . . no help. She took another pill and laid on the couch with an ice pack on her head. After an hour and a half I woke her up to see how she was doing. Still not good.
I called her work and told them that she would not be in at all today. She went back to sleep and - once again - slept away the day. She woke up for lunch - and then for about 2 hours at dinner time (Mike had just returned from Drum Corp camp).
waiting for tomorrow . . .
Monday, November 29, 2004
Saturday, November 27, 2004
Tis the season
This is such a special time of year for us. It has been for quite some time. It is the start of the holiday season. When Ricky and Jason were just born they both ended up in the hospital just before Christmas. They were so sick. For a while we didn't know if Ricky was going to make through Christmas. Lori and I were in the hospital around the clock. Our 1st Christmas miracle. They were both home and OK for Christmas.
The next year Jason was sick again. More days in the hospital. We thought he would be there through Christmas. Another miracle later we got to take him home on Christmas Eve.
Our 1st house we used to have lit up like Disney world. You could see it stand out from the end of the block. The outside was small - so a few lights went a long way. We had no money then but Lori made our 29.99 WalMart Christmas tree look beautiful. Our first village was made with one ceramic house. The rest of the houses were candles that looked like houses. Lori took a pack of "Charles Dickens" ornaments and cut the hanging hooks off so we could have some people in the village. I Finally retired the last of those villagers a couple of years ago. We used to take old toys that the boys forgot they had and put them, along with a few new ones, out on Christmas morning so they thought Santa brought more than he actually did. Lori always had a way of adding just the right something to make our humble decorations look like a Christmas wonderland.
Our next Christmas miracle came after living in the house a few years. I had lost my job doing AC work earlier in the year. We had already lost our van to the bank and were going through bankruptcy so we could keep the house. We thought we would have to drag out the "old toys" again - even thought the boys were too old to fall for that. Then, Christmas week, we were blessed with toys and food. An anonymous gift presented to us from Sr. Dianne. It was such an incredible feeling. That day we knew, without question, Santa did exist.
Well, many years have passed since then. Some good, some not so good. They all had one thing in common - during the Christmas season we would turn our house into that magic wonderland. It became our favorite time of the year. You could see the excitement in Lori's eyes and hear it in her voice when she would sketch out a new display or come up with a new theme. Our village acquired it's own zip code a couple of years ago. Lori's "special touches" became something straight out of a magazine. She would spend hours and hours on each display, getting every detail just perfect. A simple strand of garland could take up to eight hours to get just right. She would put on her favorite movie (Miracle on 34th street - the new version) and watch it over and over while she decorated. She was so happy when she decorated and even happier when she completed each task.
For the last 9 years or so (until last year) we would get all of this started with a Thanksgiving feast. The table setting became something that would make even a professional event planner jealous. From there the Christmas decorations would follow. One room at a time the transformation would take place. It got to the point where she started doing a couple of rooms before Thanksgiving so that shortly after thanksgiving the rest of the house would be done.
Last year we had a simpler Thanksgiving. Lori just wasn't up to the task of the huge feast and preparations. Our Christmas decorations were still fabulous though much more modest. It took every bit of energy Lori had to do what she did and she barely had them completed by Christmas. We had no idea what we would do this year. I told her she would have to just take everything out of the boxes and simply put them on the shelves and tables. You could see the disappointment and hurt in her eyes as she knew this was true. There was just no way she was going to get everything done. Right now she can't even make herself lunch or dinner without help or resting halfway through.
That leads us to this year.
Ricky & Jason came home to spend the past few days with us. On Thanksgiving I cooked the turkey while the boys did the rest. Ricky did the green bean casserole, sweet potatoes, and the cranberries. Jason did the stuffing and the gravy. Mike did the corn, the bread, and the gravy. Lori had to do nothing. We didn't have the fancy table but we had the big meal. Lori couldn't have been happier.
The next day Ricky and Jason did the Christmas decorations. Mike left that day to go to Drum Corp camp for the weekend so he wasn't able to help. (Don't worry Mike - there's always the outside lights) To decorate Lori told Ricky and Jay just what to do and they did it. She showed them how to do the bows on the trees by doing one bow and they did the other 49. She showed Jay how she liked the beads strung through the garland and he did that while Ricky worked on another display. One of their friends called to see if they wanted to go play poker and they told him they were going to stay home and help their mom decorate for Christmas. They extended their visit one more day so they could get the decorations finished before they went home.
So now . . this year we have a new kind of Christmas wonderland. One created solely by Lori's boys . . for her. I can't even begin to tell you how much this means to us. There was just no way Lori could have done this. Thank you boys.
Lori has been sleeping most of the day. She slept while Ricky and Jay finished the decorations and while they helped clean up afterward from the mess. Lori woke up for about an hour and a half to visit with Mom and Dad and to run some blankets over to Jim and Laura's house. We only stayed about 20 minutes. Once we got home I re-heated some Thanksgiving leftovers for her for dinner. By about 4:45 she was asleep for the night.
As I said this is such a special time of year for us. With Lori so sick it really is hard. Some of the things we used to take for granted can't happen - like walks down main street to the carriage rides in the park to see the "no head guys". . . taking Chatty Cathy out for dinner and then driving around for a couple of hours to see all of the Christmas lights . . . going shopping at midnight to beat the crowds . . . spending one day buying everything for everyone . . . battling the crowds by going to the mall but then just walking around and watching all the crazy people all stressed out . . . spend hours at the Christmas store. . . Mickey's Very Merry Christmas . . .and so much more. These days the best we can hope for is enough energy to get through the day. One day at a time. Some are better than others but most are not so good.
Please say a special prayer for Lori. We really could use another Christmas miracle.
The next year Jason was sick again. More days in the hospital. We thought he would be there through Christmas. Another miracle later we got to take him home on Christmas Eve.
Our 1st house we used to have lit up like Disney world. You could see it stand out from the end of the block. The outside was small - so a few lights went a long way. We had no money then but Lori made our 29.99 WalMart Christmas tree look beautiful. Our first village was made with one ceramic house. The rest of the houses were candles that looked like houses. Lori took a pack of "Charles Dickens" ornaments and cut the hanging hooks off so we could have some people in the village. I Finally retired the last of those villagers a couple of years ago. We used to take old toys that the boys forgot they had and put them, along with a few new ones, out on Christmas morning so they thought Santa brought more than he actually did. Lori always had a way of adding just the right something to make our humble decorations look like a Christmas wonderland.
Our next Christmas miracle came after living in the house a few years. I had lost my job doing AC work earlier in the year. We had already lost our van to the bank and were going through bankruptcy so we could keep the house. We thought we would have to drag out the "old toys" again - even thought the boys were too old to fall for that. Then, Christmas week, we were blessed with toys and food. An anonymous gift presented to us from Sr. Dianne. It was such an incredible feeling. That day we knew, without question, Santa did exist.
Well, many years have passed since then. Some good, some not so good. They all had one thing in common - during the Christmas season we would turn our house into that magic wonderland. It became our favorite time of the year. You could see the excitement in Lori's eyes and hear it in her voice when she would sketch out a new display or come up with a new theme. Our village acquired it's own zip code a couple of years ago. Lori's "special touches" became something straight out of a magazine. She would spend hours and hours on each display, getting every detail just perfect. A simple strand of garland could take up to eight hours to get just right. She would put on her favorite movie (Miracle on 34th street - the new version) and watch it over and over while she decorated. She was so happy when she decorated and even happier when she completed each task.
For the last 9 years or so (until last year) we would get all of this started with a Thanksgiving feast. The table setting became something that would make even a professional event planner jealous. From there the Christmas decorations would follow. One room at a time the transformation would take place. It got to the point where she started doing a couple of rooms before Thanksgiving so that shortly after thanksgiving the rest of the house would be done.
Last year we had a simpler Thanksgiving. Lori just wasn't up to the task of the huge feast and preparations. Our Christmas decorations were still fabulous though much more modest. It took every bit of energy Lori had to do what she did and she barely had them completed by Christmas. We had no idea what we would do this year. I told her she would have to just take everything out of the boxes and simply put them on the shelves and tables. You could see the disappointment and hurt in her eyes as she knew this was true. There was just no way she was going to get everything done. Right now she can't even make herself lunch or dinner without help or resting halfway through.
That leads us to this year.
Ricky & Jason came home to spend the past few days with us. On Thanksgiving I cooked the turkey while the boys did the rest. Ricky did the green bean casserole, sweet potatoes, and the cranberries. Jason did the stuffing and the gravy. Mike did the corn, the bread, and the gravy. Lori had to do nothing. We didn't have the fancy table but we had the big meal. Lori couldn't have been happier.
The next day Ricky and Jason did the Christmas decorations. Mike left that day to go to Drum Corp camp for the weekend so he wasn't able to help. (Don't worry Mike - there's always the outside lights) To decorate Lori told Ricky and Jay just what to do and they did it. She showed them how to do the bows on the trees by doing one bow and they did the other 49. She showed Jay how she liked the beads strung through the garland and he did that while Ricky worked on another display. One of their friends called to see if they wanted to go play poker and they told him they were going to stay home and help their mom decorate for Christmas. They extended their visit one more day so they could get the decorations finished before they went home.
So now . . this year we have a new kind of Christmas wonderland. One created solely by Lori's boys . . for her. I can't even begin to tell you how much this means to us. There was just no way Lori could have done this. Thank you boys.
Lori has been sleeping most of the day. She slept while Ricky and Jay finished the decorations and while they helped clean up afterward from the mess. Lori woke up for about an hour and a half to visit with Mom and Dad and to run some blankets over to Jim and Laura's house. We only stayed about 20 minutes. Once we got home I re-heated some Thanksgiving leftovers for her for dinner. By about 4:45 she was asleep for the night.
As I said this is such a special time of year for us. With Lori so sick it really is hard. Some of the things we used to take for granted can't happen - like walks down main street to the carriage rides in the park to see the "no head guys". . . taking Chatty Cathy out for dinner and then driving around for a couple of hours to see all of the Christmas lights . . . going shopping at midnight to beat the crowds . . . spending one day buying everything for everyone . . . battling the crowds by going to the mall but then just walking around and watching all the crazy people all stressed out . . . spend hours at the Christmas store. . . Mickey's Very Merry Christmas . . .and so much more. These days the best we can hope for is enough energy to get through the day. One day at a time. Some are better than others but most are not so good.
Please say a special prayer for Lori. We really could use another Christmas miracle.
Wednesday, November 24, 2004
Back To Work! with a little help . . .
Well . . . Lori made it back to work today. . . with a little help. I had to wheel her to her desk in a wheel chair. After she took her shower she had to rest for 45 minutes to get dressed. After she got dressed she had to rest for 30 minutes to get to the car.
It took some encouraging to get her to go in the wheel chair. She realized she is better off "riding" to her desk and being there half a day (or more) or walking to her desk and barely making it a couple of hours.
She has been there for 3 1/2 hours now. Expecting a phone call soon . . .
It took some encouraging to get her to go in the wheel chair. She realized she is better off "riding" to her desk and being there half a day (or more) or walking to her desk and barely making it a couple of hours.
She has been there for 3 1/2 hours now. Expecting a phone call soon . . .
Monday / Tuesday
Monday -
No work - slept ALL day - Cough bad - hard to breathe. Gave her a shot of Grande Marnier. That worked for a few hours. Guess we'll have to get her a flask "for medicinal purposes"
Went to bed at 5:00.
Tuesday -
Went to see the Pulmonologist today. Dr. Bonilla. She seems nice. Lori and I both liked her. Lori's primary Dr. recommended her.
Dr. Bonilla says the cough and the shortness of breathe may or may not be related to each other. After reviewing Lori's meds the Dr. said that a few of them could be causing her cough. Also some of Lori's conditions could be causing it. She gave her a sample of "Flonase". A prescription sinus medicine to treat any possible (although unlikely) sinus drip that in causing the cough.
Dr. Bonnilla has prescribed the following tests:
Echocardiogram
Complete pulmonary function test (test each level of the lung)
Sleep Study
After the results we will go back for treatment.
No work - slept ALL day - Cough bad - hard to breathe. Gave her a shot of Grande Marnier. That worked for a few hours. Guess we'll have to get her a flask "for medicinal purposes"
Went to bed at 5:00.
Tuesday -
Went to see the Pulmonologist today. Dr. Bonilla. She seems nice. Lori and I both liked her. Lori's primary Dr. recommended her.
Dr. Bonilla says the cough and the shortness of breathe may or may not be related to each other. After reviewing Lori's meds the Dr. said that a few of them could be causing her cough. Also some of Lori's conditions could be causing it. She gave her a sample of "Flonase". A prescription sinus medicine to treat any possible (although unlikely) sinus drip that in causing the cough.
Dr. Bonnilla has prescribed the following tests:
Echocardiogram
Complete pulmonary function test (test each level of the lung)
Sleep Study
After the results we will go back for treatment.
Sunday, November 21, 2004
Sunday
ZZZZzzzzzzzzzZZzZZzzzzzzz . . . . . ZZzzzzzzzzzZZZZZZZZZZzzzzzzzz . . . zZ
That's about it!
Cough was real bad this afternoon. Face is pretty broken out too. She doesn't look very good. Feels worse. Started listening to Christmas music today. Even busted out the Christmas DVD's. Lori fell asleep while watching the first one (miracle on 34th street . . . of course).
Tomorrow - call the rhumey to get an appointment
That's about it!
Cough was real bad this afternoon. Face is pretty broken out too. She doesn't look very good. Feels worse. Started listening to Christmas music today. Even busted out the Christmas DVD's. Lori fell asleep while watching the first one (miracle on 34th street . . . of course).
Tomorrow - call the rhumey to get an appointment
Saturday, November 20, 2004
Catch up time again
OK . . .It's Saturday night. Haven't updated since Tuesday. (Real busy week!!!)
The update - not good. Last I reported Lori was tired from taking herself to the Dr and then going shopping. It appears that there was much more to it than that.
She made it to work on Wednesday . . . but only for a couple of hours. I dropped her off at 8:30 and she called me to pick her up at 11:30 (ish). She hasn't been back to work since. In fact she called Jim today to tell him she wouldn't be in tomorrow or probably Monday.
She has spent most of the past 3 days in bed. She did, on Thursday, manage to pull some energy from somewhere to join Jim and his family at our house for lunch. As soon as they left she went back to bed. She knew better than to do that!!
Her cough is getting worse. Seems to be occurring more frequently with the spasms lasting longer. Her breathing is getting worse too. She can't hardly walk across the house without having a hard time breathing. We did some breathing exercises last night. It seemed to help her a bit.
I guess that catches us up!. Bottom line - Lori is worse now than she was when she was on leave. She is almost as bad as she has ever been. Yesterday she really looked bad as well as felt bad. If we thought there was something that would have happened we would have taken her to the hospital.
The update - not good. Last I reported Lori was tired from taking herself to the Dr and then going shopping. It appears that there was much more to it than that.
She made it to work on Wednesday . . . but only for a couple of hours. I dropped her off at 8:30 and she called me to pick her up at 11:30 (ish). She hasn't been back to work since. In fact she called Jim today to tell him she wouldn't be in tomorrow or probably Monday.
She has spent most of the past 3 days in bed. She did, on Thursday, manage to pull some energy from somewhere to join Jim and his family at our house for lunch. As soon as they left she went back to bed. She knew better than to do that!!
Her cough is getting worse. Seems to be occurring more frequently with the spasms lasting longer. Her breathing is getting worse too. She can't hardly walk across the house without having a hard time breathing. We did some breathing exercises last night. It seemed to help her a bit.
I guess that catches us up!. Bottom line - Lori is worse now than she was when she was on leave. She is almost as bad as she has ever been. Yesterday she really looked bad as well as felt bad. If we thought there was something that would have happened we would have taken her to the hospital.
Wednesday, November 17, 2004
Tuesday Night
Well Lori had a decent day. After the Doctor she went to the store . . . all by herself :)
She ended up overdoing it and wiping herself out. Also seemed to be in a lot of pain when she walked. She did take a 2 hour nap and get some energy back. Hopefully she will be able to get through the next couple of days.
As much as I hate complaining about it it really s*ck$ that Lori can't go shopping. Not so much that I have to do the grocery shopping but more that Lori can't go "bummin" like she used to. She used to love to go to "her" stores and just browse for hours. I say again "It REALLY s*ck$ ! ! !"
until tomorrow . . .
She ended up overdoing it and wiping herself out. Also seemed to be in a lot of pain when she walked. She did take a 2 hour nap and get some energy back. Hopefully she will be able to get through the next couple of days.
As much as I hate complaining about it it really s*ck$ that Lori can't go shopping. Not so much that I have to do the grocery shopping but more that Lori can't go "bummin" like she used to. She used to love to go to "her" stores and just browse for hours. I say again "It REALLY s*ck$ ! ! !"
until tomorrow . . .
Tuesday, November 16, 2004
Friday, Saturday, Sunday, Monday, Tuesday
Friday - Lori was off. She was pretty tired, but not too bad. We went to the store together - not a lot of walking - more driving. I was off to Mike's football game around 6:00. She was still up when I got back at 10:30. I brought her a Dairy Queen Blizzard. When she was eating it her Renaud's Syndrome kicked in so bad I had to get her a dishpan filled with hot water to get her hands to stop shaking.
Saturday and Sunday I was gone all day.
Saturday I was at the State Marching Band Competition in Orlando with Mike. Mike's band came in 17th place but the his drumline came in 1st!!!. Number 1 in the state class AA. Not too sure how Lori did - talked to her a few times on the phone. She sounded a little tired - but not too bad.
Sunday Lori worked from 8:00 to 4:00. She called for pizza for dinner when she got home (Ricky & Jay were here). She went to bed about 7:00. (I got home about 2:30 am.)
Monday I took Lori to work at 8:30. Picked her up at 4:30. She was pretty tired. It is good she is taking today off (vacation day). The good news is she has almost reached her membership goal for the month (yeah).
Tuesday
Lori went to the Dr today (I didn't go with her this time - seems kinda weird - I usually go). Her Dr is sending her to a pulmonologist to see what the coughing is all about. Her cough (as I have described before) is a dry, hacking cough that has recently led to gagging. This has been going on for two months. So now we get to see a new doctor.
Saturday and Sunday I was gone all day.
Saturday I was at the State Marching Band Competition in Orlando with Mike. Mike's band came in 17th place but the his drumline came in 1st!!!. Number 1 in the state class AA. Not too sure how Lori did - talked to her a few times on the phone. She sounded a little tired - but not too bad.
Sunday Lori worked from 8:00 to 4:00. She called for pizza for dinner when she got home (Ricky & Jay were here). She went to bed about 7:00. (I got home about 2:30 am.)
Monday I took Lori to work at 8:30. Picked her up at 4:30. She was pretty tired. It is good she is taking today off (vacation day). The good news is she has almost reached her membership goal for the month (yeah).
Tuesday
Lori went to the Dr today (I didn't go with her this time - seems kinda weird - I usually go). Her Dr is sending her to a pulmonologist to see what the coughing is all about. Her cough (as I have described before) is a dry, hacking cough that has recently led to gagging. This has been going on for two months. So now we get to see a new doctor.
Thursday, November 11, 2004
Thursday Late Night
It's 11:00. Lori has been sleeping for about 4 hours now. She did make it till 4:00 today!. She and I were talking about how strange it is we "celebrate" the fact that she can work (2) 7 hour days (including lunch) in a row. . . then come home and pass out. Her job actually requires her to be there 9 hours (including lunch) a day. Even last year at this time she was working full days. It truly has been a rough year.
This week has really taken a toll on her. You can see it in her eyes. She is already lost the spark she had when she went back to work after her leave. Her new boss has taken 90% of Lori's managerial duties away and delegated them to someone else. This is a good thing - especially with gift certificate season starting in a couple of weeks. Lori's supposed to have nothing to do with it. I think it's as more for their benefit (since that can't really count on Lori to be there anymore) as it is for Lori's. We'll take it though.
Tomorrow she rests. All day. Hopefully after a couple of days she can get through Sunday and Monday.
This week has really taken a toll on her. You can see it in her eyes. She is already lost the spark she had when she went back to work after her leave. Her new boss has taken 90% of Lori's managerial duties away and delegated them to someone else. This is a good thing - especially with gift certificate season starting in a couple of weeks. Lori's supposed to have nothing to do with it. I think it's as more for their benefit (since that can't really count on Lori to be there anymore) as it is for Lori's. We'll take it though.
Tomorrow she rests. All day. Hopefully after a couple of days she can get through Sunday and Monday.
Welcome
Greetings everyone from the "Lori update" e-mail list (and the others I sent an e-mail to). I started this on OCT 31st. Been keeping up pretty good. It can get a bit depressing reading it . . I know it can be depressing writing it . . but we need to document EVERYTHING Lori goes through. This seems to be a good way to do it. Please e-mail me if you have any comments or questions.
Thanks
Rick
Thanks
Rick
Thursday
Noticed last night and this morning Lori's cough seems to be getting worse. She has started gagging (sp?) for no apparent reason too. Nothing really seems to trigger it (like an asthma thing) . . . just kinda happens. Been about eight weeks now. Wonder if it is one of the new medicines? Lori has to take 20 pills a day !!!!!!!!!!!!!!!!!!!! 21 on Saturday ;-)
Tomorrow she is off for the next two days. I will be in Orlando on Saturday with Mike and Sunday going to Mom & Dad's (actually going from Orlando on Saturday). Ricky & Jay will come over on Saturday and sit with Lori for a while.
It's almost 2:30. Lori wants to make it till 4:00 again. See what happens . . .
Tomorrow she is off for the next two days. I will be in Orlando on Saturday with Mike and Sunday going to Mom & Dad's (actually going from Orlando on Saturday). Ricky & Jay will come over on Saturday and sit with Lori for a while.
It's almost 2:30. Lori wants to make it till 4:00 again. See what happens . . .
Wednesday, November 10, 2004
MADE IT UNTILL 4:00 TODAY ! ! !
Yeah!. Lori made it till 4:00 today. 1st time in months. That's pretty bad - I know. She is completely trashed now though. She barely had the energy to change into her jammies when she got home.
She found out today she has to work Thanksgiving - at least 1/2 of the day. We figured as much. It's out of the question for her to ask for anytime off. Don't know if she has to work in the morning or the evening.
She is lying on the couch with her laptop on her lap browsing her Lupus forum. That thing really means alot to her. It really is amazing how many of her friends go through the same "stuff" on a daily basis - though not many have it as bad as Lori. There are many on the board that look to Lori for inspiration.
Alright . . . back to work for me
Until tomorrow. . .
She found out today she has to work Thanksgiving - at least 1/2 of the day. We figured as much. It's out of the question for her to ask for anytime off. Don't know if she has to work in the morning or the evening.
She is lying on the couch with her laptop on her lap browsing her Lupus forum. That thing really means alot to her. It really is amazing how many of her friends go through the same "stuff" on a daily basis - though not many have it as bad as Lori. There are many on the board that look to Lori for inspiration.
Alright . . . back to work for me
Until tomorrow. . .
Wednesday AM
It is a good thing Lori stayed home yesterday. She woke up about 9:00 feeling pretty tired. She stayed with her feet up for most of the day. Didn't sleep a lot but whenever she tried to do something she ended up back on the couch 5 minutes later.
She did feel better this morning. Hopefully she will make it through the day. If she does she will probably do the same thing next week (take Tuesday off).
Ricky & Jay came over yesterday. That always makes her feel better. . . even if only temporarily.
I guess this "blog" is working out OK. I print out a copy of each entry and put it in a book I made. Someday - if we need it - I will have a record of Lori's day to day activities.
More later . . .
She did feel better this morning. Hopefully she will make it through the day. If she does she will probably do the same thing next week (take Tuesday off).
Ricky & Jay came over yesterday. That always makes her feel better. . . even if only temporarily.
I guess this "blog" is working out OK. I print out a copy of each entry and put it in a book I made. Someday - if we need it - I will have a record of Lori's day to day activities.
More later . . .
Tuesday, November 09, 2004
Tuesday . . . Sick Day
Well - she was more tired than she thought yesterday when she got home. Pretty much just slept on the couch most of the evening.
About 7:00 last night she decided she could probably go to work today - but wouldn't make it very long and might not make Wed & Thurs. She decided to call Jim (her boss) and leave a message that she would be staying home sick today. Hopefully this will allow her to get two more good days in this week.
She's sleeping now. Hopefully she will wake up feeling well this AM
About 7:00 last night she decided she could probably go to work today - but wouldn't make it very long and might not make Wed & Thurs. She decided to call Jim (her boss) and leave a message that she would be staying home sick today. Hopefully this will allow her to get two more good days in this week.
She's sleeping now. Hopefully she will wake up feeling well this AM
Monday, November 08, 2004
Good Day
Today is actually turning out to be a pretty good day. Lori just called. She is on her way home. Tired and sore - but not completely exhausted. While she didn't quite make it to 4:00 like she wanted too 3:00 is pretty good.
Not sure if she is working tomorrow or taking the day off. (knowing her - probably working even though she should stay home so she can get through Wednesday & Thursday)
She just walked in. A little more tired than she sounded on the phone. Still a pretty OK day . . . I guess
Not sure if she is working tomorrow or taking the day off. (knowing her - probably working even though she should stay home so she can get through Wednesday & Thursday)
She just walked in. A little more tired than she sounded on the phone. Still a pretty OK day . . . I guess
Monday AM
Picked Lori up yesterday afternoon at 2:00. She was tired but not completely wiped out. Had some lunch - then took a nap from 4:00 ish to 5:30 ish.
Lori made us grilled cheese sandwiches and soup for dinner. Then, after talking to Mike & Nikki for a couple of hours we watched some TV. She stayed up till 11:00.
This morning she was tired but did pretty good getting ready for work. She is shooting for 4:00 today. (fingers crossed)
Lori made us grilled cheese sandwiches and soup for dinner. Then, after talking to Mike & Nikki for a couple of hours we watched some TV. She stayed up till 11:00.
This morning she was tired but did pretty good getting ready for work. She is shooting for 4:00 today. (fingers crossed)
Sunday, November 07, 2004
Wow - three posts behind!
So much for posting twice a day!
Friday PM:
Friday night was great - even though it wiped Lori out. We gathered on the football field before the game. We then got to wolk down the 50 yard line, meeting Mike half way. We then walked off the field as they said a little about Mike and his goals & accomplishments. After some standing and pictures we went to the sands for the start of the game.
I left with the band during the 2nd quarter to go help during warm-up & help with the half time show. Lori stayed in the stands to watch the show. After half time I went to the stands to check on Lori . . . she looked pretty bad. She was definately ready to go home. We left at the begining of the third quarter. She really wanted to be able to make it through the whole game. I got her home and into bed (I thought) and then back to help the band after the game. Turns out right after Lori got settled in on the couch Ricky & Jay came over (yeah). They talked to her till I got home after the game - then she went to bed.
Saturday:
Lori woke up feeling pretty good (slept till 10:00ish). Ricky & Jay spent the night. She enjoyed them being here when she got up. I worked for a bit in the morning but then had to do my "chores". Lori talked R & J into helping clean the house (thanks again guys). She picked up a bit too. maybe a half hours worth.
Mike had a couple of friends over for lunch (pizza) The band had practice in the morining then a competition at night. When they got here (12:30 ish) Lori and I went to the living room while they stayed in the family room. Lori said she was going to go to the competition later that evening. R & J would take her. After sitting there for an hour or so she decided she would not make it to the competition. I agreed 100%. She was still real tired and sore from yesterday football game. There was na way she would make it through another performance.
So - She got set up on the couch and Mike and I went off to the competition. It's a good thing she didn't go. She ended up going to bed at 7:30!
Sunday AM:
Lori got up and ready for work OK this morning. She just called me and told me she was not doing good but wanted to see if she could last till 4:00. She said:
"this is so hard for me . . . working
I can't even concentrate . . .
I can't think straight . . ."
I asked if she was just "out of practice from being off for ten weeks"
She said:
"No. It should be second nature . I should be able to do it with my eyes closed. I know how to do all of this.. . .
It's hard to explain. . .
I felt just like this last week . . . thought it was just from being so out of it.
today's the same way . . it's weird"
So - with that I get back to work. I'll update later on the rest of the day
Friday PM:
Friday night was great - even though it wiped Lori out. We gathered on the football field before the game. We then got to wolk down the 50 yard line, meeting Mike half way. We then walked off the field as they said a little about Mike and his goals & accomplishments. After some standing and pictures we went to the sands for the start of the game.
I left with the band during the 2nd quarter to go help during warm-up & help with the half time show. Lori stayed in the stands to watch the show. After half time I went to the stands to check on Lori . . . she looked pretty bad. She was definately ready to go home. We left at the begining of the third quarter. She really wanted to be able to make it through the whole game. I got her home and into bed (I thought) and then back to help the band after the game. Turns out right after Lori got settled in on the couch Ricky & Jay came over (yeah). They talked to her till I got home after the game - then she went to bed.
Saturday:
Lori woke up feeling pretty good (slept till 10:00ish). Ricky & Jay spent the night. She enjoyed them being here when she got up. I worked for a bit in the morning but then had to do my "chores". Lori talked R & J into helping clean the house (thanks again guys). She picked up a bit too. maybe a half hours worth.
Mike had a couple of friends over for lunch (pizza) The band had practice in the morining then a competition at night. When they got here (12:30 ish) Lori and I went to the living room while they stayed in the family room. Lori said she was going to go to the competition later that evening. R & J would take her. After sitting there for an hour or so she decided she would not make it to the competition. I agreed 100%. She was still real tired and sore from yesterday football game. There was na way she would make it through another performance.
So - She got set up on the couch and Mike and I went off to the competition. It's a good thing she didn't go. She ended up going to bed at 7:30!
Sunday AM:
Lori got up and ready for work OK this morning. She just called me and told me she was not doing good but wanted to see if she could last till 4:00. She said:
"this is so hard for me . . . working
I can't even concentrate . . .
I can't think straight . . ."
I asked if she was just "out of practice from being off for ten weeks"
She said:
"No. It should be second nature . I should be able to do it with my eyes closed. I know how to do all of this.. . .
It's hard to explain. . .
I felt just like this last week . . . thought it was just from being so out of it.
today's the same way . . it's weird"
So - with that I get back to work. I'll update later on the rest of the day
Friday, November 05, 2004
OK . . .Long one here
Yesterday I posted that Lori woke up and didn't feel well at all. After some real effort on her part, Lori got ready to go to work. I had to take MacKenzie to the vet. We dropped Lori off at work and went to the vet. While still at the vet my phone rang. It was Lori ready to come home. She made it for about an hour. Unfortunately I couldn't get there for a little bit so she ended up staying at work for about two hours.
We had an appt with the new Rheumetoligist at 2:45. It took about 35 minutes to get to her office. Lori fell asleep in the waiting room. The appointment went pretty good. After reviewing all of Lori's conditions the Dr. Said "I'm really surprised you're still working". We reviewed Lori's history and meds. After about 45 minutes with the Dr we determined that Lori's "A Mess".
Unfortunately there isn't much that can be done. We will see how the medicine recently prescribed by the Nephrologist does after another month or so. The Doc did want Lori to start doing some kind of "chair aerobics" or stretching on a daily basis. She also wants Lori to get a sleep study to make sure she is resting properly at night.
The Doc also reviewed some of the requirements for disability. One of them is good documentation. We told her that our goal was to avoid having to go on permanent disability. She agreed but also stated that sometimes we have no choice. She told us the Lupus foundation was having their annual meeting on Nov. 13. A Social Security Disability Attorney is going to be one of the speakers. Unfortunately I will be with Mike's band in Orlando that day.
Our next appointment with her is for February. Let's see if we can make it that far.
Lori is thinking of building in sick days to her schedule. Right now she works Sun thru Thurs. She is going to talk to Jim on Monday and see if she can do Sun, Mon, sick day Tuesday, Wed, Thurs, & off Friday & Saturday. This would give her no more than two days in a row working - at least till her sick and vacation runs out. Not sure if this would work or if the Spa would go for it. (Not really sure if it is even a good idea). Just trying to come up with something.
She's resting now. Tonight is senior night at Mike's football game. Mike gets introduced as a senior. Lori and I get to escort him down the 50 yard line. Fortunately the weather is perfect for Lori to go tonight.
I'll check in later and post how she does at the game
We had an appt with the new Rheumetoligist at 2:45. It took about 35 minutes to get to her office. Lori fell asleep in the waiting room. The appointment went pretty good. After reviewing all of Lori's conditions the Dr. Said "I'm really surprised you're still working". We reviewed Lori's history and meds. After about 45 minutes with the Dr we determined that Lori's "A Mess".
Unfortunately there isn't much that can be done. We will see how the medicine recently prescribed by the Nephrologist does after another month or so. The Doc did want Lori to start doing some kind of "chair aerobics" or stretching on a daily basis. She also wants Lori to get a sleep study to make sure she is resting properly at night.
The Doc also reviewed some of the requirements for disability. One of them is good documentation. We told her that our goal was to avoid having to go on permanent disability. She agreed but also stated that sometimes we have no choice. She told us the Lupus foundation was having their annual meeting on Nov. 13. A Social Security Disability Attorney is going to be one of the speakers. Unfortunately I will be with Mike's band in Orlando that day.
Our next appointment with her is for February. Let's see if we can make it that far.
Lori is thinking of building in sick days to her schedule. Right now she works Sun thru Thurs. She is going to talk to Jim on Monday and see if she can do Sun, Mon, sick day Tuesday, Wed, Thurs, & off Friday & Saturday. This would give her no more than two days in a row working - at least till her sick and vacation runs out. Not sure if this would work or if the Spa would go for it. (Not really sure if it is even a good idea). Just trying to come up with something.
She's resting now. Tonight is senior night at Mike's football game. Mike gets introduced as a senior. Lori and I get to escort him down the 50 yard line. Fortunately the weather is perfect for Lori to go tonight.
I'll check in later and post how she does at the game
Thursday, November 04, 2004
Big Day
Another day of waking up and not feeling well. I just don't know what to do for Lori. I guess she is just going to have to stop working . . . but then we lose her insurance. Just don' t know what to do.
Sending an e-mail to some of you self-employeed type people for advice
Sending an e-mail to some of you self-employeed type people for advice
Wednesday, November 03, 2004
Anxiously Awaiting Tomorrow
Today went as expected. Lori slept off and on most of the day. Her "Foggy Head" is back again. Kinda like a head cold . . without the stuffy head she says. "Hard to explain"
Tomorrow we go to the new Rhumie (yeah). Got some stuff to do in the morning to get ready (fill out the paperwork, check referral, and make a bunch of copies of labs, test results, etc). Hopefully this Dr will be good. Her name is Susan Fraser. She works directly with the Lupus Foundation http://www.geocities.com/greaterfla/ask.htm . We'll see tomorrow.
Tomorrow we go to the new Rhumie (yeah). Got some stuff to do in the morning to get ready (fill out the paperwork, check referral, and make a bunch of copies of labs, test results, etc). Hopefully this Dr will be good. Her name is Susan Fraser. She works directly with the Lupus Foundation http://www.geocities.com/greaterfla/ask.htm . We'll see tomorrow.
Wednesday Morning . . No Work again
We know Lori didn't work yesterday. What I forgot to say is she slept for almost 15 hours in a row again Monday Night. Fell asleep on the couch last night watching the election. Not exactly sure when (I was working) but it was around 8:30.
She got up with Mike, got him off to school, and picked up the kitchen a bit from last night. Drank a cup of coffee and tried to get ready for work. Took a shower . . . that was as far as she got. Couldn't even dry her hair.
She is resting now - might try to get to work for a couple of hours this afternoon.
So to recap. She went back to work last Monday. Worked Monday, Tuesday, Wednesday, and Thursday. Not one day more than 6 hours - most closer to 4. Had Friday and Saturday off - slept. Sunday she worked 3 hours - Monday 4 1/2 hours. Tuesday & Today could not work. After today she will have worked 26 (+/-)hours in what should have been closer to 56 hours. (8 days @ 7 hrs/day).
My opinion there is no way she will be able to work any type of full time job unless something changes dramatically.
She got up with Mike, got him off to school, and picked up the kitchen a bit from last night. Drank a cup of coffee and tried to get ready for work. Took a shower . . . that was as far as she got. Couldn't even dry her hair.
She is resting now - might try to get to work for a couple of hours this afternoon.
So to recap. She went back to work last Monday. Worked Monday, Tuesday, Wednesday, and Thursday. Not one day more than 6 hours - most closer to 4. Had Friday and Saturday off - slept. Sunday she worked 3 hours - Monday 4 1/2 hours. Tuesday & Today could not work. After today she will have worked 26 (+/-)hours in what should have been closer to 56 hours. (8 days @ 7 hrs/day).
My opinion there is no way she will be able to work any type of full time job unless something changes dramatically.
Tuesday, November 02, 2004
What ?
So this memory thing can really be frustrating . . . for both of us. Lori forgets things a lot. It is a Lupus related condition called "cognitive dysfunction". It's at least once a day now that I need to say something or we discuss something that we already discussed. Sometimes just the previous day.
It's really kind of bizarre. It's not like - "hey . . . do you know where I out my car keys?" This is different. Hard to explain. Just thought that since I'm doing this journal thing I would mention it.
BTW - we voted. Left the house and were back in about 15 minutes. Took Lori. If there was a line I was going to bring her back. Worked out good.
It's really kind of bizarre. It's not like - "hey . . . do you know where I out my car keys?" This is different. Hard to explain. Just thought that since I'm doing this journal thing I would mention it.
BTW - we voted. Left the house and were back in about 15 minutes. Took Lori. If there was a line I was going to bring her back. Worked out good.
Its Election Day!
Finally - we will no longer have to listen to and/or watch commercials about how bad the other side is. Hopefully the lawyers won't drag this thing out for too long.
So . . . Lori called in sick today :( Lot's of aches and pains with no energy. We go to her new Rhumie on Thursday. Maybe she will have some answers.
Lori wants to go vote later, but I doubt it. Especially if there are any kind of lines. I'll probably go up to the polling place and check it out. If it's not bad I'll call her and see if she wants to come up.
Lori's upstairs sleeping. I'll report back later when she wakes up.
So . . . Lori called in sick today :( Lot's of aches and pains with no energy. We go to her new Rhumie on Thursday. Maybe she will have some answers.
Lori wants to go vote later, but I doubt it. Especially if there are any kind of lines. I'll probably go up to the polling place and check it out. If it's not bad I'll call her and see if she wants to come up.
Lori's upstairs sleeping. I'll report back later when she wakes up.
Monday, November 01, 2004
Monday Evening
I picked Lori up at 1:00 today. 4 1/2 hours today. Came home and took a nap. Woke up when Mike came home (2:30 ish) and talked to him (and Nikki) for a while. We then talked about how long she thinks she will be able to work. All we know is at this rate it won't be the three years we were hoping.
5:30 she tried to cook dinner (mmmm . . . hamburger helper). Couldn't.
It's now 7:30 and she's out for the evening. Sleeping on the couch. I'll move her up to bed later.
I guess i need to start looking for some kind of health insurance for down the road.
5:30 she tried to cook dinner (mmmm . . . hamburger helper). Couldn't.
It's now 7:30 and she's out for the evening. Sleeping on the couch. I'll move her up to bed later.
I guess i need to start looking for some kind of health insurance for down the road.
Monday Morning
It's Monday (Lori's Tuesday since she starts her week on Sunday). She seemed to get up OK with Mike this am. Was ready to go to work about 7:45. Her new hours are 8:30 to 5:00 (not 9:00 to 5:30). We'll see how well she does today.
It is a new month. I know she really wants to make her membership goal for the month. Especially if she leaves early a lot. They really did bad while she was gone.
Will check back in if I hear anything.
It is a new month. I know she really wants to make her membership goal for the month. Especially if she leaves early a lot. They really did bad while she was gone.
Will check back in if I hear anything.
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