Monday, January 30, 2006
Today – Worse Than Yesterday…
… and yesterday wasn’t that good! Lori did manage to squeak out a couple of hours of computer time in during the morning hours. That was about it for yesterday though. She also managed to muster up the energy to cook dinner. She pretty much passed out after dinner. Woke up for a bit around 9:00 and then went to bed at 10:30 (ish)
This morning she woke up feeling pretty bad. It was raining. I’m not sure if the rain had any effect or not but Lori was very sore. Also it was a “potsy” day. Couldn’t stand much at all. In fact just making a couple of phone calls today took everything she had.
Lori became a bit emotional earlier. Ricky & Mike (both have sprained ankles) had Doctor appointments this afternoon. Lori wanted to take them so I could keep working. Unfortunately she knows she just isn’t able to do something like that. It is not possible on a day like this. Even on a good day it would be difficult at best. It really gets her down as it would anyone, I believe.
By dinner time Lori was pretty well done for the day. It’s 6:00 now and she is ready for bed. I think she will go soon, right after she gathers everything for tomorrow’s Dr visits. EDIT: 6:20 and she just came in to say good night.
We see both Dr Segal (new Nephrologist – saw once) and Dr. Richards (new Rheumatologist – haven’t seen yet) tomorrow. Our 1st appointment is at 9:45. We leave here about 6:00. I’ll let you know how it goes when we get back. Hopefully I’ll have some good stuff to post at that time.
Saturday, January 28, 2006
Not A Good Day
As expected it was a couch day. No energy at all today.
We really have to find out what the pain is in her backside. It has really become debilitating. Sounds like possibly Sciatica. Not sure. Lori did have a similar experience during one of our trips to Atlanta for chemo. I’ll have to check back and see what was going on back then.
Whatever it is she needs some relief soon.
More tomorrow
The Daily Updates Begin
Friday
Yesterday was a fairly typical day. Lori went to the bank and to the drug store. When she got back she rested. Later in the afternoon she made a few phone calls and then more resting.
Her backside was really hurting. Even lying down hurt. Also had a headache. She planned on making dinner – at 5:45 I made us some soup. Lori wasn’t able to get up and cook. No big deal. We usually have some “instant” type dinners ready to go for just such an occasion.
Lori didn’t make it to our SciFi Friday shows. She went to bed about 7:30.
Saturday
Lori slept for 13+ hours. She woke up feeling pretty bad.
Has a real foggy head and in a lot of pain. After making her breakfast I got her set up on the couch for the next few hours. Today looks like one of those “don’t leave the couch” days.
More later.
End Of Round Two . . .
. . . Social Security – 2, Lori - 0
That’s correct. The great bureaucracy, in their infinite wisdom, has declined Lori’s disability claim yet again. They cite as a reason, We understand you cannot do heave lifting but that should not limit you from doing your job.” HUH!?!?!? Uh…OK.
EDIT: I listed a long rant of things Lori can’t do but deleted it. We all know Lori’s limitations. It’s a shame the Social Security Administration does not see it.
The next step is a court appearance in front of a judge. We have been in contact with the attorney. They informed us it will take about 6 months to get the court date. At that time the attorney will fly down (they are located in Washington DC) to meet with us and then we will have our “day in court”. They also told us most cases are approved once you appear before a judge. What a joke.
For us it is not a major issue if it takes another 6 months. Lori’s disability insurance sends us a check monthly. For people who do not have that type of insurance and find themselves disabled they would be without income for a year and a half! That’s just not right. I understand the government has to combat fraud someway but…
So I will be going back to documenting Lori’s everyday activities. Not sure if we will need it when we meet with the lawyer but I would rather have it ready.
Sunday, January 15, 2006
2005 The Good!
As I posted previously 2005 was an “emotional year with Lori dealing with the fact that her life has changed, and, at least for the near future, will not be the same.” Here is a chance to focus on the good things that happened last year.
From what I see the best thing that happen to Lori in the year 2005 was the re-establishing of relationships with some family and friends that she hasn’t talked to in years. It really brightens her days to talk to everyone and reminisce about the past while talking about the future. Thanks to all of you who have made the effort to contact Lori.
I also want to mention how Lori’s relationship with her Mother has become very close this year. They talk to each other almost every day. Lori wishes she could do more things with her Mom. Unfortunately, due to Lori’s health, they don’t do much, but the time they spend together is really precious to Lori.
In it’s own bizarre way the diagnosis of POTS was another positive event from last year. It allowed us to stop worrying about “what else is wrong” and gave us something to start treating. The disease is terrible, and the treatment is very contradictive to the treatment for the nephritis, but this is a good news post so we won’t get into that. Let’s just leave it as we now have something to treat, and that's a good thing.
Then there are the girls. Ah yes. Lori’s girls. Chatty, Hannah, Bug, Tiffany, Muffin, Jo, Holly, Emmy, Annie, and Haley. The girls give Lori so much joy. We started the year with one. The Chatty Cathy I gave Lori a few years ago as a Christmas Present (Chatty) was the only one we had 12 months ago. By the end of the year she was up to ten. Each has their own personality and enjoys doing different things with Lori (and me). Only two more to go and we can make our own calendar!
We moved some rooms around and turned my office into what we like to call “Lori’s Playroom”. Perhaps I’ll post some pictures soon. It is Lori’s paradise. She can spend the whole day in there, sleeping, playing, listening to music, reading, and now, with her new tea set, she can enjoy her afternoon tea in there as well. We also set up a sewing area as well as a crafting area. The idea was to spend some time making outfits for her girls, unfortunately the energy required is usually too much. The couple outfits she has made are very cute. The girls love them.
Of course there are the Boys. We couldn’t be prouder of all three. Jason and Ricky are both doing great in their 2nd year of college. Mike graduated, was voted most valuable senior in the band, and, after taking a semester off and putting some money in the bank, he is now in school working on his Teaching degree.
Lori treasures every moment she spends with all her boys. Nothing makes her happier. Being home all the time does allow her to be here whenever the guys are here. They are all real good about taking time and watching movies or playing games with Lori. I couldn’t be prouder.
Perhaps a year from now, when I recap the 2006 year, I can post some positive movement in Lori’s health. One can only hope. Until then, we continue to focus on what is truly the best part of life, Family and Friends.
From what I see the best thing that happen to Lori in the year 2005 was the re-establishing of relationships with some family and friends that she hasn’t talked to in years. It really brightens her days to talk to everyone and reminisce about the past while talking about the future. Thanks to all of you who have made the effort to contact Lori.
I also want to mention how Lori’s relationship with her Mother has become very close this year. They talk to each other almost every day. Lori wishes she could do more things with her Mom. Unfortunately, due to Lori’s health, they don’t do much, but the time they spend together is really precious to Lori.
In it’s own bizarre way the diagnosis of POTS was another positive event from last year. It allowed us to stop worrying about “what else is wrong” and gave us something to start treating. The disease is terrible, and the treatment is very contradictive to the treatment for the nephritis, but this is a good news post so we won’t get into that. Let’s just leave it as we now have something to treat, and that's a good thing.
Then there are the girls. Ah yes. Lori’s girls. Chatty, Hannah, Bug, Tiffany, Muffin, Jo, Holly, Emmy, Annie, and Haley. The girls give Lori so much joy. We started the year with one. The Chatty Cathy I gave Lori a few years ago as a Christmas Present (Chatty) was the only one we had 12 months ago. By the end of the year she was up to ten. Each has their own personality and enjoys doing different things with Lori (and me). Only two more to go and we can make our own calendar!
We moved some rooms around and turned my office into what we like to call “Lori’s Playroom”. Perhaps I’ll post some pictures soon. It is Lori’s paradise. She can spend the whole day in there, sleeping, playing, listening to music, reading, and now, with her new tea set, she can enjoy her afternoon tea in there as well. We also set up a sewing area as well as a crafting area. The idea was to spend some time making outfits for her girls, unfortunately the energy required is usually too much. The couple outfits she has made are very cute. The girls love them.
Of course there are the Boys. We couldn’t be prouder of all three. Jason and Ricky are both doing great in their 2nd year of college. Mike graduated, was voted most valuable senior in the band, and, after taking a semester off and putting some money in the bank, he is now in school working on his Teaching degree.
Lori treasures every moment she spends with all her boys. Nothing makes her happier. Being home all the time does allow her to be here whenever the guys are here. They are all real good about taking time and watching movies or playing games with Lori. I couldn’t be prouder.
Perhaps a year from now, when I recap the 2006 year, I can post some positive movement in Lori’s health. One can only hope. Until then, we continue to focus on what is truly the best part of life, Family and Friends.
Saturday, January 14, 2006
2005 A Year Of Adjustments
The year started out with the realization that Lori was no longer able to do her job, and it was not a temporary situation. It was shortly after the year started we went to the Spa to gather what was left of Lori’s personal belongings. It was a very difficult thing to face for all of us, but hardest on Lori.
We started what was supposed to be 6 rounds of chemotherapy in January. Due to a low white blood cell count we had to stop after only 5. The treatments were very troublesome for Lori. After the first two they did get a bit better (as did our planning for what was to come).
Lori’s blood problems forced us to stop the Chemo treatments. It was a bit scary as her White Blood Cell count was in the critical range for about a week. It got better but stayed in the serious range for about a month. Even today her WBC count is still low.
Another issue we had to deal with at the same time was losing Dr. Tumlin as our nephrologist. His leaving to go to a new Hospital forced us to make a tough decision to find a new nephrologist. It was a rough decision to make. We really respected and valued Dr Tumlin.
Throughout the year Lori’s fatigue never let up. As the year went on her symptoms actually worsened. During a trip to the Emergency room in August we discovered a possible cause for some of Lori’s problems. A few tests and a couple of Dr visits later Lori was diagnosed with POTS. It helps know what is causing some of the problems so we can treat the symptoms properly
From my point of view the diagnosis of POTS has given us some relief. What I mean is we now know what is causing most of the problems. It is no longer a guessing game. We no longer are hearing the Doctors saying “[insert disease name here] should not be causing you the fatigue you are experiencing”
Since the diagnosis we have been living one day at a time. Nothing new, which is a blessing I suppose. Some days are good. Most are not. The aches and pains are a daily occurrence. Most nights we sleep in separate beds with Lori sleeping on the air mattress. (Maybe this year we can get a real airbed).
Shopping, cooking, cleaning, working. All of these are no longer a part of Lori’s daily life. She now showers while sitting in a chair and cooks once or twice a week. She has gotten used to parking in handicap parking, using the electric chairs at the stores, and me pushing her around in her transport chair. It has definitely been a year of adjustments.
I should mention Social Security has denied Lori’s claim for disability. Her disability insurance company has provided a law firm who is handling the appeal. No word as of this writing.
Two years have passed since Lori was diagnosed with her Kidney disease. The treatment still continues. 2004 was a very difficult year with Lori fighting to keep her way of life in tact. 2005 was an emotional year with Lori dealing with the fact that her life has changed, and, at least for the near future, will not be the same. 2006 is a year still in it’s infancy. All we can do is hope it turns out to be a good year.
We started what was supposed to be 6 rounds of chemotherapy in January. Due to a low white blood cell count we had to stop after only 5. The treatments were very troublesome for Lori. After the first two they did get a bit better (as did our planning for what was to come).
Lori’s blood problems forced us to stop the Chemo treatments. It was a bit scary as her White Blood Cell count was in the critical range for about a week. It got better but stayed in the serious range for about a month. Even today her WBC count is still low.
Another issue we had to deal with at the same time was losing Dr. Tumlin as our nephrologist. His leaving to go to a new Hospital forced us to make a tough decision to find a new nephrologist. It was a rough decision to make. We really respected and valued Dr Tumlin.
Throughout the year Lori’s fatigue never let up. As the year went on her symptoms actually worsened. During a trip to the Emergency room in August we discovered a possible cause for some of Lori’s problems. A few tests and a couple of Dr visits later Lori was diagnosed with POTS. It helps know what is causing some of the problems so we can treat the symptoms properly
From my point of view the diagnosis of POTS has given us some relief. What I mean is we now know what is causing most of the problems. It is no longer a guessing game. We no longer are hearing the Doctors saying “[insert disease name here] should not be causing you the fatigue you are experiencing”
Since the diagnosis we have been living one day at a time. Nothing new, which is a blessing I suppose. Some days are good. Most are not. The aches and pains are a daily occurrence. Most nights we sleep in separate beds with Lori sleeping on the air mattress. (Maybe this year we can get a real airbed).
Shopping, cooking, cleaning, working. All of these are no longer a part of Lori’s daily life. She now showers while sitting in a chair and cooks once or twice a week. She has gotten used to parking in handicap parking, using the electric chairs at the stores, and me pushing her around in her transport chair. It has definitely been a year of adjustments.
I should mention Social Security has denied Lori’s claim for disability. Her disability insurance company has provided a law firm who is handling the appeal. No word as of this writing.
Two years have passed since Lori was diagnosed with her Kidney disease. The treatment still continues. 2004 was a very difficult year with Lori fighting to keep her way of life in tact. 2005 was an emotional year with Lori dealing with the fact that her life has changed, and, at least for the near future, will not be the same. 2006 is a year still in it’s infancy. All we can do is hope it turns out to be a good year.
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